Poster Child (9 page)

"What's the matter with that guy? What'd he do?" I asked. The people Mom and Dad helped looked unlucky; they seemed to define this word. I was confused by the space that money had crossed, from my mother's hand to another's. It was such a short distance, yet both people seemed to be reaching out, or was it away? The transients disrupted my safe space with an air of desperation and resignation that I found almost toxic. I wanted to clear the air.

"Why are they so poor, those people?" I asked. "What's the matter with them?"

"They just are," Andy said. "It's not their fault." He looked at Mom for confirmation, and she nodded as she came up the stairs. I didn't buy it.

"It's just what happens," she said. "They didn't do anything wrong. They just need a little extra help."

"People need help sometimes," Andy offered. "They're poor, Emily."

"That's right," Mom said, looking at me. "Listen to your brother."

When I asked Dad about our visitors, he said, "Oh, they're not so poor. They're doing all right. Something good is bound to happen to them at some point." This boundless, unfounded optimism seemed like an even more ridiculous answer in my mind, as much as I wanted to believe it.

I did not feel benevolence toward the people who came to our door asking for help. There was a song I had learned at Sunday school—"And they'll know we are Christians by our love, by our love"—but I did not feel loving toward those who were needy. Unlike the rest of my family, I did not feel kind or obligated to offer any assistance. What I knew about the body was that it could be harmed, wounded, and dismantled. I had been told that my disability was the result of an accident that had "just happened" long before my birth, the effect of which—the shorter leg—was discovered only when I was born. This always confused me: When exactly had the accident happened? During the first week of life inside my mother? The first month, the third? Hours before I came into the world? Minutes after? Was I floating around in the womb and then suddenly the leg was twisted, made deficient, just like that? What was the cause that had produced this undesirable effect? Who did it? Was it God, whom I thanked in Sunday school songs for "making me me"? Was it Mom's fault? Mine? Nobody had answers to these questions, and I grew tired of asking them and thinking about them. When, why, how? Nobody knew. I would have to be content with this: A mysterious, random accident had created the body I now inhabited.

Unhappy with this paltry explanation, I had decided that my days of accidents were over; I simply would not be having any more. The sight of those needy families and individuals made me uncomfortable because they held out the very real possibility that my life might carry with it a string of unforeseen and undesirable events. How many was one person allotted by God or who or whatever decided? I convinced myself that the people my family helped because it was "the Christian thing to do" had done some grievous wrong to end up as they did. They must have some bad habit or personal flaw that landed them, desperate, at somebody's door. That, I assured myself, would certainly never happen to me. I was the poster child, destined for much better things. But lurking behind this confidence was fear, however fleeting: I would not be the poster child forever; I would not be a
child
forever. After my term ended and another little girl or boy appeared in the papers and on the posters, then who would I be? What would happen when I grew up, became a woman, became a mother? At the age of six, I did not engage these questions deeply; it would be years before I engaged them at all.

Being the poster child certainly did not exempt me from more operations. Two years later, during Christmas break in the third grade, I had a repeat epiphysiodesis. My femur was still growing; Dr. Elliot was concerned that if it grew any longer, I would have difficulty walking well in a prosthesis. After the surgery, I was not in a body cast but was instead given a leg cast and crutches.

The day before the operation, I was walking back from lunch with some friends. Wearing our moon boots, we had to be careful not to slip and fall on the pools of melted snow in the hallways.

"Aren't you scared?" one girl asked.

"No," I said. They looked at me with slightly stricken, amazed faces, as if they were gazing at a religious shrine in which I was the main attraction. I straightened with pride; I could see they were in awe. "It's just the hospital. What's there to be afraid of?" I said, as if I were explaining why it was silly to be afraid of an innocuous animal at the zoo.

I wasn't afraid. Although I remember pain from my surgeries, the thing I remember most is attention: undivided, concerned, and concentrated. It was a vain little girl's dream. Because I felt so pampered and attended to, I rarely felt implicated in the danger of the procedures.

"You'll be just fine," Mom always told me before operations. "These doctors know what they're doing." How did I know she lay awake, sleepless, nearly every night for a week before the surgery? I didn't notice the bags underneath her eyes. What I noticed was her presence and her reassurance, both of which I expected and demanded.

