Poster Child (26 page)

"What is it?" I asked.

"Just open it."

After I returned from Geneva, my parents' upcoming move from Denver to Cheyenne had triggered weeks of clearing closets and emptying storage spaces. I was sitting on the floor of the garage, sorting through a stack of Dad's old seminary books, putting aside the Greek lexicon and the Martin Luther biography to take with me to Harvard.

The overstuffed box Dad set before me was bulging at the seams. I opened the flaps. Inside was a mess of artificial limbs heaped on top of one another, with ankles and calves and knees stacked end over end. Metal knees bent stiffly over calves and thighs; the soles of two SACH feet were pressed together; the mess of twisted waist straps resembled coiled snakes. My metal brace hovered over the pile like a tiny seesaw.

"Should we get them out?" Dad asked.

"Why not?" I replied.

"Here's the supplement," Mom said. She handed me four garbage bags; two were full of stump socks I'd used with the wooden legs, their edges frayed and torn; two held old silicone liners that were decorated with strange sweat patterns from long-ago workouts and the occasional sprinkle of bloodstains from wounds now healed, the source of injury forgotten. "I didn't throw any of them out," Mom said. "You never know."

I piled up the liners and the carefully laundered and folded socks. They made three tall, neat piles next to the row of limbs.

"Look at that," Dad said.

"It's amazing to see them all right there, lined up like that," Mom said.

The metal frame of the tiny brace was tarnished, its straps filthy; the white orthopedic shoe was dirty and worn. The whole apparatus looked as if it belonged in a small-town museum that was infrequently visited; a place of moldy-smelling rooms filled with dusty mannequins wearing old fashions, stained embroidered cloths draped over fabric-worn rockers, laceless shoes piled in a corner near rickety baby carriages.

"How the hell did I walk in that awful contraption?" I asked.

"You did all right," Mom said.

The bright orange foot of the first wooden leg was covered in uneven splotches of dirt that looked like a child's muddy fingerprints—probably mine. The bottom of the socket was dusty and scarred from scraping against sidewalks and floors. There was a visible line of uneven stitches where the strap had been repaired with an additional piece of canvas. The metal hinges lined the outside of the socket from top to bottom; the calf was slender, and between it and the foot was a two-inch wood brick. "You grew a lot that year," Mom said.

The next leg was slightly bigger. The socket was wider at the top from weight gain, and the foot was dark with dirt and nearly ruined. A peg had been added on the inside where the socket met the shank to lessen the severity of the clumping sound when the leg swung through, which produced its own muted thumping noise. The peg looked hammered down. "I think we called that one the clunker," Mom said.

"I thought the clunker was a different one," Dad said.

"No, it was that one," Mom replied. "I'm sure of it."

The third leg had at least five inches added at the ankle. The foot had never been screwed on exactly right and looked as if it were sliding away from the leg, as if the additional piece were made of slick mud that had never dried. Mom explained that I had switched feet in the middle of the leg's life. This was the prosthesis I'd been wearing when Brian called me peg leg. I remembered, too, that Andy and I—in a reference to the
Star Wars
movies we loved—had called it "the leg bites back" after we were convinced that a mosquito had died trying to pierce the wood-flesh of the leg.

The next leg was Schmidt's last. The waist strap was more like a harness; the man's-size Seattle foot bore permanent stripes from a pair of black sandals I'd worn to Disney World; the Florida heat had melted the crisscross pattern into the foot, making the rubber toes look diseased. The front of the socket looked bumpy, like bad papier-mâché. "I remember he kept making the socket tighter and looser," I said.

"That was not a good day," Dad said. "I remember feeling really pissed off at Schmidt."

The next leg was the tallest and slimmest yet, the socket curved to match my expanding hips; the ankle was thin and sculpted. This was Larry's first leg. The leather patch at the back of the thigh was added to keep me from sliding out of my desk chair at school.

I switched back from the Seattle to the SACH foot for the next leg so I could wear different shoes—Mom and I called them "girly shoes"—that were made for slender feet. This leg was the first that took on a true womanly shape. I had grown at least three inches, and the thigh was markedly curvier than the others. I had gotten a new foot at some point, and the seam between the foot and the ankle was plastered over in a different shade of paint.

The next leg was the one I had worn when I resolved to be as thin as possible. It had taken me through hours of grueling aerobics in high school and college. The frayed waist strap was practically destroyed from arduous, sweaty workouts; there were messy holes I had burrowed in the strap as I quickly lost weight. This was the leg I had tossed off the top of my loft during the first year of college, the one Liz and I had nicknamed "Creaky Malone" for the cracking sounds in the knee joint when the Minnesota winter temperatures dropped below zero. This was the leg I had been so happy to discard when I got my first hydraulic prosthesis.

Out of place, at the end of the row, was the leg with the failed suction socket; the one that made the farting noises, the one in which I had placed so much hope. What was intended to be the suction mechanism looked like a doll's painted eye covered with a patch of skin. I had painted the foot's toenails; since I couldn't wear it, I clearly hadn't been worried about getting tired of the color.

"I can't believe I actually wore these," I said. "They're so ugly!"

"Well," Mom said, picking up the legs one by one and setting a blanket under the feet so they wouldn't rest directly against the concrete and get even more dirty. "That's why you're such a spoiled little shit. I took one look at those and felt sorry for you."

"Thanks, I think," I said.

"Oh, I'm joking," she said, standing up. She bumped my hip with hers. "Sort of."

"Should we leave them up?" Dad asked. I nodded.

After my parents left the garage, I looked at the legs again, one by one. Individually, they looked strange to the point of being comical, but gathered together like this, they were not so ugly but instead had an idiosyncratic, brutal, and unassuming beauty that also told a larger story.

