Shirts were especially difficult. The brace had numerous gadgets and straps. One white strap cut across my abdomen, another attached to the bars just above my clavicle and would peek out from low-necked shirts. Even in summer I wore turtlenecks and scarves. The material had to be thick or it would shred against the brace. Eventually my shirts sported balding patches at the right shoulder blade; these would give way to tiny holes. I loved glitter, gauze, Indian prints. I wore flannel, smocks, cotton pullovers. I rolled the sleeves back so they would stay. My earrings clicked against the brace’s metal neck ring, so I gave those up too, trading them in for gold “starter” posts.
Sleeping was the most difficult thing of all. The neck ring and molded plastic rest at the back of my head prevented me from lowering myself directly onto my pillow; instead I made a mound of pillows, high and soft enough to sink into. If I rolled over during the night, the weight of my brace often woke me. I slept intermittently, beginning a lifelong struggle with insomnia. I turned on the bedside lamp and read deep into the night. Blue crescents formed beneath my eyes. I became sluggish—what did it matter, I could barely move. A soap-bar shaped piece of plastic pressed continually into the small of my back. Since I couldn’t bend, I needed to sit in straight-backed chairs. I could not look down, nor see in any direction except straight ahead unless I turned my entire body. The metal desk-chairs at school provided little support—an oval back rest maybe eight inches high, an armrest for right-handed students only. To read or write I needed to lean far forward in my chair. My right shoulder blade chafed against its suspender, becoming red and sore. The corset left welts on my hips. Like a car, I would periodically check into Buxbaum’s garage for “adjustments” but I never felt adjusted, not for a single day.
The idea of a brace “fitting” is in a sense anomalous, as the purpose of a brace is to mold the body to its own contours. My right hip protruded too far, my chin not far enough. Alternately I would thrust my chin forward onto the chin rest or tuck it against my neck to avoid the offending piece of plastic altogether. Doing so, I pictured myself a turtle, retreating into its monstrous shell. But I also felt safer, less exposed. Because I was constantly on display. Children pointed. Old women, my grandmother’s friends, clucked sympathetic sounds. Strangers felt free to question me: What’s that thing for? How long do you have to wear it? Do you sleep in it?
At meals I could not bend to my plate, but had to raise my utensils level to my mouth. I made messes. My mother’s husband complained. Eating became unpleasant; besides, the corset sat heavily on my stomach. I ate small portions, skipped breakfast and lunch. Were it possible, I suppose I would have shrunk myself small enough to disappear entirely, slithering like Houdini from my shackles.
But in another sense, I was already invisible. For what people saw was the brace, not the object locked up inside. There are metaphors for this. Rapunzel, Sleeping Beauty—the princess imprisoned in the fortress. Snatched from the world by some calamity, she whiles away her youth, unperceived and unperceiving.
I thought about this and rejected the metaphor. I did not see myself a damsel in distress. But the male gaze—is there any force more potent to the adolescent girl? The messages we received through television, advertisements, fairy tales, movies, music—especially music—encouraged us to define ourselves in its beam. Mick sang “Under my thumb,” Robert Plant sang “Shake for me, girl,” Steven Tyler sang “Beg for my big ten inch.” The boys in school were gawky and gross. They punched each other and belched; they made rude noises. Still, we were told, they and their older brothers mattered. A girl unremarked on by boys suffered more than a lack of stature. In a sense she ceased to exist.
Though I was cloistered, I was not the damsel in distress, the sweet, coveted thing. For one thing, I was too angry—full of silent “fuck yous” from morning till night. And then, well, there was the physical fact of me. Sleeping Beauty did not have a crooked spine. Rapunzel did not wear a brace. Either one could likely have elicited an appreciative belch from a fourteen-year-old boy. I was, however, locked away like them, subject to some awful power beyond my comprehension. Extending the metaphor, did that make my mother the witch? I suppose I must have thought so. After all, it was she who locked me in at night after my shower, that one-hour slice of freedom I enjoyed. She whose job it was to keep me caged: No, you may not go to the beach, take it off for So-and-so’s party, yes, I know it’s difficult to sleep, but.
