Autobiography of a Face (21 page)

By the end of my freshman year I'd gained a reputation as one of the better poets on campus, which aided the development of my artistic persona. How trivial to actually
think
about ones appearance. The attire of my fellow scruffy artists told the world to recognize them as geniuses too preoccupied to care about anything as mundane as clothes. But for me, dressing as if I didn't care was an attempt not to care, to show the world I wasn't concerned with what it thought of my face. In my carefully orchestrated shabbiness, I was hoping to beat the world to the finish line by showing that I already knew I was ugly. Still, all the while, I was secretly hoping that in the process some potential lover might accidentally notice I was wearing my private but beautiful heart on my stained and fraying sleeve.

 

In truth there was little danger of meeting someone who might actually desire me, and not just because of my looks. The female-to-male ratio at school was three to one, and much of the male third of the population was, for varying reasons, unavailable. I was free to develop my eccentric ways and thoughts without any threat to my most basic assumptions about myself, my most intimate definitions of what constituted my personality, however painful those definitions may otherwise have been.

The next summer I was looking forward to a second free-flap operation, but it wasn't to be. My mother had to leave her job at the nursing home, which meant I no longer had medical insurance. And to ease her financial burden, she had decided to sell the house, which required a great deal of repairs and general sorting out. After weeks of filling out forms and spending hours on the telephone on hold, I eventually received Medicaid. I went to see Dr. Baker, and together we decided to postpone surgery until the following summer.

The house was sold early in the fall of my sophomore year. For years our poor old dilapidated house had been nothing but an embarrassment, and I'd underestimated its value as a reliable source of comfort, as a place I could always go. Now, to my surprise, I missed it. I experienced a strange kind of orphanhood, a displacement that worked its way into my writing. The word
home kept
cropping up in my poems. When school vacations came around, I'd often spend them as the guest of friends instead of at my mother's new, smaller apartment.

In sharp contrast to high school, I now possessed a large number of varied and decidedly wonderful friends, whom I valued immeasurably. Through them I discovered what it was to love people. There was an art to it, I discovered, which was not really all that different from the love that is necessary in the making of art. It required the effort of always seeing them for themselves and not as I wished them to be, of always striving to see the truth of them.

My vanity allowed me to be proud of my many different types of friends. I was on equally good terms with politically radical and openly hedonistic people, friends who were concerned deeply with the spiritual and those who could not care less about it. Generally, they didn't mix with each other, and often one would be sincerely surprised to discover that I spent time outside of his or her particular group, though most shared the quality of being on the fringe. To be on the fringe at a school as fringy as Sarah Lawrence was itself an accomplishment, but it was this very quality that I loved most about my friends. They wore their mantles as "outsiders" with pride, whether because of their politics, their sexuality, or anything else that makes a person feel outside of the norm. Their self-definition was the very thing that put me at ease with them. I didn't feel judged. I felt acceptance I had never experienced before and was able to genuinely open myself to the love they offered.

 

As sophomore year drew to a close, I went to see Dr. Baker about setting up the next operation. I was full of hope, but as it turned out, Dr. Baker had far too much work right then to do the operation himself. He was handing me over to a team of two surgeons at St. Vincent's Hospital, down in Greenwich Village. As I waited in Dr. Baker's office, these two new doctors walked in, examined me, and left. Dr. Baker assured me that they were very capable.

Free-flap operations are six to eight hours long, and I felt that I
should be
understanding of how much of Dr. Baker's time it would take, that I should just go along and let these strange doctors take over. "I'm still your doctor," he assured me, but I felt completely cowed, as if I didn't have the right to speak up and voice my fears. I wanted to know if this change had anything to do with my being on Medicaid now, but I felt too abashed to ask.

Things went badly right from the start. I went into St. Vincent's in the middle of a heat wave, and the air conditioning in my room, with its permanently shut windows, was broken. I woke up after the operation in a sweat. Still delirious and in intense pain, I pulled off the stiff sheets to see that rather than the normal line of stitches I had expected along my hip, where they'd taken the graft, there was a long row of thirty or forty large metal staples. It looked as if someone had sawed my leg off and then put it back on with an office stapler. That sight upset me, but when I tried to speak, I found they'd given me a tracheotomy, another surprise.

