Untitled Document

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

- Coleridge

Even the bravest rarely have the courage for what they really know.

-Nietzsche

Preface

“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.”

–Stephen Hawking

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.

1

The Injury

“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.”

–Dalton Trumbo

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

persistent illusion.”

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.

2

The Cure

Hope in reality is the worst of all evils because it prolongs the torments of man.

–Nietzsche

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.

3

Time

Lost time is never found again.

-Franklin

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.

4

Math

Mathematics is the supreme judge; from its decisions there is no appeal.

-Dantzig

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.

5

The Brain

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?

6

Self

Between the idea

And the reality…

Between the conception

And the creation…

Between the potency

And the existence…

Falls the Shadow

-Eliot

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.

7

The Trial

“Who alone has reason to lie himself out of actuality? He who suffers from it.”

-Nietzsche

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 freedo