Limbo (4 page)

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.

M
y mother could
turn anything into a story. Nights, when she tucked me into bed, she'd ask me what color kiss I wanted, then wait while I tried to describe what I saw. A red kiss, bright as a zinnia. A fat, orange kiss, like the fish in its bowl. Earthworm kisses that tickled and twisted, slid down the back of your neck. “What color kiss tonight?” she'd say, after listening to my prayers, and I'd try to come up with something new, a color I'd never tried before. A kiss the color of the palm of my hand. A kiss the color of my grandmother's hair. My favorite kiss was exactly the color of the sky before a storm, smoky blue with purple streaks along the horizon, but this kiss took a lot of time
and my mother could only deliver one if her papers were all graded and her lesson plans finished and the housework reasonably under control. Then she'd wrap me tight in the blankets, roll me to and fro like the wind, lift me up and drop me like thunder on the bed. The rain was her fingers up and down my back. The purple came afterward, the pressure of her hand on my forehead. And then a blue whisper over my hair, soothing, smoothing, stroking the clouds away.

At the piano, my mother spoke not of sound but color, not of notes but what the chords might stand for, what they made me feel. My brother preferred to sit under the piano, working the pedals with his hands, while my mother and I sat together on the bench, telling stories on the shining keys. Perhaps she picked out a swervy melody as I knuckled the black keys into frenzy. Or we might take turns mashing the white keys with the palms of our hands, a line of broad, flat stones. Sometimes I'd choose a song from one of her old music books. “Spinning Song” or “Tarantella” or selections from
The King and I
.

“Play this one,” I'd say, pointing to a measure. “Play this one.” And I'd play back what I heard.

When I was seven, I started formal lessons. My first assignment was a series of rhythmic variations on “Twinkle, Twinkle, Little Star.” The most difficult one went
da
-da-da-da,
da
-da-da-da—Think of
rutabaga, rutabaga
, my teacher
said—and when I finished, my wrists ached all the way up my arms. I remember my surprise. I'd never guessed, watching my mother, that playing the piano
hurt
.

“Shake it out,” my teacher told me in her lovely alto voice. “Thatta girl. Shake it all out.”

I rode my bike home through a canopy of elm trees, weaving between the puddles of sunlight scattered across the sidewalks. That night at the piano, my mother listened to what I'd learned.

“The rutabagas hurt me,” I explained, holding out my hands. My mother cupped them in her own, studied them very seriously. Then she covered them with kisses the cold, clear color of ice.

 

In my family
, no one complained about a cut, a bump, a bruise. “Anything broken?” the nearest adult would say if you tripped and fell. “No? Then what are you crying for?”

Illness was something to be hidden. If it was discovered, you still went to school or to work, of course, but when you got home you were quarantined in your room, so whatever you had wouldn't spread. All it took was a sneeze to rouse my father's suspicions. “You catching
schnupe
?” he'd say. My brother and I would deny it fiercely—who wanted to be isolated from the family room TV? At school, kids ran the water fountain twice, to kill the germs, before taking a drink; in the bathrooms, we put toilet paper on the seats
before we sat, the way that our parents had taught us, so we wouldn't catch some sex disease. Cleanliness was next to godliness. The moment we got home, we washed our hands with hot water and soap. We washed them again before meals, and one last time before bed. You just couldn't be too careful.

Ringworm, on the other hand, wasn't so serious. Everybody had that. You just soaked a couple of Band-Aids in kerosene, plastered them on, and left them there as long as you could stand it.

Pinworms passed with enough castor oil; pinkeye with saltwater flushes.

Doctoring people wasn't much different than doctoring livestock, and anyone could do that.

Sore throat? Take a hydrogen peroxide gargle.

Head cold? Hot whiskey punch with lemon and sugar.

Fever? Ice bath, if it got high enough. Otherwise, drink lots of water and for Chrissake sake, don't eat
anything
.

Toothache? Chew on the other side of your mouth and see if it don't get better.

Earache? Lie on a warm heating pad, or else ask Uncle Artie to blow a little warm cigar smoke in there.

