Autobiography of a Face (10 page)

Suddenly my perception of the world shifted. I wasn't the only person in the world who suffered. I had always heard other children wailing from behind closed doors all along the corridor outside Dr. Woolf's door, so it would be false to say that I found myself hearing them for the first time or more clearly. What happened was more hallucinatory. My sense of space and self lengthened and transformed, extended itself out the door and down the corridor, while at the same time staying present with me, with my mother, who, to my profound discovery, was suffering not just because of, but also for, me.

 

Moments never repeat themselves exactly. Simply because I understood something important and urgent and graceful there on the examination table, looking at my mother's red-rimmed blue eyes, didn't mean that only seconds later I wasn't back in another moment in which I hated myself for crying, for not being strong enough. The beautifully simple revelation I had with my father in Dr. Woolf's office was followed by his parting, his footfalls dimming down the hall, leaving me alone to contemplate what I had just learned. My mother's very presence forced me to be present, disallowing me to dwell, and the comfort I gained from understanding her pain was both fleeting and insidious. Fleeting because that is the nature of all moments, and insidious because once I had tasted the freedom and transcendence of my epiphany, I wanted only to return to it. I confused that graceful state of mind with the attached solace it brought, so when the next injection came, the next bout of crying, and I
wasn't Mt
to not suffer I felt I had only myself to blame, felt that I had failed in some unknowable, spiritual way. In my mind I didn't have what it took: I didn't deserve to be comforted.

At night I dreamed that the children I was baby-sitting for had slipped down to the bottom of the pool we were standing by and had drowned. Try as I might, I could never fill my lungs with enough air to reach the bottom, where they lay struggling, the eerie light lapping over them. Afterward their useless corpses rose to the surface. I had to go to their parents, my empty arms outstretched toward them, my clothes soaking wet, and explain what had happened, how I had tried my best, really I had, but still, it wasn't enough.

NEXT TO THE GARAGE THERE WAS A SMALL ISLAND
of grass between the sea of driveway asphalt and the front walk of cement. Smack in the middle, a meager fir tree splayed its boughs just high enough off the ground for me to sit in the shade beneath them, the earth dark and sweet smelling. To the south I was able to survey what amounted to my version of a grassy plain; to the north a jungle of thick moss grew up around the mouth of a gutter drainpipe. This was my kingdom. Plastic animals bought at the local drugstore inhabited it, and together we lived our urgent lives.

The lion, my favorite, had muscles permanently rippled into his hard plastic body. He lived in the cave I built for him out of stones not far from the gutter drainpipe. Every morning I took him out of the fresh grass bed I'd made the previous night, and together we surveyed the island, checking on the other animals safely tucked into their own domiciles. The aardvark was stashed beneath the tree, the ibex and giraffe installed on the border of the grassy plain, the zebra roamed between the jungle and the plain, and the snake I relegated to the rocks near the tip of the island. Manufactured by a different company, the snake was slightly incompatible with the other animals in size and coloring, and as a result he never received my most complete care. The animals never came inside the house, never left the island, which to me was the most authentic aspect of their lives.

My mother insisted that I wasn't taking very good care of them when I complained that one of the dogs had chewed on my giraffe or zebra during the night. How could I explain why it was crucial for me, safe inside my bed at night, to think of them out there, living their continuous lives regardless of my presence. I especially loved the nights when the weather became wild, imagining my animals braving the elements, the wind howling and rain beating down. Every morning I had the distinct sense that I was simply opening the door on an ongoing world, constant and sure, that went on into the growing dark even if I was stuck inside, too sick to get out of bed.

When I wasn't on my island, I was riding for the pony express, though sometimes I was a Martian, sent to this planet on a surveillance mission. I was myself only in the briefest of moments, the most passing encounters, a stranger walking brusquely by in the hall. As an alien, I could transform myself anywhere, anytime. Sometimes I was still a human, but one sent here from a future so distant I could in no way comprehend what the everyday things of the present time meant; other times I was an alien who'd taken on human form and walked imperceptibly among a race that mistook me for one of their own. Sitting in the car or a waiting room, I'd examine everything around me carefully, objectively. What exactly was this peculiar ritual of the tollbooth? What was the significance of the different types of footwear? The whole trick was to forget myself, forget what I really knew, break all my preconceptions.

