Autobiography of a Face (7 page)

They started feeding me through a gastronasal tube, which had been inserted earlier. Each mealtime a tray arrived with my name on it, a tray filled with liquidated
everything
even turkey. I asked them to let me smell each container before they poured it into the tube. Aroma alone started to revive me. I could feel the hot or cold of the liquid pass through my nose and the back of my throat.
Finally, at about five in the morning of my tenth birthday, I tricked a nurse into giving me some orange Jell-O. It was the first thing I'd eaten in a week, and instantly I felt better, began to see that this bed wasn't a continuous state, that one day, one way or another, I would feel better.

When my whole family came to visit me for my birthday, I sat in a wheelchair and gazed at them, feeling splendid. I could tell they were shocked at the sight of me. I had been an absolutely normal nine-year-old the last time they saw me, some ten days before. My older sister spoke politely to me, as did my twin sister. They'd never been polite to me before, and I knew that a chasm had opened between us. How could I explain that the way I felt now was actually
better?
How could they ever know where I had just come from? Suddenly I understood the term
visiting
I was in one place, they were in another, and they were only pausing. We made polite conversation about people at school, from the neighborhood, talked about things entirely inconsequential because it wasn't the subject that counted but the gesture of conversation itself. You could have parsed each sentence not into nouns and verbs but into signs and symbols, artificial reports from a buffer zone none of us really owned or cared to inhabit.

 

My mother was the Visitor Extraordinaire. She'd arrive each afternoon, give me whatever bit of news or information about my health she had as quickly and simply as possible, then sit down in a chair and begin knitting. She'd spend the entire visit knitting. Human presence is the important part of visiting, and she understood that. Her body occupied a space close to my body, but it didn't ask anything of it. Other visitors were more awkward—casual friends of the family who'd stop by and stand over me for long and clumsy minutes, trying to engage me in conversation, when all I wanted was for them to sit down, relax, not say a word.

My father was the worst visitor. He loved puns and would think of a more terrible one each day. But in the awkward silence that followed his rehearsed routine, what should he do then? Sometimes he'd put on a surgical mask and make a joke about Dr. Dad, the same joke I'd seen dozens of other fathers make with their kids. Then, bereft of a vector, he'd sit down and stare intently at the drip of my IV. He could sit like that for a long time, personally coaxing each drop to form and fall. I knew how hard it was for him, and he probably knew how hard it was for me.

On certain afternoons after that first big operation and in later years, I would recognize my father's particular gait far down the hall. He'd come on his lunch break, though he didn't have much time to visit, with his hectic work schedule. We both knew that his visits were slow and sorrowful for both of us and that it was okay for him to come only occasionally. One day I heard his step echoing toward me. Carefully, still not entirely sure what I was intending, I got into bed and closed my eyes. His loud breathing and hard-soled shoes entered the room. Silence stood over me for a minute or two, contemplating. I heard hands fumble around in coat pockets for a minute, the crinkle of paper, a pen covering it with soft thips of sound. Then at once everything was leaving the room, pulling out of it and leaving behind that specific, hollow sound of emptiness. I opened my eyes and read the note I found on my night table. "Lucy, I was here but you were sound asleep. I didn't want to wake you. Love, Daddy." I felt I'd let us both off the hook, yet after that the afternoon seemed interminable, something to be gotten through.

 

Gradually I began to improve. I gained strength, the various tubes were removed, and walking became less of a heroic effort. I still resisted speaking, however, keeping my answers to a simple yes or no when I could not just nod my head. I allowed people to believe speaking was difficult, though my mother knew better and kept at me constantly. One day Mary came in when I was alone and announced very casually that I was much better now, that someone else needed this room and, because there were no beds on this ward, I was to be transferred to the floor above. She left as casually as she had come. It was the first day I'd gotten dressed in regular clothes, a Spiderman shirt someone had brought as a present. A feeling of regret came over me. Perhaps if I hadn't gotten dressed they would still think I was sick enough to stay. A few minutes later an aide came in to help me pack. I excused myself and went into the bathroom, where I was overcome by weeping, the first tears I'd shed since I'd been in the hospital.

