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 a while, 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, 1955.”
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 reinvent 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 breadwinner, 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 aftereffects from a concussion I had when I was twelve. I have systematic tendinitis, fibromyalgia. I have a chronic pain syndrome, a rheumatoid disorder, sympathetic reflex dystrophy, peripheral neuropathy, a reaction that harks back to an overprescription 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, MRI’s, 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 B vitamins. 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 restart 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 “chronic tendinitis” 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.
There months pass as I wait for an opening at the Mayo Clinic in Rochester, Minnesota. 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 buses 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 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, outpatients glancing at watches and maps, inpatients 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, fish-eye mirrors mounted near the ceiling let you see who or what is racing toward you—an 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 a 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 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.
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 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 McDonald’s, 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 rest room 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 postcortisone 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 tendinitis caused by an overaggressive 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 tendinitis 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 awful, earnest haiku 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 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 a while. 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 hands 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 backward 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, afterward, 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 the Peabody Conservatory, 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 a while? 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 bird-watchers’ 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 the Conservatory had recommended. These anti-inflammatories had given me gas-trointestinal problems when I’d taken them before, but the 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 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 sickroom 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 the Conservatory 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 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, we spoke on the phone, mailed each other silly photo-essays of our lives, shared spring breaks in cities like New York and Washington, D.C.
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 theater, 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 fraternity porches, Hey, sexy! Yeah, you! Got a boyfriend?
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. It takes a while before I understand I’ll never see her again.
In April 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 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 I 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 wildlife 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 that 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 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, his weight had fallen to 125 pounds by the time he entered the san.
“What did you do?” I asked, unable to imagine him that thin.
“What did I do,” he repeated. He was standing in the doorway, his shoulders bristling with light; he raised his hands. “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 that defines my subject’s shape. The brightness of the light from the hallway that outlines my father’s outstretched hands.