Autobiography of a Face Read online

  Table of Contents

  Title Page

  Table of Contents

  Copyright

  Dedication

  Prologue

  ONE

  TWO

  THREE

  FOUR

  FIVE

  SIX

  SEVEN

  EIGHT

  NINE

  TEN

  ELEVEN

  TWELVE

  Acknowledgments

  Copyright © 1994 by Lucy Grealy

  All rights reserved

  For information about permission to reproduce selections from this book, write to Permissions, Houghton Mifflin Company, 215 Park Avenue South, New York, New York 10003.

  Library of Congress Cataloging-in-Publication Data

  Grealy, Lucy.

  Autobiography of a face / Lucy Grealy.

  p. cm.

  ISBN 0-395-65780-6

  1. Grealy, Lucy. 2. Ewing's sarcoma—Patients—United States—Biography. 3. Disfigured persons—United States—Biography. I. Title

  RD661.G74A3 1994

  362.1'96994716'0092—dc20 94-15222

  [B] CIP

  Printed in the United States of America

  BP 10 9 8 7 6 5 4 3

  Printed on recycled paper

  Book design by Melodie Wertelet

  For my friends,

  whom I love

  Prologue

  Pony Party

  MY FRIEND STEPHEN AND I USED TO DO PONY parties together. The festivities took place on the well-tended lawns of the vast suburban communities that had sprung up around Diamond D Stables in the rural acres of Rockland County. Mrs. Daniels, the owner of Diamond D, took advantage of the opportunity and readily dispatched a couple of ponies for birthday parties. In the early years Mrs. Daniels used to attend the parties with us, something Stephen and I dreaded. She fancied herself a sort of Mrs. Roy Rogers and dressed in embarrassing accordance: fringed shirts, oversized belt buckles, ramshackle hats. I'd stand there holding a pony, cringing inwardly with mortification as if she were my own mother. But as we got older and Stephen got his driver's license, and as Diamond D itself slowly sank into a somewhat surreal, muddy, and orphaned state of anarchy, we worked the parties by ourselves, which I relished.

  We were invariably late for the birthday party, a result of loading the ponies at the last minute, combined with out truly remarkable propensity for getting lost. I never really minded, though. I enjoyed the drive through those precisely planned streets as the summer air swirled through the cab of the pickup, rustling the crepe-paper ribbons temporarily draped over the rear-view mirror. When we finally found our destination, we'd clip the ribbons into the ponies' manes and tails in a rather sad attempt to imbue a festive air. The neighborhoods were varied, from close, tree-laden streets crammed with ranch-style houses to more spacious boulevards dotted with outsized Tudors. Still, all the communities seemed to share a certain carbon-copy quality: house after house looked exactly like the one next to it, save for the occasional cement deer or sculpted shrub. A dog would always appear and chase the trailer for a set number of lawns—some mysterious canine demarcation of territory—before suddenly dropping away, to be replaced by another dog running and barking behind us a few lawns later.

  I liked those dogs, liked their sense of purpose and enjoyment and responsibility. I especially liked being lost, tooling through strange neighborhoods with Stephen. As we drove by the houses, I gazed into the windows, imagining what the families inside were like. My ideas were loosely based on what I had learned from TV and films. I pictured a father in a reclining chair next to a lamp, its shade trimmed with small white tassels. Somewhere nearby a wife in a coordinated outfit chatted on the phone with friends while their children set the dinner table. As they ate their home-cooked food, passing assorted white serving dishes, they'd casually ask each other about the day. Perhaps someone would mention the unusual sight of a horse trailer going past the house that day. Certain that these families were nothing like my own, a certainty wrought with a sense of vague superiority and even vaguer longing, I took pride and pleasure in knowing that I was the person in that strangely surreal trailer with the kicking ponies and angry muffler, that I had driven by their house that day, that I had brushed against their lives, and past them, like that.

