Two Arms and a Head
The Death of a Newly Paraplegic Philosopher
by Clayton Atreus
Forthwith this frame of mine was wrench’d
With a woful agony
Which forced me to begin my tale
And then it left me free
Even the bravest rarely have the courage for what they really know.
“I try to lead as normal a life as possible, and not think about my condition,
or regret the things it prevents me from doing, which are not that many.”
Is anything in man so deep-rooted and prevalent as the drive to see things as they are not? What Professor Hawking says here is reasonable, up until the last five words. That’s where the sky cracks and falls. Relativity and quantum mechanics may both be mind-bending and baffle the understanding, but no less than when a world-famous mathematical and scientific genius who can do little more than twitch his cheek and move his eyes; who cannot feed, dress, wash, or care for himself in the most rudimentary way; who would, if abandoned next to a stockpile of food and water, starve and eventually die of dehydration where he was left, positioned as he was left, tells us that there are “not that many” things he cannot do.
This book is very unusual, partly because I am not even sure what to make of it. Nietzsche said “Of all that is written I love only what man has written with his blood.” This book is born of pain. I wrote it out of compulsion during the most hellish time of my life. Writing it hurt me and was at times extremely unpleasant. Is the book my death-rattle or the sound of me screaming inside of my cage? Does its tone tell you I am angry or merely seeking a psychological expedient against the madness I see around me? The book is my creation but is also in many ways foreign to me for I am living in a foreign land. Most generally perhaps it is just the thoughts that passed through my head over the twenty months I spent moving toward death. I am certainly not a man who is at peace with his life, but on the contrary I despise it as I have never before despised anything. Who can sort it all out? Being imprisoned in the nightmarish cage of paraplegia has done all manner of violence to the deepest parts of me. Still, I have not gone mad.
I lived with the feeling that I was a very rare person. Why? There are many people who have a lot of the same capacities and virtues that I did. What was so special? It’s simple, I am a truth-teller. That is the virtue that is developed to an extraordinarily high degree in me. Shakespeare said, “honesty’s a fool and loses what it works for”. This is often true in dealing with others but my truthfulness has a great deal to do with how I relate to myself. Often there is nothing more unpopular than the truth. I will not make many friends with this book, but that is my lot in exposing many things people would prefer not to see or know about. Nietzsche was a truth-teller, as were Dostoevksy and La Rochefoucauld. Most think that telling the truth is a simple matter- one just tells it. But that is not the way it works. One must pay close attention for a very long time and a great many conditions in one’s life must have been right. Above all perhaps, one must stay out of one’s own way. Being a truth-teller is generally not altogether chosen- it is thrust upon a person. Passion for the truth is a thing highly questionable in its very self. It can make one ill. It must be kept within bounds so it does not become masochistic or self-destructive. It is an uncanny, perilous condition to live with.
The thing you might need above all else in reading this book is an imagination. I will be showing you the Grand Canyon through a drinking straw at times. I will paint some broad strokes but at other times will try to describe very poignant and unusual experiences and if you do not stop and follow me with your imagination, the words are liable to skip across your consciousness like a rock across a pond. I am no literary genius and don’t expect everything I say to be understood, but if you would like to know what my experiences have been like, and what I am like, I will try my best to show you
What do I think of this book? I have no affection for it. I find it odious and unattractive and am very saddened that I wrote it. But it is what I had to say. It took on a life of its own and when I now step back and look at what I created I regard it with distaste. If I could, I would put all of these horrible thoughts in a box, seal it forever, then go out and live life. I would run in the sun, enjoy my freedom, and revel in myself. But that’s the point. I cannot go out and live life because this is not life. So instead I speak to you from the place I now occupy, between life and death.
Preamble: About Me
My original thought in writing this book was that my personality, character, and general world view would become apparent on their own but I’ve realized that making a few things clear at the outset will be better. So I will paint a few broad strokes to tell you who I am.
While I view ethics as among my primary concerns in life, my view on the nature of morality is that it is purely subjective. That is, though facts are relevant to moral questions, moral principles themselves have no factual basis. Put another way, any pronouncement that something is either “right” or “wrong” in a moral sense can have no truth value and ultimately no objective meaning. Einstein said:
“I do not believe in the immortality of the individual and I consider ethics
to be an exclusively human concern with no supernatural authority behind it.”
I agree. Some, like Bertrand Russell, think this statement remains consistent with the idea that morals are factual. Perhaps, but I have yet to be shown the foundation stone upon which they could possibly rest. So when I use the word “morals” I am always talking about my morals, or his morals, or their morals. Never morality “in itself” because there is no such thing. Here is a fact: there are no moral facts. Many people, often religious, take this kind of view to imply directly that people like myself are unprincipled, profligate, and completely unconstrained by any moral considerations. In fact, these are probably some of the more flattering things they think about us. But these ideas are ridiculous. Just because someone does not believe in absolute morality does not mean he cannot be passionately and powerfully devoted to a set of moral principles. And a person thinking the word “wrong” has no factual meaning does not imply that she would have no objection, for instance, to priests putting their penises in seven-year-old boys’ mouths, no matter how much so many pious, holy, and venerated fathers of the church like doing such things.
You may wonder then what basis I could possibly have for differentiating between all the ideas of morality that might present themselves to me, and why I would even bother trying to be moral at all. Kierkegaard distinguished between the moral and aesthetic modes of life, devaluing the aesthetic as inferior. I disagree and think them one and the same. I live my life in such a way that my character and person have the quality of beauty. That is the basis for my morality and if you then ask what beauty is I will respond that it’s simply what I feel it to be, no more and no less. As you go on reading you may find that my ideas of beauty are markedly different than yours. Or they might be the same. I don’t know. I am capable of being quite loving, patient, devoted, gentle, and generous, but at the same time I can be aggressive, volatile, intimidating, and even violent. None of these things are at odds with my conception of being a beautiful person. In fact I find a man’s incapacity for violence, as an example, quite disappointing and contrary to my taste. Whatever you think about my morals I assure you that they are more internally consistent than those of about anyone you know and that I apply them with a great deal of care and thought, which is far more than I can say for most human beings I have met.
With this in mind let me talk about a being who, unlike myself and thankfully many other humans, is evidently completely unwilling to intercede in such circumstances, though putatively possessing unlimited power to do so: God. The omniscient, omnipotent, and most perplexingly, omnibenevolent thing in the sky that somehow lets all sorts of gut-wrenching, unspeakable atrocities drag on to the most agonizing lengths here on the planet inhabited by his creations who he loves to an infinite extent with all his infinitude. I am an atheist, but not merely an atheist. People sometimes distinguish between two types of atheists- strong and weak. Strong atheists think it can be positively proven that God does not exist and weak atheists, while they do not believe in God, believe at the same time that God’s existence cannot be disproved, something like one would have a hard time disproving the existence of a 5000 pound gold nugget somewhere in the universe. I am a strong atheist, but not merely a strong atheist. Now and then I read something that expresses my feelings so perfectly that I come to understand myself better. The Marquis de Sade was not to my taste in many ways but something he said captured my feelings about God so profoundly and succinctly that I could never put it better:
“The idea of God is the sole wrong for which I cannot forgive mankind.”
The way this idea plays itself out in the beliefs, attitudes, and actions of so many who embrace it is nothing less than terrifying. For example, 25,000 children die each day from starvation yet the Catholic church still actively opposes the use of birth control. Words cannot describe a thing more inhuman. And the fawning, sycophantic, unquestioning, swooning, pitiable way so many worship God is enough to make me puke. They have no problem kissing God’s feet while he stands by letting toddlers be suffocated in plastic bags. How could they believe in a God that wanted to be worshipped like that? Some creation myths are relatively innocuous but that people can actually believe in a religion like Christianity is something that drives me to the edge of despair. The practical consequence of this is that my life aims at no transcendent world, or “beyond” or anything like that. Any value to be found in my existence must be found here in this life. There is nothing else.
Am I a nihilist? I call my friend Abel “Honest Abe” because he always tells me the truth. A couple of times I have even suspected he might have outdone me in honesty. Once was when he said he was a nihilist. He and I are both atheists and I’ve wondered if nihilism is necessarily implied by atheism. I don’t mean to waffle, but I’d say it is and it isn’t. It is in the sense that yes, all of the “meaning” mankind gets so worked up about will eventually come to nothing when the sun burns our planet to a crisp. It isn’t in the sense that there are all sorts of things we can do and enjoy and feel fulfilled by while we are here on Earth. I am not a nihilist. It in fact seems ironic to me that so many religious and “spiritual” types think atheism implies nihilism when the truth is that many of their beliefs and pronouncements imply nihilism when scrutinized. “Every human life is equally valuable.” That sort of thing.
Am I a misanthrope? I think the idea of hating mankind as a whole is just as senseless as that of loving it as a whole. It seems to me that many philosophers who have been derided as misanthropes were just those who had the highest dreams, hopes, and aspirations for mankind. I believe there are many, many fine people in the world. There is nothing I love more than a human being who has turned out well. Such a person pleases me tremendously. All of that said, on anything more than a superficial level, I tend not to derive much deep satisfaction from others. As Hamlet said, most people simply “delight not me”. The fact is that we are in many ways not much different than animals and it takes a great deal of work and time to become a human being. I do not believe most put in that work. I try not to despise people in part because it is not good for my purity of heart and in part because it is not bound to be very productive. In short, a great human being is the greatest being in the known universe, and a mediocre one is just . . . a mediocre animal.
A question central to how I feel about people is that of personal responsibility. Part of the reason my feelings about others are in constant flux is that I think personal responsibility is an insoluble philosophical problem. That is, it seems to me that responsibility in a moral sense, not in a causal sense, is simply impossible to pin down. It is a word we use that can be as meaningful as many others but in my mind the criteria upon which to base a final and absolute verdict on it are never present. Or put another way, there seem to be two irreconcilable forces at work which each shape our ideas of personal responsibility with equal power. The first is just that we cannot do without the idea. It is indispensible to the very notion of action and so fundamental that without it everything falls apart. The other is the irresistible force of deterministic science and the fact that we are biological organisms as fully subject to the laws of nature as rocks rolling down hills. So is it the obese person’s fault that he is obese? Or the drug addict’s fault that he is a drug addict? I believe there can be no final answer to these questions but the stance that is most beneficial to humanity is going to be the one that errs on the side of holding people responsible. In short, that we are responsible for nothing about ourselves is an untenable view and that we are responsible for everything about ourselves is equally untenable, and where one is to draw the line, the real line, nobody can say, for there is no fact of the matter. What I end up having to do is feign conviction when I hold people responsible for things. That is, I try to do it for their own good or for some higher good, but not because I really believe very strongly that the responsibility for their actions rests squarely on their shoulders. In my own case, however, I have a tendency to push my responsibility as far as I think it can reasonably go. In the end though, I think responsibility hangs in the air, holding itself up by its own bootstraps.
Since I don’t believe in morals I am free to do whatever I feel as long as I have the power and it accords with my conscience. Regrets are generally foreign to me, as is guilt. The only time I really feel guilt is when my conduct does not accord with my ideals, so others have no power to make me feel guilty. I am concerned with the condemnation of others only insofar as it can have some negative effect on my life. Their opinions with respect to my conduct are of interest to me only for that reason or if they can win me over to the principles underlying them.
I am an extremely passionate person and have a very intense and profound experience of life. I was quite physically strong and capable. I do not think the life of the mind is complete- adventure was essential to my happiness. Nutrition and physical activity seem to me necessary underpinnings of full life. Efficiency is extremely important to me and I took a great deal of pride in the facility with which I was able to manage my life on an everyday basis. My goal was to make myself the most complete, beautiful, inspiring, wonderful human being possible. I paid constant attention to the task and it often felt like a very solitary one. I wanted my experience of life to be broad, expansive, profound, and full of triumph. I notice I am speaking in the past tense but I won’t go back and correct it. I’ve had that tendency for some time now, and it is because for me, paraplegia and life itself are not compatible. This is not life, it is something else. Lofty words and tales of great deeds fire my spirit. I fantasize about great power and influence. I want to be splendid and magnificent. I want to run and jump and fight and laugh and live the most free-spirited, joyous life imaginable. To go all over the world, to the most obscure jungles and landscapes, to work in great cities, to go this way and that. I want to make my person and my life into absolute wonders, spectacular and breathtaking works of art. It was my time to shine.
“Now the truth of the matter is that there are a lot of things people don't understand. Take the Einstein theory. Take taxes. Take love. Do you
understand them? Neither do I. But they exist. They happen.”
In May of 2006 I began an attempt to make a solo motorcycle trip from Seattle to Argentina, a distance of about 14,000 miles. The plan was to spend three months making the trip and then start law school in the fall. It was spring and I was thirty years old. Salvador Dali said, “Each morning when I awake, I experience again a supreme pleasure.
That of being Salvador Dali.” That was how I felt about my life. It had taken a long time and a lot of work to earn that feeling. Everything I had wanted for years was right in front of me. I was going to get my J.D. and a Ph.D. in philosophy. My plan was, among other things, to be a philosophy professor for at least a while. I believed I had a special gift and could be not only a good professor, but an absolutely wonderful one. But I also needed adventure and the law degree would give me the ability to easily get fun and exciting jobs all over the world. On the weekends I would climb mountains and jump and play in the ocean. I would take months off at a time- travel, adventure, girls, fun, rowdiness, freedom! Sounding my barbaric YAWP across the rooftops of the world! Three weeks into my trip, a few hours south of Acapulco, a donkey ran in front of me and I hit it going around sixty miles per hour. I remember every detail perfectly.
Two donkeys were on the left side of the road. One looked kind of skittish as I approached. I immediately remembered something from my motorcycle safety course about evading pursuing dogs by speeding up at just the right moment. I also simultaneously realized that this didn’t apply but was feeling a bit aggressive and impatient just then. I found much of Mexico disgustingly filthy beyond any conceivable reason apart from pure slovenliness, was approached and had my pocket picked on the street two nights earlier by a transvestite hooker, and had to go through some bullshit with another guy who had ripped me off the night before. I of course expected those sorts of things on the trip but was just a little impatient to reach Guatemala. So as soon as the idea of accelerating occurred to me, I did it. The donkey, probably alarmed by the sound of the engine, started suddenly into the road, jumping like someone had whipped it. Then just as suddenly it relaxed, casually trotted along, and stopped directly in front of me. A message should have gone from my brain to my right hand and foot, telling them to operate the brakes, but the situation somewhat perplexed me so I didn’t react properly. I have zero experience with donkeys so to me this was almost as bizarre as if it had been a hippopotamus. “A donkey?” That is what my brain said. “Donkey?!”
So instead of braking I tried to go around him to the right but his head was just about to the edge of the road and there was a ditch for a shoulder. This all happened in a matter of seconds. The vivid detail with which I remember these last moments is quite pronounced in my mind. Up to the very point of impact, my visual image of the donkey’s face was perfectly sharp. I saw the texture of his furry head in increasingly close-up detail as my eyes came within about three feet of him. The next thing may sound odd or it may not, but just before the left end of my handlebar smashed into his face and killed him I perceived him to be expressing some kind of emotion. He looked a bit crestfallen, or penitent. Maybe it was just the normal downward position of his head that gave me this impression, but he seemed to lower it perhaps slightly more than usual and to cast his eyes down like an abused dog, submissively resigned to a beating it sees coming. Or maybe my imagination is running away with me. Anyhow, I’ve since said to myself many times “Fucking donkey!” but the truth is that I have no resentment toward him. I hope he had a good donkey life.
To digress for a moment, here’s my advice for those who conduct motorcycle safety courses and write the books that go along with them. Include somewhere the following sentence. “If you see an animal on the side of the road ahead of you, slow down immediately.” Maybe include some pictures of animals so the brain can associate the idea more readily to the visual stimulus. Most people who read this might think I’m a complete fool for not knowing this without being told. As Gracian said: “The world is full of fools; and he who would not wish to see one, must not only shut himself up alone, but must also break his looking-glass.” So I won’t argue. There is no question that I was an inexperienced, aggressive, cocky motorcycle rider. Whatever the case may be I can say with some confidence that if I had read that precise sentence in my safety manual my brain, instead of going to the file about evading menacing dogs, would have pulled the file concerning animals on the side of the road. The idea “brake” would then have suggested itself instead “accelerate”, and I might just be happy and having the time of my life studying law in Venice right now, with wine and gondolas and pretty girls.
The moment after I hit the donkey I experienced absolutely nothing and while my consciousness was busy not existing my torso folded forward at mid-chest level and my T5 vertebra experienced a tremendous compressive force which caused it to burst- which is why it’s called a “burst fracture”. When it did this my spinal cord got crushed. If I had not turned from nothing back into something in that ditch on the side of the road I would not have known the difference. When I woke up the first thing I saw were my legs and they were no longer mine. They were there, but they weren’t there. How can one describe such a thing? I was looking at a still-life painting and my legs were part of it. It wasn’t real. Who or what was I? There was an experience, but who was having it? Some Mexican guys were there. They were trying to pick me up but I told them to stop because they were grinding the broken ends of my spine together and it hurt. One showed me my heavily abraded helmet. All of the meat was ground off of the top of my right foot. The bones and dangling ends of tendons were clearly visible though my sneaker was still on. This did not alarm me though, probably because the surreal experience of having zero sensation from my chest down had me in a state of suspended reality and I didn’t feel it anyway. How I got from there to here is an interesting story, but I will skip it. In short, I went to the hospital for two weeks, rehab for four, and started classes three weeks later. Now more than a year has passed and I’m sitting here in Nashville, Tennessee, having recently completed, to speak loosely, my first year of law school.
My T5 vertebra broke, but my “level” as a paraplegic is T4. The “T” stands for “thoracic” as in I am paralyzed below the level of my fourth thoracic vertebra. This means that I can neither feel, move, nor control anything below my nipples. We need to get very clear on something right at the outset. It is just axiomatic and indisputable that everything below my nipples is no longer me. Hence the title of this work, “Two Arms and a Head”. Einstein said:
“The distinction between past, present, and future is only a stubbornly
Another stubbornly persistent illusion is that when you look at me, you think you are seeing a whole person. First things first. Right now, once and for all and forever, shatter that illusion. I am two arms and a head, attached to two-thirds of a corpse. The only difference is that it’s a living, shitting, pissing, jerking, twitching corpse. To visualize this, wrap a towel around yourself the height of your nipples and look in a mirror. What is above the towel is what I am. What is below the line is the inert, onerously heavy, dead slab of waste-excreting meat I am fated to lug around forever. I sometimes look at people and draw that imaginary line in my mind. Do it yourself and look at how much is below it. What was once my beloved body is now a thing. I am a brutally, unthinkably mutilated human being. If you think people’s legs and genitals being ground off or smashed into paste approach the outer limits of what is gruesome, you have not pushed your imagination far enough to comprehend something far more horrific. If you think those types of things are worse than paraplegia, you are being fooled by the illusion.
This is among the most basic, absolute truths about my injury. There can be no argument or controversy about it. If you have some quarrel here we’re off to a very bad start and there is a good chance that you are a disabled person with an irretrievably distorted perception of reality. Two arms and a head. Period. Additionally, I will be using a sort of shorthand in this book when I refer to parts of “my” body. So when I say “my penis”, for instance, what I really mean is “the unfeeling, alien piece of flesh that used to be my penis, but is now just part of the living corpse I will push or drag around forever until I am dead.”
Imagine a man cut off a few inches below the armpits. Neglect for a moment questions concerning how he eliminates waste and so forth, and just assume that the site of the “amputation” is, to borrow from Gogol, “as uniform as a newly fried pancake”. This man would be vastly, immensely better off than me. If you don’t know who Johnny Eck is, he had a role in the 1932 movie “Freaks”. He was the guy who was essentially a torso with arms. He walked on his hands. How fortunate he was compared to me may not register right away, because the illusion I mentioned above would probably make you find Johnny Eck’s condition far more shocking than mine. But the truth is that mine is much more horrible than his, barring whatever social “advantages” the illusion of being whole might confer on me. The other day I saw a picture of a woman missing both legs. They were cut off mid-thigh. I thought that if only I was like her perhaps my life would be bearable. She was, in my opinion, better off than the pancake man, who is beyond any doubt far better off than me. One man said to me, “At least you didn’t lose your legs.” No, I did lose my legs, and my penis, and my pelvis. Let’s get something very clear about the difference between paraplegics and double-leg amputees. If tomorrow every paraplegic woke up as a double-leg amputee, the Earth itself would quiver with ecstasy from the collective bursting forth of joyous emotion. Tears of the most exquisitely overwhelming relief and happiness would stream down the cheeks of former paraplegics the world over. My wording here is deliberate. It’s no exaggeration. Losing both legs is bad, but paraplegia is ghoulishly, nightmarishly worse.
Consider that as two-arms-and-a-head I now weigh about 50 pounds. The living-corpse part of my body weighs about 130 pounds. My wheelchair weighs about 40 pounds. This means that I am a 50-pound being that is fated forever to move an extra 170 pounds around with me more or less everywhere I want to go under my own power. The numbers are guesses but close enough. I believe that unflinching honesty will see this as one of the most straightforwardly stunning and glaringly monstrous facts about my condition. Think about it and let it sink in. Suppose you are a 160 pound person. To get a rough idea of what this might be like, proportionally, go to the hardware store and buy a length of heavy chain and a padlock. Then go to the gym and chain 540 pounds of weights around your waist. That’s 12 of those big 45-pound plates. Once you have done that, and have them locked on nice and tightly, set them on a rolling cart and go have some fun. But first consider another thing.
I just measured the width and depth of my full-sized clothes dryer. It is 29” wide and 25.5” deep, which means it covers 5.14 square feet. My wheelchair is 25.5” wide and 36.5” from the back of the wheels to the front of the footrest. Noting that it is quite nearly rectangular, and neglecting that my feet stick out about four inches past the footrest, that makes me take up right around 6.46 square feet of floor space. So area-wise, I’m about 125% the size of a standard dryer. People tell me I can still go out and socialize. This is true in a sense, but it’s a little different. To get an idea of the difference, go get one of the cardboard boxes dryers come in, cut holes in it for your head and arms, put it on, get down so you can walk around on your knees (I’m 4’5” now), and go to a crowded bar or party. Then socialize. I feel that the nearly impossible awkwardness of my new physical form is very hard to get across. It might not strike you as quickly or forcefully as the weight thing in the paragraph above, but it’s just as salient a reality in my life now. So to give a more complete picture, instead of chaining the weights around your waist like I said above, you could just have a dryer on a two-wheeled dolly and have to take it with you everywhere you went for the rest of your life. But also, the dryer weighs 540 pounds.
This example is good too because while you are moving the dryer around you will not be doing anything else with your hands. It may seem a small point but it’s not. Have you ever strained your neck such that it hurts every time you move it and all of a sudden you realize that you move your neck about one-million times per day? It’s similar with carrying things and doing things with your hands while you are walking. In fact I need to say something here and make it very clear. It is going to be a point of enormous contention with the disabled community but no matter. Here it is:
I am devastatingly, cataclysmically physically disabled. I am so extraordinarily, staggeringly, ubiquitously incapacitated that it defies description. Think of a race between an Olympic sprinter and your 93-year-old, arthritic, osteoporotic great-grandmother who is using a walker with a 50-pound stone chained to one of the legs. When the gun goes off, the sprinter is just . . . gone. That is analogous to the difference between my physical abilities before and after my accident. And I’m not talking about playing flag football and doing gymnastics. I’m talking about the little, everyday things that people do all day, every day, in a normal life. Nothing, ever, no way, under any circumstances, can ever make this untrue. Disabled people will argue until they are blue in the face over it, but it’s all just noise. The facts of the matter loom and cast their shadow like a 3,000-foot granite cliff. The place for me to engage the crazies on these sorts of issues comes later. Superman is to my former self as my former self is to a paraplegic. Carrying locomotives, leaping over tall building, flying at supersonic speeds, doing things so quickly that he is just a blur. For now, believe it or don’t. In the former case you will be right, in the latter you will be out of your fucking mind.
To keep the party rolling I will tell you about piss and shit. Some things I will say in the course of writing this book will be redundant. This is intended because I notice that much of what follows from “cannot feel or control anything below my nipples” often escapes people. They frequently ask questions that show me this. So no, I cannot control the muscles that regulate defecation and urination, nor can I feel urges to go. By the way I hate writing about the stuff that follows. It’s unpleasant and ugly. This chapter was longer. I cut it down quite a bit but there are still plenty of disgusting details left. I invite you not to read it or to go ahead and read some other part of this book first. But it’s already written and I’m not deleting it.
To urinate I have to slide a catheter down my urethra. When I was in rehab at TIRR in Houston, a place I despised for all sorts of very good reasons, I once got 1650mL of urine out of my bladder in one shot. The nurse said it was the most she had ever seen. Always impressing the ladies. Currently the most my bladder can hold before I pee my pants is about 400mL but it varies from day to day. I was taught that my kidneys were capable of producing approximately 1mL of urine per minute but in my case it’s about 4mL. What follows is that I have to be really careful about how much I drink if I don’t want to wet myself. Furthermore though I try to be careful and cath properly I am very prone to bladder infections. Sticking a foreign object twelve inches up inside your body six times per day is tricky to do without ever getting any germs in there. When I have infections I wet myself every thirty minutes or so.
My bladder is unpredictable. I think certain foods do something odd to my system but I haven’t been able to isolate them. Sometimes when I start to pee myself I will cath and find that my bladder was overfull with close to 500mL, other times I get only about 25mL which for reference is at most one-half what you can fit in your mouth. One can get a “pee bag” to strap on when things get like that. I haven’t tried it yet but it sounds pretty good. I’ve heard girls go crazy for guys with pee bags. I try to do things right but they keep going wrong. I get control of my bladder issues, then I lose control of them. Having had to sit and lie in urine so many, many times over the past year is a small price to pay for the opportunity to contemplate the arcane mystery of a paraplegic’s recalcitrant bladder though. I have to constantly be mindful of my bladder. It fucking sucks and you will never be able to imagine how much, even with just that one little aspect of paraplegia. And the pee stories go on and on. In front of women. On a woman. Talking to one in particular as urine started running off the back of my chair and onto the floor. In a restaurant while in the company of a beautiful girl. In class many times. Once right before I had to go up and speak in front of one-hundred of my classmates. I have plenty more. I wrote a haiku:
Shower-fresh and clean,
drag carcass on bed to dress:
hello pee fountain
If you think peeing on myself and sticking catheters up my dick is bad, dealing with my own feces is worse. In essence I am a shit midwife. To defecate I finger myself up the ass and root around and around until the shit comes out. Nuggets, smooshy, whatever it is I’m digging in it. I usually go four or five digs with five minutes or more between each so it can take a good amount of time. It can be very messy and often nauseates me. Just the other day I looked at my glove, smeared all over with loose, disgusting shit, and there was blood too, dark red, mingling with the shit to make blood-shit liquid which was running down from my fingers. But there was still more work to do fingering the unfeeling, shit-excreting hole in my living corpse. With piss-dowsing and shit-digging I practically keep the rubber-glove industry in business. Let me tell you what it’s like to shit yourself when you’re a paraplegic.
I don’t know the statistics on normal people shitting themselves. Before my injury, I never did it. In fact, I only learned the word “shart” while I was on my motorcycle trip, from two friends in Las Vegas. They were surprised to hear that I had never even sharted. But suppose as an able-bodied person you shit yourself. Aside from embarrassment in front of others and the possibility of being far from home or a shower it’s not that big of a deal I’d say. Just get up, cup your ass to keep the shit from going down your legs, and go stand in the tub to deal with it. So it shouldn’t be such a big deal for me either, right? Think again. I’ll tell you a story.
Recently I was out with a friend and ate two fast-food cheeseburgers. When you have a spinal cord injury and can’t control your bowels and bladder you are taking a risk every time you eat something you can’t predict the likely effects of. So since I am a relatively new paraplegic I get to have lots of learning experiences like the one I’m about to describe. The day after I ate the cheeseburgers I was sitting naked on my couch, on top of a folded-up towel in case I peed. Then I shat myself. Here’s the play-by-play. I scooted up to the edge of the couch to get in position to transfer onto my wheelchair. I tried to keep the now-shitty towel under my ass but couldn’t so I smeared shit on the couch. Then I got on my wheelchair and smeared shit all over the seat. It was loose, smelly, disgusting shit- the fast-food cheeseburger kind. Some fell on my carpet. I went in the bathroom and of course had to get the rest out so I got on my special raised toilet seat, smeared shit all over it in the process, and got shit all over my arm as I dug up my asshole to get the rest of the shit out. More shit fell on the floor. And when I say I smeared it on the wheelchair and toilet seat I’m not talking about a little. I’m talking about go buy a container of icing, put the whole thing on your bed in one glob, sit on it, and then drag your ass across the bed. So after the shit-digging, it was back on the chair and into the shower which of course involved smearing shit all across my shower bench. I washed the towel I had been sitting on and my wheelchair seat-cover in the shower because I didn’t want to make shit soup in my washing machine. There was a lot of shit on them so I had to smoosh it through the holes in the shower drain with my fingers. Then I got out, nice and clean, did laundry, wiped the shit off of my couch, cleaned a great deal of shit off of my toilet seat, and cleaned more shit off of the floor and carpet. All in all, it took about an hour and a half to deal with.
I read once that good grades correlate with class attendance. One can plausibly infer a causal relationship here as well. So my plan early on was to have as near-perfect attendance as possible in law school. Up, dowse piss, dig shit, shower, and just enough time to get dressed and off to class. One problem with shit-digging is you’re never really sure if everything is out because remember there is no sensation. So I was about to awkwardly get dressed when I heard a sound and looked down to see wet, nasty shit squishing out from under my balls. So much for my class-attendance goal. And there are other stories. Waking up in a pool of diarrhea on my bed, a day-long bout with diarrhea spent mostly on the toilet, etc. And remember that I can never just get up. Whenever there is shit under me, I’m not getting up and away from it. I’m smearing it all over the place.
How do you feel about reading all of this? Do you find me disgusting or tasteless for not simply leaving it out? Maybe I have a sick desire to degrade and humiliate myself by opening the curtain and exposing facts that are better untouched by daylight? Surely it does not indicate human greatness to go on at length about such things. Sorry but you’ve got me wrong. I’m just telling you how it is. And unless I want to piss or shit myself, there can be no rest from this drudgery, ever, for the rest of my life. No relieving stretch of time without piss-dowsing and fingering myself up the asshole. Well I shouldn’t say that. I met a guy in rehab who stubbornly refused to dig shit out of his ass. I believe he thought himself far too heterosexual for that. He just wore a diaper and let the shit get all over his ass and balls whenever it chose to come out. So I have that choice, but I’ll pass.
Almost away from the topic of bowels and such but there’s one more thing. I cannot control my farts. This becomes more and more upsetting to me as time goes by. There is something tremendously humiliating about being with a young lady and subjecting her to the scent of my bowels. Girls are usually polite about it, which is kind. I can’t anticipate farts and can’t know if a second or third one will follow the first. So I just have to endure the fact that I fart indiscriminately, in class, at the dinner table, socializing, etc. Also I can’t cough (or yell) very well because I have no abdominal muscle control but if I really need to I can pull myself sharply forward and force air out of my lungs by quickly compressing my guts up under them. But often what I get for that is a fart. So sometimes I have to choose between an ineffectual coughing fit in a restaurant with company where I cough twenty feeble coughs to clear my throat and thereby get everyone concerned, or go for a big cough to end it quickly and risk a fart at the dinner table. And the same goes for pissing, because if it is near time for me to cath, leaning forward like that can put pressure on my bladder and make me pee myself. You must believe me that little considerations like this, with relation to my bowels and bladder, press at me constantly. Oh and as a corollary to the no-abs thing, if I lie on my back and try to sit up without using my arms to push myself up, all that moves is my head. It’s kind of funny. Lie on your back then say to yourself, “Time to get up!” Then just move your head.
The hygienic problems involved with my condition are a whole other, and related, ball of wax that you will just have to trust me on because they are a book in themselves. Do you think my balls and ass crack get much ventilation, for instance? I’ve got other topics to get to and this book is not intended to be a sustained treatment of the nauseous. I’ll just say that being as scrupulously clean and well-groomed as I once was is basically impossible unless I want to spend a third of my life at it.
To be redundant once more, I can’t feel my penis. For those of you who don’t make the connection instantly it might as well just be cut off. Having a lifeless, unfeeling penis makes it more convenient for me to cath than it is for women, but that’s about the end of its value to me. Men, think how losing your penis would make you feel. Ladies, think of having your clit amputated and never having sex again. There is a section on sexuality below so all I’ll say for now is this- Tantalus has nothing on me.
Contrary to seeming there is a tremendous difference between me and an able-bodied person sitting in a wheelchair. Tremendous. This also underlines an enormous error people make all the time and which needs to be corrected. The error is thinking that all people in wheelchairs are the same. They are absolutely not, and there is a huge range of disabilities and levels of function that exist in those who use wheelchairs. One reason many people in wheelchairs get frustrated is because they are often told things others in wheelchairs do but which are physically impossible for them. For example, I am two arms and a head but many people in wheelchairs are not even paralyzed but only impaired in their legs. That’s all the difference in the world. So back to the point, an able-bodied person in a wheelchair is a far, far more physically capable being than I am. Nothing keeps me sitting up- no hip flexors, erector spinae, hamstrings, or abdominal muscles. I am arms-and-a-head on a column of Jell-O. Or better, a giant Slinky. The implications of this for my physical capabilities are so profound that I cannot even come close to conveying them. It is one of the things that is truly beyond comprehension for anyone not in my situation. If I put one arm out to the side and don’t hold on to something with the other, I will fall to that side. If I put my arms out in front of me, to receive a dinner-plate, for instance, I will fall over. If I were to reach for a tissue with my right arm just now, and not hold myself up with my left, I would fall forcefully, face-first, directly onto my desk. The list is endless.