In the hospital, I ruled. Not only did my parents cater to my every need and desire, but visitors and friends came with gifts and good wishes. I held court from my post in the orthopedic ward. I reveled in the hospital's busy atmosphere, its citylike noises: the traffic of nurses through the hallways; the slide of metal rings over metal rods as room-dividing curtains were opened and closed; constant sports talk radio or easy listening tunes at the nurses' station; kids playing games in their rooms; the clip of a pair of dress shoes past my half-open door; a low and layered murmur of voices complicated by the occasional bright outburst of deep laughter or a wild and confused scream. Too young to fully understand the long-term effects these surgeries would have on my life and too accustomed to operations to be overly phased by them, I practically looked forward to stints in the hospital. Here I reigned, the redheaded queen: bubbly, happy, and brave. I felt at home in those rooms and corridors, as if this were my rightful home all along.

As a young adult, when I went to orthopedic appointments and sat in the waiting room by myself, I watched the mothers of Dr. Elliot's patients. They looked at me carefully. Perhaps they were wondering about their child's future: how she would walk, how she would move, how she would manage the everyday stresses and trials of the world. I felt so implicated in those mothers' pain, I wanted to weep. I kept my eyes focused on the wall, waiting for the receptionist to call me back to the exam room; I felt the stares of the women breaking me down. I felt them itching to ask me questions as their own misshapen children played on the floor with blocks and dolls. The mothers practically glittered with fear, with helplessness, with a defiant love that would never give in to shame, and with a fierce optimism that was practically a sound—Tike white noise—in the waiting room. I thought of my own mother. How little I had appreciated her, how alone she must have felt in her fear.

When I was more conscious of everything Mom had to deal with, I wondered if she resented having such a difficult girl for a daughter; I wondered if she'd wished for a different kind of life, a different kind of child. I knew that I wanted to have two children—both girls—and I had already selected their names and professions: Cassandra would become a ballerina, and Sonya would be an opera singer. I asked Mom what she'd wished for when she'd imagined her future family.

"Dad and I wished for kiddos just like you and Andy. A boy and a girl. We would sit on the roof of your grandma's house and look at the stars and think up names for you."

"What did you want to name me?"

"Heidi."

"Yuck," I said.

Heidi. I could just picture myself bearing that name with my wooden leg, thick glasses, and buckteeth. No thanks.

"When you were born, your dad thought you were more of an Emily. We were excited about you," she said, sensing, I think, what these questions were about. I didn't fully believe her.

We were damaged, I thought, Andy and I. And no matter how loved and cared for you are, when you are damaged you are alone in that experience; this must have been the most painful thought for my parents, for surely they knew this.

Later, I would know that Mom and Dad understood the sense of isolation that Andy and I often felt because of our physical issues, but for different reasons. Mom's father committed suicide in a hot barn long before she could form memories of him, and her mother, after years of sickness from a heart ailment due to scarlet fever as a child—sicknesses Mom nursed her through—died the year Mom was married; she died while Mom tried to revive her using CPR. Dad never knew his father; he grew up in a town where everyone knew his family history, a place where his mother—young and beautiful but unmarried at the time of his birth—would never be forgiven for her misdeeds. My parents knew that pain was the great solo experience of the human heart, that it was as alienating as any physical surgery, as any amputation.

They must have hoped, sitting on the roof of my grandmother's house on a warm summer night, looking out over the cemetery where in less than a year she would be buried, that their trials, at least the health-related ones, would not be so severe in this next chapter of their lives, which they had chosen to begin together. Didn't all couples about to be married hope for a fresh start, a new beginning? I pictured Mom and Dad staring up at the night sky, counting the stars, making silly, romantic wishes as they swatted mosquitoes and listened to the cicadas hum, already naming children they could not yet fully imagine. I was sure that no parents in their right minds would ever have wished for me.

