DSQ > Winter 2008, Volume 28, No.1

Disability Studies Quarterly Winter 2008, Volume 28, No.1 <www.dsq-sds.org> Copyright 2008 by the Society for Disability Studies

The Ins and Outs of Science Columbus, OH

I was twelve the summer a boy in my neighborhood drowned. He was five and lived around the corner from me and he died on his birthday. I played soccer with his brother and the news of his death spread down the sidelines from parent to parent like a game of telephone. A Vietnam veteran and a man of few words, my father said to my brother and me, "You should never swim alone," as if death were something one could, with caution, indefinitely prevent. My mother was more affectionate. Having known the boy, having been to all our soccer games that summer, she held us tighter that week, paid closer attention when we were outside, cheered louder from her seat on the sidelines of the soccer field.

I was, like my friends, at twelve, taken with death. I spent hours fighting wars in our sandbox with my G.I. Joes, killing off my least favorite and using broken soldiers for spare parts during explosions. My friends and I became familiar with faking our deaths: throwing our bodies to the ground and violently flailing during cap gun fights, or dodging water balloons as if they were hand grenades during military style games of capture the flag. We perfected the art of dying. War was a game that created heroes — at least we believed it could — and death, during games like these, was something a five-minute time out, a new T-shirt, or the start of a new game could fix. In the movies we watched, heroes reigned: saving pretty girls in distress, defeating armies, conquering cities with swords and crossbows. Fear, danger, death, all became obsolete elements in the lives our heroes lived.

But here was death before me, near me. Though the boy who drowned hadn't been my age, I felt more connected to him than I had any aunt or uncle I'd lost and his drowning, though notably, didn't have the same affect on my friends. He had snuck out to the pool, during a lull in the birthday party, and tried to fill the water gun he'd gotten while the other kids played in the air-conditioned house and parents were cleaning up leftover cake. I saw his five-year-old body as I dreamt about him all that summer floating in the pool one street from my house.

I had seen dead bodies before. When I was four my grandfather passed away and at the funeral I stuck my hand in his coffin thinking he was asleep. When I was nine my aunt died and all I could imagine, as we drove to her house, was how she'd taught my brother and me to play UNO, how, for as long as we'd known her, she'd been in a wheelchair or in a bed with machines around her. What I remembered most was how "juiceless" the bodies looked. How deflated. They looked to me like cartoon characters crushed by construction equipment, waiting to inflate again.

Still, I couldn't imagine the boy the way I'd seen other dead bodies. Though drowning, in my dreams he always looked alive, his body plump and full despite his motionless limbs. My mother was a nurse in the emergency room and I became fascinated by the idea of her seeing people just before their deaths. I'd ask her over and over again what death was like but she'd shrug me off, tell me that it was nothing for me to worry about.

That summer I wondered what drowning felt like. I wondered how long it took before the body finally gave up, and I really wanted to know if the boy had floated or sunk. I'd go under water and hold my breath and try to keep myself from surfacing but my lungs always burned and something inside always forced me up. I could see his parents finding him in their pool, dead. And I could hear his mother's screams, something different than the cheering she'd done at the soccer fields, something more desperate. What illuminated my dreams about the boy's death was how sudden it was, how unable anyone had been to predict it. My cousin, around the same time, was fighting cancer, his twenty-six-year-old body slowly decaying and rebuilding and decaying again. For years he was in and out of cancer wards and when we'd visit him, my mother and my brother and me, we'd have to wear masks to protect him from us. What fascinated me about these visits was how we talked about progress, how every step without a walker, every increased white blood cell count, every solid meal consumed was cause for celebration, as if death had reduced us to cheering for all the things I just simply could do. But even when he wasn't walking, or his count was down, there was the belief that he could beat death, that if we washed our hands before we went in, if we wore masks, if we avoided visiting when we were sick, that all his bad luck would turn good.

My father felt he could make his own luck when it came to death. He relied on labels that read disinfectant, anti-bacterial, antiseptic. He scrubbed the toilet seats, cleaned the counters, and washed his hands with a ferocity that germs, he believed, could not defeat. When a toothbrush was left on a counter, he yelled out into the hallways, imagining everyone was listening, about putting things in their appropriate and uncontaminated place. His hypochondria drove him, hours consumed making sure he'd taken the correct vitamins, setting appointments with doctors, feeling under his arm and around his neck for lumps. The refrigerator door rattled like a sack of marbles whenever I opened it as vitamin bottles clanked together. My brother and I mocked him when, if my mother made steak for dinner, he got up and micro waved his piece and didn't sit down with us until we were almost done. Sometimes the meat looked like road kill, steam rising off it in large waves, the fat around the edges crispy and shriveled. I couldn't imagine how he ate it but if we asked he talked about mad cow or other diseases borne in undercooked meat and he heaped on salt like it was a cure seemingly ignoring what it might do to his heart.


