Writing fiction began for me as a side effect of illness, a way to live beyond my body when it became clear that this new, altered body would be mine to keep. A way to fill the hours that had once been occupied by music. A way to achieve the kind of closure that, once, I’d found through prayer. Years later, a writer I admire would tell me of awakening in the hospital after a car wreck at the age of eight, and thinking, with absolute clarity: “Now I can be anything, and I want to be a writer.”
On January 1, 1988, I made a New Year’s resolution to write for two hours, three times a week. Even now, twelve years later, I cannot explain why I made this particular resolution and not another—to become a painter, say, or to compose an opera. I might have taken up singing. I might have found religion again, joined another church. I might have done any number of things that would have been more, as I would say now, in character. My adult fiction reading had been limited to grocery store romances, the kind with half-corseted breasts peeping through the cover. The only sustained writing I’d done, aside from college papers, were the poems I’d done, aside from college papers, were the poems I’d scrawled whenever I fancied myself miserable or in love. The latter, which I’d collected in a cloth-covered notebook, had mysteriously disappeared during my first semester at the University of Maine. Choice excerpts had resurfaced, however, on bulletin boards across campus, and for a while guys I didn’t know kept calling to ask if I wanted to come over and see their rooms. This had left me feeling somewhat uneasy about poetry. Occasionally, I’d had a vague idea about starting a novel, but I figured that writing—like falling in love, or saving money, or working crossword puzzles—was something I could always do later in life, when I got older and less active, when I needed something I could do sitting down.
On New Year’s Eve, 1987, at the age of twenty-three, it occurred to me that this was exactly my situation.
During the eighteen months I’d been on medical leave, I’d made countless similar resolutions. I’d planned the various trips I’d take as soon as I got well—to the Australian outback, to the Galápagos Islands, to Anchorage, Alaska. I completed a correspondence course on beekeeping, dreamed of my own hives on a little plot of land in Maine. I researched llamas and ostriches and beefalo, considered starting a farm, or a bed-and-breakfast, or both. From time to time, I’d scrap all these ideas in favor of living on a sail-boat. I wrote away for information on boat-building schools and sailing academies; I studied the Chapman guide to seamanship, savoring words like ketch and yawl. But in each of these daydreams, I was able-bodied again; I’d never seriously imagined a future in which I was not physically fit and free of pain. Even after getting my power chair, after learning to drive with hand controls, I did not consider myself disabled in any permanent sense of the word. I was biding my time, waiting for the day when I’d see the right doctor, find the right medication, make a full recovery.
As a result, I experienced my day-to-day life with a curious sense of distance. It was if I was watching myself, or a person like myself, someone who was holding my place in the world, keeping up appearances until my real self could return. The final semester I spent at the University of Maine, completing the anthropology degree I’d settled on during my medical leave, only reinforced that feeling of disconnection, of being both me and not-me. The people I’d known had all graduated and gone. The places I’d most loved—the Northeast Archives of Folklore and Oral History, the weekly vegetarian cafe, even the dorm where I’d once lived—were all inaccessible to wheelchairs. As soon as the snow started to fall, campus plows buried the curb cuts so I couldn’t get to the cafeteria, to classes, to the health center where I was supposed to be working with a physical therapist. The university’s solution, instead of plowing the cuts, was to have other students bring me food, books, and missed assignments. Mornings, I looked out my window at a campus that might as well have been a photograph. When I met with the university president to discuss the problems I’d been having, he bluffed and blustered like a football coach, urged me not to give up, reminded me that when the going gets tough, the tough get going. Then—to illustrate his point, I suppose—he hustled me out the door.