Sprain something? Well, don't step on it, silly. Keep your mind off it, keep busy, forget about it. At night, make up a plastic bag of ice, wrap it in a towel, and take it to bed.

Headache? “Stick your head in the toilet for ten min
utes, my father would tease. “I guarantee you won't feel a thing after that.”

There was no such thing as mental illness. There was
craziness
, of course, but there really wasn't any cure for that.
Character flaws
such as moodiness or laziness could be easily relieved by doing something nice for somebody else, getting your mind off yourself, thinking about those less fortunate. A smile's just a frown turned upside down. Nobody saw a psychiatrist, except on TV.

My mother accidentally dislocated my shoulder once while she was playing with me, swinging me in circles by my outstretched arms. When I cried, she scolded me for acting like a baby—my arm looked fine, there was nothing the matter with me. Alone in my room, I felt it pop back into place, but then it swelled, and we wound up at the emergency room. By then, my mother was beside herself, but when the X rays came back, we were both a little embarrassed. We could have saved ourselves the trouble, the expense. A couple of days on the heating pad, the way my father had suggested, and it would have been fine.

Several years later, when I knocked myself unconscious practicing gymnastic flips, the first thing I did after coming to was beg the other kids not to tell. Around that time, my mother, on a dare, ran the school's annual thousand-yard dash alongside her students. The next day she was hospitalized; she'd had pneumonia, it turned out, for nearly a week.
“I'd been feeling really lousy,” she admitted. “I thought it was just me.”

Cancer, on the other hand, you didn't mess around with. If you found a lump, you didn't tell a soul. You didn't even say a word like that outright. Nobody knew exactly how you caught it, so if somebody's mother or father had cancer, you weren't allowed play at their house, though you could play in their yard where there was plenty of fresh air.

This was rural Wisconsin in the 1970s. Farmers, and the children of farmers. Germans and Luxemburgers and Czechs, Italians who'd worked in the local quarries at the turn of the century. Dutch who drove cars that sported bumper stickers boasting IF YOU AIN'T DUTCH, YOU AIN'T MUCH. No blacks. No Jews. A few families from the Philippines. Everybody knew who was what. It was the second, question you asked at school, right after What church do you go to?

At my elementary school class graduation, awards were given for Best Attendance. I coveted that prize, but my best friend, Tabitha, won. She'd come to school despite strep throat, several colds, the stomach flu (though she'd been confined to the nurse's office), and a case of chicken pox cleverly concealed beneath a turtleneck sweater.

 

My parents grew
up on dairy farms less than ten miles apart, the grandchildren of Luxemburg and German immi
grants. At sixteen, my father left high school to farm full time with my grandfather, and it was common, in good weather, for the two of them to work sixteen-hour days. After marrying my mother, my father threw that same energy into selling fertilizer and, later, farm machinery, traveling for the Gehl corporation on marathon routes throughout the Midwest, saving money to start his own company. He came home every weekend, but he was something of a stranger, distant, unfamiliar with our household routines. Saturdays, he worked at his desk in the family room, going over ledgers as the adding machine chimed its toneless song. Sunday nights, before he went back on the road, he spread newspapers over the family room carpet and polished his wingtips with an old diaper. My brother and I watched, curious but shy, inhaling the deep sweet smell of the polish. If we asked whose diaper it had been, my father sometimes said, Ann Manette's, calling me by my full name, the name of my childhood. Other times he'd say,
Michael's
. This lack of consistency both fascinated and frightened us, for our mother was exacting in her answers, no matter how foolish our questions, and no matter how many times we asked.

Mostly, on those weekends my father was home, my mother kept us occupied with projects in the kitchen, away from his desk, away from his briefcase with its tempting, snapping locks. Or she took us out to her mother's farm
where, likely as not, there'd be a handful of cousins and second cousins swarming the rusty swing set by the chicken coop, a couple of aunts plus a distant relation or two playing Scrabble in the kitchen, uncles watching TV in the living room. Grandma Krier not only welcomed us; she expected us. A weekend with less than a dozen visitors was considered a lonely weekend indeed. And you always showed up with room in your stomach—there was no point in protesting that you'd just eaten.