The summer of the drowning I went swimming almost every day at my best friend, Gordon's, house. We spent hours shallow diving in the five-foot deep pool, playing Marco Polo with the solar cover on so you'd have to burst through it to get air, tight rope walking the rails of the pool when we were "fish out of water." My friends were fearless, setting up ramps and launching their bikes into the pool, building platforms to dive from, screaming until their voices were hoarse and they spoke with whispers. We thought that bigger stunts would mean bigger fun, would be a way of proving who was a "pussy" and who was not. My buddy's mother always yelled at us. A retired dean, she had no patience for boys, and her son had become a failed product of that impatience. "Get down from there," she'd yell. "You're going to break your neck!"

When school started I went to the library and did research on drowning. Our swimming days, for the next eight months, were over, but the boy who'd died that summer was still with me and I needed to know what it looked like. At first glance I was taken with statistics. I read how drowning is one of the leading causes of death for boys under fourteen, how 6500 people drown in the United States every year, how it is estimated that ten percent of all children ages 5 and under "experienced a situation with a high risk of drowning." What was better were their explanations of situations. It made me, though I felt like I shouldn't, want to laugh. "PCP users frequently lose their sense of direction as well, and drowning is a major cause of death for them." Things like this had me laughing to myself all day in class. I imagined myself on an especially big sugar high, "too much soda," my father might say, lurching toward a pool with no control over my body. I wanted to share my drowning facts with my mother and my cousin as we sat in his room later that night but he was having an especially good day and I didn't want to chance ruining it. He'd gone the whole day without an oxygen mask and had colored with his son in their favorite coloring book.

But there was science — explinaning the finality of it, the pain I felt in my lungs when I was making myself stay under water — keeping my curiosity alive. That burning, that need to reach the surface again is called air hunger and I found out that it had less to do with oxygen than it did with carbon dioxide: "the urge to breathe is triggered by rising carbon dioxide levels in the blood rather than diminishing oxygen levels." And there were terms to learn: asphyxia, hypoxia, brain damage, air hunger, suffocation, death. The books I looked at had pictures, which appeared fake, of kids lying at the bottom of pools with their arms stretched out, their hair floating around like sea weed. Those books told me that it would take five to eight minutes for my body to go limp (unconscious), for brian damage to set in, for me to be dead.

At twelve I still had a disregard for this science. Because of my new found obsessions with death I found comfort in sledding down "suicide hill," walked without caution on thin ice, rode my bike without a helmet as if I were daring myself, placing myself against death. Science was what explained my cousin's evaporation; it was what allowed them to implant a shunt in his arm so they could run IV's without having to open it over and over again, it was his bald head, a head his three-year-old son had never seen with hair. Oxygen and carbon dioxide and white blood cells: I thought of these things as objects I could trade like baseball cards. The way I'd pick at scabs to watch them bleed, the way I'd rip off band-aids to show off new scars, the way my young body twisted and contorted while my friends and I wrestled in our front yards. There was something innocent and stupid about being a twelve-year-old boy, something science wouldn't allow.


We could see death all around us. The winter after the boy drowned and before my cousin got really sick, six of us went to the woods to sled. Marching through the deep forest on a path cut by sledders, we threw snowballs at one another. We came to an opening, the foot of the hill we'd planned on sledding, and even before we saw the crowd we could hear the screams. A boy our age had veered off the path, run headlong into a tree and broken his neck.

That night, after my friends and I got home from sledding, we sat around the television and waited for a news report about that boy. "Do you think it will be on?" Gordon asked. "Of course it will, dumbass," Mike replied. We were all secretly concerned but we made light of it. "I bet it looked like this," Gordon said, playing out the scene as if he were headed for the tree. His feet faced forward, his head bent low, but always at the last second he'd spring from his sled, roll dangerously close to the tree, but elude it. "That tree would never have gotten me," He'd said.

Somewhere inside, I hated that boy. He'd ruined our day, closed down the hill, and what's more was, unlike the boy from the summer, I could see that this kid was important to my friends that his injuries and possible death scared them. We were all hoping he'd do to death what Gordon claimed he would have masterfully done if faced with that tree.

When we found out, a few days later, that the sledding kid was dead, we were dejected but only in the way a boy might be after losing a bet. It remaind with us but, like all good gamblers, we laughed it off. We may have even talked about it, before we knew what had happened, like we were bookies taking in Vegas size money. "I bet ya he never walks again." "I bet the kid's already dead." When we finally heard the news, he was dead, we never mentioned that kid or that day again. Because, it was for my friends and me the first time we realized we'd, someday, be dead.

It was a winter day like this, a few weeks later, when I'd be at an aunt's house and find out my cousin Tommy had cancer again. My mother made it sound like it was nothing. Not that she didn't acknowledge the severity of it but she explained, to my brother and me, that it was the same cancer Mario Lemiux, our favorite hockey player, had had and that he had overcome it. Mario Lemuix was going to be in the hall of fame. Mario Lemuix had won two Stanley Cups.

