We are at the post office. We are waiting in line for stamps. My health, my body, is the furthest thing from my mind, and so it takes me a moment before I hear, another moment still before I understand. Because the woman pities me, she believes I am to be pitied. Because my disability looms large in her mind, she assumes it’s the only thing I’m thinking of. To her, to the man on the street corner, to the strangers and first-time acquaintances who make these remarks most frequently, I’m merely a body on a set of wheels. A fact without a context.
Women tend to pitch their voices high, as if speaking to a toddler on a tricycle. Wow, you’re really GOOD with that thing! How fast can you go? Men are more likely to use falsely hearty tones, making wheelchair “jokes,” the same ones, over and over. Hey, wanna race? You should get a snowplow for that thing. Do you take hitchhikers? Perhaps, the most bewildering remarks are variations on this theme: You’ve got it easy—the rest of us have to walk or I’m going have to get one of those things for myself. For it’s evident such people don’t want one of “these things” for themselves; on the contrary, it’s clear they see nothing about me to envy and everything to fear. Obviously, I’m not speedy. Obviously, most people can walk faster, certainly run faster, without much effort.
The summer I first got my E & J, I’d literally gape in amazement—in the grocery store, at the bank, in the student union—each time somebody leapt forward like a bugaboo to cry, Look out, I’ll give you a speeding ticket! Hey, you got a license for that thing? Perhaps it’s me, I thought. Perhaps I’m doing something wrong. It was kind of like hazing, I figured, something that would fade once I got more experience in the chair, once I learned to—but what was it I could learn? Five years later, when I replaced my wheelchair with a three-wheeled scooter, the comments became even more frequent. In recent years, I have taught at universities and summer writers’ conferences where the simple act of crossing a room has triggered, day after day, week and week, the same round of uneasy remarks: Don’t run me over! Can I have a ride?
There are times when my gratitude for a simple Hi, for a How’d your class go? or What did you do today? has made me want to weep. When I refuse—unfairly, I know—to make eye contact with anyone I don’t know well, I brace myself against the comments, the inevitable questions: So how come you use that thing? What’s the matter with you? I turn my speed control to high. I move through the crowd as fast as I can.
One of the last times I saw my Grandma Ansay, I convinced her to take a short walk with me. It was the summer after my first year at Peabody. I was home for a visit, restless, counting the days until I could head back east, and I didn’t think I could bear to spend the entire afternoon inside that stifling house. “Just to the end of the block,” I told her. “You can hold on to my arm.”
“Oh, oh,” my grandmother sighed.
I went to the window and pulled back the curtain. The day was as vibrant, as bright, as the living room was airless and dark. “Look,” I told my grandmother, who was cowering back, one hand raised in a kind of Dracula pose. “It’s gorgeous out there. The nicest day of the year.”
“Oh, say,” my grandmother said, but after a series of fretful sounds, sniffs, and fragmented words, she surprised me by going to the front hall closet and fishing out her long, wool coat. I helped her into it, pretending not to notice how elaborately she winced while poking her arms through the sleeves. In the process, she dropped her cane.
“No, no,” she wailed, as it hit the linoleum floor with a crack.
“It’s OK, Grandma,” I said, “I’ll get it, don’t worry about it.”
“No,” she said again, but more calmly, and she took the initiative to reach into her pocket, draw out a flowery scarf and tie it tightly beneath her chin. I was in shorts and a T-shirt, flip-flops. I handed her the cane and, together, we headed out the door.
My grandmother had been a beauty in her youth, and even now, despite the stroke, depression, and inactivity, her skin was luminous, her cheekbones perfectly sculpted, and when she raised her head you saw how very tall she was, how queenly. It was a Saturday morning and the neighborhood was quiet: rectangular ranch houses quartered on rectangular lots, two-car driveways facing the street, neatly trimmed and fertilized lawns so green that they seemed unreal. A single car idled somewhere up the street. A lone child ran through a sprinkler. The scrape of my grandmother’s orthopedic shoes was like the cry of an unfamiliar bird: a questioning rasp, then a pause, another rasp. We didn’t talk as we walked, because all of her concentration was focused on the left side of her body, lifting her knee, dropping her foot on the sidewalk, then taking a step with her good leg and dragging the left one after it. She was breathing hard. From time to time we stopped so she could rest. But for once, she wasn’t complaining. She wasn’t moaning, drawing attention to herself. She had made up her mind to walk to the corner, and we were nearly there when one of her neighbors, a man in his fifties, came out of his house. For a moment, he stood on his porch, watching our progress. Then:
“Hey, there, young lady!” he called.