What this means is that more or less any time I am not reclining or in bed, and want to sit up straight, I have to hold myself up on my armrests, or by supporting myself with a hand on one of my knees, or something similar. Some people move their butts forward in their chairs and slouch to compensate for this, but there are problems with that too and it doesn’t help that much. No person with my injury can sit up perfectly straight, stretch their arms straight in front of them, and not fall forward. If you see someone with my injury doing it, they are not doing it. It’s impossible the same way it’s impossible for you to stand flat on your feet and bend your knees ninety degrees so your body is parallel to the floor. You can’t do it and neither can I put my arms out without falling over. Some paraplegics with lower injuries perhaps can, but not with my injury.
Imagine having a ten-pound barbell attached to one side of your head for about ninety percent of your waking life. Having to hold myself up constantly is something like that. It hurts my shoulders and elbows and is as unrelenting as gravity because that’s what it is. I sometimes have problems with my ulnar nerves that make my fingers go numb. They say using pads can help solve this but I’ve tried and it’s a persistent problem. Another thing some point out to me is how strong I will get from pushing the chair. First, that works only very specific and limited muscles, not that I have many left. Second, I’m definitely not going to get nearly the strength from pushing a chair as I would from lifting weights. I’ve gotten much weaker since I got hurt. Third, being a strong paraplegic is not particularly useful. Something like putting an average man and a bodybuilder in the deep end of a pool and telling them to push on the wall as hard as they can. There will probably not be that much of a difference. There is no foundation, no base to work from. Archimedes’ fixed point is missing. And so it is with being paraplegic. No matter how strong I get, my strength will never be especially functional. I’ll never be any good at throwing around bags of concrete.
“Without health life is not life; it is only a state of languor and suffering - an image of death.” -Buddha
What is left of me, what’s above my injury, sweats profusely at night. Profusely, like it runs off of me. It makes my pillows and bedding get wet and they smell gross within about two days of washing them. I wake up in the night and have to wipe myself dry. I recall once lying back down, unable to go back to sleep, and feeling the sweat run down my forehead drop by drop. I don’t quite understand the reason for this.
Neuropathic pain is pain that comes from a damaged nervous system. “Phantom limb” pain is probably the most well-known example. Of all the pain I’ve ever felt, it is most like the feeling of a jellyfish sting. When I fished for salmon, we would often get them on our faces. The pain is insistent, nagging, and so sharp it seems to crackle. It comes in peals. It makes you angry, like you want to strike out at it, because it never loses its freshness. Normally if you hit your head, for instance, you just absorb the initial pain and then it fades. But with neuropathic pain, it’s just as sharp and intense every time, over and over, like it’s mocking you. Sometimes it happens when I’m lying in bed and it’s like trying to fall asleep with someone sticking a needle between my ribs or the bones of my big toe. Some have it much worse than me, which must be horrible, but it is still pretty unpleasant. Time to get away from this odious chapter.
Hope in reality is the worst of all evils because it prolongs the torments of man.
Nietzsche is of course wrong in some cases but the question is whether he is right in mine. I judge that he is. “Dum spiro, spero.” While I breathe, I hope. For what though? There is currently no cure for spinal cord injury. If there were it would very quickly become common knowledge as it would be worth billions and billions of dollars. We hear all kinds of miracle stories but that does not necessarily mean anything. Of course there may be a cure in the future. Some people are hopeful that it will come very soon and others are skeptical as to whether it will at all. I believe there will be a cure, but not soon enough to benefit me. Someone has said that repairing the spinal cord is like reconstructing a crushed strawberry. I’ve read quite a bit on it. It’s complex and this is not the place for a scholarly article on spinal cord regeneration, in part because I could not write one if I wanted. The bottom line is that as long as I am a paraplegic life is not acceptable to me and I see almost zero chance of being healed. Whether I am right, only time will tell.
One man told me that hope is a “state of the heart” and not something based on evidence, or not entirely. My answer is that if it is, I simply don’t understand it. It’s hard to argue against such a position and it reminds me of when the religious talk about “faith” and how grand it is. Honestly I don’t see what they could possibly mean. Belief without reason? There’s supposed to be something challenging and admirable about being able to believe something in spite of all evidence that could be possibly adduced in any direction. I don’t see the challenge. It’s as if someone told me that they were imagining a square circle and that it was absolutely breathtaking. I would not strain to experience the same thing myself because it makes no sense. Like Vonnegut said, “Say what you will about the sweet miracle of unquestioning faith, I consider a capacity for it terrifying and absolutely vile.”
I’m aware enough of how important a person’s state of mind can be for healing. Those who believe they can heal probably heal better. Those that have hope hang in there longer are more likely to have things turn out well for them. It’s certainly remarkable and amazing how powerful positive thinking can be. That said, if one hopes with all one’s heart for an amputated limb to grow back, it won’t. As a paraplegic I can believe all day that if only I do this or that I will get better. Those beliefs and sixty cents would buy me a bag of chips. Is it better to have hope for something that is certain not to happen or to know the truth? It’s possible that something could happen that would fix me up as good as new in two years but I don’t think it will happen in two, five, or probably even twenty years. Then again it couldn’t happen in twenty years because by then I will have lost twenty of the best years of my life and nothing will bring them back.
Lost time is never found again.
Time is probably the factor most often overlooked when thinking about what is possible for a person like me. But it is such a tremendous factor that it deserves its own short chapter. It cannot be ignored. One thing the disabled love to say, and I’m sure I’ll mention it again, is that they can do everything the able-bodied can, but that they just do it “differently” or whatever. First, this is categorically false. Second, certain things they can “do” are rendered ridiculous by the single factor of how long it takes them. It may be that they can do this or that but neglecting to consider the time involved is often precisely what makes such comparisons absolutely absurd.
But how do we figure out what time is wasted? What do we compare to? People have told me since my injury that I can’t compare my life now to my life before. Another way to put that would be “Thinking about a normal life is only going to cause you pain.” No, of course I am going to compare. What other frame of reference can I be expected to have? Do I just forget everything? So my frame of reference is just me, as I was before I got hurt. When I write, I hear the voices of the crazies rise in protest at every other word. I anticipate them constantly. If you have a team of dump trucks and diesel excavators with five-yard buckets and I have a shovel and a wheelbarrow it might be true that we can both dig the foundation for a skyscraper but there is also an important difference.
Something I’m keenly aware of every day is how much of my time is wasted. There are any number of things that take me twice as long to do. This would be enough, but it’s not all. The truth is that many things take me ten, twenty, fifty times as long to do. Wasted time. Only one example- getting in and out of a car. How long does it take an able-bodied person to get into a car, close the door, get out again, and close the door? About three seconds. I’d say a very capable paraplegic without help will take about three minutes to do the same thing because they have to drag themselves into the car, lean over and take apart their chair piece by piece, put it in the car with them, and so on. It might not seem like much but on a busy day of errands I could easily get in and out of my car ten times. I am constantly aware of my time slipping away, being wasted in big blocks, but also in needles and pinpricks. Ten seconds here. A minute there. Go through a difficult door. Put on pants. Little nips of lost time. Over, over, and over. Day in and day out. For the rest of my life. Forever.
Many things don’t even make any sense to attempt, simply because of how long they would take. Some disabled people are in the habit of doing such things in order to prove that they are not impeded by their disability but in my mind they often just make a show of how incredibly disabled they are. No doubt some impressive things are accomplished in this way but it does not weaken the point in the slightest. There is a congressman named Langevin who likes to mention how it takes him three hours to get ready in the morning, with help. Three hours. Think about that as you read the next chapter.
Mathematics is the supreme judge; from its decisions there is no appeal.
Math does not lie. To start I’ll just note that physically my condition is all loss and no gain. Any added abilities I have are negligible: going under lower things without ducking, etc. With respect to my philosophical and personal edification there are certainly benefits. I have realized some things that I had tended to overlook before, and they are interesting things. Nonetheless, they are in part wasted because of my inability to incorporate them into a full life and their value cannot be compared to what I have lost. Would you extinguish the sun with a drop of water? Shoes last longer now. All loss, no gain.
Imagine one wanted to claim that my life could be just as good as it was before. My first thought is to say that this is preposterous and absolutely insane. Those who want to argue such things can always bring in the question of value, which makes matters difficult because they can make up whatever they want and object to anything they want on whatever basis they want. If someone tells you that, to them, having a candy bar at this exact moment would be better than having $1,000,000 in cash, how are you going to argue with that? My claim would generally be that if people were honest about what they valued certain conclusions about paraplegia would be inescapable. But let’s do some reckoning around the idea that my life could be just as good, using some simple values that we all almost universally recognize.
Before my life was a certain way. Not so informative- just a zero on a number line. Now we subtract everything I have lost. Next we subtract more for the burdens, impediments, etc., that have been heaped on. So, just at the outset, in order for my life to be as good as it was before, I would need at a minimum to effectively replace all of the goods I have lost, and compensate for the burdens and impediments with even more goods. So what goods could be conferred on two-arms-and-a-head to make up for all I have lost? Where’s our tally sheet? Okay, what do we put in place of giving children airplane rides? What replaces climbing trees? What replaces running? What replaces sex? This could go on for days. The point is that for everything one can come up with that I have lost or been burdened with, it will have to be replaced with or offset by something commensurate, or one must conclude that my life will simply be less desirable. Incidentally I mentioned this precise thing to a doctor and he said he didn’t think of life in that way. I told him he was flying off into the clouds.
But this isn’t all. Time again. Suppose I were to live exactly forty years from the time of my accident. You can’t, by the way, even imagine how monstrous such a possibility sounds to me. Suppose also that I sleep eight hours per day. How much of my time is wasted each day is impossible to say, partly because it involves a tremendously complex counterfactual and partly because I simply won’t do many of the things I would have before. I have no problem saying that given generally the kind of life I lived before and what I tended to accomplish in a day, more than half of my time is now wasted. Okay, before the shouts of objection, I’ll put it a better way. If you took the last two years of my life before my injury, totaled up everything I did in that time, and asked me to do all of it again, I can say with little doubt that it would take me more than four years to do all of that now. Much of it I couldn’t do at all. But no matter. This is not something I’m inclined to really elaborate on because it’s a mess. Let’s do some math.
I talked to a man with an injury similar to mine, but who was less capable than me, and he told me that his morning routine, after years of practice, took around an hour and a half. He said he couldn’t get it much under that. For me to get up, use the bathroom, shower, get dressed, eat, get my stuff together, and get out the door takes about the same amount of time, if I do one thing after another. Let’s not bicker about it. Able-bodied, I used to set my alarm clock thirty minutes before I had to leave the house for school or work. So that’s an hour of wasted time every day. Nothing too terrible, right? Don’t be so sure. 40 years, 365 days per year, one hour per day. That’s 14,600 hours. At 16 hours per waking day, that’s 912.5 days of my life.
912.5 days. Stand up. Touch your toes. Stand back up. Do this 912 times. Too much work- tap your finger on your desk as fast as you can. 912 times. No- then just do it until you get the point. Think how every, separate, little tap would represent an entire, sixteen-hour day of my life. Wasted. Gone. Taptaptaptaptap. How long would it take you to get to 912? Longer than you feel like tapping, I suspect.
From another perspective that’s 1825 uninterrupted eight-hour working days. No breaks by the water cooler. Given that in a normal work-year one works, 250 days, that’s 7.3 years at a full-time job. 7.3 years. It’s not a good job either. Think of it from an economic point of view- what’s the opportunity cost? What could I have done with that time? I’m in law school now, but suppose I had decided to go a different route. That time would be enough to attend all of the classes I’d need to get my Ph.D. in philosophy- twenty-eight times. I’d say that studying one hour per day for four years is enough to learn a new language, so I could use that time to learn ten new languages. Or how about five languages and five musical instruments? Instead of having carpal-tunnel and shoulder problems from constantly digging my finger up my ass and lugging around my ruined body, I could have Japanese, Italian, Russian, Latin, Ancient Greek, piano, sitar, banjo, vibraphone, and glass armonica. Or maybe I could write ten novels the length of “War and Peace”? An attainable goal at about one page per hour, don’t you agree? I’d get good at it and pick up speed.
This is part of what people have no idea about when they tell me I can “still do” things. Suppose I want to cook for myself and work out as effectively as I used to. People will say, “Why can’t you still do those things?” The answer is that I can on some conceivable account but it adds up. If I could formerly do it in one hour per day, it now takes two, that’s 7.3 years at a full-time job. “Just cath more often.” Every nine minutes I lose per day adds up to a year of full-time work. So really people don’t know what they are saying when they tell me things like that. They just get to feel like they have given some valuable advice and walk away feeling dandy while leaving me feeling more horrible and alienated than ever.
So maybe just working out, getting ready every day, cooking for myself, maintaining my living area, and cathing a few more times per day will add another 15 years of full-time-job work to my life. Just a guess. Add that to the 40 years I’ll have to spend just working anyway, and we’re looking at 55 years of work to pack into 40 years. And those are just bare essentials. Yes, I enjoyed working out and cooking for myself, but those were also the necessities of life. That’s not going out with friends, going on adventures, and so on.
But I can see your mind working already to find ways around this. Well you can do this, or this, or such-and-such. But I’m the one that’s supposed to be in denial, not you dear reader! So you will tell me that you know a guy who is like me and in a wheelchair, and somehow he manages to do all the things I used to do. How can I explain that? I simply contradict you and say you DO NOT know a guy in a wheelchair who does all I used to be able to do. Wake up! You are dreaming! No such person could ever possibly exist. This is a fact, not an opinion. It’s a fact just as surely as math doesn’t lie.
In Chinese, very subtle changes in pronunciation change the meanings of words. Experiments done on Chinese who were away from their native language for long periods showed something amazing. Over time, they lost the ability even to perceive the subtleties of their own languages. It was not necessarily that they forgot their languages, but rather that they could no longer even discriminate between the different sounds. They could not hear them. That sounds strange. One might tend to think that all humans more or less perceive the same sounds and sights, but just interpret them differently. One might tend to think many things. I’m no neuroscientist, but one thing I take to be true about functions in the brain and nervous system in general is: use it or lose it. The nervous system has a great deal of plasticity and a kind of built-in efficiency that eliminates things that are unneeded or unused. Useful things are reinforced and what is not used weakens and may cease to exist altogether. Bind up a monkey’s arm so he can’t use it for a year. When you free it, he isn’t going to go right back to using it. Perhaps over time he will, but at first it will look as if he has quite forgotten he even has it. This is because for most intents and purposes he has forgotten. These kinds of changes in the brain can happen very quickly. As one neuroscientist said:
The visual cortex is responsible for seeing things. When a person is blindfolded for a week the activity level in the visual cortex initially declines precipitiously but is then taken over for other activities such as reading braille with one's fingertips. This occurs less than a week after blindfolding with dramatic improvement in ability to read Braille. Visual cortex activity becomes associated with using the fingertips to read Braille. It takes a few days for a person to recover sight after the blindfold is removed. This is strong evidence for the plasticity of the brain.
The intuition seems to be that my injury involves only the point at my back where my spine was crushed. My body has just shut off, as if by a light switch. Everything above the injury, however, is just as it was. Wrong. This injury is of tremendous significance as an event in the brain. It involves far more than just motor and sensory neurons. It is so much more profound than anyone around me seems to imagine. It reaches down into my deepest emotions, dreams, aspirations, and affects my ability to express, to be, who I am.
Millions, more likely billions, of connections in my brain now have no place, and don’t know what to do with themselves. Crackling like snow on a television screen. Take a giant saw and cut Manhattan island in half the long way. Every phone line, electrical line, gas line, steam pipe, water line, and fiber-optic cable. Now build a giant wall there. Is everything else still the same? Millions of little deaths in my brain. The philosopher Daniel Dennett said “The purpose of our brains in to project into the future. It’s to foresee the future and have plans and hopes about the future. And those projects and plans and anticipations make us who we are.”
I’ve realized that even though I may end up dead this work will have a great deal of use for the loved ones of people with new spinal cord injuries. It might be generally felt that it is not a proper book for the newly injured because it hurts too much or is negative or what have you. But the truth about this injury is like death- try as one might not to look at it, it’s there. Then again, we have already seen how it’s possible for people to deceive themselves about reality and of course that’s nothing new in this world. I’m getting off course, but all of this leads to the next section.
My capacity for remembering people’s names and how I know them seems to have been affected. I speculate that this has something to do with the fact that many of the distinctive characteristics of my interactions with others are no longer there, so I do not have the normal repertoire of associations to assign to people. What I mean is the interplay between me and others is limited in certain ways now, so we have exchanges with spoken language, but not so much in other nonverbal ways, so the number of ways I can distinguish and categorize my experiences with others has been diminished. Looking back, it seems many of my memories of others from the past are tied to experiences I had with them and ways we interacted more than conversations we had. I remember not only how they walked up to me, for instance, but how I walked up to them. How we ran together, or wrestled, or played, or swung on swings, or cooperated in doing some work. People stood out with respect to each other in various ways.
And really even though I am far more observant and self-aware than most people I really cannot even come close to understanding what is happening to my brain. Why? Consider the following example. Have you ever noticed that once in a while you remember something from your childhood that is totally random and is brought to mind for reasons you can’t explain? Think right now of some obscure memory from the very early part of your life. Now, what would it be like if ten minutes ago that memory had just disappeared from your mind? If you had just never thought of it again? It would be like precisely nothing. So that’s part of what I mean that I cannot understand what is happening to me because so many things in my brain are dying off and disappearing all the time. A vast number of habits. Skills. Rehearsed, ingrained behaviors that have had their patterns laid down in the brain since childhood. Left to atrophy and disappear from my brain forever. My behaviors, personality, slowly being decimated. Slowly, surely, huge parts of me dying off and I will never even be aware of a great deal of it. Is it reassuring that I will never even realize it, or is it terrifying?
Between the idea
And the reality…
Between the conception
And the creation…
Between the potency
And the existence…
Falls the Shadow
Nietzsche says, “God is a rough-fisted answer, an indelicacy against us thinkers- at bottom merely a rough-fisted prohibition for us: you shall not think!” The same is true of the idea that we have a “soul” that gives us our personal identity. I dispense with the “soul” outright and from the beginning. It’s a primitive, simplistic, and vacuous idea. If you believe in this “soul” your philosophy rests upon a foundation stone made of air and you go wrong right from the start. Such ideas are what lead people to say things like, “People can lose their possessions, but knowledge can never be taken away.” That could be falsified by a neurosurgeon with a scalpel. It’s a remnant of the soul superstition that many tend to talk about identifying with the body in a pejorative way. The general sense is that there is something higher to identify with. But such thoughts are mistaken, mostly because the majority have never really taken the time to think deeply about such matters. Theirs is just the default position. Our “selves” or “souls” or “identities” can be mutilated and disfigured just as surely as our bodies can. Parts can be cut off. Parts can be paralyzed or locked inside of us forever.
We are happy when for everything inside us there is a corresponding
something outside us. -Yeats
A fundamental position that vocal disabled people take is that they have lost nothing that is essential to their humanity. A paraplegic is just as fully human as any other person, they will say. Once again, a person can pick and choose, but at what point do we lose something fundamental? What is essential to our lives? So if a paraplegic has not lost anything essential, how about a paraplegic with no arms? Then make him deaf, blind, and mute. Then paralyze his face. Has he still lost none of his humanity? Is he still the same person? Of course not.
So what is a person, really? I’ve never found the philosophical problem of personal identity particularly interesting. In some senses we change over time and in some we stay the same. The thread that runs through our lives from the time we are babies until we are old and die is as thin as can be. Many carry around the idea that one can be identified with one’s mind. This seems to me a point that could be argued endlessly, because it is ultimately a question that will hinge on what things about a human being one chooses to emphasize and value. I’ll talk more about this in the next chapter. What I will claim for now is just that many who would purport to hold such a view would quickly run into hot water when questioned. For my own part, I have come to feel that identifying a person with his mind is simply absurd. To deny this is to deny that personality and the expression of emotions, among many other things, were not important parts of who I was.
Who will say that running, and jumping, and playing, and doing all of the things I used to do were any less essential to who I was than what I have left? Than the life of the mind? Our minds are what distinguish us from other animals but this does not imply that being a mind is all there is to being human. We often tend to behave in ways that give us the reactions we want from others. People want to deny this and say that they “don’t care what anyone thinks”, but that’s just false. If you woke up tomorrow and everyone in the world didn’t like you, you would care. Something else I’ve noticed is that in many ways we become what others expect us to be. Marge Piercy perceived this when in her poem, “Barbie Doll” the healthy young girl with fat legs and a big nose was “advised to play coy” and “exhorted to come on hearty”. It’s an unforgettable poem. In short, society in part dictates what personalities are available to others based on much that has to do with the way they look. You may want to say that this is shallow or cowardly or whatever but you’re just not thinking. People just don’t respond the same to the ugly. Obese, dirty guys can’t get away with the same behavior towards women as strong, beautiful ones can. That’s just the way it is and will always be. I’m not sure I’ve made this point well but I find that when I try to be myself and show my personality like I always used to, those around me often just get very confused and uncomfortable and have no idea how to react to me. Maybe what I’m trying to say will become clearer later on.
Getting better suddenly and being in a working body would take a long time for a paraplegic to get used to and the longer they had been paraplegic, the longer it would take. They would have no idea how to use body language and interact with others like normal able-bodied people do. Just as people show strange reactions to me now, the magically healed paraplegic would experience intense culture shock. Gogol wrote about an awkward man who “didn’t know where to put his hands, feet, or any other part of himself.” That’s what a magically healed, long-time paraplegic would be like. A personality has a tempo. It has a flow and a rhythm. Mine is halting, stunted. Not only is much of my personality imprisoned, but much of it that I try to express simply doesn’t work properly. It doesn’t come off right without the right gestures, and movements. I present ridiculously sometimes, because I want to make jokes, or do something spontaneous, but the delivery is feeble, flat, and pitiable.
Expressing ourselves with our words and expressing ourselves with our bodies are two things that are fundamentally different in kind. One can never replace the other, so what I have lost is irreplaceable. Much of what can be said with the body can be explained in words but much of it cannot. A stack of papers with black dots on it explains a symphony but also it does not. That stack of papers and the actual coming-into-existence of the symphony are not identical. Trying to explain things we might otherwise express with our bodies has a completely different effect on people, just like handing them a stack of papers and taking them to hear a symphony performed are two different things. One does not say to a woman, “Imagine I was standing next to you and moved closer while I turned the front of my body more toward you. I’d be wanting to gauge your response and see if a more forward sexual advance was warranted. Tell me what your reaction would be.” Camus says, “You know what charm is: a way of getting the answer yes without having asked any clear question.” I choose sexuality as the example here because its workings are often purposely not explicit, so we see the sharp contrast more readily. But we use nonverbal communication all the time, constantly, every day we are around other human beings.
“There are a lot of mountain climbers trapped inside bodies of people
behind the counter at Kinko’s.” -Rollins
My expression of who I am becomes often sterile, ungainly. Lacks grace and subtlety. Compare a ballet dancer to a “dancer” in a wheelchair. Or better, wrap a ballet dancer in a sleeping bag, up to his neck, and then tell him to go on stage and express himself. The same comparison applies in my ability to express who I am in this body and this wheelchair. The analogy is clean. If you don’t see it, look more closely. “You just have to find a new way to express those same things.” Thanks. I frequently say awkward and foolish things now because I feel so boxed in, like I have to say something or interact in some way, but I am so limited in how I can do so that I end up trying too hard and being ridiculous. I don’t think it’s mainly a desire for attention but simply an enthusiastic desire to interact with others in an energetic and animated way. But I don’t have the same tools at my disposal so things come out all wrong. It ends up being unsettling and pitiful, like a kid with no arms running on a basketball court and trying to participate in the game. When I try to express myself in certain ways, it’s something akin to charades. Charades is funny because since we are limited in communication one way, we become comical and often ridiculous in trying to get things across in another. But my kind of charades is not funny at all, because I often desperately want to show my feelings but can’t. If you make the point that I would become more natural and graceful over time I will agree. But in that case either I will just had to accept being limited in my capacity to express myself, or the desires will have disappeared.
Watch people in everyday life, at parties, on television, etc. Pay close attention to their gestures and body language, especially people with colorful, engaging personalities. People that do things that make you laugh, or capture your attention in a lively or entertaining way. How many of the things they do could not be done by two-arms-and-a-head? Many things will be glaringly apparent but some will take imagination to divine. What’s harder to conceive is how the inability to do such things affects a person.
Sometimes when I think of my own name, it doesn’t seem to refer to anything I’m familiar with anymore. Clayton? Who is that? I know who he was, but that’s about all.
Those who do not see the loss of a tremendous part of themselves are simply not, to put it mildly, very sharp. They might respond “Absurd! The injury doesn’t change who you are. I’m myself. This is who I am!” But as Wittgenstein says, “The answer to this is that one does not define a criterion of identity by emphatic stressing of the word ‘this’. Rather, what the emphasis does is to suggest the case in which we are conversant with such a criterion of identity, but have to be reminded of it.” That is, what is the person indicating? Is being able to say “this is who I am” decisive evidence that a person has not changed at all? Imagine extreme cases of what could be done to a person’s body while preserving in him the ability to make that pronouncement. What I can’t seem to stress enough is how people who have been disabled for a very long time can simply no longer comprehend, if they ever did, this loss of personality and expressive ability. It’s gone from their brains. Am I the same person? No I am not!! I sometimes feel like I have to put exclamation points after more or less everything I say in this book. But plenty of you are sane and will see exactly what I am talking about, on the whole if not in all its detail.
Many speak as if I should not be concerned with how others react to me but with who I am. But the distinction between who we are for ourselves and who we are for others is blurry to say the least. Maybe some monk in a cave somewhere can dispense with the give-and-take that exists between people and helps create our ideas of ourselves but I’m not that kind of being and don’t want to be. What would it mean to have intelligence, courage, or patience, or to be attractive, fun, or exciting, without gauging ourselves against our fellow human beings, and observing their reactions to us? Imagine a comedian who has never gotten a single person to laugh. Is he funny? The fact is that I’m not as attractive, fun, exciting, or valuable to others as I was before and like with so many other things connected to my condition, to deny this is to be forced into conclusions no sane person would ever accept.
What does it mean to have a skill and not be able to use it? To be a carpenter who can never touch a tool again? What does it mean to be a paraplegic who loves to run? What do we make of such ideas? I used to be a running, jumping creature. Am I still? But maybe you continue to think mind equals personality? As long as you can communicate what is in your mind you still have your personality? Wittgenstein taught that we can discover deeper truths about our concepts by giving examples that bring out the absurdity of beliefs like that. Imagine the following exchange:
A: “I met the most remarkable guy the other night. He had the most fun and exuberant personality of anyone I have ever met. I’m talking about energetic, vivacious, lively, spirited, irrepressible. Just a wild man! Making the girls giggle like crazy with his antics. He was the life of the party like nobody I have ever seen.
B: “What was his name?”
A: “Stephen Hawking.”
My personality was something I spent years creating. Along with my mind and body, it was part of my life’s work. It’s true that I accomplished a good number of things, but my greatest accomplishment was myself. It was the thing I put all of my heart into and wanted to share with the world and now it’s imprisoned inside of me. When people tell me I just have to find a different way to express it, I want to SCREAM!! Do you know Joseph Merrick, the “elephant man”? One of his doctors said the saddest thing about him was that he could not form expressions with his face. He could not smile. I expressed myself with my body! I showed joy with my body! I was a fighter and a wrestler, a streaker and skinny-dipper. I was a runner, a jumper, an expert weight-lifter, and yoga master! An adventurer! A thrower of axes and a hefter of logs. A fisherman who wrangled with sharks and octopi. A wearer of giant pumpkins! I was so much fun! A hearty embracer of friends. A climber of trees and of mountains. I loved to throw big rocks! To dig and build and move heavy things around. I was so strong! I loved to play with children! I would catch my cousins in my arms, all three at once, and run them in circles, or bear them proudly around on my shoulders.
“It’s not what you are, it’s what you don’t become that hurts.” -Levant
I am Horowitz with no fingers. Phiddipides with no legs, Shakespeare with no pen. Michelangelo with no chisel or paintbrush. I am not what I am.
“Who alone has reason to lie himself out of actuality? He who suffers from it.”
Since I have only been a paraplegic for a relatively short time my mind has had a lot of organizing to do where my new life is concerned. Every now and then it casts a net, to borrow a metaphor, into the motley whorl of my experiences and applies a concept to what it circumscribes or draws together. So it came to me clearly for the first time, just the other day, what I feel like when it comes to expressing my feelings and attitudes about my new life to other people, able-bodied and disabled alike: I feel like I am on trial.
The charges: I feel the way I do only because there is something wrong with me emotionally, psychologically, spiritually, or intellectually. The possibilities are there, but I just can’t see them. My attitude, which is my real disability, would be different but for some deficiency, shortcoming, or lack of depth. I am confused and my grief, or despair, or depression get in the way of clear understanding and “seeing the light at the end of the tunnel”. If I got therapy, or took drugs, or talked to some other crippled people I would have a chance of gaining the perspective that I lack. Someone always knows something I don’t. Everyone always has the answers, and when I try to express myself concerning the gruesome, monstrous thing that has happened to me I almost invariably find myself on the defensive and if I am to be taken seriously I have to somehow accomplish the seemingly impossible task of first convincing those around me that I am sound of mind. And where the disabled are concerned, one need only think for a moment to see how threatening the idea of my being of sound mind is because they would then have to admit that a person of sound mind could reasonably view their lives as not only inferior, but so bitterly inferior that death is the only answer. They need something to be wrong with me. Indeed there is something wrong with me, but it’s not what they want it to be. I have only one serious problem in life and it’s being paralyzed.
I’ll stop right there and take a step back, because that’s not entirely true. Many people have been absolutely wonderful to me and I understand that they just don’t know what in the world to say or do about my situation and feelings. Largely because there is nothing to say or do, in a certain sense. That is, many do recognize that I am sane, perfectly rational, and understand my situation far better than they do, so at the same time as not knowing how to help they feel they would be letting me down or not being good friends if they stopped trying to make me feel better. I’m getting into something that might be best addressed further on, but to account for the largely antagonistic and confrontational tone of this chapter, I’ll just say that I’m concentrating here on the generally problematic or troubling people and views I have run into.
A certain medical marvel which has baffled every neurologist, psychiatrist, and doctor in general is worth mentioning briefly here. It is the question of how every person who sustains a spinal cord injury spontaneously becomes so profound. Truly, the mystery is deep because somehow no matter what problem I might have with the way things have changed in my life, they have some far more profound viewpoint they can bring to bear to make everything just grand. So if I am unhappy about not being able to feel my penis, for instance, that is just because I am shallow and lack a true and deep appreciation of what making love to a woman really is. And of course everything else that I have lost is just incidental. A profound view of life would allow me to see that. These lofty souls fly in the ether, far above the rest of us. How could I possibly hope to fathom their depths? What do you think dear reader? Can you unravel this mystery for me?
I used to think it was the religious in their defense of God’s existence and the truth of their religions who had perpetrated the most convoluted, dishonest, self-deceiving, denial-laden act of eviscerating reason and truth hitherto achieved on Earth. But I was wrong- it is the disabled. The fantastic extent to which they distort, pervert, and turn reality on its head boggles the imagination. It’s absolutely astonishing and leaves one at a complete loss. So my general feeling is that even though the truth is right in front of me, and in front of everyone else as plain as day, somehow I find myself constantly at odds with people who want to stridently insist that I am not seeing things clearly. Perhaps the hardest thing to deal with is how often people say things to me that they do not really even believe. That’s the corker. I think of the expression “an elephant on the dining room table”. I see the elephant. Everyone else sees the elephant. Then they all start trying to reason it away. But it’s not an elephant in this case- it’s a brontosaurus. Part of what is so frustrating about trying to address this topic is that people are so inconsistent. They will say one thing, but when pressed will flip-flop, change things around, and do anything to avoid certain conclusions. If humans were as diligent, persistent, and indefatigable about improving themselves as they are in their efforts to evade reality, the world might be a different place.
Think first of how many lies even most able-bodied people need to get along in life. “Karma.” “Everything happens for a reason” (in the sense of some overarching purpose). “If I believe in Jesus, I will go to heaven.” Pick your favorite. And again, how deluded people are about where they stand in relation to others. Like for instance when 90% of incoming law students predict they will be in the top 10% of their classes. Logical fallacies are a huge problem, and there are a whole other slew of what are called cognitive biases and effects that psychologists have discovered. They’re all over the place. We fall into error because of them constantly, almost every day of our lives. Philosophers are trained to be aware of these things, yet still they are extremely hard to avoid, even if you know about them. Now try to think how much more prone to delusion you might be if you were doomed forever to be fifty pounds of two-arms-and-a-head dragging around a corpse. You might have to come up with some whoppers. Here’s a definition of brainwashing: “Any systematic effort aimed at instilling certain attitudes and beliefs in a person against his will, usually beliefs in conflict with his prior beliefs or knowledge.” What could be more “systematic” than the effects of a spinal cord injury? They are there, working, exerting pressure every waking second of every day. Limiting, corralling, boxing in, and reshaping the injured person’s conceptions of reality. Before I got injured I didn’t have much of a concept of the disabled, but I surely would have predicted that their perspectives were somewhat skewed. And so it is.
