Poster Child (18 page)

Chapter Ten

GUARDIAN

"Emma, hand it here." Liz, my first-year roommate at St. Olaf College, stood near my loft bed, and I placed my artificial leg in her outstretched arms. Gently, she lowered it to the floor and leaned it against my desk. She tucked the waist strap into the socket. "There," she said, hoisting herself up into her bed on the other side of the room. "Sometimes I just can't stand to watch you throw it around."

I had developed a system for sleeping in the loft. Once I had climbed the ladder, I removed my leg and dangled it over the side of the bed by its waist strap, as if I were slowly lowering a fishing line into the water. I got it as close to the floor as possible before dropping it the rest of the way. The knee automatically buckled, and the leg crashed to the floor. Sometimes it hit the desk underneath the loft with a crack and a thump.

I felt self-conscious just before I did this for the first time, so lying in my bed, I told Liz a story that had always made people laugh. I hoped that humor would mitigate any nervousness she might experience as a fake leg careened off the side of her roommate's bed.

The story was this: When I was a junior in high school, I ran for thespian state board, the student governing body that planned events for high school theater clubs across Nebraska. Each candidate had to give a speech before the convention voted. My friend Nancy's boyfriend, Gabe, walked out with me onstage in front of the assembled group. We held hands. I wore a long black cotton skirt, a tie-dyed tube top, three or four tarnished crosses from a pawnshop around my neck, and green Converse sneakers. I said, "I'd give my left leg to be on the thespian board." With shaking hands, I unbuckled the waist strap through the skirt's thin fabric and let the prosthesis tumble to the ground. Gabe picked me up in his arms and whisked me off the stage as Nancy ran out to retrieve the leg, hoisting it up like a torch as she ran backstage. The crowd roared their approval, and I won the election.

But Liz didn't laugh. Instead, she sat up on her elbows and looked at me. "Man, that story makes me a little sad," she said.

"Why?" I asked, slightly annoyed. "It's funny."

"Yeah, but I don't know, the leg's a part of you. I like it."

"It's not exactly its own person," I said.
What do you know about
it, anyway?
I thought.
You don't have to wear it.

"Yeah, but it's part of
you,
and
you're a
person." She flopped down on her bed. "And you're
my
roommate," she said.
"And . .
."

"And?" I asked, smiling now.

"And you're way too hard on yourself."

I didn't need to make Liz laugh in order for her to accept me—she already did.

I
was
hard on myself. Liz and I were kindred spirits from the start: We took college seriously; we didn't hate our parents; we were virgins; and neither of us had ever been drunk before we were drunk together, although Liz, like me, had had plenty of opportunities at her own high school keggers in small-town Wisconsin. We had nicknames for each other—"Emma" and "Lizzy"—and our conversations and interactions were tender, intimate, and supportive. We ate every meal together, wrote letters to each other over school breaks, and when we both got sick that first semester, we ate soup and saltines and reassured each other that missing a few classes would not precipitate a steady decline into flunking out of school. Liz kept me sane those first years in college; without her, I would have drowned myself under my own pressures to be perfect. She provided levity as well as a levelheaded analysis to situations that I reacted to with raw, unguarded emotions.

Our floor had group showers, and this caused me great anxiety. Worried that I might fall and hurt myself by hopping around on a wet floor, Mom had always insisted that I take baths. "What if you fall in the shower?" she asked. "Then what?" I had started taking showers in high school to spite her, to scare her, and when I arrived at St. Olaf, I was glad I had because there was no other option. Mom's words stayed with me, though. What if I fell and broke my neck in a group shower while a freshman in college?

I took spit baths late at night in the bathroom sinks for the first few days, but it was clearly not a good system. "I'm scared of the showers," I admitted to Liz as we lay in the dark in our bunks, listening to Bach on the stereo. She immediately suggested that we shower together. The next morning, wearing my waterproof shower shoes, I walked to one of the wall spigots, took off the leg, and handed it to Liz; silently, she leaned it against the wall where we hung our robes, ensuring that it would not get wet. Only after the leg was out of sight, Liz had returned, and we had turned on the shower taps did we begin to talk, as if the ritual of disassembly required respectful silence. She got out first, toweled off, and brought my leg to me just as my cousins had done years ago at the public pool. Our new ritual. Pretty soon, others were volunteering for this job. So with the women on my floor I felt—and was—safe.

