Poster Child (7 page)

Years later, when I began doing research into the history of prosthetics, one of the first images I came across was that of Captain Hook; one of the oldest images of a disabled person, this villain gestures with his hook-hand, his evil eyes narrowed in mischief. How, I wondered, had the idea of being a pirate ever comforted me?

Soon after, I had a vivid dream. I was on a pirate ship, being forced to walk the plank in my first wooden leg, with my blue flipper on my right foot; neither fit me properly, because in the dream I inhabit my adult body. Schmidt was there, too. He stood on deck with a heavy-looking wooden treasure chest balanced in his arms, telling me to come back, that it was dangerous, that he had a special gift for me that he couldn't hold on to much longer, but I hobbled on, dragging my left leg and then the right one in its ill-fitting flipper, unable to stop myself, wanting to feel the freedom of diving in the water. At the very end of the plank, I turned around and held out my hands for help, but it was too late; the heel of the SACH foot had gone over the edge of the plank without my realizing it, and I fell backward. Once in the water, the prosthesis dragged me down, fell off, and disappeared. The flipper came off, too, and I could not kick hard enough with my right foot to move anywhere. I was trapped underwater as the contents of the treasure chest, thrown overboard, emptied around me. Suddenly coins were everywhere; they shot into the water and whizzed past my face. I grabbed at them, and they made a dull clink against my fingertips. As I failed to capture a single one, the coins floated down and away, entirely useless and inaccessible to me, but still holding the promise of riches, gleaming and glittering gold.

Chapter Four

POSTER CHILD

In 1980,1 was chosen as the March of Dimes poster child for the Medicine Bow chapter of Albany County, Wyoming. Reporters from the
Laramie Boomerang
took pictures of me playing ball, climbing a rope, and doing jumping jacks in gym class. Photos were snapped as I strolled around in public parks, fed ducks, and sat beneath evergreen trees. Reporters were invited to document my participation in "Jump Rope for Life," a program to raise heart health awareness that was held each year at my elementary school.

When the photographers came to my house to take the official publicity photographs for the March of Dimes fund-raising and promotional materials, I wore a long-sleeved, blue velour shirt with a matching calf-length skirt and a gold necklace with the initial "E." On my right wrist, I wore the silver charm bracelet my grandmother had given me as a birthday gift the year before. It bore two charms: The first was a silver disk with the date of my baptism engraved into one side and my full name engraved into the other; the second was a tiny silver angel dangling from the bracelet by one thin wing. Mom fixed my long hair into two high pigtails and tied bows at the top of each with white ribbon.

I sat in front of the Christmas tree with my legs stretched out in front of me. I wore black Mary Jane shoes and thick white tights. With my hands folded neatly in my lap, I smiled up at my parents, at the reporter from the
Laramie Boomerang,
and at the March of Dimes representative, blinking into the camera flash and trying to keep my back straight.

While Mom and Dad were busy chatting with the reporter, who had come for a human interest story, Andy shook the biggest Christmas gifts piled against the back wall behind the tree to try to detect what was inside. I heard rustling behind me each time he picked up a wrapped package. Once I heard a shaking and then a jingle before the sounds stopped abruptly. I knew that was my gift; I'd asked for a plastic piano shaped like a dinosaur—Pianosaurus Rex.

I did everything the reporters and photographers asked of me. I stood up; I sat down again. I sat on the couch; I stood by the window; I posed in front of the oil painting of the Rocky Mountains that hung on the living room wall.

After the photo session, the living room with its pale blue love seat, gold fabric couch, antique rocker, and huge oak stereo looked as if it were under bright lights. I felt as though I had been changed into a new and exciting person. I felt famous; I felt singled out and special;
and
I knew what I was getting for Christmas. The camera flashes exploded like stars in my vision. I blinked again and again, waiting for the white flashes to recede.

Throughout that year and into the next, I made many public appearances as the poster child for the nation's leading organization dedicated to improving the health of babies by preventing birth defects. At each of them, I showed off my sleek wooden leg as if it were the latest fashion accessory. The newspaper headlines ran: DISABLED GIRL IS ACTIVE IN SPORTS; ALBANY COUNTY'S RAPP ATTENDS BUILDING DEDICATION; POSTER CHILD BUILDS HEART AND SOUL IN ANNUAL JUMP-A-THON. My six-year-old grin beamed beneath the March of Dimes motto: "Help Prevent Birth Defects." There were posters of me on the walls of Slade Elementary School. I attended luncheons at the Chamber of Commerce; I joined the Handicapped Ski Program in Winter Park, Colorado; I visited the governor in his Cheyenne mansion.