Next, think of what happens when there are no outside forces to control people’s ideas about themselves and the world. If you think you are the fastest person around, a footrace will quickly give you the answer. But some things never get tested. So people go around believing that there is a spaceship behind the comet, that Jesus is on it, and if they kill themselves they will fly away with him. Stories like this abound on our insane planet. But with the disabled, outsiders generally reinforce the falsity. What I mean is that nobody ever bothers to set the disabled straight when they make outrageous claims. Why would they? What purpose would it serve? Imagine a crippled man getting on stage in an auditorium and telling everyone how he climbed a mountain and that there was nothing he could not do. Hooray! But then some lady gets up and says “Come on now. You didn’t really climb the mountain. Some other guy climbed it, and you just hauled yourself up after him on a rope.” She will certainly lose some friends that day, but of course she will be right. Nobody says, “You know boys, these cripples are getting a little too big for their britches, thinking they can do all sorts of things they can’t. We need to show them just how disabled they really are, so they will learn a little humility.” No, it’s just considered good manners to let the disabled make whatever claims they like, and not to contradict them. Because really, it’s not going to matter much when you’re joyfully bounding through the fields later with your beautiful girlfriend and generally having a good old time, right? They won’t be there! If I were still able-bodied and a paraplegic told me he could do everything I could, I would just think “Looks like being crippled fucked up his mind too, because that’s insane.” I’m not sure what I’d actually say to him, but I’m know it wouldn’t be that, just as I know I would not devote any time to setting him straight. I really don’t like feeling forced to pander to people’s illusions so I’d probably just avoid him. So the disabled are basically allowed to go around saying whatever on Earth they want. They acquire a kind of de facto moral infallibility because nobody is going to argue with them.
I will tell you one of the great tragedies of paraplegia and spinal cord injuries in general. Though I said earlier that I think it extraordinarily unlikely that I would have been cured if I had lived, I also think it quite likely that science will one day be able to regenerate damaged spinal cords. If all the stops were pulled out and resources were abundantly available, it might be within just a few years. I don’t know. The tragedy has to do with the fact that so many people with spinal cord injuries feel intense desperation and pain just like I do, but in order not to be alienated even more, they have to put on airs. They are reinforced for delusion, denial, and falsehood. Think of it. One day you sustain a devastating injury that leaves you grievously disabled. You are terrified, confused, and heartbroken, and the last thing you could possibly stand would be isolation from other human beings. But people desert those who are constantly negative, while on the other hand positive attitudes are attractive. So you just elicit reinforcement from others as best you can. It goes something like this:
Cripple: “I refuse to accept limitations.”
Society: “Atta boy!”
Cripple: “I’m not disabled.”
Society: “That’s the spirit! You are so strong! You are so courageous!”
Cripple: “I can do everything I could do before, I just do it differently.”
Society: “Go get ‘em champ! You’re amazing! You’re an inspiration!”
Don’t make the mistake of thinking that I generalize too much about the attitudes of the disabled. I’m just focusing on certain kinds of views and attitudes. Some disabled people will of course think I’m a monster who is completely out of his mind. But others will agree with a great deal of what I have to say and find relief in reading it, for a variety of reasons. Not that it’s rosy or reassuring, but just that there is a lot of truth in it and they are sick of the lies. My friend who is paraplegic has a name for the disabled who say things like those I mentioned just above: “youcanstillers.” She recently told me, “The sick thing is I might say those things in public because otherwise one sounds so embittered and miserable.” But truth is just truth, and so the question comes up of why it’s valuable. It might sound like an odd question but it’s just a fact that if you want people to behave in certain ways and have certain attitudes, lies are sometimes far, far more effective than truth. You can easily think of one-million examples yourself. So in this case, truth is valuable in part because many people with spinal cord injuries say the only reason they don’t kill themselves is that they have hope for a cure. Others say it’s because though they hate their lives, they are too frightened to end them. Yet others who are so disabled they would have a hard time even doing it physically have said they are just waiting until assisted suicide is legal. How do I know this? Because they tell me! They say these things! But if everyone thinks being a paraplegic is fine and dandy, there will be no sense of urgency on the part of those who have the power to help us. And this should complete your understanding of the great tragedy I have been explaining. Every time those who desperately hope for a cure hear things like “I’ve never felt disabled” from prominent paraplegics, their hope dies a little because the world needs to know the truth before anything will happen. Our cry is “Help! Help please! Can’t you see that it’s a nightmare? Won’t anybody listen? It’s horrible. Help! Cure us!” But instead of the situation being viewed as the direst of emergencies, we get, “It’s not so bad. Look at that guy. He’s a paraplegic and he’s happy. He plays tennis. You just need to find a way to be happy too.”
Just because I want that to be very clear, I’m going to say it again. Disabled people are compelled to display certain attitudes because doing so helps them satisfy profoundly human, very legitimate needs, like having the love, support, and acceptance of other human beings. But in so doing, they allow the world to view paraplegia, and spinal cord injuries in general, as something other than horrible, unthinkably nightmarish injuries that devastate and profoundly diminish the quality of hundreds of thousands of people’s lives. And when the world does not see the situation as an emergency, it does not respond like it would if it knew the truth. That’s the tragedy, and that’s the reason truth is important and valuable here. And that’s why even though what I’m writing is in many ways terribly unattractive, it is worth ten-thousand times more than all lies in the world.
I’ll comment here on a problematic pattern I have observed in my dialogue with others. The pattern can be generalized but I’ll use a specific example. First, I’ll explain a term: “begging the question”. Most people don’t know what this term means, apart from a meaning that started as an error and became popular. The common view is that “begs the question” is synonymous with “prompts the question” or “suggests the question”. The only reason this use could be considered correct is because so many people happen to be wrong about the correct meaning of the term at the same time in history. One begs the question when, in arguing a point, one assumes as a premise precisely what one is supposed to be arguing for. A clear example involves abortion:
Pro Choice: A woman has a right to make decisions concerning her own body.
Pro Life: You’re begging the question. Precisely what’s at question here is whether an unborn fetus is merely a part of a woman’s body over which she should have absolute dominion, or a person unto itself.
So an example of the pattern I mentioned would go something like this: some paraplegic says something like “I’m a survivor, and that’s all that matters.” Then I might say something like “Yes, and a person locked in tiny cage in a dark basement for their entire lives is a survivor too, until they are dead.” The response might then be to derisively brush off the example by saying something like “Are you trying to say that being paraplegic is like being locked in a tiny cage in a dark basement forever?” Yes and no. That is, being locked in the cage may be worse in some senses, but the point of the example is to show that there are times where being a “survivor” can be clearly seen not to do the kind of work one wants it to do- that of justifying life. That is, this example creates a small crack that can be used to put a wedge in. So by dismissing the cage example, the paraplegic is begging the question concerning the point that has been raised by it. The example shows, one would hope, that we can probably all agree that there is a great deal more needed to justify life than merely being a “survivor” and that once we see that we can reject the idea that being a survivor necessarily counts for anything at all, and the place we want to draw the line with “life worth living” on one side and “life not worth living” on the other should be open to discussion. There well be a number of examples like this throughout this book and the reader will do well to be able to spot what is going on in them and what my intention is without falling into error. So given who I am, life as a paraplegic is decidedly not worth living and in that sense being a paraplegic is like being locked in a cage in a dark basement forever. Is one worse than the other? Yes in the sense that if I had to choose one over the other I would choose paraplegia. But I don’t have to choose either. Those that miss the point here will say things like, “Atreus talks a lot but it’s all wind because I’m a survivor and was able to pull through and go on living when he couldn’t take it.” And round and round we go.
Auspicious attitudes convince. We all would rather hear “I can do it.” It makes us feel better, regardless of what the facts are. The disabled can no doubt defy our expectations and impress us, but they also spend a lot of time trying to convince us of things that nobody believes for a second. Like for instance that they live full lives. The mantra is “full, rich, and rewarding”. Say it over and over until you believe it. But what does “full” mean? Maybe we can agree on a definition. How about this: just that nothing overly important is missing? We might admit that indeed they can live full cripple lives, but that’s a different thing. “There are many things he is excellent at. He’s doing about as well as one can do for a cripple, so in that sense he lives a full life.” That’s what we really think, right? No?
It’s not that people really believe people like me can have full and rich lives, and that we can do everything everyone else can, it’s that the hopelessness of our situations makes them think, “They might as well think those things. It’s better than for them to realize how badly they have it.” Think about it. Think about, for instance, when a young woman is kidnapped and held captive for a long time. She is not tortured. She is given ample food, talked to, and allowed certain freedoms. Now when the law comes down on the situation, the girl might say something like “Actually, they really weren’t bad people at all. In fact, they were kind of nice and I didn’t really want to leave.” What happens then? Do the cops shrug and forget the whole thing? Does the district attorney do the same, and then the all laugh it off and let the abductors go? No! They have a name for this: Stockholm syndrome. No, they patiently explain to the girl that, in short, her head has been all fucked up by what has happened to her and that she has to realize that the people who took her away were bad. It’s the same thing with this injury, but the only difference is that since the situation is hopeless, people allow the delusions to persist. No psychologist sits with a paraplegic and says, “The only reason you think your life is as valuable as it was before is because your head has been all fucked up by your condition.” What would be the point? Nobody tries to convince a paraplegic that things are actually worse than he thinks. Things cannot get better for him, so the better he feels about his situation, the better, regardless of how bad we think it is.
Okay so maybe you’re not convinced. You think that paraplegic lives are just as good as other people’s, or at least pretty close. That is, being paraplegic does not reduce one’s quality of life by much, if at all. Well then now is a perfect time to put all of you on the spot, readers. It’s time to examine your attitudes. Let me start with a question. Can one be wrong about what one believes? That is, if I say I believe something, do I have to be right? Is my self-report concerning my own beliefs infallible? Emerson famously said, “A foolish consistency is the hobgoblin of little minds.” But this is not meant as a license to be logically inconsistent, but to emphasize that a person may freely change his or her mind over time. No, the laws of logic are inviolable, so if a person has two beliefs that are contradictory, one of them has to go or there is a problem. And our axiom will be that beliefs imply a willingness to take certain actions, and that the expression of a belief unaccompanied by the commensurate willingness to act in accordance with it is decisive evidence that the belief is not genuine. In short, if you say you believe the rope will hold, but then refuse to hang from it, you don’t really believe it. It’s very simple.
So you really think paraplegics can lead “full, rich, and rewarding” lives? You believe this? Well, I can think of some things you really, really want quite badly. For example, say $2,000,000 in cash? Yes, many people like to talk in lofty tones about how they are above money and it’s not important, but I think I can safely say that many of you would do things for that amount of money that you would never want another soul to know about. And let’s be honest: money, especially in quantities like that, is about as exquisite as anything can be. No again? Okay then, but please go back to your mountaintop and leave those of us who live in the real world to our foolishness. Anyhow, it is just a fact that many competent men and women with advanced degrees make around $50,000 per year, after taxes. So a good number of them will get up, get ready, commute, and work eight hours per day, five days per week, fifty weeks per year, day after day, year after year, for forty years straight, to make that kind of money. And I hope I’m not going out on a limb in saying that there are other things many of them would rather do with that time.
We will start with the young men then. $2,000,000 in cash is sitting on a table in front of you. Which one of you will step up and have his penis chopped off for it? Come on, toughen up! Being dickless is nowhere near as bad as being a paraplegic. Not even remotely, remotely close. No, I think it’s safe to say that few will step up. But notice that in not being willing to chop off his penis for $2,000,000, a young man is in effect saying, roughly, that he would work full-time jobs for forty years straight and give up a life of wonderful, financially independent freedom in order to avoid losing something that does not even remotely compare to what I have lost. Maybe a particular man would not necessarily be willing to work through life in that way, but we know that many end up doing precisely that. This is just on example but it could be pushed much, much further. If you don’t like money, what do you like? There must be something you think is tremendously valuable. What would it take for you to let someone paralyze two-thirds of your body? To live as I described in the first chapter? And I’m not talking to eighty-year-old people who would use the money to send their great-grandchildren to college. I’m talking about young, promising, healthy people with decades to go before they approach old age. Please don’t try to deny that we compare the values of various things. There are many things we want very much. They have great value. If their value to us is greater than the value of something else, we will trade. So if you want to claim that being paraplegic does not deduct significantly from the value of a human life, there should be any number of things you can think of that you would take in trade for becoming a paraplegic.
One more, since people like so much to point to Stephen Hawking when trying to enlighten me about the wonderful potential my life still holds. I have a wand that will instantly make you the world’s foremost expert in any subject you wish. In any five subjects! What do you like? Biology? Mathematics? Psychology? Take them all. Here’s the catch- you would have to spend the rest of your life like Stephen Hawking. At this point, I think about all he can do is twitch his cheek and move his eyes to communicate with his computer. And just for kicks, I’ll throw in $1,000,000,000 in cash to sweeten the deal. Alright, step right up! Wait a minute. Where’s the stampede of volunteers?
You insolent plebians! How dare you suggest for even a second that a billion dollars doesn’t span the difference between the value of your life and the “rich and rewarding” life of Stephen Hawking, one of the most renowned theoretical physicists of our time! Who the hell do you think you are? What have you done with your measly little life that makes you so high and mighty as to compare yourself to a man in whose mind galaxies collide and new worlds are formed? He postulated Hawking radiation from black holes- what have you postulated lately? And do you have any idea how many starving orphans you could save with that money? How many schools you could build, how much cancer research you could fund? You disgustingly selfish, cowardly, despicable wretch! I’d like to spit in your face!
As a side note, the example of Stephen Hawking is amusing too because what do you know about him? What about his day-to-day? I will err on the low side and say that I could probably at this moment write down more about his life and work, off the top of my head, than 99% of the population. But it’s also true that, by the standards of professional physicists, I don’t know jack-diddly-shit about Stephen Hawking’s work. It’s like my piano-playing. Average people thought I was pretty good, but trained pianists knew instantly that I sucked. People create happy little rainbows in their heads about Stephen Hawking, but they don’t know a goddamned thing about him, and they wouldn’t be him to save their lives. So often people seem to think they are helping me with the things they say, but really they should be thanking me for being so patient with their foolishness and, when it comes down to it, dishonesty.
Anyhow, we are looking at the question of what all of you really “believe” about being paralyzed. I’ve noticed that in my interactions with others I sometimes find myself having to convince them of things they already believe! What strange beings we are! So concerning my injury, I’m pretty sure there is absolutely nothing on the entire Earth one could give to most young, healthy people that would convince them to live the life of a paraplegic. Not money, not power, not fame. Not love, enlightenment, or the secret of the universe. Not anything. Of course this is going to be complicated by the belief some have that they could have a reward in heaven for making such a sacrifice, but those people do not concern me. Here’s a quote from a paraplegic: “I’m here just one very small timeframe of life, and my disability while it’s inconvenient for me right now, and it’s frustrating there’s a lot of days that are just kind of bummers, but when I look at that compared to eternity, it’s a non-issue.” Yeah. I hear there will be free ice cream in eternity too. Back to the point- you cannot at once admit that you would subtract huge amounts of value from your own life, forego tremendous rewards and benefits, and go to other extraordinary lengths to avoid being like someone, and still talk about how “full” and “valuable” their lives are. No, the danger of being doomed to my fate would have you in the grips of mortal terror, frantically struggling, clawing, thrashing to escape. You know it. I know it. Everybody knows it. So I’d like very much if people would bear this in mind and perhaps be a little cautious before so shamelessly holding forth at length about how good the lives of the disabled can be, because you certainly don’t believe it. Not for a second.
Just as we often wrong in thinking we have privileged knowledge of our own beliefs, we also tend to think the opinions of the disabled are privileged when it comes to their conditions. Congressman Langevin said “Certainly when I speak on disabilities legislation, I have credibility on the issue. I don't have to convince people on the floor that I know what I'm talking about or that this is something that will help the disability community.” If that second sentence is true, we may be in trouble since he also said the disabled could achieve “any goal or desire they have to work in any field”. Oh yeah, how about the field of being a lumberjack? In some ways the disabled can speak authoritatively about their conditions, to be sure. But in other ways, and again this might sound strange, they are not privileged in the slightest. And more strongly, they are in fact in many ways simply unable to realize certain facts about how they compare to able-bodied people, just by the very nature of the situations they have lived in for so long. They tend to only see life in terms of the possibilities that exist for them, and in general it’s not very psychologically productive for them to think of those that are not. Do you spend much time thinking what it would be to have eight arms? Really getting in there and imagining all of the little subtle details of it? No. So when they say they are capable of doing or experiencing all that others can, they are simply underlining that they do not bother to consider possibilities that don’t exist for them. Their view becomes somewhat tautological. “What I can do is all that is possible, therefore I can do all that is possible.” But as Maslow said:
The study of the crippled, stunted, immature, and unhealthy specimens can
yield only a cripple psychology and a cripple philosophy.
That’s not to say that lifelong paraplegics cannot have great attitudes, be inspirational, and so on. What I mean is that they are in no position to judge the value of things that they cannot comprehend. Just as able-bodied people cannot comprehend what it’s like to be a paraplegic, lifelong paraplegics and quadriplegics simply cannot grasp what it is to be able-bodied. I’m not saying that lightly. The difference is biological. They have different brains. A whole body, to them, is like a piano to someone who has never played one- they don’t know how to use it. They don’t understand it. Lifers develop all of their hopes, desires, aspirations, relationships with others, and in short all of their concepts of existing in the world, in accordance with their disabled conditions. The following statement is mine, but I set it apart:
A veal calf never knows what it is to be a lion.
Or as the Italians say: Chi nasce asino non può morire cavallo. Who's born as a donkey can't die as a horse. Lifers literally, concretely, absolutely, positively cannot comprehend able-bodied life. Their brains are not wired that way. They do not understand the experience of being able-bodied- neither the subtleties or much of what, to observers, is overt and glaring. They can try to imagine it, but they don’t even come close to comprehending the potential that exists there. Something quite like how a person born blind cannot say what it’s like to see. In my line of sight right now there are tens of thousands of details. Hundreds of shades, thousands of objects and parts of objects. Can a blind person be made to fully comprehend that? Can he get even close? It’s the same exact sort of thing.
I’ve subjected some of my written feelings and opinions to the scrutiny of other people with spinal cord injuries. Many responded like rabid animals, or members of an angry mob. They attacked indiscriminately, with no understanding or coherent rationale. Also, my position on things is certainly the ultimate insult to the disabled, because I am basically telling them that I think their lives are not good enough for me. Even with all the advantages I have, I am still basically saying to all people with similar or worse injuries than mine: “I’d rather be dead than be you.” One doesn’t have to try too hard to imagine how this might breed hostility.
And one more thing along those lines. Like I said above, I can already predict how many will react to what I’ve written here, especially certain members of the “disabled community”. I positively know many of the things they wall say because I have heard a lot of them already. So I will preemptively answer roughly 90% of their objections with the following sentence: “I never said that or even implied it.” Something I have sometimes felt is that if only I can say things clearly enough, if only I can make my words like crystal, others will simply have to draw the right conclusions from them. I always had a dream of disabusing the world of certain illusions and felt this tremendous tension inside of me that wanted to be released- if only I could be heard aright, everything would change! Of course that is ridiculous though, and so I’ve had to come to accept that no matter what I say, many people, perhaps the majority, will just get it wrong. That is, attribute views to me that I don’t hold and never held, draw the wrong inferences, pull things out of the air, etc. I have not been an author for long (and won’t be one for long!) but I guess this is something many who write controversial things have at one time or another had to come to accept. In short, all you crazies and stupid people out there just crazy and stupid yourselves silly! Nobody can stop you. Anyhow, I’ve come up with a few general headings under which to categorize things, though everything does not fit so neatly as one might hope, but it’s usually the case in situations like this that if things fit too neatly, you are overlooking something. In fact, that precise principle will come up soon in connection with a common error many disability enthusiasts make.
So the first fallacy is the “Shit-Eating” fallacy. I considered giving it a different name like the “Strength” fallacy, but have kept the name purposely, even though I know it is tasteless and obnoxious. I’ve done this because the views wrapped in the fallacy can have such strong emotional appeal and be so prevalent and liable to cloud your understanding that the name really needs to stick in your head. The fallacy is basically to emphasize the idea of strength while completely ignoring the question of value or desirability. The name comes from an example I thought of. People often talk about how living a disabled life requires strength. But I’ll tell you something else that requires strength, grit, determination, and willpower. Eating ten pounds of human shit. The example is so disgusting and repugnant because I don’t want you to ever forget it. Of course there are people out there that like to eat shit, but they are not invited to the potluck dinner. So the moral should stand out saliently: just because something takes strength does not mean it is worth doing.
I can already hear the objections to this, so let me be clear. It’s perfectly possible for a disabled person to see a goal as worthwhile and to employ a great deal of strength in bringing it to fruition. I’m not disputing that at all. The fallacy is to assume that telling someone to be strong means anything at all if that person is not convinced of the value of what they should be applying their strength to. Consequently, any suggestion that choosing to live is the strong, courageous, determined, never-say-die, warrior-like, survivor-like thing to do means nothing to me until I decide whether it has any appeal to me. Similarly, any suggestion that choosing not to live would be weak, cowardly, the “easy way out”, would make me a “quitter”, and so on, really means nothing to me either. Where the question of my courage is concerned, my own conscience is the alpha and the omega. And one man’s courage is another man’s cowardice. So if anyone wants to tell me that not to live is cowardly, I will just regard it as irrelevant and absurd, just like I would if someone told me I was weak for not eating a ten-pound pile of shit. So maybe you will respond that striving and exerting effort are valuable in themselves regardless of what one is trying to do? Then I suggest you go out and chain yourself to a full-grown giant sequoia, twenty feet in diameter, and not give up trying until you pull it over. The point is that something being impressive or hard to do, by that fact alone, does no work at all toward convincing one of its desirability. Some guy collected over 5,000 different barf bags. Impressive! It surely took a lot of hard work and dedication, so it must be worth doing. Good. Go out and start your own collection.
Before I get into some of the things people say, I’ll briefly introduce a concept: the “cutesy slogan”. It’s basically a bullshit, feel-good, meaningless piece of nonsense people like to parrot, and which is usually easily refuted with a simple counterexample. I despise the cutesy slogans, so I’ll point them out. On with it then:
“Anatomy is not destiny.” Cutesy slogan. The motto on a publication about disability. A reaction to Freud’s “Anatomy is destiny.” Refutation: mankind is anatomically destined never to clear 1000 feet in the high jump, therefore the statement is false. And there are a million senses in which the anatomy of a paraplegic is his destiny, in profoundly significant ways, as distinct from if he were able-bodied. Meaningless, ridiculous, feel-good nonsense.
“I have yet to feel that I have a handicap.” Said by a paraplegic. I have yet to “feel” that this person is not completely out of his fucking mind.
“It’s not what you lose, it’s what you gain, and so it was a great thing.” John Hockenberry, talking about sustaining the same injury as me. This is one of those things that can make you feel embarrassed even if you hear it when you are all by yourself. When I first got injured, someone told me to read his book, “Moving Violations”. I did and since then have paid close attention to him and come to the reluctant conclusion that he is among the most odious and unattractive characters in this whole disabled circus. Here’s a quote from Victor Frankl, talking about his time in a Nazi concentration camp, “Some men lost all hope, but it was the incorrigible optimists who were the most irritating companions.” More about Frankl and Hockenberry below.
“I’ve actually done more since I’ve been in a chair than I did able-bodied.” and “To my amazement he said his horrific accident may have been the best thing to happen to him because it made him a better person and a better student.” Congratulations? Sorry you had those particular problems, but the scales aren’t weighted like that in my world.
“Walking is overrated.” As if not being able to walk was anywhere remotely close to the sum of my problems with paraplegia. This one makes me kind of sick to my stomach. It is the kind of statement that is liable to make people who are working to get the world on our side for a cure lose all hope. Something like a starving man with no kind of voice or power watching others decline food on his behalf. “He’s not hungry, thanks.” Can you see it yet, fellow paraplegics and quadriplegics who hate the lies and want the world to notice and help you? As unattractive and horrible as this book is, and however monstrous of a person many might think I am for having written it, I am giving a voice to something that needs to be heard, that wants more than anything to be heard.
“You are not your legs.” Yeah, and Shelley’s skylark is not its wings:
Higher still and higher
From the earth thou springest
Like a cloud of fire;
The blue deep thou wingest,
And singing still dost soar, and soaring ever singest.
Really, it’s almost like clockwork any time I see an interview with a person living with a spinal cord injury. They go along, saying reasonable things, and then the inevitable bomb: “Just because I’m in a wheelchair and I’m paralyzed doesn’t mean I can’t do the things that anyone else can do.” No, it does. When I was in intensive care I said things like “I believe I can still have a good life.” I talked about playing wheelchair rugby. Thinking back, I have no idea why I said those things. There was a vacuum inside of me where the content of what I was saying should have been.
“I don’t view myself as disabled. I have a disability only because the law says I have a disability, and that’s what helps me qualify for certain things. But do I view myself as that, do I view myself as not able to do things, or not competent, or not able? No, not at all. I’m still the same person I was before.” A paraplegic. Italics mine to underline that this is more of the same, lies and confused insanity. Something tells me he doesn’t send back the social security check every month with a note that says “Thank you but there must be some mistake, I’m not disabled.” And along the same lines, how much of this talk do you think figures in at trials where paraplegics are pressing multi-million dollar claims to compensate them for their injuries? What do you think, honest reader? Something tells me it dries right up! Why aren’t “I’m not disabled” paraplegics busily employed as expert witnesses for auto makers to reduce the verdicts in those frivolous lawsuits?
“The biggest problem actually is people who have been in a chair for a very long time because in order to survive psychologically they have to accept, ‘OK, I'm going to have to spend my life in a chair.’” Christopher Reeve talking about the fight to get spinal cord injuries cured. That is, those people get in the way of things. They rob the issue of its urgency with their crippled perspectives.
“Things Utley can’t do as a result of his injury? If you come up with something, let us know. We won’t hold our breath.” Said in an article about Mike Utley, former Detroit Lions lineman who is now a quadriplegic. I won’t even bother with the counterexample to this one. “There is only one thing Utley admits he cannot do because of his paralysis. ‘I can’t play football anymore.’” You see how people get carried away and write things like this, and how harmful they can be to the cause of getting paralysis cured? And for those of you who don’t know, quadriplegic does not necessarily mean paralyzed from the neck down. It can, but it applies also when the person is at least impaired in all four limbs. Incidentally, Utley was kind enough to speak to me on the phone shortly after my injury. He told me, “It’s really not a big deal.” Mike Utley also said “The only person you can’t lie to is yourself.” And just a moment later “I want out of this wheelchair. If it’s not today it will be tomorrow.” That’s ironic Mike. I suppose you need to say what you need to say. But it was kind of you to talk to me and try to help me feel better. Thanks.
“Paralysis can’t stop his dreams.” More of the same. This is the headline of a story about of a man who is a high quadriplegic, paralyzed from the neck down. He spends almost all of his time in a room in the back of his mother’s house. And I’ll say it again. When we say things like that paralysis can’t stop people’s dreams, it allows us to turn our eyes and minds away from the horrible lives such people live, and to think they’re not in desperate states, in need of help. Of course that’s what we would prefer to do. Here is some text from the story. “He has had his share of scares over the years. He's caught pneumonia four times, has had part of his intestines and his entire gall bladder removed, as well as countless skin grafts, bed sores and ulcers. But he's never succumbed. To those who know him, that makes him an inspiration. ‘He was a fighter, he really just kept going,’ said a former teacher. ‘He had to have a great attitude or he wouldn't be with us today. ... A lot of people would just give up.’” Now, this guy stays in the same room almost every hour of his life. Can’t move hands, can’t move legs. He’s a head. Breathes with the help of a respirator. Inspirational? Think of the word, “inspirational”. The root means to breathe in. Does such a man make your chest swell? Does he fire your fighting spirit, fill you with tonic emotions, and steel your heart with valor? Why wouldn’t he be with us today without that “great attitude”? He can’t kill himself very easily. Perhaps he wants to die but is terrified of death. Perhaps he has asked, and been refused. Paralysis didn’t stop his dream, though. Was his dream to be a head attached to a corpse, and to sit in a room all day, and be unable even to scratch his own nose? But he hasn’t lost the important things, right? Realize that when people write news stories like this, they think they are helping us, or spreading hope or inspiration, but they are really shutting us out in the cold and encouraging the world to turn its back on us.
“Paralysis or any other challenge you face can only define you if you allow it to. You can’t give up on your dreams.” Cutesy slogans. The first works only if we restrict what “defines” a person to things that are entirely independent of, it would seem, anything in the real world. Can a person be in any way defined by being a dancer, a runner, a tumbler, an athlete? Would Phidippides still be Phidippides if he never ran? Would Cziffra still be Cziffra if he had no hands? And as for the “dreams” thing, I guess I can still work on memorizing pi, but what if my dream was to set the world endurance record for jumping rope? Yes, there are things that paralysis cannot affect about us, but to think it cannot affect anything that might “define” us or have anything to do with our dreams is ludicrous. More nonsense that means nothing
“What stands in the way of your dreams? One word: attitude.” Cutesy slogan, more of the same. Refutation: my dream is to be fully healed and rehabilitated in the next hour. This particular quote captures a way of thinking the implications of which are simply inhuman. The following is something I feel very acutely, and this quote is the perfect example to highlight it. What happened to my body is frightful, but no less than what happens to the minds of many disabled people. We have to have some kind of integrity to our views of the world and reality, and the more the better. So when I hear people say things like this, the things above, and many to follow, my perception is that those people are so profoundly psychologically and philosophically defective that they might as well just die. Or let me put that another way. Just as I have been so grievously physically injured that I want to die, I would also rather die than be so psychologically disordered. It’s unthinkable for me. I could never say that a person in my situation was able to do all of the things others can, or that he was not disabled. This is because I regard these things as so absolutely and completely insane that what would have to happen to me in order to say them and believe them would be something on the order of a lobotomy or a traumatic brain injury. That is, in order for me to be able to fit such things into my world view, everything would have to be turned upside down and any coherent sense of reality lost. So my unwillingness to adopt certain “attitudes” or whatever people call them is something like a desperate struggle to evade the clutches of madness. It’s brainwashing. What happens to some of these people’s minds is truly uncanny, and horrifying.
Case in point: a high quadriplegic who cannot move anything below his neck, and needs a ventilator to breathe, says people like him are an “able group that can do as wide range of activities as most people without disabilities”. He’s a fucking head! A head! What the fuck can he “do”? Doesn’t this scare you? The idea of being a high quadriplegic is frightening enough, but imagine yourself also saying things like that! You might as well imagine yourself as a zombie. Is there no boundary on the extent to which a human being can be twisted and hideously misshapen, both inside and out? Even in a godless universe, one must marvel at the frightening extremes to which things can go horribly wrong for beings like us. And this is no different from the Stephen Hawking quote at the beginning of the book, where he says there are “not many” things he cannot do. Not many! Obviously the capacity to be a brilliant physicist has little to do with the ability to adequately comprehend abilities one does not possess, to say the least.
In contrast, let’s look at some things the parents of such a person had to say. Do we see a difference of opinion here?:
“He can’t do anything for himself. We have to do everything for him.”
“We have times where we feel like we’re totally exhausted and we can’t go on.” “Twelve hours of skilled nursing per day.”
“Needs care twenty-four hours per day.”
“Even scratching her head, or her nose, or her eyes; anything she wants to do, you have to do it. It’s like you living and breathing for that person.”
“It’s so relentless. It’s all the time. You can never, ever really get away from it. There’s no time for you, there’s no ‘you’ in a situation like this. It’s only the patient. You have no time for anything.”
“When he wants something but I’m busy . . . it’s like all I hear is ‘Dad. Dad. Dad.’ and that can wear on you.”
And Ramon Sampedro the “head” quadriplegic, called his family “physical and psychological slaves” to his condition.
A woman who was paralyzed from the neck down and seeking assisted suicide in Sweden was asked a few questions. Her responses broke my heart because I felt her pain and admired her honesty. She was asked whether life isn't always better than death. Her response: “I am dead.” When asked about her quality of life, her response was: “What life?” And in 1998 a man named Ramon Sampedro, a head quadriplegic and the same man who was the subject of the movie “The Sea Inside”, read on video the following statement concerning his desire to end his life: “I will renounce the most humiliating form of slavery- to be a living head tied to a dead body.” And yet called “The Sea Inside” a “socially irresponsible film of what can only be called disability defamation”. Whose opinion do we care about more, that of the movie critic, or that of the man who is forced to live as a “living head tied to a dead body”? Does the critic feel no shame writing such things then going home, eating at a well-set table, playing with his children, making love to his wife, and sleeping in a comfortable bed with his arms around her?
Here are a few more common cutesy slogans, just for fun:
“Whether you think you can or you think you can’t, either way you’re right.”
So obviously false that you can think of ten counterexamples by the time I type one. What the disabled enthusiasts often need to realize is that whether they think they can or think they can’t, they can’t. I’m not unaware of the power of positive thinking, but why do people make the things they say so meaningless? If I give a counterexample, they might just say “Well, we didn’t mean that.” Then why say it? And in the case of the disabled, they often mean a great deal more than is warranted.
“We can do anything we want as long as we stick to it enough.” How about the Jitterbug?
“Nobody can make you feel inferior without your permission.”
I especially like this one. It’s famous. Eleanor Roosevelt said it and people like to put it on coffee mugs and things. Holds special appeal for inferior people, don’t you think? Imagine, permission! Nietzsche are you listening? So much for every human virtue then! For certainly none of them have any objective basis- to have anything about you count as a virtue you first need . . . “permission”!
“I don’t know the meaning of the word ‘can’t’.”
I like this one too. Fortunately, I have recently become an expert in “can’t” so I can fill this person in any time she likes. In fact, “can’t” is really the only problem I have in the world. Take away the “can’t” that results from my injury, and I’ll be skipping through the park and making daisy chains in no time.
