Autobiography of a Disease

Patrick Anderson

• Éditeur: Routledge
• Année: 2017
• ISBN:
  9781351720991
• Édition: 1
• Sujet: Medicina
• Sous-sujet: Malattie infettive

Autobiography of a Disease documents, in experimental form, the experience of extended life-threatening illness in contemporary US hospitals and clinics. The narrative is based primarily on the author's sudden and catastrophic collapse into a coma and long hospitalization thirteen years ago; but it has also been crafted from twelve years of research on the history of microbiology, literary representations of illness and medical treatment, cultural analysis of MRSA in the popular press, and extended autoethnographic work on medicalization.

An experiment in form, the book blends the genres of storytelling, historiography, ethnography, and memoir. Unlike most medical memoirs, told from the perspective of the human patient, Autobiography of a Disease is told from the perspective of a bacterial cluster. This orientation is intended to represent the distribution of perspectives on illness, disability, and pain across subjective centers—from patient to monitoring machine, from body to cell, from caregiver to cared-for—and thus makes sense of illness only in a social context.

Part I

1

He was abed for more than a week. It seemed like years—decades even—but in reality it couldn’t have been more than a few months: a fall, winter, spring, early summer wasted with the business of getting well. His long, slow gasps; his murmured pleas for release from the pain that kept him fixed to the bed they’d pinned him to; his quick glances up to find that his mother—real or imagined he didn’t know—was still hovering over him: these defined his days, as a tomcat defines the alley in which it prowls.

He awoke as if from a very deep sleep. The first time he awoke, it was to the image of his family. They were standing above his hospital bed, but in his haze they appeared to be in the front garden of a lush hotel. His father and stepmother stood, a fountain glimmering behind them, with arms interlocking. They looked askance, just off to the left of where he was sitting. His brothers and sister leaned in various postures around the green, looking at the sky, picking something off the ground, or smiling in some silent conversation. “Can you see us? Patrick, can you see us? Do you know we’re here?” his stepmother said, her soft southern intonations the immediate comfort of, say, a stiff drink. “Jonathan, he can’t see us.”

His father, Jonathan, was silent, and looked clenched in seizure. Jonathan was the pastor of a small country church just off the Mississippi delta. He had a flair for the dramatic, but now his considerable talents at gesture and metaphor failed him. He was only here, now; the terrible stories of his childhood on an arid farm, typically boiling just beneath the surface, were miles or years away. There was only this: the sight of his oldest son—the son he idolized least, but understood most—lying on a gurney, surrounded and impaled by tubes, catheters, and IVs. There was only this. And he, Patrick, registering his father’s presence in the periphery of his sightline, he began again to fall asleep.

“Keep,” he started to say.

“What’s that? Patrick? What did you say?” His father leaned closer.

“Keeping.” This was all he could manage before he was out again, slipping farther away from that pleasant, almost comforting scene before the garden-mirage.

2

“No good will come of keepin’ all this mess packed up in a box. Take what you want, and don’t get ornery if somebody wants to take it from you somewhere down the line. Keepin’s only good for givin’.” Patrick’s maternal grandmother, oozing Appalachia, murmured this one fall while they were looking together through her beat-up bridal trunk, now full of pictures—old photographs not sealed in frames or albums, just thrown into a makeshift pyre of people and places forgotten. He found a picture of his mother asleep on a bunk when she was fourteen. It was the only time he’d seen his mother sleeping. So he put the picture in his pocket, took it home, and hung it near his bed.

There was also, in that trunk, a picture of his mother at eighteen, the head majorette at her high school. She was all high boots with frills, tall pointy hat, arms akimbo in some pose as her baton spun twenty feet in the air and plunged back down to the crook of her elbow. She was all south Florida high school diva with a tan, white blonde hair, and sass like nobody’s business. When he was a kid, and his parents were still embroiled in their bitter, ridiculous marriage, they lived in a cramped apartment for years. Then they lived in a house. In the basement of this house was a tiny laundry room, the only room he and his brother were banned from entering. It was his mother’s private retreat, and she would spend hours there with the door closed, folding sheets and socks and shirts. Patrick would sneak up to the door when it was closed, and listen to her as she faintly, faintly hummed some song he didn’t know, or talked to herself, working out the intricacies of some conversation she was going to have with someone he’d never met. He would try to imagine what her life was like when she was away or the others weren’t home. At the time, he thought she was a beauty queen. She was a princess. She was the face and body and soul of love. He wanted her to be his whole world, and the thought that she had her own life to lead worried him.

Hanging on the wall in the laundry room was a large round case, vinyl and old, with her name painted in fancy cursive across the top. They all knew it was some kind of secret, and they knew it hung there for a reason. One day he snuck in and opened it to find one of her favorite batons, the kind that’s affixed to a hula-hoop. He wondered if she stared up at it while doing laundry, remembering what it was like to be eighteen, living on the beach, taunting all those south Florida boys with her dazzling routines and string bikinis. He wondered if she considered beating his father over the head with it, then taking the car and her baton and driving away forever. He wondered if, when they were away, she took it out to the backyard and practiced twirling it, spinning herself into a frenzy before turning to face her imaginary crowd with a Miss America smile, catching the baton just before it struck ground. What did this mean, he wondered when he was a kid. Did he have secrets too? Would he keep them until he was old? Would he die with them? And where could he get one of those batons?