The feeling that I was a very real burden who was never made to feel like one or treated as such did not make me a sweeter child; rather, it made me a quick-tempered terror. The more attention I received as the poster child, the more attention I expected and demanded from everyone else and, in particular, from my family. Mom and Dad were afraid to say no to me. I sensed this and pulled out all the stops. The older I got, the worse it became. I was an expert at the silent treatment game. Door slamming and screaming fits were simply commonplace. I was sweet in my appearance as the poster child, of course, and I learned to always be good and nice and accommodating in public, but my anger flared at the slightest provocation whenever I was with my family. Andy complained to Mom and Dad that I was out of control and they should do something about it. I stopped speaking to him for weeks at a time; I called him "fatso" and pushed him around. I claimed to hate everything and everybody, but more than anything else, I began to hate myself.

Chapter Five

HANGING A STAR

In the winter of 1981, Dr. Elliot showed me a twenty-minute video about amputee skiers called
Two . . . Three
. . .
Fasten Your Ski.
The one-legged skiers raced down the slopes past throngs of cheering people. "I want to do that," I said.

"Good girl," Dr. Elliot replied.

Mom wasn't convinced it was a good idea. "Skiing sounds dangerous," she said.

"She'll love it," Dad said. And he was right.

I enrolled in the Winter Park Handicapped Ski Program in Colorado, a place known for its professional and successful education of disabled skiers. By the time I was twelve, we were driving to Colorado every two weeks during the winter so I could continue training.

Amputees are "three-track skiers"; they use one ski and two outriggers instead of poles. The artificial leg is left back in the ski lodge, usually in the changing room. Outriggers are two short skis that are secured to the end of a modified Canadian crutch—the metal cuff hits just over the elbow and hugs the upper arm. The skis can be flipped up by pulling on an attached string and then used as crutches. When the small skis are let down again, they skim the surface in front of the skier, creating balance and three points of contact with the mountain. The back of each outrigger has a serrated edge that can be dragged in the snow as a brake. Outriggers help maintain an amputee's balance and allow the skier to shift his or her weight from side to side more easily, providing greater control of speed and movement. The tripod is a remarkably steady shape.

In skiing, I found the sport in which my wishes for speed, agility, and grace were fulfilled. I was taught a distinctive skiing style: The foot was "educated" to steer the ski in a specific way; I learned to anticipate each turn and adjust my body, skis, and outriggers accordingly, producing a fluid, graceful motion. "Their skiing is fundamentally strong, aggressive, and dynamic," wrote the director of the program in his training manual. "We are proud of our amputees. They are beautiful skiers."

The modifications I had to make for my individual body seemed relatively minor on the slopes. Three-track skiers wear mittens instead of gloves, because we put constant pressure on our hands, which easily become cold. To improve circulation and avoid frostbite, I learned to beat my stump against the seat of the chairlift as it went up the mountain. But it was gravity that made able-bodied and disabled skiers nearly equal. Anyone with two legs was just as likely to fall as I was, and once I learned the art of falling, I no longer feared it. A person could
learn
to fall; it did not have to be an embarrassing accident indicative of a prosthetic malfunction, as it was in everyday life. When I felt my balance falter and the ski slip out of its correct alignment, I loosened my body and leaned into gravity, flinging my outriggers up and over my head. I didn't rip my pants or tights; I didn't scrape my right knee or my hands as I did wearing my leg; instead I fell gracefully, letting go of my balance and my fear—letting go of everything.

We never had to rent or buy outriggers or skis, although later I would have my own. Instead, when an amputee grew out of her gear, she donated it to the back room. "The back"—as we called it—was a sea of single boots and mismatched skis. It was a physical manifestation of an alternative history, proof that the lives of others like me had not gone unnoticed and that the people I often imagined matched up with artificial limbs at Schmidt's office actually existed. They not only lived and breathed, they skied, and here was the physical proof. I had company in my unique body. I was not alone.

It was exhilarating to feel free and whole without the leg on. I felt beautiful and strong as I had as a swimmer, only on the slopes I went so fast that I rarely noticed people staring at me. At the end of the day, exhausted and elated, I unpinned the end of my waterproof bib overalls and unwrapped my cold stump from its layers: two Ace bandages topped with two of Dad's wool socks. I warmed up, wolfed down an irresponsible amount of chocolate, and fell into the sweet blackness of perfect, uninterrupted sleep long before we reached the hotel room.