How she must have hated that role. Trapped between the warring needs of her husband and daughter, stubborn creatures both, unwilling to bend, she now had the added burden of enforcing my confinement. I wheedled and begged: One half hour more, let me sleep without it, just tonight, look at this rash, my skin can’t breathe, c’mon! I raged: Why do I have to wear this stupid thing, so what if my spine’s a little crooked, who cares? I was sullen, resentful; I was thirteen and did not know how to make things easy even in easier times.
Recently, in a manila envelope stuffed with old family photographs, I came across a yellowed sheet of paper, typed on both sides and folded into quarters. I thought it must be some ancient draft of a story I’d abandoned and, curious, I began to read:
I feel the urge to write about the fears, anger, comic moments, and joy we experienced and hope this story may strike some familiar chords or help those about to face a similar situation.
An intelligent girl, shy in school, demanding at home, Pat at thirteen had too many adjustments to make at once. Adjusting to my remarriage, adjusting to junior high school, and adjusting to wearing a metal brace from hip to neck. Just when boys and awareness of her body loomed large on her horizon, POW, the doctor stuck her in a shiny metal contraption. The worst affliction that can occur to an adolescent: to be made to appear “different.” It didn’t help that I made allowances too often for these problems.
This was the opening to an English paper my mother had written some thirty years earlier for a university night course.
My mother hates to write. She’ll barely email. On the rare occasions she has to compose something more complicated than a thank you note, (the last occasion being a letter to the editor of her local paper) she’ll call me to ask if I’ll look over her notes, fix things up, make them sound “elegant.” Invariably she’ll hand me something that sounds like her own voice: thoughtful, articulate, immediate. The kind of voice many writers—myself included—struggle to attain. You’re a natural, I tell her but No, she says, it’s just too plain.
Knowing this, I can sense how difficult this paper must have been for her to write. Words are crossed out, typed over. Shorthand symbols and abbreviations are penciled in the margins. The page resembles a neater version of my own heavily edited drafts. Toward the end, the draft devolves into a series of fragmentary notes: Mention friends. J. Given the topic, my mother’s attempts to frame her thoughts on paper would have been particularly fraught.
As I read, I felt increasingly uncomfortable, as though I were invading my mother’s privacy. And it was unnerving to see myself presented so bluntly in someone else’s narrative. (Of course I plead guilty to mining the lives of family and friends; as a writer that’s my “job.”) Yet this is my mother’s story, too. I found the writing compelling for the insight it shed onto her perspective. What were these “joys” she mentions? I survived to write this piece, using past tense verbs. (We lived through it, she writes, that is enough.) By including me in the plural pronoun, she implicates me in her point of view. But the joy I recall occurred much later, when I was once again able to feel the sun on my body, sleep through the night, sit without pain. It was the joy of release. What, I wondered, were the “allowances” for my “problems” that my mother felt she made? How did she see this time? How did she manage?
I filed the paper in a folder with my medical records and the notes I’d begun to accumulate about causes and effects of scoliosis. Among other things, I’d discovered a link between spinal curvature and bone disease.
Bones, of course, are strengthened by
exercise, calcium, Vitamin D. Once braced, I was excused from gym. I became lax about physical therapy. The whole point, as I saw it, was to prevent me from being braced, so why bother? I ate little, stayed indoors. The brace’s metal parts heated quickly in the sun. I sat out summers in my air-conditioned bedroom. I read and studied more than ever, made the Dean’s List, getting A’s even in subjects I did not like. If I could not be a body, I would be a brain, nothing less, nothing more.
