Authors: Emily Rapp
Poster Child
Praise for
Poster Child
"Rapp's precise and forthright descriptions of her exhausting physical ordeals and complex psychic wounds are simultaneously harrowing and fascinating . . . She offers a fresh perspective on our obsession with physical perfection, especially the crushing expectations for women, and she writes delicately about the fears that disability engenders regarding intimacy and sex. Rapp's insider's view of the history of prostheses deepens our empathy and admiration for those who depend on artificial limbs, a growing population, once again, in yet another time of war and horrific injuries. Memoir, the conduit from the personal to the universal, is the surest way into the kind of significant psychological, sociological and spiritual truth Rapp is engaged in articulating. And there isn't one false note here. Not one inauthentic moment. No cheap manipulation. No self-importance . . . Her cauterizing specificity is compelling, her candor incandescent and her intelligence, courage and spiritual diligence stupendous."
—
Donna Seaman,
Los Angeles Times
"You can't put down this excellent memoir . . .
Poster Child
beautifully illustrates every human being's sometimes overt, sometimes covert struggle against the intractability of our own physical condition."
—
Carolyn See,
Washington Post
"Mature and graceful debut memoir about a childhood struggle to be perfect. . . This should not be viewed only as a disability memoir. It is also a story of the 1970s and '80s . . . a spiritual memoir of the movement from childhood pieties to adult faith and a confession that will resonate with anyone who spent their youth overcompensating, for whatever reason. Rapp has excelled again: This book is a blessing."
—
Kirkus Reviews
(starred review)
"Revelatory and emotional, truthful and empathetic . . . Honest and perceptive."
—
Christina Eng,
San Francisco Chronicle
"Emily Rapp brilliantly succeeds at communicating the pain, shame and profound strangeness she experienced as a young amputee. [She] writes breathtakingly, almost magically, of the world of wooden legs, silicone feet and metal knee hinges that are made in a filthy workshop by a man who has no soap in his bathroom and dying plants in his waiting room."
—
Donna Minkowitz,
Newsday
"The best memoirs tell great stories uncovering the nuances of a life and the sometimes extraordinary situations that make it unique. They delve deep into the author's psyche sharing life's unpredictable, painful, and sometimes joyful, moments. Emily Rapp's riveting
Poster Child
is one such book . . . Thanks to Rapp's honest, straightforward confessions, we come a little closer to walking in her shoes."
—
Mary Houlihan,
Chicago Sun-Times
"Everything about Emily is uniquely wonderful; her memory; her story; her voice; her human insights; her endless strength, honesty, and grace; her pitch-perfect prose. My only criticism with this book is that it ended."
—
Amy Krouse Rosenthal, author of
Encyclopedia of an Ordinary Life
"With a voice as refreshing as spiked lemon ice, authentic, feisty, and tender,
Poster Child
connects us to an unflinching American family and to a guileless young woman who tells her emerging story with luminous self-command. At every quarter turn we follow the narrator's transformations from her first tentative steps and into glittering prisms of personal challenge and explosive discovery. A triumph of warmth, wit, and a fiercely lyric psyche."
—
Maria Flook, author of
Invisible Eden
and
My Sister Life
"Emily Rapp tells a revealing and believable story of physical endurance, a fierce will, and the devotion of a remarkable family. Some difficult things in life can never be solved however hard we try, and Emily Rapp's memoir details her congenital defect and the ensuing medical ordeals. Graced with many gifts—intelligence, beauty, and spirit—Emily Rapp's greatest achievement is to help us understand what it really means to be a whole person."
—
Laura Furman, author of
Drinking with the Cook
and series editor of
The
O.
Henry Prize Stories
"The pain of endless surgeries, the fear of never being loved, the longing to be whole in a culture ruled by a heartless obsession with physical perfection. These emotions underlie Emily Rapp's wonderful book, but they don't define it.
Poster Child
is too much fun to read, too rich with hardheaded detail about everything from the terrors of miniskirts to the mechanics of artificial limbs, to be mistaken for a woeful tale of disability. Here is what it is like to have a daring mind, a full heart—and one leg."
—
Stephen Harrigan, author of
Challenger Park
POSTER CHILD
A Memoir
Emily Rapp
BLOOMSBURY
Some of the names, locations, and details of events in this book have been changed to protect the privacy of persons involved.