I woke up the next morning ready to go. I could not get enough of the speed, the cold, the soreness in my muscles that made me feel invincible. I got better and better, and I loved a challenge: moguls, steep slopes, icy runs, narrow runs, and finally, the winter I turned thirteen, expert runs. At the end of the day, my body felt like one taut, able muscle. I was seriously pleased with myself.

It was through the Handicapped Ski Program that I first met people with different kinds of physical and mental disabilities. In the central room where skiers and instructors gathered at the base of the mountain, the atmosphere was lively and diverse, convivial and active—so unlike the hospital wards or waiting rooms where all of us had spent time.

I learned much from my fellow skiers about bodies and what they could do. The deaf skiers taught me how to sign a few words: "ski" and "run" and "fast," all the important words for what we were learning. Men and women who used wheelchairs in their daily lives used mono-skis or bi-skis on the mountain: special chairs mounted on one or two skis. The user leaned left and right, using short outriggers or poles that were held in his or her hands or mounted to the side of the chair. People with more limited motion used the sit-ski that looked like a sled. I liked the brightly colored ones in yellow, green, and blue. Blind people learned to ski with a buddy skiing behind them, calling out instructions for turns and movements—embodying the meaning of trust. People with cerebral palsy, spina bifida, and Down's syndrome learned how to ski; everyone could ski; each did it a little differently, adapting the sport to the unique shapes and abilities of his or her individual body.

I felt deep respect for the people I met and for myself as well: We had all adapted, we had all made do with what we were given. I was accepted by this group easily and immediately; I was part of them. The names of the runs—Enchanted Forest, Jabberwocky, Cheshire Cat, and March Hare—were not lost on me. It felt very much like Wonderland, although everyone was a differently embodied version of Alice.

The bathroom where amputees changed out of—and usually left—their limbs for the duration of their lessons had a peculiar smell that I will always associate with transformation. It was a mix of sweaty socks, bleach, and that peculiarly fresh, bright smell of winter—sweat, snow, and sunshine—that stays locked in your hair and hat and mittens. I entered the bathroom with one body and emerged with another that was not deformed: It was a skier's body, an able body. Nobody stared at my stump when I hopped out the door. Everybody looked me in the face.

My instructors called me "Supergirl," because I went so hard and fast that I nearly dropped at the end of my lessons, especially on runs that bottomed out to flat terrain. It is difficult for a three-track skier to travel on flat stretches without momentum, because he or she must use both outriggers to push forward the entire body weight; this is more complicated and strenuous than shifting side to side using skis and poles for leverage as able-bodied skiers do. Snowmobiles were offered on such runs, but I insisted on taking myself the whole way in. I felt the burn in my arms and the beat of my heart, and knew that I was working hard. I held tight to my nickname, because it fulfilled the desire to be extraordinary that I had developed as the poster child; to be, quite literally, super. It fed my self-image as a fantastic overachiever that had emerged when I was crowned a temporary star by the March of Dimes.

It was on the school playground that the pride I felt in my body began to dissipate, when I realized how it was viewed by some in the able-bodied world.

I had learned to play tetherball when my physical movements were restricted by a cast or crutches. Even after I was in my leg, I still gravitated to the yellow leather ball suspended from its long, thick string and secured at the top of a high pole. I loved the slap of the ball, steady and rhythmic, against my palm.

One day at recess, as the ball swung away from me, I saw a girl in my class, Rita, limping along nearby in an exaggerated way. She was bent over and trailing her hands along the ground like a monkey. She hobbled and then looked over her shoulder at me. I slapped the ball back to my partner. After taking a few more labored, limping steps, Rita stopped and looked at me again. I realized that it was me she meant to imitate. The ball returned, and I held it in my hands.

I clutched the ball to my chest and felt my heart pound against the smooth leather.
Do I look like that? Like an animal?
I remembered the man I had met in Schmidt's office, how strange his body and gait had looked to me; how my mouth had dropped open in surprise and another emotion I had not, at the time, fully understood. I thought of the amputees at Winter Park: What would Rita think of them?