How could they throw me out like this? I had come to believe that the nurses there liked me, that they were my special friends, yet now I was just being tossed away. Only then did I begin to realize how accustomed I'd grown to being taken care of. I hadn't even had to wash myself. And as much as I hated to concede any points to my mother, I knew I had become too passive. An ornate surge of grief came over me, too manifold for me to know what I was grieving for. Luckily I tired easily, and the weeping could go on for only a few moments. I wiped my eyes. Ashamed of myself, I went back into the room to help the aide gather my things into a red plastic disposal bag with
WARNING: HAZARDOUS WASTE
written in large black letters across it. My mother had taken my overnight case home early on because it took up too much room.

The new ward was laid out exactly like Ward 10, but it was filled with a different kind of patient. These were teenaged girls who giggled with each other and told jokes that I didn't get about the doctors, especially one Dr. Silverman, whom they all seemed to be in love with. One girl with long black hair and lovely dark eyes sang his name over and over again in a voice I told her was good enough to be on the radio. She looked pleased when I told her this. All of them were skeletally thin; knowing nothing of anorexia, I wondered what was wrong with them. There were no visible scars or signs of illness that I could see, apart from their weight. One of them was so thin she couldn't walk, and the others pushed her about in a wheelchair. Her arms were so thin that her elbows looked like giant swollen lumps, her hands like the oversized hands of someone who has worked long and hard for a lifetime. Though they were older than me, having already entered that mysterious, enviable realm of the teenager, they wore toddler-sized name bands, the only ones small enough to fit their delicate and fragile wrists.

I spent a week on the new ward, but I never committed to making friends there. Derek came up to see me once or twice, but then he too was discharged. My body started orienting itself toward home, feeling stronger and more bored every day. I still had sticky circles on my chest, remnants of the EKG, and my fingertips were covered with small black marks, scars from the daily blood tests, but my body was my own once more. Though I had looked at the scar running down the side of my still swollen face, it hadn't occurred to me to scrutinize how I
looked.
I was missing a section of my jaw, but the extreme swelling, which stayed with me for two months, hid the defect. Before the operation I hadn't had a strong sense of what I looked like anyway. Proud of my tomboy heritage, I'd dogmatically scorned any attempts to look pretty or girlish. A classmate named Karen had once told me I was beautiful, and by the third grade two boys had asked me to be their girlfriend, all of which bewildered me. When Derek had delivered my first actual kiss, his desire had taken me completely by surprise. On the day I finally went home, I felt only proud of my new, dramatic scar and eager to show it off.

 

School was already over for the year. The endlessness of summer stretched out before me, temptingly narcotic. I wasn't allowed to go swimming because the scar on my trachea was still soft and fresh, a pink button on my throat, but I didn't really mind. I was a hero. Neighbors stopped me on the heat-rippled sidewalks to ask how I was. Evan, my closest friend from the neighborhood, and the other boys seemed suitably impressed with my hospital tales (I embellished heartily) and with my coup: I didn't have to make up any of the two months of schoolwork I'd missed.

One afternoon when Evan and I were playing an intricate game of jungle in his living room, his father passed through on his way to the kitchen. Pausing in the doorway for a moment, he turned and addressed me directly. I knew that his wife had died of cancer several years before, but I couldn't have imagined what went through his mind to now see a child with the same disease, the same prospects. He was the first person to mention chemotherapy, and he looked at me steadily and sadly for a minute before asking if I knew what it was. I'd been told I was going to have chemotherapy, but it had been described as simply another drug, another injection, maybe one that would make me a little flushed, no more. I'd had some unpleasant scans involving injected dyes, which had transformed the world into something woozy and hot, but nothing so bad that I felt unable to face it again.

My explanation wasn't what he was expecting, but, unable or unwilling to finish what he'd started, he mentioned something vague about chemical changes in my body, about how my hair might be affected. Having no idea what he was talking about and sensing something serious I'd rather not pursue, I made a joke to Evan about how my hair would turn green, my eyes purple. This was the second time an adult had tried to approach me directly and seriously about my situation, and it was the second time I had turned it around, refused to tackle it.

