Poster Child (8 page)

And I didn't feel handicapped. I have a vivid memory of watching a line of students move down the dark hallway to their separate room. They were the "special education" students—the "less than" students, as some kids called them—and they were always hidden away, shuffled out of sight, and forbidden to be a part of the regular classroom. I stood there in my body cast with my iron pipe walker, feeling grateful that I was not handicapped as those poor kids were.

In 1981, in addition to being the poster child and wearing the body cast for part of the year, I enjoyed singing in the choir at church, became a Camp Fire Girls Bluebird, loved to read and memorize stories and poems, and adored first grade. This, according to the family Christmas letter. "Throughout all this," Mom and Dad wrote, "Emily has been a real trooper."

I liked being described as a trooper. I saw myself as strong, able, and special because I could withstand situations other people assured me were extraordinary.

"How do you get around so well? How do you do it?" people would ask.

"I just do it," I chirped back, but inside I knew it was because I was amazing and brave. How else could I have survived all those operations and still be such a happy little girl? The word "disabled" rarely crossed my mind.

As a result of all the attention and the March of Dimes publicity, I was very proud of being singled out for having a fake leg. It was almost as if being recognized for having a disability made me feel somehow normal. As if the fact of people paying greater attention to the leg made it seem less like an insidious flaw and more like a conversation starter, a special attribute, or a sign of grace bestowed upon me and me alone. While I was the poster child, the word "disability" seemed to have little to do with my different body and much more to do with the way I was treated like a princess. The word felt like a description that conferred a kind of status, the way the word "beautiful" or "brilliant" might. I felt special, interesting, extraordinary, and
better
than the average girl. My disability brought me attention; it brought me friends, and most of all, I thought, it brought me love.

I was proud of my disability when it afforded admiration and attention, but when it required that I ask for help, I felt ashamed. While I was growing up, my severe nearsightedness felt just as limiting as my artificial leg, if not more so. As myopia was something I shared with other kids, it didn't attract special attention, either, and this was another mark against it. My leg was fun; at summer camp, after I discovered a big ant in the socket one morning, I had a crowd of girls watching me after wake-up call, waiting eagerly to see what I might find.

One night at camp I woke up, dying to pee. I reached out to the floor near my bottom bunk and couldn't find my glasses. I couldn't see well enough to go anywhere. Just before I woke my counselor to ask for help, I stopped myself. My leg was cool and set me apart—everyone was amazed by the amount of physical things I could do in it—but being unable to see and walk at the same time seemed debilitating and therefore embarrassing. I thought of myself as the poster child, as the girl whose smiling face was plastered on posters around town. Blindness called forth images of people with black sunglasses, people who used canes or their hands to search for their way. This was the first image that sprang to mind—in addition to the Bible verse about "the blind leading the blind." In a moment of panic, I went with the most convenient, accepted description of blind people: I saw them as helpless.

I groped everywhere, searching for my glasses, able to see shapes but no colors. My search was unsuccessful, and I finally peed in my sleeping bag. In the morning, I found my glasses far under the bunk, pressed against the cabin wall. Too ashamed to admit what had happened, I rolled up the bag during the day to mask the smell and slept in it all week.

My parents, both with excellent vision throughout their lives, had two kids who cried before reading the distance chart, knowing that our glasses would get thicker and heavier when we couldn't identify the numbers and letters correctly. Andy began wearing glasses at age four, and I got my first pair at age six. Our vision worsened quickly as we aged.

To compensate for our poor vision, we developed excellent hearing. We heard whispered words between our parents in the front seat of the car: discussions about birthday presents or other things we weren't supposed to hear. Both of us could make out bits of conversations at dinner parties by pressing one ear to the floor above the living room, where the adults sat for dessert after dinner. We were like bats, we said. Bat-kids. We had contests about who could hear the best. Andy—whose eyesight was worse than mine—always won.

When he was ten years old, Andy discovered that he could not see at night. He'd been on a Boy Scout camping trip and was somehow separated from the others during a hike. He wandered for a while, confused and afraid as the sun went down. He spent hours sitting in darkness, shivering with cold and fear, until he was found.

"I just couldn't see anything," he told us. The lenses in his glasses looked thick as crystal tumblers; they made his eyes look huge and were so heavy, they constantly crept down his nose.

The autumn after the camp episode, Andy was sent to Dr. Leland, an ophthalmologist in Cheyenne; he was a thin, friendly man with slight, sloping shoulders and short tufts of gray hair over his ears.

Mom, Dad, and I sat in the waiting room as Andy had the Humphrey field test to determine if he was in fact going blind. He has never seen, and never will see, stars.

For once, the situation of potential physical danger was reversed. How many times, I found myself wondering for the first time, had Andy been stranded in a waiting room like this one, stuck with a pile of crappy magazines and the prospect of hours spent waiting, with no possible means of escape or relief? It wasn't just prosthetic fittings, but trips to the hospital, trips to the physical therapist, and trips to the eye doctor for both of us. When I had surgery, it was literally weeks of sitting around with an unhappy sister in a series of sterile hospital rooms, surrounded by sick people and anxious parents, well-wishers who would come in the room to visit me and never him.

I was fresh from my own intensive examination, which was something I dreaded all year. All parts of my body above the waist were extremely sensitive to intrusion. I was known for my furious blinking, and it took ages to get the eyedrops in. After so many surgeries, I felt that anything from the waist up should be decidedly off limits.

Once a year at my appointment, Dr. Leland got out a light that was so enormous and bright, it looked like something you'd use to explore a cave that was particularly deep and dark. He held my eyelid open and peered deeply into my eye until all I could see were thin red lines snaking away in all directions, the way hiking trails were traced on maps we used during summers in the Rocky Mountains. I felt as though Dr. Leland were trying to blind me; in the meantime, Andy's tests were meant to determine exactly that.

