Autobiography of a Face (19 page)

A few minutes later a nurse came to empty his mine catheter bag. I knew he had one—I had one too—but I'd never thought about how it might work with a man. The nurse didn't close the curtain properly, and when I looked over I saw for the first time an adult male's penis, this one being pushed up and held falsely erect by the tube inserted into it. It came as a shock because it was the first time I acknowledged that Michael, at the age of seventeen, was permanently paralyzed, all because of a stupid trick that took him ten seconds to perform.

I couldn't help but compare his situation to my own. My life was "different" from most people's, but it was essentially my own. I hated the face I remembered having a few days ago, and I knew nothing of the face I had now except that I feared it. But it existed, and I had only to look at it to know what it was. Michael had lost something he was never going to get back; my face had only changed into the next shape it was meant to have. I could not dare to think I might actually want or like that shape, but I had a sudden realization that to have it at all meant something.

Two days later I was transferred to a regular ward. As I was wheeled away I promised Michael I would come visit him, but I never did. As soon as I was back on the ward filled with nose jobs and jowl tucks, I grew fearful of my distorted face again and put Michael and his predicament out of my mind. I was walking to the bathroom by myself now, and each time I opened the door I saw my own face reflected back at me. Was that really me? I knew it had to be, but how could it possibly relate to the person I thought I was, or wanted to be? I considered the whole operation a failure, and when the doctors came around and told me how well it was healing, how good it looked, my heart sank. We were speaking two different languages; if this looked good, then what I thought would look good must be an impossible dream. I felt stupid for having had any expectations or hopes at all.

When I got home, I thought of Michael again and again. Did he ever reimagine himself standing on that roof or try to remember what it was like to not know his fate for just one split second longer? If he didn't, I did it for him. I'd close my eyes to feel the height, see the bright blue of the pool winking below me, bend my legs, and feel the pull in my calves as I jumped up and then down, falling from one world of unknowing into the next one of perpetual regret.

IT WAS ONLY WHEN I GOT HOME FROM THE HOSPITAL
that I permitted myself to look more closely at my new face. It was still extremely swollen (it would be months before it went down), and a long thin scar ran the length of it. In the middle of the scar was the island of pale skin from my hip. Placing my hand over the swollen and discolored parts, I tried to imagine how my face might look once it was "better." If I positioned the angle of my face, the angle of my hand, and the angle of the mirror all just right, it looked okay.

Actually, in my mind, my face looked even better than okay, it looked beautiful. But it was a beauty that existed in the future, a possible future. As it was, I hated my face. I turned my thoughts inward again, and this strange fantasy of beauty became something very private, a wish I would have been ashamed to let anyone in on. Primarily it was a fantasy of relief. When I tried to imagine being beautiful, I could only imagine living without the perpetual fear of being alone, without the great burden of isolation, which is what feeling ugly felt like.

The beginning of high school was a couple of months away. Each day I checked my face in private, wondering what I would look like by my first day at a new school. I expected to have a second "revising" operation before school started, but as it turned out I would have to wait at least another three months, a span of time that seemed useless and insurmountable. What was the point, if I still had to walk into school that first day looking like this?

There was only one solution, and that was to stop caring. I became pretentious. I picked out thick books by Russian authors and carted them around with me. Sometimes I even read them.
Anna Karenina, The Brothers Karamazov, Dead Souls.
I read
Jude the Obscure
simply because I liked the title, and anything else that sounded difficult and deep. Often I missed the subtle nuances of these books, but they presented a version of the world in which honor and virtue and dedication to the truth counted. The stories comforted me, though it didn't escape my attention that these qualities were ascribed primarily to men. The women might be virtuous as well, but their physical beauty was crucial to the story.

On the first day of school I rode the bus, entered my strange homeroom, and went through my day of classes as invisibly as possible. By now my hair was long, past my shoulders, and I walked around with my head bent, my dark blond hair covering half my face. Having decided against seeking anything as inconsequential as social status, I spent the days observing my peers with a perfectly calibrated air of disinterest. I remained the outsider, like so many of the characters I had read about, and in this role I found great comfort. Doubtless I was more keenly aware of the subtleties of the various dramas and social dances of my classmates than they were themselves.

For the most part I was left alone. People were a bit more mature, and it was rare that anyone openly made fun of me. But I was still braced for the teasing. Every time I saw someone looking at me, I expected the worst. Usually they just looked the other way and didn't register much interest one way or the other. Then, just as I would start to relax, to let my guard down, some loudmouthed boy would feel a need to point out to his friends how ugly I was.

One day when I went to my English class, I found a copy of Hesse's
Siddhartha,
his version of the story of the Buddha, lying on my chair. My notions of Buddhism were sketchy at best, but the opening pages immediately reminded me of the messages of grace, dignity, and light that I'd first encountered in those Christian publications, which had long since ceased arriving in the mail. I'd almost forgotten about my quest for enlightenment, imagining my momentous meeting with the great guru. Now, after so much time and so much loss, I took it as a sign that someone had left this book on my chair. Desire and all its painful complications, I decided, was something I should and would be free of.

 

Two months after school started, the long-awaited revision operation was scheduled. I started focusing on the upcoming date, believing that my life would finally get started once I had the face I was "supposed" to have. Logically I knew that this was only one of many operations, but surely it would show promise, offer a hint of how it was all going to turn out.

When I woke up in recovery the day after the operation, I looked up to see a nurse wearing glasses leaning over me. Cautiously I looked for my reflection in her glasses. There I was, my hair messed and my face pale and, as far as I could tell, looking exactly the same as before. I reached up and felt the suture line. A few hours later, when I was recovered enough to walk unaided to the bathroom, I took each careful step toward the door and geared myself up to look in the mirror. Apart from looking like I'd just gotten over a bad case of flu, I looked just the same. The patch of paler skin was gone, but the overall appearance of my face was no different from before.