 

Death had become part of my vocabulary when I was six. The gerbil was the latest in a long line of family pets to die, and with my sister Susie, who was twelve at the time, I was disposing of the body behind the house. Our dog Cassie had died a year or so before, and though I missed her, at the time I had felt confused by Susie's irrational tears and bad tempers in the days afterward. Now the gerbil was also dead, and though I'd had no real attachment to him, I was sorry. He lay on top of a brown paper bag from the A&P, soon to be his final shroud. His fur parted and clumped together in a strange way, the deadest thing about him, and when I touched him I couldn't believe how hard, how cold, he was. Susie picked him up by his tail, and the sunlight suddenly illuminated the dullness of his still open eyes. A strange idea entered my head, an idea so preposterous it couldn't be true. How could it be? Surely Susie would laugh at me for even suggesting it, but I felt I had to make sure anyway, for my own peace of mind.

I paused for a moment, considering how best to phrase it. I went for the negative approach.

"People don't die, do they?"

She looked at me with the surprise I'd hoped for, the faintly amused look that told me my fear was unfounded, but her response became proof positive that one should never ask a twelve-year-old sister
anything
With glee in her voice she commenced to describe in great detail how you went into the cold dark ground, how the skin fell off your bones, how your eyes fell out. In a truly inspired touch, she began singing:

 

The worms crawl in, the worms crawl out,
in your stomach and out your mouth.

 

I don't blame her. I was an easy mark, and had I been in her position I'd have done the same thing. Part of the job of being human is to consistently underestimate our effect on other people, and for the specific job of being a twelve-year-old with a younger sister, cruelty is de rigueur.

As we stood there near the driveway, Susie had no idea what she had just implanted in the deepest part of me. No one had any idea, not my parents or teachers or friends, because there was no way I could discuss it. If the word
death
was even mentioned in my presence, I would collapse. At night I dreamed of being carted off and left alone in a dark, cold room filled with bones, bones that would wake up once I was in there and dance around me. There was a small, dark hole in the steps in front of our house that led nowhere in particular, but in my new dreams it became the gateway to a world that terrified me, a world where people had no heads or, if they did, they were filled with worms and beetles. This was what awaited me, there was no way I was going to escape death, and as the days passed I became more and more frantic. If I saw a movie or television show that involved someone's death, I'd hide under the covers. When a schoolmate I didn't even know died tragically in a fire, I was convinced that I was somehow responsible.

Why had we been born if this was the terrible end we had to look forward to? My six-year-old self was privately obsessed with my terrors and questions, when salvation appeared in the most surprising place—the television show
Laugh-In.
A repeating skit, mixed in with all the sexual and political innuendos that were over my head, was the scenario of a ragged, exhausted man climbing to the top of a large mountain. At the peak sat a man with a long gray beard. The climber would ask the guru, "Oh master, what is the meaning of life?" Of course the answer was always a silly one, usually resulting in the climber's falling off the mountain. I'd seen references to a similar mountain and guru in the cartoon "B.C." Then I saw a National Geographic program that located this mountain, with its guru, in an actual place called Tibet. Immediately I went to my father. He was sitting in the living room, reading on the red couch so accustomed to his body that it obligingly hollowed to hold him more comfortably. After his death I used to curl up into this space and lie there with the cats, the warmth of his physical dent as reassuring as some ghostly hand in my hair.

"Daddy, how much would a plane ticket to Tibet cost?" I asked, offering no explanation for my question.

His eyes went up into his head and he scrunched up his forehead to let me know he was thinking. Looking down at his palm, he pretended to do calculations, muttering to himself. After a minute of this he turned and looked at me as he would an adult. "One million dollars," he announced, as seriously as I had asked him. I thanked him and left. For a six-year-old, one million dollars was about as unintelligible as one hundred, but I decided to start saving. I understood it might take some time, possibly years.