The only time I was ever completely myself was on Fridays. There was no way to escape the pain. Yet with each successive visit to Dr. Woolf's examining room, my feelings of shame and guilt for failing not to suffer became more unbearable. The physical pain seemed almost easy in comparison. Was this how my body dealt with the onslaught, veering the focus away from itself, insisting that its burden be lessened by having my mind take on more than its fair share? Whatever the process was, it worked—worked in the sense that I became adept at handling my pain, deft at addressing its various complaints and demands for attention.

Afterward I'd lie in bed and concentrate on letting the tremors run their course, allowing them free access to all of me so that, like some bear sniffing me out, they'd gradually grow bored and amble away, leaving me alone and exhausted but still alive. Some pain, like the pain of a needle or the site of an operation, is specific: it announces itself in no uncertain terms. Often I tried to balance the pain out with the rest of my body, a sort of negotiation in which I'd isolate one section. I'd lie there and list to myself the parts that didn't hurt, trying to feel them, aware that normally I'd have no reason to "feel" my body or know it so intimately.

I was becoming aware that I was experiencing my body, and the world, differently from other people. For hours I'd lie in bed either at home or in the hospital and run my finger back and forth along the wall or the bedrails beside me, conversing silently with myself in the third person, rationalizing the situation, setting down the basic premises of my secret philosophy, occasionally even telling myself I was lucky, lucky to have this opportunity to know such things. At times I was desperate and could find no solace anywhere. Nothing seemed to work, and the weight of being trapped in my own body made it difficult to lift even a hand off the sheets. Other times a sort of physical awareness would take hold of me. Each breath was an important exchange with the world around me, each sensation on my skin a tender brush from a reality so beautiful and so mysterious that I would sometimes find myself squealing with the delight of being alive.

Pain centered in my head was the most difficult to deal with. It's one thing to ignore your arm or your stomach, but ignoring your head isn't quite so simple. The radiation treatment was beginning to take its toll, and open sores began appearing all over the insides of my cheeks. The first time I felt them was while eating a bowl of tomato soup. Each mouthful stung, and, since no one had told me that radiation burns were a common side effect, I suspected the soup of being no good. When I thought no one was looking, I carried my bowl from the living room, where I was eating in front of the television, into the bathroom, where I overturned it into the toilet. The soup sunk in scarlet, silty swirls to the bottom of the white porcelain, and I let it lie there for a few moments before flushing it away. I didn't want to say anything to my mother because I was afraid she'd see this as yet another of my ploys to not eat. I was losing weight rapidly, and everyone seemed to be shoving food in my face, food I had little interest in. Eating had become a monumental effort, and I couldn't explain to my mother or the nurses that simply finishing one boiled egg was tantamount to an act of heroism.

Now there was a new item on the already long list of why it was hard to eat: not only did I have trouble chewing and swallowing, not only was my stomach in turmoil half the time, but now it actually
hurt
to put food in my mouth. It got worse. As the radiation treatment went on, I could eat only the blandest of foods. Any sort of fruit was out of the question: drinking orange juice felt like I was rinsing my mouth out with battery acid. Anything salty or even vaguely spicy, such as ketchup, ignited my tongue and the raw, tender skin of my cheeks. I lived almost exclusively on oatmeal, disgusting protein drinks that practically had to be forced down my throat, and endless dozens of junk-food chocolate cream rolls, my mother's welcome bribe for the protein drinks. I loved eating entire boxes of these disgustingly sweet and fatty things slowly and with embellished delight in front of Susie and Sarah, who were eternally on some new diet.

