Poster Child (3 page)

Dr. Brown prescribed Buck's traction from two to nine months of age. This called for wrapping my left leg in an Ace bandage and weighting it so that it would be flexed, abducted, and externally rotated. This was done every night and at nap time. The leg was kept as straight as possible so that it would not begin to turn and twist like the gnarled roots of an old tree. The traction was designed to prevent contractions in the weaker muscles and keep the left leg from springing up into my chest while I was asleep. By keeping tension on the muscle, it made sure the head of the femur bone (the thigh bone) was placed solidly in the hip joint. I would often wiggle out of my stretching machine, my body already resisting the efforts to make it straight.

In May 1975, when I was ten months old, I got my first brace, which was made by a small company in Grand Island. "They weren't exactly used to making kids' stuff, but they did a good job," Mom recalls. She said that I reminded her of Chester from
Gunsmoke,
who walked with a straight leg and couldn't bend his knee. "You were cuter, though," she said.

The brace was made of straight metal rods, a flexible but durable plastic sleeve that hugged my thigh, and a thick cloth bandage around the knee. It was attached by a long canvas strap that wrapped around my waist twice and buckled in the front. Wearing a stiff orthopedic shoe, the left foot was strapped inside a foot cage and suspended a few inches above a moon-shaped rubber bolster that, with its slight sponginess, mimicked the natural energy return in a flesh-and- blood foot and eased forward motion.

Mom wanted me to walk by myself at a time consistent with normal developmental standards, but she wasn't sure how I would maneuver the brace. She tried to imagine having one, thinking she might be able to teach me if she learned how to do it herself. She sat on the floor and attempted to keep her left leg straight as she stood up. "I couldn't do it," she told me. "I just kept falling on my butt."

So Mom tried something else: She put my favorite doll in my stroller, rolled the stroller into the dining room, and then locked the wheel brakes. She sat me next to it and went into the kitchen, where she wouldn't be as tempted to help me stand up but could check my progress periodically by poking her head around the corner. I loved that doll—a little teddy bear with a soft cloth book in the middle of its tummy—and I went for it, just as Mom had expected I would. "You puttered around for a little while, tried to lift yourself, and fell. You grunted a little; it took effort. I watched you then from the kitchen, keeping my hands busy with dinner so I wouldn't run over to help you. Finally, you gripped the edge of the stroller with your hands, pushed yourself up with your right leg, and used the knob of the brace to lift up the final few inches." After that, she told me, "you were steady on your feet and walked as well as any kid. You got used to the brace and learned how to move. You took your first steps at thirteen months and were walking alone at fifteen months." Mom was very proud each time I accomplished a particular physical skill at the correct developmental time, and she dutifully recorded these triumphs in my baby book.

As soon as I became mobile, the questions began. Whenever she was asked, "What happened to your baby?" Mom replied, "Oh, she is okay. She just has one leg shorter than the other, and the brace helps her walk." She became comfortable with this standard response. It didn't bother her when children asked her what was wrong with me; she felt that their curiosity was innocent and natural. She got annoyed only when adults asked or, worse, expressed condolences ("I'm so sorry; it must be so hard") or dispensed useless advice like "There are medical advances every single day" or "God works in mysterious ways; at least she looks happy." And according to my mother, I was.

Around this time, a picture of me and Andy appeared in the local paper. We are on the merry-go-round in the town park on a warm autumn afternoon. Andy balances on one foot, one hand gripping a metal pole; his brown hair is lifted off his forehead by the light wind our slow spins create. I stand with my brace and my right foot locked together on the platform, both arms wrapped tightly around one of the poles. Andy is looking straight at the camera, and I am looking at him; we are laughing. I loved the merry-go-round, especially when Andy pushed me around so fast that the ground and the trees began to blur to colors instead of objects. I loved that feeling of floating, of being released from my body, spinning through the air, unable to see how I moved, just knowing that I was moving.

In March 1976, when I was one and a half years old, Dr. Brown performed my first surgery at Lutheran Hospital in Grand Island. I had an osteotomy, a surgical incision into the bone to control a deformity. The controlled fracture corrects the angulation of the femur bone so that its head will fit firmly into the hip socket and provide good motion of the joints. My femur wasn't as straight as it needed to be—the months of Buck's traction had apparently done little—and this operation would allow my body weight to be carried by both legs more easily. Later, at orthopedic appointments, I poked at the thigh bones of skeletons, watching the rounded knobs of the two perfect femurs move in the hip sockets and listening to the bones rattle.