Coming out of eight hours of anesthesia takes a long, unpleasant time. I kept surfacing into consciousness, taking note of one detail, such as the staples, then sinking back down again, only to reemerge a while later with no sense of how much time had passed, where I was, what on earth was happening. I couldn't understand why I had staples in my leg, and I was never coherent enough or conscious long enough to figure it out, to learn that it was simply an experiment in wound closure. I kept hallucinating gruesome scenes in which nurses were attacking me with pliers. My whole body kept shaking, and I found I could not stop crying, even though it did not feel as if I was the one crying: I was watching a movie of someone else lying in a bed, trembling and crying. I felt like a small child. I didn't feel safe.

At some point in the night I found it difficult to breathe. I wrote out a note to the nurse, who said she would tell the doctor. An hour later it was worse; I had to think about every breath. I wrote another note to the nurse, and finally a doctor arrived to draw an arterial blood sample to check my oxygen level. A long time went by. It was still dark, and there didn't seem to be any people around. I was frightened. When the doctor returned and started taking another blood sample, I was only dimly aware of him. I couldn't see very clearly, and his voice sounded muffled as he said hello to another doctor, who walked in and asked, "Didn't you just do a blood gas a little while ago?" I could hear them talking as if through water. "Yeah," he replied congenially, "but I didn't believe anyone's oxygen level could be that low." However unable I was to communicate with the outside world, this comment jolted my inside voice awake. Oh my God, I thought to myself, brain damage-I'm going to have brain damage, I'm going to be brain-dead, and as far as I could tell, no one seemed to care very much.

I lay in bed and focused on someone's hand resting on the end rail of my bed. Several people were having a conversation about what to do with me, but I couldn't concentrate on it. All I could think about was how cinematic this pale hand looked, resting there on its wrist and gracefully, limply, letting its fingers point toward the sheets. Sometimes it would twitch up, even turn its palm upward a little, as a hand would do when its owner was making a point. Then it was lifted up and taken away, and someone stepped up next to me and leaned down to tell me they were going to take me to Intensive Care, that I was going to be put on a respirator.

Now this, I thought, sounds like an excellent idea. Finally I'll be able to breathe. My few belongings were taken out of the bedside cabinet, put into a plastic bag, and plopped on the bed near my feet. The brakes were lifted off the bed's wheels, and off we went, me in a bed pushed by a nurse and a student doctor. The hospital seemed deserted, and we got lost twice, the nurse and student doctor arguing about which hallway to go down, blaming each other like an old married couple. Knowing there was a respirator in my future, I was a bit more relaxed and could see some comic aspects to my predicament.

After I was finally put on the respirator, it was discovered that I had pneumonia. I spent a hellish week in Intensive Care, where the lights were on twenty-four hours a day, the air conditioning was still broken, and every once in a while the alarm on my heart monitor would go off for no apparent reason. It was very loud and always jolted me right off the sheets. I had to wait for someone to come give it a whack, like a malfunctioning television, before it would stop.

The oddest part, though, was that everyone seemed to be speaking very peculiarly to me. I couldn't put my finger on what was so bizarre about their speech (was I on some strange drug?). Finally a male nurse I'd never seen before asked, very slowly and with ovetexaggerared movements of his mouth, "How long did it take you to learn lip reading?" For some inexplicable reason, they thought I was deaf. Later that day a crew of workmen started ripping down a wall a few feet from the foot of my bed in order to fix some pipes. Their jackhammers made my metal bed rails jingle and set my heart monitor off again.