As you all know, I’ve killed myself. I will talk more about suicide later, but it’s certainly not my view that paraplegics should not live if they want to. Some of them might be fine and think their lives are just dandy and well worth living. Many of them, like me, can more or less take care of themselves, work, and so on. But a line needs to be drawn somewhere, and I have to insist that living as a high quadriplegic is in extraordinarily bad taste. “Compassion”- what suffering it brings into the world? The forces of evil and ruin are hard-pressed to keep up in the race to populate the Earth with miserably ruined human beings once “compassion” starts upping the numbers! Obviously there are plenty of you out there that would rather die than be like me, but honestly, am I wrong in thinking almost everybody would rather die than be a high quadriplegic? Twenty-four hour care. One high quad has pointed out that he has never been alone. What if his ventilator malfunctioned, goodness forbid? So altogether, the entire life of another, able-bodied human being is dedicated to keeping that head alive, along with a tremendous amount of money. Another person fingers them up their asses to get their shit out and sticks catheters in them. No privacy. If it’s a woman, another person has to deal with her menstruation. Bloody pads, tampons. But now some quadriplegic people might get mad about this. Okay then, but before I apologize, please answer a few questions.
What makes you think you deserve so much help from other people? What do you contribute that is so valuable that you have a “right” to have all of these resources devoted to you? True someone like Hawking might produce something others value enough to justify the enormous cost of keeping him alive, but what do you do? The amount of money it costs to keep you breathing is, according to one source, over $130,000 per year. Do you know how many sick or starving able-bodied people’s lives that money could save? So why do you think it’s okay for people to wait on you hand and foot for your entire life while you sit there as a head on a corpse, when the resources expended to do it are so vast? I know a lot of you get into working for disabled people’s “rights”, but isn’t that just more of the same? You get together with some other heads-on-corpses and talk about what demands you are going to make of able-bodied people who are somehow obligated to take care of you, and in so doing assert yourselves in the most unattractive and repugnant ways. I think of something Nietzsche said. Roughly, “Those who make the most noise about their ‘rights’ are those who know they really don’t have any.” Suppose one day everyone said “Okay, we have had enough of feeding, washing, dressing, and grooming you. And we’re also tired digging shit out of your assholes and dealing with your piss. You’re on your own, good luck.” Do you really believe you would have any standing to object? Do those of you who live with your parents really think you are not ruining their lives and those of your other family members? Can you possibly think you are not a “burden”? If you aren’t, I don’t know what is! Can’t you even think what it must be like for a mother to deal with such a thing? The hideous, mutilated remains of her child, living in her house forever. Heavens, let her be done with it! Set her free! She is confused, horrified, and stretched to the limits of her sanity by it. What a nightmarish fate for your poor mom! Please, high quadriplegics. Show some manners and dignity! Die already!
But no, unfortunately most of these people will go on living with their tremendous presumptions of entitlement. You can only go to so many potluck dinners without bringing anything. And even that analogy gives too much to the other side, because at least feeding a normal man allows him not to suffer hunger, and perhaps to go on and do something with his life. Pouring money, and resources, and time into Terry Schaivo was like throwing it in the garbage. There was a person somewhere who needed help but didn’t get it because some brain-dead lady needed to be kept alive as an unconscious, unthinking, unfeeling piece of meat in a bed.
I talk a lot about many disabled people being deluded, psychologically disordered, simply incapable of certain understanding, and so on. But I haven’t yet mentioned something else that is as clear as day and in the end even more upsetting to me. Many of them are simply liars. So I get pissed off when so many disabled people’s transparent, you’re-not-fooling-anybody, emotional needs translate into them coming up with all sorts of deluded, compensatory, bullshit, self-aggrandizing, pride-and-vanity-driven, reeking-of-denial LIES and INSANITY and then want to shove it down my throat. Well I’m not biting motherfuckers! Here’s a lovely quote by Adolf Hitler that will be helpful to bear in mind when considering many of the broadly sweeping and outrageous lies that disabled people tell:
In this they proceeded on the sound principle that the magnitude of a lie always contains a certain factor of credibility . . . since the great masses . . . in view of the primitive simplicity of their minds . . . more easily fall a victim to a big lie than to a little one . . . they will not be able to believe in the possibility of such monstrous effrontery and infamous misrepresentation in others . . . even when enlightened on the subject, they will long doubt and waver. Something of even the most insolent lie will always remain and stick- a fact which all the great lie-virtuosi and lying-clubs in this world know only too well and also make the most treacherous use of.
I can’t stand liars, and the reason is that their bullshit makes things suck for people who want to be authentic and face reality as it is. They know damned well that they can’t do everything everyone else does. Their heads didn’t get damaged in their accidents. And lying isn’t always black and white, but comes in shades as well. I’ll come to what I mean by that in a moment. There is a long tradition in philosophy, dating back thousands of years, of regarding common people as inferior, contemptible, and generally unaware of the noses in front of their faces. As Heraclitus said, “As for the rest of mankind, they are unaware of what they are doing after they wake, just as they forget what they did while asleep.” But though I am not by a long shot one to break with that venerable tradition, I can’t push it quite that far. The disabled that lie about their disabilities know exactly what the fuck they are doing. The philosopher Harry G. Frankfort, in his book “On Bullshit”, distinguishes bullshit from lying by pointing out that the liar at least is cognizant of the truth, and so in some sense mindful and respectful of it, while the bullshit artist is characterized by a complete indifference to the question of truth. He takes bullshit to be more harmful than lying because of this. I like his distinction and think it applies here. Disabled bullshit artists have little concern for whether the things they say about their disabilities are true or can be made sense of. They often say them for praise, or to stroke their own egos, or out of vanity, or to evade reality, or what have you. Let’s look at some examples.
In 2004 the movie “Million Dollar Baby” came out and got the disabled enthusiast community’s panties in a bunch. Basically, a young, healthy, female boxer gets her neck broken and becomes a high quadriplegic (just a head) who is dependent on a ventilator to breathe. She decides she does not want to live in that state and asks her trainer to kill her, which he does quite admirably and courageously after some extremely painful soul-searching. In response, some disabled people made a movie called “Million Dollar Bigot”. They had a pre-existing beef with Clint Eastwood, the director, concerning some wrangling over him not promptly making one of his buildings wheeelchair-accessible. Or something like that. Anyhow, they didn’t like the movie at all, to say the least. So we were on the topic of lies and bullshit. Let’s see what kinds of things they said.
“Million Dollar Baby . . . depends upon the utter ignorance of the movie-going audience to take as plausible this idea that you’re going to commit suicide if you’re someone with quadriplegia.” Liar! That’s John Hockenberry talking, the guy I mentioned above that I can’t stand. Why is he a liar? Because it’s a fact he knows goddamn well that many quadriplegics kill themselves over their conditions. I know of one that had his life support removed just recently. And if he means to object to the idea that a quadriplegic will necessarily kill herself, well the movie certainly never implies that. Let’s hear some more lies from this unsavory man. Critics praised the movie: “Million Dollar Baby is a masterpiece, pure and simple, deep and true.” It also, incidentally, won the academy award for best picture that year. Hockenberry said, “These same critics failed millions of Americans with disabilities by accepting as utterly plausible the plot-twist that a quadriplegic would sputter into medical agony in a matter of months and embrace suicide as her only option in a nation where millions of people with spinal cord injuries lead full, long lives.” Liar! No, it’s not “utterly plausible”: it’s an utter fact. True, with our technology a quadriplegic is unlikely to “sputter into medical agony”, which presumably means to suffer complications out of proportion to likelihood. So he could quibble on the “and” that joins that to the next thing about suicide, which we already know goes on. But that would certainly be a disingenuous evasion. More lies- “millions” of people? If that were true, the incidence of spinal cord injury in America would be right around .67%, calculated using the lowest number that counts as “millions”, and that’s just false. The estimates I’ve seen are somewhere less than one-fourth of that. One estimate from a reputable source puts the number at 250,000, which would mean Hockenberry was inflating the number by 700% at the very least. Not to mention the tremendously broad spectrum of what “spinal cord injury” encompasses. Plenty of them can walk, while the girl in the movie was just a head. What about “full, long lives”? Liar! Actually, I’d call that bullshit, because it shows no regard for truth. First, we’re already over in numbers by 300 to 700 percent. Second, what is his basis for the claim about them leading “full” lives? What standard was applied? “Long” is bullshit too because spinal cord injuries shorten life expectancy, so at the very most this is gratuitous. But as for “full”, did he do a study? Did he send out questionnaires? What are the criteria? Is he alone the judge, or do the opinions of the people themselves matter? What about the ones who sit there miserably hating their lives, living off of social security, and doing next to nothing? The 70% or so who don’t work? The miserable, depressed, degraded ones who are on fifteen types of medication? Get real Hockenberry. You’re canning it and selling it, but nobody is buying. You make me think of that Pink Floyd line, “You’re nearly a laugh but you’re really a cry.”
Another cripple in the movie weighs in, saying it “Perpetuates the myth about disabilities, specifically about quadriplegia being the most horrific thing that can ever happen to you.” That’s not implied by the movie at all, but let’s say it is. What the fuck is more horrific? Remember, it’s “just-a-head” quadriplegia we’re talking about here. It’s not a “myth” in my mind, nor in the minds of any number of others. And don’t even think about saying blindness would be worse. Not a chance in hell. With some imagination one can think of something more horrific I suppose, but being a high quad is worse for sure than, say, having both arms, both legs, and your penis amputated. Notice something else too- the movie takes no position at all on the issue of disability. It’s a story about a girl with quadriplegia who decided to end her life, and a guy who helped her. Period. Such people exist. Such things happen. So why do the disabled get so worked up when a movie is made about a disabled person who wants to die? Something like “truth hurts” is the answer that occurs to me. If you ask me, I think the “disabled community” should also boycott Shakespeare. Didn’t Gloucester, after his eyes were gouged out, ask to be led to a cliff so he could jump? Sounds like “The Bard” had a secret agenda of perpetuating myths about the value of disabled people’s lives! No, it’s all absurd. Dostoyevsky captures it: these people are “as quick to take offense as a hunchback or a dwarf”. What these disabled activists miss is how absolutely ridiculous they make themselves look over things like this. Of course nobody will actually come out and say it, but I will.
Back to the guy above, he then complained that the movie didn’t stay true to the book, which said about the rehab that there were other quadriplegics and paraplegics there, but “most of the patients were cheerful”. Oh, really? What do you think, reader? Is a hospital wing full of people who just learned they would be paralyzed for the rest of their lives a cheerful place? He then says, “If they had [shown the cheerful people], Maggie would have been seen as less than heroic, and much more tragic, because she would have been a real loser.” A “real loser”! Truly, this ugly little man cannot be sufficiently despised. In rehab it’s true that people can smile, and joke, and try to keep their spirits up. It doesn’t take a psychiatrist to speculate as to why they might do this. They are not only terrified and confused, but simply don't comprehend what has happened to them yet. My doctor told me “You’re going to hit a wall.” He was right.
But my doctor was incorrect about something else, because he seemed to think I was taking pleasure in my misery. This may sound almost logically contradictory, but it’s not. And keep in mind that neurosurgeons know things the rest of us don’t. There are all sorts of strange neurological and psychological phenomena they know about and would probably describe in ways that sounded outlandish to us. If you don’t believe it, go out and learn what a commisurotomy does to a person’s mind. Let’s hear from Dostoyevsky again. His underground man says: “The feeling of delight was there just because I was so intensely aware of my own degradation; because I felt myself that I had come up against a blank wall . . . despair too has its moments of intense pleasure, intense delight, especially if you happen to be acutely conscious of the hopelessness of your position.” But my doctor, a fine and generous man though he is, had me all wrong. That’s not my style at all. I hate every single second of this loathsome, detestable shit I’ve been going through. Perhaps the only pleasure I get from it is when I smile to myself at certain moments, thinking how absolutely absurd the idea of living life like this is for me. It’s true. Sometimes I just have to laugh out of pure scorn for this miserable existence.
Speaking of laughing in scorn, I will tell you something personal. There are people out there who laugh at foolishness. They openly deride and others they think are stupid, or who they just don’t like for whatever reason, and they get pleasure from it. My confession is that I have long somewhat envied those people. The reason is that I often feel so frustrated and disappointed with people that I wonder if it wouldn’t offer me some relief from being so patient with them. True, I run my mouth quite a bit in this book, but somewhat like Nietzsche my writings and who I am are two different things. It might surprise you, but his contemporaries said things about him like “I have never met a more genteel man in my life. Never!” I feel that in trying to care for people I took on a great burden because since I would not allow myself any joy in their folly, I suffered from them very much. It seemed ugly to me to enjoy another person’s shortcomings, so I resisted. Greatness of soul revels in what is great, not in what is otherwise, so I tried to embody that ideal. The things I write here have a lot more to do with how I relate to myself than how I relate to other people. At bottom, apart from the few excellent human beings I have known, I find people quite sadly disappointing. I wanted so badly for them to be better and I think maybe that was my own piece of false hope I clung to. I needed them to be something they weren’t, so I put all of my faith and effort and patience into them, trying to take as much responsibility upon myself as I could for their improvement. Why? Because without meaningful and deep relationships with others, the universe was too lonely for me to bear. And without others striving to embody the ideals I loved with all my heart, the world was lonelier and my biggest fear was loneliness. Because again, as Nietzsche said, “For the pious, there is no solitude; this invention was made only by us, the godless.” Without other, similar beings to live among, I was in my innermost feelings fated to be completely alone but for the company of the philosophers.
The issue of whether I’m depressed has come up quite a bit. It seems sort of the default for doctors and others to take that since I am so unhappy, depression is the problem. But this provides little information, and is almost a tautology in my opinion. No, the problem is that I’m crippled. There were brief periods where I felt depressed, but I don’t feel that way anymore. I am not depressed, I am tortured, and there is a difference. I’ll say plenty more about it below. Everyone knows that I was a healthy and happy man before I got hurt. Everyone knows that paraplegia is my problem, but since nobody can do anything about it, they go for the second-rate answer of just saying I’m depressed. I’m not happy, so there must be something wrong with me, and it’s depression, which can be “fixed” with drugs, therapy, or whatever. Imagine a man being chained to a wall in a dark dungeon and told that he was to be there for the rest of his life. He’s looking kind of down, so a doctor is called in who pokes and prods him, asks questions, and finally comes up with the diagnosis. “He’s depressed.” No, his problem is that he is doomed to be chained to a wall for the rest of his life! Interestingly too, if they came up with the cure today and I got better instantly, I could win myself a Nobel Prize in medicine for proving that depression was caused not by anything in the brain is previously thought, but by damage to a few cubic centimeters of nervous tissue in the spinal cord. Because I guarantee I’d pop up and be feeling as merry as a lark in about one second. Of course that is a joke and logically flawed, but you see the point. My problem is not depression.
Some who suffer spinal cord injuries soon get better. They experience swelling, or something else, that puts pressure on their spinal cords, and then in one way or another the problem is solved. Then they say the most shameless things to flatter themselves. “I was determined to walk again.” That is, they think it was their own personal strength or determination that made them get better. The problem with this is that when these sorts of things are publicized, many get the idea that all that is needed for us to get better is hard work and unflagging willpower. You might think I’m joking, but I’ve heard of paraplegics who have been told the only reason they are still in their chairs is that they are lazy and just don’t want to bother trying. No, though it may seem so incautious, I’ll go so far as to say that nobody in the history of the world has ever suffered the same injury as me and gotten better. Because it doesn’t happen. Just like no amputee has ever grown a new leg. Smeared spinal cords do not heal. So those people who have brushes with spinal cord injury and get better are simply lucky. That is not to say categorically that hard work does not allow people to show improvement. But nobody, anywhere, has ever walked again after sustaining an injury like mine. Rick Hansen rolled his chair around the world in what was almost undoubtedly a far more brutally grueling feat of will and determination than you have ever pulled off, dear reader. But maybe Rick should stop being so lazy and do the work needed to get himself better! Just a little willpower and he will be walking around in no time.
These kind of things are hard for the disabled to hear because they set up impossible standards which then allow others to view them in an unfavorable light when they are “unable” to live up to them. “I just read in the paper about a guy who had a spinal cord injury and walked out two weeks later. The doctors said he was very determined. I never knew Clayton was so weak, but I guess that’s why he’s still in that chair.” And the same is true for the things said by the liars and bullshit artists. I’ll tell you what I mean. Here I will introduce probably the most important and common fallacy committed by the disabled when they attempt to delineate the spheres in which they are still able. It’s a big, fat one and is what allows them to say things like “I can do the same things as everyone else.” I tried to come up with a name to capture and make it stand out and thought of a few: “Fudging Essences”, “Ignoring Properties”, “Stretching Concepts”. But really it is a well-known fallacy and has a well-known name: conflation.
“‘When I use a word,’ Humpty Dumpty said, in a rather scornful tone, ‘it means just what I choose it to mean, neither more nor less.’”
Conflation. To start, I’ll just define conflation as the treatment of two distinct concepts as if they were one. Able-bodied sex and paraplegic sex, for instance. To develop this idea and make clear what I’ll be getting at, let me say a few other things first. Notice first that almost all of the things around us have innumerable properties. Take the book in front of me, “An Introduction to Haiku”. It’s off-white with purple and black ink on it. It has a definite rest mass, dimensions, and average density. It’s flexible. Under the right conditions it’s flammable. It’s a certain distance above sea level and from the topmost point of the Great Pyramid of Giza. It has “I” as the first letter on page 143, a small crease in a precise place on the cover, and so on. I could work on the list all day, every day, for thirty years and never finish. Some might plausibly say that its properties are infinite in number. Next, notice that two things will be either the same or different with reference to these properties. My copy of “Zettel” is the same as one of my highlighters in that it is pink, but different in that it’s made of paper and the highlighter is not. This, together with the infinite or almost infinite number of properties thing have, creates a situation my professor described where if you have two objects, A and B, that you think are the same, I can introduce a third, random object, C, and for every similarity you can name between A and B, I can name one between A and C and thereby form a basis for refusing to admit that A and B are more similar than A and C. “You won’t like some of them”, he said of the similarities, but nonetheless he could do it.
Next, consider the ideas of essence and accident. The general line is that essential properties make things what they really are and accidental properties are just the fluff. I don’t like this distinction much though I’ll admit it is a pretty thorny and puzzling philosophical problem and I have no clear and brief answer to it. My view tends toward thinking that some properties are essential and others accidental depending mainly on what kind of interest we have in the thing in question, or what about it we are choosing to emphasize. Or again, properties of things are interesting or informative only depending on our own particular desires and preferences, and often when we try to come up with accounts of the essences of things we do not end up saying anything particularly enlightening or interesting, though this is not always the case. So the distinction is certainly useful but rarely does the kind of work people want it to do. The classic example that every philosophy student knows is Aristotle’s questionably serious definition of man as a “featherless biped”. Dostoyevsky prefers “ungrateful biped”, but either way the point is that there are still a great many interesting things about humans outside of being bipedal and featherless, or ungrateful, as the case may be. The same professor I just mentioned suggested that the human genome was a plausible candidate for being the essence of a human being. No doubt it’s a fascinating idea, and very important, but also in many ways limited in its relevance to our everyday lives. To keep it simple, yet still more or less accurate, I’ll say that what’s essential about a thing is indispensable to its being what it is, and what’s accidental is dispensable.
Let me give an example. Suppose a little child has a neurosurgeon for a father and wants to do what his father does, so he knocks on someone’s head and looks in their ear. “Hello?” And indeed, the father makes inquiries into the states of affairs in people’s heads. So when the child says “I can do what daddy does!” we say something like “You sure can little buddy!” This will be our model of what it looks like when disabled people commit the fallacy of conflation concerning many of their abilities. The general form of objections to conflation will start with “The distinction you are failing to draw is . . .” and before everyone gets bees in their bonnets (though I’m sure by now it’s a little late to say that) the example is intended to be somewhat mocking and no I’m not, for the hundredth time, saying that disabled people can’t do a great many things. I am saying, however, that quite frequently the claims that the disabled make are equally as absurd as the example above.
I’ll be clear on how the example fits in with what I’ve said. What the neurosurgeon does is very complex. His job has many ‘properties’. But what the child does is to point out one highly general and uninformative thing the father does and to treat it as the essence of what it is to be a neurosurgeon. This is how the child can then claim to “do what daddy does” and at once be entirely correct and at the same time entirely wrong. And so this is often precisely what goes on when the disabled claim they can “still do” things. No, it is permissible and necessary to stress some things and de-emphasize others when making comparisons, but we can’t do so willy-nilly and in a manner that is completely arbitrary. My feeling about all of this conflation is best summed up by something Charles Eames said:
The details are not the details. They make the design.
It’s funny that I call this the most important and “big, fat” of disabled fallacies but when it comes time to give examples I stall a bit. Why? Because they are everywhere. They are ubiquitous in the things the disabled say about what they can do. Almost every single aspect of my life is different in some significant way. And when I say “different” I mean “worse”. So trying to think of examples is something like if we were standing in the densest jungle on Earth and you said “I’m having trouble with the idea of ‘plant’. Would you point one out to me please?” Let me give you the tool you need for proper understanding. It’s the “Disabled Ability Translator” and we will use mountain biking as the example. When a paraplegic says “I can go mountain biking.” the proper translation is “I can go cripple mountain biking.” Then if you really want to understand the difference, you will compare the two. So with this example, one difference is that no paraplegic mountain biker could have come anywhere even remotely close to being able to keep up with me on any mountain biking trip I ever made in my entire life, even the very short ones. Never, not a chance, forget it, absolutely not, no way. And most of the time the terrain would simply have been off limits for them. Of course there are stubborn ones that want to “prove” something and with great trouble laboriously drag their half-dead bodies to places that are extraordinarily hard for them to get to, but when we apply the translator we see that they haven’t proved what they set out to at all. As if one could watch a bird fly over an icy, stark, jagged, 20,000 foot mountain, spend the next two weeks inching over the mountain with great difficulty, and then, when on the other side, say “I can do what the bird can do.” Conflation. So imagine it’s a fine, sunny, beautiful day. Time to get up and get ready! Well, I mean time to cripple get up and get ready, because:
There’s able-bodied getting out of bed where you spring up like a Jack-in-the-box, and then there’s cripple getting out of bed where you are two arms and a head cumbrously dragging your living corpse into a wheelchair.
There’s able-bodied morning pee which is quick and relieving, and then there’s cripple morning pee where you set up a miniature operating room, slide a tube down your dick, and feel no relief or gratification whatsoever.
There’s able-bodied morning poop which is quick and relieving, and then there’s cripple morning poop where you protractedly finger yourself up the ass, touch poop, and feel no relief or gratification whatsoever.
There’s able-bodied showering where you step in quickly, have the pleasurable sensation of warm water all over your body and wash yourself quickly and with great facility, and then there’s cripple showering where you drag your carcass onto your shower bench, waste a lot of time if you want to do as good of a job washing, enjoy less pleasure, and so on.
There’s able-bodied dressing where you do it quickly and easily, pants on in one second, and then there’s cripple dressing where it’s awkward, you waste time, and you flop around like a fish on land trying to pull pants onto your living corpse.
And as a paraplegic I can still go to the beach of course but again there’s going to the beach and there’s cripple going to the beach. Because what going to the beach means to me is:
Climbing and diving off of cliffs, over and over.
Running, or doing sprints with my best friend.
Wrestling in the sand or doing pushups and yoga.
Walking hand-in-hand with my girl or with my arm around her.
Throwing the shot-put and chopping wood for the bonfire.
Jumping up on top of a bonfire made of pallets and yelling, whoop!
Bringing a shovel and digging a huge moat with a giant pile of sand in the middle so the children can have fun and make a sand castle with me.
Carrying coolers, tables, food, firewood, barbecues, chairs, and all sorts of other things out onto the sand to set up.
Picking girls up on my shoulders and charging into the water with them.
Playing in the big surf, jumping and diving through the waves.
Jumping up and doing pullups on the pier as my little cousins hang from my legs.
Running, jumping, joyful, expressive, exhilarating exuberance!
“I enjoyed my own nature to the fullest, and we all know that there lies happiness, although to soothe one another mutually we occasionally pretend to condemn such joys as selfishness.” –Camus
Trying to be systematic in writing this book is difficult for me in part because the subject is so broad and touches such a seemingly inexhaustible number of aspects of my life. Also, I’m wanting to die pretty soon and don’t have weeks to sit and get it done. So I’m going to let it get choppy here and there and some other chapters will probably end in the same way. Make what you will of it.
Rick Hansen said, “Every time we reach an obstacle we believe with all our heart that somehow there’s a way over it, under it, around it, or through it. Somehow there’s a way, you just have to find the key.” I really like Rick Hansen. Of all the things any paraplegic has done I liked his tour around the world the best. But I have to disagree with him. Some obstacles are simply impossible to get around and there is nothing we can do about them. I can’t, for instance, live a life that is acceptable to me. But Rick I admire you and think what you did was awesome. You said this: “Be the best you can be with what you have. I think that’s all we can ask of anyone in life.” You are absolutely right and you have done great things.
Rick Hansen also said, “Are you going to have your success be determined by somebody else, by society, or by your own personal desires, strengths, values, principles?” Yes, I will have my success determined by my own values and principles. I will succeed in ending my life because that’s the conclusion I am compelled to.
One of the consequences of conflation is that when I lament something lost in my life, other disabled people want to tell me it’s not lost. I can say something like “I can’t have sex anymore.” Then instead of sympathizing with my pain, they pretend like they don’t know what I’m talking about. No sympathy, because it threatens their security. If your child was lying dead on the ground in front of you and you cried out “My baby is gone!” they would say “What do you mean? He’s right there in front of you.” As my friend who coined the term said, “The vile thing about the youcanstillers is that they don’t let you mourn.”
The nice thing about conflation is that when you are able to choose whatever aspects of a thing to emphasize with no restrictions, all of a sudden you can do anything. “Why does everyone thinks Shakespeare is so great? He just moved a pen around on some paper a whole lot. I can do that.” So really, the disabled are even more able than anyone else because they can do anything any other person in the world can do. Einstein wrote some numbers on paper. I can do that. Mozart wrote some notes on paper. Leonardo da Vinci drew some pictures. Every member of the disabled community can do these things.
I said something somewhere about shades of lying. What I mean is that lying isn’t always just a matter of true and false and this goes along with the last comment. If I say I can do everything Mozart could and restrict my analysis of what he could do to writing some notes on paper, then I am not a liar. This is the most significant sense in which so many disabled people are liars. This is the paradox so many disabled enthusiasts play off of: one can be a colossal liar and never say a single false thing. Is an aircraft carrier the same thing as an avocado? Yes it is- they are both made out of matter. That is the core of conflation. ANY two things are the same in some way. No matter what they are. This is what enables the disabled to say, for any “A” and “B”, “A is B.”
Exercise is something else people tell me I can do, but my heart and lungs were made to run a whole body, not two arms and a head. I have a Lamborghini engine inside of me with a governor that limits it to forty miles per hour. I can never work my cardiovascular system to its highest potential again, not even close. You disagree? Just think of it in terms of power output. A paraplegic can only put out a small fraction of the power a healthy, able-bodied person can. If you can’t see this immediately just think of the simple idea of increasing potential energy. Running up a steep hill would be an example. No paraplegic alive could get anywhere remotely close to putting out the kind of power I could with my healthy body. I’d say at most, using the example of going up hills, they could put out about 20% of what I could. What I mean is that whatever time it would have taken me, for example, to raise my body 200 feet by running up a steep hill, it would take a paraplegic five times as long. That’s just a guess and in truth it’s probably generous to the paraplegic because a healthy man can fly up a steep hill.
Ere long that peculiar gasping of the lungs was heard which denotes the fullest tension of life’s utmost energies. –Melville
All of this this just means I can never again work my heart and lungs the way I once could. Never again can my body truly have the feeling of powerful physical exertion. Never do sprints or run hills. Never truly feel my oats.
All the soarings of my mind begin in my blood. –Rilke
Never trust a thought that didn’t come by walking. –Nietzsche
Ideas come from the muscles. –Edison
Yes, in the end maybe it’s my values that are different. But many of my values are the same ones that basically any human being holds. What’s remarkable is how stubbornly people fight to avoid admitting what they believe with every ounce of their beings.
I want to go out and party and have fun. “You can go out, you just choose not to.” No, I can cripple go out. Apples and oranges. A head quadriplegic bowler with a large and complex ramp-apparatus on the front of his chair. He points the thing with the chair that he drives with a mouth stick and then somehow actuates the ball to roll down the ramp to the pins. Can he still bowl?
One paraplegic emphasized my inability to walk as if it was all I had lost and said, essentially, “So you can’t walk. What, were you going to run marathons for a living? Just what is it you can’t do that’s so indispensable to a happy life?” Suppose I then saw this person the next day and she had just lost both of her arms at the shoulders. If I were a different person, I might say, “So you can’t do pull-ups . . .”
The lies of the lying disabled create impossible standards for those who want to be honest and deal with the reality of their disabilities. “I hate all those that say you can live fully with a spinal cord injury.” A person with a spinal cord injury said that. And many more would agree because those are the kinds of people that make the world think paraplegia is acceptable. Maybe acceptable in the sense La Rochefoucauld had in mind: “We never lack the strength to endure our neighbors’ misfortunes.” I’ve heard people say that spinal cord injury is not a priority for medical research like cancer because “people can live like that”. No, we can’t live like this. This is not “life”.
“The demand that the people should shake itself free of illusion as to its own condition is the demand that it should abandon a condition which needs illusion.” -Karl Marx Unfortunately, the condition cannot be abandoned, therefore . . .
Some guy, I think he was a head quadriplegic, wanted to be assisted in committing suicide. The crazies got angry and were “outraged that our state for years left Larry McAfee without enough support for independent living and now steps in willingly to help with his suicide . . . the state creates an unbearable quality of life and then steps in and says disabled people should be assisted to die because their quality of life is so poor.” Oh, did the state make his quality of life so poor? The assumption I suppose is that a head on a corpse can have a perfectly acceptable quality of life if only everyone will scramble to take care of him. And again, why is it the responsibility of the state to devote enormous resources to keep heads alive? Someone has to take care of them and it’s your tax money that pays for it. What is money, really? It’s just the distilled essence of other people’s work. When you have money, you get what other people have. So when the disabled demand money and care that they cannot work enough to offset, what they are saying is “You are under an obligation to give me what I demand, end of story.” I used to think only royalty was ‘entitled’ to such things.
Let them eat cake. How does it make you feel when someone that has everything you want and have been deprived of tells you that you should learn to be content with your life as it is? That you should accept inferior goods and learn to like it? Though it is well-meant, in a way it feels like an insult when people try to encourage me to live. You’re suggesting I should go through life as a cripple? You have mistaken me for someone who is willing to settle for an inferior life!
When the disabled say they can still do “everything” they perhaps feel pride and want others to recognize them as equals and respect them, but what they are really doing is humiliating and embarrassing themselves because nobody believes them and everyone just ends up humoring them like one humors a small child. Get real cripples! If you are honest about what you can do, you can still do impressive things and get respect. But when you openly compare yourselves to able-bodied people in terms of physical competence, you have lost your mind and then present only pitiable and ridiculous spectacles to all around you.
Many disabled sustain themselves with false beliefs that are not open to testing or refutation. They twist and turn and do everything possible to avoid any possibility of their claims being subject to falsifiability. Math describes the world so well because it is infinitely adaptable. Infinitely. If a function does not work, you make a new one. If the whole thing is not smooth enough, you chop it up once, twice, a million times until it is. It’s the same with the lies of the disabled. If you catch them on this, they will change it to that. If it’s not the same in this way, it’s the same in that way and somehow, some way, they end up being exactly the same as everyone else.
Independence. People constantly have to go out of their way to accommodate me. Walk this way rather than that. Stand and wait while I do something. Help me with this or the other thing. To go out and do things with me is to share my prison cell.
A paraplegic yoga practitioner. Says that he is aware of the subtler connections between mind and body. Of course he is! “I have to go inward and listen. My paralyzed body didn’t stop talking to my mind.” He talks about the “hum” of his paralyzed body, what he calls “energetic awareness”. “I’m getting a glimpse into a level of existence that we have a hard time hearing.” Before he felt like a “floating upper torso” but now “I’m talking with you with my whole being.” Notice that all of this stuff is not subject to any kind of verification. We are tempted to believe something really profound is being said here, but really there is no indication that it is based on anything concrete. If I concentrate and try to “sense” my legs I experience something that feels like I am aware of them. I can experience something that is like a “hum”. But the question is of what causes that. My brain still has the capacity to experience my legs in the sense that if my spinal cord magically healed, I could feel my legs. So that seems to have something to do with my being able to imagine the feeling of knowing where my legs are, though it is only a shadow of the real feeling. But the question is of whether the cause is above or below my injury. The yoga man says he can achieve “integration” but so far he has given us no reason to believe he is experiencing anything but his own imagination.
The “Get a Job” fallacy. Happens when the giver of advice tells you what to do but not how to do it. “Do things you find satisfying.” The classic example is telling a homeless man to stop smoking crack, get a lucrative job, a car, a wife, and a family. Any “advice” the giver seems to think is wonderfully helpful and tells me something I don’t know. “You just need to find ways to be happy.” Often makes the erroneous assumptions about what is even possible.
The “Point-No-Point” fallacy. Goes along with conflation. Happens when one makes a point of telling me things I can have or do but ignores that those things are no longer the same. “You can have a wife. You can have a family.” What does “have” mean? Hiking, socializing, exercising, travel, etc.