Still, by the end of December, I had my degree in hand. In addition to this degree, I had also acquired a boyfriend, a nice and decent boyfriend, who no one in my family trusted, least of all me, because if he really was such a nice and decent boyfriend and not some weirdo with a Florence Nightingale complex, then why was he going out with me? I couldn’t walk more than a few steps, I couldn’t use my hands very well, and I was in so much pain that I couldn’t concentrate from one minute to the next. If I picked up my car keys, I might manage to put them in my purse, but it was just as likely I’d find them, hours later, in the freezer. Dialing the phone, I’d forget who I was calling and have to ask, Who is this? The pain was worse at night; I lay awake for hours on my flat dorm mattress, pillows wedged between my knees so my legs wouldn’t press against each other. Even without a bed frame, the mattress took up a third of the room. During the day, I navigated by pulling myself backward across the floor on my butt, because the space the university had assigned me was too small for the Death Star to maneuver.
This was how I’d greeted my nice and decent boyfriend when he arrived at my door to pick me up for our first date.
At first, I was nervous, but I forgot all about that when I realized I couldn’t remember his name. We had tickets to a campus production of Ain’t Misbehavin’, and on the way over to the auditorium, I sneaked glances at his shoes (high-topped tennies), his clothes (what we called granola, a cross between hippie and grunge), his face (high cheekbones, wide gray eyes), hoping that something would ring a bell. Distracted, I veered toward a curb cut and accidentally rolled over his foot.
“It didn’t hurt,” he said. He was limping, but just a little bit.
When we got to the auditorium, we were hustled into “special seating,” a row of folding chairs lined up behind the affixed seats. An older man with his foot in a cast was already there. Clearly, he thought my nice and decent boyfriend was a paid assistant. Ignoring me altogether, he fixed my nice and decent boyfriend with an oddly imploring gaze and asked, “Have we met before? What’s your name?” Jake’s answer solved one problem, but established another: the man would not stop talking. Each time Jake turned back to me, the man would ask him another question, and these questions were becoming increasingly personal when the lights dimmed and the curtain rose and the singing and dancing began.
I’m not sure how much time had passed before I noticed that the man had put his arm around the back of Jake’s chair.
I waited for some reaction on Jake’s part, but there was none. True, his expression seemed a bit peculiar, as if he were holding his breath, but he didn’t move away. Suddenly I felt sad and tired and confused. I’d thought this was a date—Jake had been appearing, accidentally on purpose, in the lobby of my dorm for weeks—but now I wasn’t sure. For all I knew, hanging out with crippled women was a great way to meet guys, like taking a dog to the park. Besides, I’d suspected his motives all along. He’d just felt sorry for me. Or worse, he was doing this on a dare or a bet. Or even worse still, he wanted to tell me all about the healing love of Our Lord Jesus Christ. In September, after I had eaten alone in the cafeteria for weeks, a girl I recognized from one of my classes had sat down beside me, said hello, and then told me sweetly and brightly that if I came to her church and said, “I accept Jesus Christ as my savior,” I could throw away my wheelchair forever.
I started to laugh, I couldn’t help it, thinking about what a wheelchair like mine had cost.
“Don’t you think,” I asked the girl, “we should donate it to the VA instead?”
I saw the man’s hand, pale as a dove, take flight in the darkness. Down and down it came until it landed on Jake’s thigh.
How grateful I am, now, to that odd, lonely stranger. Without his persistence, I doubt Jake would have touched me. I certainly wouldn’t have touched him. And if we hadn’t touched, we would have been forced to rely on words alone, and words alone would have failed us miserably and completely. We would have made stilted small talk, said good night, gone our separate ways. Instead, in a single fluid motion, Jake scooted his folding chair away from the man and took my hand firmly in his.
It was a warm hand, rough and broad, the palm once and again the size of mine. The weight of it stunned me. An anchor had fallen into my lap, into my life, and I held on for all I was worth.
The man stared at us—at me—with disbelief. Then he hobbled away, faceless angel, into the immortal light of our past.
