Long after his parents had turned out the lights and he had settled back onto his two pillows (three if he had a cold), he would often find himself playing a game that engrossed him for what seemed like hours. It was only years later that he thought back to the late-night competition he convened and ascribed it new significance; when he asked around, nobody else could remember playing a game like that. He recalled the nature and 'rules' of the game surprisingly well, but what remained most vivid in his memory was the intensity with which his 7 year-old mind and body had played the game. Well, to be clear: his body played. His mind was merely the referee.

Lit by the 60-watt bulb of his reading lamp, each night became the scene of a contest for supremacy between his left hand and his right hand. The rules were simple and left ample room for creative gameplay — each hand could do whatever it wanted to make the other hand submit. This included conventional modes of attack such as punching or scratching, but usually involved much more intricate forms of combat. For instance, one hand would often creep around behind his back, or maybe up through his pyjama top, in order to obtain the all-important element of surprise.

It is worthwhile clarifying what this game was not. It was not a pre-adolescent version of cutting or self-harm — the point was never the infliction of pain upon either hand, nor can he ever remember actually bruising himself or making himself bleed. Nor was this early-onset schizophrenia or multiple personality disorder — his hands may have been two wholly distinct entities, but his mind was unified, at least in the psychiatric sense. It's a lesson he of all people had never had to learn, had truly always known: it's possible to be of one mind but have your body split right down the middle.

A body split down the middle into two sides, and each hand filling the solemn and dignified position of its side's representative, its standard-bearer, its gladiator. Think of David and Goliath, locked in single combat, but each with the hopes of a nation upon his shoulders. Think too of the utter dissimilarity of these ancient biblical figures: the towering giant and the diminutive boy, the muscular champion and the awkward novice, the unshakeable warrior and the terrified child. The powerful and the powerless. Having clarified what the game was not, I may now be bold enough to hazard a guess as to what it was. It was, perhaps, a boy's attempt to grasp the meaning of the possession — and irretrievable loss — of power.

By day it was his left hand — his sinister side — that possessed the power. He wrote with it, caught with it, lifted with it, touched with it. If he could help it, his right hand stayed in the shadows, in the background. "Nobody will notice it," his parents had told him. Well, he did his damndest to make sure that nobody did. At 7 years old he didn't have to worry about shaking hands with it yet — that made things easier. He also didn't yet have to worry about draping it over a girl's bared shoulder and accidentally brushing her breast — that made things easier too. So by and large, it wasn't too tough for him to make sure nobody noticed. Occasionally, though, there were slip-ups. It was hard to make sure nobody noticed playing sports in the schoolyard. And it was especially hard to make sure nobody noticed when everybody was bragging and showing each other their newfound tricks for tying laces and he was stuck watching silently and fingering his velcro shoes. By 7 he understood very clearly that power demanded attention when it was present — yet somehow, it demanded equal attention by being absent.

So maybe his nightly jousting matches were his way of trying to redistribute, to spread some of the power around, to shift the proverbial balance of power. Kids' sense of justice is always being offended; they're always yelling about something or other being unfair, about the powerful stamping on the powerless without due cause. Possessed of one body split crystal clearly into powerful and powerless sections, perhaps this was his opportunity to bring some justice to the world, or at least to his body, via his personal nightcourt. This is a sanguine, even rosy interpretation of his childhood game, but he can't be sure it's the correct one. Because he can remember the game and its protracted, boxing-match intensity, but he can't remember — I can't remember — which hand would usually win.

— — — — — —

What does it mean to live in a body so clearly sectioned off into powerful and powerless chunks, so irrevocably delineated into strong half and weak half? When I was negative-90 minutes old a doctor told my sweatsoaked mother that caesarian sections were "not something I believe in" and that she could have a "normal" vaginal birth if she "didn't give up." When I was negative-60 minutes old the computer screen monitoring my breathing and pulse went blip for two seconds. After the man called a doctor saw that, suddenly he didn't seem to care so much about that normal vaginal birth. At negative 45-minutes they began to cut into my mother's stomach and at 0-minutes old I was lifted from her womb with a section of cells in my brain already dead.

Some cells in my brain were already dead; I was brought into the world with death already physically imprinted inside my head. The man called a doctor muttered about the umbilical chord wrapping around my neck for a fraction of a second; I gurgled in acknowledgement — or was it denial — of this unfortunate mishap. Clearly all the cells in my brain weren't dead or I wouldn't have been doing any gurgling. My parents were more than satisfied with their mostly-not-dead, gurgling baby. Later, when tests were done showing that the cells in my brain regulating incorporeal things like 'intelligence,' 'memory,' 'cognition' and 'emotion' were apparently very much alive and kicking, my parents were overjoyed.