One of the tragedies of humanity. It happens all the time that even when we try our hardest to help and encourage others that we just make them feel isolated, degraded, hopeless, and alienated. We cheerfully show them how impossibly far away we are from understanding or sympathizing with them with our most well-intentioned advice and remarks. “You can still go to the beach! The beach is still fun!” Thinking about the beach makes me die inside.
Nietzsche talked about how many ideas are attractive, notably religious ones, because they “invert the order of rank” that exists among people. This is what is going on when disabled people claim to have some sort of grasp of the “important” things in life, that others don’t. Their relationships are better and more meaningful. Their perspectives and insights are deeper and broader. And so on, and so on.
I’m amazed at how often we simply will resist certain conclusions despite overwhelming evidence that related truths are all around us. Like how hesitant so many are to say that someone is a “bad person” when we see horrific things happening all over the world, every day, by the thousands. Why is it so surprising to think that disabled often need to think things that are false or exaggerated in order to maintain positive attitudes? Is denial a new concept to you? Mindful of the horrible atrocities that occur every second, is it so hard to believe that being turned into two-arms-and-a-head attached to a corpse could lead someone to become a little psychologically skewed? Right now someone is chopping someone else up with a machete and a disabled person is telling a lie about his disability. Why so easy to believe the former and not the latter? “People are constantly torturing each other in the most extravagantly imaginative ways, that is true. But that the disabled community as a whole is in the habit of turning the truth on its head, that we simply cannot believe”
“All human beings have bodies that define their existence and which can veto the best-said plans of the mind and soul.” That’s Hockenberry. He would call my feelings about my condition “self-loathing”. We can apply our formula about conflation to his first quote there: The distinction you’re failing to draw is . . .
“Disability is part of life. We all become disabled eventually.” The distinction you’re failing to draw is . . .
“Everybody has their wheelchair. The only difference is that you can see mine.” When someone else is better than us in some way, our minds quickly start groping around in an effort to find something wrong with them so we can see ourselves as their equal, or more commonly, as their superior. He’s book smart, but I’m street smart. He’s rich, but I can kick his ass. I’ve got my wheelchair, but so do you. So does everybody. There, now he feels better.
Here’s Hockenberry embarrassing himself again: “We worship sensation, longing to make its impressions real . . . to honor sensation is to honor an illusion.” Of course his view on this point has nothing to do with his paraplegia. He’s such an objective journalist-type guy that he would never allow for that. But I really think he should get a sandwich board for his wheelchair and advertise his philosophy on the street. I’m sure there would be a rash of cancelled massage appointments across the country and guys all over would start refusing blowjobs from their girlfriends so not to be taken in by the illusion of sensation. Let’s see how many converts you can win with that one John.
I’m partial to those who say, “I couldn’t possibly imagine what it must be like.” These people are correct, and as Socrates taught us, to realize that one does not know is better than to think one knows and yet be wrong. But still, most people I talk to have solutions ready in a flash and do not hesitate to share them. You should see how pleased they can be with themselves when they give their advice. They just tickle themselves pink.
They say I have a shallow and incomplete conception of love and life. That my relationship to existence lacks richness, depth, and spirituality. But in saying this, they don’t realize that they have set themselves up to be embarrassed when I play the trump card of all philosophical refutations: I know you are but what am I?
Another paraplegic wrote this to me “I almost puked yesterday reading something that said ‘disabled people don't mind their disabilities, only the way they're treated’. I read it 10 times, closer to barfing each time. ‘People can't respect us if they think we need a cure.’ Some crappy activist said it.” My thought was to wonder if society also made those disabled people lack echo-location.
Imagine a person who is constantly told they can do what is impossible. They are reinforced when they play along and confidently agree, but looked down upon and thought of as lacking spirit or will or strength when they don’t. What will happen to that person? Can one imagine a more desperate, alienating experience of life? Maybe something like the experience of a person who realizes God doesn’t exist but stands to lose every person in her life if she is honest about it.
When people read this I feel convinced that many will think “Clayton is imagining things. Nobody really says all of the things he seems so worked-up about. Everyone knows being a paraplegic involves difficulties. Has he gone crazy?” I really can’t help smiling at that my friends. That I may be dismissed as a madman is one of those thoughts that frustrated me for a long time but now that I’m getting closer to death it really makes me laugh. But maybe what will make me laugh in the end is just how foolish I have been. Maybe I will be wonderfully amused when I stick the knife in my stomach. I will think to myself “Yes Clayton you thought you could get other human beings to open their eyes. That was a good one.”
People are strange when you’re a stranger.
Being around people is now very strange for me in many ways. Many people are wonderful to me but others are not and often it’s precisely how “nice” others are that is the worst and most insulting thing of all. I’ll just point out a few of these sorts of things.
One is the “I’m sorry for existing” phenomenon and it’s precisely that. People apologize for existing near me. They will walk by me and very frequently say “sorry” in the sense of “excuse me” at completely inappropriate times. I mean they can pass five feet away from me and say it when there is no chance at all of them obstructing me in even the slightest way. I’m not sure what this is. Do they feel guilty for being able-bodied around me? I have very few memories of dealing with disabled people before I was injured but one might give me an insight here. In the summer I would jog with my shirt off to get some sun on my body while I was out. But I won’t lie- I wanted to show off too. I was proud of my body and thought the upright posture I held while running accentuated it. Once however I found I was running toward a person in a wheelchair and the feeling I had was that I should try to shrink and become smaller. That is, I felt like my proud posture, standing tall with my chest out and shoulders back, would put them to shame. That it would remind them of their unfortunate states and it was therefore proper for me not to be quite so proud in front of them. I think that is perhaps similar to what stands behind the “I’m sorry for existing” thing. People feel so much pity for me they just don’t know what else to do around me but apologize. That or something like it is the best I can come up with.
Here is a pattern I observe often when approaching people on the sidewalk. Something like: See me. Alarm. He’s looking at me. Quickly look one way, then the other, as if frantically searching for an escape route. Become self-conscious and realize they are giving outward signs of this. Try to get under control. Stiffen. Bring head erect and fix eyes on a point far ahead. Uncomfortable. Walk loses freedom and fluidity, becomes tense, rigid. Is he still looking at me? Stay calm. Don’t look at him! Try not to flinch when passing. Walk on by. Relief. Breathe.
At law school orientation I overheard a girl mention something quite remarkable that we had in common so I went and tried to talk to her about it. I won’t say what the thing was, but my face was basically that of the person who says, “Oh my gosh, you are fluent in Nymylan? Me too!” In response she got very uncomfortable, mumbled something I don’t remember, and walked away from me. And every time I saw her for the next year she tried her hardest not to look at me. Once she gave me a brief, grudging smile in a situation where it wasn’t going to be easy to pretend I didn’t exist. But just the other day I saw her and finally tried again and this time she smiled a little, though she was still edging away at the same time and trying to make it as short as possible. She used a little trick people have with me. You know the little tricks people have, like avoiding intense eye contact by positioning the rim of their glasses directly between their pupil and you? This is an interesting one and it’s hard to describe the situation perfectly because it’s pretty subtle. I can’t really turn my body much without turning my chair so if I’m sitting at a table or desk and my arms are up on it to keep me from falling on my face, I just turn my head to follow the person I’m talking to or looking at. So when people are uncomfortable with me or don’t want to talk to me, they move, as I follow them with my eyes, right to the point where I have to crank my neck over as far as it will go and then they kind of hover there, just barely in my field of vision. It says something like “I want out of here and it should be clear from what I’m doing so if you want to push the issue I’m going to make you turn all the way around and face me fully which will make things awkward and you know it so why don’t you just do what I’m telling you to do by making you crank your neck over like that: say goodbye and turn your face away from me so I can get away from you.” I know it sounds pretty wild, but people communicate complex things like that to each other all the time with their behavior. So be skeptical if you like, but don’t be too sure of yourself.
I don’t get angry or resentful toward these people, but it makes me very sad. This is the case in general. In only a handful of cases since my since my accident have I gotten upset with someone for how they have treated me, when it had to do with my disability. A great many things about how people treat me hurts badly and makes me very sad but I do not blame them for it. The general public is so unbelievably far from having even the slightest conception of my situation that my being angry at them would be far more contemptible than almost anything they could do. One of the things that hurts the most though is when people just want me not to exist or react toward me with revulsion or repugnance. I guess what I’d say to them is just that people like me are simply part of reality. We exist. Horrors exist, and though you may get lucky and not have such a monstrous fate as I do, in the end destruction is coming to all of us and if you can’t countenance beings such as myself, you may not be adequately prepared for the “heart-ache and the thousand natural shocks that flesh is heir to”. So maybe you should try to stop averting your eyes. It would make my existence just a little more bearable, and might do something for you as well.
One thing that is especially unpleasant is when people make assisting me into a sweeping and ostentatious gesture designed to make a big show out of how wonderfully polite and helpful they are being toward me. You can imagine it being done, for instance, in opening a door. I generally think it’s in good taste not to make a big show of doing things for others because it offends their dignity. If I give money to a hungry guy the last thing I think of doing is to give him some big, cloying, condescending smile. That kind of behavior is extremely distasteful to me yet I’m on the receiving end of it constantly. And smiles can be something just in themselves. Another disabled man described certain smiles as those “usually reserved for puppies and infants”. He captured it with perfection. It’s very distinct and I see it all the time, almost always from women. You can probably tell by now how I feel about that one. I want to be a strapping buck, not a bird with a broken wing.
Some disabled like to point out that it’s how you act towards others that determines how you are treated so if I have to deal with unpleasant things from other people it has mostly to do with how I present myself. Notice also that this is impossible to refute. This is a point on which knowledge is shaky unless you know the person in question pretty well, but there are also times I know it’s not me. I think of a time when I was rolling down the sidewalk and thought of something funny. At that moment a big happy smile came across my face and a girl happened to be coming my way. I was excited that I had a big, happy, genuine smile to show her and so I said hi. She just got uncomfortable and looked away. Again, who knows maybe her dog died earlier that day. But that sort of thing happens to me all the time now. Far more than ever before.
I’ve called this chapter “The Stranger” but in fact it’s often that people get too close, too quickly for me. They feel free to speak and act toward me in a manner so familiar it belies that they view me as something far less than a man. Cute nicknames, touching me on the head, that sort of thing. In general I think I am viewed as weak, damaged, vulnerable, pitiable. I’m not saying these things are not true, I’m just saying that it’s not a pleasant thing to be constantly reminded of it by the way people interact with me. Yes, sixty-year-old obese lady in dirty sweatpants, I know I’m in a wheelchair but you don’t have to look at me like my dog just died. My life sucks enough already, thank you! And of course there are other little perks. Women pulling their children and baby carriages away from me, and so on.
Another random observation is that others sometimes afford me little “honors” like when we let a child put the star on the tree or make the first cut in the turkey. In such cases, the actions of those involved would make absolutely no sense if I were my old able-bodied self. Something like if twenty people were playing “truth or dare” and I was picked ten times in a row. I might laugh and say “What, are you guys trying to weird me out or something?” I won’t give examples because I don’t want anyone to realize they were involved and feel badly about it.
Something that does not bother me at all is when people ask me questions. Even when they ask me awkward ones it’s better than acting like I don’t exist. “Have you ever thought about killing yourself?” or “How do you use the bathroom?” are better than people doing everything they can not to look at me. It was always hard for me to maintain a feeling of harmony with my surroundings. Society is so confining in so many ways. Now I feel like a creature that is out of place not only in this bizarre, artificial, and often alarming world we have created, but even among his fellow human beings.
Green grow the rashes, O
Green grow the rashes, O
The sweetest hours that e’er I spend
Are spent amang the lasses, O
Let’s not kid ourselves on this particular topic. Two-arms-and-a-head can’t have sex. Doctors and other well-intentioned people assure me I can but that it will “just be different”. I say, “Go home.” In a movie a newly paralyzed man asked his doctor if he could still have sex and the doctor replied, “The short answer is ‘Yes.’” Wrong. The short answer is “No.” True, the unfeeling penis attached to the living corpse I drag around can become erect but what has that to do with me? It’s not a part of me- it’s part of the thing. But sexuality is just another of those areas where the bullshit is too deep to ford at any point. So let’s talk about paraplegic “sex”. Generally the whole joyful experience of being active and physical with a woman is seriously compromised, where it is not completely ruined, by my immobility. Running in the park, wrestling, playing, romping around, and all those types of sweet joyful things are gone. And in the bedroom too a great deal of what was there is either gone or might as well be.
With apologies to all of the Andrea Dworkin fans out there, I thought pretty highly of my penis. It was a source of pride and wonderful pleasure for me. As should be clear by now however, I don’t have a penis anymore. But what about the act of sex itself? Since I was injured I had “sex” once, with a woman I dated before. So she got on top which was more or less the only position available and had a go at it. The experience was bizarre to say the least. It looked like other times I’d had sex with her, but I couldn’t feel it at all. Unless I watched, I could not even tell if my penis was in her or not. Does this register? A situation equivalent to my having sex with a woman would be if I were to hug and kiss her while she pleasured herself with a dildo. Still fun and sweet maybe, but let’s call it what it is please. In truth, watching a woman bob up and down on the penis attached to the corpse that used to be my body struck me as macabre and disturbing. It was like necrophilia. It’s like watching a woman get off by rubbing my amputated foot on herself.
And what about sex with a female paraplegic? The male in that situation might just as well be having sex with a warm ham. What I mean is that he can interact just the same with her upper half whether he’s got his dick in the ham or inside of her. Unless they were trying to conceive a child it would make no practical difference to her, just as she would not know, unless she watched, if he was having anal or vaginal sex with her, or if his penis was in her at all. He could just be bucking up against her and it would be the same to her. But here come the objections from the cripple gallery. Sex isn’t just about intercourse. Now I can concentrate on what is really important about love. I just have a shallow appreciation of intimacy with a woman. What I can do is still “sex” just as much as anything else. Those cripples should really sell their advice because there must be a market somewhere. Yes, one can have a nice time with another human being without having sex, but sex is what we are talking about here. And of course I can still lick some good old pussy. There’s nothing wrong with that but forgive me for saying that taking on the role of designated pussy-licker for the rest of my life takes some of the thrill out of things. No offense girls but surely you can understand. Many paraplegic women feel the same about sucking dick, by the way. Suck some dick or let him fuck your corpse. Those are the options. One paraplegic girl I know told me she has no interest in sex because of how disturbing the idea of a man having intercourse with the lifeless lower half of her body was. Her feeling, she said, was “Don’t touch that!”
Has everyone heard of Jack Handey’s “Deep Thoughts”? The joke is that it’s a stupid guy trying to say deep things, like “I’d rather be rich than stupid.” The following one basically sums up my feelings about paraplegic sex: “To me, boxing is like a ballet, except there's no music, no choreography, and the dancers hit each other.” The joke is of course that the two things are not alike at all. So to me, paraplegic sex is like normal sex, except you can hardly move, you can’t feel it, and your genitals are irrelevant. Think of it this way- can you imagine a male paraplegic and a female paraplegic trying to have intercourse for any reason at all? Why in the world would they, unless they were twisted in the head and trying to prove something that could not be proven? And have you any idea how impossibly awkward and ridiculous it would be?
Groucho Marx said, “I don’t care to belong to a club that accepts people like me as members.” There are many people out there with perverse tastes and desires and a group of them is called wheelchair/disabled “devotees”. They have websites. They say things like “Look at those sexy, floppy, lifeless legs!” I’m not making this up. Think of anything troubling in the world, and there is someone who gravitates toward it. Some might find it appealing that I’m so physically helpless. They might find security in being with a man whose body is broken or enjoy being more powerful in various ways than me. Maybe they could have a taste for the tragic and macabre. Who knows the exact reasons behind it? Do they sadistically derive pleasure from the degradation of their partners? Do they masochistically derive pleasure from debasing themselves? Do they lack self-esteem and need to be with “safe” partners who won’t leave them, finding security in being with a person of lower “dating value”? Or maybe wheelchair/disabled devotees are on the whole perfectly normal, psychologically healthy and wholesome people who just happen to find themselves sexually attracted to severely disabled people. Just kidding on that last one. Have you all heard the following sick joke? Question: What do you get when you stab a baby in the stomach with a butcher knife? Answer: An erection! That is how I feel about these “devotees”, but in their case the question is: What do you get when you see a human being with a horrible, ghastly, devastatingly disabling injury? The answer is the same, it seems.
Here’s something else to think about. In what sense do I now have a gender? Am I a male? Why? Because I’m hairy? Low voice? Beard? Brain? I’ll admit that the testicles on my corpse still work and put testosterone in my system. So? I watched a disabled man get interviewed and insist with pride that he was “still a man”. The audience applauded. But what precisely did that mean? That he was still tough and would not let this thing “beat” him or whatever? Fine. But how is that not also available to a woman? Why is that distinctly “manly”? Gender is something we take for granted in a sense, but when we try to pin it down we find that it is hard to get a handle on. I believe I have a male brain and that male brains are generally different in some ways than female brains. We generally have better senses of direction, they are more perceptive in certain ways, and so on. Gender is an amorphous concept for sure. The topic just now is sexuality though, so how am I that different than a lesbian paraplegic? No, sorry to say it but being two-arms-and-a-head certainly raises some question marks where gender is concerned. In one sense, it’s clear as day that I’m a male. One just looks at me and knows it. In another sense, I may as well have no gender at all.
Let’s look at some things I’ve heard said. “99% of sex is in the head.” This one, fittingly, came from a high-quadriplegic, who of course really was only a head. He claimed that his other senses were heightened, allowing him to presumably enjoy richer visual, aural, olfactory, and gustatory experiences than others could. Sounds like bullshit to me though there’s some chance science could back it up if more of the brain becomes devoted to those senses when you’re a head. And do you believe this “99%” business even for a second? Consider if a woman asked her husband: “Would you take a 1% loss in the quality of our sex life if I never complain about you hanging out in bars again?” So the husband answers in the affirmative and the wife says: “Okay, then from now on I will never touch anything but your head when we have sex.” Square deal? Will it fly? But why not? 99% of sex is in the head!
This from a man with a spinal cord injury: “The act of sex, I have since found, is not complete without the bonds of love and friendship that take years to establish.” Why would it make sense for such a man to say something like this? For sure, even some able-bodied people say things like this, but personally I’m not buying it. But doesn’t this make perfect sense to a man who can’t feel his penis or the lower half of his body? Yes, it’s not complete without those bonds, because you can’t feel the rest of it! And also he is likely to need a “supportive” and “understanding” partner, because he lacks so much and his condition is so horrible. And by this guy’s lights I guess I’ve never had a ‘complete’ sexual experience since I’ve never dated a woman for more than about a year. If only I had him around to tell me what I was missing before I got hurt.
Here’s one I love. “The occasional bowel accident hasn’t posed any major problem.” So not only is the guy fucking his girlfriend’s unfeeling corpse, but it shits on him “occasionally”. Sorry if I’m a pantywaist for it, but this kind of stuff makes me want to barf. So does having “sex” with high quadriplegics who are just heads. One in particular, in a video I saw, gets a woman to say on his behalf that “He can still fuck.” Someone please let me out of this madhouse! I can’t breathe!
They also tell you that guys can still have orgasms, but that they just have to learn to use other parts of their bodies as erogenous zones. That’s nice. I guess I can still feel most of my nipples, but honestly I feel a little silly asking a woman to suck my earlobes and nipples until I “orgasm”. That’s stretching things just a little in my book. Really, give me a break! Maybe it’s physiologically plausible in some strange way, but I’m not on board that train. If I want someone to lick my ear for an hour, I’ll get a dog and a jar of peanut butter because it would seem courteous to save my poor girlfriend the trouble. What if she did it for a really long time and it didn’t work? I wouldn’t want her to feel bad, right? So I’ve heard of “vaginal” and “clitoral” orgasms, but does anyone have advice on how to fake an “ear” orgasm? Is it ear-llatio or ear-ilingus?
It is generally agreed that sexuality involves more than penis-in-vagina and I’m not disputing that. Sexuality is everywhere. It’s in the way people move, in the way they talk, the way they dress. A physically strong and beautiful body is powerfully sexual and so is being capable of defending women in dangerous situations. When I held them in my arms they would tell me how safe I made them feel. They knew I was a fighter and they knew I had the courage to protect them if I had to. That capacity gave me a feeling that was very important to me. Now I’m completely fucking helpless in that regard. What I mean is there is no way I’m fighting anybody now. But this needs elaboration.
First of all I’ll just point out that most people have absolutely no realistic concept of fighting and physical violence. I’ve fought about fifty other guys. I’ve had the living shit beaten out of me a number of times, been knocked unconscious, put in the hospital to get stitched up more than once, and been punched and kicked in the face more times than I can count. I’ve also put other guys in hospitals for stitches, broken their bones, knocked them out, given them concussions, and so on. So I have a right to talk about fighting and honestly most people have no idea. I’ll give two examples. Once a girl made it very clear to me that she felt she would be a formidable match for me it a fight because she had gone through some self defense training. No, she meant it, and she weighed about 110 pounds. The truth is that I could have literally killed her in about five seconds: two to knock her out, three to stomp her head until it smashed open like a melon. And one I always love is “I don’t care how big a guy is, you kick him in the kneecap and he’s going down.” Remember that one next time a 260-pound defensive lineman is barreling at you in a murderous rage. It will come in handy.
So people run their mouths about fighting either with no understanding or because they want to sound tough and of course the members of the disabled community are no exception. A memorable clip from that movie “Murderball” shows Mark Zupan, a quadriplegic, saying “I’ve gone up to people who start talking shit and . . . I go ‘What you’re not going to hit a kid in a chair? Fucking hit me, I’ll hit you back.’” And I’ve seen paraplegic self-defense videos, heard quadriplegics talk about how they study martial arts and so on. So maybe for the inexperienced the idea that they could put up fights against other, able-bodied guys could sound plausible. But I know both sides of the coin and there is no paraplegic in the world who could even have come remotely close to being able to fight me when I was able-bodied. Don’t even fantasize about it. But there is one way people in wheelchairs can be effective in certain situations, specifically because almost nobody would ever think of getting physical with them.
It’s something like an old lady hitting you with her purse. What do you do in that situation? Surrender! You don’t even try to take the bag from her, you just get out of there and have a good laugh over it. And it’s the same with guys in wheelchairs. If a guy in a wheelchair had hit me I would have done everything I possibly could have to just get away from him because of how impossibly dishonorable getting violent with him would have been. Once in New Zealand I fought a guy and afterwards his friend, who was on crutches, dropped them and hopped toward me saying, “Come on!” and I was perplexed and told him flat out that of course I couldn’t fight him because he had a broken leg. So guys like Zupan say things like that maybe because they want to hold on to the idea of being physically formidable in comparison to normal guys, and maybe because their conditions are so physically humiliating that they would just love to take a beating from a normal guy because it would at least make them feel they were worthy of fighting.
But something happens when situations get violent. It’s intense and there is no longer any time for games. A switch goes off and any irrelevant distractions are filtered out and at those times cripples are irrelevant distractions. There is no way any cripple is going to effectively intervene in a violent situation. At times like that women and people in wheelchairs can generally be ignored. Why do I go on so much about this? Because it hurts so badly and once again I hate the lies. My fighting days are over. When you are a strong man there is a certain awareness you have of being in control of situations. It’s a kind of power. You know others are aware of it and that you can expect their behavior to generally stay within certain bounds. For instance if I was with the girl I love and someone wanted to call her a filthy whore in front of me they could feel because if I objected they could just say “Shut the fuck up cripple.” Because that’s really the correct response. I could to get in the person’s face but when it came down to it I might just be treating my girl, in addition to being called a whore, to watching me get dumped on the ground and laughed at. Maybe I could give a very small man some difficult but not an average or large one. Not a chance.
Being so physically helpless is very hard and humiliating. The idea of being at the physical mercy of almost every other man is miserable feeling. I went from having the potential to be extremely dangerous and intimidating to being like an old woman. That would perhaps been acceptable to me when I was eighty years old, but not at this stage of my life. Right now, as a young man, it turns my guts inside-out. You might have noticed that I have not spent a lot of time talking about my personal feelings up until now. How so much of all of this makes me feel inside. That comes in the next chapter. My feelings about sexuality are especially painful for me but it’s hard to pinpoint things because of the nebulous nature of the subject. Like I said above, sexuality is everywhere.
It’s true that girls are still attracted to me. Not the way they used to be but in a different way. I don’t have the same kind of powerful draw I used to. And part of the reason they are interested has to do with them not really knowing what they are looking at. I’m still a decent-looking guy with a comparatively muscular upper-body. They in part see the illusion though because they don’t register right away that I’m two-arms-and-a-head atop a corpse.
Women tend to look at me more as being ‘cute’ now. I’m like a puppy. But I still remember the way they used to look at me. I was good with girls and a lot of them liked me. I could see in their eyes how badly they wanted me. They would look me in my eyes, or make gestures with their bodies that said “You can have me if you want.” It was an immensely powerful feeling. I loved to be the object of their intense desire. I loved to show off my physical power and capability and impress them. Maybe it sounds vain but everyone knows this! Now I just see the way women look at all of these other young, strong young men who are on the road to prosperous futures. I see the same looks in their eyes that used to be for me. They don’t look at me like that anymore. I don’t see that adoring, hopeful, desirous look in their eyes anymore. Wilfred Owen wrote a poem called “Disabled” about a young amputee home from war. I chopped it up to put just a few lines:
He sat in a wheeled chair, waiting for dark
And shivered in his ghastly suit of grey,
Legless, sewn short at elbow. Through the park
Voices of boys rang saddening like a hymn,
Voices of play and pleasure after day.
About this time Town used to swing so gay
And girls glanced lovelier as the air grew dim
In the old times, before he threw away his knees.
Now he will never feel again how slim
Girls' waists are, or how warm their subtle hands.
All of them touch him like some queer disease . . .
Tonight he noticed how the women's eyes
Passed from him to the strong men that were whole.
I’m having a thought here that I get often in writing this book and it’s the painful one that my efforts to get my feelings across are just hopeless. I don’t think it’s entirely true but still it’s an enervating thought I have to push through often. I try to speak precisely so you will understand me but feel that doing so takes away some of the power of what I’m trying to convey. My sexuality is gone! I am emasculated, castrated, impotent. The physicality of my sexual self, my power, my force, my virility, gone! Gone! I’ve gone from being a beautiful, vigorous, strong man to being an absolute monstrosity. A grotesque, hideous abortion.
Now when I was a young man I carried me pack
And I lived the free life of a rover.
From the Murray's green basin to the dusty outback,
I waltzed my Matilda all over.
Then in 1915, my country said, “Son,
It's time you stop rambling, there's work to be done.”
So they gave me a tin hat, and they gave me a gun,
And they marched me away to the war.
And the band played “Waltzing Matilda”
As the ship pulled away from the quay,
And amidst all the cheers, the flag waving, and tears,
We sailed off for Gallipoli . . .
Then a big Turkish shell knocked me arse over head,
And when I woke up in me hospital bed
And saw what it had done Christ I wished I was dead
Never knew there were worse things than dying.
And no more I'll go waltzing Matilda,
All around the green bush far and free
For to hump tents and pegs, a man needs two legs,
No more waltzing Matilda for me.
My grief lies all within;
And these external manners of laments
Are merely shadows to the unseen grief
That swells with silence in the tortured soul
Poe warned us about the human imagination, saying that we may not “explore with impunity its every cavern”. Certain thoughts, he said, “must be suffered to slumber, or we perish”. One such thought is that of being buried alive. He mentions how fearful the suspicion that such things have happened is, and goes on:
Fearful indeed the suspicion- but more fearful the doom! It may be asserted, without hesitation, that no event is so terribly well adapted to inspire the supremeness of bodily and of mental distress, as is burial before death . . . the rigid embrace of the narrow house- the blackness of the absolute Night- the silence like a sea that overwhelms . . . these considerations, I say, carry into the heart, which still palpitates, a degree of appalling and intolerable horror from which the most daring imagination must recoil. We know of nothing so agonizing upon Earth- we can dream of nothing half so hideous in the realms of the nethermost Hell. And thus all narratives upon this topic have an interest profound; an interest, nevertheless, which, through the sacred awe of the topic itself, very properly and very peculiarly depends upon our conviction of the truth of the matter narrated.
“Supremeness of bodily and mental distress” only has its full effect if you actually go to one of those places in your mind where, as Poe says, one cannot go with impunity, if you let your imagination go where it would rather not and try for a moment to apprehend what the actual experience of awakening to find yourself buried alive would be like you may briefly, before your mind recoils, experience something that could help you understand what I feel like in my body.
Describing what it would be like to discover yourself buried alive is hard because it represents one of the absolute extremes of human experience. Your imagination can approach it but never quite get there for it would completely unhinge your mind and soul and fling them outside the bounds of sanity. But however repugnant to our conceptual grasp such possibilities might be, thinking on them can give us a perhaps a momentary insight into something we hope very much we will never have to experience.
The feeling I experience is a frantic, frenzied, desperate distress. It is a feeling of such indescribably painful, anguished, and helpless confinement. How can I describe it? I’ve seen pools that have what amount to giant sheets of bubble wrap floating on them to keep the heat in. It’s something like I imagine it would be like to fall on top of one of them, into the pool. It would engulf and suffocate you. You would desperately writhe to get free. Or in a movie I saw a man handcuffed to a pipe on a sinking ship. The water was coming up around him as the ship went down. Can you imagine how frantically terrified you would be in that situation? That’s what I feel like. I want to scream but I don’t. The feeling is absolutely nightmarish. I’ve heard stories about people with spinal cord injuries that lie on their beds and just scream over and over and over. I know what they feel like. I need to move. I need to move.
Some disabled people may cite all of this as overly dramatic and point out that they, in contrast, do not feel the slightest bit uncomfortable in their bodies. They might say I am hysterical, or tormented by a disordered mind, or what have you. What I say is that they have changed in such a way as to be fundamentally different beings than me and can no longer sympathize with what I find the most human of experiences. I don’t want to feel anger at these people but sometimes I find myself despising them. I have no desire to begrudge other paraplegics their happiness, though many of them evidently have every desire to begrudge me my feelings. I find them monstrous and inhuman the moment they want to insist that my feelings indicate from some kind of defect within me. If you are locked in a cage, screaming, raging to get out, what does it matter to you if you look over and see ten-thousand others caged right alongside you, placidly absorbed in this or that activity? What has that to do with you? Does it help you to think that you might someday be like them, happy in their cages? A clam is comfortable in its shell and thinks all of the other animals should envy it. A clam does not see why an eagle would rather die than be a clam.
As far as I feel about my body, who do you love more than anyone else in the world? Think of that person. Now picture being chained to their bloated corpse- forever. What was once my beloved body is now a corpse. I can only describe the feeling it gives me as supernatural revulsion. It’s unthinkable. Flabby, misshapen, atrophied, etiolated. When my legs kick and jerk me around, they seem to me like something indescribably loathsome. Not warm and mammalian or even reptilian. It’s like a crab or a spider. Like the twitching and jerking leg pulled off of a spider. A thing with no soul. Cold and hideous, harrowing, ghoulish. A grotesque, obscene, and hideous thing. It horrifies me and tears at my sanity. Everything inside of me screams to get away from it. How would you feel chained to your beloved’s ghastly, distended corpse? Sometimes when I am around others I feel as if I am struggling not to flinch with tarantulas crawling on my neck in my efforts to hide from everyone the torture I’m enduring. This is something I think almost nobody realizes about me. Whitman said it:
“Beneath this face that appears so impassive hell’s tides continually run.”
A hundred times I’ve sat in class with an expressionless face, looking as if I’m listening to the professor talk about contracts, criminal law, or what have you. What’s really going on is that I’m having horrible thoughts of laying my stomach open with a knife and bleeding to death. Or feeling like I’m going to go insane in the horrible prison I now live in. You can’t possibly imagine how hellish it is. I think a lot of people will be very surprised to hear of my suicide. I smile and laugh and make pleasant conversation all the time. I’m sure people look at me all the time and think I’m happy. And when I smile and laugh I’m not faking it. I’m still capable of those things in earnest. But I am never truly happy and a hundred times per day I have my guts wrenched to the limit of possibility by the nightmare that my life has become. Dalton Trumbo wrote a book called “Johnny Got His Gun” about a man who is hideously mutilated. No legs, no arms, blind, deaf, mute. This is what he feels at one point in the book:
“Oh no. I can’t. I can’t stand it. Scream. Move. Shake something. Make a noise any noise. I can’t stand it. Oh no no no. Please I can’t. Please no. Somebody come. Help me. I can’t lie here forever like this until maybe years from now I die. I can’t. Nobody can. It isn’t possible. I can’t breathe but I’m breathing. I’m so scared I can’t think but I’m thinking. Oh please please no. No no. It isn’t me. Help me. It can’t be me. Not me. No no no. Oh please oh oh please. No no no please no. Please. Not me.”
His experience is that of being a disembodied mind. In the world but outside of it all at once. He exists but he does not exist. This is a distinct feeling I experience and I just don’t know how to describe it. There is a part of me that is locked inside forever and can never express itself again. The Eliot quote at the beginning captures it. Part of my very soul now exists between the idea and the reality, between the conception and the creation, between the potency and the existence. It is a feeling of the most utter spiritual desolation, an empty wasteland:
This is the dead land
This is cactus land
Not only is two-thirds of my body paralyzed, but so is a huge part of my innermost self. It wants more than anything to feel and experience life. To exist. But it exists now only in a place between reality and nothingness with no hope of ever coming back. With no hope of ever being unchained. All it can do is degenerate in the solitary place it has been forever exiled to. I thought of a way to describe it.