Copyright © 2007 by Emily Rapp
All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission from the publisher except in the case of brief quotations embodied in critical articles or reviews. For information address Bloomsbury USA, 175 Fifth Avenue, New York, NY 10010.
Six lines, used as epigraph, from "The Applicant" from
Ariel
by Sylvia Plath copyright © 1963 by Ted Hughes. Reprinted by permission of HarperCollins Publishers.
Published by Bloomsbury USA, New York
Distributed to the trade by Macmillan
All papers used by Bloomsbury USA are natural, recyclable products made from wood grown in well-managed forests. The manufacturing processes conform to the environmental regulations of the country of origin.
THE LIBRARY OF CONGRESS HAS CATALOGED THE HARDCOVER EDITION AS FOLLOWS:
Rapp, Emily.
Poster child : a memoir / Emily Rapp.
p. cm.
1. Rapp, Emily. 2. Femur—Abnormalities—Patients—Biography. I. Title.
QM117.R37 2007
362.197'580092—dc22
[B]
2006012555
First published by Bloomsbury USA in 2007
This paperback edition published in 2008
eISBN: 978-1-59691-505-3
1 3 5 7 9 10 8 6 4 2
Typeset by Westchester Book Group
Printed in the United States of America by Quebecor World Fairfield
For my parents, Mary and Roger Rapp
and for Glen and Ann Rebka
First, are you our sort of person?
Do you wear
A glass eye, false teeth or a crutch,
A brace or a hook,
Rubber breasts or a rubber crotch,
Stitches to show something's missing?
. . .
—Sylvia Plath, "The Applicant"
Contents
HIDDEN TRUTHS
After the van dropped me off in the middle of ChunCheon, I turned the map around in my sweating hands, trying to figure out where I was in relation to where I needed to be. The map was written in Korean, and my limited knowledge of the language meant I could decipher only a few letters and words. To my left, pedestrians and bicyclists were vying for space on a street lined with noodle huts. Walking in the direction of people and activity seemed a better plan than standing on a street corner fumbling with an incomprehensible map.
Traffic was bumper-to-bumper. Cranes swung in the air over buildings-in-progress. Digital billboards advertised cars, bourbon, cigarettes, and cruise holidays. A Chinese opera blared out of a record store. A chaos of smells—car exhaust, rotting vegetables, melting tar, and frying garlic—moved through the sweltering mid-afternoon air. I turned off the main road onto a smaller street when my left leg buckled beneath me; I fell backward into a puddle of motor oil in front of a small roadside stand.
Sitting in the hot street, I tried to inspect the damage: Had my prosthesis lost a screw or some other part that had caused it to malfunction? Perhaps I had simply lost my balance and fallen, as I often had as a child. Using my fingertips to grope through the cosmetic socks that covered the leg, I found the hydraulic system at the back of my knee, searching for loose parts, searching for the source of the trouble. The knee was hot to the touch from the friction of walking and the heat of the city. My prosthetist had warned me that it was possible for the seals and fluid in the hydraulic unit to fail under such conditions. I knew from many prosthetic fittings that an artificial leg without a single part was like a car with a flat tire. The whole machine was useless.
I was afraid to stand up and walk for fear that the leg would fall completely apart and all the technology, all the tiny, carefully aligned parts that held me together, would be ruined or lost on a strange street with a name I couldn't pronounce. Two schoolgirls, arm in arm, stopped a few feet from where I had fallen and stared down at me, whispering to each other behind their hands. A bicyclist swerved around me just in time, yelling at me as he sped away.
I was failing my first survival test as a Fulbright scholar. Although I had been out in the city numerous times, I had a terrible sense of direction, and I had been dreading this activity for days. After all twenty of us had piled into the van, Mr. Adams, the program administrator and the man in charge, had dropped us off one by one, instructing us to find our way back from our individual "drop points" (as he called them) to the dormitory at the university, where we were receiving a six-week crash course in Korean and conversational English lesson planning. "Use your Korean if you get lost!" Mr. Adams encouraged. In another three weeks, each of us would be teaching in public schools throughout South Korea.
I had come to Korea for several reasons. During my junior year abroad in Ireland, I had enjoyed the challenge of living in a new place and making a life for myself in a country where so much was exciting and different: food, holidays, songs, electrical outlets, habits, fashion, and expressions. The Fulbright scholarship appealed to me because it offered another chance for me to reinvent myself and seek adventure. It was also prestigious; this was of absolute importance to me, because I was constantly seeking proof that I should believe in myself I was affirmed when, through my achievements, I received attention for being smart and fearless.
