Poster Child (5 page)

The healing stump was wrapped in an Ace bandage, and I used crutches at home, but at preschool I continued to use the tank.

I wore long jumpers to cover the Ace bandage, but I was known for plunking my stump out in public when it itched. Singing in the church choir, I often sat down and started scratching, with my jumper hitched up around my waist. Mom and I had a discussion she called "stump etiquette."

"Don't plunk your stump," she told me.

"It itches," I said. "I itch."

"We don't itch ourselves in public."

"You
don't itch!
I
do."

"It's not ladylike."

"I'm not a lady," I replied. And I didn't feel like one. I had walked with a tank; I wanted to be gritty and strong; if something itched, it made sense to scratch it.

"Well," Mom said, "soon you'll have a new leg. A prosthesis." That word sounded awkward coming out of her mouth, as if she were trying to hiss like a snake. This made me giggle. She continued, "And then things will be different. Things will be better." After the healing process was complete, I would be fitted for my first artificial leg. I'd heard this story before and had ended up in a cast.

My parents showed me pictures of what this newest part of my body would look like: My left leg would be made of shiny, light brown wood.

"When you grow," Dad said, pointing at the area where foot and ankle met, "we'll put something extra here, to make it longer, so you can have this leg for a long time."

The SACH, or Solid Ankle Cushion Heel foot, was a flexible rubber shell that fit around a wooden core. When I took a step forward, the heel of the foot would compress and the toe area would bend. As I grew, length could be added at the ankle and the foot screwed back on again with a thick bolt that was tightened or loosened by the prosthetist. Essentially, the leg would grow with me, only the prosthetist would be responsible for its growth.

"Will it be like the big table?" I asked.

Dad waited for a moment and then seemed to understand. "That's it," he replied. Whenever we had big dinners at Christmas and Thanksgiving, the oak table in the dining room was pulled apart and a piece of wood sandwiched in to make room for more people.

"My leg is like a table," I said, giggling.

"No, it will be a leg," Mom said with a serious look on her face. "You're going to love it." She suddenly looked enthusiastic. I wasn't sure I trusted her smile. "We're going to make it work."

I would be disappointed with the SACH foot. It was the thinnest foot around, but it was still bigger than my right foot and wasn't terribly functional. Only after my left hip and stump began to ache from the impact of running, skipping, and jumping rope did we learn that it was designed, according to the prosthetic company, for "moderately active to less active amputees." In short, I would be too active for that first foot.

At the time, as I looked at pictures of SACH feet, they looked all right to me. I didn't understand anything about compression, but the foot and even the leg itself reminded me a bit of Barbie's long, slim legs and sleek feet without toes or veins. A clean look.

"You'll learn how to walk with the new leg," Mom said. "It might be difficult at first, but you'll learn. Okay?"

"Okay," I replied.

Dad nodded. "That's right," Mom said.

For a few weeks, my stump, when it was briefly free of the Ace bandage, was a red and shriveled thing, like a mutilated, blood-soaked baseball bat. The skin smelled rank, and the bones inside felt like noodles. Noodle bones. I had a stuffed dog named Feather at the time, a beanbag dog, and his flexible back and body seemed more substantial than the bone that would fit into the artificial leg, but I was tired of the crutches and the walker. If Mom and Dad said it would work, then I believed them.

These were my first real memories of my body. They were al ready memories of a body that would be no more, that was on its way out, disappearing. I remember little of a flesh-and-blood foot, just isolated moments and then the memory of the loss. What I remember most is being told how and when I was going to lose the foot and what would happen next. I thought of myself as linked to Super Stump, the stump I'd been given, the way I could move the muscles on the bottom and the side; the way it was rounded like the end of a bat; the way I could bend it like a length of flexible tubing and fold it across my right leg in order to sit cross-legged on the floor. That was my body. At this young age, I simply accepted the body as it was, while also feeling anxious to be more mobile, to really
move.