Since I received my first wooden leg in 1978, the prosthetic industry has changed dramatically, with advances in technology and design that were unimaginable even a decade ago. Now there are sleek, well-designed Web sites that advertise the precise benefits of specific feet, knees, and other prosthetic components. I am suddenly a valued customer, treated politely by prosthetic companies that actively compete for my business. This is a far cry from the days when a young female amputee had to wear a man's prosthetic foot if she wanted the latest design.

Articles about souped-up prosthetics appear in national newspapers. There are new technological developments all the time, new legs and knees, some of them phenomenally expensive and outside the realm of possibility for many amputees, with or without insurance. The microprocessor knee (about $35,000), or "C-leg," features a computerized device that learns the parameters of your gait; if you sway to the side, the knee automatically corrects your movement and keeps you from falling. As my prosthetist, Nick, has heard from his clients who wear it, "It's as if you don't have to think about walking at all." This development is so astounding to me, it is almost unbelievable. There continue to be different types of Flex-Feet developed for varying activity levels; there are feet equipped with shock absorption and rotation capabilities. Elite disabled athletes are continually confounding our notions of what a body can do. A leg at the high end of technology—complete with external silicone spray that closely resembles human skin (and is particularly marketed to women)—costs about $50,000, double the price of my current leg.

Liner technology has advanced as well. While my first leg featured a cloth sock and a simple wooden socket with a waist strap as a method of suspension, I now wear a full contact leg, featuring a hybrid suction socket that makes the most of the residual limb's end-bearing capabilities. Owing to the shape of my stump, which has always been an issue in a good prosthetic fit, I wear a custom-made silicone liner, which is more expensive than injected silicone. On the wall in the back room at the prosthetist's office where liner molds are kept for easy reference, my long, thin mold juts out alongside other rounder, shorter molds. "Your shape is unique," Nick explained. "It narrows so dramatically from hip to tip." Once the liners begin to fray from the sweat of exercise and the pressure and friction of movement, they are less durable and functional, apart from smelling absolutely horrible. Nick tells me that in light of current developments, I may soon be able to wear a new injected silicone socket, reducing the cost of my leg and improving its overall capabilities.

Now, when I visit Web sites of major prosthetic manufacturers, it's as if amputees can change their bodies—and their identities—as easily as snapping on a new running foot, a new knee, a newly designed cosmetic cover, or a state-of-the-art ankle. In Internet chat rooms and on national and international Listservs, amputees discuss their needs and desires, they talk freely and excitedly about what they want to do. You want to run, sprint, leap, pole-vault, windsurf, or swim? You want to run a marathon or compete in a triathlon? Want to golf or just walk comfortably? Somebody makes a part or a combination of parts that will enable an amputee to do so. Many of these parts have sleek and enticing names: The Cheetah foot is custom-made for track sprinting; the Elite foot claims to be the best bet for vertical shock capabilities; the Rheo Knee promises to let amputees "walk your way" and analyzes gait, automatically adjusting resistance. I recently ordered a waist belt called the Gunslinger Waist Power Belt. Like a girdle, it holds the leg at the top and enables me to run longer distances with greater comfort. The body can literally become a wonder of technology and engineering. If you have enough money, the right insurance plan, or the appropriate athletic sponsors, the possibilities seem endless.

But here, in my parents' garage and assembled before me now, was the physical history of
my
body—individual, imperfect, and unique. The hydraulic prosthesis I was wearing had taken me all over Europe and Asia. This leg had been with me during my college graduation and my first sexual experience; it had witnessed my moment of truth telling in Geneva. These legs had borne my body through train trips, plane rides, and countless other encounters. Unlike my washable skin or the inevitable fading of some memories, they still bore the marks of these journeys. Here were the moments of my life laid out before me—embodied—in wood and canvas and plastic and metal. Touchstones for a history.

I visited the legs every day, sometimes twice a day. I liked looking at them set out before me against the garage wall. Each time I looked at them, I remembered a story or a memory.

How did that get there?
I wondered, noticing a new scrape or mark I hadn't seen before.
When did that change?
I thought, looking at a chunk that was missing from one of the heels. When I asked my parents, our stories often differed. "Was that when I crashed my bike in the high school parking lot?" I'd ask, bringing them to the garage and pointing out a deep groove, like a rut, near the hinges of the second leg.

"No, you fell off the swing set," Dad said. "I remember."

"No, she fell out of the tree in the backyard," Mom said. "That's what happened."

"Well, which was it?" I asked. They shrugged.

What was the real story? Nobody seemed to know. It was strange that after a lifetime of scrutinizing the body, when faced with its history, there were still things about it that I did not know; there were facts that failed to add up.

"You need to box up those legs tonight," Mom said. The move to our new home was imminent. "The truck is coming tomorrow."

"Ready?" Dad asked, a roll of packing tape in his hand. Mom walked in with a new moving box that she'd carefully labeled in black marker "Emily's Legs."

"I padded the inside with a quilt," she said.

But I wasn't quite ready to put them away. "I'll do it in the morning," I said.

"Well, do it before eight," Mom said, and left the box at the end of the row.

Only one person knew my body better than I did. I called Dr. Elliot the next day He quickly returned my call, and without any of my medical records before him, he specifically recalled certain details of my body and my particular PFFD case. I was surprised and moved by this instant recall. I may have been willfully oblivious, but there had been someone who had always known what was going on with me, who knew me, I would discover, literally inside out. My life and my body had been in his hands many times.

I asked Dr. Elliot questions about my different operations. I asked him to clarify when they were performed and to explain what each procedure was supposed to do.

"And is it true," I asked finally, with all the other facts carefully noted down, "that we don't know how or why PFFD occurs?"

"We don't know why, but we do know that it is a defect in the DNA when the body is formed."