But what of the corporeal, the tangible? What of my body? A man called a doctor decided that my mother was going to have a normal, vaginal birth. Because of this man's certainly about what was normal for a woman, six months later another man called a doctor drew a line down the center of my body and labeled one side of my body as normal and the other as abnormal — as subnormal. He drew the line with a grimy fingernail, but he may as well have been using a permanent black marker, or perhaps a scalpel very similar to the one used six months earlier to (finally) cut my mother open. His fingernail was in fact far sharper than a scalpel — it cut into me deep enough to leave me permanently divided. Split in half.

Wait just a second, you might interject. Hold your horses. That fingernail didn't do any cutting or splitting. You were already split, from the second the chord designed to keep you alive turned on you and tried to kill you instead. The second man called a doctor merely pointed out the division — his fingernail only traced the dividing line that was already there. There was no violence in his act. In fact, he was doing you a favour — it's helpful to know where your strengths and weaknesses lie. If you want to blame something, blame that traitorous chord, not the kindly finger of the man who's devoted his life to making people as normal and as not-dead as possible.

These arguments make a lot of sense. They are anatomically sound. And yet — and yet. My hand is only as powerless as my parents — my teachers — my friends — tell me it is. The umbilical chord is only as murderous as the doctors demonstrate it is.

Of course, they have convicted it after the fact, these expert witnesses for the prosecution. They have submitted tests, readings, diagrams, and voluminous medical textbooks as exhibits A, B, C and D — piles of irrefutable, incontrovertible evidence. Any jury would be foolhardy not to render a verdict of guilty (first-degree? Did the chord premeditate its assault on my neck?).

So. Defendant U. Chord (represented by legal aid — that's all he could afford) is justly found guilty of first-degree murder, leaving in his demented wake several thousand dead brain cells and one irredeemably palsied half-body. The prosecution's expert medical witnesses are commended for helping bring U. Chord to justice, but like the caring men they are, they deflect all praise and shake their heads in sorrow. "This conviction won't bring back what that poor boy and his family have lost," they say wisely. Slowly, they disperse and return to their offices, hospitals, clinics. They take some comfort in knowing that at the very least, "they did everything they could."

— — — — — — —

Doctors were powerful people. They could bring an inanimate object, a dead thing, back to life just long enough to convict it of murder. But nobody — not even doctors — can breathe life into a dead thing without sucking it out from somewhere else. In the act of ensuring the conviction, they killed off something — half a body — that felt very much alive.

— — — — —

The doctor's office was another place where it was hard to make sure nobody noticed. He couldn't understand why his parents were always telling him 'don't worry, nobody notices' and then were bringing him to the doctor, who always noticed. Worse, the doctor always seemed to bring it up! At least other people, even when they did notice (and he could always tell when they noticed), didn't bring it up.

He noticed (it seemed like everybody was doing a lot of noticing at the office) that when the doctor did bring it up, it was only to tell him to move his 'weak' leg or 'dead' arm in unfamiliar or awkward ways. If his arm was really dead like the doctor kept saying, why was he trying to get him to move it? Dead things don't move — that's how you know they're dead. Unless his arm worked the way it did with chickens once their heads were cut off — they kept running around for a while. That idea made him smile a secret smile while the doctor wrote something down in his chart, but when he thought about it some more he started to wonder. Did that mean eventually he wouldn't be able to move his arm anymore, that one day it would drop limp like the headless chickens? He couldn't ask the doctor about it, because he was still busy writing in his chart. He could never really ask the doctor anything, because after writing in his chart the doctor would always rush out of the room and mutter something to whichever of his parents had taken him. If he asked the doctor anything he would smile reassuringly and say, "Don't worry, your parents will explain anything you want to know." On the way home, if he asked his parents anything, they would smile reassuringly and say, "Don't worry sweetie, the doctor says you're doing just great. Nobody ever even notices it!" He couldn't help but grin after that, because he knew that when you have three adults telling you that you don't have anything to worry about and that you're doing great, you'd have to be pretty stupid not to believe them. He sat back in the car and stopped thinking about whether half his body was alive or dead.

 

That night he dreamed of headless chickens ripping off his arm.