The operation took place during the season of Lent, when followers of Jesus are asked to prepare themselves through self-reflection and repentance for the death and resurrection of Christ. For this reason, Mom remembers feeling particularly dark and somber. This first surgery was not performed in a children's hospital, and there was trouble inserting the IV into my small veins. The nurse tried to enter the vein again and again; it was painful and frightening. Finally, Dr. Brown, with the help of Mom and Dad, held me down as the appropriate vein was accessed with the needle. My parents would be sure that the rest of my operations took place in a children's hospital, where the nurses and doctors would have experience poking tinier veins. After this incident, I was an uncooperative patient: I pulled out the hard-won IV twice after the operation. If I saw a needle coming in my direction, I pitched a screaming fit. Pills given to calm and sedate had the reverse effect, making me more agitated and belligerent.

During the surgery, a full (hip spica) body cast was fitted over me from midchest to knee. My right leg, from knee to foot, was the only part of the lower body not covered with stiff white plaster. My thighs were held apart by a metal bar; my bottom half looked like a wishbone ready to be pulled apart. Some friends rigged up a walker by removing the regular seat from a small table with wheels and suspending a bicycle seat in the middle of it. I could sit upright and play with my toys on the table and eat standing up. I was also propped up on pillows on the floor or in my crib.

My parents often put me in their bed and slept one on either side of me, because Mom thought it was important that I be turned during the night. They woke up at two-hour intervals and carefully, slowly, turned me onto my back, then my stomach, then my back again, all through the night. The cast was on for eight weeks; after that, I was back in the brace.

In February 1978, our family moved to Laramie, Wyoming, where Dad had accepted a job as the pastor of Trinity Lutheran Church.

Laramie, called "the gem city of the Plains," is set in a valley between two mountain ranges in southeastern Wyoming, about one hour west of Cheyenne and three hours from the Colorado border. The land was not as green as it had been in Nebraska, but the air was fresh and arid; the streets were lined with cottonwood and aspen trees. The foothills in the distance were spotted with evergreens and scrubby sagebrush. At night, you could almost always see the stars.

Mom worked long hours as a nurse in the local hospital. I felt her warm presence, late at night, at the edge of my bed. She put her hand on my forehead and kissed me. I heard the soft click as she turned off my kitty-cat-shaped radio, the music gone now to static when all of the Wyoming stations finally went off the air. I often fell asleep in church, and Dad scooped me up in his arms as he left the sanctuary at the end of the service. I woke up staring at the faces of parishioners who had turned in their pews to watch the two of us. I felt Dad's steady steps—his practiced, processional prance—and inhaled the scent of his heavy clerical robes: pine trees, musky sweat, and dust. The deep notes of the organ vibrated through the air.

Surrounding our new house were rows of yellow shrubs that Andy and I called "bee bushes" because there were always fat bumblebees hanging from the bright yellow flowers. We took empty jelly jars, trapped a bee on a branch inside the jar, and then ripped off the branch and screwed the lid on tightly, with the bewildered bee still inside. We punched holes in the top with a screwdriver and watched to see how long the bees lived; they flung their fat, disoriented bodies against the glass, buzzing wildly. After they died, we dumped their shriveled corpses in the backyard.

Daddy longleg spiders were also easy victims, as they were relatively easy to capture. I picked them up and pulled off one of their legs—as easy to do as unwinding a long hair from a hairbrush. It seemed to cause the spider no pain at all, but when it tried to move, its coinlike body fell over to one side; it could not walk when it was so lopsided. Finally, at Andy's insistence—"Kill it, just kill it!"—I crushed it with the palm of my hand, pressing the flat body into the driveway and leaving a gooey smudge on the concrete.

Andy and I also had a rotating collection of salamanders that we pulled out of "Stink Lake" in LaBonte Park. In the springtime we took them from the water, and during the summer we found them under logs and piles of damp leaves. After we had removed them from their natural habitats, we waited for them to die in the old fish tank we used as their temporary home, denying them food and water. Their moist skin began to dry up and they began to look shorter and shorter, even with their long tails. It didn't take long: A salamander averaged several days; the sturdiest one lasted a week. We called them "Chip" and "Bob," short names to match their short lives. We often had one or two captives in various states of near demise. When they were about to croak, they went from green to brown to a sickly gray color that matched the rocks where we'd found them or lifted them from the dirty water.

