Touchstone Anthology of Contemporary Creative Nonfiction (41 page)

Halloween, that night of frights, became my favorite holiday because I could put on a mask and walk among the blessed for a few brief, sweet hours. Such freedom I felt, walking down the street, my face hidden! Through the imperfect oval holes I could peer out at other faces, masked or painted or not, and see on those faces nothing but the normal faces of childhood looking back at me, faces I mistakenly thought were the faces everyone else but me saw all the time, faces that were simply curious and ready for fun, not the faces I usually braced myself for, the cruel, lonely, vicious ones I spent every day other than Halloween waiting to see around each corner. As I breathed in the condensed, plastic-scented air under the mask, I somehow thought that I was breathing in normality, that this joy and weightlessness were what the world was composed of, and that it was only my face that kept me from it, my face that was my own mask that kept me from knowing the joy I was sure everyone but me lived with intimately. How could the other children not know it? Not know that to be free of the fear of taunts and the burden of knowing no one would ever love you was all that anyone could ever ask for? I was a pauper walking for a short while in the clothes of the prince, and when the day ended, I gave up my disguise with dismay.

I was living in an extreme situation, and because I did not particularly care for the world I was in, I lived in others, and because the world I did live in was dangerous now, I incorporated this danger into my secret life. I imagined myself to be an Indian. Walking down the streets, I stepped through the forest, my body ready for any opportunity to fight or flee one of the big cats that I knew stalked me. Vietnam and Cambodia, in the news then as scenes of catastrophic horror, were other places I walked through daily. I made my way down the school hall, knowing a land mine or a sniper might give themselves away at any moment with the subtle metal click I’d read about. Compared with a land mine, a mere insult about my face seemed a frivolous thing.

In those years, not yet a teenager, I secretly read — knowing it was somehow inappropriate — works by Primo Levi and Elie Wiesel, and every book by a survivor I could find by myself without asking the librarian. Auschwitz, Birkenau: I felt the blows of the capos and somehow knew that because at any moment we might be called upon to live for a week on one loaf of bread and some water called soup, the peanut butter sandwich I found on my plate was nothing less than a miracle, an utter and sheer miracle capable of making me literally weep with joy.

I decided to become a “deep” person. I wasn’t exactly sure what this would entail, but I believed that if I could just find the right philosophy, think the right thoughts, my suffering would end. To try to understand the world I was in, I undertook to find out what was “real,” and I quickly began seeing reality as existing in the lowest common denominator, that suffering was the one and only dependable thing. But rather than spend all of my time despairing, though certainly I did plenty of that, I developed a form of defensive egomania: I felt I was the only one walking about in the world who understood what was really important. I looked upon people complaining about the most mundane things — nothing on TV, traffic jams, the price of new clothes — and felt joy because I knew how unimportant those things really were and felt unenlightened superiority because other people didn’t. Because in my fantasy life I had learned to be thankful for each cold, blanketless night that I survived on the cramped wooden bunks, my pain and despair were a stroll through the country in comparison. I was often miserable, but I knew that to feel warm instead of cold was its own kind of joy, that to eat was a reenactment of the grace of some god whom I could only dimly define, and that to simply be alive was a rare, ephemeral gift.

As I became a teenager, my isolation began. My nonidentical twin sister started going out with boys, and I started — my most tragic mistake of all — to listen to and believe the taunts thrown at me daily by the very boys she and the other girls were interested in. I was a dog, a monster, the ugliest girl they had ever seen. Of all the remarks, the most damaging wasn’t even directed at me but was really an insult to “Jerry,” a boy I never saw because every day between fourth and fifth periods, when I was cornered by a particular group of kids, I was too ashamed to lift my eyes off the floor. “Hey look, it’s Jerry’s girlfriend!” they shrieked when they saw me, and I felt such shame, knowing that this was the deepest insult to Jerry that they could imagine.

When pressed to it, one makes compensations. I came to love winter, when I could wrap up the disfigured lower half of my face in a scarf: I could speak to people and they would have no idea to whom and to what they were really speaking. I developed the bad habits of letting my long hair hang in my face and of always covering my chin and mouth with my hand, hoping it might be mistaken as a thoughtful, accidental gesture. I also became interested in horses and got a job at a run-down local stable. Having those horses to go to each day after school saved my life; I spent all my time either with them or thinking about them. Completely and utterly repressed by the time I was sixteen, I was convinced that I would never want a boyfriend, not ever, and wasn’t it convenient for me, even a blessing, that none would ever want me. I told myself I was free to concentrate on the “true reality” of life, whatever that was. My sister and her friends put on blue eye shadow, blow-dried their hair, and spent interminable hours in the local mall, and I looked down on them for this, knew they were misleading themselves and being overly occupied with the “mere surface” of living. I’d had thoughts like this when I was younger, ten or twelve, but now my philosophy was haunted by desires so frightening, I was unable even to admit they existed.

Throughout all of this, I was undergoing reconstructive surgery in an attempt to rebuild my jaw. It started when I was fifteen, two years after the chemo ended. I had known for years I would have operations to fix my face, and at night I fantasized about how good my life would finally be then. One day I got a clue that maybe it wouldn’t be so easy. An older plastic surgeon explained the process of “pedestals” to me, and told me
it
would take
ten years
to fix my face. Ten years? Why even bother, I thought; I’ll be ancient by then. I went to a medical library and looked up the “pedestals” he talked about. There were gruesome pictures of people with grotesque tubes of their own skin growing out of their bodies, tubes of skin that were harvested like some kind of crop and then rearranged, with results that did not look at all normal or acceptable to my eye. But then I met a younger surgeon, who was working on a new way of grafting that did not involve pedestals, and I became more hopeful and once again began to await the fixing of my face, the day when I would be whole, content, loved.