Grandma Krier's cavernous refrigerator was crowded with bottles and tins, stacks of wrapped platters, Tupperware containers of all sizes, mysterious lumps of foil, soft cheeses, bean salads, jars of raw whole milk with the cream thick at the top, and—in summer—zucchini breads and cakes, not to mention raw zucchinis, which always seemed to multiply in the crisper. A pungent, not wholly unpleasant odor rose from the racks when you opened the refrigerator door. Sometimes, my mother would have me lure my grandmother out of the house, and then she'd sneak into the kitchen and throw out what she called
the questionables
. The basement root cellar was overflowing as well, the bins filled with onions, apples, pears, potatoes with sprouts as long as my arms. Once, on a shelf behind the old wringer-style washer, I found a box of murky preserves dated 1955.

For years, Grandma Krier worked as head cook at the
community center in Belgium, supervising wedding suppers and graduation banquets, funeral receptions and family reunion brunches. Before that, she'd cooked for her family of nine children, plus whichever of the “city cousins”—an assortment of relatives from Milwaukee—happened to be visiting. Summers, these numbers swelled further with the “trashers,” threshing crews made up of local farmers who took turns working one another's fields, cultivating in spring, bringing in the harvest at summer's end.

“I don't cook small,” she'd say, “because it just looks wrong in the pan.”

My mother was the baby of the family, the youngest of seven sisters and a much awaited brother who'd arrived next-to-last—
just as we'd given up hope
, according to family lore. All had married and were busy raising children of their own within a twenty-mile radius of my grandmother's farm. I had sixty-odd cousins and over a hundred second cousins, and it seemed that I saw at least a third of them every weekend on the farm. When the house got too full, we kids were sent out to the barn. Winters, we played hide-and-seek on the upper level where the heavy machinery was stored, or else we climbed the ladder to the hay mow, where we swung on the rope swing, or hunted for mouse nests, or stacked hay bales into spectacular, multiroomed forts. Outside, we sledded on my grandmother's dead-end
road, which had two hills: one good, one better. Summers, we moved out into the surrounding fields, building forbidden forts in the corn, hunting for arrowheads between the rows of soybeans. We picked cherries and mulberries, asparagus and rhubarb, and when the spray-trucks came by to douse the apple orchard with pesticide, we concealed ourselves in the branches, weathering each blast, a game we called
Hurricane
. On rainy days, we set up dominoes in the sour-smelling milk house, played crazy eights or slapjack beneath the shelter of the porch awning. My grandmother would have happily provided us with a midafternoon snack, but my brother and I preferred to sneak into the basement through the root cellar door and raid the apple bin, the pantry—just as our mother had done.

Our mother had loved farming as much as our father had hated it. (In junior high, when I asked for horseback-riding lessons, he refused, saying, “Don't you see I work like I do so you won't ever need to mess with things like that?”) Though she'd graduated from a Catholic women's college, and now taught fifth grade, her arms were still thickly muscled from fieldwork, her shoulders broad from lugging buckets of milk, bales of hay, sacks of feed. Her father, my Grandpa Krier, had died in a farming accident when she was two, and my grandmother had managed to keep the family's one hundred acres intact with only the help of her children, plus a hired man named Irwin. Summers, Irwin
preferred the barn to his room in the house, and, at night, my mother and her sisters watched him from an upstairs window, following the glow of his cigarette as he passed in front of the open barn door. He liked to go out for a drink once in a while. He put ketchup on everything, from eggs to bread. His cigarette butt smoking on a nearby saucer. His cough like a private language.

“But when was his birthday?” I asked my mother, pressing for more, always more. Irwin had died of emphysema the year before I was born.

“I don't know,” my mother said, but I wouldn't accept this, couldn't. At ten, I still believed my mother knew everything. It was a belief I'd cherished, protected, long after I'd stalked and killed the Easter bunny, the tooth fairy, Saint Nicholas.

“What was his favorite color?” I demanded. “What was his middle name?”