I found a shameful but exhilarating joy in this cruelty to helpless creatures. I experienced a guilty, unsettling power when I took control of these small lives. I knew I was going to have "the big operation"—as my parents called it—and I was going to have it soon. I knew that my left foot would be taken away. Instead of walking with a brace, I would use a fake leg made of wood. I would be able to run and skip and even ride a bike. I didn't mind the brace so much, and although I didn't like needles or the smells of hospitals, and I hated being immobile in a hospital bed, I did enjoy the attention I received from Mom and Dad, from people in my church, from neighbors, nurses, and classmates. The one good thing about going under the knife was getting to be the center of attention, getting to be the star.

As Andy and I conducted our experiments, I watched how the small creatures I tortured dealt with deformity when it was thrust upon them. What I learned was that they didn't survive very long, yet there was something powerful about their struggle that was horrible but fascinating to watch. Andy always wanted to end the suffering by squashing the bug before it died. "Stop!" he pleaded.

"No," I often replied to his requests for mercy. "Wait."

Part of me wanted to see how long these creatures could last. I wanted to be a witness to their resourcefulness, as if their limits were in some way a gauge of my own. Part of me expected a miracle, as if the daddy longleg spiders could grow back their thin, eyelashlike legs or the salamanders would swim away when we dumped their lifeless bodies into the polluted lake. The expectation of the miracle always seemed much more important than whether or not it actually occurred. "God be with you," we said to one another at church. "The Lord be with you. Peace be with you." Certainly if there was going to be a miracle, God—who was with me always, every moment of every day—would make sure that it happened to me. The smaller, more helpless creatures of the world were on their own.

Chapter Two

THE BRICK HOUSE

In April 1978, still wearing the metal brace, I met Dr. Elliot at Denver Children's Hospital. He had successfully treated several other patients with PFFD and would be the doctor to perform "the big operation," as it had come to be known. I liked him; he called me "peanut" or "Miss Emily" and always had a different stuffed animal with him that he let me hold and chatter to. He had a pleasant smile. He grew up in Tennessee and had a soft southern accent.

Dr. Elliot recommended a repeat osteotomy (the earlier one had not held), together with amputation of the left foot and the insertion of a permanent plate in the left hip area. I liked the way he talked to me—not just to Mom and Dad—even though his explanations were beyond me. I did understand "hip" and "plate." For a long time, I imagined one of our nice china dinner plates embedded in my hip, the kind that were used only at Christmas and Easter. It gave me comfort to think of the plate there, as if the doctors had been kind enough to leave behind something from home after they cut me open and started moving things around and putting bones into their proper place.

Dr. Elliot explained that the only way to effectively manage PFFD was through amputation. The percentage of bone shortening is progressive. For example, if the defective femur is 50 percent shorter than the other, as both legs grow, this discrepancy will persist. The body stays geometrically aligned, maintaining its given shape as if asymmetry had been the plan all along.

There are various levels of severity with PFFD, ranked from A to D using the Aitken classification; a grade D indicates the most severe case with the most potential ambulatory problems. I had a grade B, and with it came associated fibular hemimelia (a term that includes fibular abnormalities, limb-length discrepancy, and other related issues). My knee joint had a ring meniscus instead of one that was semicircular and was therefore unstable. The only way to get the solid, weight-bearing segment required for walking in a prosthesis was, as Dr. Elliot recently explained to me, "early ablation or removal of the foot by ankle disarticulation." Essentially, as I later told kids at school, "my foot got sawed off"—and this wasn't so far from the truth. After the procedure of Syme's amputation (named for James Syme, who invented this method of amputation in 1843), I would be left with a weight-bearing stump that, with the help of an artificial leg, would have to do the job that the original "birth leg" was unable to perform.

On May 26, 1978, a few months before my fourth birthday, I had the repeat osteotomy, and my left foot was amputated to ensure a chance for a better-fitting and more aesthetic prosthesis in the future.

The nurses sang a song from the musical
Annie
as the anesthesiologist fitted the clear plastic mask over my face in the operating room and I began to count backward slowly from ten. The mask was like a toxic flower, and with my nose pushed deep into its dull, gray-colored petals, I was being forced to inhale its dangerous scent. The anesthesiologist stared down at me as the flower-venom disintegrated in my mouth. I was already too tired and too heavy to struggle. "Good job, good girl," the doctor said, and the notes of "Tomorrow" faded into silence. My breathing slowed. My muscles loosened. The anesthesiologist's big hands held the mask to my face. His nose was round and slightly red; sweat leaked out from the edge of his blue cap. I would never be able to snorkel or dive without thinking of that mask. Having plastic in my mouth or over my nose always makes me feel as if I am about to inhale a substance that will put me to sleep and when I wake up part of my body might be missing, gone forever. The nurses' blue caps blurred together, and all the voices stopped. I never got past the number seven before I was completely asleep, floating in a dreamless oblivion.

