Limbo (16 page)

For the first time in my life, there was nothing but silence in my head. No thoughts of music. No thoughts of God. How would I ever fill such a space? Who would I become? I was falling through the streets of Baltimore, falling through the surface of the earth. Only this time I wasn't dreaming, I wasn't sleeping, I was waking up and, try as I might, I would never go back to sleep again. Even my name,
Ann, Ann Manette
, tasted unfamiliar in my mouth.

A man had been trailing me in his car; now he rolled down his window, offered me fifty bucks to get in. Sixty dollars. Seventy-five. “That would pay for a whole lot of music books,” he said, and I spun around to look at him before I remembered I was wearing my Peabody sweatshirt.

“Made you look,” the man said, laughing. He was white, middle-aged, handsome. He wore a light coat open over his business suit and tie. A fat gold wedding band. He could have been my father. He could have been someone who cared about me. He was somebody's husband, somebody's child, and I wanted to get in his car, to sit beside him, to
tell him everything. He must have seen that in my face and misunderstood.

“One hundred dollars,” he said. “C'mon, that's more than you're worth.”

I believed him. I burst into tears, startling us both.

“Hey,” he began, but I was already running, and I ran until I got to Charles Street, where it was crowded and bright and safe. I went into a coffee bar where I tried to collect myself, while the waiters—beautiful and muscled and gay—brought me water and tissues, a glass of wine, rubbed my shoulders and called me
honey
and promised to seriously mess up whoever it was who had hurt me.

But no, I wasn't hurt. No, there wasn't anything anybody could do. When no one was looking, I left money on the table and hurried outside onto Charles Street. Then I headed back toward the Conservatory, legs aching from the running I'd done, swinging my right foot a little to keep from tripping on the toe.

P
oint of view
is the vantage point from which the world is observed, the story is told. If that vantage point changes, the point of view
shifts
, and the story reshapes itself to accommodate the new perspective. One landscape is lost; another is gained. The distance between is called
vision
.

I got my first power wheelchair in May 1987, a few months before my twenty-third birthday, eighteen months after I'd first come home from Maine for what I'd thought would be a few weeks of medical leave. It was an Everest & Jennings, a monster of a thing: black seat, black wheeliebars, black swing-away legs with shiny chrome footrests
that stuck out in front of it like bared teeth. I'd ordered it that way. No colors, no racing stripes. None of the chirpy, cheery accessories the dealer promised would make me
approachable
.

“Nice Death Star,” my brother said dryly, the first time he saw it.

We navigate our lives by the random light of symbols, concrete objects that shimmer with meaning—accurate or imagined. When I was twenty-two, a power chair stood for my greatest fear: dependence, weakness, failure. As the dealer demonstrated the joystick, the speed control, the battery charger, I felt as if I were preparing to renounce my citizenship, to cross some unimaginable border into a flat, colorless country where I'd live out my life in exile from everything that had made me who I was. Never mind that without it, I was living with my parents in a state of isolation, dragging myself between the bedroom and the bathroom, with an occasional detour to the living room couch for a mind-numbing dose of television. It could always be worse, I'd told myself. It's not like I'm in a wheelchair or something. The folding wheelchair we'd rented from the drugstore didn't count; it was, after all, just temporary. It was just something I sat in to, you know, get places.

“Ready for a test drive?” the dealer asked. He patted the seat as if it were a tricycle and I was a shy kindergartner. “All aboard!”

My mother looked at him sharply, then glanced at me. The word
asshole
appeared in my mind, and I knew she'd put it there. Earlier, when she'd pushed me into the dealership, he'd greeted us by asking her, “So! Is this the new quad?” Through the plate glass window, I could see out into the parking lot where my father was pacing around and around my new and newly customized Ford van. We all watched as he stopped at the control panel that operated the wheelchair lift, bent to insert the key. The lift went up, came down, went up again. Our insurance was covering the power chair, but my parents had paid for the van and its modifications out of pocket. There was no other way to transport the chair. It did not fold. It was too heavy to lift.

My parents were kind enough to pretend I was going to be able to pay them back soon.

I hauled myself out of the push chair, took the two steps to the E & J, and sank into the seat.

“Hey, you stand up pretty good!” the dealer crowed. “How does that feel? Should we lengthen the legs a little?”

“They're fine,” I said, mortified.

“Terrific.” He reached across my lap to turn down the speed control. “Take a spin around the room,” he said. “Let's see how you do.”

I turned the speed control back up.

“A daredevil!” he said. Then, turning to my mother: “They're all that way. Put 'em in a chair, and the next thing
you know, they're zipping up and down the sidewalks like race car drivers.”