Tommy's son was walking since the last time I'd seen him and Tommy was bald now, having gone through his first round of chemo treatment. Still, he'd go into work the number of days required to get his health insurance, and when he thought I was getting out of line he'd yell, "Jonathan."

Most of that night at my aunt's is forgotten, pushed out by Christmas presents, turkey, the women at the kitchen table, the men in the basement watching football on TV. All I can think to remember now is my cousin's face, how he gritted his teeth and looked over at me and said my name. I can see the light of some candles or the Christmas tree shining off his hairless head. I can see him smile when I say, "I'm going to cut my hair just like you."


Tommy, despite his sickness, was always asking me about my future even when I was growing increasingly less certain about his.

"How many girls are you dating these days?"

"How is hockey coming along, you going to be a pro soon?"

And he always made sure to heckle me, telling me how I was goofy like my father, reminding me: "with those glasses and that hair cut you look just like him."

Sometimes during visits we walked, my mother and me, with him, doing his daily lap around the desk in the center of the unit that held the nurses and the sinks and the masks. My mother was confident during these visits despite her knowledge as a nurse always being tested. One day, during our second lap, he asked, "What do you think about this bone marrow transplant, Aunt Joan?"

"It is defiantly something worth considering. I think, with your brother donating there is a good chance."

It was hope, this science, but in the ward, where one door had to close behind you before you could go through the next, where each patient had his or her own room sealed off from the world, science meant more to me than it would at school, when we were dissecting animals, when we were learning about genus and species, when our science teacher talked about decomposition.

What began to consume me, more and more, during that winter was science, was what science thought it could determine and what it simply couldn't. For example, they could tell Tommy where his cancer was, they could tell him the exact number of white blood cells he had on any given day, but they could never explain why Taco Bell was the only solid food his body could keep down. I joked, to myself, that he was a circus act. My ads read: Not for the Faint of Heart: The only man in America who can eat Taco Bell every day and still look like a cancer patient. Come see the only man in America who can eat Taco Bell and not get sick. I wasn't trying to be cruel, and had I said these things to Tommy he would have known what I meant. I knew we were both confused, those months before winter hit, about the ins and outs of science.

My father was a firm believer in medicine, trying to outguess his body, trying to remain three head colds or a terminal illness ahead. Medicine was a tool that promised my father his chance to elude death. And my friends and I, in our naive way, believed that our bodies would naturally do something akin to his miracle cures, his Icy Hot, his supplements that warded off injury and sickness. We based our knowledge on all our "near death" encounters — whatever that meant — and placed our bodies at the mercy of luck. We even considered, for some time, that we were invincible, like our heroes; we truly thought that the lives we knew would stretch out before us like a long and endless road. But, what the summer and then the winter had shown me was how naïve we were to think this.

I saw, when we were sitting there with Tommy, his catching us up on a day or a week's worth of events, that medicine could be as confusing as those science textbooks, as uncertain and unpredictable as a five-year-old boy drowning in a pool on his birthday. Tommy's body was a medical mystery fluctuating over the course of five years like lines on a seismograph. Around it, in swimming pools and classrooms, at the dining room table, was my father burning hamburgers, was my mother calmly answering questions, were my friends and I flirting with death. It wasn't until the second bone marrow transplant, until his doctors found a hole in his esophagus that I stopped believing Tommy's disease was like one of my father's steaks, something that could be burnt away, that Tommy could be salted back to life.

All I could think about the day my cousin died was chocolate ice cream. On the ride home from the hospital a memory I had from weeks earlier flashed through my head, a story Tommy had told me. He had, one day, had a craving for ice cream and in frustration pulled himself from his bed and made an attempt to flee. As he told it I could see his feet gliding over the tile floor. I could picture him dragging those IV's behind him looking like a poorly conceived science project. I could hear his voice undulating in irritation, telling the nurse, "I can go if I want to," sounding like it had that night at my aunt's when he was continually yelling my name. He told it with a smile, laughing at himself, and there was something in the telling that invited me to laugh along with him.

And now, being twenty-six myself, I've got ice cream on my mind and I want something more for him. As I imagine it this time I'm cheering his escape. After he's made it through the doors and by the distracted nurse there is nothing but a smooth elevator ride between him and the street. He stands there, once he's reached the ground floor, his feet in slippers, his sweatpants loose around his waist, looking down both sides of the street before him. And he moves toward the end that looks most promising, trying to remember where his room would be, where he'd seen that grocery store from his window. As I imagine it I see him weaving in and out of traffic, moving at a snail's pace, drawn on by a ferocity that I can measure only through the movement of his arms as they sweep past his legs. And they will find him, hours later, his back up against a cooler, empty containers at his feet, his face, like a child's, covered in chocolate.

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