Autobiography of a Face

  My inner life became ever more macabre. Vietnam was still within recent memory, and pictures of the horrors of Cambodia loomed on every TV screen and in every newspaper. I told myself again and again how good I had it in comparison, what a wonder it was to have food and clothes and a home and no one torturing me. I told myself what fools those boys at school were, what stupid, unaware lives they led. How could they assume their own lives were so important? Didn't they know they could lose everything at any moment, that you couldn't take anything good or worthwhile for granted, because pain and cruelty could and would arrive sooner or later? I bombed and starved and persecuted my own suffering right out of existence.

  I had the capacity of imagination to momentarily escape my own pain, and I had the elegance of imagination to teach myself something true regarding the world around me, but I didn't yet have the clarity of imagination to grant myself the complicated and necessary right to suffer. I treated despair in terms of hierarchy: if there was a more important pain in the world, it meant my own was negated. I thought I simply had to accept the fact that I was ugly, and that to feel despair about it was simply wrong.

  Halloween came round again, and even though I was feeling a bit woozy from an injection I'd had a few days before, I begged my mother to let me go out. I put on a plastic witch mask and went out with Teresa. I walked down the streets suddenly bold and free: no one could see my face. I peered through the oval eye slits and did not see one person staring back at me, ready to make fun of my face. I breathed in the condensing, plastic-tainted air behind the mask and thought that I was breathing in normalcy, that this freedom and ease were what the world consisted of, that other people felt it all the time. How could they not? How could they not feel the joy of walking down the street without the threat of being made fun of? Assuming this was how other people felt all the time, I again named my own face as the thing that kept me apart, as the tangible element of what was wrong with my life and with me.

  At home, when I took the mask off, I felt both sad and relieved. Sad because I had felt like a pauper walking for a few brief hours in the clothes of a prince and because I had liked it so much. Relieved because I felt no connection with that kind of happiness: I didn't deserve it and thus I shouldn't want it. It was easier to slip back into my depression and blame my face for everything.

  Hannah was a cleaning woman in Dr. Woolf's office. She was quite old, or at least seemed old to me, and she wore a cardigan summer and winter. Her domain, when she wasn't polishing the hallway floors or disinfecting the metal furniture, was an oblong room off the main doctors' hallway, just a few doors down from Dr. Woolf's. I appreciated this room because it was painted pale blue, so unlike the sickly green that dominated the rest of the place. During the last year of chemotherapy I'd grown considerably weaker, and sometimes walking the few blocks to the parking lot after the injection seemed an insurmountable task. On particularly bad days my mother would leave me in Hannah's care while she went to fetch the car. Hannah would sit me down in a chair next to a small table with a kettle and some cups on it, her own small island where she took breaks.

  The routine never varied. She knelt in front of me and asked, "How do you feel?" I could hear her slip rubbing between her stockings and dress. Looking her straight in the eye I'd confidentially report, "My nose hurts."

  It was always such a relief to be able to admit this to her. I later learned why the chemo affected my sinuses, but as far as I could tell, Hannah was the only one who believed this comic complaint. She'd nod sympathetically and offer me a cup of tea, and I would politely refuse. Then we would sit and stare at each other, waiting for my mother to return. I knew that beyond a cup of tea, there was nothing she could offer me. But her gaze soothed me. Normally I despised the looks of others, but with Hannah I felt a vague sense of camaraderie, imagining that both our little lives were made miserable by these unknowing, cloddish doctors. To her I was probably just one of the many sick children who streamed in and out of the place, but in my mind I'd found a silent link with someone whose life was as difficult as I found my own. As ill as I felt, I always liked sitting there with her, imagining our parallel lives clicking quietly along like two trains beside each other, with similar routes but different destinations.

  When I played with Jan or Teresa, my friends from that time now indelibly labeled Before, they treated me the same way they always had, though perhaps with an air of delicacy that seemed uncomfortable and unnatural for all of us. They asked me questions about the physical effects of my treatment—how much it hurt, why I was so skinny, when my hair would grow back. I loved to answer with vigor and embellishment. A third of my answers were shaped by the braggarts love of a good tale, another third by my instinctive knowledge that they'd never understand what it was really like, and a third by my own unawareness of what it was like a great deal of the time. I witnessed my life unfolding like someone who has awkwardly stumbled in after the movie has started. I sensed that something important had been revealed in the opening sequence, some essential knowledge everyone else was privy to that was being kept from me.

  I could converse with well-intentioned neighbors, go the usual round of polite questions about my health, though I was highly aware of how different these conversations were from the ones with my friends on Ward 10, my friends from After. People who weren't ill or involved in the daily flow of hospital life had their own ideas of what it was like to be ill. It seemed impossible to tell them how it really was, and I didn't particularly want to do so. I preferred to have strangers on the street imagine me as sickly, confident that as soon as I was back on Ward 10 my friends and I would redefine for each other what it was like to be sick.

  I felt as if my illness were a blanket the world had thrown over me; all that could be seen from the outside was an indistinguishable lump. And somehow I transformed that blanket into a tent, beneath which I almost happily set up camp. I had no sense of how my life was supposed to be, only of how it was. Not that this meant I was actually happy, not in any normal definition of the word. Though I depended on my apocalyptic thoughts to keep my situation in perspective, they did imbue me with a rather depressed aura. "For God's sake, stop looking so morbid all the time" became a familiar phrase in my house. Whenever anyone else was present I felt incapable of being anything other than a depressed lump. It was only when I was alone that my ability to relish life surfaced.

