Autobiography of a Face (11 page)

But the next morning I felt fine. I woke up and saw the wrinkled nightgown still on the chair and remembered what had happened. I breathed in deep, expecting to hear soft rales in my lungs, but there was nothing, not the slightest hint of congestion. Sitting up, I tried to gauge how I felt. Did I have a fever? Was my throat sore, did I feel weak at all? No. I felt perfectly fine. I didn't even feel tired. In fact, I felt better than I had all week, which seemed like the crudest joke, seeing that it was Friday, and in only twelve hours I would be right back in this same bed, throwing up.

I sought out different ways of getting sick. I experimented with drinking dishwashing liquid, but all that did was make me
feel
ill without actually
being
ill. I was too scared to try any other poisons I could find under the sink, having met two boys in the hospital whose lips, tongues, and throats had been burned away from drinking substances found beneath the sink. Roy, the one boy I was friends with, had a feeding tube in his nose, which he swung about like an elephant's trunk. Charlie, the other mouthless boy, was younger and had a mean look in his eye; whenever I was admitted to the ward I scanned the chart list for his name, hoping he wasn't there.

My pet project was inhaling water. Once, while nauseous, I'd inhaled some of my own vomit, and my lungs had reacted instantly with a case of pneumonia. Unfortunately for me, the pneumonia came right before Christmas, at the very end of a cycle of shots, when they were planning to stop anyway. If I could somehow get a small amount of fluid into my lungs, I figured I'd be set. I filled the bathtub and on the count of three submerged my head. Breathe, I'd tell myself,
breathe.
I saw it as a battle of my own will. I saw it as a test of
forcing
myself. I'd lie there until I ran out of breath, reemerge for air, then sink back under again, firmly telling myself that this time I was going to do it. When I finally found it in myself to open my mouth under water after countless attempts, my body would automatically heave itself up, sputtering water. For a moment my mouth and maybe even my throat filled with water, but the violent coughing I couldn't suppress prevented the water from reaching my lungs. The water in the bathtub sloshed around me and splashed over the sides, and the white towels, soaked from mopping up the water on the floor, hung like flags of surrender over the tub.

Most drastically, I experimented with scratching my arms with rusty nails I found lying on the street. A case of tetanus—the lockjaw everyone thought I'd had in the very beginning—still seemed preferable to chemo. I remember sitting on the stone steps in our back yard one afternoon, the summer sun glaring down. I was listening to the screams of the neighborhood children I hardly ever played with anymore and trying to scratch myself with the top of a dirty tin can. Again something held me back; while I could raise a good welt, I never scratched forcefully enough to break the skin or draw blood. Something always held me back, and for the longest time I thought it was cowardice.

 

Letters from strangers all across the country started arriving in the mail. Somehow my name had found its way onto a Catholic prayer list. The letters, on colored stationery bordered with flowers, cats, intricate motifs, were usually short, written in rounded hands. All of them assured me that Jesus loved me, and if I loved him he would take on his share of the burden. One woman sent me a picture taken from her kitchen window, a snowy back yard with a bird feeder covered with sparrows. "When I'm sad," she told me, "I look at my birds, and they make me happy." Letter after letter confessed similar thoughts, advised me to think happy things, think of kittens, of foods I like to eat. My family got a kick out of reading these letters. With our bitter, cynical air we mocked them out loud, laughing at their naivete, their unbounded simplicity. Every letter promised a prayer said in my name.

I laughed along with my brothers and sisters, but part of me longed for the world of those letters, just as I longed for the world I watched on television, on
Father Knows Best
and
The Brady Bunch.
I fantasized about these shows, imagining what would happen if one of their children got cancer. Everything would be talked about, everything dealt with. No one would ever lose his temper. No one would go unnoticed.