Chapter Three

A PIRATE'S TREASURE

I crouched on the edge of the pool platform, preparing to dive. The smell of the pool was deep and dark, not unlike the smell of the room where Communion vestments were kept at church. When I pulled out the small, cloth-covered box full of wine and wafers that Dad used to take Communion to older parishioners—we called them "shut-ins"—who could not make the journey to Sunday services, it felt like encountering some dusty secret; the bottom of each thimble-size wine goblet was tinted red and smelled vaguely of vinegar. These odors and stains suggested that the shadow of something holy remained, some crucial remnant had been left behind for the next user to divine and ingest, linking all the communicants to one another.

On that day of my first dive, there was something secret about the water, although it was clear and emitted the scrubbed-clean smell of bleach and chlorine. I had seen many people dive off this same ledge, and today it was my turn. Without my glasses, the black lane markers were blurry; they looked like slow-moving caterpillars under the rocking motion of the water as people getting in and out of the pool disrupted it. My private swimming teacher, Ann, stood at my side, coaching me.

I tipped back and forth on my right leg until I could balance in a crouched position; the blue flipper on my right foot squeaked against the wet tiles. I looked up and noticed people staring at me in my blue one-piece swimsuit, with my stump hanging stiffly next to my body like a kickstand. I looked back at the water and took a deep breath.

"Hold the stump close to your side," Ann said. "Put your arms over your head. That's right. You've got it."

I wanted to dive to a specific point in the water, to the middle of one of the black caterpillar lines, as if there were something special there for me to find. I steadied myself, hunched over, and finally dived into the water. My head went under first, then the cool water closed over my back, my butt, and finally my right leg and my stump. I felt as slippery and slick as the tiny rainbow trout Dad taught me to throw back into the river after we brought them up, wriggling, from the ends of our fishing rods. I felt absorbed, taken under, and enveloped; the water was a cool hand guiding me forward. My body felt light and remarkably even, its asymmetry balanced and supported by the softness of the water.

When I came up for air, I heard Ann clapping. The applause echoed against the pool walls, and I hoped that all the people who had been staring at me were listening to this praise. I began to swim, first freestyle and then the breaststroke; I had been practicing both moves all summer. The fin on my right foot made me feel like a fish cutting gracefully through the water, headed to the other side of the pool. When I flipped over to my back, I heard the tide of my breath in my head, powerful and rhythmic as a wave; my single foot was strong enough to move me through the water. The stump didn't do much, merely bobbed and floated like a buoy. The right leg took over on its behalf, compensating, kicking, and shearing the blue water. I was dividing a space with my body versus being divided: by a surgeon, by a prosthetist, by a wooden leg that was removed each night and lay by my bed until morning.

After reaching the other side of the pool, I lifted my head, triumphant. I hoisted myself onto the ledge. A little girl who was walking past stopped abruptly. Water dripped from the ends of her hair as she stood staring at me until a woman steered her away by her wet shoulders.

"Great," Ann said, putting her warm hand on my back. "You did great."

I loved to dive. I progressed steadily in ability until I could do jumps off the springboard, hopping up the first step and then crawling out to crouch carefully at the edge of the board, maintaining my balance. Just once I would plummet off the high board, letting every person in the pool have their moment to stare at me, the one-legged girl descending in a smooth arc into the water. I felt powerful, and I thought about my body in a new way, although the high dive itself had absolutely terrified me and I never did it again. Later, I would understand that learning to dive was my first experience of my body as capable of powerful, fluid, and beautiful motion. In those moments when I rounded my back, tucked my chin, and tipped gracefully into the smooth, accepting water, I was aware of the song that a body creates when it is released for just a few moments from its regular rules and restrictions and from the expectations of the person who lives with it. I felt the beauty of movement when the person who inhabits his or her unique form is perfectly content to do so, as if it were unimaginable being any other way.

At that time, a photo was taken of me with another amputee who was in her early thirties. We stood against a tile wall in the locker room, smiling, sharing just two full legs between us. I was thrilled to meet someone who was like me. She had long brown hair, soft-looking skin, and a bright smile. After Ann took our picture, the two of us put on our wooden legs. Mine was newer and shinier than hers, but they were similar models. Both had metal hinges on the outside of the wood; both were suspended from our bodies by a cloth strap that buckled just above the pelvis on the left side of the body.