In philosophy there is a position called Cartesian dualism and it happens to be the default for most non-philosophers when it comes to how they conceptualize the distinction between mind and body. The two are essentially distinct in that the body is “extended” in the sense of having dimensions in physical space, while the mind is not a physical thing at all, but a non-spatial thing. So one could not ask the question “Where is my mind?” because it does not exist in space at all, so there is no “where” about it. There are a number of problems with Cartesian dualism and perhaps the easiest one to explain is the problem of interaction. The problem is, “How does a thing that is essentially non-physical interact causally with a physical thing?” Descartes saw this problem and solved it by saying the interaction takes place in the pineal gland, which really doesn’t solve the problem at all but it sounds good and fits in nicely with the philosophical tradition of making things up in a pinch.
I am now, in part, a disembodied Cartesian mind. A mind that full of skills, capacities, dreams, desires, love, passion and a thousand other things that can no longer be expressed. It is constantly at work thinking of new ideas for living life. I could build this, I could jump up on that, I could put this there, I could make this gesture, I could make this joke, I could initiate this, and so on and so on. I am a disembodied Cartesian personality. I have the brain of an able-bodied man inside of my head so almost all of these ideas, to be pulled off right (or at all) require my working body. Over the last thirty years my brain has been undergoing constant fine-tuning to control my body and bring the person I am into the world. But now there has been some colossal mix-up and the deepest parts of me are now incompatible with my reality. My nature cannot come into its own. I cannot be who I am. I am Rilke’s panther:
His gaze, weary from seeing only bars
can now see nothing else
To him it is as if there are a thousand bars,
And beyond them, no world
The gentle slink of his powerful, supple stride,
Turning in circles as if bound by chains,
Is a ritual dance of strength around a center
In which a great will stands paralyzed.
But now and then the curtain of his pupils
Silently rises – Then an image enters,
Rushes through his tense, arrested limbs,
And echoing inside his heart, is gone.
I feel enormous inside. The tremendous desire and longing I feel inside of me span oceans. I am absolutely and heartbreakingly in love with life. But this is not life. This is what I don’t think anyone understands. I don’t feel small inside. It’s not that if only I had the strength I could live a triumphant life as a paraplegic. It’s that if only a life I could love was possible I would push toward it with all of my might. Through this experience I have come to be aware of strength I might never have known before. The things I would endure to escape from this cage have no limits. I would suffer any pain, endure any hardship.
Recently I went to a park with woods all around. I grew up in the northeast and the woods in Nashville are similar. My love for nature is almost unbounded. As I looked at the woods I thought of a poet who once described “tears that take a full day to form”. No phrase could possibly better describe the kind of aching sorrow I felt as I sat there gazing at those beautiful, joyous woods. I was dying inside, staring at something I was profoundly, adoringly in love with but could not reach out and embrace. How I longed to bound through those woods, to climb and explore and be free. But they were part of another world I would never live in again. Do you know the feeling of your heart breaking? It’s something I feel all the time now. My heart breaks over and over and I feel it every time I set eyes on something I am in love with and can no longer do. It breaks slowly and agonizingly sometimes, but other times it’s a sharp pang like a knife twisting in my soul.
Another thing I feel day after day, constantly, is unbearable humiliation. This is the best word I can think of for the feeling, but it’s not humiliation in the sense of being synonymous with “embarrassment”. I can feel it when I am all alone. It’s just the ever-present feeling of never being able to have what I want, do what I want, or be who I want. A good example is the sexual humiliation I feel all the time. I have a tremendous desire inside of me for sexual gratification but it is now impossible. Is it so strange to think how powerful that desire is? Look at male animals in the wild, how they fight unrelentingly and often kill each other over that desire, so strong is it. I have that inside of me and can never discharge it. I can never make love to a woman again. I am forever sexually humiliated, cuckolded. Legless, dickless, dragging around a corpse.
Humiliation. Constantly forced against my will. Constantly deprived of the things I want. Enslaved to this horrible corpse I can never get free from. A slave is precisely what I feel like. A degraded, humiliated, slave who is helpless to improve his miserable lot in life. Frankenstein called himself “A miserable spectacle of wrecked humanity, pitiable to others and intolerable to myself . . . wasting in impotent passions.” That’s what I feel like every single day. I am forced to feed on the scraps from life’s table. I will not! My incapacitation is agonizing. The frustration is unbelievable. I said it once already and I’ll say again that I am so tremendously physically disabled that it defies description. Almost everything I do burdensome, onerous, hindered, agonizingly leaden. Words just fail to explain it.
Life without the courage for death is slavery. –Seneca
That quote expresses exactly how I feel. I have quoted a lot of poets in writing this and it’s because it’s often their power to get past our more mundane, everyday experiences that makes their words needful. They push the bounds of our normal concepts and have the ability to give us glimpses of things we don’t usually imagine. Though I believe I have a talent for being clear I am constantly at a loss to get across what I have been feeling and experiencing. Once I asked a religious person what he thought hell was like and he told me the definition of hell was simple, it was just being away from God for all eternity. I’m not religious but what that man said could not be a better description of what I feel. God is an idea religious people put their whole selves into. Their hopes, their dreams, their passion. It’s the same for me but without God. The life I dreamed of and loved with all my heart is gone forever and there is nothing I can do about it. And it’s not just slightly changed, but utterly devastated. It’s an exquisite and fantastically complex work of art dashed to the ground and broken into a million pieces. The damage extends in every direction, even into the past. My body represented sixteen years of work in the gym, but not only was there the physical work, there was the reading of magazines, articles, and books. I was an expert in lifting weights. My skills as a carpenter, roofer, plumber, gardener, all devastated. My ability to conduct my everyday life with wonderful efficiency, devastated. The wonderful way I was able to relate to other people, devastated. My sex life, devastated. My social life, devastated.
I have talked about this already but I have to try and make it clear again because it is one of the most powerful things I feel. Salvador Dali said “The only difference between me and a madman is that I’m not mad.” I always thought this was funny but it has taken on a profound meaning for me because I think the experience of being sane and being constantly told that what I feel and know is not true is something very much what it feels like to be mad. So many around me talk as if the deepest, most human parts of my experience are illusions. I am not as disabled as I think, I still have my personality, I am still the same person, and so on. I end up in a desperate state and it goes along with the inability not to express myself. Not only can I not communicate so many of the normal, everyday, human things I see going back and forth between others constantly, but I cannot share many of my profoundest experiences either because the factual basis of a great deal of what I feel is so vigorously disputed and resisted constantly. I have to say again that many people give me their ears and love me and listen to me, and very often I can get across some of my feelings. But the general rule is that when it comes down to it, I am alone with most of these things.
Something else I notice seems quite deep and I can only explain it somewhat speculatively because it’s not at all clear to me how properly to understand it. Certain of my memories seem to be disappearing. For example, when I try to remember doing things that involved running, jumping, and sex, the memories seem less real or vivid than they used to. My theory is that this is connected with my loss of sensation and motor control. Since I can’t move or feel my lower body anymore, the parts of my brain associated with those things are probably “atrophying” in the sense that those neural pathways, or connections, or whatever, have become weakened from disuse. When I first got injured, I could still quite clearly “will” my legs to move, as far as I could tell. That is, I could do everything I used to do to move my legs, except they didn’t move. Now, I don’t seem able to do even that anymore. That is, I don’t “remember” how to move my legs, or what it is like. At least I don’t experience the same thing when I “try”. What I experience is something like what one might feel if he tried to see if he had telekinesis by “willing” a coin to slide across a table. That is, I try to will them to move, but since I can’t do it anymore, I imagine I somehow know what I should be doing and direct that feeling at my legs. Perhaps in a sense since I can no longer verify what the feeling is because it has no correlate in my legs actually moving, I don’t even know what it is myself. That is, on what basis can I even know if it’s the same feeling? And what can that even mean in the absence of any verifiable criteria for comparison?
My guess is that when a normal person remembers running, it involves a bit of imagination and the parts of the brain that are associated with control and sensation of the legs light up a bit and fill in the experiential part. But since that part of my brain has atrophied, I cannot remember running like I used to. That is, the parts of my brain that would usually help create part of the memory are not working the same, so the memory is not as similar to the experience itself, but rather more abstract. I expect some memory of the experience, and get a blank, but I feel like I should remember, so my mind starts to compensate. I “think” my legs moving one in front of the other. Yes, I might think, and there must have been a thudding and up-and-down as I went, so that was there too, and the sensations going up my legs.
If I imagine taking another person’s hand in mine, or kissing someone’s face, or someone touching my face, I feel something similar to sensation in those parts of my body when I imagine it. Something like proprioception. But my lower body is now just a void, and its death started the creation of a void in my brain. Not only can I not feel it, but my ability to imagine feeling it is disappearing, as is my capacity to remember feeling it, and doing things with it.
Many think that emotions are independent of our bodies in that they exist in our minds only. That is, the common view is that there is no connection between what we do with our bodies and what we feel emotionally. But this is not true. I spoke above of desolation and this is part of what I mean. It seems I am unable to experience certain emotions and feelings at all because of my lack of bodily mobility. If this sounds odd, try the following experiment. One day, simply stop making any facial expressions. Keep your face completely expressionless for an entire day in the normal course of your interactions with others. Go to a party. Go to a funny movie. Can you find the movie hysterical without moving a single muscle on your face? Try it. Can you have a rip-roaring blast of a time at the party without so much as cracking a smile or moving an eyebrow? Why do you think this is? Now can you see why the ability to feel certain kinds of joy has been taken away from me? Jump for joy. Can you have the joy without the jump? My confidence was in the way I would enter a room, interact with people, walk, move, position myself, and a million other subtle things. This injury creates an emotional wasteland for me.
My overall experience of life is abysmally impoverished. That’s the best word- impoverished. From the time I wake up to the time I go to bed almost everything I do is far less than it could have been. And mornings are a particularly difficult time for me in part, I think, because my mind seems to sort of “reset” during the night so that I wake up every morning ready to be a normal person again. So I get to rediscover my horrible state every morning and heavily set about living a life I hate. Also, I often have horrible feelings about sex in the morning, feelings of intense desire. I don’t know why but I heard once that testosterone levels peak in the morning so my guess is that has something to do with it. I don’t know.
What life is compared to before becomes more and more vague and indeterminate as time goes by, but there are flashes of realization now and then. The repressive mechanisms are powerful, but truth comes through from time to time. I think many probably have a similar experience with the fact of mortality. We don’t think about death all the time, and sometimes the idea just flits through our minds, or strikes a glancing blow, as it were. Now and then, however, it scores a direct hit, and shakes us to the core. We see its face. My mind is constantly moving toward and away from the terrible reality that is now my life.
Devastation! My ability to share my skills with others. To teach them. To take control of situations. My ability to show love! I cannot even love the people in my life the way I want to. I can’t just go up to someone and spontaneously give them a hug. I can’t pick up a child and spin her around in the air. I can’t play and run and be joyful and free. Wherever you go, there you are. For me it’s wherever I go, there I am NOT.
I felt so gifted and special. So fantastically remarkable! Like one in a million, like a star. I felt such tremendous power inside of me that I could hardly stand the joy of it. So much had been held in waiting inside of me, so much patience and painstaking care I had employed in developing myself for the time in which I would come into my own. It was to go halfway around the world, through wondrous lands and adventures, and then to law school, where I was to shine! I felt so magnificently singular, so brilliant, so unique, so wonderful. I don’t know if anyone will ever understand what this injury has done to me, what it has taken away from me. But the game is forever fixed against me. I can never win, never triumph, never “overcome” because having a satisfactory life is now impossible. Because to me, no life as a paraplegic is satisfactory. I can never be happy like this.
A parable: An eagle lived on a mountainside and every day he soared over the surrounding land, hunting, exploring, ranging here and there, facing adventures and perils, experiencing new things. He was filled with feelings of boundless freedom and power. He lived with his beloved lady eagle, the two of them together strong, dangerous, beautiful, and majestic. One day he was captured by a farmer, who clipped his wings and put him in a pen with the domestic chickens. The anguish and pain in the eagle’s heart were unimaginable. Such agony had never before been seen nor even imagined on Earth. He alternately tore at himself, cried out in despair, raged at the wire of the pen, or laid on the ground piteously weeping and despairing of the emptiness inside of him. But all the chickens had for him was contempt. “What’s his problem? Is our life not good enough for him? Who does he think he is?”
What makes the lifers and the disability enthusiasts inhuman to me is their complete incapacity to feel sympathy for what I am going through. Many of them simply can’t, but there are also some that won’t and where the line should be drawn is up to you to decide. When I say that some won’t what I mean is this. If they admit that I have lost something irreplaceable and of tremendous and incalculable value, they at the same time must admit that they also cannot have what I’ve lost. I can be upset for a while, yes, but it’s just because I don’t yet realize something, and it is simply expected that at some point I will see that paraplegic life is as good as any other life. This is the foundation stone of a disabled person’s denial. It is denial of the fact that able-bodied life varies from paraplegic life in ways that can make it soaringly, wonderfully, and gloriously better, richer, and fuller by the standards of perfectly reasonable and sane people. Put another way, it is the denial that the eagle, for example, could be justified in his feelings about being disabled. But no, I’ve gone one step too far, because justification has nothing to do with it, for what we are dealing with is something more fundamental than even justification itself. The eagle is in despair simply because of what he is. The eagle is a soaring, ranging, quick-eyed, aggressive, hunting, fighting wild animal. We do not ask him to justify his inability to live in a cage, because living in a cage is fundamentally opposed to his very nature.
It’s like Wittgenstein said “If I have exhausted the justification, I have reached bedrock and my spade is turned. Then I am inclined to say ‘This is simply what I do.’” I have never written a symphony, but Beethoven did. Consider some things Beethoven said:
Music is a higher revelation than all wisdom and philosophy.
Music is the one incorporeal entrance into the higher world of knowledge which comprehends mankind but which mankind cannot comprehend.
Music is the wine which inspires one to new generative processes, and I am Bacchus who presses out this glorious wine for mankind and makes them spiritually drunken.
Tones sound, and roar and storm about me until I have set them down in notes.
Beethoven can write music, thank God, but he can do nothing else on Earth.
So who will go to Beethoven, strip him of his ability to express himself through music, and then tell him his life is “not worse, just different”? What beast, what inhuman monster would say something like that to him? No, Beethoven was a composer and a creator and such things were not incidental, accidental, or dispensable to him. If you took away Beethoven’s ability to create music, you took away his soul. The tones that would “sound, and roar, and storm about him” needed to come out. Everybody can see and understand this. One cannot take away Beethoven’s music and then tell him instead to take up pottery. Why then is it so hard for people to see that paraplegia has taken away my soul? My ability to create and express the things that want to burst forth from the deepest parts of me? The joyous and wonderful and beautiful things that sound, and roar, and storm inside of me, and which I want to bring forth into the world? I can never justify myself on this account. That is simply what I am. That is simply what I need.
The lark’s on the wing
The snail’s on the thorn
God’s in His heaven-
All’s right with the world!
I don’t want the things I’ve written about in this book to be true. You don’t want them to be true either. But most of you have a little more leeway than I do on that point. So to get everyone back on track believing what they want and to save the disability enthusiasts the trouble, I’ll write out a little speech to sweep all of the bad thoughts aside. So please everyone, take a deep breath and let the loftiness carry you away.
I’ve recently had occasion to read Mr. Clayton Atreus’ book, “Two Arms and a Head” and must say that I was deeply saddened by it. As Herman Melville once wrote, “It is a thing most sorrowful, nay shocking, to expose the fall of valor in the soul.” To say anything unflattering about Mr. Atreus seems, given a proper regard for his tragic end, perhaps somewhat less than magnanimous, but keeping others from falling into the kind of pitiably deluded thinking he displayed represents a higher duty than to make excuses for his glaring shortcomings as a man. Granted he may have been intelligent, but it is a shame his intelligence could not have been used for something other than making long-winded and shameless excuses for his incapacity to handle the challenges life dealt him.
Those of us who are champions of life must not focus on those who have fallen by the wayside, on those who have proved unable to reach for the light rather than being overtaken by darkness. Being a paraplegic does not change who a person is. It’s true that it might make some things in life a little more challenging, but everybody has challenges to deal with. Disabilities cannot get in the way of people living full lives, only their attitudes can. We are only limited in life to the extent we are willing to accept limitations. A person is not his legs, his arms, his eyes or his ears, but something far greater which cannot be affected by any kind of trauma to his body. Regardless of what happens to him, his personality and the deepest parts of him remain intact.
Sounds pretty good doesn’t it? I’d go on writing but you get the point. Just a few examples of the kinds of pronouncements that are meaningless, nonsensical, or irrelevant to me. But they certainly sound nice.
Could you on this fair mountain leave to feed,
and batten on this moor?
Gertrude may have been willing to go from “this to this” but I am not. I despise being paraplegic and other people’s views on it could not possibly be of less concern to me. Why? I am not other people. If I want to know something about organic chemistry, I will consult someone who is an authority on it. But where the question of value touches my own life, I am the ultimate authority. I am who I am, I love what I love, and given what I need from life, existence is no longer tenable for me. Much of what you think about suicide is probably wrong. Much of what I thought about it was wrong. I agree with Judy Collins: “We have to fight off the demons that have been hanging around suicide for centuries.” We try to cram far too many things into that single word, to the point where it means far less than we usually think and does not tell us anything particularly interesting. Camus called suicide the fundamental problem of philosophy, asking “Is there a logic unto death?” My answer is “no” but neither is there, in my mind, a logic unto life, in an a priori sense. In “The World as Will and Representation” Schopenhauer called life “an episode unprofitably disturbing the blessed calm of nothingness”. We can reasonably ask why he went on living for forty-one years after its publication. Dishonesty? Can one’s entire existence be dishonest? Was he lying or maybe just lacking whatever it takes to “dash the cup to the ground” as Dostoyevsky says? And though I thought Cioran was generally to be avoided, he said something that fits here so perfectly that I cannot resist including it: “A book is a postponed suicide.” Finishing this book is now the only thing that stand between me and death. That and of course getting up the nerve to “wield the knife”.
Many people speak in the most cavalier manner about matters of death and suicide. This is not surprising. Maybe the most common word used in talking about suicide is “coward” or variations of it. Basically, the theory seems to go, everyone that endures hardships in life is brave and strong and anyone who decides that life has become unacceptable for whatever reason is not. Such “coward” talk makes me think of when people insist that they would not have stood for being enslaved, or criticize the Jews for not fighting back against the Nazis, or deride men depicted in movies for showing fear on battlefields when death is whizzing about their heads. Recall how Dostoyevsky defined man as the “ungrateful biped”. My suggestion is “biped that talks tough”. Maybe I am no exception? Many times I have seen men anxious to throw in their two cents about fighting virtually shit their pants when the possibility of taking a few punches was in front of them. But of course such men love to dreamily fantasize about the glory of engaging in some sort of brutal, bloody, medieval battle. So yes friends I realize that everyone else out there fears nothing, is ready to brave any danger, and can unflinchingly stare down death. Forgive me then for so shamelessly publishing my thoughts and not feeling for a moment like the despicable coward so many seem sure I am.
Something I want to be perfectly clear on is that nobody could have done anything to prevent my suicide. This is very important to me and I despair a bit at the thought of not being able to control others’ feelings on the matter. What can I say to convince you? You will object that I cannot say this with absolute certainty and I must concede that you are right. Maybe if someone had introduced me to the hobby of building model ships inside of glass bottles I would have been overwhelmed with passion for it, dedicated my life to it, and lived to a ripe old age. I cannot stop people from entertaining counterfactuals and wondering if I could have been saved. I can, however, make it clear that I knew what I had. That is, I can acknowledge all of the things that were available to me.
I had just about everything possible. I was a student at one of the best law schools in the country, surrounded by people that would have done anything for me. I absolutely believe this. People went to extraordinary lengths to encourage and support me and would have gone further. If a cure came along and it cost $1,000,000, people would have raised it for me. I honestly believe that if I had really needed some kind of accommodation at school men with tools and jackhammers and concrete trucks would have appeared more or less immediately to give it to me. There was money, psychological counseling, tutoring, medical insurance, physical therapy, and every kind of imaginable support abundantly available to me. People encouraged me, praised me, hugged me, loved me, and told me they would do anything for me. And I believed them.
I am young, strong, extremely intelligent, and generally far more capable than the vast majority of paraplegics. No doubt there are some I could never match in certain respects, but I nonetheless believe I can do more or less anything that any other paraplegic can. Others will of course question this and there is no way to prove it, but that in part is the point: I need a reason to prove it. I imagine the following offer: “If you wheel your chair around the world, at the end you will be miraculously and instantaneously healed.” People can think what they want, but I would leave immediately without a second thought. I would stuff my backpack full of catheters and shit-digging gloves, put on some warm clothes, and call my Grandma and the girl I love to tell her what I was doing. I would promise to write often. Then I would roll out the door. I have tremendous respect, as I have said, for Rick Hansen and do not pretend rolling around the world would be easy or that I could do it as admirably as he did, but I would try or die.
I know I can have a house, a car, a wife, kids, a lucrative career, and so on. What is left of my personality is still sufficiently attractive to make people love me and they would get behind me every step of the way through life. Let nobody ever think they let me down or could have done more for me. Anyone who was part of my life and is ever troubled by such thoughts should remember the following: “If you throw someone a life preserver and they turn around and swim away from it, what can you do but let them drown themselves?” No, I had everything possible and in fact die with many unpaid debts of gratitude, so I ask forgiveness for that. Thank you friends. You were wonderful to me.
So first I want to remind many of you of something you already believe: that life is not intrinsically valuable. Put another way, being alive is not necessarily better than being dead. Of course many will deride this as pessimism or nihilism and espouse the opposite view but that has little to do with what they really think. Life alone, without qualification? How meaningless and devoid of value can you possibly get? But we often hear expressions like “every day above ground is a good one” and “everything is better than being dead”. So as I have already shown in other cases, all we need here are some quick counterexamples.
You have two choices. Think of the person you adore most deeply. The person who is your life and love, or as Kierkegaard puts it, “the delight of your eye and the desire of your heart”. The first choice is that that person will die tomorrow, instantly. He or she will hear a pretty bird song, look to where the sound is coming from, and then be struck in the back of the head, lights out, never knowing what hit them. The second choice is that they will be kidnapped by a serial killer- I’m talking about a real monster- and kept chained in a basement for the next year. They will routinely be raped, as Voltaire’s Cunegonde was, “to the limit of possibility”, tortured with great creativity, humiliated, smeared with feces, starved, forced to eat nauseous things, and finally disemboweled and killed in a protracted, ritualistic ceremony lasting days. You know, the kind of thing that happens every single day in this world while all-loving God watches over us from his place in heaven. So which will you choose? I won’t make any assumptions here, but notice that if you choose the first, you do not think life is intrinsically valuable. QED, easy as pie! Remember our assertion a few chapters back- if you believe something you will act in accordance with it, or you don’t believe it. And I’m just kidding, I will make assumptions here- nobody will choose the second. We would all sooner subtract a year from the life of someone we love than subject them to that. THEREFORE we do not believe that being alive is always better than being dead. Some might think this an obvious point and that I’m gratuitously indulging in a spectacle here, but no- people need to be reminded. The words that allow them to forget are far too close to the tips of their tongues. Finally, here it comes: “Are you comparing paraplegia to . . .” But friends I have already addressed this objection above, in its general form so you can apply the rule yourselves.
Victor Frankl’s book, “Man’s Search for Meaning” was recommended to me after I was hurt. I read and greatly respected it. It didn’t save me, though the kind of thinking in it comes closest to anything that could have. In fact, I’ve just looked over it again and will go on at some length about it here. I like Frankl and think he is the kind of man who is needed to help people in despair. His therapy is powerful. For my own part, I found his error in pushing personal responsibility and meaningfulness in life too far, making them general to the point of meaninglessness. But really his philosophy fails only around the outer edges, in extreme cases. I believe that people exist who fear nothing, need nothing, and can endure any kind of pain imaginable. I’m not one of them but they exist and I’ll mention one in a moment. Such people, then, can dispassionately choose to endure anything that will not kill them. I don’t claim to understand such people, honestly, because I think many of our normal concepts break down with them. The concept of pain, for instance. Does a man who can maintain a calm expression while you run his arm through a meat grinder experience pain at all? If you don’t think such people exist, you are wrong. Like I say, those people baffle our understanding. But what I’m not sure of is whether it is possible to choose one’s attitude. Here is probably the most famous quote in the whole book: “Everything can be taken from a man but one thing: the last of human freedoms- to choose one’s attitude in any given set of circumstances.” Precisely what is meant by “attitude” here seems crucial to me, but in the way we usually think of it, an example of an attitude could be “my attitude is that being a paraplegic gives me the opportunity to live a far greater and more gratifying life than I ever could have before”. The idea that I could simply choose this attitude is not only false, but absurd and insane.
On the whole, I think highly of the idea of pushing the limits of one’s personal responsibility because it makes one broader, larger, more expansive of a human being. I’m just not sure the idea can be applied everywhere and indiscriminately. One salient example is how religions hold people responsible for not believing in God. This just betrays a fundamental misunderstanding of the nature of belief. If you don’t see what I mean, try an experiment: this very moment: believe there is a living, full-sized polka-dotted rhinoceros in your kitchen. Can you do it? No, you can’t, and neither could I believe in God even if I tried. The idea of personal responsibility has applications but not with respect to beliefs and its domain in the realm of attitude is not absolute. I pointed out to one of my professors that going too far with holding people responsible for their attitudes was bound to be harmful in that it could undermine the notion of compassion. What I mean is that if we try to make people too responsible for how they feel, we can never sympathize with their emotional pain. For example, if a person comes home to a slaughtered family, we don’t tell them to “choose” to not be bothered by it. My professor replied that he regarded the threat small in comparison with the danger of falling into error at the other extreme given the prevailing conditions in society where, at least in our country, the idea of personal responsibility is assailed and undermined at seemingly every turn. Another plausible sense of “attitude” could be exemplified in “I won’t enjoy it, but I’m going to do it.” This might be more in line with what Frankl means. What I’m saying here is that the idea that we are free to do things can be extended more broadly than the idea that we are free to feel however we like about them. I have always found this expression amusing: “You’ll eat it and like it!” Why? Because it’s just mock tyranny to an outrageous degree. Not only will you do what I say, you will feel how I tell you to about it! But it is also funny for being absurd because nobody can control another person that much. Indeed, we cannot even control ourselves to that extent.
And while we’re at this point, let’s not be so quick to think that we can just do whatever we want either. Something I find many philosophers and psychologists do is to ignore how fragile human beings are, and how liable we are to break and malfunction. Nothing is impervious about us. Not our spirits, our minds, our souls, not anything. I happen to have an intact mind, for the most part, but the brain can be damaged in any number of ways and brain injuries can betray some of the darkest and most horrifying truths about the kinds of beings we are. Just hope it is never you! Anyhow, I mention this because I think it may actually approach physiological impossibility for some of us to choose certain actions that others can freely choose. We are talking about suicide so I will give an example and a counterexample. I’m thinking of something that went on when the Twin Towers were destroyed. The buildings were on fire and in order to avoid burning alive, some people jumped to their deaths. Did they have to? “In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end.” That’s Frankl, and he could not have been more unequivocal. So were those people not brave? Okay, so you think this is an outrageous example, but that’s only because you are a weakling and a coward who has not heard of that god among men, Thich Quang Duc!
For those of you who don’t know, Thich Quang Duc was Buddhist monk who in 1963 self-immolated, or burned himself to death, to protest the persecution of Buddhists in South Vietnam. An onlooker commented:
Flames were coming from a human being, his body was slowly withering
and shriveling up, his head blackening and charring. In the air was the
smell of burning human flesh. . . . as he burned he never moved a muscle,
never uttered a sound, his outward composure in sharp contrast to the
wailing people around him.
So why couldn’t those people in the Twin Towers stick around for just a little more meaningfulness in their lives? Thich could have taken the easy way out but he toughed it out in true badass style. How shameful that those people disgraced their country and their loved ones by buckling at the knees just when things got tough. Enough, you see the point. Thich Quang Duc is just a different kind of being than we are and I have no problem admitting that. But he also killed himself for an idea. So this brings up the point about compassion. We are not all made the same and if we push things too far, we all have to live up to the examples set by Buddhist monks and most of us are just unable to. And to tell you the truth, I don’t want to be like that. I’ve seen that path and still I have instead chosen the path of desire. I was always suspicious of that mode of life because I could not comprehend how a person could be like that and still feel all of the things that make my heart fly. I have been Buddha a few times in my life so I know what he is like, but I never tried to move toward being a Buddha permanently. As Nietzsche says, “‘I do not like it.’ –Why? - ‘I am not up to it.’ –Has anyone ever answered that way?” So I won’t lie to myself, maybe nothing is harder than being a man like Thich Quang Duc and I don’t know if I could have matched him even with years of training. But truly I don’t know what to say about such people other than that I’ve had glimpses into their worlds but still cannot understand them. I’d personally rather ride the roller coaster of human emotion and experience than be a statue, but the consequence of that is when everything goes wrong and my experience of life is abysmally impoverished, I choose to die. This is perfectly in order.
Anyhow, the example of burning to death without reacting represents an absolute extreme of human possibility. Living as a paraplegic does not and even though the suicide rate is high in paraplegics, all sorts of everyday people live with such injuries. We are talking about attitudes toward suicide so here is a quote in answer to the question of whether suicide is a choice: “No. Choice implies that a suicidal person can reasonably look at alternatives and select among them. If they could rationally choose, it would not be suicide. Suicide happens when all other alternatives are exhausted- when no other choices are seen.” Stupid people saying stupid things, all around me, all the time! Help! I see all sorts of choices, just none that I want to take. A well-known spinal cord researcher told me “Paraplegia is not a reason for suicide.” and went on to say that there had to be something out of order with me psychologically if I was suicidal. Both of these people are saying the same thing, in essence. The correct or rational choice is to live, and not agreeing is simply error or blindness. But this fixes the game against me, don’t you think? Case closed, as far as they are concerned. But once again some might believe this with respect to paraplegia, but nobody believes it generally. The first view threatens us with the Twin Towers example as well. You might object there and say “Those people were going to die either way.” My response is: We are all going to die either way. Then you will point out that they had very little time to live anyway and then I’ll just ask you to imagine those people were going to burn alive, between meals and bathroom breaks, for thirty years and then die. None of that gets around the point that nobody believes suicide is always unwarranted.
Since I just brushed up against it, I will backtrack for a moment and say something with absolute clarity because I believe there is a fundamental error in people’s minds that needs to be done away with. I am choosing my words very carefully here so you can be sure of precisely what I mean: a person’s desire to end his life, standing alone, does not indicate in even the slightest way that there is something “wrong” with him. I’ll say it a thousand times. I’ll scream it until you listen. There is nothing psychologically wrong with me! World, get it through your fucking head! Because if you go wrong on this point, you go wrong at the very start and have no hope of ever commanding a clear view of my situation or the situations of others like me. I know all about the lives of paraplegics. I know what’s possible. Other people can do whatever they want. I’d rather die than be a paraplegic and this does not indicate even the most infinitesimal defect in me.
Some catholic said this: “To destroy a thing is to dispose of it as an absolute master and to act as one having full and independent dominion over it; but man does not possess this full and independent dominion over his life.” You want to bet, freaks? You crazy people, sitting in your stuffy churches with your souls twisting into the most convoluted knots of psychological self-mutilation. Lacerating yourselves internally with exquisitely methodical subtlety in devotion to an insubstantial, amorphous idea that corresponds to nothing in reality. Absolute madness! Of course I have “full and independent dominion” over my life. You think I will have to answer to someone when I die? Let your God answer to me, slaves! Yes of course I am indulging in some big talk but really it’s just a game since I’m puffing my chest out at the air. These kinds of statements really don’t concern me in the slightest. There is no God and my life is my own and that’s the end of the story.
But I was wanting to say more about Frankl’s book. He says “In psychiatry there is a certain condition known as ‘delusion of reprieve’. The condemned man, immediately before his execution, gets the illusion that he might be reprieved at the very last minute.” This struck me because it captures something I have felt many times. It’s a sort of disbelief concerning my condition. At certain moments my mind might become occupied with something or other and then in a flash I am aware of my condition and simultaneously in a state of utter incredulity concerning it, as if it simply cannot be real. “I really am just two arms and a head attached to a corpse, forever? I will never be who I was again, ever? This is my life forever??” I believe I understand precisely what those prisoners experienced because I have felt it over and over. “They are going to kill me? I’m going to die now? Die??” The facts of the situation are so unthinkable that they just don’t register and therefore simply cannot be true. This might have a lot to do with what I see going on with many others in my condition whose minds bear the marks of intense trauma and delusion. This sense of disbelief, of the impossibility of the situation, becomes protracted, stretched out, so that it causes their minds to become almost catatonically fixated on certain ideas without which they would come completely apart psychologically. La Rochefoucauld says we can stare directly at neither death nor the sun. It seems that few can stare directly at paraplegia. They are not disabled. They are still the same. They can do anything.
I’ll tell you where I think Frankl goes soft. First, on the point of the overall purpose and meaning of life he seems to have some kind of mystical insight or faith that they are overarching and somehow circumscribe life from the outside. I don’t agree with him here, though I am also tempted by those kinds of thoughts from time to time because of having had a few mystical experiences where everything was infinitely perfect, I was one with the universe, and all that sort of thing. I do not minimize these experiences but also don’t know at all what to make of them. In general, I think any purpose must be found in life itself, and the overwhelming probability, bordering on absolute certainty, is that we simply cease to exist when we die. I don’t like the idea much, especially as a young man, but always expected I’d be fine with it when I got older. As one of my professors, an old man, once said to me when I asked what he expected to happen when he died, “Well I’m hoping for annihilation.” So I don’t have that crutch like Frankl. In my mind, leaving someone to suffer an extra month, against their will, with terminal cancer is insane.