— — — —

People were always telling him other things that helped him relax and made him feel better, and he was so grateful for it. His teachers told him how smart he was and he felt smart. His parents and aunts and uncles told him how lucky he was that he wasn't in a wheelchair or brain-damaged and he felt lucky. (At that age he didn't know that his parents and aunts and uncles were wrong and that he was brain-damaged.) They told him, "if that chord had stayed wrapped around you for just a fraction of a second more who knows what might have happened." Then he felt scared and thankful and really lucky. (It turns out doctors weren't the only people who knew how dangerous chords were.) People around him were always making sure he knew how lucky he was, and when he saw brain-damaged people or people in wheelchairs, he couldn't help but agree. These people — their chords must have been Grade A psychopaths, not just killers. He wasn't like them. He had narrowly escaped the worst of his chord's wrath. He could walk. He could talk. He was basically normal. Nobody noticed. Thank God for that, Who made man in His image.

— — — — —

When I was five I asked my mother if my right side was something I had done to myself, if it was a function of my own actions, if it was my responsibility. I don't remember asking her, but apparently she was horrified by the question. "Of course not," she says she told me emphatically. Years later, she returned to that question many times: "The one thing we made sure of was that you knew it wasn't your fault." When I was nine I asked my father if there was anything I could do to make my hand stronger. I do remember asking him that, and he enrolled me in a weekly physiotherapy class. Years later, my father returned to that request many times: "We knew it was a brain injury, so there wasn't much hope that physiotherapy would help, but we sure didn't want to stop you if you wanted to try." The physiotherapist gave me a red ball with a picture of a cat on it to squeeze for an hour every day. I squeezed the red ball with the ferocity only children possess. 16 years later I can describe the curve of the cat's smile, the arch of its eyebrows, and the length of its whiskers with a certainty that escapes most of my more recent memories. I can tell you the number of stitches on the ball and the pattern they formed.

One week the physiotherapist asked me if I wanted to meet with some other childrenwithdisabilities. It must have been the first time I heard the word and associated it directly with myself. I wondered what it meant, but I knew it didn't sound like 'dead hand.' When we returned home, though, my mother was aghast. "Why should he have to do that?" she stormed. "He's got plenty of great friends already." The meeting was indefinitely postponed, and I was left to wonder what these other childrenwithdisabilities looked and talked like. I wondered if they had different animals on each of their squeeze balls. I was getting pretty sick of my cat.

— — — — —

I have not used the term cerebral palsy until now because I did not hear it until I was 18 years old. Until I was 18, the biological nature of my disability was stuffed and hidden away like — well, like Rosemary Kennedy. I did not know that my gimped arm and limped leg had their source in an injury to my brain. I knew that a chord was somehow involved, but my murky conception was that it had somehow wrapped around my actual arm and leg. If anyone asked me what happened, I mumbled, and if they asked again, I said "nerve damage." I didn't talk to my parents about it because we didn't talk about it. There was nothing to talk about. Nothing was off, nothing was different, nothing was noticeable. I could read (thank God), I could write. No special equipment, no gadget that could have marked me as disabled, was necessary — because someone was always watching me. I had an entire team of sweepers, pushing away the snow buildup as fast as I could hurtle down the icesheet (only in Canada could I use a curling metaphor and expect to be understood). When I poised uncertainly over a loaf of bread, it was hastily sliced for me. When I sighed in frustration over a dress shirt, the buttons were done up for me with alacrity (although I did manage to develop a life-long aversion to dress shirts, which my parents continue to mistake for some kind of sardonic commentary on middle-class Jewish life). When my knuckles tightened around an unopened box of cereal and bag of milk, they were gently removed from my grasp, unsealed, and poured into the waiting bowl. If disability only exists as a function of the obstacles the person encounters, then my family were master illusionists: around the house, they made my disability disappear. It vanished into air thick with support, thick with care, thick with love. The fog curled around my body and the air was so thick I choked on it.

— — — — — — —

To put it another way: my parents killed off my disability. They denied me my chord-given birthright.

— — — — — — —

Of course, they couldn't kill it off permanently — I suppose when it came to murder, they didn't have the clinical competence of doctors. As soon as I left the house the air would thin out, the fog would lift, and my palsied side returned to visibility, resurrected like a zombie in all its B-movie glory (it moved like a zombie, too). Out of the house there were times when it was far too visible — it glimmered like it had been injected with radioactive dye; it shone like a fugitive in police headlights. Sometimes the lights were so bright they paralyzed me.