At intermission, still holding hands, we left the auditorium and wandered across the campus. It was late October, almost Halloween. The night sky was glossy, swollen with a harvest moon, and the sidewalks shouted with leaves. Back at my dorm room, we carved a jack-o’-lantern, and drank from the bottle of Irish whiskey Jake happened to have in his coat pocket, and told each other pretty much everything we’d need to know for the rest of our lives. Just before daybreak, he put on his coat and carried the jack-o’-lantern outside, where he left it, burning, in the icy fork of a tree. From my window, it seemed to be suspended in the air, grinning madly, a rogue miracle. It caught me off guard. It burned through my detachment, stung me with my own loneliness, and longing, and hope.
So now I had this boyfriend. I had parents who would have given their own lives to salvage the spectacular wreckage of mine. And, unbelievably, I had been offered something of a future. Just before graduation, one of my professors took me aside and told me that he needed a graduate assistant to help with a study of plasmids, the DNA that occurs outside the nucleus of the cell. He would, he said, take care of all the paperwork. By January, I’d be a full-time graduate student, with a reasonable stipend and health benefits. In five years, I’d have my Ph.D. in biology. I’d be qualified for a good lab job.
When I told my parents about it, they were beside themselves with joy. I shouldn’t have told my parents about it.
As graduation loomed, I grew more and more uneasy about the assistantship. Clearly, the professor had made an opening in his lab especially for me, and there was such compassion in his eyes whenever he spoke to me that I knew I couldn’t bear working for him, couldn’t endure such kindness. Besides, plasmid was an ugly word. I couldn’t say it aloud without feeling I’d stepped in something awful.
At the end of the semester, I refused the assistantship.
I enrolled in a creative writing class at the University of Southern Maine.
Jake already had a job in Portland, working for a small advertising circular. Soon after we moved to the little town of Saco, I began applying for a series of jobs I wouldn’t get.
“That position has just been filled,” said the woman behind the desk at the hair salon, and she took the RECEPTIONIST WANTED sign out of the window. the next day, driving by, Jake and I saw that it was back. By now, we were not surprised. In the past, I’d worked at a variety of odd jobs—receptionist, salesclerk, waitress, theater usher—but it was clear that I was not going to be hired for even those positions I could physically handle. My anthropology degree had left me unqualified for any salaried profession I could think of. My musical training was useless to me now. Why hadn’t I majored in something useful? How was I ever going to support myself?
Our ground-floor apartment had electric heat and sat directly on a concrete slab. Though we kept the thermostat at fifty-eight, our electric bills were nearly twice what we’d budgeted for groceries. As soon as the sun went down, we went to bed and stayed there, reading and talking under a down-filled quilt Jake’s mother had given us for Christmas. All night long, trucks screamed past on I-95, headlights slashing the darkness over our heads. Mornings, we blew frost angels at each other over the breakfast table. We had looked at dozens of other apartments, but this had been our only option. It was the only place we’d found with a level entrance for a wheelchair.
Neither of us had health insurance. I didn’t have a doctor or a physical therapist. When I finally ran out of anti-inflammatories, I didn’t get a new prescription, and I didn’t go back to the clinic for cortisone shots. Oddly enough, I found I didn’t feel any worse than before. In fact, my stomach felt better, and without the constant irritation of physical therapy, I was able to stand up longer, to shower without holding on to the wall, to crutch between the bedroom and the kitchen instead of relying on the wheelchair. There were times when, sitting quietly, I’d realize I wasn’t in quite as much pain. I could hold a full cup of tea, lift it to my mouth again and again; I could balance an open book in my lap, turn a chapter’s worth of pages. And, with braces, I could type fairly well, using my thumb and index fingers.
Three times a week, two hours at a time, I bundled up in the Christmas quilt and sat—writing and resting and writing—at the desk Jake had rigged for me out of cinder blocks and an unfinished wood door. There I tried my best to shuck off my body, determined to abandon the present as well as the past, to enter into a whole new world that had absolutely nothing to do with me. I was going to write fiction. I was going to get famous, make a lot of money, pay off all my debts. In the process, I would become somebody else altogether, a person I’d invented, successful, sophisticated, interesting.