The rest of campus felt wholly unsafe—a hormonal miasma of insecurity and competition. The coed, nonalcoholic "mixers" Liz and I attended were especially nerve-racking, as it was appearance in these circumstances that seemed to matter most, and I needed to prove that I was desirable; I had convinced myself that success in life hinged entirely on this fact. My only future vision for happiness involved marriage and children. I felt this was what was expected of me, and it was what I expected of myself as well.

Although I admitted this to nobody, I had come to college intent on finding a husband. I thought that by clinging to traditional values regarding relationships, I could be more confident of my acceptance into "normal" society. What was a disabled woman on her own going to do without someone to care for her? I had an image of a horrible future in which I was a crippled old woman, alone, being taunted by boys as I limped my way to the supermarket pulling a plaid grocery cart. Someone else would need to make me acceptable by wanting me and thus providing the proof that I could be desired, even in my deformed state.

As Liz and I were walking back to our room after these parties, which I spent hours trussing up for, I'd routinely ask her, "Do you think I was as pretty as all those other girls?"

"Yep," she replied. "You're you, right? Seriously, you're making me nuts."

"Yeah, you're right," I said. "Sorry. I'm sorry to be annoying." But I needed her reassurance.

"So, you would notice me if you were a guy, right?" I pressed.

"You're beautiful and wonderful," she said, knowing what I wanted to hear, but I detected the increased annoyance in her voice and stopped pestering her, at least for now. "Plus," she said, "none of those guys seemed that interesting."

"You're so right," I said, although I hadn't even noticed. I never thought I'd be in a position to choose. What mattered was that they were boys and that one of them might choose me.

While I waited to find my fairy-tale suitor, the rest of my energy in college went toward being as perfect as possible, just as it had in high school. Overachievement was the method by which I organized my life. I carefully recorded everything I ate (I had memorized calorie counts long ago) and worked out daily and excessively on the school's lone StairMaster that was planted in the entrance hall of the cavernous gymnasium. I read every page that was assigned to me and wrote my papers weeks ahead of time in order to revise them at least three times by hand before typing them up in the computer lab.

While many of my friends slept in on the weekends, I was usually in a study room by eight A.M., actually studying. I did not take naps. I did not skip class or ask for extensions on projects or papers. I watched television on Saturday nights for exactly one hour, making exceptions only for events like Bill Clinton's election and Tonya Harding's unsuccessful medal bid at the Olympics. My days were carefully constructed, as if deviating from these scripted activities one bit would mean total failure in all other areas. I went to bed most nights at ten o'clock, partly out of exhaustion and partly out of concern that if I stayed up any later, I would get hungry and start snacking.

Between my junior and senior years in high school, I dropped fifteen pounds in less than three weeks, going from 120 to 105, then 105 to 100 over the next few months, and then dipping even lower to 98 pounds by graduation; at 5' 7", I was disastrously underweight. When a doctor commented on my rapid weight loss at my yearly exam, I said, "Well, you know what they say about a hollow leg, only this time it's true." He found this so funny that he repeated my joke to the nurses as I left the office, my stomach rumbling.

My typical schedule, food included, at the age of seventeen: Wake up: one hundred sit-ups. Breakfast: dry toast and Diet Pepsi. History, PE, study hall, trigonometry. Lunch: salad with no dressing; one piece of fruit. English, theater, yearbook, free period in which I drove home and slept for an hour. Aerobics. Three hundred jumping jacks. Two hundred sit-ups. Dinner: one piece of broiled, skinless chicken. Homework. Bed. Meticulously I recorded the events of each day, calorie count first.

