In fifth grade, they divided us for the afternoon. The boys were sent to the gym to play kickball, while we girls crowded into the windowless room next door. The school nurse was there, and so was the guidance counselor, along with a lady we had never seen before. She wore make-up and a tall blond wig, and she was busy setting up a film projector.
The kickballs thunk-thunked like distant drums.
“This is going to be gross,” my best friend, Tabitha said.
In fourth grade, she’d told me what Keri Hommerding had told her: that to make a baby, a man stuck his thing up inside you, there. “That’s not true,” I insisted, but just to make sure, I checked with my mother. Instead of denying it, as I fully expected her to do, she’d sighed and removed the pins from her mouth-she’d been sewing a Halloween costume for my brother-and said that there were beautiful explanations of conception and then there were ugly ones, and that Keri Hommerding’s was one of the ugly ones. She said that before I was born, she and my father both had gone to church and prayed very hard that God would send them a baby, and because they were very much in love with each other, God had sent them my brother and me.
It was so unlike my mother to lie that both of us blushed until my mother said, “OK?” and put the pins back in her mouth. I crept out of the room, feeling sick to my stomach, for I knew that the truth had to exist in some terrible in-between place. That night, just as I was falling asleep, it came to me like an incubus. It sat on my chest and sucked my breath and there was absolutely nothing I could do. Sex was what Father Stone did to people in the confessional. Hadn’t I had seen all the mothers and fathers lining up to see him, week after week? Hadn’t I watched them step, one by one, behind the red velvet curtain? Hadn’t I always wondered what really went on in there?
“Are you sure you want a baby?” Father Stone would say, pulling up his long, loose frock under which-all the kids would have bet their lives on this-he wore absolutely nothing at all. “Will you be good parents?”
I’d tried to put the whole business out of my head, but now that my First Confession was drawing near, it was often on my mind. Once, I’d asked my mother if I might delay my First Confession until I was older, but she’d replied that I was mature for my age. In her opinion, I was ready.
“Ladies,” said the lady in the tall, blonde wig. Her voice was calm, respectful. A frenzy of kickballs battered the wall; she paused until the sound subsided. “Your bodies are going to start changing soon. Your hips will widen. You’ll develop breasts. You’ll notice hair growing in places you never had hair before. Some of you may already have noticed some or all of these changes.”
“Barf,” I whispered to Tabitha.
“I told you,” Tabitha said.
But the film the blonde lady showed wasn’t gross at all. It was a cartoon, and it was very funny, with this wild-eyed crazy sperm darting around after an egg who, looking bored, batted her very long eyelashes. And after the film, each of us got a paper bag of gifts: Kotex of various sizes, a pink, pocket-sized calendar and a slender, matching pen. Very Personally Yours was written in gold script across the front of each calendar. The lady explained how to mark the calendars on the first day of our periods, how to calculate when ovulation-the release of an egg-would occur. During ovulation, we could become pregnant if we engaged in sexual intercourse. Did we all know what sexual intercourse was?
Nobody breathed. I imagined Father Stone’s red-knuckled hands tugging his robe up over his knees.
Sexual intercourse occurred when a husband put his penis inside his wife’s vagina and moved it rapidly back and forth, the lady said. The friction was enjoyable to both. Sperm came out of the husband’s penis and fertilized the wife’s egg.
Next door, the boys cheered. Somebody had scored.
Do you have to be married? Martha Sheinke asked.
Yes, the lady said.
All around me, girls were murmuring squeamishly, but I thought I might faint with relief. The lady’s voice was so calm, so matter-of-fact, that I knew she was telling the truth. My first confession would be fine now, it wouldn’t be any big deal. I wouldn’t have to have sexual intercourse until I got married, and Father Stone would have nothing to do with it.
Did anyone have any questions?
Adrenaline fired through my veins. My hand shot joyfully into the air before I realized it had done so.
I leaped to my feet. I was grinning, an ear-to-ear foolish grin. All the other girls were looking at me. I didn’t know what to say.
Yes? the lady said again.
Can you sleep on your stomach if you’re pregnant? I blurted.
Everybody laughed and I laughed too, only then I kept on laughing. I couldn’t stop. I couldn’t sit down. Tears leaked from the corners of my eyes. The other girls looked at me uneasily.
Can you sleep on your stomach if you’re pregnant? the lady repeated soothingly, as if she understood. Now that’s a good one. I don’t know if I can answer that because I’ve never been pregnant. Do either of you have children? she asked the school nurse and the guidance counselor. But neither of them did.
It is probably safe to use common sense, the lady said, and assume that the answer is no.
I have moved eleven times in the sixteen years since leaving home, a word which, to me, will always mean southeastern Wisconsin, and the little town where I was raised, and my grandmother’s one hundred acre farm seven miles to the north. At thirty-six, wading through the shallows of middle age, I have been permanently shaped-and am still held fast-by landscapes which exist in memory alone, though this makes them no less real when they come to me in dreams, when fragments are triggered by a random fact or phrase. Here is my body’s lost exuberance. Here is my Catholic faith, that Gothic cathedral, that haunted house. Here are the straight highways, the crops and their seasons, the blue haze of Lake Michigan: wide open space beneath a close sky.
It doesn’t take much-a look, a phrase-and suddenly I’m a child once more, running hard and fast down a narrow dirt road which has since been developed into another antiseptic side street, the fallow fields surrounding it sold, subdivided, populated by three bedroom ranch houses, each wrapped in vinyl the color of a hospital gown, each with its garage door shut, an expressionless face, like someone waiting for bad news. Yet there’s no sense, as I run, that I’m recreating something, repainting this landscape as if by numbers, filling in color and sound. I’m simply here, I’m home, and any return to the present will be informed by what I’ve seen.
How is it that, for this splendid moment, I’m able to run-something I haven’t done since I was twenty-elbows pumping, heels striking the earth, carrying myself deeper into a place that is nowhere, nothing, lost, in a body whose unselfconscious sense of movement, whose entitlement to such movement, is lost as well? The part in my hair feels like a cut where the August sun strikes against it, the skin tingling pink. There’s a sweet, cold ache in my chest, a lemonade taste in my mouth. I feel as if I could run forever, but, of course, I’m wrong. When the ball of my foot meets a stone, I suck in my breath and hop toward the ditch, where I collapse matter-of-factly to inspect the damage.