  Once we reached the party, there was a great rush of excitement. The children, realizing that the ponies had arrived, would come running from the back yard in their silly hats; their now forgotten balloons, bobbing colorfully behind them, would fly off in search of some tree or telephone wire. The ponies, reacting to the excitement of new sounds and smells, would promptly take a crap in the driveway, to a chorus of disgusted groans.

  My pleasure at the sight of the children didn't last long, however. I knew what was coming. As soon as they got over the thrill of being near the ponies, they'd notice me. Half my jaw was missing, which gave my face a strange triangular shape, accentuated by the fact that I was unable to keep my mouth completely closed. When I first started doing pony parties, my hair was still short and wispy, still growing in from the chemo. But as it grew I made things worse by continuously bowing my head and hiding behind the curtain of hair, furtively peering out at the world like some nervous actor. Unlike the actor, though, I didn't secretly relish my audience, and if it were possible I would have stood behind that curtain forever, my head bent in an eternal act of deference. I was, however, dependent upon my audience. Their approval or disapproval defined everything for me, and I believed with every cell in my body that approval wasn't written into my particular script. I was fourteen years old.

  "I hate this, why am I doing this?" I'd ask myself each time, but I had no choice if I wanted to keep my job at the stable. Everyone who worked at Diamond D had to do pony parties—no exceptions. Years later a friend remarked how odd it was that an adult would even think to send a disfigured child to work at a kid's party, but at the time it was never an issue. If my presence in these back yards was something of an anomaly, it wasn't just because of my face. In fact, my physical oddness seemed somehow to fit in with the general oddness and failings of Diamond D.

  The stable was a small place near the bottom of a gently sloping hill. Each spring the melting snow left behind ankle-deep mud that wouldn't dry up completely until midsummer. Mrs. Daniels possessed a number of peculiar traits that made life at Diamond D unpredictable. When she wasn't trying to save our souls, or treating Stephen's rumored homosexuality by unexpectedly exposing her breasts to him, she was taking us on shoplifting sprees, dropping criminal hints like some Artful Dodger.

  No one at Diamond D knew how to properly care for horses. Most of the animals were kept outside in three small, grassless corrals. The barn was on the verge of collapse; our every entry was accompanied by the fluttering sounds of startled tats. The "staff" consisted of a bunch of junior high and high school kids willing to work in exchange for riding privileges. And the main source of income, apart from pony parties, was hacking—renting out the horses for ten dollars an hour to anyone willing to pay. Mrs. Daniels bought the horses at an auction whose main customer was the meat dealer for a dog-food company; Diamond D, more often than not, was merely a way station. The general air of neglect surrounding the stable was the result more of ignorance than of apathy. It's not as if we didn't care about the horses—we simply didn't know any better. And for most of us, especially me, Diamond D was a haven. Though I had to suffer through the pony parties, I was more willing to do so to spend time alone with the horses. I considered animals bearers of higher truth, and I wanted to align myself with their knowledge. I thought animals were the only beings capable of understanding me.

  I had finished chemotherapy only a few months before I s
tarted looking in the Yellow Pages for stables where I might work. Just fourteen and still unclear about the exact details of my surgery, I made my way down the listings. It was the July Fourth weekend, and Mrs. Daniels, typically overbooked, said I had called at exactly the right moment. Overjoyed, I went into the kitchen to tell my mother I had a job at a stable. She looked at me dubiously.

  "Did you tell them about yourself?"

  I hesitated, and lied. "Yes, of course I did."

  "Are you sure they know you were sick? Will you be up for this?"

  "Of course I am," I replied in my most petulant adolescent tone.

  In actuality it hadn't even occurred to me to mention cancer, or my face, to Mrs. Daniels. I was still blissfully unaware, somehow believing that the only reason people stared at me was because my hair was still growing in. So my mother obligingly drove all sixty-odd pounds of me down to Diamond D, where my pale and misshapen face seemed to surprise all of us. They let me water a few horses, imagining I wouldn't last more than a day. I stayed for four years.