 

While in the hospital I had been so ill that I hadn't put much effort into thinking about my appearance. My mother had been given the use of an apartment on the Upper East Side for the summer, and afterward I went to stay with her. One whole living room wall was covered with mirrors. I walked into the apartment and almost fainted at the sight of me. The graft had been applied not to just one side of my face but from one ear to the next and was obscenely swollen to the size of a football. A very large piece of pale skin from my hip had been left in, not just a small patch like the last time. This strip was a foot long and four inches wide, and on either side of it were long rows of sutures. If feeling like a freak had been more in my mind than in my face at other times in my life, the visage I saw staring back at me was undeniably repulsive. The feeling was confirmed for me whenever I went out on the street. People would stop in their tracks and stare at me. One afternoon a beggar ran up behind me, demanding money. I stopped and turned around to look at him. He stopped in midsentence, looked at me for a second longer, then politely apologized and handed me a dollar bill before turning away, muttering to himself. My self-esteem reached the bottom of the deepest, darkest pit.

I was promised a revision operation before going back to school, and I placed all my hope on that. Maybe it wasn't really so bad after all, I tried to tell myself: the swelling would eventually go down and the skin would be taken away. I simply had to accept that and try my best to make use of the time spent waiting, numb any and all desires to look normal. I spent a lot of time sitting alone in the dark kitchen, which had only one small, lightless window, sweating from the heat and giving myself pep talks, diatribes on the truer meaning of life.

One afternoon the phone tang. It was Steven, one of my friends from college. When he asked how I was, I tried to answer, but all that came out was choking tears. "Hang on," he said, "I'm coming to get you." An hour later the bell rang. When I opened the door, I expected to have to go into a long explanation about why I looked the way I did, but before I could start Steven announced we were going dancing that night. Dancing? Was he serious? He was. He had only just come out as a homosexual, and he told me I was the only one he trusted enough to accompany him to the gay clubs. It was important, he said: he was counting on me to support him.

 

My own sexuality completely on hold, I found myself in a world composed of sex. I felt both safe and amazed by my sudden proximity to dozens of half-naked men suggestively grinding their hips on the dance floor. The club was called The Monster, and the sex here had nothing to do with me. No one took any notice of me—I was without value in this world. It was easy to sublimate my own desire and sustain my feelings of physical worthlessness. I put all my energy into learning to dance. My teachers were some of the great anonymous masters of the mid-eighties dance club scene. I spent my first few visits watching before finally getting up enough nerve to go out on the floor myself. Never in a million years would I have been able to do this in a heterosexual club, but here, what the hell? I learned the balance between letting loose and keeping control, allowing my body to react impulsively to the beat and directing that impulse into a more meditated, skilled movement. It was all about rhythm, about finding the place where the music's rhythm met my own. As I danced I thought how this wasn't all that different from making art. Every once in a while I would think, fleetingly, that this must also be what it was like to act sexually in the world. But mostly I just treated the experience academically.

Later, in my senior year, I became friends with a group of transvestites I'd met in the clubs. They took me under their wing. Lying back on a clothes-strewn bed, I'd spend long evenings watching them prepare to go out, a process that could last for hours. Their notions of beauty were extreme: gobs of makeup, technicolor dresses, and, most crucial of all, they tried to impress upon me, the art of accessorizing. Sometimes my friends would drag me off the bed and gather around to play with me, experimenting with different makeup techniques. They put on absurd amounts of everything from foundation to lipstick to false eyelashes. Looking at myself in the mirror, I was in little danger of having to think of myself as a "real" girl doing real girl things. I'd been trying for an androgynous effect, and with my slight figure shrouded in baggy clothes, I was often mistaken for a boy. I felt very safe dressed this way. As I watched my friends dress up, I felt very far away from my own femininity.

I relished the eccentrics in my life. I seemed to know a lot of them, and each one introduced me to others. A friend of a friend introduced me to Divine, the famous female impersonator, and I found myself at parties populated by the likes of Andy Warhol, famous fashion designers, erstwhile rock stars. They rarely gave me more than a passing glance, but I felt a strange sense of belonging within these crowds of people, all of us so excessively bound to the world of appearance. I went to all the hippest of the hip clubs and danced myself into a frenzy.