"I'm the one who might go
blind,"
he had said before his test.

I remembered my own moment of panic at camp and the image of the blind person that I had been so reluctant to be associated with. "No, you won't," I said as he left the room with a nurse.

Are you afraid?
I wanted to ask, and also,
What am I supposed to do
while I wait?

It was intolerable to watch my parents fidget while they waited for Andy's test results. I now had an idea of what they did while I was in surgery, something I had never seriously thought about before. Dad tapped the wooden armrest of the waiting room chair and leaned back and forth over his knees, sighing, biting his lip, rubbing his hands together. Mom sat next to him with her legs crossed, flipping through a magazine so quickly that I knew she wasn't even attempting to read it. How did Andy stand it? After a few minutes of watching this, I simply couldn't bear it any longer. I stood up and said I was going outside.

I sat on a bench under a tree outside the office for the next thirty minutes, and nobody came to get me. After a while, I took off the square plastic glasses designed to protect the eyes after dilation. The air was cool, and the light was fading quickly.

I wondered:
What if Andy really went blind and became the poster
child?
The idea of this repulsed me, which was a surprise; why such a reaction, when I was so proud of the status that the March of Dimes had afforded me? I imagined Andy beating the floor with a cane, searching for a curb or a door. It had never occurred to me that a blind girl or boy might be chosen as the poster child. When I thought of disability, I thought only of my leg and the attention I received for being different. As I imagined my brother as disabled, for once getting outside of myself, I realized something: I would pity him, and that meant people pitied me; I was not so special after all. Could it be possible that hidden in people's compliments was revulsion, even disgust? As soon as I had the thought—maybe being the poster child was not so terrific—I pushed it aside. Of course it was, I thought. I reminded myself that I had been
chosen.
I was special; my picture appeared in the paper all the time.

When I finally returned to the office, there was Andy, looking dazed and silly with his dilation glasses on. His hair was rumpled and stuck up on top of his head in a peak. There were sweat stains under his chubby arms. He would not go blind, at least not yet. But he would have to come back and have this same test every year for the rest of his life.

"Where are
your
glasses?" he said. "You have to wear them after your eyes get drops."

"Right here," I said, and put them on. I didn't need them anymore, but I wore them until he took his off.

As I fell asleep in the backseat on the drive home, I realized how terrible Andy must have felt all these years, waiting for me in cold, sterile rooms or in the homes of people who were probably inordinately, strangely nice to him. This new knowledge, rather than make me more tolerant of him and appreciative of his patience, enraged me.
How dare he make me feel guilty? How dare he be so kind?
How would I ever repay his fierce desire to be good, to help? Sometimes I was not even this charitable but simply resented that he might have a problem that would usurp mine and take away the attention I had claimed from my parents since the day I was born. Still, I wanted to tell him now that I knew how he felt. Did he think he knew how I felt? Did it matter? These were the thoughts that occupied my mind as I drifted off to sleep.

I woke up when we were right outside the Laramie city limits. Out the car's window, I watched a train rattling over the tracks. The long black cars were like dark stitches sewing up the land. The conductor blew the whistle: a sweet, hollow, lonesome sound. There was something proud and human in the noise that took away its desperation on this chilly night. It suggested to me that life was worth getting on with: Trains kept moving, new nights fell, parents drove their kids home in the dark, with everybody inside healthy for the moment. There was the knowledge that other people, tucked in their beds or riding in cars, heard the same note as the train crossed its wide territory and that somewhere, inside a lit and heated home, someone else was listening, too. It was the sound of the cold when all you know is warmth and all you hear is a single note rippling heavily over the flat, dusty plains.

My father was not the first "Reverend" listed in the Laramie phone book, but he always seemed to be the only one at home. People heading through town on Interstate 80 who needed food, money, or solace used to look up our telephone number or just show up at the house on Mitchell Street. Dad or Mom might offer them a meal or a shower, maybe some money for gas or food. I might be instructed to put clean, folded towels in the bathroom while the visitor had a cup of coffee in the kitchen. Sometimes the phone rang in the middle of the night, and I heard Dad's Volkswagen Bug revving up in the garage, headed somewhere.

We referred to these people who appeared at our door asking for help as "transients." "They're on their way from one place to another, and they landed here in between," Dad explained. Their coats often looked dirty and battered, with the cheap filling sticking out in white tufts; their hair might be greasy and smell of car exhaust; sometimes there would be an old car running noisily in the driveway with the faces of children peering through the windows.

If Dad was at church, Mom answered the door to a man or woman who stood awkwardly on the landing between the first and second floors, in front of the hall tree that was loaded with coats, hats, and scarves. Often a child was sent to the door to ask for money or food while the parents waited in the car or on the street corner. Andy and I were instructed to stay put, so we huddled at the top of the stairs, peering down. I remember one man held his hat in front of him as if he were paying his respects at a funeral.

"How come those people end up like that?" I asked Mom once when she came back upstairs. "Why are they so poor?" She opened her purse and pulled out a ten-dollar bill.

"That's a lot of money!" I whined.

"Be still," she said, and returned to the front door. Her curled hair was flat at the back of her head; she'd been sitting on the couch watching television with Andy and me. She passed the money across the doorway. A male hand thrust out, and she shook it, nodded awkwardly, and said, "Good-bye," in a strange, stiff voice.

"Brrr," she said, pulling an afghan tighter around her slim shoulders. Before she shut the door, the lights from the car illuminated her pale face for just a moment.