I blamed myself for the despair I felt creeping in; again it was a result of having expectations. I must guard against having any more. After all, I still had it pretty good by global standards. "I have food," I told myself. "I have a place to sleep." So what if my face was ugly, so what if other people judged me for this. That was their problem, not mine. This line of reasoning offered less consolation than it had in the past, but it distanced me from what was hurting most, and I took this as a sign that I was getting better at detaching myself from my desires.

When I returned to school I had resolved that my face was actually an asset. It was true I hated it and saw it as the cause of my isolation, but I interpreted it as some kind of lesson. I had taught myself about reincarnation, how the soul picks its various lives with the intent of learning more and more about itself so that it may eventually break free of the cycle of karma. Why had my soul chosen this particular life, I asked myself; what was there to learn from a face as ugly as mine? At the age of sixteen I decided it was all about desire and love.

Over the years my perspective on "what it was all about" has shifted, but the most important point then was that there
was
a reason for this happening to me. No longer feeling that I was being punished, as I had during the chemo, I undertook to see my face as an opportunity to find something that had not yet been revealed. Perhaps my face was a gift to be used toward understanding and enlightenment. This was all noble enough, but by equating my face with ugliness, in believing that without it I would never experience the deep, bottomless grief I called ugliness, I separated myself even further from other people, who I thought never experienced grief of this depth. Not that I did not allow others their own suffering. I tried my best to be empathic because I believed it was a "good" emotion. But in actuality I was judge and hangman, disgusted by peers who avoided their fears by putting their energy into things as insubstantial as fashion and boyfriends and gossip.

I tried my best, but for the most part I was as abysmal at seeking enlightenment as I had once been at playing dodge ball. No matter how desperately I wanted to catch that ball, I dropped it anyway. And as much as I wanted to love everybody in school and to waft esoterically into the ether when someone called me ugly, I was plagued with petty desires and secret, evil hates.

I hated Danny in my orchestra class because I had a crush on him and knew that he would never have a crush on me. Anger scared me most of all, and I repressed every stirring. Every time I felt hatred, or any other "bad" thought, I shooed it away with a broom of spiritual truisms. But the more I tried to negate my feelings, the more they crowded in. I not only harbored hatred for Danny even while I had a crush on him, I also hated Katherine, the girl in orchestra
he
had a crush on. Trying to repress that feeling, I found myself hating Katherine's cello, of all things, which she played exquisitely well. The cycle eventually ended with me: I hated myself for having even entertained the absurd notion that someone like Danny could like me.

I didn't begrudge Danny his crush on Katherine. She was pretty and talented, so why shouldn't he want her? I was never going to have anyone want me in that way, so I mustn't desire such a thing; in this way I could be grateful to my face for "helping" me to see the error of earthly desire. This complicated gratitude usually lasted for about five minutes before giving way to depression, plain and simple.

 

When my father's insurance money came, and before we learned of the accumulated tax debt we owed, my mother generously kept her promise and bought me another horse. Her registered name was even more silly than Sure Swinger, so I simply called her Mare. I kept her at Snow-cap, a more professional and better-kept stable than Diamond D. There I undertook learning to ride seriously. I fell in love with Mare just as I had with Swinger, and again I had bad luck. Not long after I got her, she broke her leg while turned out in a field. As she limped pathetically onto the trailor to be taken away, they told me they could sell her as a brood mare, but I knew she was too old for this and would be put down shortly. Again my heart was broken, but this time I saw it in much more self-pitying terms. I told myself that anything I loved was doomed, and even as I was aware of my own overblown melodrama, just as I had been that night I nearly collapsed on the hospital floor, I took a strange comfort in this romantic, tragic role.

Luckily, the owners of Snowcap permitted me to continue on at the barn as their exercise rider. This was ideal. Not only did I get to ride horses for free, sometimes as many as six a day, and gain a great deal of experience in the process, but it also gave my life a center. I withstood school all day, knowing I would go straight to the barn afterward and stay there until eight or nine o'clock at night. The barn became the one place where I felt like myself, and I relished the physicality of riding, performing acts I was good at, feeling a sense of accomplishment. I spent as little time at home as possible.

During tenth grade I had one more operation to work on shaping the free flap, and the results seemed as trivial and ineffectual to me as the last time. The following summer I spent every day with the horses. One day when it was too hot to get very much accomplished, I went along for the ride on an errand with some people from the stable. We got caught in traffic on the main road, and as we crept along at a snail's pace, I looked out the window and got lost in my own world. A bakery storefront, its door set at a very odd angle, caught my attention, reminding me of something I couldn't quite put my finger on. Then I remembered that I had been to this town some ten or twelve years earlier with my father. He loved to go out for a drive on a Sunday and explore the area, and Sarah and I loved to accompany him. We'd stand up in the back seat and sing songs with him, songs from his own distant childhood, so familiar and lovely to him that we could both hear that strange, sad. love in his voice as he sang. Unexpectedly, and consciously for the first time since his death, I missed my father.

The one time I had visited him in the hospital, I had had to wait outside in the hallway briefly. The smells and sounds were so familiar—the sweet disinfectant and wax, always an aroma of overcooked food in the background, the metallic clinks of IV poles as they were pushed along the floor on their stands. Yet I was only visiting, passing through. I had felt alone and without purpose, unidentified, not sure how to act. Now, more than a year after his death, I again didn't know how to act. I didn't want to ignore the grief or even get over it, because that would mean I hadn't loved my father. When my horse died, I had cried almost continuously for days. The loss was pure and uncomplicated. Loving my father had been a different matter. I finally and suddenly found myself consumed with a longing for his presence.