I regained consciousness in the recovery room with my head over a plastic bowl, vomiting. Recovery is a misnomer for this room, as little recovery happens here. What happens instead is discovery: What's been taken, what's been fixed, what's in a cast, where does it hurt?

I looked down at my body. My left leg looked like a rounded, batlike object, covered in plaster. The foot was gone. I looked around: Maybe it was nearby, maybe in the next bed. No. When I turned my head, the world spun a bit; when objects were clear again, I saw, on either side of me, beds with side rails holding sleeping kids wearing casts that were slightly different from mine. The girl next to me woke up and vomited, too. She looked at me, bewildered, and started to cry. The sharp odor of her vomit was a sting in the air. Two nurses appeared to comfort us and wipe our mouths. I wanted my mother. When I tried to sit up, I realized I could not bend at the waist. I put my hands on my stomach: plaster there, too. I tried to shift my weight but could not. I could not bring my legs together; I could hardly move. Now I was angry as well as confused.

"What's this?" I asked, batting at one of the nurse's arms as she helped lift me onto a rolling stretcher.

"That's your cast, honey. You're going to get all better now." I knew she was lying. I was trapped again inside those walls of thick plaster.

As the nurses wheeled me from recovery back to my room and my waiting parents, I kept screaming, "Let me out of this brick house!" Even though it hurt to do so, I pounded my fists on the body cast, trying to break it open. I continued throwing a fit and did my usual act of resistance: repeatedly pulling out the IV and then wailing and crying when it had to be reinserted.

Before the surgery, a different nurse had tried to explain what was about to happen to my body by using a stuffed doll with one leg, but the doll didn't look right and I didn't want to play with her. When the nurses left, Dr. Elliot sat next to me on the hospital bed and showed me a small picture book that told the story of a girl's amputation.

"See this pretty little girl, she's just like you," he said. I still didn't recognize myself as the girl with the bandaged half-leg; my leg was going to be
wooden.
I figured Dr. Elliot just hadn't understood what was happening to me. But when he asked, "Do you understand, Emily?" I nodded and smiled. I wanted to be nice to him. I knew he was trying to help me, and I didn't want to tell him he was wrong.

I was hospitalized for ten days. After my amputation, I felt that Dr. Elliot had betrayed me, particularly when I began to have phantom limb pains. He had told Mom that I would most likely not experience these, because I was so young and might not yet have a conscious sense of my body's contours.

It is generally thought that pain "memories" cause these mysterious but powerful pains. "Body mapping" exists in the brain so that even when a part of the body is removed, the map, or "energy body," remains. Phantom pain results when the brain sends ever more persistent messages to the limbs that have been severed or removed. The nerves are compelled to send messages from the foot to the brain and back. When a part is removed and the communication stops, they continue to transmit a false message. The body searches for the missing part, desperate for it to reappear as if from a dense fog. When the body fails to locate the missing piece, it responds to the perceived emergency by sending signals of intense pain, as if this could call the limbs back home. Pain like the voice of a lost person, alone in the woods, afraid of the dark and screaming.

At first I felt sharp, stabbing sensations at the bottom of my stump, as if the foot were still there but had simply fallen asleep and now had begun to wake up. Later, between dosages of pain medication, it felt as though the left leg were trapped under heavy bricks, possibly under the body cast, which I insisted on referring to as "the brick house." I was starting to worry that I'd end up in one of these plaster houses every year.

The site of the amputation itched and ached, and I could not get to it. "My foot, my foot," I said to Mom, as if she could get it for me as easily as a glass of water or a snack. "Where's my foot?" I asked her, and several times, in my sleep, I shouted simply, "Foot!" as if I had suddenly come upon it like a unique flower or plant in the woods that I had not been expecting to find. The disappearance of a foot seemed impossible, preposterous, although I had been told many times that it was going to happen.

Mom rubbed the air above the sheet where my foot used to be, which helped a bit, as this maintained the illusion that the foot was still physically present and could therefore be touched and soothed. As wounds drained, a small bag next to my waist collected the old blood until the bag was changed.