I’d begun my research in a state of uncertainty. I knew by my doctor’s initial reluctance to authorize a bone density test that I was “different,” that I fit into some minute category that encompassed my brittle bones, my crooked spine, my wayward walk; that these impairments heightened my natural tendency toward introspection and solitude, a rejection of things physical which, in some circular fashion, had put me at risk for bone loss. I was angry at my bones. Why not lose them; they’d given me so much trouble? Why not become a brain in a jar or, better yet, a sprite—Ariel, Tinkerbell, Quisp the Cartoon Martian, androgyne, nearly bodiless, completely free? I had so many questions—about the nature of disability, about the body/mind dichotomy, about how disability shapes identity and what happens to that identity when physical difference disappears. Writing let me grapple for answers. I wanted to understand why I broke down crying when my doctor told me I had bone disease. Her diagnosis had made me feel vulnerable and afraid. Why was this so threatening? How had my experiences with scoliosis shaped my reaction—shaped, in a larger sense, the person I had become? These were the things I wanted to discover.
I decided to mention the English paper to my mother and tell her what I was working on. This, I knew, would not be entirely easy. I’d made a decision to dwell on a difficult period of my life, difficult not just for me, and now I wanted to drag my mother back there, to glean whatever insights she might have, use her memory to prompt my own. It was, I realized, a selfish decision and yet it felt essential.
Allowances
My mother has no memory of the English paper. When I show it to her she peers at the yellowed sheet, turning it over, running her finger along the heavily penciled notes. Then she refolds it, returning the past to me.
What does this mean? I ask. You made ‘allowances.’ What ‘allowances?’
Oh, honey, she says. That was so long ago. You had a lot of . . . issues. A fresh mouth. Stubborn. People—Tom, my mother—said I spoiled you, let you have your own way too much. They didn’t try to understand. You were so unhappy—who wouldn’t be?
As much as possible, I avoided my mother’s new husband. His dislike made me nervous. When he entered a room, I would leave. When his car pulled into the driveway, I would go upstairs. Sometimes, though, I wouldn’t hear the car. I’d be in the den, deep in stereo fog, listening to Led Zeppelin or the Stones. Eyes shut, headphones clamped tight, I’d startle as the dial spun to the EZ Listening station. Without a word, Tom would yank the headphones from the jack and walk away.
At night I could hear them. She’s thirteen. You’re the adult. She’s in a brace, can’t you just? And Tom’s words—attitude, straighten up, spoiled. From an economic perspective, I suppose that was true, I suppose I was spoiled. Because my mother had married an attorney, the son of a judge, we were no longer struggling, no longer a household headed by a single woman with a high school education. To help me sleep in the brace, my mother had bought me an air-conditioner. Later I would have my own phone, appointments with orthopedic surgeons at elite hospitals, private duty nurses, new clothes to fit my changing shape as I went in and out of braces and casts. It was my mother who paid for these things, but she was able to do so only because someone else now paid the mortgage and covered our household bills. As an adolescent, I never really stopped to consider this, never thought about how much worse things could have been without Tom’s income to soften my physical discomfort. Overnight we’d gone from scarcity to plenty. I took our new status and the things it bought for granted. What was money for if not to live well?
My mother bought me a stereo, one with bubble speakers, albeit no headphone jack. Music was one of the few things that took me out of myself, and she let me play it louder, I suspect, than if I hadn’t been braced. Her new husband believed in rules, deference, bedtimes. I’d never had a bedtime. So long as I remained on the Honor Roll, my mother didn’t care when I went to bed. “Sack Time, USA!” Tom would proclaim night after night. I’d glance at Chipper contemptuously as he scurried into his pajamas. He wanted to be liked. I wanted to watch Don Kirshner’s Rock Concert—downstairs, on the color TV. I stayed where I was. Tom spoke white noise, words I did not heed. My mother, I knew, would back me up.
For Christ’s sake. Let me raise my own kids!
They fought about family. About politics, money. Unlike Tom, my mother had grown up poor. Her mother had left school at fifteen, going to work in a dime store after her father was fatally scalded by a laundry room boiler. During the Depression, she picked cherries on a Michigan farm. My mother’s father joined the Navy right after high school. It was the GI Bill that vaulted him and his young family into the lower reaches of the middle class. Early in my grandfather’s life his parents divorced and he spent his childhood moving from rooming house to rooming house. He’d come home from school to find the boxes packed, his mother one step ahead of the landlord. My grandfather’s job was to carry the family’s lamp.