  That first day I walked a small pinto in circle after circle, practically drunk with the aroma of the horses. But with each circle, each new child lifted into the tiny saddle, I became more and more uncomfortable, and with each circuit my head dropped just a little bit further in shame. With time I became adept at handling the horses, and even more adept at avoiding the direct stares of the children.

  When our trailer pulled into the driveway for a pony party, I would briefly remember my own excitement at being around ponies for the first time. But I also knew that these children lived apart from me. Through them I learned the language of paranoia: every whisper I heard was a comment about the way I looked, every laugh a joke at my expense.

  Partly I was honing my self-consciousness into a torture device, sharp and efficient enough to last me the rest of my life. Partly I was right: they were? staring at me, laughing at me. The cruelty of children is immense, almost startling in its precision. The kids at the parties were fairly young and, surrounded by adults, they rarely made cruel remarks outright. But their open, uncensored stares were more painful than the deliberate taunts of my peers at school, where insecurities drove everything and everyone like some looming, evil presence in a haunted machine. But in those back yards, where the grass was mown so short and sharp it would have hurt to walk on it, there was only the fact of me, my face, my ugliness.

  This singularity of meaning—I was my face, I was ugliness—though sometimes unbearable, also offered a possible point of escape. It became the launching pad from which to lift off, the one immediately recognizable place to point to when asked what was wrong with my life. Everything led to it, everything receded from it—my face as personal vanishing point. The pain these children brought with their stares engulfed every other pain in my life. Yet occasionally, just as that vast ocean threatened to swallow me whole, some greater force would lift me out and enable me to walk among them easily and carelessly, as alien as the pony that trotted beside me, his tail held high in excitement, his nostrils wide in anticipation of a brief encounter with a world beyond his comprehension.

  The parents would trail behind the kids, iced drinks clinking, making their own, more practical comments about the fresh horse manure in their driveway. If Stephen and I liked their looks (all our judgments were instantaneous), we'd shovel it up; if not, we'd tell them cleanup wasn't included in the fee. Stephen came from a large, all-American family, but for me these grownups provided a secret fascination. The mothers had frosted lipstick and long bright fingernails; the fathers sported gold watches and smelled of too much aftershave.

  This was the late seventies, and a number of corporate headquarters had sprung up across the border in New Jersey. Complete with duck ponds and fountains, these "industrial parks" looked more like fancy hotels than office buildings. The newly planted suburban lawns I found myself parading ponies on were a direct result of their proliferation.

  My feelings of being an outsider were strengthened by the reminder of what my own family didn't have: money. We should have had money: this was true in practical terms, for my father was a successful journalist, and it was also true within my family mythology, which conjured up images of Fallen Aristocracy. We were displaced foreigners, Europeans newly arrived in an alien landscape. If we had had the money we felt entitled to, we would never have spent it on anything as mundane as a house in Spring Valley or as silly and trivial as a pony party.

  Unfortunately, the mythologically endowed money didn't materialize. Despite my father's good job with a major television network, we were barraged by collection agencies, and our house was falling apart around us. Either unwilling or unable, I'm not sure which, to spend money on plumbers and electricians and general handymen, my father kept our house barely together by a complex system of odd bits of wire, duct tape, and putty, which he applied rather haphazardly and good-naturedly on weekend afternoons. He sang when he worked. Bits of opera, slapped together jauntily with the current top forty and ancient ditties from his childhood, were periodically interrupted as he patiently explained his work to the dog, who always listened attentively.

  Anything my father fixed usually did not stay fixed for more than a few months. Flushing our toilets when it rained required coaxing with a Zenlike ritual of jiggles to avoid spilling the entire contents of the septic tank onto the basement floor. One walked by the oven door with a sense of near reverence, lest it fall open with an operatic crash. Pantheism ruled.