With all those issues in play, I had given scarcely any thought to the country in which I would live and work. Foolishly, I thought place was of little consequence, as long as it was new, different, and far from home. I chose Asia because I'd never been there; I chose Korea because it was described, in some of the materials I happened to read, as "the Ireland of Southeast Asia." I investigated the country and my responsibilities as a Fulbright English teacher no further than that. I applied and got the scholarship. Six months later, I was on a plane bound for Seoul.
I thought of the other scholars, and a fear that I might finish last finally motivated me to move. I told myself that I could not fail: I would survive the survival test! I pushed myself into an upright position.
After I slowly stood up, I found myself face-to-face with the vendor of the stand where I'd fallen. Rivers of wrinkles ran from the man's forehead all the way down his neck and arms. He wore a loose blue shirt and a green plastic visor that read, "Get It On!" Behind him were his goods piled up for sale.
Although I clearly needed help, I was nervous about asking for it. Mr. Adams had told me when I arrived in the country three weeks ago that people with disabilities were often institutionalized in Korea. "I've never seen one in public," he'd said at our first group meal. "It might be difficult to find a host family that will accept you." If people with disabilities were so disliked and mistreated, this man might refuse to help me. What would I do then?
I felt ridiculous and desperate. My hands and my backside were covered in oil, my body was covered in sweat, and I kept bending down to feel the four-bar hydraulic knee. I tried to remember the way my prosthetist looked at the leg when I visited his office for regular tune-ups; I tried to recall where all the different parts belonged. The truth was, I knew little about the leg's mechanics. I simply handed it over and waited for it to be fixed. I didn't want to be bothered with the way it was constructed or how it worked. The only thing I knew how to do was tighten the hydraulics with a small wrench in order to change the speed at which my leg swung through as I walked. Why hadn't I paid more attention to what my prosthetist did? Was it a screw, the foot, the fit, the socket, the weather?
People were watching, staring. I tried to pretend that their looks were rolling off me like water—a little visualization I used to withstand people's stares when I wore shorts or short skirts during the summer. In Korea, I wore long dresses or loose pants. Except for the artificial foot, which was covered in two layers of thick orthotic support hose two shades darker than my pale skin, and a slight limp, the most obvious physical sign of my disability—the artificial leg itself—was always hidden beneath my clothes.
I hobbled over to the stand, slowly dragging my left leg behind me. The prosthesis had been in a state of disarray for weeks. During the day, I could practically smell the latex spray that covered the leg burning off. The heel of my Flex-Foot, an expensive foot made of carbon fiber, was poking out slightly through the back of the cosmetic shell like a bone jutting out of my heel. I felt ratty and badly put together.
My heart was beating at an alarming speed. The vendor fanned his face and blew smoke into mine. I offered a smile. I did not know the Korean word for "Allen wrench": the ideal tool to fix the problem, if the hydraulics were, in fact, the problem. "Uh, screwy thing?" I said, pointing at the back of my leg and twisting my finger. I felt helplessly idiotic and as if I might laugh or cry at any moment.
This state-of-the-art leg had always been absolutely reliable; the fall was an unfortunate accident. Being in a country I knew so little about quickly created worst-case scenarios in my mind. What if I couldn't make myself understood or the leg couldn't be fixed?
Would I have to
hop
somewhere for help? And where would that be? Although, as promised, we had not been driven that far from the dormitory, without the use of the leg, even several blocks would seem like a mile. I was starting to make myself sick with worry, but I tried to look exceptionally friendly. "Help?" I asked, beaming.
The man responded with a deep, textured, smoker's laugh. I understood then, without words, that he was laughing less at me than at my situation. He motioned for me to follow him, and he led me to a stool behind his stand. There was an impressive collection of items for sale: lacy pink bras, cans of beans, Hershey bars, Manwich, outdated
Playboy
magazines, Obsession cologne, dusty jars of Skippy peanut butter, Buddha statues, and tape recorders. Hanging from hooks on the walls were colorful
imikabang,
or "immigration bags," which could expand or contract.