I have never received as many compliments about my appearance as I did when I stopped menstruating and became monstrously thin. "You look great!" "Look at your cheekbones!" "How did your ass get so small?" And this, the best one: "You have the perfect body." These testaments to what I saw as my superiority in willpower and self-denial were narcotic and strangely sustaining when little else in my life was: not academics, which were not challenging at all; not music, which I had once loved; not religion, which had once given me comfort.

I felt unencumbered, as if I were floating through life like a thin-skinned, delicate doll. I did the classic anorexic ritual of "body checks": compulsively wrapping my fingers around my wrist to be sure I hadn't gained weight; circling my stump with my hands; tugging at the waistband of my jeans to be sure they were as loose as they had been the day before. I took approximately twenty minutes to eat one tortilla chip. I proudly bore a new hole in my leg's waist strap with a screwdriver to accommodate my weight loss. I had reduced my life to a sequence of simple, specific needs that rotated around bird-size amounts of food and copious amounts of exercise. Weirdly, the expansion I felt as a skier was not dissimilar to the feeling I experienced while starving myself: In both situations, I felt sleek, compact, contained, and, strangest of all—at least in the second scenario, when I was barely able to drag myself through the day—able.

Mom took me to several doctors, but I was always just above the weight limit to be classified as anorexic or hospitalized. "She's very thin," they'd tell her, "but she's not anorexic."

"I told you," I'd say to Mom after these appointments. "I look good like this."

"No, you don't," she said, "and I have my eye on you, young lady."

So did Dad. "Write down the three square meals you ate today," he said every night after dinner, and I wrote out a list of lies, making up a healthy lunch and not mentioning that I'd tossed the heavily buttered toast he'd made me for breakfast in the trash.

He and Mom looked over what I'd written. "Good," Dad said. "Remember: three squares." Without an official diagnosis, there was little my parents could do. Mom broiled my measly, fat-free chicken breasts because I would eat them, although I ignored most starches and all desserts. Sometimes I splurged with a vegetable like summer squash or creamed corn that wasn't in my self-designed "program."

In college, as I tried to maintain an abstemious lifestyle, I placed some parts of the body under constant scrutiny—examining every dimple of fat on my right thigh and every small bit of flab under my impossibly skinny arms—but neglected the artificial leg or what was within it. When I showered or slipped into my prosthesis, I kept my eyes elsewhere; once the stump was freed for the night, it went straight under the covers. I couldn't control the fact of one leg, but when I refused to give it what it needed, my body responded the way any teenage girl's would: It got smaller, it stopped bleeding. In short, it obeyed me. I began to question this strategy of living only after I met Samantha, another disabled woman my age, also born with PFFD, whom I met through Lutheran church connections.

Samantha was involved in competitive disabled sports. She had half a dozen legs—one with a suction socket that appeared to be what Mom and I had once referred to as "the Texas leg"—and many others that looked strange and wonderful to me. I was amazed by her "gear," as she called it, and remembered the way I had mythologized the Texas leg, as if possessing it would change my life. I remembered pressuring Vince and challenging him when the leg didn't fit right. Now here it was—strap-free and leaning against the wall in my new friend's closet.

Samantha was beautiful and smart; she could run and windsurf and swim; she wore high heels using a special foot that adjusted to the shoe's heel height; she was from New York City, a place I had dreamed of going but had never been; her "walking" leg was not wooden but soft and flesh colored. Finally, none of her legs used the detestable waist strap that had plagued me for years and given me rashes, sores, and other headaches; it frayed and smelled bad and created weird bumps in my butt and hips when I walked. Next to Samantha, in my clunky wooden limb, I felt like a dilapidated robot.

Samantha's legs were built on advanced technology, not on outdated models that had been developed for war veterans decades before. She moved well and with confidence and was not afraid to wear shorts or skirts. "Who cares if people stare?" she said. I felt elated whenever I spent time with her; I was encouraged to know that there were other ways of living. Her concerns were not about being thin or "perfect." Instead, she wanted to be strong, sexy, and athletic. My new friend was practically a celebrity in my eyes.