A coin of blood, bright as a posy. In its center, a pebble. A scrutinizing eye.
Automatically, I offer my thanks to God, my pain to the Pour Souls in Purgatory. The pebble is God’s message, His communication, His way of making me pay attention; I study it the way I’d study a difficult problem at school. Give thanks in all circumstances, the Bible says. Perhaps, the pebble kept me from running ahead into the path of a rattlesnake sunning itself in the dust. Perhaps, the pebble has delayed me just long enough to prevent me from crossing Holden Street, where I live, just as a speeding car hurtles through. In my world, in the deep, underwater sleep of belief, there is no such thing as an accident. Just because you can’t find the reason doesn’t mean it isn’t there. God is simply testing you, testing the condition of your Faith.
I imagine my Faith like a diamond or ruby, a shining, precious stone. Something that must be protected. Something that can be shattered, stolen, lost. A person who loses their Faith, I know, becomes an atheist. The sound of the word gives me the feeling I get when, at slumber parties, my friends and I sneak outside. We walk through the darkness in our flimsy nightgowns, pretending there is somebody following just behind us, a man dressed in black and holding a knife. We can feel his hot breath on our shoulders. We can hear him licking his lips. We stare straight ahead, taking slow deliberate steps, for he’s unable to touch any of us-as long as we all stick together. As long as nobody looks back.
I stand up, brush off my shorts, eager to head back home. Already, the pebble is a story I can tell, a currency to be spent. I’ll walk all the way to Holden Street on my heel, careful not to jar the pebble loose. There, I’ll find my younger brother and make him watch me dig it out. If he’s admiring, I’ll let him keep it. If he feigns indifference, I’ll tell him about tetanus, enact the grim onset of symptoms, suck my cheeks hollow as starvation sets in. When he’s on the verge of telling our mother, tears bright in his eyes, I’ll admit that I’ve had a tetanus shot.
Then, with slow relish, I’ll describe the length of the needle, how the nurse shoved it in to the bone.
* * *
“The cradle rocks above an abyss,” Vladamir Nabokov writes, “and common sense tells us that our existence is but a brief crack of light between two eternities of darkness.”
Memory, then, like the switch on the wall. The pull chain on the lamp.
* * *
My first memory is of memory itself-and the fear of its loss, that vast outer dark.
One night, as I lay floating in the still, dark pond between wakefulness and sleep, a stray thought breached the surface like a fish: you will forget this. I opened my eyes. To my right, tucked under the covers beside me, was an eye-less Raggedy Ann doll. To my left, on top of the covers, was a large plastic spark-plug-a display model which my father, a traveling salesman, had coaxed from some farm dealership and presented to me. My father’s gifts were unpredictable and strange: hotel ashtrays, pens with company slogans trailing down their sides, desiccated frogs and snakes he found along the highway, jaws pulled back in agonized smiles. These things populated the bedroom I shared with my two year old brother like the grasshoppers and pianos and clocks in a Dali painting, startling the eye from my mother’s home-made curtains, the Infant of Prague nightlight keeping watch on the bedside table, the child-sized rocking chair. The spark plug was nearly three feet long; if you shook it, something mysterious rattled around inside. It was tied by a string to a wooden spool, and during the day, I dragged it clattering after me, the way other girls carried dolls.
You will forget this.
It was 1969. I was four years old, almost five. The thought swam back and forth in the darkness, gaining speed, and I could see it was an ugly thing, long as the moray eel in the World Book Encyclopedia, with rows of needle-sharp teeth. Fully awake now, I sat up, swung my legs off the edge of the bed. Could it be true?
Across the room, my brother slept in the crib that had once been mine. It was the size of a generous icebox, the wood-slatted sides painted light green, and I could not imagine being small enough to sleep comfortably inside it. Yet my mother had pictures to prove that I had, slides I could hold up to the light. A solemn-eyed baby stared back at me. You, my mother explained. She said that Mike wouldn’t remember being a baby, either. Nobody did.
At the time, we were renting a house in Michigan, forty miles from Detroit. Piggy-back trucks rattled over the speed bump on the highway, twenty feet from our porch; railroad tracks divided the gray-faced neighborhood. At night, the slow-moving freight trains passed so close that I could feel the vibrations in my mattress, my chest. It was a sensation I loved. Would there be trains in Wisconsin? I’d wanted to know when my mother explained we would be moving there in May, returning to the area where she and my father had grown up, where their parents and brothers and sisters still lived. Already, she’d started boxing things up. During the day, I wandered from room to room, passing my hands through the empty spaces where, only weeks earlier, the pieces of my life had exhibited themselves, unquestionable as the prayers I said before and after each meal, incontrovertible as God.
Now, to test myself, I imagined everything back where it belonged. I went through the small dark rooms of my memory, moving myself like a game piece, forcing myself to articulate everything I saw, or heard, or smelled, or touched. How could I forget our kitchen with its chipped Formica counter, or the picnic table where we ate, painted pale blue-the Virgin’s color-and built into the wall? Or my parents’ bedroom with its neat twin beds, and the way I’d catch them holding hands across the open space between them? The morning light coming in through the “sheers”-pale, fancy curtains that I wasn’t allowed to touch. The look and feel of my hands just as they were, the right one finally big enough to span four keys on the piano.
Everything was there for me, safe in its place. Even the darkness was familiar, bound to the sound of my brother’s sleep, his tapioca smell.
Still, just to be sure, I recreated the previous day: rising, dressing, eating breakfast, walking to nursery school with my mother, home again for lunch and a nap, then late afternoon at the piano, and supper, and a bath, and bedtime. I recited, word for word, the books my mother had read to me; I listed the food I’d eaten. But some parts of the day were less clear than others, and when I attempted to recapture an earlier day with the same intensity, I faltered. Suddenly, I thought of all the times I’d begged my mother to tell me what she’d been like at my age: the first word she’d learned to read, the first song she’d learned to play on the piano.
“I don’t remember,” she’d say. Or, “That was a long time ago.”
