Limbo (2 page)

T
his 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 Mon
ica, 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 conduc
tion 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.