At church functions, at rodeos, and at other community venues and events, I spoke to crowds both large and small about how normal my life was and how happy I was—all in an effort to raise awareness and money for an organization designed to fund research that would prevent congenital birth defects similar to my own. I made proximal focal femoral deficiency sound attractive and deliciously unique. My speeches began something like this: "I might have one leg, but I'm not disabled." I explained myself away with a great deal of youthful zeal and confidence. "I was born with a different body," I said, "but it hasn't stopped me. If you believe in yourself, you can do anything."

Adults often asked, "How does it feel to be disabled?"

"I don't feel different," I replied, and I meant it. "I'm just like anyone else."

Kids asked me, "What things can you do with an artificial leg?"

"I can walk and run and ride a bike," I replied. "All kinds of things. I swim, too."

"Is there anything you can't do?"

"No," I said proudly, and at the age of six, I truly believed it. "Nothing." The applause was immediate.

I felt like the winner of a beauty contest, although I had received my title for an attribute that was certainly not coveted by others. I didn't care, because I loved the attention. I felt like a star.

People told me, "You're such an inspiration," and, "You're so brave." I believed them. I thought that as long as I was inspiring and fantastic, as long as I compensated for the missing leg by being smart, cute, intelligent, and fun, I would have a normal life. I would survive in the world. I even thought, for a long time, that it would be easy.

I had my fourth surgery over Christmas break, shortly after the March of Dimes publicity photographs were taken. My left knee was fused in order to ensure a better fit in the prosthesis. Although I was managing quite well in the leg, the stump's ability to bend often made me trip and fall forward. Dr. Elliot called it my "football knee." I had ruined countless pairs of "church tights" this way, and it was embarrassing to lose my balance and tumble to the floor. I had been promised that I would be able to run, so I ran everywhere, even if it meant falling over in midstride and tearing my clothes.

My left knee was fused through epiphysiodesis, an operation that creates a premature closing of an epiphyseal plate, resulting in the cessation of bone growth. The epiphysis is a part of a bone, often the end of a long bone, that initially develops separated from the main portion (the bone shaft) by cartilage. Scraping this layer of cartilage creates a bridge of bone that arrests growth. Not only would a fused knee make the residual limb more stable, but on an aesthetic level, if growth was stopped now, then my artificial and natural knees would line up, creating both greater ease of motion and a more realistic illusion of two normal legs.

When I woke up in the recovery room after the operation, I saw two bright yellow reindeer ornaments dangling above my bed. I reached up for them and saw that I had two hands as well, even though only one hand was in the air. Double vision. Looking down at my body, I saw two torsos covered in plaster. A body cast again. After vomiting, I felt better, and the double vision gradually disappeared, but I was back in a body cast and extremely unhappy about it.

"What is this?" I asked Dr. Elliot. "I thought body casts were over."

"Peanut, this is the last time you'll be in a big cast."

I desperately wanted to believe him. "The very last time?"

"Yep."

"You promise?"

"Yes, I do. No more body casts."

Mom stayed with me in the hospital. We did puzzles, ate oyster crackers, and watched ridiculous daytime television. It was Advent, so Dad read aloud the different versions of Jesus's birth in the Gospels. A nurse hung the reindeer ornament over my bed. He had brown beads for eyes and a red saddle stitched on his soft felt back; his black felt antlers were long and curved.

After my release from the hospital, I spent much of the holiday on my back, looking up through the branches of the Christmas tree at the twinkling edges of the ornaments. While I unwrapped presents, our dog, Muffin, stood on my cast, growling playfully and pulling on the bows with her little yellow teeth.

"Hey, look. A piñata," Andy said one night when he brought me a Christmas cookie. He held it in front of me, but when I tried to grab it, he snatched it away. Drumming his fingers on the cast, he asked, "If I hit you, what will come out?"

"Not candy," I said. "Poop, maybe."

"You're gross," he said.

"Give me that," I said, and he gave me the cookie.

Operations were scheduled during holiday breaks so I would not miss school. Christmas in the hospital was wonderful; there were carolers, candy stripers, festive decorations, and special meals. The Lutheran bishop of the Rocky Mountain Synod brought me a red poinsettia plant and blessed me with his hands. I was given a music box that played "Silent Night" as three painted porcelain angels moved in a circle; one of them held a silver star in the air, her smooth bare feet soaring high above the others' heads. I rang in the New Year with a new cast and a new scar.