The truth hit me then: I would forget. There was nothing I could do. Someday, I’d be a grown-up woman, and I’d forget all about the girl I was now. It would be as if she’d never existed. I extended my legs, pink in the night-light’s glow, and they seemed other-worldly, unattached. Years later, reading “Slaughterhouse Five,” I encountered Kurt Vonnegut’s famous line: Listen: Billy Pilgrim has come unstuck in time, and I saw myself, again, on that night, in that room, and at last I had the words to describe exactly what I’d felt.
* * *
“I feel stupid,” was what I told my mother, then, and on the nights which followed, when she’d get up to find out why I’d turned on the light, why I wasn’t sleeping.
“But you’re smart,” she’d say, and we’d stare at each other, despairing, for I was unable to explain what I meant, and she couldn’t imagine what was wrong. As soon as she’d leave, I’d sit up again, because without the light, I knew I’d fall asleep. And I didn’t want to sleep. I had work to do. I was trying to save us all. By day, my mother was packing up the house; at night, I packed again, in secret. I memorized the layout of the house, the arrangement of the furniture, the furniture itself. In my mind’s eye, I opened the kitchen cupboards, the bedroom closets, the vanity over the bathroom sink. I marched around the back yard, marking the location of trees, noting the imperfections of the swing set. I sat down at the piano and went over the simple songs I’d learned, and the long melody played with both hands in unison which I was endlessly composing. Then I recited events, beginning with the most recent day and working my way back in time as far as I could. After a week or so, this litany became like a prayer, a sequence of words I could rattle off without thinking, the syllables slurred, the intonations unvaried.
The trouble was this: with each passing day, new events had to be added. This made the litany grow longer and longer. At nursery school, I sat quietly, trying to limit the things I’d be obliged to remember that night. My mother took me to see Dr. Heitch, and I sat on a table covered in white paper, staring down at his bright green pants, which reminded me of Mr. Greenjeans on Captain Kangaroo. This detail, too, was duly noted, packaged in a coil of words, sealed and labeled for the future. Someday, the grown-up person I’d become might want this image back. She might, for whatever unforeseen reason, decide she needed these things I was storing away with an archivist’s care. And if she did, they would be waiting for her, just like our plates and cups and photographs would be waiting for us when we got to Wisconsin, wrapped up in pieces of newspaper.
* * *
We moved in June, first to my maternal grandmother’s farm for the summer, and then, at the end of August, to my paternal grandparents’ house in the nearby town of Port Washington, where we lived while our house on Holden Street was being built. One evening after supper, my father took my brother and me to see the newly-poured foundation. He pointed out where the walls would go, and the stairs leading up to the second story. The house would have wall-to-wall carpeting, a two car garage, central heat. From now on, we’d even have our own bedrooms-what did we think of that?
“The Tiger needs his own cage,” he said, dropping a proud hand on my brother’s shoulder.
Within a few weeks, the house had floors. The skeleton of walls appeared and then, remarkably, walls themselves, with copper pipes and insulation and sheet rock. There was a fireplace big enough to sit in. Ceiling fixtures. Toilets. We brought scraps of lumber back to my grandparents’ house and carried them down to the basement where my grandmother never went. There we played for hours, designing houses, then knocking them down. Upstairs, my grandmother sat in her chair, strangling her rosary between her long, white fingers.
I no longer lay awake at night, trying to remember things, perhaps because there was nothing about my grandparents’ house I particularly wanted to remember. Still, I clung to the old litany, chanted it as if it were a charm, a magical incantation as I fidgeted through the Lawrence Welk show, as I sat through my grandparents’ endless meal time bickering, as I stared up into the bright orange clusters of berries that hung from the small, regularly-spaced trees in front of my grandparents’ house. The berries were poisonous, my mother explained. They were decorative berries, which meant they were there to look at, not to eat. At my other grandmother’s farm, there had been mulberries, gooseberries, raspberries, blackberries. I’d eaten my fill of them and beyond, eaten until my lips were raw, sour-tasting against the sweet, and my other grandmother had laughed whenever I’d stuck out my brilliant red tongue.
One day, it occurred to me that each of my grandmothers had the right kind of berries. I tried to explain this to my mother, but without the word symbol, we wound up exchanging another round of despairing looks. Yet the thought left me wonderfully satisfied. It was delicious, like solving a puzzle, like having the last word.
* * *
In September, I started kindergarten. My father began to travel again, and in his absence, my grandparents left all the cooking and cleaning and laundry to my mother. She had just started a new job herself, teaching fifth grade at the same public school I attended, and her utter exhaustion made her seem unreal, a copy of a copy of herself. Whenever I could, I lingered near my classroom door, hoping to catch a glimpse of her walking past in the hall. “Are you my mother?” I’d ask. “Are you sure?” She’d laugh and kiss me, tickle my neck, thinking I was playing a game.
At noon, when my school day ended, I’d walk back to my grandparents’ house with another little girl who lived on the same street. My brother always waited for me in the front bay window. He’d follow me around as I got out two plates, poured two glasses of milk, divided the sandwich my mother had left for us. My grandmother watched, clicking her tongue. She prepared and ate her own food. “Naughty girl,” she’d tell me for no reason I could see, and a strange little smile fluttered about her lips. My grandfather was seldom home with us. He left every morning for the Senior Citizen’s Center, where he spent the day playing sheepshead and gin rummy. In his absence, my grandmother would say peculiar things. “I know all about you,” she’d whisper, nodding with narrowed eyes, as if she were seeing someone else, someone she didn’t like. Sometimes she cried for no reason. Sometimes she told my brother he was really her little boy.
One day, my brother wasn’t waiting for me in the window. I found him in the spare room. He was under the blankets on the day bed, sucking his thumb, staring at nothing. I talked to him for a long time before he finally blinked, disbelieving, like a very old man awakened from a charmed and terrible sleep. My grandmother had told him that my mother was dead. It had never occurred to me that an adult, a grown up person, might tell a lie. Suddenly, the world gained a whole new perspective. Sentences became three dimensional, alive with possibility. Words cast long shadows in which anything might hide. I listened with new ears, spoke with a fresh tongue. At school, if somebody asked what I’d had for breakfast, and I’d had eggs, I’d say, “Cereal.” Why? Just because I could. Just to see if anything happened. Nothing ever did. How easily one word could be swapped for another. How effortlessly you could build a secret life, a second life, a kind of shelter.