Along with the letters came pamphlets, Christian publications mostly geared toward children. They told stories of mysterious strangers who appeared on the doorsteps of troubled families, strangers with a special shine to them, a kind look and a light in their eyes. A quality of calmness and fairness infused the difficult tasks the stranger performed, whether mediating an argument between parents or helping an invalid. He glowed with love and peace and understanding. The aura was as palpable as a physical feature, and everyone who met him could not help but notice it. After a few days he would leave the family, having impressed upon them how they too could be happy and peaceful if only they let God into their lives.

In the secrecy of my room, I decided I wanted this light, this peace, this glow. But the scenarios always ended the same way, with the stranger leaving and the troubled family left alone to ponder and resolve to change. I always wanted to turn the page, to know how or what the troubled family could actually
do
in order to believe. After all, I was sold, I
wanted to
have Jesus help me out and make me good and strong and pure, all of the things I was sure I wasn't—but exactly
how
was I supposed to do this?

Sooner or later we're all driven to this point. In secrecy, away from my family and our shared scorn over the cards and their simplistic sentiments, I sat down in my bedroom on the blue carpet and asked, "God, if you exist, prove it to me."

What was I expecting? A voice, a verbal affirmation? A physical one? I looked down at the carpet, half expecting it to change color. A sudden light, maybe? I looked up into the air above my head for it. I knew I only half expected an answer. Was my partial belief preventing God from speaking to me? Didn't I have to
fully
believe, or did all this simply mean that there
was no
answer? I hugged my knees close into my chest and rocked back and forth on my heels. I couldn't bear to think I was wrong, that somehow everything I was going through didn't actually have meaning.

I stretched my arm out in front of me and flexed it, opened and closed my fingers. I resolved to Believe, even in the face of this lack of response. Was it possible to prove my worthiness by repeatedly asking the question, even in the brunt of this painful silence? In the same way I was sure I could prove my love, and lovability, to my mother by showing her I could "take it," I considered the idea that what God wanted from me was to keep trying and trying and trying, no matter how difficult it was. My goal, and my intended reward, was to understand.

 

Life became more complicated at home when my father lost his job in the news department at ABC. The loss of his job meant the loss of his medical coverage. Luckily my mothers job was able to take up part of my coverage, but we were still in a bind. Family life became more tense. Days were filled with phone calls and letters and endless forms. Nights were filled with even more arguments about money. Under my father's plan, the hospital pharmacy had sent the drugs used in my treatment up to the clinic. Now we had to pick up and pay for the drugs ourselves. To my extreme horror, this meant we had to store them in the refrigerator at home. Every time I opened its door, there they were, a row of short glass vials lined up in the butter rack. The cold light glinting off them made my stomach lurch.

For some inexplicable reason, the new coverage, so inadequate in so many ways, paid for an ambulance to transport me to the hospital each day. The notion thrilled me. But the day the ambulance actually pulled up in front of our house I felt self-conscious and awkward as I walked down the lawn. A group of neighbors had come out to see what was happening and stood there in a circle, watching. "I'm not really that sick," I wanted to tell them. "This is just a big joke, get it?" Though I knew I'd lost weight and was a bit pale, I never considered myself all that sick. I thought of myself as separate from them because of what I'd gone through, but it didn't occur to me until then that people might actually
pity me.
The idea appalled me.

Horrified as I was that people might feel sorry for me, I also knew that I possessed a certain power. After all, people noticed me. Wherever I went, even just to the store with my mother, I was never overlooked. I could count on some sort of attention, and I discovered that people were embarrassed when I caught them looking at me. I stared right back at these strangers with my big blue eyes, which appeared even bigger now that I'd lost weight and now that, without bone to shape it, the right side of my face was starting to sink in. They always looked away quickly, trying to pretend they hadn't been staring.

If this type of attention wasn't always comfortable for me, it nonetheless further defined me. Most people struggle all their lives to avoid fading unnoticed into the crowd, but this was never my concern. I was special. Being different was my cross to bear, but being aware of it was my compensation. When I was younger, before I'd gotten sick, I'd wanted to be special, to be different. Did this then make me the creator of my own situation?