I decided to hone my writing skills on a short story or two before diving into a full-fledged novel. The trouble was that I couldn’t recall ever reading a short story I’d liked, though there’d been plenty that had left me cold, or annoyed, or feeling like the little boy in the tale “The Emperor’s New Clothes.” Was everybody really seeing all that stuff about symbolism and metaphor, about the universal human condition, or were they just pretending it was there, afraid to admit they disagreed? I disagreed. My English classes had inevitably centered on stories about safaris, or wars, or jolly old England, and though I could accept that such conditions were human, they were not universal, and they were not mine. It seemed to me that my life, like the lives of the people I knew, was something that happened on one planet, and Great Literature was something that happened on another, and that these two planets—though briefly visible to one another every once in a great while—had amazingly little in common. Reading men like Hemingway and F. Scott Fitzgerald made me feel as if some vast, amorphous god were taking an eraser to my life, my individual beliefs and concerns. In the margins of Henry James’s The Golden Bowl, I’d scrawled, “If these people had to work for a living, it wouldn’t matter whether or not the stupid bowl was cracked.”
So why, then, were my own first stories clumsy imitations of James, of Fitzgerald, of the very writers I’d most fervently disliked?
I wrote the way I thought I was supposed to write, setting my stories in exotic locations, rendering them in highly Latinate diction. Because who would want to read about people who sounded, well, average? About people who talked like my family, like me? My characters didn’t merely roll out of bed, head to the bathroom, and wash their faces in the morning; they arose and adjourned to the lavatory to perform their morning ablutions. The men hunted and smoked cigars; the women wore silk and sipped Pernod, which I couldn’t pronounce and had never tasted. Everybody had long discussions about the pointlessness, the meaninglessness, of everything. People “just shrugged” a lot and said, “I don’t care.” Then they committed strange, violent acts. Narrators were particularly inclined to kill themselves when the story was written in the first person.
Needless to say, all of my characters were able-bodied and beautiful.
My creative writing teacher was a gentle person. After reading one of my early stories, she said that, sometimes, she read things which were so painful, so disturbing, that she locked them up in a part of her brain where she knew she’d never encounter them again.
“I don’t know what else to write about,” I said.
“Write about what you know,” she said. “Write about things you care about.” She told me that Flannery O’Connor once wrote that anybody with a childhood had enough material to write good fiction.
“Who is Flannery O’Connor?” I said.
The night after I first read O’Connor’s story “Good Country People,” I dreamed that she and I met for lunch in a school cafeteria. In life, she’d struggled with a mysterious ailment that eventually was diagnosed as lupus; it killed her in 1964, the same year I was born. In my dream, she was on crutches, and I was in my power chair. Her hair was flaming orange and teased into a tall beehive. I followed her through the line as she piled food on her tray, speaking irritably to the servers, pointing at what she wanted. Without looking back to see if I was coming, she picked up her tray and crutched—gracefully, without dropping the tray or spilling anything—toward an empty table. “How did you do that?” I said, stunned. She made an impatient gesture with her head, as if to say duh, then started in on her lunch. My manuscripts were stacked beside her plate, but she didn’t seem to notice them, and when she’d finished eating, she stood up to go.
“Aren’t you going to tell me what you think about my stories?” I said.
O’Connor waved her hand dismissively at the manuscripts. “Yes, yes, yes,” she said. She was already moving away. “It’s all very well and good. But what are you trying to say?”
I woke up. It seemed like a reasonable question. I had no idea how to answer it.
My teacher assigned what she called springboard exercises at the end of every class.
Write about a secret.
Write about a pet.
Describe your earliest memory.
These exercises were meant to launch us into stories, but they only served to launch me into full-fledged despair. Night after night, I sat at my desk without writing anything, aside from a fresh row of scratch-outs on the surface of the unfinished door. Whenever my wrists got too sore to type, I jotted notes this way—reminders more than words—in a shorthand I’d invented. I still couldn’t hold a pen, so I used a brace meant for quadriplegics. When my right hand wore out, I’d switch hands; I had a second, left-handed brace for that purpose. You could always tell which scratches had been made by which hand, and all of them looked angry. These springboard exercises were stupid. How was I supposed to recall my childhood when I couldn’t even come up with details about the past few years, the past few weeks? I forgot deadlines, dates, assignments; sometimes, I’d forget the day of the week. When that happened, I’d panic completely. I’d feel myself falling, as if in a dream: Who am I? How can all of this have come to be? What will happen next?