* * *
At last our house was ready. We moved in, unpacked our belongings, settled into our new lives. My mind was occupied with school, and as I grew older, I became more interested in learning new things than remembering old ones. Gradually, I let go of the litany I’d loved, each detail linked so deliberately to the next, all those things I’d packed away in secret. Over time, they were shoved further and further to the back of my consciousness. I doubt I’d ever have found them back if I hadn’t, in my early twenties, fallen ill.
This is the story that, for more than ten years, I could not tell, the single thing my father asked me not to write about.
On a clear, cold day in January, 1955, my grandfather drove my father to a tuberculosis sanatorium in Plymouth, Wisconsin, where he would remain for the next twenty months. My father was nineteen. He had a ninth grade education. He carried a bundle containing his pajamas, a bathrobe, bed linens, a single towel. No personal items. No magazines or books, for even if there had been such things in my grandparents’ house, my father would not have thought to read them. He followed the nurse, Miss Monica, to the bed that had been prepared for him, the last bed at the end of a long row of beds, some of which were curtained, some of which were occupied by sallow-faced women. A few of these women slept. Others followed him with their eyes. One of them winked.
“None of that,” Miss Monica said.
She explained that this, the ground floor, was the women’s ward. The men’s ward spanned the three upper floors, which were overcrowded and noisy. The men assigned to the highest floor, according to Miss Monica, were wild-so wild, in fact, that two had only recently crawled out the windows, scaled the walls like monkeys, and vanished into the trees. Considering my father’s youth, Miss Monica thought it would be best if he claimed a bed in the women’s ward. Things would be quieter here. She reminded him how important it was that he lie flat, keep still. Medication would help him sleep. A TV rotated between the floors; each floor got it, in its turn, for one week.
After she’d gone, my father pulled the curtain around his bed. He undressed and lay down. After awhile, he reached out and tugged the curtain back. The woman who had winked at him winked again. My father closed his eyes. He would celebrate his next two birthdays in this room, in this bed.
Tuberculosis was not uncommon in rural Wisconsin. No doubt my father contracted it through a carrier who had gotten it from his cattle, as did so many of the farmers in those days. The TB settled in their lungs, or in their joints, or in their spines. Absolute bed-rest, along with antibiotics and isolation, was the standard treatment of the day. Under these conditions, the body fought the disease by gradually containing it within a calcified node. At that point, the growth could be surgically removed-in my father’s case, more than a year after he’d first been admitted to the san.
The san. My father describes the day he was admitted in the careful, paint-by-numbers tones of a man not used to revealing personal things. It is his gift to me. “A clear day,” he says. “Clear and cold. January twenty-first, nineteen fifty-five.”
He is standing in the doorway of my bedroom, halfway in, halfway out. It’s early evening, just after supper, and I’m already back in bed, where I’ve spent most of the day. Lumps the size of frozen peas have buckled my shins, and even the short trek from the dining room has left every muscle below my knees burning. Crutches help support my weight, but I can’t use them for long because my wrists and forearms are also inflamed. I lie rigid under ice packs, the bedside lamp turned out.
It is 1987. I am twenty-two years old. Walking, gripping a cup, standing up long enough to take a shower-simple things like these are agony, and no one can explain why. Three years earlier, I’d been forced to drop out of the Peabody Conservatory of Music, where I was a piano performance major, unable to control the inflammation in my arms and hands. After casting about for another career, I wound up at the University of Maine-the result of a series of drifting, short-term jobs-and there I took courses in genetics, evolution, anthropology, trying to re-invent myself, to imagine a life without music at its core. It was easy, at first, to ignore the fact that my health continued to deteriorate. Then I began to limp. I dropped things. I fell down. Finally, I took a medical leave, expecting to be back in a month, maybe two.
By now, fifteen months have passed.
Twice, I’ve attempted to return to school, to get to my classes on crutches; twice I’ve been forced to pack up and go home. On a good day, I can crutch the length of the house; on a bad day, I stay in bed, avoiding liquids so I won’t have to haul myself to the bathroom, waiting for my mother to come home from work, which she does twice a day, to see if I need anything. She touches my hair, asks me questions, forces me to interact with the human world. On weekends, she helps me out to the car, heaves the folding wheelchair we’ve leased from a drugstore into the trunk, and takes me to Cedar Grove for an ice cream, to Brown Deer for a movie. She suggests foreign language tapes, educational videos, correspondence classes. She buys me a tape recorder and cassettes so I can record the college assignments my hands cannot write, the papers I’m supposed to be turning in by mail.
Nights after supper, when my mother comes into my room, she throws on all the lights, sets up the Scrabble board. But my father stands helpless in the doorway. He does not turn on the light. Halfway in and halfway out, he tells his story, this story, the one he never talked about when, as a child, I asked questions. He describes the same details again and again: the squirrels that came to the window. The slow rotation of the TV. The man upstairs who wept each night until the others shouted him into silence.
My father’s body forms the shape of a star against the bright backdrop of the hall. In the months since my illness began, our relationship has changed. Before, he was simply Dad, a stock character, like somebody on TV: the bread-winner, the tie-breaker, the one who threatened to put his foot down. You applied to him for money, or if you needed to borrow the car. Facts rattled in his pockets like change. One of those facts, of course, was love, but this was a coin that never got spent, one that stayed deep in the safety of his pocket, for the world of emotion was my mother’s terrain. But now all of that has been swept away. My father holds nothing back. He describes the slow passage of days, his exhaustion, his bewilderment. If I cry, he doesn’t leave the room but stays, the way my mother stays: waiting, weathering, solid ground.
And when he tells me that, someday, what is happening to me will feel like a dream, like it happened to somebody else, I do not get angry the way that I do when other people, trying to cheer me, say the same thing. I don’t ask, How can you pretend to know how I will feel? I don’t say, This time is all lost for good, and even if I get better someday, I will never get this part of my life back, don’t you see? I don’t ask, And what if I don’t get better, what if things just go on and on the way they are? which is all I think about during the long hours when he and my mother are both at work and my friends no longer call, when relatives and neighbors and people from our church go about their own lives, as they should, as they must, though they remember me-they are quick to assure my mother after Mass-in their prayers.