An essential part of healing and postoperative recovery was physical therapy, which I attended daily, much to my resistance and dismay. When my therapist, Ms. Sharon, put me on the slant board to send blood to the wound and assist in healing and circulation, I screamed and wailed. She was a short, strong woman with extremely soft hands. Her hair was like a curly gray ball on top of her head. She appeared to me then as the oldest woman I'd ever seen or known, and I was afraid of her. Although she was gentle with me, Ms. Sharon did not tolerate my frequent fits of temper; she simply waited for me to finish screaming, and then it was back to work. "C'mon, little girl," she'd say. "You can do it, little button. You have got to do it." When she brought me down off the board, I struck her with my fists. She let me get in a few punches, and then back on the slant board I went.

In the gymnasium were other people with different ailments going through their own torturous physical exercises. The worst to watch were the kids with severe burns who howled as they rode tricycles across the floor. They needed to move and stretch their skin to keep it from tightening, and their therapists pushed them forward when they stopped, urging them on. Down and up I went on the slant board, watching the burn victims ride in painful, screaming circles and adding a few screeches and howls of my own. Our shouts and cries echoed in the gymnasium as if we were kids in a horror house, being forced to watch some terrible, frightening film.

When my anger at Dr. Elliot and the brick house was dulled temporarily by pain medication and total exhaustion from physical therapy sessions, Mom took me for wagon rides up and down the white hospital hallways that smelled like glass cleaner and rubbing alcohol. There were blue lions painted on the ceiling so you had something to look at when you were being wheeled somewhere on your back, which was a lot: to physical therapy, to X-rays, to surgery. You could really only count the lions on wagon rides. When a person was being wheeled anywhere else, the rolling beds always moved too quickly, and the lions' bodies and manes became blue stripes along the white ceiling.

I was placed deliberately in the oncology unit so that I would have a private room and Mom could stay the night on a cot. During my other surgery, she had slept in a straight-backed chair in the orthopedic ward. Colorful drawings by the sick children in the ward covered the walls. I watched bald kids as they walked down the halls, wheeling an IV pole with one hand. They looked like girls and boys who had suddenly aged and lost all their hair, even though their bodies remained small and childlike.

Whenever I saw Dr. Elliot, I threw something at him—a toy, a pillow, a book. Once, before Mom could get hold of me, I overturned my food tray on his lap when he drew a chair up next to the bed to talk to me. I was happy to see him get drenched with milk; a small pile of mashed potatoes stuck to his shirtsleeves, and blobs of green, inedible Jell-O landed on his shoes. "It
hurts,"
I told him.

The phantom limb sensations worsened. The pain was like nothing I had ever known—it was as strange and strong and foreign as a terrified scream in a voice you don't recognize. The ache was painful, yet it was beyond pain: It was the hollow feeling of loss—physical, yes, but a more whole body feeling, as if a cave had been gouged deep in my leg somewhere, and air was blowing—howling—through it. It was like the pain of nostalgia—vague but omnipresent, attached to everything but nothing in particular. The sensation of complete loss.

When the pains came, Mom would rub the "ghost" of my foot for hours. Her dark hair fell into her worried face, and sometimes she hummed songs she'd once used to rock me to sleep: "Count Your Blessings" and "Do Lord." I watched her fingers move through the air above my foot, trying to recapture the spirit and coax back the presence of something that was already gone. I had stopped calling out for the foot—I knew now it was lost for good, even if the nerves continued to transmit false messages of its existence to the brain.

She sang: "When upon life's burdens you are tempest tossed, when you are discouraged thinking all is lost. . ."It was a paradoxical feeling of trying to reattach something while simultaneously trying to set it, once and for all, free. "Count your many blessings, name them one by one. And it will surprise you what the Lord has done. . . ." It was painful. It was impossible. I felt the presence of my lost foot when I wiggled the bottom of my stump as if I were wiggling toes. "Do Lord, oh do Lord, oh do you remember me?"

Misshapen as it was, that foot had been mine, and I had learned to live with it. For example, when Dad carried me on his shoulders, holding me at my ankles, he clasped one foot close to his shoulder, and the other one—the shorter one—he held tightly, close to his cheek, so I wouldn't tip to the side. I was used to wearing my brace on the outside of my clothes; I had learned to stand up and sit down. Just when I had gotten used to it, the body had changed.

I never fully understood the gravity of what was going on or what was at stake during the operations. Nothing at that age seems permanent; a person believes that everything can be fixed. What I knew was that Mom slept in a cot she made up in the morning before the nurses came around; people were nice to me; the baby with cancer whose room was next to mine had wispy, angel-like hair. I liked worrying about her. Cancer was far worse than anything I had or ever would have. I was told it could kill you.