He returned with a tiny screwdriver held aloft in one hand. Perfect. I rolled down the cosmetic sock, and using the screwdriver and my fingers, I tightened the hydraulics enough, I thought, to hold the leg together. The vendor watched me as I worked underneath the cover of my long skirt. I returned the tool and rolled up the sock. When I stood up to take a tentative step, his hands hovered just beside my shoulders as if he would catch me if I fell. The leg felt steady, at least for now. Disaster had been averted.
We bowed to each other—
Kahmsamnida Anhyonghi kyeseo,
Thank you and good-bye, I fumbled in Korean, hoping I'd chosen the appropriate farewell. I walked out under the deep pink sky and jungle of neon.
Eventually I made it back to the dorm. I walked until I found a main road, and then, using landmarks I remembered from previous nights out in the city with the other scholars, I found my way. Moving as quickly as I could, I panicked the whole time, afraid that I would finish last. I was afraid to look weak, the way I had been revealed and made vulnerable in the street. I was afraid that if I arrived at the dorm last, people would think it was because of my disability, and they would either pity me or look down on me. Both thoughts were equally intolerable and made me almost physically ill. I was afraid to put my full weight on the leg; this created an uneven gait and made the lip of the socket dig painfully into my left hip. I tolerated this pain, because it was normal and expected: part of living with a prosthesis. I had grown up wearing a progression of wooden legs that grew taller as I did, until in college I was fitted with a state-of-the-art prosthesis that was the model I will wear, with various modifications, for the rest of my life.
I felt sweat pooling at the bottom of the silicone socket, making it slip and chafe against the small ankle bone on my stump (the residual limb), creating sores that would later itch and bleed. Still I walked on. I knew the torn skin would heal after a few days, and I could not lose. If I arrived last, I thought, I would be nothing but a cripple.
By the time I reached the dorm, I was hobbling and in a great deal of pain, but making it back was the only thing that mattered to me. I was thrilled to be one of the first to arrive at the meeting point. I felt a rush of relief mixed with a kind of intoxicating pride.
I went upstairs and scrubbed my hands clean in the sink at the end of the hall. I walked to my room, put my ruined clothes in a plastic bag, and removed my leg. It was hot and stinking between my hands as I held it upside down and peered into the hydraulic unit. With the Allen wrench I had thrown into my suitcase at the last minute, I tightened the hydraulics, bending the leg back and forth until the knee moved as stiffly as possible; now I would be able to tell when and if it loosened. I also cleaned out sand, dirt, oil, and dust that had collected behind the knee joint. Finally, worried that the leg smelled badly, I gave it a light mist with my favorite French perfume.
I had been unaware of what was going on with the leg. Because South Korea had been such an adjustment in so many other ways, I had neglected my prosthesis. Adapting to a new language, weather, and all the other aspects of a different culture was important, but now I realized I needed to keep an eye on the leg, too. I scolded myself for not thinking of this earlier. Angrily, I thought,
Why should I
have to deal with this shit?
The rest of the Fulbrighters seemed magnificently composed and carefree; for me, wearing shorts in public was a big deal, and I did it very rarely. I took a deep breath. In my head, I listed all my accomplishments—this made me feel better. Bitterness and anger would never help. I had learned to manage my disability by putting on a determined smile and believing that with the right adaptive strategies—the right clothes, the right attitude, and a sense of humor—I could adjust to any situation. I revisited those coping mechanisms and told myself that everything was fine: I was here, wasn't I? For now, that would need to be amazing enough.
After I applied antibiotic ointment to the wounds I had acquired while walking home, and had cleaned out the sweaty silicone socket with a towel, I reassembled myself. With years of practice, I reattached the leg in less than a minute. I rolled the silicone back over the stump, put on the polyester-and-spandex Soft Sock, slipped the stump into the leg, tucked the socket's string through the hole on the side of the leg near my right inner thigh, pulled it tight, fastened the Velcro side of the string to the corresponding strip on the artificial thigh, and then twisted my stump inside the leg a bit to be sure everything was secure. I folded the sock over the leg's edge and pulled up the flesh-colored hose; they gripped the top of my artificial leg like the thigh-high stockings sold in lingerie stores. I carefully smoothed out the fabric near the ankle so it wouldn't bunch up and look like loose, flabby skin. I grabbed a long cotton dress from the closet and pulled it over my head. I put my sandals back on. Fully reassembled, I left the room and joined the others who were headed down the stairs to dinner. I strolled away into the world of my evening, laughing.