A few other points where I think Frankl gives way to sentiment. “In the past, nothing is irretrievably lost, but rather, on the contrary, everything is irrevocably stored and treasured.” And, “So too does the value of each and every person stay with him or her, and it does so because it is based on the values that he or she has realized in the past, and is not contingent on the usefulness that he or she may or may not retain in the present.” The past is nice to think about, but gives me little comfort. Yes, there were magnificent things that I loved about my personality that are gone forever- so what? I’m not interested in going over ancient history in my head. That is fine for old men looking back in the twilights of their lives, but not for me. I have been cut down in my prime and none of that cute, sentimental shit does me the slightest bit of good.
Still, I like Frankl a lot, don’t get me wrong. Even as an honest atheist I can benefit from what he says, I just can’t go all the way with him. There are honest atheists and dishonest atheists, by the way. Perhaps my life can have meaning but that sounds odd to me and I think part of the a question is “Meaning for whom?” Or rather, I can do a lot for others but my life being packed to the top with meaning doesn’t matter much to me if I’m miserable and can never live the way I want. The two just seem incompatible. One goes with the other. Even if I am in great pain, I can still be deeply satisfied. Is pain the problem or is it not? I’d put it this way- it’s the pain of not being able to give the kind of meaning I want to my life. The lack of meaning is logically prior, and causes the pain. Not the other way around.
“Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom.” Now Frankl is getting closer. I do not identify my “very self” with my “inner freedom”, however. That is an incomplete picture of what a person is, in my view. “Inside” I run and play, have fun and make love. But in saying this, Frankl is implying something I agree with in that one’s “very self” is a thing tremendously important to hang on to, and part of my very self has been taken away from me. More, “Former prisoners, when writing or relating their experiences, agree that the most depressing influence of all was that a prisoner could not know how long his term of imprisonment would be.” Frankl called this a “provisional existence” and said that a man who could not see the end of it was not able to aim at an ultimate goal in life. I am different in that I have a pretty good idea how long my imprisonment will last- forever. So for those who like to say this one: “Suicide is a permanent solution to a temporary problem.” I reply that suicide in my case is a permanent solution to a permanent problem.
Another quote I like addresses the question of whether suicide is ever reasonable. It’s Cesare Pavese: “No one ever lacks a good reason for suicide.” If you have read this far and it’s not clear that I possess reason, I can never convince you. My point here is that the question of reason really has little or nothing to do with things. There are a few senses of “reasonable” and one often used means something like “in accordance with my own personal ideas about how a person should act”. I’m not too interested in this sense of the word except where my personal ideas are involved. George Carlin once said, in an effort to construct a sentence that had never been uttered before, “After I shove this red hot poker up my ass I’m going to chop my dick off.” There is absolutely nothing unreasonable about a person doing that. “My goldfish died, therefore I’m going to kill myself.” Not unreasonable. There is no problem with my reasoning powers. They are probably far better than yours. So if I say, “Paraplegia prevents me running. A life without running is not worth living. Therefore, my life is not worth living.” you might not agree with one of my premises, but there is no question of whether I’m being reasonable. Put another way, what I value is reasonable as long as it involves no contradictions and that’s the end of things.
Is choosing to live always a virtue? That is, does every person who chooses life in a given situation possess some quality that another lacks who chooses death? I’ve thought many times that if I were sentenced to life in prison, I would have to kill myself. There is just no way I would have been able to live in a cage for the rest of my life. Fuck that! But there are a lot of people in prison for life with no chance of parole. Can one reasonably say that every person imprisoned for life, by the very fact of continuing to exist in those conditions, has some virtue missing in any other who would rather die? I read that suicide is the leading cause of death in complete paraplegics. Are they all “wrong”? Would you hold that an unwillingness to live in prison forever could betray some sort of deep-seated character flaw? Similarly, what about the “disabled community”? The 70% who are unemployed? Maybe these are the people who have that special something I lack and I should go to them for some sage guidance. Or the ones who lie in bed all day, watch TV, and collect disability from the government? The heads on corpses? “But you don’t have to be like that!” That’s not the point. I’m just looking for that elusive quality, or attribute, or virtue, or whatever you want to call it, that is common to all of those who live in my condition. The strength, determination, grit, or what you will. No, I’ll say it again. Mere existence means nothing at all apart from its containing something to justify it and make it worthwhile. Prison is a horrible and nightmarish fate and I’d be damned if I would spend my life there. I would sooner die and the rest of the prisoners there would be more than welcome to sit around in their cells tooting their own horns about how much stronger and braver they were than me. They could discuss it over their white-bread, one-slice-of-baloney sandwiches. Mayo if they are lucky. No, merely choosing to live as a paraplegic or a lifelong prisoner is not in itself a virtue.
Legalizing assisted suicide is clearly an enlightened step but there are a number of obstacles to it. Probably the most consequential are religious types of objections like the one I mentioned above. People think that God is the only one who can have that kind of authority over a person’s life, to the exclusion of even the person in question. This is of course nuts. Let’s look at the clearest cases, involving people that are terminally ill. Bear in mind that killing a person with the kinds of drugs we have now is an extremely simple matter. Death would be something like the experience of being put under general anesthesia. The doctor injects the drug into your IV and then asks you something like “Read any good books lately?” Then before you can reply it’s lights out and the next thing you know you are waking up hours later. The only difference with assisted suicide is that you don’t wake up. But this is illegal just about everywhere in the world right now except Sweden as far as I know. So what do they do instead?
It’s strange the way people lie to themselves on this issue where responsibility is concerned. That is, the doctors (and I’m not blaming the doctors, for it is of course our politicians and the judiciary who are mostly to blame) withhold something very simple from the patients, a few cubic centimeters of a drug, in order that they won’t be liable, or morally responsible, or what have you, in the deaths of the patients. But what they will allow is the removal of life support or food and water. That is, the patient has the right to refuse treatment, but not to get help in dying. So what is the result? We end up with people dying drawn out, agonizing deaths because they are so desperate to end their suffering that they have no other choice. So the doctors stand by while these people starve to death or die of dehydration. While they shrivel up and dry out. While their lips crack and their eyes sink over the course of weeks or more. Can one imagine anything more macabre or insane? When will mankind realize that it is only we who determine what is right and wrong? That nothing and nobody is looking over our shoulders from on high? We can execute other human beings and take their lives away forcefully and violently for the good of society and in the interest of imposing punishment on them, but we cannot spare others, guilty of nothing but approaching the ends of their lives, the pain of enduring wasting, lingering, painful deaths that tie the souls of their families and loved ones in knots? Not to mention that their life-savings are often depleted and go to the hospitals and insurance companies instead of to their adored and beloved families. Look this one in the face people. Am I wrong to suspect that those with financial interests in these sorts of things might be the first to send out lobbyists to oppose legalizing assisted suicide? My grandma was forced to sell her car before she died to pay for medical expenses. They raped her as she lay dying. No, it is all absolute, unequivocal madness.
Something you need to understand is that people who are ready to die are beyond helping themselves. Part of the problem, however, is that those who are generally in positions to lobby for and change the laws are not in immediate danger of being harmed by them, or at least do not think they are. And let’s be honest, it’s a little morbid. The idea of a young, ambitious person who is full of life passionately championing the cause of assisted suicide does not make much sense. Young people would prefer not to think about such things, but what everyone does not see is that those old people are you. You are them, it’s just a matter of time. It’s coming and if you don’t do something to protect yourselves from that horrible fate, it could very well be yours. Once you are at a point where you need help dying, you are probably no longer prepared to single-handedly launch a years-long political crusade to legalize assisted suicide. Old men diagnosed with pancreatic cancer and given a month to live don’t usually start letter-writing campaigns to their local congressmen. That time has passed for them. But when they need help the most, when they are finally face-to-face with the reality of dying horrible painful deaths, only then do they realize what has been waiting for them all along.
There is an organization of crazies called “Not Dead Yet” who actively and vocally oppose assisted suicide for disabled people. It is headed by a woman named Diane Coleman, who is a lifer. That is, her disability was congenital and since she has used a motorized wheelchair since she was a child I’m guessing she doesn’t have full arm function. I don’t know. Her organization’s line is “Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled as terminal and those that are not.” I recently read a journal article about a man whose spinal cord was injured right at the foramen magnum, which is the big hole in your skull where your spinal cord comes out. He was paralyzed so high up that he couldn’t even feel his whole head. The author pointed out that when the man was in the emergency room he was asked if he wanted to live and responded that he did. Then some time later, after it was clear that there was no hope of him recovering, he decided he wanted to die but by then the doctors worried that he was “depressed” and not thinking straight so there were ethical problems with removing his life support. He didn’t realize just then how good he had it, how “rich and rewarding” his life could be. Let me put my own interpretation to this one. The guy is going along, living life, when all of a sudden he is experiencing something fantastically bizarre and surreal with a bunch of doctors leaning over him asking if he wants to live. In that frantic, terrified, and confused state of course he says he does. But then he has some time to come to his senses and think, realizes he is trapped inside of a nightmare with no hope of escape, and quite understandably wants out. Do you see the difference in the two views? Which do you lean toward, enlightened reader?
More along the same lines: “The Oregon Death With Dignity Act authorizes and empowers physicians to discriminate in their response to a patient’s expression of the wish to die based on the patient’s disability. This should be viewed as a violation of the Americans with Disabilities Act, which prohibits such discrimination.” Discrimination? Why? They are being given MORE rights. They are given a freedom that others don’t get. They are not being stopped from doing anything. They are not being deprived of anything. All they are being deprived of, perhaps, is other people imposing values on them. It’s only the perversely ridiculous egos of people like Coleman that prevent them from accepting that perfectly reasonable and rational people could view severely disabled lives as being completely unacceptable. Yes, what’s implicit in assisting the disabled to commit suicide is that their lives are less valuable. And once again, OF COURSE they are! Everybody knows this! Discrimination is used here in a pejorative sense, but as I see it the doctors are only discriminating in the sense of differentiation. If you are brought into the emergency room with your leg cut off, they will give you morphine. If you just mosey in and ask for some, they won’t. Do we call this discrimination against the legless? No, because there is a need in the first case that’s not there in the second. And head quadriplegics sometimes need to be put down.
Coleman claims that twenty-six disability groups supported Terri Schiavo being kept alive, and that fifty-five bioethicists advocated the removal of her feeding tubes and water. Do we see a tension here? This is just crazed, foaming-at-the-mouth disabled people who are out of their minds. They don’t have a leg to stand on! Terri Schiavo was not disabled. Terry Schiavo was not, period! “Cognitive abilities must not be allowed to determine personhood under the laws of the United States.” Coleman says this. Oh really? Does everyone see that this is insane? Go to the store and buy a steak. Now cut the female end off of an extension cord, strip the ends of the wires, and plug it in. Now shock the steak with the stripped ends. That’s Terry Schiavo. One source said “An EEG showed no measurable brain activity.” The CT scan of her brain showed that a significant part of it was “liquid”. She was “minimally conscious” and in a “persistent vegetative state” with no real hope of ever recovering. She needed to die. Human beings should not live like that.
But Coleman mentions the “prevalent prejudice that no one would want to live like Terri Schiavo.” This is like the “prevalent prejudice” that no one would want to live like a doorknob. What is it even like to be a doorknob? Nothing. What is it like to be Terri Schiavo? Certainly very little. But Coleman says the “autopsy report was not inconsistent with a finding that she was in a minimally conscious state”. Nice try Coleman, you freak. What “finding”? And “not inconsistent with”? Smells like bullshit! The report was also “not inconsistent with” me being Napoleon.
The people at Not Dead Yet take issue with the idea of providing assisted suicide to the severely disabled and not to healthy, able-bodied people, by calling it a “deadly double standard”. You’re goddamn right it’s a double standard you fucking lunatics! Why is there a double standard? Because on the one hand we’re talking about healthy human beings and on the other about nightmarishly, gruesomely, horribly disabled human beings. Do you see, readers, what these people want to do to you? They want to force you to live your lives as heads attached to corpses. They don’t want you to have any choice in the matter. Here’s a quote by C.S. Lewis:
Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end, for they do so with the approval of their consciences.
Don’t these people not frighten you? Can you imagine being locked in a torture chamber for the next thirty years of your life? That is what those “Not Dead Yet” people want to do to you! Don’t say there aren’t horribly twisted people out there and just because a person has a J.D. and wears a suit does not mean she is not a monster. They are out there, waiting to lay their hands on you! They want to bring lawsuits, stage protests, do anything they can to keep you imprisoned in a dead body if you are ever so horribly unlucky as to end up there. Beware! And let’s not pretend that it’s a simple matter for a head to commit suicide. Because that’s part of their line, they are not against suicide but against assisted suicide. I imagine a head quadriplegic could ask for some gum and then huff it down his windpipes, but otherwise what is there? Drive their sip-and-puff wheelchairs in front of trains or trucks and risk the lives of others? Ask to be taken to lakes so they can drive off of docks? So about the best they can hope for is either suffocating/drowning or dying traumatically and endangering others. If these people want to die, they need help!
Do you see the point of Lewis’ quote? These people are the “moral busybodies” he was talking about, and they are all the more frightening because they will inflict pain on you for your own good. They will purify you in flames in order to cleanse your souls. No friends, don’t be afraid of the rapists, muggers, and robbers. Don’t let them fill you with dread and disturb your sleep for all they want is to have their ways with you and then leave you alone. You should be more afraid of the kinds of the people at “Not Dead Yet”. Heads on corpses that want to force you, against your will, to live like them for years, and years, and years. They are the ones that should be keeping you awake at night, wide-eyed and terrified, dear readers.
Something that figures into the reasoning of people like this is how they view things like autonomy, dignity, independence, and so on. What you will find if you ever take the time to learn about it is that it is precisely the kinds of things that define these words for us that they want to claim have nothing to do with them. So you will hear things like, as Coleman says, “Needing help in dressing, bathing and other intimate daily tasks does not rob a person of autonomy and dignity.” I like “and other intimate daily tasks”. Why doesn’t she just say “fingering up the ass to dig out shit, draining piss, and taking the bloodied tampons out of my vagina and sticking new ones in”? So if you think these things have anything to do with dignity or autonomy, you are wrong. Head quadriplegics are essentially like baby birds where their basic needs are concerned. They peep and peep until someone puts food in their mouths, or digs the shit out of their asses, or what have you. I came up with a name for the “institutions” where they keep such people: head gardens. Why did I choose that name? Because that’s what they are.
An objection made to assisted suicide is that it might put some sort of pressure on the severely disabled to end their lives. That is, once it was legal it would be expected in certain cases. The general idea is that legalizing assisted suicide would be an implicit endorsement of the idea that disabled people’s lives are less valuable and therefore less capable of justifying the expenditure of resources to care for them. But everyone believes this already anyway. Severely disabled people are, on the whole, less valuable to themselves and less valuable to others. If this makes you mad, you should probably try to be a little more honest with yourself. It’s true that there are rare exceptions, but not that many. I’m not trying to say that human beings use their resources with optimal efficiency, or even acceptable efficiency in most cases, but the truth is that only a luxuriously opulent society has resources available to take care of severely disabled people that need constant care. So we are talking about the idea that the severely disabled could be pressured to end their lives if it were legal. I’d say this is something like what’s called “peer pressure”. The way parents usually answer this objection is by saying “If Billy jumped off of a bridge, would you do it too?” Yes, it’s a little simplistic, but the point is that just because the option was there would not mean anyone would be forced to take it, and if they felt pressure perhaps they should feel it. People who are unable to care for themselves can go on and on talking about how they are not burdens, and how they are entitled to the enormous resources that are dedicated to them, but that’s their luxury, isn’t it?
What if the staff members at one of those head gardens all got together one day and said “You people are very fond of talking about your rights. We hear about them day in and day out. Well please don’t let us stop you from exercising them.” Then they all just walked out. One could reasonably say to certain disabled people, “It is not that it is your choice or your right to live, but rather that we choose to keep you alive.” That is to say, we don’t generally think of it as our right to compel society to give us more than we can give in return, once we are adults. It’s true that some disabled people are perhaps capable of breaking even, so to speak, but how many heads do you think are productive enough to offset the burden of giving them twenty-four hour care? I’ll answer for you- it’s not that many. Almost none, I’d go so far as to say. That’s not the point, some will object. So what if they take more than others? They are human beings that need help. Yes, that’s lovely. Sorry for being the monster here, but I don’t think it is proper for healthy human beings to be working every day to financially support head gardens. It is no way for those people (the heads) to live and it is no way for society to be allocating its resources. People who object to this are the same kinds that are unwilling to concede that we sometimes need to quantify the value of human life in terms of money. The kind of people who might say “If we can save just one life it’s worth it to spend a billion dollars of taxpayer money.” I’ll leave it to the reader to figure out why that kind of thinking doesn’t even get off the ground.
And let’s be honest here, more or less everybody thinks it’s clear as day that head quadriplegics need to die. Conduct a survey! What about you reader, would you rather die or be a head attached to a corpse for the next twenty-five years? OF COURSE you would rather die. Okay, I won’t be so sure of myself. I’ll just say that 99% of you would rather die. Most of the people I’ve talked to about it are pretty clear about their feelings on this one. “Shoot them.” One neurologist I know said that an I have to agree. So it’s always fun when, in an effort to encourage me, people point out people like Christopher Reeve and Stephen Hawking to me when I know damn well most of them would rather die than wake up tomorrow in either one of their conditions. Thank you!
Let me digress here to address various things I’ve heard said about suicide. I actually feel like this might be somewhat amusing, so forgive me if I address such a morbid subject with some levity. It’s just that many of the things people say are just so silly. It has many times been pointed out to me that those who have lived through suicidal feelings are often glad that they didn’t kill themselves. I’ll tell you a story. We have all heard accounts of dolphins protecting humans and guiding them back to land. Dolphins are sentient beings with compassion and sympathy for the suffering and distress of other sentient beings! What beautiful sentiments contemplating such a thing can inspire! Not so fast. I was once talking to my favorite anthropology professor about the large brains of dolphins and asked him how he would account for this phenomenon. Why the abundance of these wonderful stories, professor? He said “Because you don’t hear from the ones they push out to sea.” So the analogy is that we can’t exactly ask people who have committed suicide whether they are happy about the decision. “No, I’ll stay dead thank you.” I’ve heard people say they wish they had killed themselves years ago, when they might have had the nerve. Those people our good therapists do not tell us about.
Then there is probably my favorite: “I’d never take the easy way out.” This one needs some unpacking I think. What does it mean? Not just that being easier is always undesirable, because that’s absurd. I’ll translate what I think this usually means when people say it: “I am a tough guy.” Remember my definition above? Obviously something being difficult does not make it the obvious choice. I’d encourage anyone who disagreed to cut off their hands. But I don’t think this person is saying “Living is the less desirable choice, but I just want to make myself suffer.” No, really the first translation is the right one, because if life is worth living, it’s worth living, and there is then no question of suicide, so the statement is just gratuitous. Another possibility is that though they would prefer to die, they are staying alive and suffering in the interest of some great cause. Well if that’s true I will certainly not object. But the other thing I’d ask about suicide being easy is, “Is it?” This is the precisely the kind of thing I had in mind when I mentioned above how cavalier people can be concerning the subject. These people act as if it would be a simple matter to nonchalantly pick up a shotgun and blast their faces off. I have to wonder what makes them so sure. Honest people generally have to admit that they have no idea how they would react in certain kinds of situations they have never faced. What would you do if you and your buddies were suddenly on a field with a horde of battleaxe-wielding, 250-pound Icelandic berserker Vikings running at you, wanting to kill you, burn your house, and rape your wife and daughters? Who knows, but I’m pretty sure all of our “easy way out” friends would handle it without breaking a sweat because of how nonchalantly they bandy about matters of life and death.
There are any number of people in this world that are far harder than me in some ways. I know this. But I also know that I generally have far more fortitude than the vast majority of human beings around me. Get serious! Half of them don’t even have the “courage” or “strength” necessary to brave the pain of keeping their pudgy hands off of a Big Mac for a day. So when I think about all of this “easy way out” stuff it seems to me the old trick of people making virtues of what they are and must be. What is more common than that? People who have no ability to be assertive call themselves “patient” and those who let themselves get walked on say they are “too nice”. That kind of thing. So people just snub their noses at the act of suicide because they are so tough, and then wrap themselves in the noblest garments because of their “choice” to live. They live for their families, or because they are not quitters, or because suicide is a sin, or what have you. They sure are hardasses to face life so bravely, but not hard enough, it seems, to get their unemployment rate below 70%. I’m sorry readers, but I just can’t help pointing that out again. Braving death is easy but getting their asses out to work everyday is evidently a little too much to ask, for most of them anyhow.
Many condemn those who commit suicide because it hurts those left behind. I have thought a great deal about this though some will infer, and already have, that I didn’t think about it at all. A quote I read is: “As anyone who has been close to some that has committed suicide knows, there is no other pain like that felt after the incident.” I am very sorry that people will be hurt by my death. It’s natural to be upset when a loved one dies, but any stigma or lingering psychological trauma that occurs is the fault of society and the often erroneous views people take of suicide, not of the person who commits the act. If we had a more realistic and honest way of regarding and dealing with the fact of death, there would be far less of a problem. I realize suicide is unique in a certain sense because it raises all sorts of profound questions about the person’s state of mind, but mine is not the usual situation. I am not mentally ill and it was not a lack of support from others or any other typical thing that was the critical factor. It is far too easy to apply broad generalizations to my case. Recall, once again, that I am simply two-arms-and-a-head attached to a corpse. Suicide is sad for a person like me who suffered a great deal and felt compelled to make that decision in what was previously the prime of his life, but it’s not sad for an old person who is sick. The fact is that people die, and everyone is going to die, and that’s all there is to it. And I have to assure all of my friends and loved ones that if they knew the torture I endure every single day, they might feel sorrow over my death but they would also feel a great deal of relief. As a father said in “The Sea Inside”, “There is only one thing worse than having a child die on you . . . for him to want to die.” And I want to every day. I am in horrible pain every day.
What exactly is suicide anyhow? I mentioned above that we use the word in a way that does not convey terribly much. That is, does the fact that I’ve ended my life by choice put me in some kind of category that tells you something informative. Lichtenberg said: “To make yourself something less that you can be. That too is a form of suicide.” I tried to be the best I could before I was hurt but now the best I can be is not good enough for me. No paraplegic life is good enough for me. I am no suicide. I was a highly disciplined, driven, ambitious, healthy person who was in love with his life. Anyone who thinks they can categorize me or understand something meaningful about me because I have ended it could not possibly be more wrong. Suicide as a generally healthy, able-bodied person and suicide as a paraplegic are two different acts. Suicide for an atheist and a theist, incidentally, are also two different acts, not in their practical consequences but in what those who act see themselves as doing. In destroying myself I am destroying something far less than I used to be. I am destroying a mutilated and grievously diminished human being. My life was over and ruined before I ended it. The world is full of drug addicts, alcoholics, smokers, anorexics, and obese, indolent, slovenly people. Take a walk down the street one day and you will see a hundred people who are more suicidal than I will ever be. Every time they put needles in their arms, they commit suicide. Every time they light up cigarettes, they commit suicide.
Something we often hear is that talk about suicide is a “cry for help”. It’s really astonishing how insulting the world can be toward those in desperate situations. What pleasure some people derive from the sight of one who is in pain. How they jump at the chance to apply their “compassion” to one they see as being below themselves. Yes, I suppose in talking about suicide I wish on some level for help, but what I want is help and support in facing my death, not to prolong my life. Do you see how tremendously belittling and insulting that kind of talk is? I’m just confused, poor baby. I’m scared and have to be told what I really mean when I try to talk about my feelings. I just don’t understand that I really want to stay alive and just can’t say it. This is one of the things that so taxes my patience all the time is that the world will show me absolutely no respect now that I am in this horrible situation and want to die. “Help” is abundantly available to me but only insofar as whatever I am given is in line with someone else’s agenda, whether it’s the government, a psychologist, or what have you. But once my true, final, carefully considered decision is to end my life and I need support and comfort, I am left completely alone. I am abandoned, pushed out into the cold.
This is the government’s fault, along with crazies like those at Not Dead Yet. They are all cowards and fucking lunatics. I am cut off from my loved ones, left to die alone. No honor, no respect, just icy ostracism. Our laws hold severe and horrible punishment over the heads of anyone who would help me. And what would happen if I tried to come right out and announce my death? I would be taken forcefully, against my will, and imprisoned in a hospital or institution. The thought of that is absolutely horrible to me. It would be like being raped. So since I have that possibility to contend with I end up having to watch my every step, like a fugitive, for fear of having the “moral busybodies” lay their horrible hands on me and take away my freedom. The thought is a nightmare. I can imagine a nobler world, where I was in the company of warriors. Brave men who had the stomachs to see that life in my state is a disgrace. Do you think the samurai would stand by and let their brother live like this? I would have only to ask and my best friend would chop my head off. As I left this world they would honor my life and everything I tried to accomplish. We hear all the time about compassion but compassion is not just fawning sentimentality. It’s not just giving a dollar to a beggar. True compassion takes some stomach. How much do you have in the way of guts to be truly compassionate? Compassion is shooting your friend in the head to spare him a grisly, torturous, painful death. Compassion is killing your son when he breaks his neck and becomes a vent-dependent head quadriplegic. There is a girl I love so much my heart feels as if it would burst for her. I absolutely adore her. But I swear that if she became a paraplegic and asked me, I would kill her. I swear I would do it to save her the horrible experience I have gone through. The weak cannot be truly compassionate. Something else that would be compassionate, people of the world, would be to not make me die alone. People get support in going through hard decisions all the time. But I get nothing. Maybe it’s only because I have been abandoned, but as I get closer to death I wonder if I really need help at all. I don’t want to feel that way. I want support, but as time goes by I am feeling a tendency to want to spurn it. But I think this is only because I have no choice.
It is silliness to live when to live is torment; and then have we a
prescription to die when death is our physician. -Othello
It has been suggested that I take medication so I can feel better about my life. I spoke to a psychiatrist in order to get cleared for a lighter load in law school and he pointed out how my feelings of torment came from some chemical in my brain and if I took “Wellbutrin” (the names are so cute) those chemicals would change. I explained my feelings about this kind of thing when I wrote about depression above. In philosophy we have a term we apply to things like this, we call them “trivially true”. It is trivially true that my painful feelings are the result of chemicals in my brain, because everything I feel is the result of chemicals in my brain. There is no doubt that if I snorted a few lines of cocaine right now I’d be feeling fantastic in just a few minutes. So why don’t fathers give cocaine to their depressed fourteen-year-old daughters? Maybe there is a difference but it is only one of degree.
I’ve figured out how to express my objection to drugging myself into submission to the cage I live in. Consider the following question. Who would you rather be, Julius Caesar or Alexander the Great? In a certain sense this question is intelligible and you can start thinking about the lives of the two men and imagining yourself in their positions. But in another sense the question is completely unintelligible. You cannot be Julius Caesar because you are not Julius Caesar. Only Julius Caesar can be Julius Caesar. That is, to fully be Julius Caesar would leave no room for you in the picture. It’s similar when people tell me that by taking drugs I could be happy living in a mutilated, grotesque paraplegic body. I am not happy living like this. Perhaps there is some hypothetical person who could be happy in my body but it is not me. That is, being happy in this body and with this life is so fundamentally antithetical to who I am that I would have to be a completely different person. My body is already mutilated- I will not also mutilate my soul with drugs. I would rather die than drug my spirit to where it was content in this fucking cage. You might wonder what I mean by “soul” since I already objected to that idea in the chapter, “Self”. The answer is that it’s just the deepest part of me. It is my dreams, hopes, aspirations, and the place I hold the immense love I have for the wonderful things I adore with all my heart. If I stop feeling pain over being separated from those things, it means they have died inside of me and if those things die, I die. My dreams are now a pie in the sky. In a sense my suicide is an affirmation of life because through the act I renounce an inferior life and affirm the life I loved, which is now impossible for me. Why is it not possible that my love of life compels me to death? Montaigne said, “My trade and my art is living.” So was mine, but this is not life. Here is the profound truth I feel so alone with and nobody seems to want to understand: it’s not what’s wrong with me that makes me need to die, it’s what’s right with me. It’s everything I love with the deepest and most essential parts of myself. I can be happy as a paraplegic no more than I can be Julius Caesar.
Hamlet says that suicide “puzzles the will”. I don’t claim to be sure what Shakespeare meant by this, but I will tell you what it means to me. Willing is connected with action and action is directed at an end, goal, or purpose. But suicide is only directed at nothingness, so truly it has no goal at all. We almost cannot make sense of it as an act so none of the usual concepts apply. I only commit suicide because I recognize that I must cease to exist someday and since I now bitterly despise my existence I choose to end it now. So I find myself thinking of reasons for annihilating myself but in a sense there is no reason. I simply cannot live like this. Maybe I feel pride in my unwillingness to be degraded and humiliated for the rest of my life but really, when I am dead, there is no longer any pride, courage, or anything. It’s just nothing. Pure nothingness. But it’s not even pure because purity is a property. Nothing has no properties. It is not even an “it”. Nothing can be said about nothing. We cannot refer to it. We cannot “mean” it. We cannot imagine it. It’s just . . .
Even though I get all worked up over many things that people say, I don’t really think anyone is going to view me as a coward because I killed myself. This goes along with the general dishonesty that accompanies so much of what is said about paraplegia and other horrible disabilities. Praise is heaped on those who live with disabilities like mine but the general feeling is “at least we will give them that”. Part of the problem, though, is that most have very strong psychological barriers that prevent them from being able to accept my decision. They all feel they need to be trying to convince me to live, but in doing so deny me what I long for which is validation and acceptance of my feelings. “I understand how you feel, but . . .” is the way it generally goes. What I need is “I understand how you feel and I’m going to see you through it and be there for you.” As I’ve said almost everyone would rather die than become a head quadriplegic and if they are being honest many will admit that they would rather die than be like me. I won’t guess at the percentage but it’s a lot. Many disabled would assure you it’s not as bad as you think, but if you ask me it’s far, far worse than you ever imagined. How many able-bodied people out there had a clear understanding of all the things I explained, for instance, in the first chapter? More or less none.
Don’t mistake this to mean that I am in some kind of denial about suicide being a choice, but I really feel it no longer is. That is, living like this just is not an option for me so in a way the process has taken on a life of its own. I simply must keep on my path toward death. I am completely surprised by the situation. I think “How strange that I have to kill myself now. I never imagined it.” It’s something like when a relationship goes bad. You realize it’s just not going to work, and there’s only one thing to do. If you have a lunatic girlfriend that busts your balls and annoys the hell out of you all the time, staying with her really isn’t much of a choice. That’s the way it is for me now. I’ve looked at all of the other options and this is the only one for me. I don’t like it, but I like all the other choices even less.
What I see underlying society’s general resistance to embracing assisted suicide is a kind of denial about death itself. Old age and death are coming to all of you. Those who say there is no need for assisted suicide are callous and thoughtless in the extreme. Most people have no idea because they have never had any reason to think about it, but there are tremendous practical difficulties associated with committing suicide. How will I do it without leaving a mess? Will a loved one find my disgusting, two-week-old corpse? How will I be sure all of my affairs are in order? I pointed out how those who are on the point of death no longer have the will or power to help themselves but this is often in large part because they are denied that power by our laws. I am the voice of the voiceless. Have you ever suspected that people in certain situations see things you don’t? That the man who has been on a bloody battlefield and seen young men screaming with their guts hanging out has insights about life that you do not? I am about to die and certain things have become very clear to me. One is just that the way we deal with death is nothing short of absolutely insane and terrifying.
Here is an ethical problem to throw into the mix. I took very good care of myself when I was able-bodied. Clean diet, regular exercise, no tobacco, very light drinking. I am still a young man so my organs are probably in excellent shape. There is a shortage of donated organs and many people who want badly to live need them. I do not want to live anymore but have perfectly useful and healthy organs. You can see where this is going. Why, when my death could save lives, and presumably my life is my own, would the government stand in the way of me making a gift of my organs to save others? It’s not a complex question. Maybe my heart could save one young person and my kidneys another. It’s ideal because the donees could be right in the next room, all compatibility tests out of the way, ready to get their new organs. Then I could have a comfortable death with the support and comfort of those I love, and at the same time save perhaps two or more lives. This is a very serious question and it seems to me that it’s hard to argue against allowing such things without employing principles one has to fly into the clouds to pull out.
It seems somehow fitting for me, as a philosopher, to have to die dealing with something nobody seems to want to look at. Imagine a man who was the finest human being possible. Maybe he was independently rich but decided to spent fifty years working for charity, feeding and caring for orphaned children. He held them in his arms and loved them. But then he got sick and was on his death bed, all he wanted was to die at the time he chose. He knew all that was left for him was four months of absolute agony. Four months of being drugged up, barely conscious, confused, with tubes and IV’s sticking out of him as his body grew emaciated, as his cheeks sunk in and his eyes grew dull. A heartbreak to his family, with all of his dignity taken away. His heart ached to be master of the situation. He longed with everything inside of him to be able to die well, on his own terms, and simply could not believe those around him were going to deny him that. He desperately wanted to others that it was possible to die well, without fear, and thereby to assure them that when their time came perhaps they could assert their dignity, as Nietzsche said, “die proudly when it was no longer possible to live proudly”. But instead he was forced to endure a shameful, lingering, gruesome death. He wanted desperately to ask for the help he so badly desired but knew nobody would give it to him. You cannot imagine the desolation of that kind of situation. And when that man got to that point, he realized that the other human beings around him were simply blind and didn’t realize they had created a fate for him that they were also creating for themselves. Someday you will be on your deathbed and maybe you will remember me. What I say to the world is that if you don’t do something about the way death and assisted suicide are dealt with, you may someday find yourselves in an unimaginably horrible situation with no way out. Someday when you are helpless you may realize that your life is not your own after all and you will see that sometimes being forced to live is the ultimate tyranny and enslavement.