My maternal grandmother lights candles for me, buys Masses to be said in Rome on my behalf. An aunt wants to send me to Boston, to a priest who heals by laying-on of hands. Everybody says they are praying for me. Everybody tells me that God has His reasons, that everything is part of His plan. But I no longer believe in God that way, as someone who cares about any one person’s problems, an almighty mechanic who charges stiff fees to repair what was in His all-knowing plan to break.
* * *
Alone in my room, time doesn’t pass. It bleeds, blurs, washes me along. Sometimes, I strap braces on my wrists and poke at the typewriter my mother has placed on a card table next to my bed. She encourages me to write poetry, to identify the birds that visit the window feeder, to read the dog-eared books she brings from our limited public library. She is still looking for that silver lining. She believes-fiercely, inconsolably-that we have every reason to be optimistic, that the cup is actually half-full. But I can’t raise my feet or point my toes. I can’t grip a pen. I have blood in my stool. I’m in constant pain, and though I can’t imagine how this can be, everything seems to be getting worse.
There have been, of course, many theories over the course of the past fifteen months. There have been, along with each of these theories, their attendant diagnostic procedures. Another clinic. Another doctor. Another bill with its neat, itemized columns.
I am told I have lupus. I have a viral infection. I have heavy metal poisoning, environmental illness, food allergies. I am psychosomatically ill. I have Hodgkin’s’ disease. I am experiencing after-effects from a concussion I had when I was twelve. I have systematic tendonitis, fibromyalgia. I have a chronic pain syndrome, a rheumatoid disorder, sympathetic reflex dystrophy, peripheral neuropathy, a reaction which harks back to an over-prescription of penicillin during my teens. I might have MS, but it’s too soon to say, we’ll just have to wait and see.
I have tests and more tests: bone scans, nerve conduction studies, MRIs, dozens of x-rays. I have neurological exams in which I close my eyes, touch my index finger to my nose, attempt to stand on one foot. I have psychiatric exams in which I’m asked if I hear voices. I have rheumatoid exams in which the same blood tests are repeated again and again. I have ultrasound treatments, paraffin dips, TENS, biofeedback, injections of B12. I have endless physical therapy which inevitably makes things worse, for any repetitive activity involving my arms or legs causes still more inflammation. At a university “teaching” hospital, I have an exquisitely painful lumbar block-“to re-start your neurological system,” I am told, “just like pressing the start button on a furnace.” In retrospect, it seems as if the true purpose of the block-can this be true?-is to provide experience giving such blocks, a standard procedure during childbirth, for the first year residents. Eagerly, they line up to insert the needle into my spine, and it is only after four have tried and failed that the attending physician steps in. Neither this block, nor any of the ones that follow, make any difference beyond a spectacularly bruised back.
“MS?” says the next doctor, the one in private practice who combines homeopathic remedies with traditional medicine, the one who does not accept insurance. “I don’t know what this is,” he says, “but it certainly isn’t MS. More like a sports injury. You’ve aggravated your connective tissue to the point where your immune system doesn’t know when to quit.”
It is true that I played the piano for four to five hours every day, dreaming of becoming a concert pianist despite “tendonitis” in my arms and wrists. It is true that I walked and jogged with “shin splints” in my legs. A sports injury doesn’t seem too far fetched. I try the special diet that the homeopathic doctor suggests, avoiding eggs, wheat, sugar, corn, dairy products, nuts. I swallow aloe vera juice, burdock root, goldenseal. I have cranial sacral therapy; I visit a chiropractor; I see an herbal healer who reads my irises and studies my tongue and prescribes several foul-smelling tinctures. When none of this works, I fly to Boston, to the sports medicine specialist I’d seen the previous fall. There, I have surgery on both legs to relieve raised pressure in the muscle compartments, but this leaves me even worse off than before, for not only do the incisions create more inflammation, but they result in permanent nerve damage that will complicate future diagnoses.
I fly home.
Three months pass as I wait for an opening at the Mayo Clinic in Rochester, MN. It is here, in the fall of 1986, that I receive the first round of steroid therapy that appears to help: injections of cortisone, oral prednisone.
After that, my mother and I make the seven hour drive to Rochester every six weeks. The clinic is a vast medical complex like something out of Kafka, complete with towers of paperwork, dimly-lit waiting rooms, beeping machines and inexplicable procedures. Shuttle busses run between the local motels and the main entrance to the clinic, where wheelchairs are stacked like shopping carts. My mother has learned to test a few, checking for stuck brakes and speed wobbles, before choosing the one she will use to push me to appointments and tests and follow-up appointments, stopping now and then to consult the paper map we’ve been issued along with my patient ID. Tiled halls lead to elevators that open onto tiled halls. Underground tunnels connect the clinics, crowded with people wearing the uniform mask of exhaustion: families in street clothes, doctors in scrubs, out-patients glancing at watches and maps, in-patients on stretchers, or pushing their own IVs. There are subterraneous boutiques, wig shops and flower shops, beauty parlors, restaurants. Balloons bubble out of doorways, bright colors jaundiced by fluorescent lights. Small battery-powered dogs-the year’s impulse buy-shudder and yap in the display windows. When the corridor bends, fisheye mirrors mounted near the ceiling let you see who or what is racing toward you-a EMT team, a power wheelchair, a defibrillation unit with BE CALM painted on its side.
At each appointment, I leave the wheelchair behind in the waiting room, crutching more and more slowly after the nurse, who assures me we’re almost there, it isn’t much further, or do I want my mother to bring me the wheelchair? I do not. It is desperately important that I meet each new doctor, each new technician or nurse, standing up-or, at least, sitting in regular chair and not a clinic wheelchair. I want to prove that I’m not like the others, the sick, the hurt, the hopeless. Nope, not me, I’m different, I’m fun. One look at me and the doctor will see, must see, that this is some kind of mistake, that I’m really not like this at all.
But the truth is that my body is just one more mystery to be solved. Already, there are patients piling up in the waiting rooms. Appointment schedules have fallen behind. There are medical students who must be instructed, who stand in a weary half-circle around the examining table as a nurse moves my crutches aside. The doctor may or may not look me in the eye, may or may not speak my name. Once again, I recite my medical history, the story that has swallowed all the others I might tell, a story that stretches out in front of me like the paper map my mother unfolds before pushing me off to my next appointment, an arrow pointing to YOU ARE HERE, a circle that represents the place I must go. There are halls and doorways, elevators and waiting rooms. The walls are painted in gentle pastels that are neither blue nor green, but something that is neither, indescribable, in between, colors that only a psychologist could determined to be soothing.