When his mother left his father, she didn’t beat the man over the head with her baton. She just drove to the other side of the city, leaving almost everything they’d collected together in that old house. She didn’t want anything he’d ever touched, not the furniture, not her clothes, not his money, nothing. She did take Patrick, but she made him take a long shower before he got in the car. She also took that old round case, and she hung it in her room in their new apartment. It was the only thing on her walls for a while, until gradually it was surrounded by paintings of beaches and photographs of her new lover. It disappeared entirely one day, and he didn’t see it again until ten years later, when he was visiting her in a new town and she was giving him things to take home. They played his grandmother’s old game, sitting around the bridal trunk, looking at his baby blanket (the one with a forlorn football embroidered onto a corner), a toy doctor’s kit he’d had as a kid, and pictures of their little family before the split. They looked miserable in those pictures—especially his mother, whose body seemed to be stuck in a permanent clench. At the end of the night, they found the baton case, stuck way back in a box somewhere. His mother grew quiet, looked at it for what seemed like a year. She unzipped it slowly, pulled out the hoop baton, and handed it to him. “You ever learn how to twirl one of these things?”

“Keepin’s only good for givin’,” she might have said; but at this point in her life, his mother had noticed how closely her body was beginning to mimic her mother’s, and she was desperate to fend off any further resemblance. Instead she smiled, and left the baton with him as she took off for the graveyard shift. He was rocked by the sentimentality he’d never before seen in her. He felt, for once, inside—him: the kid forever trying to fit into cliques that wouldn’t have him, learning over and over how to temper resentment with creativity, how to turn rejection into love.

3

The second time he awoke, the Unknowns were huddled over him, grouped up in an urgent conference, moving slowly like dancers. All he knew was that there was something down his throat: it sounded like rubber but felt like steel. Later he would learn that this was one of the many devices they used to track the bacteria’s progress. In fact, when he awoke for that second time, they did not yet know that they were there, that they were the cause of his sudden collapse.

He did not respond to the shock of his position with anything more than a quick intake of breath (stifled, of course, by the device that blocked his airway) and a frantic looking-around. His eyes darted for an instant from left to right and back again, before settling comfortably, almost familiarly, on the Unknown closest to him. Within minutes, the sedative dripping into his veins was intensified, and he was asleep again.

The third time he awoke they were there again, the Unknowns, but now sticking needles in his eyes. This time he awoke with a start, and was paralyzed by what he saw: the Unknowns wearing machines strapped across their foreheads, ticking and humming like little living things from a science fiction film. These machines had eyes of their own: bright, bulbous lamps shining beams that seemed to cut directly into his brain. He felt someone gripping his hand as the needles were withdrawn. He heard a voice telling him not to move. He pulled against the straps tying his wrists to the bars of his bed. The Unknowns told him to turn his eyes to the left, and then to the right, and then towards the ceiling, and then towards his feet. He heard their silence at what they saw, and he knew there was no good news. Something was wrong.

He directed himself to think backwards, and was confronted with a very deep blank. He could remember nothing. He tried again, thought harder. And something began to materialize: a conversation with a friend. He was there, in his small apartment, sitting on an overstuffed couch. He was hungry. But every time he tried to stand and make his way into the kitchen, nausea swelled and he relaxed back into the cushions again. The telephone was ringing, and he could not reach it. It rang again. And then the knock on his door. He remembered turning to look, to see if he could will it to open. And remarkably it did. Someone was coming inside, someone he knew. She was smiling, calling his name. “Patrick?” He remembered his name. He thought about the sound of his name, tried saying it back to her to feel what it did on his tongue. He tried again; “Pat” was as far as he got before he noticed her again, saw that her face had fallen, her eyes were wide open—like a cat’s, he thought, like a cat’s eyes when hunting a toy. She was running from the door to the couch. She dropped something, and he laughed at the sound that it made on the floor: a clang, a silly splash like something out of a cartoon.

The Unknowns noticed he was smiling. They took this as a compliment, that they had managed to mask his pain with pills. One of them smiled back, said “Patrick. You’re going to be all right. Just hold still.” But he was miles away, and this voice never reached him. He was miles away, playing back those splashes and clangs, watching his friend run comically across the room, her face a caricature of concern. He slipped even further back, to the Saturday mornings of his childhood. He was never one for the new animation. His favorites were always the oldest cartoons—Mickey Mouse, Bugs Bunny—played like apologies on the television channels that couldn’t really compete. He remembered the shag wool on the floor, more comfortable than his bed. He remembered the brick façade of the wall. He remembered the tiny screen in the corner of the room, set opposite the fireplace, dressed with a doily and silk flowers. Irises, he thought. They were irises.