  Similarly, when dealing with my mother, one always had to act in a delicate and prescribed way, though the exact rules of protocol seemed to shift frequently and without advance notice. One day, running out of milk was a problem easily dealt with, but on the next it was a symbol of her children's selfishness, our father's failure, and her tragic, wasted life. Lack of money, it was driven into us, was the root of all our unhappiness. So as Stephen and I drove through those "bourgeois" suburbs (my radical older brothers had taught me to identify them as such), I genuinely believed that if our family were as well-off as those families, the extra carton of milk would not have been an issue, and my mother would have been more than delighted to buy gallon after gallon until the house fairly spilled over with fresh milk.

  Though our whole family shared the burden of my mother's anger, in my heart I suspected that part of it was my fault and my fault alone. Cancer is an obscenely expensive illness; I saw the bills, I heard their fights. There was no doubt that I was personally responsible for a great deal of my family's money problems: ergo, I was responsible for my mother's unhappy life. During my parents' many fights over money, I would sit in the kitchen in silence, unable to move even after my brothers and sisters had fled to their bedrooms. I sat listening as some kind of penance.

  The parents who presided over the pony parties never fought, or at least not about anything significant, of this I felt sure. Resentment made me scorn them, their gauche houses, their spoiled children. These feelings might have been purely political, like those of my left-wing brothers (whose philosophies I understood very little of), if it weren't for the painfully personal detail of my face.

  "What's wrong with her face?"

  The mothers bent down to hear this question and, still bent over, they'd look over at me, their glances refracting away as quickly and predictably as light through a prism. I couldn't always hear their response, but I knew from experience that vague pleas for politeness would hardly satisfy a child's curiosity.

  While the eyes of these perfectly formed children swiftly and deftly bored into the deepest part of me, the glances from their parents provided me with an exotic sense of power as I watched them inexpertly pretend not to notice me. After I passed the swing sets and looped around to pick up the next child waiting near the picnic table littered with cake plates, juice bottles, and party favors, I'd pause confrontationally, like some Dickensian ghost, imagining that my presence served as an uneasy reminder of what might be. What had happened to me was any parent's nightmare, a
nd I allowed myself to believe that I was dangerous to them. The parents obliged me in this: they brushed past me, around me, sometimes even smiled at me. But not once in the three or so years that I worked pony parties did anyone ask me directly what had happened.

  They were uncomfortable because of my face. I ignored the deep hurt by allowing the side of me that was desperate for any kind of definition to staunchly act out, if not exactly relish, this macabre status.

  Zoom lenses, fancy flash systems, perfect focus—these cameras probably were worth more than the ponies instigating the pictures. A physical sense of dread came over me as soon as I spotted the thickly padded case, heard the sound of the zipper, noted the ridiculous, almost surgical protection provided by the fitted foam compartment. I'd automatically hold the pony's halter, careful to keep his head tight and high in case he suddenly decided to pull down for a bite of lawn. I'd expertly turn my own head away, pretending I was only just then aware of something more important off to the side. I'd tilt away at exactly the same angle each time, my hair falling in a perfect sheet of camouflage between me and the camera.

  I stood there perfectly still, just as I had sat for countless medical photographs: full face, turn to the left, the right, now a three-quarter shot to the left. I took a certain pride in knowing the routine so well. I've even seen some of these medical photographs in publications. Curiously, those sterile, bright photos are easy for me to look at. For one thing, I know that only doctors look at them, and perhaps I'm even slightly proud that I'm such an interesting case, worthy of documentation. Or maybe I do not really think it is me sitting there, Case3, figure 6-A.

  Once, when my doctor left me waiting too long in his examining room, I leafed through my file, which I knew was strictly off-limits. I was thrilled to find a whole section of slides housed in a clear plastic folder. Removing one, I lifted it up to the fluorescent light, stared for a moment, then carefully, calmly replaced it. It was a photograph taken of me on the operating table. Most of the skin of the right side of my face had been pulled over and back, exposing something with the general shape of a face and neck but with the color and consistency of raw steak. A clamp gleamed off to the side, holding something unidentifiable in place. I wasn't particularly bothered; I've always had a fascination with gore, and had it been someone else I'd have stared endlessly. But I simply put the slide in its slot and made a mental note not to look at slides from my file again, ever.