Years later, when I looked at that photograph, I felt horror at my body and particularly at the woman's. By that time, I was used to seeing models in fashion magazines and judging my own appearance by the ways in which it compared with—and fell short of—theirs.
Who would ever want this woman?
I found myself thinking, and by
want
I meant
love,
as if these two expressions of desire were interchangeable. In the photograph, both of us were beaming.
What
does she have to be so happy about?
I wondered bitterly, although arguably she and I shared a similar fate. I looked over at my younger self, who was wearing a similar genuine smile, who would grow up to be a similar disabled woman. Although I destroyed the photograph, I often thought about the woman standing next to me and wondered what had happened to her:
Did she marry, did she have
children, did she love her life, did somebody love her?

Two and half years earlier, in January 1979, I had finally received my first wooden leg. For my first fitting, I stood barefoot on the dirty floor of the changing room while the prosthetist took measurements of my stump. The stink of the healing wounds was finally gone; the limb was clean. Now that the left foot had been removed, or "disarticulated"—the sharp sound of the word matching the rough nature of the action itself—I had my natural heel at the end of the short leg.

For two months before the fitting, I wore a walking cast that looked like a pirate's peg leg; it began at my hip and narrowed to a cone of hollow plaster that extended past the end of my stump. It looked like an ice-covered tree limb and was fitted at the bottom with a rubber knob.

"For traction," Dr. Elliot told me, pointing at the knob as he helped me put on the cast in the examination room.

"So you don't slip and fall," Mom said. I leaned my weight on the cast and took a few stiff-legged steps.

Dr. Elliot saluted me and said in his best "pirate" voice, "Harrr . . . who goes there, missy?"

"Harrr," I replied, and bared my teeth in a piratelike grin.

He and I laughed. Mom looked pale.

As we walked through the hospital corridor on our way to the parking lot, I asked Mom if I could get an eye patch to complete my pirate outfit. She refused. "You are not a pirate," she said. The tone of her voice warned me not to push it.

Dr. Elliot's pirate image stayed with me long after I stopped using the cast and began walking with a wooden leg. I envisioned myself as the solo sea-weary girl preparing to embark on a grand adventure. I wanted to battle foes and fight for the underdog; I would be a combination of guts and glam, beauty and strength, with my unique body—like a one-of-a-kind sailing ship designed to withstand dangerous waters—propelling me into the unknown world.

Rinehart Schmidt, my first prosthetist, had an office on a busy street in Denver near the Capitol building. It was next door to a bar and grill; the changing rooms, which were brown and windowless, always smelled of French fries and frying hamburgers. The bathroom was in the corner of the back room, where limbs-in-progress and other prosthetic parts—feet, calves, hands—were kept propped up on plaster pedestals or leaning against walls. Saws, hammers, screwdrivers, and other metal objects were scattered over two long worktables that ran the length of the room. A dusty transistor radio atop an old refrigerator was always tuned to a country music station. The toilet seat in the closet-size bathroom was bumpy and uneven, as dried plaster had been spilled on it and never cleaned up; there was no mirror on the wall and no soap for your hands on the sink. Often I had to yell through the door and ask Schmidt to bring me a roll of toilet paper that always smelled like cigarette smoke after he cracked open the door and tossed it through to where I waited on "the John," as he called it. Through the bathroom wall, I heard the clink of dishes being washed at the restaurant next door.

Schmidt was a short, wrinkled man nearing retirement. While he was making adjustments to the leg, he often smoked cigars or cigarettes, letting one or the other dangle from his mouth. When Mom asked me what I thought of him, I replied, "He's older than God."