I believed that something magical happened within the walled fortress of my casts. Bones dwelled, alone and unwatched, for weeks at a time inside those dark caves of plaster. I was sure that when the scars were finally exposed, secrets would be disclosed and conspiracies revealed.

The room where casts were removed smelled like rubbing alcohol. The tools were hard and slick looking, reflective as a room full of sharp knives. The electric cast cutter, held in the doctor's hands, whizzed and whined as it spun, moving closer and closer to me. Sometimes my casts were covered with pictures and signatures, food, and other stains—images and smells I had lived with for six or eight weeks. I had a particular attachment to a drawing of Linus and his blanket that a nurse had drawn on my upper thigh; I was sad to see him go, sliced in half under the doctor's hands. As the saw made contact with the stiff plaster, the vibrations shook the skin first, tickling it, teasing it. But soon the quakes felt electric and unstoppable. They rattled the twined fibers of the bones, making sure they were set and healed. As it broke apart, the cast made a terrifying noise, like thick layers of winter lake ice thawing and cracking in spring's first bright sunshine. It felt like being trapped in a building that was coming apart all around you. The friction of the cutter against the cast produced a burning smell. Shards of plaster floated into the air, and the doctor's hair and mine would be clotted with white specks that looked like tiny plastic snowflakes.

A nurse sliced away the dirty, smelly cloth between the skin and the plaster and used a flat, tongue like object to gently scrape off bits of dead skin. The stump was then washed with soapy water to clean the stinking skin and relax the atrophied muscles that had been trapped and immobile for so long. I thought of Lazarus, the sick man who had been wrapped in cloth and entombed in stone before he was raised to life again by Jesus. Risen again but altered how? I watched the nurse carefully, waiting to see how the stump had changed this time.

I never understood why the cast didn't fall away to expose a twisted mess of bone or something sinister and dangerous, something that would rise up and tell a story of danger and intrigue. Instead, a shrunken, meek-looking red stump appeared with a ripe odor and flaky skin that itched for weeks. After the smell disappeared and the wound healed, there was the scar: a secret sign that I wore like a hidden badge.

I was fascinated by the changing landscape of my body. I collected scars the way I collected storybooks or memorized Bible verses. The smooth white holes where the metal pins had held me together were proof that a dragon
had
bitten me. After the knee fusion, a crisscross pattern ran the length of my stump and resembled the stitching on a football; a half-moon of stitches above the heel looked like a crooked smile. The scars on my left hip were thick and lumpy, like bread that hadn't risen properly.

I loved my scars and their stories. I felt them with my hands and told them who they were: this one from a dragon, this one from a battle. They eventually went from red and angry looking to smooth and silvery white, the skin so shiny that it was almost reflective. After several months, the tender marks lost sensation. I could press my fingernail into them, but there was no feeling—the skin had fallen silent.

When I got older, I no longer found it necessary to tell myself stories about how my body came to be, I simply got up in the morning and put it together. It just was. A few buckles and straps, and the body seemed to fall together like magic or by accident. Any story of the body that a scar might tell was sealed off and silenced—a mystery.

I was in the full body cast for six weeks and used the tank again at school, although this time I was strong enough to push myself around without help. At first, Mom took me home during lunchtime, until Mrs. Nicolas, my first-grade teacher, offered to learn how to use the bedpan, allowing me to stay at school for the entire day.

In the teachers' bathroom, Mom showed her how to assist me: I was lowered onto my back, and the bedpan was positioned directly under the small hole between my legs. After I'd done my business, I was wiped off, lifted up, and positioned inside the tank. Mom made me special underpants to ease this process; she slit a pair of women's underwear up the side and then sewed Velcro at the seams so they could be removed easily. I wore long corduroy jumpers so I could sit in my walker or on pillows without being completely exposed.

Each year before school began, Mom met with my teachers. She told them that she did not want me to be treated as a handicapped child, as the term was then; she wanted them to know that she and my father had the same expectations for me that they would have for any other child. She told them, "We do not call Emily handicapped. We say that she was born with one leg shorter than the other and wears an artificial leg. She may have some limitations, but she is not handicapped." She was firm in this. "You are just the same as everyone else," she always told me. "Don't ever think you're not."