I’d assumed he was talking to me. “Yes, sir?”
The man stepped off his porch and crossed the lawn to the sidewalk. “I meant the young lady,” he said, speaking in a falsely hearty voice. “Margaret, it’s so good to see you out for a change!”
My grandmother made a choked, little sound.
“And who is this?” he asked, indicating me. “Must be your older sister, am I right?”
I was seventeen and my grandmother was in her eighties. This time, my grandmother didn’t attempt to respond.
“This is my grandmother,” I told the man with great dignity.
The man laughed as if I’d told a good joke. “Well, I won’t hold you girls up,” he said. “Stay out of trouble now, Margaret.”
He winked at my grandmother, the way you might wink at a child, before heading back into the house.
My grandmother had stopped walking; she leaned heavily on my arm. We stood in the middle of the sidewalk, and the very air around us seemed to glitter with her rage and humiliation. “It’s OK,” I kept saying, but it wasn’t OK, and when at last she turned back toward the house, I did not protest.
The year I got my power chair, I often recalled that day; even now, when people say the things they say, I think about my grandmother. How ironic that I’ve finally come to understand her, to empathize, now that it’s too late. Like my grandmother, I find it hard to go out, to enter unfamiliar situations. I cherish my family, my small circle of friends, but I have to force myself to keep up with acquaintances, develop new relationships. Hey, recluse, pick up the phone! begins the latest string of unreturned messages on my answering machine. Then I remember my grandmother’s house, the drawn curtains, the stale air. I force myself to return a few calls. I order myself outside.
Today, it’s a beautiful autumn day. I put on sunglasses, hook the dog to my scooter, and take him for a walk in the park. He’s a few paces behind me, angling to snag something disgusting off the sidewalk, when I hear a woman loudly pointing me out to her children.
See that lady? she says. That lady is blind.
I begin to laugh, I can’t help myself. I laugh until I cry.
I once heard a radio interview with a writer who’d lost everything in a house fire. The young, eager interviewer suggested that, perhaps, the event could be construed as a lucky one, for despite the initial tragedy, the writer had been left with the ability to start his life fresh, clean. There was a shocked silence before the writer replied, and though I don’t remember exactly what he said, I remember how his voice shook as he tried, unsuccessfully, to conceal his anger and dismay. Didn’t the interviewer understand that everything the writer had lost, even now, remained incomprehensible? Manuscripts and correspondence, photographs and antiques, things that had been in his family for generations, things that could never be replaced. Evidence of his passions, the physical path of his comings and goings, all that had documented his passage through the world
—how could the interviewer suggest such a loss could be anything like lucky?
There was a brief silence on the air. And I remembered a time when I was newly disabled, in constant and grueling pain. A slight acquaintance—who knows why?—started nattering on about how I should consider myself lucky to have fallen ill, to be in a wheelchair, to have such a unique perspective on the world. I stared at my lap, too angry to speak, waiting for her to finish and walk away on her two strong legs, but no, she kept at it, kept digging herself in deeper, until at last something came apart inside my head and I snapped—cruelly, yes, unforgivably—“Well, then I hope something terrible happens to you, so you’ll have all the same opportunities.”
Loss is loss; grief is grief. Even now, I understand the writer’s longing for those photographs, how he must look back from time to time and wish he’d paid attention, studied them more closely. And what if he’d consigned them to a safe deposit box, the way he’d always meant to do? What if the fire had stopped with the kitchen, a little smoke damage, scorched curtains, nothing more? Who among us can honestly say that such thoughts never buzz against the screens, try as we will to chase them all out?
Yet I do understand, in theory, what the interviewer meant, what the acquaintance was trying to say. As a child, I was told that when God closes a door, He opens a window. As an adult, taking responsibility not only for my weaknesses and faults but for my strengths and capabilities, I see that every experience—positive, negative, and in between—contains multiple windows, large and small, if we make up our minds to find them. Still, there are times when the force of the door leaves us damaged beyond reason. When, like birds, we lie stunned for a minute, for an hour, and it isn’t clear to anyone whether we’ll ever come to, fly away.
Ten
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 sol
ved 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?”
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