My mother, too, spent much of her childhood moving: Milwaukee, San Francisco, San Jose, Brooklyn, Long Island, Bridgeport, wherever her father was stationed. After the war, they moved from Brooklyn to a prefab housing development on Long Island. Little shitboxes, my grandmother called these houses. She hated Long Island—the soggy potato fields that were slowly being drained and parceled into suburban lots, the look-alike homes, the lack of transportation, the long walk into “town,” which was little more than a general store and a post office. To make things worse, her husband was soon reassigned to the naval base in Boston, increasing her sense of isolation.
This was when her drinking began in earnest. My grandparents separated, sending their two daughters into foster care with families that ranged from indifferent to hostile. My mother and aunt lived out of suitcases in strangers’ spare bedrooms. When, after nearly three years, their parents reconciled and my grandfather was reassigned to Panama, the entire family went with him. By now my mother was entering high school, a bright, vivacious girl who loved parties and clothes. She had two skirts and three blouses—all sewn by her mother.
It was in Panama that the first tremors of my grandfather’s Parkinson’s disease began. A taciturn man, he confided to my mother that he was afraid—something was happening that he did not understand and could not control. He put in for a transfer and was reassigned to a desk job in Bridgeport. It wasn’t long before he was unable to work, taking early retirement and disability pay.
Meanwhile my grandmother swung into action. Her youngest child, born after the reconciliation, was starting school, her oldest graduating, no reason to stay home. She got her GED and began studying for her beautician’s license—manicures, pedicures, leg waxing—practicing at night on my mother. They were a family of five in a two-bedroom house. My mother shared a room with her sister. Their brother slept in the upstairs hallway and the girls had to walk through his “room” to reach their own. (Years later my brother would sleep in this same hallway, outside my bedroom, my mother’s old room.) There was one bathroom.
At night, home from her job cashiering at the A&P, my mother would help make dinner. Each night the same. Her brother, hungry, wanting to know when he can eat, who will go over his homework. Her mother with her feet in a bucket of Epsom salts. Tired from standing all day, she’s downing a Manhattan. The table needs setting. Her sister—where is her sister? Has she borrowed a scarf again, a favorite sweater that she will return soiled? Perhaps my mother has a date, is in a hurry. She hadn’t asked to be the oldest, to have to do these things. Her father’s speech has become slurred, difficult to decipher. H
is shuffling gait. It will not get better.
The chance of my mother going to college was zero. College was where you went to get the skills you needed to support a family—something women did not do, despite the fact that my grandmother, and later my mother, wound up doing precisely this. My mother was smart. She liked school. But school was ending. She took a job as secretary to a salesman in a firm that manufactured machinery to seal tin cans. That salesman, Geza Horvath, had a son. My mother met him at a Christmas party and within six months they were engaged. She was eighteen, he twenty-three.
Eventually she would wind up back there, the home she left for one of her own. She would take another secretarial job. Support from my father would be promised—later mandated—but it never quite managed to arrive. Doctors’ bills went unpaid, rent was late, groceries were a juggling act of sales and coupons and supermarket fliers. Somehow I knew this, information being one of the dubious advantages that accrue to the inconspicuous child. But there were also clues. It might have been the homemade clothes, or the way certain words—“restaurant,” say, or “vacation”—took on a reverential tone. The way we were told No, I’m sorry, you can’t see your father until . . . Or, You’re not sick enough to stay home, do you think I can miss another day?
Once in a while she talked about moving. Only where would we go? I could almost feel her thinking . . . What next?
Money was a problem and then abruptly, with my mother’s remarriage, it was not. No, that’s not quite right. Money was a problem, but in a different way. Only one person in our new makeshift family of four had money. Three did not. And that one never let the other three forget.
All the Difference Page 4