“We’ve lost him.” The third time he awoke, this was the last thing he heard before falling asleep again.

4

When Patrick was young, his mother’s mother lived in a small town in North Carolina. Every year at Thanksgiving, his family would make the long drive from Birmingham to his grandmother’s house, where they were treated like strange visiting royalty. As they drove through the Blue Ridge Mountains each November, he would watch out the window at the shapes the hills made against the darkening autumn sky, and wonder what kind of miracle it took to make them look like reclining bodies. They were immaculate, far more beautiful than anyone he had ever seen sleeping in real life, and they stood in sharp contrast to the lazy, rolling hills of Birmingham. These mountains hid secrets from the drivers who carelessly passed them by; and as the family car made its strained way slowly through their mysterious paths, his father would forget where he was, and hum or occasionally sing along with the station he had found on the radio tuner: Ink Spots, Lettermen, Shandrelles. The soundtrack for their slow ascent up into the Appalachians was doo-wop, unchained melodies, early R&B. They covered their ears with those sounds, peeking out from under the tin roof of the battered old Chevy, hoping they wouldn’t be swallowed up into the endless forests and bottomless caves that make those mountains feel like exclusion and like home, all at once.

When they arrived, his mother’s mother—though she had clearly been waiting for hours, possibly even days, in advance—would be making herself busy with some ordinary chore. Typically, her famous peanut butter cake would sit temptingly on the kitchen counter; his brother and he would sneak peeks and, when they were brave, short, fast tastes of its sinful icing. His grandmother had always been a collector, and every year she found some new icon to decorate her life: first it was lemons, then roses, then hummingbirds that shone proudly from the corners of kitchen towels and sat in repose on every window sill. The trick was to guess what she would pick next, and no one ever could. There was no logic in her movement across phyla and species, just a simple grace that shifted her attention, her love, from fruit to flower to beast.

His grandmother was also a nurse, a fierce one, who worked in the local hospital and, for a month each year, on the streets of Calcutta. She would return from India every spring with tiny gifts—sandalwood camels, brass frames, incense—and a box full of slides. These were his introduction to the world outside himself and to the world of travel: blurry images of brightly colored saris and dusty roads, ramshackle homes filled with grinning children, aerial shots of the dense cities of South Asia. What he felt while looking at those images, shining down from the wood-paneled wall of the dining room, was a kind of vertigo, his body spinning, spinning him out of itself, his eyes losing focus, his feet straining to reach the ground that gave them rest.

At the far end of his grandmother’s kitchen was a forbidden door that had been nailed shut into its frame, and lined with bolts and chains that made opening it a horrible inevitability. The story of the door was this: long before his grandmother lived in this house, a second-story porch had been built off the kitchen, overlooking the verdant hills that surrounded the property. At some point, that porch had crumbled, but had never been rebuilt. What remained was this door that led nowhere—or rather, this door that led to the nowhere of a deep, dark fall and a painful collision with the unforgiving ground below. As kids, he and his brother used to tempt fate by prying at the door’s edges, hoping for a glimpse of their own vertiginous deaths. Or they would hide in the woods outside, staring through the trees at the outer side of the door, which was somehow more terrifying than its inside face. They imagined the unfortunate others who must have come before them, who must have tripped through the door and fallen to their doom, who must now be staring back at them in their ghostly forms, tickling their goose-bumped skin with long, airy fingers and sickening, lanky toes. They’d run screaming back inside, begging for the relief of their grandmother’s hugs and the medicine found only in an oversized slice of her unbelievably scrumptious cake.

That feeling of loss, the one that came tumbling into him when he peered at his grandmother’s slides, and when he imagined his body slamming into the mud below that door, stayed with him, in its hidden form, long after he was a child, long after his grandmother moved from her quiet mountain house to an even quieter cabin on a tiny lake not twenty miles down the road. That feeling of loss, the one you can’t even approach with words, became the source and the limit of all his fears, of all his deepest wants.

5

What unbridled passion it must have taken to build this town, where against all odds these buildings and streets pack a proud and angry slope that rises furiously from bay to peak. On certain days in December, in radical disregard for the supposed pure and simple perfection of this place, snow falls in the hills, reminding all who live here that they are visitors, not exactly welcome, and destined not to stay for long. On other days in September, the ground will shake with such vengeance that everything they’ve built shifts, if just an inch, as though settling into a long and fitful sleep. What oblivious peace it must take to settle here.

The fourth time he awoke he was alone, his bed turned towards a window that covered an entire east-facing wall. He could not see completely, not as he had before; and what he could see was blurred just enough to make the image seem flawless, made perfect by its indistinct and hazy lines. At first he was not sure what he was seeing: fever dreams had taken away his faith not only in his ability to look, but also in everything that presented itself to be looked upon. What just yesterday appeared to him as an evil, crouching man was now nothing more than a lazy sling-back chair; where before he saw the silhouettes of family members long-ago dead, he now saw shadows cast back to the wall through the yellow shade of a table lamp. He turned his eyes to the window, saw in fractured, blurry pieces th...