My legs hurt, my arms hurt, and I’d started to develop what would become chronic back problems from sitting so much of the time. Though I often reminded myself that things were better than they had been, the pain was still distracting, like the wail of an infant in a nearby room. Even after all this time, I could never completely block it out. Even after all this time, I couldn’t fully believe that any of this had happened to me, was happening to me, my god, this was my life and what was I going to do?
“Can I help?” Jake said from the door. He knew that I was hating my English lit class, which I’d had to take in order to be eligible for my creative writing class. He knew that my creative writing class wasn’t going very well at all.
“Not really,” I said.
“I wish I could do something,” he said, and I could tell how very much he meant it.
That night I wrote a story in which a man admits to his ill and unhappy wife that he is helpless to console her. My teacher liked it better than anything of mine she’d read before.
I wrote another story in which an old man digs a series of holes in his backyard, trying to escape his own increasing sense of disorientation. My teacher pointed out that it dealt with themes of entrapment, frustration, physical restraint. I hadn’t meant to write about my own situation, but there it was. My writing was changing. I was changing. Each time I wrote, I found more of myself embedded in the prose: things I remembered that I’d thought I’d forgotten, things I had felt that I hadn’t known I was feeling. Each time I went to my desk, I became a little more attached to the world.
Describe your childhood kitchen.
List the contents of your top dresser drawer.
Write a concrete scene that implies an abstract emotion: anger, despair, curiosity, peace.
Winter passed. The weather warmed. One night in late April, writing late with the window cracked to the sound of peepers trilling in the ditches, I stumbled upon the litany I’d chanted as a child in Michigan, strings of words that swelled and sang, unspooling onto the page. There were the rooms of our rented house, my brother in his crib. There was the Infant of Prague, the picnic table built into the wall. I wrote until I had it all back, my wrists numb, pain grinding up the backs of my elbows. And yet, I had found a way to transcend it. It wasn’t a part of the world I was seeing. It wasn’t the story I wanted to tell.
At last, I turned off the computer for the night. I took the power chair into the kitchen, where I reached the ice tray down from the freezer, emptied it into the kitchen sink, and turned on the faucet—just as I’d done throughout my adolescence, after a long day at the piano. As the ice cubes hissed and spat, I remembered that time as well: the silence in my head after the music stopped, the humming in my forearms and hands, the darkness beyond the sliding door off the kitchen, overlooking a ravine. On warm nights, my arms still wet, I’d slip out into the moonlight and follow my shadow into the trees, feeling my way down and down into the gully, then rising again toward the field that led toward the stand of willows, the river, the cow pasture on the other side. It was there for me still, all of it was there. And it was me, now, standing in that field on two strong legs, breathing in the good earth smell of the fast-moving water, splinters of moonlight riding the hard current.
Perhaps, there was nothing permanently wrong with my memory. Perhaps it was just that I’d lost more than I wanted to remember. Perhaps I simply didn’t want to face what I now understood was the truth: that I’d probably never have a clear diagnosis. That I’d have to spend the rest of my life this way, in limbo.
When I was a child, the infant brother of a classmate died unexpectedly. The child had been unbaptized, only two days old. In catechism, Sister Justina explained that an unbaptized person, even a good person, even a little baby, could not go to heaven. No, when such a person died, their soul went into the state of Limbo, a place that was no place, nothing, neither punishment nor reward.
I imagined a gray room without walls, a gray floor, a gray bench. The light was such that there could be no shadow. The temperature of the air would be exactly the temperature of your own skin. You wouldn’t know how long you’d been in that room, or how you came to be there, or how much longer you had to go.