Get me away from this guy
, I thought, and I waited for my mother to complete my thought by pulling me back, turning me around. Our lives had become so intimate, so closely intertwined, that we often read each other's thoughts, said the same thing at the same time. My mother could usually anticipate where I wanted to go, how fast I wanted to get there, when I wanted to stop. Now, however, she did nothing, merely stepped back a little. That was when it hit me: I could move independently. I could decide which way I wanted to go without communicating this to anybody. Even using crutches had meant a certain amount of team effort: I couldn't carry anything; I couldn't open doors; I needed somebody to run ahead and make sure there would be a place to sit down. At home, I knew how many steps I'd need to get myself through the day, and these steps were budgeted, rationed, tallied, for I didn't have any to spare. In new situations, my mother ran ahead like a military scout, returned with the information we needed to plan my advance.
There are two steps up if we go in this way
, she'd say,
but there's a radiator you can perch on as soon as you get to the top; the other way is longer, but there aren't any steps, and there's a bathroom on the way
. We always kept an eye out for bathrooms. If we saw one I could get to, I used it whether I needed to or not. You never
knew how long it would be until the next one came along.

The power chair was about to change all that.

I touched the joystick, and the chair lurched forward, surprising me. I had tried a power chair in Rochester, under the supervision of a physical therapist, but that had been a battered old granddaddy of a chair, with a headrest like a vise grip, and fuzzy sheepskin covers on the footrests. Its top speed had been a careful walking pace. To turn a corner, you had to swing wide.

“Let me turn down the speed—” the dealer began, but as he reached toward me, I backed up, clattering into a row of walkers. He leapt to catch them, and I spun around in place, veered around my mother, and headed down the main aisle of the store. When the automatic doors opened, I continued outside. On a whim. On an
impulse
.

It was the first spontaneous thing I'd done in nearly two years.

Outside, it was one of those perfect spring days when the Midwestern sky turns impossibly blue. I circled the van and found my father on the other side, scratching at something on the paint. When he straightened up, I saw myself—my new self, sitting in the power chair—reflected back in the mirrored lenses of his sunglasses. I realized I was seeing what, from now on, other people would see, with all its associations. The image my father was seeing for the first time. The reality of my illness, its impact on our lives.

“Sweetie,” he said. His voice was shaking. He ducked his head, then turned away so I could not see his face.

 

I had thought
it would be difficult: going back to college in a wheelchair. Passing through narrow doors, locating ramps and elevators, navigating the crowded cafeteria and the dim aisles of the library. Attending my classes without taking notes; having exams administered orally. Making friends and falling in love. Graduating. Moving on.

It was, in these ways, remarkably easy. Life is not a thriller, a hyped-up movie-of-the-week. Its plot isn't crafted. Its revelations are often retrospective and mild. If you weep, if you rage, if you slump down in defeat, there is no one to see you do it, and so—like a child's tantrum—the inclination passes. You can't help noticing that on days you do not weep, you look better in the mirror, and you manage to accomplish more. You relearn, without drama or sentimentality, how to do the things you need to do. You learn to accept help graciously when something you need to do cannot be done. Eventually, a few weedy tendrils of curiosity poke through the dormant soil, and though you yank them up at first, refusing to be consoled, you are aware, even as you do so, of your own melodrama. When more appear, you let them grow. Soon you even plant a few seeds. Suddenly, you are busy with another thriving garden. Things that have been lost to you make room for others you'd never have
planted, were you not motivated to consider other options. Had you not been forced to look around, make different choices for yourself.

A year or so after I started using the power chair, I dreamed that I lived in a two-story house, and that the upper story was filled with all my belongings. In my dream, I was standing at the foot of the stairs, my wheelchair beside me, and I was overwhelmed with sadness because I knew that I couldn't get back up the stairs to retrieve my things. After a while, I noticed that the downstairs wasn't empty, as I'd first thought, but nicely furnished. My belongings were everywhere, scattered between other things, many of which I didn't recognize. But when I looked at them more closely, I realized they were mine after all.

I awoke from the dream feeling as if something had eased. So many of us can divide our lives into episodes: before and after. Before the accident, the heart attack, the cancer. After the war, the divorce, the child's death. The abyss opens beneath our feet, and we leap it,
not
because we are particularly brave, but simply because we must. We land in a whole new country. We put on its clothing, learn its customs, begin again. And yet, the events of our lives still form a single continuum. The things we have experienced go on to shape the things we will experience, a year from now, ten years from now, in ways we can't possibly imagine.

This is what I mean when I say it has been easy. It is only in ways I could not have imagined that it hasn't been easy at all.

Today, it's the man on the street corner, whose eye I have accidentally met. I'm late for a meeting, willing the red light to turn green, so when he says,
I have a lot of respect for someone like you
, the blank look I give him—is genuine.

Someone
like me
?

After the meeting, I duck into a market for groceries, buy flowers from a vendor. The meeting has gone well, and now my head is full of a proposal I must write in collaboration with a friend. But I manage to remember the letter in my purse, a letter I've been carrying around for days, a letter that should have gone out a week ago. I swing back to the post office, get in line, and I'm smoothing the worst of the wrinkles from the envelope when the woman in front of me turns around.
You're seem awfully young to be in one of those things
, she says, mournfully.
Is it permanent
?

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.”