Long-term plastic surgery is not like in the movies. There is no one single operation that will change everything, and there is certainly no slow unwrapping of the gauze in order to view the final, remarkable result. There is always swelling, sometimes to a grotesque degree, there are often bruises, and always there are scars. After each operation, too frightened to simply go look in the mirror, I developed an oblique method, with several stages. First, I tried to catch my reflection in an overhead lamp: the roundness of the metal distorted my image just enough to obscure details and give no true sense of size or proportion. Then I slowly worked my way up to looking at the reflection in someone’s eyeglasses, and from there I went to walking as briskly as possible by a mirror, glancing only quickly. I repeated this as many times as it would take me, passing the mirror slightly more slowly each time until finally I was able to stand still and confront myself.

The theory behind most reconstructive surgery is to take large chunks of muscle, skin, and bone and slap them into the roughly appropriate place, then slowly begin to carve this mess into some sort of shape. It involves long major operations, countless lesser ones, a lot of pain, and many, many years. And also, it does not always work. With my young surgeon in New York, who with each passing year was becoming not so young, I had two or three soft-tissue grafts, two skin grafts, a bone graft, and some dozen other operations to “revise” my face, yet when I left graduate school at the age of twenty-five I was still more or less in the same position I had started in: a deep hole in the right side of my face and a rapidly shrinking left side and chin, a result of the radiation I’d had as a child and the stress placed upon the bone by the other operations. I was caught in a cycle of having a big operation, one that would force me to look monstrous from the swelling for many months, then having the subsequent revision operations that improved my looks tremendously, and then slowly, over the period of a few months or a year, watching the graft reabsorb back into my body, slowly shrinking down and leaving me with nothing but the scarred donor site the graft had originally come from.

It wasn’t until I was in college that I finally allowed that maybe, just maybe, it might be nice to have a boyfriend. I went to a small, liberal, predominantly female school and suddenly, after years of alienation in high school, discovered that there were other people I could enjoy talking to who thought me intelligent and talented. I was, however, still operating on the assumption that no one, not ever, would be physically attracted to me, and in a curious way this shaped my personality. I became forthright and honest in the way that only the truly self-confident are, who do not expect to be rejected, and in the way of those like me, who do not even dare to ask acceptance from others and therefore expect no rejection. I had come to know myself as a person, but I would be in graduate school before I was literally, physically able to use my name and the word “woman” in the same sentence.

Now my friends repeated for me endlessly that most of it was in my mind, that, granted, I did not look like everyone else, but that didn’t mean I looked bad. I am sure now that they were right some of the time. But with the constant surgery I was in a perpetual state of transfiguration. I rarely looked the same for more than six months at a time. So ashamed of my face, I was unable even to admit that this constant change affected me; I let everyone who wanted to know that it was only what was inside that martered, that I had “grown used to” the surgery, that none of it bothered me at all. Just as I had done in childhood, I pretended nothing was wrong, and this was constantly mistaken by others for bravery. I spent a great deal of time looking in the mirror in private, positioning my head to show off my eyes and nose, which were not only normal but quite pretty, as my friends told me often. But I could not bring myself to see them for more than a moment: I looked in the mirror and saw not the normal upper half of my face but only the disfigured lower half.

People still teased me. Not daily, as when I was younger, but in ways that caused me more pain than ever before. Children stared at me, and I learned to cross the street to avoid them; this bothered me, but not as much as the insults I got from men. Their taunts came at me not because I was disfigured but because I was a disfigured
woman
. They came from boys, sometimes men, and almost always from a group of them. I had long blond hair, and I also had a thin figure. Sometimes, from a distance, men would see a thin blonde and whistle, something I dreaded more than anything else because I knew that as they got closer, their tune, so to speak, would inevitably change; they would stare openly or, worse, turn away quickly in shame or repulsion. I decided to cut my hair to avoid any misconception that anyone, however briefly, might have about my being attractive. Only two or three times have I ever been teased by a single person, and I can think of only one time when I was ever teased by a woman. Had I been a man, would I have had to walk down the street while a group of young women followed and denigrated my sexual worth?

Not surprisingly, then, I viewed sex as my salvation. I was sure that if only I could get someone to sleep with me it would mean I wasn’t ugly, that I was attractive, even lovable. This line of reasoning led me into the beds of several manipulative men who liked themselves even less than they liked me, and I in turn left each short-term affair hating myself, obscenely sure that if only I had been prettier, it would have worked — he would have loved me and it would have been like those other love affairs that I was certain “normal” women had all the time. Gradually, I became unable to say “I’m depressed” but could say only “I’m ugly,” because the two had become inextricably linked in my mind. Into that universal lie, that sad equation of “if only…” that we are all prey to, I was sure that if only I had a normal face, then I would be happy.

The new surgeon in Scotland, Oliver Fenton, recommended that I undergo a procedure involving something called a tissue expander, followed by a bone graft. A tissue expander is a small balloon placed under the skin and then slowly blown up over the course of several months, the object being to stretch out the skin and create room and cover for the new bone. It’s a bizarre, nightmarish thing to do to your face, yet I was hopeful about the end results and I was also able to spend the three months that the expansion took in the hospital. I’ve always felt safe in hospitals: they’re the one place I feel free from the need to explain the way I look. For this reason the first tissue expander was bearable — just — and the bone graft that followed it was a success; it did not melt away like the previous ones.

The surgical stress this put upon what remained of my original jaw instigated the deterioration of that bone, however, and it became unhappily apparent that I was going to need the same operation I’d just had on the right side done to the left. I remember my surgeon telling me this at an outpatient clinic. I planned to be traveling down to London that same night on an overnight train, and I barely made it to the station on time, such a fumbling state of despair was I in.