And then, after the last appointment, the new prescriptions, the cortisone injections, after the final restless night at the motel, there’s the seven hour drive back home. Mostly, the landscape does not change: bare-knuckled trees and barbed-wire fences, skeletal clouds drifting across an endless sky. Snow squalls pass like identical seasons, and sometimes we pull over to wait them out, and sometimes we do not. In the distance, we see dairy farms, Holsteins picking their way across frozen muck. A dog, coated in ice, lying dead in the median. A white cross hung with plastic flowers that have faded from red to fingernail pink. My mother fills the air with words as if she believes the right ones, the right combination, can somehow put everything right. I myself say less and less on these trips; I am exhausted, numb. But if I think, My stomach hurts, my mother’s hand pats her purse for the Saltines. If I need to use the bathroom, my mother says, “I think there’s a McDonald’s coming up.”
At the McDonalds, my mother pulls up to the side entrance. On bad days, she gets the wheelchair out of the trunk. On good days, she holds the door while I crutch the seven steps inside. There, I sink into the closest seat to rest while she goes back out to park the car. It’s another ten or so steps to the bathroom and, once inside, another five steps to the closest stall. Then another fifteen-odd steps back to the table, where I wait while my mother gets herself a cup of coffee. I’ve come to love McDonald’s, its regulated access, its reliable terrain. McDonald’s, an oasis of certainty, where there’s never a step to get inside, where I know the restroom doors will be wide enough for a wheelchair to pass, the stall big enough so I don’t have to pee with the door open wide to accommodate the chair.
Today is a post-cortisone day, a good day, and so I decide to crutch in. While my mother goes around the corner to place her order, I continue my Frankenstein lurch toward the nearest open table, telling myself not to be paranoid, nobody is staring, and so what if they are, so you’re on crutches, so who cares? The stares are less furtive than the ones I get when I’m in the wheelchair, when people run their gaze over my legs, then quickly glance away.
Scoping for parts, my brother calls it.
“My goodness, what happened to you?” A woman with three young children sits in a nearby booth. “Were you in an accident or something?”
I shake my head, keep going. These are the questions I’ve grown to hate, even without suspecting, yet, that they’ll follow me for the rest of my life like a complicated name, an alias I must live by. What’s wrong with you, what happened to you, what’s the matter? Sometimes they’re prefaced with, Do you mind if I ask you a personal question? Often they’re followed by a long account of another person’s health complaint: an accident, a bout of cancer, a recent diagnosis.
I take another step, another. The children stare, following their mother’s example.
“What happened?” she repeats. “Did you break your legs?”
I sit down facing the opposite direction, expressionless, pretending I haven’t heard. There are two kinds of pain: the kind that can be protected-the lump in the breast, the loved one’s death, the broken heart-and the other kind, the visible kind, the kind that, in my case, is the first thing people see. It’s right there, out in the open, where anyone might choose to poke at it, probe it, satisfy their grim curiosity.
“What’s wrong with that lady?” one of the children asks.
“Nothing a smile wouldn’t cure,” the woman says, in a voice I am meant to hear.
* * *
Hope is Dickinson’s “thing with feathers,” that transcendent little bird. It is also, as a doctor once pointed out to me, the very last thing in Pandora’s box.
Immediately after every appointment, after each new round of injections, I get an emotional second wind. I decide I am going to get well, right now, no more messing around. I give myself pep talks. So my doctor believes I have systematic tendonitis caused by an over-aggressive immune system? Well, cortisone suppresses the immune system; therefore, it is logical, it is inevitable, that the cortisone shots will work. I begin each day with positive affirmations. My doctor has described my tendonitis as a raging fire that must be contained, and so I imagine tall flames doused with cool water, sputtering out. I visualize myself healthy again, jogging on a beach, hiking down a wooded trail. Instead of watching TV, I discipline myself, make tapes of my school assignments, dictate papers to my mother. I write soothing haiku’s with titles like “The Moon.” I listen to Spanish language tapes, review my high school German. I phone the friends I haven’t heard from and leave funny, upbeat messages on their answering machines.
But as the days pass, and the cortisone wears off, I find that, once again, I am weaker, stiffer, more inflamed. It’s harder to get up in the morning, harder to move around the house, harder to make myself eat. Desperate little thoughts flicker at the edge of my steely attitude, and soon I am doubting once more, I am thinking, Is this never going to end? Thinking, What if I never get better? Thinking, What am I going to do? I consider suicide, but I can’t decide which would be worse-to cause my parents such terrible pain? Or to burden them with caring for me for the rest of my life?
My doctor asks: Is it really that I’m in more pain, or am I simply not tolerating pain as well?
I do not know. I cannot tell. My body does not seem to belong to me. That’s fine. I leave it behind whenever I can: through sleep, through daydreams, through a drifting, hazy vacantness.
My doctor recommends higher dosages of anti-inflammatories, orthotics, patience. Leg lifts and toe curls. Riding a stationary bike. Walking in a swimming pool. Only now, I’m unable to stay upright in water. I’m unable to complete more than a few full revolutions on the bicycle. The pain leaves me thick-headed, motionless, silent. I cannot sleep, and yet, I feel as if I’m never fully awake.
In March of 1987, he refers me to a pain management center in a separate wing of the clinic. There are pictures of Jonathan Livingston Seagull on the walls. There are rhyming poems illustrated with rainbows. People sit in a circle and talk about ways in which pain is merely an excuse for not living fully. If you want to move beyond pain, you must make a commitment to life! At the end of the meeting, everybody joins hands and admits they have no control over their pain, over anything. They bow their heads and turn themselves over to their Higher Power.
I say, Uh, just so I’m clear. You’re empowering yourselves by. . . deciding that you’re powerless?
The man to my left, whose hand I’d rather not be holding, assures me that it will all make sense after awhile. I have no doubt this is true, for the pain management center believes in “total immersion therapy,” and these people have been living here for three weeks with no mail, no phone calls, no outside contact. Such things are deemed “privileges,” and they must be earned by reaching “set goals”: giving up a wheelchair or cane, cutting back on medication. The man whose hand I’d rather not be holding has had chronic back pain ever since a fall. His face is ashen with the effort of sitting in his chair.
