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.
A few weeks later, a line of single strings dangled from the ceiling of our classroom. We were hanging stars with our reading goals on them in order to "reach for the stars"—as our teacher said—and finish our books before the end of the year.
Rita was standing behind me as I waited to hang my star, and my neck was already burning before she whispered in my ear, "You can't do that, Emily, because you're crippled."
The way she said the word made me feel as though the air had collapsed around my face and become strange and ugly. It made me feel as if I wore a crinkly, cripple hat, the only one of my kind, and I would be forever singled out. Deformed. Unwanted. I felt like one of those people on television that others called in to help with their monetary pledges, a charity case. I pitied those people who sat in their wheelchairs, but I had never connected my plight with theirs. Pity: the dirtiest word. I was not like that, I thought. But Rita had hit me with the word "crippled" and somehow defined me, evoking a small world of undesirables. By making me feel so different, so wrong, she'd made me disappear, she'd forced me lower, forced me down. She'd done it again.
The late afternoon sun streaming through the classroom windows was hot on my back, and that heat spread quickly through my whole body. Shame again, that vomit feeling, that hot ball of corrosive anger in the belly. Up on that chair I went and hung my star, crippled or not. I thought about skiing down my favorite slopes, about my sleek and able body; I thought about what one of my instructors had encouraged me to do when I faced a challenging run: "Growl at the mountain!" she'd shout as I moved into a difficult turn on an icy patch of snow. "Get angry! Growl!"
I jumped off the chair and landed on both my feet. I felt the wooden lip of the prosthesis jam up into my butt and crotch, and I knew there would be bruises. It didn't matter. What mattered was that I won the game I had created in my mind. I looked Rita straight in the face, stuck out my chest, and said, "See? Did it." I could ski and jump and run, and I wanted her to know it. Then I pushed her as hard as I could. Rita fell back and landed on her butt. Her eyes registered anger, but also surprise and, behind that, a kind of satisfaction. I felt, strangely, that I had lost this battle in our unspoken war, even though I'd done exactly what I had intended to do. My face was burning. I would have pushed or kicked her again, and harder this time, but the teacher intervened. When she asked me why I had attacked Rita, I would not tell her what had been said; I refused to repeat the words out loud.
I had to sit in the corner for the rest of the afternoon, but I sat there happily, lit from inside with a righteous, powerful rage. This deep anger, the depth of which I was just dipping my foot into, like testing the force of a stream of fast-flowing water with one toe, comforted me somehow. It focused me and inspired me to achieve, to prove myself. I watched Rita for the rest of the day and told myself, You are just like her, you are better than her. I could do it, and I had proven that I was not a cripple. I had proven that this word did not apply to me, but I did not forget it entirely.
One morning that year when I had the flu, I was lying in bed, listening to the sound of the aspen leaves clapping together in the trees outside my window. I watched the round shadows of the leaves move over the posters on my closet: Madonna's made-up face; a fawn at Yellowstone; a drawing of two identical Garfield cartoon characters where one is saying to the other, "Be your own best friend."
I tried out the word, speaking it aloud: "Cripple." The shadows moved slowly back and forth. They seemed lazy and relaxed; the leaves rustled together and moved apart. Nothing happened. No God-like voice boomed out of the sky to correct me. Mom was upstairs and couldn't hear me. "Cripple," I said, louder this time. "Crippled." I never spoke those words out loud again. I didn't need to, because they would never again leave my mind. Worse, they already felt true.
What I had learned as a skier was a complicated freedom. While disabled athletics had taught me to view my body as capable and strong, part of my pride stemmed from the way others regarded me, the way I exhibited for others my superior strength and extraordinary resolve. Rita had shown me that no matter what I did, no matter how able or powerful I was in certain situations, I still looked wrong. This was my first taste of the competition that would haunt me. I decided, at that moment, that it would always be about looks. Nothing else mattered. It was about your body, your face, the way you walked, the way you looked, and, most important, the way others looked at you. I worried that I would never measure up; I would never be able to compete, but I would make myself crazy trying.
After the incident with Rita, my attitude toward other amputees changed. While most three-track skiers at Winter Park left their legs off when they went into the cafeteria for lunch, using their flipped-up outriggers to move around, I changed back into my leg. I began to separate myself from the group of athletes that had welcomed me so easily, judging them the way I felt Rita had judged me—as different, deficient, even freakish—and I no longer wanted to be a part of them. I was all about solidarity on the hill, but when we were back in the lodge and in the presence of other able-bodied people, I lost my loyalty. I wanted to again be normal, or as close to normal as it was possible for me to get.