Schmidt's bald head sweated constantly. A single piece of white hair swept over the dome of his freckled head. Sweat dripped from the end of his hair onto his cheek or rolled off his long nose and landed, trembling, on the edge of his lip. The handkerchief kept in his lab coat was covered in yellow and black stains and clumps of dried plaster, but he wiped his sweaty forehead with it anyway. The first time I met Schmidt, he cuffed me lightly on the shoulder and said, "Who's looking pretty today?" He had fat fingers, and his palms were wide and rough feeling, with deep, painful-looking cracks, as if he'd been rubbing them with sandpaper.

"Let's see what we have here," he said. Standing on one leg, I leaned against the examination table. Schmidt sat on a low stool with wheels and examined my stump, gently tracing my new scars with the callused pads of his fingers. The scars on my hip were bumpy and sometimes slightly tender.
What
did
we have here?
I wondered, and felt nervous. I stared at the top of Schmidt's head; I watched to see if his eyebrows raised at all, trying to track an expression. "Hmmm," he said, and looked up at me, grinning. I smiled back, hoping this exchange was a sign that things were okay, that what we had here was good.

Schmidt cupped the bottom of the stump in his palm and pushed lightly, then harder, watching me, then harder still until he saw me wince. "Good for weight bearing," he said, and stood up. "We've got this little bone on the edge here," he said, running his thumb over my original ankle bone—it looked like a little marble embedded in the skin. "That will be tricky. Could cause problems."

"What kinds of problems?" Dad asked. He stood next to me with his arms crossed.

"We just make sure there's no pressure there—we hollow out that part of the socket. Otherwise"—he rubbed his hands together—"there's friction, then sores and pain. Can't have that." Schmidt ran his hands once more along the length of my stump and then rolled on his stool to the cabinet in the corner, leaving the odor of stale smoke in his wake. "It's a good one," he announced while rummaging through a drawer. He nodded over his shoulder at me and then at Dad, who said, "Okay!" in a bright voice. I nodded, too, relieved, although I wondered what a bad stump would look like. Was it possible to move easily from bad to good? If so, how could I make sure that my stump stayed on the good side of things?

Schmidt rolled back over with measuring tape. Dad and I watched as he wrapped the tape around the stump in five different places: at the fattest point near my hip; then in the middle, where it narrowed slightly; then at the lowest point where it tapered to the heel. As he worked his way down, he recorded each measurement on a piece of paper folded over his knee. Leaning over to get a closer look, I saw a light pencil outline of a stump with blank spaces next to it for the numbers. His touch was light and quick. After he measured the circumference of my right thigh, I hopped up on the examination table and waited. The backs of my legs stuck to the table, as the rooms were always too warm and badly ventilated—not a window or a fan in sight. I was reminded of summer cross-country trips in our station wagon with its sticky vinyl seats.

Schmidt disappeared from the room for several minutes and returned with a bucket in one hand. Rolls of white plaster of paris were wrapped around both his arms, from the wrists to the elbows. He sloshed water all over the floor as he moved to set the bucket on the plastic sheet. He shook the rolls of plaster from his arms. I stood still, awaiting instructions.

"Now we'll make the mold," he said, and dunked one roll of plaster into the bucket, where it quickly softened and expanded in the water.

Before Schmidt could make the main part of the leg—called the socket—he first needed to make a cast. After the stump was covered with a thin, soft cloth called the cast sock, it was encased in long strips of wet plaster. When the cast was complete, the prosthetist's hands would be white up to his elbows, the grainy plaster embedded beneath his fingernails.

Schmidt brought out the rolls, dripping wet. Seated on the table, I held the cast sock up in front and back. He wrapped the warm, wet strips around and around my stump, all the way down to the rounded end. After wrapping the heel a few more times, he gave it a pat, which tickled a bit. He smoothed the plaster around the small ankle bone as if he were molding clay or Silly Putty. As he worked, I sometimes felt stabs of pain, especially as the wet strips became heavier and heavier, but I said nothing. While in the hospital, I was constantly commended for being brave, for not crying. I wasn't about to upset that trend now. The prospect of this cast did not upset me; it would be removed in twenty minutes instead of six or eight weeks, and there would be no crutches, no walkers, no tank, no scooter, and no Ace bandages.