I did not want much from the world in dying. To be able to put my affairs in order without fear of being taken prisoner and treated like I was insane. To say goodbye to those I loved without the same fear. To die a painless death without worrying about leaving behind something gruesome. And to be comforted as I died. When a person has absolutely nothing left and is facing annihilation, all he wants is not to be alone. But maybe you have to be there to truly understand it. I wanted someone to hold my hand, to touch my face, to be with me. The thing I feared most in life was being alone. How empty to exist in this universe and share your feelings and experience with nobody! But that is how you, the world, have left me to die, alone. But what you don’t realize is this: in turning your backs on me, you have turned your backs on yourselves.
The Road to Nowhere
Mistah Clayton- he dead
A penny for the Old Guy
Many of you might wonder what it’s like to march into the desert, toward nothingness. I’ll tell you what it has been like for me- very difficult, painful, and confusing. The ultimate matter is of course committing the act itself. Many different ideas have crossed my mind. Early on I came up with the idea of doing it with helium. One can take a tank of helium, attach it to a hose, breathe it in for a while, and die. I ordered the tank, a regulator, and everything. I chose the method because it was neat, quick, and painless. You do not experience the sensation of suffocating (I think because it’s an excess of CO2 that makes you feel that) but only a kind of dizziness and then you pass out. About a year ago I wrote a note, got things somewhat in order, and prepared myself to attempt it. I had a contracts exam that day and figured people would come looking for me quickly when I didn’t show up, which would prevent me from becoming a bloated, half-rotted corpse with liquefied insides. I left a note just inside my front door that said something like “Sorry for the trouble but I’m in my room, dead. Please call the police.” The plan was to put a plastic bag over my head with the helium hose going into it. Before I went for it I wanted to familiarize myself with the feeling I would get so I would be able to maintain control of myself so I got up on my bed, turned on the helium, let it run continuously into the bag, held the top of the bag slightly open, and breathed it until I almost passed out. I became disoriented and frightened and then just began crying. Why did I cry? I didn’t want to die. Everything was so horrible. I was so sad, so hopeless, so heartbroken. I took the exam the next day and continued school the following semester.
I thought for a time of doing something flagrantly defiant and horrible out of anger at the insanity of our laws and leaders. I imagined getting a double-barreled shotgun, sawing it off, and discharging both barrels into my head on the steps of the state capitol. I could have left a note to explain my reasoning to the media but this would almost certainly not have served any purpose. I would have been reviled and dismissed as a madman and additionally the people who loved me would have had to deal with something monstrous. The idea of dying an intense, exuberant, exciting death has some appeal to me though. My favorite example is that of Major Kong from “Dr. Strangelove” who rides a nuclear bomb down to Earth while whooping, hollering, and waving his cowboy hat. That was an awesome way to go and I envied it. I thought to go to a freeway on-ramp and grab the bumper of a passing eighteen-wheeler. Then I would just hold on as long as I could while the lower half of my body dragged off. Soon I would lose enough blood, pass out, and let go. One problem is that someone would likely stop the truck right away and I might just end up with my legs all ground up, in a hospital bed, under psychiatric monitoring. Along the lines of Major Kong, I have also fantasized about being attached to giant explosive rocket and launched into the sky. When it reached a certain height, it would explode. That’s the way to go. Before I got hurt I used to think that when I got old I might go to Africa or Indonesia and run to the crocodiles or lions. That would have been pretty cool. But things are easier said than done and who knows if I would have had what it took at that point.
In philosophy we have something called the “Principle of Sufficient Reason” which is really just a fancy name for what a lot of people generally believe, namely that whatever happens, there is a reason sufficient to explain it. A famous attempt at a counterexample is called “Buridan’s Ass” where it is claimed that putting a hungry ass between two identical piles of hay should give it no reason to choose one over the other, so it shouldn’t eat, but it does eat, so the principle of sufficient reason is false. The question in my case is, what exactly will it take to send me over the edge, so to speak? I feel I have to kill myself, but what will it be about the moment I actually do it that is different from the moment, or hour, or year before? I have had some very painful moments but I am still alive. I think perhaps finishing this book and putting all of my affairs in order, which is more or less done, might do it. But what if it doesn’t? What will be the nudge? I sometimes feel I can only speculate. One might just say it will be the moment I simply choose to do it, but I’m not sure it’s so simple.
I sometimes think I might just do it without any premeditation, something like "Now's as good a time as any." Is what is needed a state in which I’m so tired and heavy that I just want to sleep once and for all? Or will it be a moment when my guts are tied in torturous knots of emotional pain and humiliation? Or will it be madness? Strangely it took over a year for the thought of using alcohol to even occur to me, but that is something I’ve considered. A few times I had drank a little it seemed not quite as bad to me anymore. Like I could just cut myself open and drift off to sleep.
I’ve heard it said that those who are getting close to suicide stop talking about it and can even be observed to show a kind of elation once the decision has finally been taken to end it. This does not surprise me and I don’t know if I would have spoken of it much toward the end if I didn’t have so many details to deal with. I have already explained that all I really wanted from the world was help and support in the process of dying but I have known for a long time that was not going to happen. When you, reader, visit your old and dying relatives imagine that just maybe, if they could, the only thing they would want was to die quickly, painlessly, and with dignity. And the other thing to imagine, to really imagine and try to experience for even just a moment, is what it must feel like to them to know that what they want is so simple and so easy, and yet not ask because they know they cannot have it and there is no hope of them being helped, especially because they perhaps feel the need to protect their loved ones from the law. Try to imagine the desperation and helplessness of that situation, dear reader.
I’ll say it again. Not allowing people to choose the time and manner of their own deaths is madness. It is burning witches. It is executing people for making scientific discoveries. It is torturing infidels. It is absolute, unqualified, inhuman insanity. There are millions who agree with me and I’ll warn all of you again and again. Beware! There could be a horrible fate waiting for you and if you don’t all get together, look each other in the eye, recognize the insanity, and change the laws, you could wake up tomorrow as a head on a corpse with no way out for the next thirty years.
I thought of trying to starve myself to death. I thought maybe the experience would be interesting. I got into my tenth day with only water but it wasn’t going well. I thought I might achieve some sort of freedom from my suffering before I died but it turned out not to accomplish what I hoped it might and I got extremely weak.
Sunday, February 17, 2008
I’m at a point now where this could just end at any time. I don’t know. My “to do” list is blank. I have merely to print a few documents. My dreams seem so distant now. The life I loved and the things I loved so far away. What world do thoughts of precious things shine through from? Thoughts of running through the woods, through the fall leaves, echo from the strangest and most distant places inside of me.
Some have told me recently that I will be a coward if I take my own life but the only cowardice I can see is subjecting myself to such a miserable existence. To live only because I am scared to die, that is cowardice and slavery. But even if I have courage it is courage I do not get to keep. I want to grasp what I love and hold it fast. I want to hold fast to something but everything is in ruin. It is not impossible for me to keep existing, but it is impossible for me to live. No paraplegic life is good enough for me and I cannot defile myself any longer by being degraded and humiliated in this hell.
And even now I come back to being full of sound and fury! “I refuse! I will not!” Still I try to hold onto my pride, onto something, but am I just in denial that I will soon lose it all? You don’t get to have pride when you are dead.
I laugh at myself because “I would not be caught dead . . .” has taken on a new meaning for me. Things are in order. I will run the dishwasher. Will anyone ever understand that self-respect and suicide are compatible? That a person can end his life out of love for himself? That suicide can be an affirmative statement of deeply cherished values?
The thought that those I love may turn against me in their hearts after I am gone is heavy. I think how they might condemn me as a selfish coward and then all of the love I tried to show them will be sullied by such thoughts. All the light I tried to bring into their lives will be dimmed because they will find themselves able to think of me with admiration or respect. On the other hand this may not be true at all. To those I love: I gave you my best while I was able.
What do I feel now? Doubt whether I will be able to kill myself. The alternative is unthinkable for me but I can’t believe the position I find myself in. I have been planning and putting things in order for the longest time and now when I find myself ready to leave I simply cannot believe it. I want to ask questions like “How did it come to this?” and “Why?” but I know there are no answers. I can still imagine happiness and know exactly what it would take to get me there. How can it be that there is no chance for me to ever be free, that there is no way out of this cage? But these questions make me feel childish, as if I cannot face the reality of what is in front of me, of what I have known and planned for the longest time. There is no backing out because there is nothing to go back to except a life that I despise, a life that tortures and torments me every day.
I’m surprised at how mundane things seem as I make my preparations. Printing things, putting things in order. Two people called me today and I just talked to them like usual. Nothing seems particularly interesting about my experience right now. I ate half of a leftover salad today. Mundane. I want out of this ruined life. All I want is to live. I want out of this cage. I’m tired of this shit.
Tuesday, February 19, 2008
Yesterday was an absolutely hellish day and today was not much better. I want to escape from the truth that I have to die. I am very scared and desperate. When I wake up my existence is full of pain and it is the same all day long. A hundred times each day I feel horrible pangs of tortured emotional pain. I don’t want to die but I have to die. I have to get out of this hell. Yesterday I tried to get a feel for hanging myself. I don’t want to die frantically and in terror so I wanted to be able to ease myself into it. I don’t know if it can work that way though. I put the rope over my shower bar, around my neck, pulled tight and it off to see what it would feel like. I got disoriented and panicked and groped madly to get the rope untied.
I have the rope, a knife, and a .40 caliber pistol. What does it take to go over that edge? I seem to think maybe I can go about it in a roundabout way, like facing it head-on is just too much. Like I could somehow disengage with what I was doing so that I “accidentally” or nonchalantly cut open my stomach. I don’t want to shoot myself in the head and I’m not sure why. There is something about it I hate, but I wonder if it’s the only way to get it done quickly. I think about maybe shooting myself in the stomach too. Somehow it seems that might be easier, but I see a pattern emerging where one method looks better until I get close to it and then I want to switch to another because I think I’ll be more likely to do it. Right now shooting myself in the stomach seems best. I imagine saying, like Othello, “I took by the throat the circumcised dog, and smote him- thus.” Somehow I think I would be able to then just curl up and bleed to death slowly and it would not be that bad. And then there would be no turning back. I don’t know why this seems better to me than doing it with the knife, but there is something about sticking a knife into my guts that bothers me. I have already broken the skin of my stomach with the knife and the feel of it as it cuts the flesh stalls my nerve. When I look at my lower body it looks meek, almost feminine in its passivity.
I went to school today and had to come home and take a nap between classes. This just shows what a hard time I am having getting on with things. It has been a theme for me since right after I got hurt that I have carried on with school and life because at least then if I ultimately lack what it takes to kill myself I will still have the chance at a career and something other than complete financial ruin, which I have already pushed myself to the edge of, purposely in part. People tell me it was courageous of me to start law school a few weeks out of the hospital but I know the truth which is that courage had nothing to do with it, at least as far as I’m concerned and you already know that other people’s opinions of my courage or cowardice really mean little to me. Of course it’s nicer to be thought of as courageous but it has little to do with what I feel about myself. I came to law school because there was nothing else to do. I went through a year of law school for the same reason and that is why I will get up tomorrow and go. Not because I am strong or driven, but because I am desperate and trapped. I have all the passion in the world for the live I used to have in front of me, the one I dream of with a broken heart every day, and none at all for the life I have now.
Therefore thou art not wrong
Israfeli who despisest
An unimpassioned song
To thee the laurels belong-
Best bard because the wisest!
Merrily live, and long!
Every day I am humiliated a hundred times. Every day I am made wretched a hundred times by things I desire passionately but can’t have. Every day I have a hundred ideas I cannot put into action. It has not abated or become less painful in the last twenty-one months. My body is still a horror to me, digging shit still fills me with loathing, I still feel like a deprived, miserable slave every single day, with no end in sight.
Wednesday, February 20, 2008
World! Why won’t you help me?! Why do you leave me alone like this? I have to die! The idea of living like this for the next thirty years is a nightmare for me. It’s horrible! It’s like the Buddha said above, without health life is not life but a state of languor and suffering- an image of death. I’m scared and just don’t want to die alone. Is that so much to ask? Why is there so much denial everywhere? We all have to die, why can we not help those who have decided they are ready?
I just spent some time putting pictures online because my website is going to disappear soon. People can look and see all of the things I did in just the past few years. I had so many wonderful adventures, so much freedom. My quality of life is devastated. I hate my existence! I hate being like this! I just want to be free, I just want to get out of this cage I live in. I can’t believe that the world will not acknowledge that being two-arms-and-a-head attached to a corpse is simply not the life for some people and that it is horrible for them. I am scared but I think I can be brave, though what frightens me so much is being alone. I don’t want to stare at the four walls of my room when I die, I want to be looking at another person or at least know that I will not die horribly and in a terrified state. Will you mock me world? Will you say that I am a coward and should be ashamed of how I am blubbering in the end, right at this very moment? As long as you think there is nothing similar between you and I, perhaps you don’t think you have to concern yourselves with my fate. If you think you could never end up like me, in a situation where you wanted to die well and the world would not help you, maybe you can afford to turn your backs on me. Well, if you are lucky! I would not be so sure, people of the world, that you will find death so easy to handle when it is upon you. My situation is very unusual, but not so unusual at the same time. Thousands of people commit suicide every day and many of them are old people who have decided to take matters into their own hands. One statistic I found said that 1.5% of people die of suicide. That is no small number. There is nothing strange or unnatural about suicide in a great many cases- what is strange and unnatural is the way those who commit it or want to are regarded and treated by society in general.
I’m so tired. Tired of feeling the way I do, tired of suffering, tired of being imprisoned. Maybe when I finally act to end my life I will be so indifferent it won’t even matter and I won’t even be scared. Just tired, wanting to stop hurting. My life is so hellish it’s unbelievable. I just want to escape, to run back to life and live again. I want the sun to shine on my existence again.
I feel strange about talking to people now because though I can still interact normally and talk about normal life-things, on my end there is no life left so the only discussion that could center on me would involve my feelings about wanting to die and needing support with it. But nobody can really give me that so I become very isolated. A few people have talked to me about it quite a bit but how long can I keep talking about it? It’s becoming a perennial topic for me now. The place I have to go to get near killing myself is so painful that I fear it tremendously. It is a horrible place but I feel like I need to keep pushing myself in that direction because it is the only choice for me. I’ve also been thinking how unusually I have gone about this whole thing. Most people don’t even write notes when they kill themselves. I have written a book and done all sorts of other things. Who does that? What a bizarre existence it has been for me since I got hurt! Get me the fuck out of here!
I just read a whole bunch of other suicide notes and was surprised by how sane many of the writers sounded. Some of them were in pain that sounds a lot like mine, but I perceive, and this may sound naïve, that there is a big difference between me and many others in that what I want is not unlikely, but impossible. That is, like I have said over and over, I want to run and jump and free and be myself. So many of those people felt unloved or unappreciated or like they were burdens on others. If I got better tomorrow I would know exactly what to do to make myself happy. I think there would probably be some lingering psychological trauma from all the torture I have been through but it would be something I could deal with over time. The first thing I would do would be to run down the street yelling with absolute, unrestrained joy. Singing songs, hugging people, ecstatic. I’ll say it again, for the hundredth time: there is absolutely not a single thing wrong with me other than being paraplegic. Being in love with my life was something right with me and having to live like this can never make me happy. I am sane, sane, sane. I am a happy, healthy, enthusiastic person inside. How horrible this life is. How very sad and heartbreaking it is for me. I am so sad about it. I just want to have fun and be free. An ant just wants to be an ant, a bird just wants to be a bird, a dog just wants to be a dog. I just want to be me. That’s all I want and I can never have it again.
The Japanese write death poems:
Cicada shell Pampas grass, now dry Like dew drops
Little did I know once bent this way On a lotus leaf
it was my life and that I vanish
These three are my favorites. I have a book of them I read to comfort me in the hope that I will be able to die well and peacefully. I really want that badly and I’m not sure why the desire is so strong. I told you about my friend Abel. When I talked to him about this he asked why it really mattered, saying that I’d be dead shortly afterwards anyway, so why worry so much about the suffering or terror? This is another example of why he is “Honest Abe”. Maybe I should just toughen up and not be so scared of dying even if it is horrible? I can’t answer this other than to say that I cannot get past it. I suppose the fear is of losing control of my mind and my emotions, perhaps. There is something about that complete loss of control that frightens me a great deal. Should Browning be my inspiration to be free from the fear?
I was ever a fighter, so- one fight more,
The best and the last!
I would hate that death bandaged my eyes, and forebore,
And bade me creep past.
No! let me taste the whole of it, fare like my peers
The heroes of old
Bear the brunt, in a minute pay glad life’s arrears
Of pain, darkness and cold.
But Browning thought he was going to see God, so maybe it was a little easier to boast. I would certainly not fear a little pain if I knew I was going somewhere better. Still it makes no sense, as Abel said, to fear dying badly. How will I face it? Even now my mind still fantasizes and tries to find ways out of this maze. I imagine a hundred different ways my life could be and constantly try and find ways it could be acceptable and at every turn I run into walls. My confinement is just a fact and the only possibility is to get used to it and to be content in a much smaller space, literally and metaphorically, in life. Everything I’m writing here now is just impromptu, like a journal. It’s just my thoughts as they come. Again I think of those woods I looked at, when I could feel my heart breaking so slowly and profoundly. I just need to be free! Free! I guarded my freedom so carefully in life. For so long I was boxed in, repressed, and one day I finally became free and did everything I could to stay that way. Do you know something else I want back along with my freedom? The freedom to be foolish. I want the freedom to act out obnoxiously if I want, to be loud, rash, dangerous, foolhardy. Do you have any idea how ineffectual all such recalcitrant and spiritedly defiant behavior has become for me? This may make no sense at all to you but it makes perfect sense to me. If I get mad I want the option of getting in people’s faces and causing an uproar if I need to. Not that it’s something to do often, but it’s good to know that one can, just like it’s good to know one can fight and defend oneself or one’s girl if one has to. How feebly I present in such situations now, muzzled and chained like a dog! Now the solution for people who don’t want to have to confront me is just to laugh and walk up some stairs. “You can stay down there and run your mouth, wheelchair boy.” Once again, as with so many other things, I have to learn to deal with my cage when it comes to how I relate to others. Whether it has to do with strife, love, fun, affection, or almost anything else, I have to assume the role that is imposed on me and I don’t fucking like it!
Sunday, February 24, 2008
I don’t think I’m as scared anymore. I have known for some time that I have just been attached to things that don’t even exist anymore. In love with what I can never have, passionate for a life I can no longer live. Though it doesn’t make sense in a way, I have been alive perhaps in part because of an attachment to those things, things that I always knew were gone forever.
How close am I? I don’t know. I’m in bed with two sweaters on and a stocking cap next to me so I will not get cold when I bleed to death. I don’t know what it will be like. Can I put the knife in? Water. What do I feel? When I think of the act I grimace and grit my teeth. Is it anger that’s there, fear? I hate my fear. I hate when fear stops me from doing anything. Why do I have to talk of hate at this time? Do I hate people? No, people are people. They do what they do. It’s still light outside.
No happiness left for me, ever. I can never have what I want. I took the knife out and looked at it. I don’t know if I can do it. What am I doing? Death? There is no way around death.
I have to die eventually. There is no way to avoid it. What a miserable life this is. How horrible it is to be like this. I go to school, I do things with people, I try to socialize but it never gets any better. The clock is tolling 5:00 pm. It’s quiet here, all I can hear are occasional noises from the street. No voices, no footsteps.
My stomach looks so soft, meek. It seems separate from myself, as if the idea that my life is connected to it is something abstract. It is an unfeeling thing. I just looked and I’m urinating on myself though I just emptied my bladder three hours ago. It is unpredictable as always. I got up and cathed. Maybe I don’t want to die in piss and maybe I don’t know if I can even do it. I feel like the necessary state of mind is fading. 200mL came out when I just cathed, which is far less than my bladder has been holding the last few days. I don’t have an infection. Constantly tormented by all of this shit.
This morning I woke up with ass-jelly coming out of my ass. My theory is that it’s the stuff my ass makes to lubricate the shit when it comes out. It has the consistency of the stuff gefilte fish comes in. Last night I had to dig shit out of my ass and every now and then, for reasons I don’t know, my ass decides to make extra jelly and spit it out while I am sleeping or at some other time.
“Fuck.” That’s what I think when I think about putting this knife in my stomach. That’s also what I think every morning when I wake up into this miserable existence. The minute I wake up I think “Fuck” or “No”. Then I start thinking about the things I love and it hurts me. This morning I started to think of something I love and purposely redirected my mind from it twice just because I didn’t want to feel the pain. What kind of fate is that? Where one has to let his most heartfelt, precious, loving feelings die so they don’t torture him? I am so tired of my cage. What is stopping me from dying? Why can’t I do it?
I wonder if I still want the help of others. Yes, I’d like that. I’d like to be with supportive people who would help me through this. I still want that but feel my desperate desire for it has weakened and moved more toward apathy since I know I can’t have it. You poor people. I always wanted to help the world. People are going to keep killing themselves. Old people who are ready to die will keep taking things into their own hands and nothing is going to change that. We all have to face death eventually. But I’ve already told you, you are all turning your backs on yourselves. It’s the laws, the laws. There are millions of you out there that know it would be right to help me. I’m surprised that I have just used the word “right” since I don’t believe in morals, but there are few things I have ever felt so clearly, if only because this whole thing is one of my profoundest, most human experiences. I am a sane, intelligent, thinking, feeling human being who is in a horrible situation. I need help and it’s nothing big that I need. I just don’t want to be alone. It’s the same thing I have said before. I want to hold the hand of someone I love. I don’t want to be alone at this time that is so, so sad for me.
What will it be like to die? I feel that maybe indifference is the key. So what is going on in my mind right now? I know I can’t live but do I have to talk myself into suicide? That is, how do I prepare? I want to stay calm. I imagine putting the knife in calmly. But again that is abstract and not connected with the fact that it will bring about my death. Am I in denial about what I am doing and setting myself up for a shock once I do it. That is, will I think I have prepared myself and then just lose my composure once I see the knife in my stomach and realize that death is really, truly upon me?
I think of graveyards. I think of the scene in “Amadeus” where the guy throws lime on Mozart’s corpse. I think of Henry Clarke’s illustration for “The Premature Burial”. I think of the song:
Lay me doon,
in the caul caul groon
monie mair huv gaun
Life is out there, it is all around me. But I am dead. I cannot live. This is not life. I still want to live, I want to get better. I can’t though, nobody can help me. I hate my life, I hate it. People will keep talking after I am gone, they will say all of their words, words, words. The cripples will say their words and others will believe them. Some of them will be true but many of them won’t. The “happy” ones will receive gratitude for sparing others the trouble of thinking about the truth. How many careers have been made by sparing others that trouble? How many ideas have been loved, how many religions have spread like wildfire for having that capacity?
Death is your end- Mr. Jangley Bones, clattering and clacking. Am I scared? I don’t know. Can one live out of habit? I just looked at the knife and wondered why I don’t just do it. Then I thought maybe it was my habit not to kill myself. Like James said, habits run deep and are highly general. Crease a piece of paper and it will acquire the habit of being folded, its fibers will take on that habit. All I have ever done has been to live. I have only ever pushed myself upwards or toward goals. I think part preparing for killing myself has been to acquire habits that push me towards it. I see the decision clearly but have had to slowly push myself to act in accordance with it. I haven’t been able to quit life cold-turkey, probably because I was so attached to it. I had the mind of one who was wildly in love with his life and in a moment my life was taken away from me. So I have had to push myself toward death as if it were a goal when in fact it is no goal at all. So now I stand in front of that goal I have set for myself and see that there is nothing there, just as I have always known there was nothing there. So how was I even able to push myself toward it? Again, with no goal where is the motivation?
The last time I wrote about killing myself, when I was going to try and hang myself, the pain and fear were far greater. I don’t feel as much pain and fear now but is that only because I am not as close? Or am I closer and just more indifferent? I thought I was perhaps very close an hour ago but now I’m not so sure. It’s a leap, how does one know how close one is? Or does one just all of a sudden know? I heard a story of a man who announced that he was going to kill himself then went outside and did it straight away. Will I only know that point when I get there? What will that be like? There is nowhere for me to go now. I can only go back to the life I hate. I have to die. There is no choice.
Lady Macbeth did not want her keen knife to see the wound it made. Can I watch the knife go in or should I not look? It’s going to be a lot of blood. I’m tired. My arms feel weak. It’s getting hard to type. Why does this feel so familiar? They talk of your life flashing in front of your eyes and every time my imagination gets close I feel something like déjà vu. I think I may have described this already, but scenes from my youth flash in front of me. But it’s not just that, but the intensity of the moment brings things back. I feel like I’m facing a challenge remarkably similar to so many other challenges I have felt in my life. Such a feeling of familiarity.
I wonder if the feeling I get after I cut myself might even be one of the whole thing being mundane. Richard Feynman said he would not have wanted to die twice because it was so boring. I liked Feynman. So what do I want it to be like? I don’t expect to like it and I don’t expect any feelings of triumph though I have hoped for that at times. I have hoped that I would feel liberated and powerful, as if it were a tremendous act of defiance and contempt for a life that I despised. So many of those kinds of feelings are going away now. I think in many ways they were expressions of the life inside of me, still wanting to fight, still wanting to win and conquer. But there is no fight and there is no winning. That’s one of the essential truths for me in this whole thing and I hope it has been grasped. Again, the whole thing has nothing to do with strength, courage, perseverance, or any of those kinds of things. I said already that I see almost zero probability of me ever being cured. So since I see in being a paraplegic no life that I could possibly accept or be happy with, there is no fighting. I want to fight but one fights for something. Being paraplegic is not a life I can fight for because I hate it. I want a fighting chance. I can’t live life in chains that will never come off. All I can hope for is to become happy with a life that now tortures me. One that cages me, pens me in, puts up walls all around me. One that makes me smaller, misshapen, that boxes my heart and spirit inside of me. But that’s no hope at all, no challenge at all. As if one could say, “You will be enslaved from now on with no chance of escape. Your owner will use your wife and daughters as he pleases, for his pleasure. If you do not work you will be whipped and tortured and it will be the same for your family. Your hope in life, and your challenge, is to become happy with this.” But that’s no hope at all, no challenge at all. Still, a slave can hope for freedom, he can dream of the day he will be free and that can perhaps sustain him in part because it is a real possibility. All that needs to change is something very concrete and simple to understand. The master can take off the shackles and it is done. What could give me my freedom is something nobody understands. Nobody can free me. Probably the life of a deaf man would be good enough for me, or that of a mute or a man missing a leg or an arm. But not the life of a paraplegic. There is not enough left for me. Too much of what I love is gone or held at a distance forever, too constantly am I forced against my will, painfully frustrated, or deprived of what I want.
And are there still those out there who will say there is something “wrong” with me because of all this? How unjust those people are to me. Those people, it seems to me, would lock a wild animal in a tiny cage and find fault with it for experiencing the most horrible agony. That I could be viewed as somehow defective seems to me the most monstrous and inhuman of truths. But it’s stronger than that, because I know there will be those out there who despise me for some of the things I have said.
At the end of Camus’ “Stranger” the main character says:
“As if that blind rage had washed me clean, rid me of hope; for the first time, in that night alive with signs and stars, I opened myself to the gentle indifference of the world. Finding it so much like myself- so like a brother, really- I felt that I had been happy and that I was happy again. For everything to be consummated, for me to feel less alone, I had only to wish that there be a large crowd of spectators the day of my execution and that they greet me with cries of hate.”
I mention this because I have found it almost reassuring at times when I have thought of how abandoned I feel by the world, or how despised many of the things I have said will be. But my life and feelings are not consistent with that theme. I purposely kept certain kinds of anger alive in me because I thought that was right, but on the whole I did not get pleasure from despising but rather from loving what I thought was great. So perhaps in those moments the reassurance I felt was something like “You are truly alone in this Clayton, therefore allow yourself some peace.” I’m not like Camus character in that I am not indifferent at all. I’ve said it before, I am passionately attached to many things in life. I want to live. I want to be healed this moment, finish school, do amazing and wonderful things, have a family, have a house, have grandchildren, and live to be ninety. I want to live. I want to live.
How horrible this life is and how sad I am over it. How hard and strange it is to die. I really never stop being surprised that so many of you can believe in God and believe that he loves us and cares about us. How could you believe such a thing? How can you thank God for the food on your table or because he made you hit a home run but not blame him for the horrible suffering he allows? Why the praise but not the blame? I never seem to hear “God I can’t accept you helping me to hit home runs while millions of people are suffering in unbelievable agony. You are supposed to be all-powerful so I see no reason you couldn’t help everyone if you chose. I perhaps cannot understand your plan, but as long as children have leukemia I would strongly prefer if you spent your time there and just let me be a mediocre baseball player because I cannot in good conscience be party to your plan so long as it prefers my baseball skills to the healing of children with cancer.”
God loves us? Aren’t people ashamed to say such things? Knowledge is a slippery thing in itself but it seems to me that most people know on some level that we are on our own. God is not helping us. No omnipotent being in the sky loves us. But it’s precisely that kind of belief that causes people like me to end up abandoned. My being a paraplegic is part of God’s plan for me. It has happened for a reason and it is not up to me to question it by taking my own life. And on and on, it’s primarily religious sorts of reasons that stand behind euthanasia laws.
So now all of this writing has diverted me from my purpose and I am not in the right state of mind anymore. If you think it is easy to procrastinate on a school assignment, try killing yourself some time. I imagine the feeling of the knife going in will be hollow, something like gutting a fish. The outside is tough but the insides are soft so you feel like you are cutting into something hollow when you slit its belly open. I think about wrapping the handle of the knife so I don’t feel it and don’t have to even look at it. I will maybe just see the blood and then feel the light-headedness before I lose consciousness. “Now, really? Now?” That is what I think.
Fuck I did it. I stabbed myself. I’m bleeding. I can’t believe it. I’m shaking but not scared. Just don’t know what to think. I don’t know if I’m bleeding enough but I got myself pretty good. There is a lot of blood but maybe not enough. It’s not stopping though so that’s good. I hope it will take a little time because I want to experience it. I want to stay in control. This is my moment.
It’s not so bad to be dying. Am I still lying to myself? I guess I don’t know. I am starting to feel a little funny. It’s not what I expected, I feel completely normal. I had to put the knife in slowly, a little at a time because it was hard. What made me able to do it was just the feeling that there was nothing to go back to. That life as I have been living it would just be more weeks and endless years of pain for me. I think I might be feeling a little dizzy. Honestly I could have a normal conversation right now while I am bleeding to death. Haha, I just laughed. I’m smiling. It’s funny. This is what I wanted. I wanted to be okay with dying and I am. Still smiling. The wound stopped bleeding as much so I had to try and pull it open with my hand. I don’t want to cut again, I want this one to do it. I’ve lost a lot of blood so I hope this does it.
I cut again. I got the artery this time. It’s pumping out, not much time. What can I say? Life has been everything to me. Was it good or bad? It was just life, everything was in it. I’m glad I lived and wish I could have lived more. I think I’m having tachycardia, I’m not sure. The pumping slowed, maybe it wasn’t the femoral, no I guess it wasn’t. When I put the knife in the first time I felt bone on the other side, maybe my ileum, so I thought I got all the way through. I’m bleeding good enough though so I don’t think I have to get in and end it too fast with the femoral if that’s what I missed.
I’m really surprised at how unconcerned I am about this. I look at the wound, a big, gaping stab hole in my stomach, and it doesn’t really bother me in the least. This was not what I expected everyone. Maybe think of me when the time for you to die is coming and be reassured because it’s not so bad at all. In fact, it’s not bad at all. The time leading up to it was what was horrible. As Nietzsche says:
He who exults at the stake, does not triumph over pain, but because of the fact that he does not feel pain where he expected it. A parable.
It’s true friends. It’s like that with so many things is life. We spend so much time fearing things but then when we are face-to-face with them we find we had nothing to fear all along. I’m glad to be talking to all of you now but I guess in the end I don’t need anyone to comfort or help me. I still suppose it might have been nice to say goodbye in person instead of like this. I suppose my advice for the living might just be: Live! And when it is time to die, die!
I’m still feeling fine, maybe I’m not bleeding enough. I just don’t see how I could live indefinitely with a wound like that. I know the people I love are going to be so upset about this but there is no need! Please, don’t! I’m fine and everything you should be feeling badly about is behind me now. All of my suffering is over and it was horrible, nightmarish torture that I went through for the last year. It’s okay now. I have no fear, it is only sadness because of everything I still wanted to do but as I’ve said so many times all of that was gone anyway.
Part of what I wanted in desiring to die in the company of those I loved was to reassure them and perhaps give them courage to face death well. That was something I really wanted to give to them and I’m sorry I can only do it with these words. I was driven almost mad by all of the things many other people said about paraplegia, suicide, and what was still possible in my condition. I hope everyone understands how all of that affected the tone of what I wrote. I was so frustrated with all of it, I thought it was so insane. But I only wanted to break free of it all and say what I felt. I felt like it stifled me so horribly.
I cut some more and the blood is flowing well again. I’m surprised how long it is taking me to even feel anything. I thought I was dizzy but I’m not sure I am now. It’s 8:51 pm. I thought I would get cold but I’m not cold either, I’m actually hot but that’s probably the two sweaters. Starting to feel a little badly. Sweating, a little light-headed.
I’m going to go now, done writing. Goodbye everyone.