I tell my doctor the pain management center is not for me. He does not seem surprised. When he rubs his hand over his face, I believe he is nearly as frustrated as I am. I like him because, unlike other doctors I’ve seen, he isn’t trying to avoid me or get rid of me, which is what most doctors do when it becomes clear that a patient isn’t getting better. He is practical, helpful, considerate. Other doctors have noted how I struggle to pull up my foot after taking each step, a condition noted in my chart as “dropped” feet. This doctor promptly prescribes a leg brace that fits into my shoe and keeps my foot at ninety degree angle. It’s a small thing, but it removes my fear of tripping when I crutch, and I’m in a position to be grateful for small things.
“Let’s try one more round of cortisone,” he says.
The nurse swabs bright orange antiseptic on my ankles, on the inside of my legs, just above the knee, on my wrists. She tries to make me lie back on the table, but my doctor knows better by now, knows that I have to watch the needle, keep some semblance of control. He counts backwards with me as the cortisone goes in, a feeling of impossible pressure, a surge of heaviness pushing outward from within the points of my body that hurt most of all. And, afterwards, warmth. And relief that it’s over.
“Come back in six weeks,” he says. “If you’re still not responding, we’ll talk about other options.”
Other options: I have no idea what this means. But whatever these options are, I will take them, I’ll obey, I’ll be the model patient-not like I used to be.
Home again, I can’t stop thinking about the years leading up to my first medical leave: what I should have done, what I might have done, how I might have prevented all this from happening. If I’d taken a medical leave after my first year at Peabody, if I’d given myself even a month away from the piano, might that have made a difference in my hands? If I’d stopped jogging with friends, would my legs have healed by now? What if, after leaving the conservatory, I’d gone home to my parents right away instead of staying out east the way I did, working in Connecticut, Florida, Maine, scrambling to make ends meet? What if I hadn’t enrolled at the University of Maine, if I’d let college slide for awhile? If I’d seen better doctors when I’d first started to limp? If I’d used my crutches consistently instead of cheating, forgetting to bring them with me, finding reasons to leave them home?
I think about how there was a time in my life when I believed that having to give up the piano was the worst thing that could ever happen to me. I think about the Conservatory, and my friends there, and the rhythms of my old life. I think about the new life I’d tried to make for myself in Maine. I joined a birdwatcher’s club, but could not keep up on the hikes. I enrolled in an evening dance class, flung myself around, told myself not to be such a baby, nothing could possibly hurt this much. The pain, I told myself, had to be all in my head. I would get on top of it by sheer force of will. Then, one night, I was truly afraid I might not make it home. I stopped to rest on benches, on retaining walls, coaching myself along: three more blocks, c’mon, just a little further.
The first campus doctor I saw prescribed the same anti-inflammatories that the doctors at Peabody had recommended. These anti-inflammatories had given me gastrointestinal problems when I’d taken them before, but campus doctor said I’d have to deal with it, it couldn’t be helped. He also prescribed vitamins. I was, he said, “shockingly” weak. How long had it been since I’d stopped exercising? This, he told me sternly, was only making my problems worse. It was important to keep moving, to do low-impact exercises, to swim at the university pool. When he heard that I’d spent my childhood at the piano, the past two years in a conservatory practice room, he’d shaken his head. “We’ve got to get you in shape, young lady,” he said. “Your ankles are so weak that I don’t see how you can stand.”
He gave me a pair of crutches, demonstrated how he wanted me to use them. The prescription was for three weeks.
I forced myself to crutch briskly to the end of the block, then sat on the curb, arms and legs burning. It seemed as if a week couldn’t pass without the realization that there was yet another thing I couldn’t do without pain: hurry across the street as the light changed, climb stairs, walk between classes without stopping, keep up taking notes. The anti-inflammatories smoldered in my stomach. Nights, I lay awake thinking, What the hell is the matter with me? Thinking, I can’t believe this is happening. Thinking, I must be losing my mind.
* * *
There is a period of time, after a someone falls ill, when the world is acutely sympathetic. Friends visit, acquaintances phone; co-workers not only offer to help, but sometimes, they actually do. People collect anecdotes about others who have overcome illness and misfortune and present them to you like spectacular bouquets: hopefully, nervously, sincerely. They are evidence that your own troubles are not insurmountable. They are proof that it’s only a matter of time before you, too, will be back on your feet. Your sick room grows thick with these invisible flowers. You inhale their strange perfume. You study their untarnished petals, their pure colors, and you notice that, like artificial flowers, they are too neat, too orderly. Each is the exact same size and shape. Each is too regular to be real.
These anecdotes follow the Aristotelian model of story-telling, the one you had to memorize in high school, the one to which every work of fiction you discussed got strapped, howling, like a martyr to a rack. Each begins with an inciting incident: a mysterious seizure, a freak accident, an inexplicable symptom. This is followed by rising action: the trip to the emergency room, visits to specialists, moments of doubt and despair. Finally, there is a climax: the surgery or treatment, everything touch and go. If there is a supernatural element to this anecdote, it’s likely to appear at this point: a tunnel of light, the voice of God, the appearance of an angel. And at last, comes the denouement: a resolution, a cure or, failing that, a clear prognosis, a lesson learned.
But what if your story shapes itself differently? What if there is no climax, no resolution, only the passing days, the paralyzing uncertainty, the gradually dawning sense that, regardless of what happens next, you will never return to the country you have left, to the body you once took for granted? What if things simply happen because they do, and then you pick yourself up, or not? What kind of story is that?
When an old friend from Peabody flies in for the weekend, she takes one look at me and says, Oh my god, before she can stop herself. Both of us laugh, but soon the conversation thins. I am unable to do the things that formed the backbone of our friendship-going out, going dancing, going shopping, going to the gym. Going. We met the day we moved into the dorms at Peabody and for two years, we saw each other every day, studied together, performed together, spent vacations with each other’s families. Even after I left Baltimore, we spoke on the phone, mailed each other silly photo-essays of our lives, shared spring breaks in cities like New York and Washington DC.