— — — —

Years later, around the same time I first heard the words cerebral palsy, the long-delayed meeting with other children with disabilities took place at my own initiative. Of course, by then, we were teenswithdisabilities, or maybe even youngadultswithdisabilities. I mentioned that I'd spent much of my childhood feeling as though my disability was either wholly invisible or inescapably highlighted — it swung crazily back and forth between these two extreme states, dis-and-reappearing, always pulling the wrong trick at the wrong time. Unprompted, every single other attendee emphatically agreed with me. It turned out that this was our shared bond: such medically dissimilar conditions as Attention Deficit Disorder, cerebral palsy, spina bifida, and diabetes all possessed the curious capacity to vanish and re-emerge without warning. We found it odd that while anatomy textbooks were overflowing with definitive information about the 'disorders' we lived with, there was absolutely no extant medical literature documenting this remarkable side effect that seems to be common to all our disabilities. If only the medical textbooks could help us understand this most unsettling aspect of our experience, we murmured. Instead, we are left to hazard guesses about the cause and the trigger. Maybe it's the hue of the light in the room, someone suggested, and we are like photographs. One moment we are blurry, fuzzy, not discernible, underdeveloped. Then the light changes, and we are ruined, painfully overexposed.

— — — — —

Someone else pointed that we've never been in control of the light switch.

— — — — —

Even if, said someone else. Suppose we wrested control of the light switch, of the darkroom. We still wouldn't turn out to be Pulitzer-winning shots.

— — — — —

Nobody (significant) ever sneered at me and told me, "You are disabled. You cannot, will not, live a full life." In that sense I am lucky. (Most of) The people in my life told me, "You can, you will, live a full life." These are good words to say to an adult, because adults are not as intelligent as children. Adults have learned to ignore what lies behind the words, the murky subterranean, the unspoken truth. Adults have learned to push fog and murk away with a confident swipe of the hand: it is not real. It is not tangible. What's real is what you hear, see, touch. Stay focused. Stay positive.

Children are too aware to fall for that. They have not yet been trained in the art of laser-focus, of running the world through a cheese-grater again and again until it looks and feels like it's supposed to. They live in the fog; they know that the murk does not obscure the truth. The murk is the truth. The subtext swirling around and underneath "You can, you will, live a full life" came through to my 8-year-old self as clear as — well, as clear as murk. It was "You can, you will, live a full life, because we will pretend you are not disabled. We will hide it. You will succeed by pretending."

 

And for a while, I did.

— — — — — —

I don't pretend anymore, but my adult incarnation still has a number of things in common with my 8-year-old self. A while back a valued friend concluded an argument we were having by irritably muttering that I didn't need to be so 'good goddamned intense' all the time. While I can't remember what particular issue attracted my good goddamned intensity at that moment, the critique switched on the vacuum in my brain long enough to dislodge a little dust.

Watch a child struggle with a movement, a gesture, a task. He hasn't learned to bestow autonomy upon his limbs yet. So his focus is singular and absolute as he attempts the tray-balancing, the belt-buckling, the food slicing. Every knot tied is a triumph; every ball dropped a soulhurt. A child watches over his body the way a parent watches over a teenager just learning to drive. The mind can only wander for a few pleasant seconds before it is whip-jerked back to the immediacy of the peril at hand, the fraught moment.

Able-bodied adults gradually grant their movements independence and become comfortable enough with their bodies to let them operate on autopilot. The visceral urgency of childhood is replaced with a kind of luxurious cruise-control setting that, aided and abetted by modern technological advances, allows most adults to pass days at a time living largely in their heads. Challenges lose their physicality and become more intellectual, abstract. I think it is this collective loss of physical now-ness that is responsible for the deification of professional sports athletes. They live out what the rest of us gradually trade away.

The physically disabled adult never fully gets the chance to get off the childhood carousel. While growing understanding of one's body and its limitations does soothe some of the ferocity of the disabled experience as youth leaks into adulthood, that autopiloted, cruise-control setting remains elusive, unachievable. No matter how involved our theory gets, no matter how many graduate degrees we pile on, the disabled adult can never fully lose himself in the labyrinths of the mind. Try as we might to inhabit the cerebral realms of adulthood our friends appear so ensconced in, we are never fully secure when roaming these heights. Because at any moment we know we may be dragged back down from the lofty thought-world to the sharp-edged physical plane. Anything can do it — a closed door, a curb that's too high, a bag that's too heavy. To never entirely escape the corporeal for the ethereal, to always be somewhat childlike in our good goddamned intensity — that is the disabled adult's blessing and curse.

 

But it makes us pretty good in bed.

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Copyright (c) 2010 Isaac Stein



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