The strength of my shame confused me then, because it felt like a physical force—it was overwhelming. I didn't know exactly how to name it or know it. But I felt the same hot, stirring motion in my chest that I felt in my stomach before vomiting. I thought,
I'm
ugly; I'm a bad person,
even though I knew it was wrong to think such things. But monkeys belonged in cages. People came to look at them through steel bars; they prodded them, teased them. I knew that people stared at me, especially during the summer when I wore shorts; I knew they gawked. I felt, in that moment on the playground, not so different from an animal after all.
Is that what
people really think about me?
I wondered. I held that moment inside of me as if it were a fragile bowl, a moment covered in glass.

Rita kept limping ahead and looking back at me, sneering. I kept playing, watching the ball carefully with my eyes. There was my hand, the slap, the limp, the look. I looked at her. I thought:
Enemy.

For weeks, I didn't play tetherball but instead sat on a bench reading and sulking, too afraid to be humiliated again.
Is that what
I look like?
I wondered again. Certainly not. But then why had I known Rita was imitating me? It was not the way I saw or imagined myself at all. Did she see me not as a disabled athlete or as the famous poster child, which was the way I had begun to see myself, but as a grotesque object of fascination, like the people with physical anomalies who used to tour in carnivals?
The bearded lady. The
four-hundred-pound man. The legless girl.
And if Rita saw me that way, how many more people did, too? I might be a skiing dynamo, but maybe that made no difference in the world of normal people. Mom told me repeatedly that I was just like everyone else, but now it was clear that to some I was not.

The situation with Rita made me feel hollow and transparent. I felt her ridicule had banished me to a world of freaks to be looked at only with disgust; she had rendered me useless on account of a visible flaw. A different, horrible reality had been presented to me, with myself and my strange body at the center of it. She had exposed me. Sometimes when I thought of Rita imitating me, I could hardly breathe. I had to do something to prove her wrong.

While Mom was making dinner one night, I walked the lines in the kitchen linoleum, carefully setting one foot directly in front of the other.

"What are you doing?" she asked. "Be careful walking by the stove, it's hot."

"Watch," I said. "Watch me walk." She did, holding a plate of lasagna in her two oven-mittened hands.

"Does it look good? Does it look right?" I asked.

"Of course it does," Mom said. "It looks fine. You know you have a good gait."

I had always been told this—
You walk so well, you get around so
well
—but it was a huge relief to hear it again. I found Dad hammering something in the garage and asked him to watch me walk up and down the driveway. "Looks great," he said, and returned to his project.

I continued to practice my gait—this asset—whenever possible. At school, I would practically sweat with concentration on routine trips to the bathroom, to gym class, to choir, following a straight line on the floor while in my head reciting,
Right swing left, right
swing left,
watching the others walk in front of me, staring at their feet, trying to match their movements and rhythm.

During recess, I continued to avoid the tetherball. As I obsessively surveyed the playground, searching for Rita, the girls on the double bars sometimes called me over to play with them. I sat on the back bar and slipped and locked both my feet under the parallel bar just in front of it, although I first double-checked the leg's waist strap, running my hands over the silver buckle—quickly, just once—to be sure it was fastened securely as the girls were busy scrambling up next to me, easy with their bodies as young children are. I always had myself precisely organized. Together we leaned back, five or six girls at a time, our feet hooked, until we were looking up into the sky and the world flipped over. On the count of three, we sat up quickly, chanting in iambic pentameter: "Open up the barn doors, kick out the hay. We're the girls from the U.S.A. Sittin' on the hay rack, sippin' root beer, turn on the radio and what do you hear? You hear Elvis Presley singin' a cheer." In subsequent verses, Elvis was replaced with Michael Jackson, Dolly Parton, the Rolling Stones. During these delicious, dizzying moments, I was just one of the girls.

I might have a disability, but I knew that I was smarter than Rita, and I felt it was crucial to emphasize this important attribute. I raised my hand for every question asked in science, math, and English, determined to beat her. Rita sat and scribbled in her notebook, and I became convinced that each of my correct answers was a failure for her. This was how I perceived the dynamics between us, although she had never imitated me again after that one incident and I had no idea if she was aware that we were competing. I watched her carefully. I knew what clothes she usually wore together and in what order; I knew where she hung her coat and who her friends were; I knew what kind of car her mother drove. I thought it was important to know the competition, know the enemy.