 

After every six weeks, I was admitted to the hospital, to my beloved Babies 10, for a five-day course of intensive chemotherapy. I actually looked forward to these times in the hospital. The doctors set up the IV and administered the yellow fluid slowly and continuously, which didn't make me feel as intensely ill as the weekly injections of a concentrated dose. And if I did feel ill, I simply threw up in my basin and lay back in my white bed, secure in knowing that no one cared too much if I threw up or not, cried or not: I felt free and sovereign. I was considered a "regular customer" on the ward. I knew all of the nurses, knew the routines and the jargon, and often found myself explaining things to the rookie doctors who rotated on and off the ward. With no school responsibilities to speak of, no family tensions to deal with, I considered going into the hospital something just short of a vacation.

Even now, hospitals elicit intense nostalgia in me, the vague longing that attaches itself to almost any version of the past, as if it is context, not content, that really counts. A feeling rises up in me, and though I know I was often in pain, I remember myself as being happy in the hospital, lying in the heavily starched sheets, hearing the sounds and movements of other people just outside the door.

At home it was different. Those long quiet mornings in the house still gave me pleasure, but as soon as the silence was broken, as soon as anyone entered the front door, tension and shame accompanied them. Unable to locate my unhappiness within the difficult and complex family relationships we all shared, I thought that it all originated with me, that I was somehow at fault. If I couldn't overcome my growing depression, I deserved it, and how unfair of me to inflict it upon everyone else, upon my mother especially.

I was willing to try anything to get out of the weekly chemo shots. The only way to do this was to be too sick to withstand it. Holding the thermometer up to the light bulbs heat and other elementary-school tricks were ancient history. I had to be
really
sick, had to have a measurable increase in my white blood cell count, indicating an infection.

My first experiment in making myself ill came about innocently. It was a Thursday in early winter, and everyone was asleep except my father, who was working late again. Icy rain was falling all over the state. News reports warned people not to drive if they could avoid it. The temperature was hovering just at thirty-two degrees. The local television station showed a map of New York with cotton-ball clouds floating over it, clouds weeping blue raindrops mixed with white circles of hail. The whole picture looked like the thought balloons over cartoon characters' heads, as if New York State itself was
considering icy
rain, thinking it over.

I lay in bed thinking about my island, and suddenly I was overcome with a desire to go outside and see how my animals were faring in the storm. I thought of the teal cows I'd seen from the car, standing staunchly in their fields, shivering, the black part of their hides gleaming wetly, a faint steam rising from them. I got out of bed and pulled down my long flannel nightgown, which had bunched up around my waist in bed. Without bothering to put on shoes, I walked toward the garage door and let myself out as quietly as possible, trying not to waken the dogs. I felt the chill run up my legs.

My animals were fine, just where I'd left them. I was disappointed that the rain only shellacked their bodies instead of being absorbed into them in dark, shiny streaks, as real skin and hair would allow. Standing there, only a few feet from the door, I began to shiver. That's when it hit me that if I stayed outside I was going to catch cold. I was going to get sick, perhaps even sick enough to raise my white blood cell count. It seemed like the perfect plan. Walking into the dark back yard, I found a spot where I knew that no one looking from inside the house would be able to see me, and lay down on the cold wet grass. I tried looking up at the black, chalky sky, but the rain kept splashing into my eyes, forcing me to close them. How long would I have to stay out here? What would I do with the evidence of my wet nightgown? If I hung it near the heater, would it dry before my mother Saw it in the morning? The cold began to get painful. My teeth chattered. If I couldn't stay out here long enough, if the discomfort of the cold drove me inside before I had a chance to get really ill, would that mean I was a failure even in this?

My nightgown soaked through, making it almost transparent. I could see my tiny nipples, pink and hard, and below them, my sharp hips sticking up. I lay there until I couldn't stand it anymore, until my fingers were stiff and red and starting to swell. Once inside again, I pulled off my nightgown and hung it over a chair. If my mother found it, I would tell her I'd thrown up on it and washed it myself in the sink. It was sensual and delicious to be back in my warm bed, the sheets absorbing the water from my naked skin. I fell asleep almost instantly, a rarity for me.