The ambulance rides continued for only a few weeks. Then my father got a new job at CBS and I was again covered by his medical insurance, meaning no ambulance and no more storing the drugs in the refrigerator. I was relieved on both counts. My mother and I once more took up our daily drives to the hospital. The whole way there I stared out the window and as before imagined myself on a horse, galloping along the strip of grass beside the road, jumping the irrigation ditches and road signs.

EARLY ON IN THE TREATMENT MY HAIR BEGAN TO
fall out. Although I had been warned, I was taken by surprise the first day I reached up to sweep my hair back and found a handful of long blond hair in my hand. I guess I'd never believed this really would happen. I was sitting in the car with my mother when I first noticed it, and I started to cry. At a loss to say anything that would truly comfort me or stop my hair from falling out, my mother reminded me that I had known this would happen, that I shouldn't get so upset—as if foreknowledge of an event could somehow buffer you from its reverberations. Feeling, again, that I had failed simply by being upset made me cry harder.

I'd never thought much about my hair. I had been complimented on it, but such remarks had never particularly interested me. More often than not, my hair seemed like a bother to me, something that got in the way when I wrestled or climbed trees. But now? When I undressed at night, I heard the static of my sweater as I pulled it over my head, then saw the long strands on the collar waving in the breeze of its electricity. I'd sit up in bed in the morning and look down at the tangles of hair on my pillow. As water tan out of the bath, I had to sit on the edge of the tub and reach over several times to free up the drain. Once an aggressive, careless brusher, I now patted at my head with a comb very carefully and very gently.

Involved as I was with the physical process of losing my hair, I somehow ignored the change in my appearance. I knew I was going bald, I knew I was pale and painfully thin, I knew I had a big scar of my face. In short, I was different-looking, and I knew my face had an effect on other people that I could sometimes use to my advantage. But I was still keeping myself ignorant of the details of my appearance, of the specific logic of it. My intuition must have known it was better this way.

In the same way that I understood the extent of my illness while not actually admitting I was ill, I spent a very long time not acknowledging that I was going bald, even as I swept my own hair off the dog's black coat after a particularly vigorous hug. I was too young, only ten, almost eleven, to be any Samson. Sex appeal belonged to toothpaste commercials, while sex itself was still a mysterious thing, clues to which could be found in the pages of my brother's magazines. Though the pictures were mysteriously compelling, I mostly found them slightly repulsive, and I regarded sex, whatever it was, as something I'd surely never take part in. I looked at myself in the mirror with a preoccupied preadolescent view, which is to say that I looked at myself but didn't judge myself. When the first taunts and teases were thrown at me, usually by some strange kids in the supermarket parking lot, more often than not I was able to come back with an insult far more sarcastic and biting than their own rather unimaginative Baldy or Dog Girl. I understood that their comments were meant to impress each other more than harm me. I possessed a strong sense of myself—and I lived vividly in my world of hospitals and animals and fantasy. I had no sense of myself in relation to the "normal" people I walked by every day. I was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority to them, for the moment, anyway.

Sometimes when I was in the hospital, days or even a week would pass before I was well enough to get up and wash my hair. I hated the way it got oily and lanky and bunched up in tangles behind my head from lying on it so long. That first morning when I could get up and wash it was always a great relief. But finally one morning, when I asked my mother to help me wash it, she looked at me sorrowfully and suggested, in a kind voice, "Maybe it's time to cut it." And that's what we did. She borrowed a pair of scissors from the nurse's desk, and while I sat in a chair she snipped off what remained of my hair, my white, white scalp shining through. We discovered for the first time that I had a large birthmark above my left ear.

The next morning my mother came in with a hat, a small white sailors hat, which I put on and almost never took off for the next two and a half years, even during the periods when my hair was growing back in. Sometimes it grew several inches and was perfectly presentable as hair, but I knew it was only going to fall out again, and I refused to be seen in public without my hat. My hat. It became part of me, an inseparable element of who I thought I was.