During the fifteen months I’ve been home, inert, Susan has kept moving. She is auditioning for graduate schools. She has two lovers, each a secret from the other. She keeps asking, What are you going to do? She is the daughter of a psychiatrist, and she says that if there was really something wrong with me, something organically wrong with me, the doctors would have figured it out by now-wouldn’t they? A minute later, she’s telling me about somebody who died of cancer only months after the family doctor had dismissed her with a prescription for Valium. Maybe I should come out East again. Maybe her father could recommend a diagnostician, a neurologist, a rheumatoid specialist.
“I’m at one of the best clinics in the country,” I say. “I’ve already seen every kind of doctor.”
Susan rages. She shines with indignation on my behalf. How can this be happening? She paces the bedroom, runs her hands through her pretty, cropped hair. I try to keep up, to pay attention, but pain makes it hard to concentrate.
“What?” I say, and she says, angrily, “You aren’t even listening to me!”
On the second day, we go to a movie. She has to load the clattering wheelchair in and out of my mother’s car, and we both pretend it’s perfectly natural for her to be driving that car instead of me. She has to push me into the theatre, sit with me in a folding chair behind the last row of seats, where the manager makes us sit because of “fire regulations.” A group of teenaged boys, not much younger than we are, are already seated nearby. They stare at me, then at Susan; they whisper among themselves. As soon as the lights go down, they begin, in falsetto:
“Je-sus, heal me!”
“O, Lawd, help me WALK again!”
One of them asks the others in a loud, clear voice: “How do you eat a vegetable?” But I already know the punch line: “Crawl under the wheelchair.” These boys, it seems, are everywhere, like Dutch Elm disease, like mosquitoes. They make jokes, talk in falsetto. They roll down their windows to shout things as they drive past in their cars; they holler from their fraternity porches, Hey, sexy! Yeah, you! Got a boyfriend? For awhile, I’ll try to imagine these boys as infants. I’ll try to imagine their mothers and fathers, who must love them. But eventually I’ll get sensible. I’ll imagine burying a hatchet between their eyes.
We leave the theater early, drive home. Susan helps me into the house. That night, in the double bed we’ve shared comfortably and easily during past visits, she hugs the edge, keeping even the warmth of her body from touching my own. Or maybe it’s me who has become so distant I cannot feel her near me. A few months later, she phones to let me know she’s been accepted at a graduate school in Chicago, just a few hours away.
“It’ll be great!” she says. “I can come up and see you.”
But she doesn’t send me her new address, doesn’t reply to the letters I send to her over the summer in care of her parents’ address. Still, it takes awhile before I understand I’ll never see her again.
* * *
In April of 1987, when I phone my doctor for our scheduled consultation, I tell him that things are still getting worse. That I’m weaker, more inflamed. My doctor does not seem surprised, and I sense that something has changed. Usually, he voices my own frustration, my own disappointment, then urges me not to worry. These things can be stubborn, he says. He assures me that he’s seen worse. But this time, after a careful pause, he tells me he has discussed my case with a new doctor, a neurologist I haven’t yet seen. This neurologist would like to meet with me as soon as possible. This neurologist will be coordinating my case from now on. This neurologist feels the abnormalities in my nerve conduction studies are not a result of surgical damage, but a systematic muscle disorder of some kind. He has reviewed my last MRI and would like me to have another. It is obvious that the current treatment isn’t working.
The time for other options has arrived.
“So-if the cortisone hasn’t worked,” I say. I have learned that if you pitch your voice low, it is nearly impossible to cry. “I mean, I’m almost twenty-three and I still don’t know-”
He’s a doctor who does not interrupt.
“I just don’t know how I’m going to wait any longer,” I finally say.
My doctor says he agrees, that there really is no point in waiting anymore. It could be years before I have a firm diagnosis. It is time to think about a motorized wheelchair or scooter, something I can use independently. He’ll set me up for an evaluation to decide what kind will work best.
“Ultimately, it’s your decision,” my doctor says. “But I think we have to look in this direction. Get you moving again, get you back in school.”
A thought forms itself in my mind, floats there like a dust mote, detached: so this, then, is what my life will be.
We schedule an appointment for the following week.
* * *
One of my uncles used a wheelchair, a result of complications from diabetes. He was a smart, funny, opinionated man, an avid fly-fisherman, an accomplished amateur photographer. He and my aunt and their children were always doing interesting things: visiting national parks and historic sites, camping, canoeing. In my family, “vacation” meant a long weekend at a Holiday Inn, my brother and me circling our mother in the pool like frenzied sharks, shrieking, “Mom, look at this! Watch me!” while our father napped in the room. But my uncle’s family was different. He, like my aunt, had a college degree. They owned things like binoculars and wild-life guides. They built camp fires and made S’mores, and if they caught a fish that was too small, they actually threw it back, the way you were supposed to, instead of smacking its head on a rock so that you wouldn’t wind up catching it again.
One day, when I was eight or nine, the subject of my uncle’s wheelchair came up among a few of my older cousins. They were smoking pin joints in the orchard, passing a can of beer back and forth as we younger ones looked on with love and longing.
“If I had to be in a wheelchair,” one of them said, “I’d kill myself.”
And all of us agreed.
Alone in my room, I stare at the folding wheelchair we’ve been renting. At my crutches, at my leg braces, which my mother calls my “ducks,” leaning up against the closet door. At the wobbly card table. The electric typewriter. A few battered paperbacks from the library which I don’t read because holding them open, turning the pages, inflames my arms and hands. Even now, after all this time, there’s a part of me that fully expects to wake up one morning and find myself fully healed. To walk out of this house and back into my life as if nothing has changed. A part of me is still waiting for a clear diagnosis, a prognosis, a plan. But I could wait here forever, hoping for that story and all its validations. Seeking a reason, an answer, the climax, as my life shrinks to fit the confines of this room. My body shrinking, too, growing passive, lighter, empty.
I think of something my father told me: how, at six foot one, he’d been down to 130 pounds before he entered the san.
“What did you do?” I asked, unable to imagine him that way.
“What did I do,” he repeated. He was standing in the doorway, his shoulders bristling with light. He raised his hands in a shrug. “What did I do.” Then, abruptly, he laughed.
“I stayed out of the wind,” he said.
I am learning a technique I will rely on when I start to write fiction. I am exploring one thing by looking at another. Describing the absent landscape which defines my subject’s shape. The brightness of the light from the hallway that outlines my father’s up-lifted hands.