  Each week, with the first glimmer of returning strength after the days of vomiting, I discovered that, for me, joy could be measured in negative terms: of what I didn't have, which was pain and weakness. My greatest happiness wasn't acquired through effort but was something I already had, deep and sonorous inside of me, found through a process of removing the walls of pain around it. I knew the walls were inside of me, and I saw that most people, never having experienced deep physical discomfort on a regular basis, didn't, couldn't, know this.

  I viewed other people both critically and sympathetically. Why couldn't they just stop complaining so much, just let go and see how good they actually had it? Everyone seemed to be waiting for something to happen that would allow them to move forward, waiting for some shadowy future moment to begin their lives in earnest. Everybody, from my mother to the characters I read about in books (who were as actual and important as real people to me), was always looking at someone else's life and envying it, wishing to occupy it. I wanted them to stop, to see how much they had already, how they had their health and their strength. I imagined how my life would be if I had half their fortune. Then I would catch myself, guilty of exactly the thing I was accusing others of. As clear-headed as I was, sometimes I felt that the only reason for this clarity was to see how hypocritically I lived my own life.

  Once, during a week of intensive chemotherapy toward the end of the two and a half years, I was sent to another ward, as 10 was already full when I checked in. My roommate was a girl who'd been run over by an iceboat; the blades had cut her intestines in two, and she'd had to have them sewn back toge
ther. She got a lot of attention, lots of calls from concerned relatives and school friends, and I was both a little jealous of her and a little contemptuous because she was taking her accident a bit too seriously for my taste. After all, she'd lived, hadn't she? She'd had one operation and they might do another one the next week, but after that it would all be over, so what was the big fuss about?

  It was late at night, always a bad time in the hospital, but especially on this ward, which I'd been on before and which was notoriously understaffed. Often there was only one nurse and a handful of aides to take care of everyone. This was particularly bad news if you had an IV. They were still using butterfly needles instead of the flexible catheter-type needles they have today. The needle was inserted into the back of your hand and simply taped down to the skin. The chances of it puncturing the vein were high, and I'd learned to keep that hand absolutely still, even in my sleep. Worse, however, the limited staff often neglected to refill the IV bottles regularly and they would dry up in the night, causing the needle to clot with blood. Many nights I had to be woken three or four times in order to be restuck with a new butterfly. My veins were so tired that often it took three, four, even five sticks before the doctor, who was never happy to be woken for the menial task of setting up an IV, could get the fluid to flow properly. I learned not only to sleep without moving, for fear of hitting the needle out of place, but also to sleep in two-hour shifts so that I could wake up and check the bottle's fluid level myself.

  This particular night I woke up on that strange ward and looked at the bottle in the blocks of light coming in through the city window. To my relief it was still half full. The light coming in passed through the clear solution and threw a marbled reflection down on the floor. I had to go to the bathroom. I tried to assess if I could walk the few feet unaided and decided I couldn't. Pressing the call button for a nurse, I sighed, realizing it wasn't a buzzer system, as they had on other floors, but simply a bulb that would light up over my door in the hallway. Chances were good that no one would see it for some time. I waited. I waited and waited and even tried calling out, but my voice couldn't carry that far. My roommate slept soundly, still heavily sedated from her operation that morning. I saw her open mouth, her fat cheeks, her whole face turned upward toward the ceiling as her thick, curly hair fell to the side.

  She'd spent all of yesterday's dinnertime telling me about her parents' divorce, about how her father came to get her each weekend and always took her to do something. This weekend they had gone ice sailing. She spoke of it in a passive yet unhappy voice. While she was in surgery I listened to her mother fight with her rather, accusing him of causing the accident. He yelled back at her and, in my mind, won. They all seemed very impressed with the complications of their lives, with their divorce and their fights and their daughter, who commanded the divided attention of her parents. Who would ever understand how jealous I was?

  I kept waiting to see if a nurse would come. How much time passed I don't know, but I had to make a decision: get up and walk or pee in the bed, as I'd done once before in a similar situation. For a brief time during my father's unemployment I'd gone on Medicaid and had been sent to a completely different part of the hospital, to a gigantic open ward that was disturbingly understaffed. I called and called for a nurse or an aide, but finally I couldn't stand it any longer and, with great relief, let go and peed right there in the bed. I had to lie in it until it was cold and had spread through all of the sheets before an aide finally, almost comically, walked in with a bedpan. She looked at me disapprovingly and said she'd send someone to change my sheets. Ten minutes later a woman showed up and looked at me in surprise. She asked me how old I was, and I told her eleven. She shook her head and said that when she heard someone had peed in the bed, she thought it must have been a baby.

  I wasn't going to go through that embarrassment again. All I had to do was be strong, I told myself, and I could make it to the bathroom. Sitting up wasn't hard at all. Slipping down to the floor was fine as long as I did it slowly. Grabbing hold of my IV pole, which was on the wrong side of the bed, adding extra length to the journey, I began the seven or eight feet to the bathroom. I passed the foot of my bed. Even at this hour, traffic was still audible outside. My roommate breathed heavily, almost snoring but not quite, while my IV swayed and clinked against the metal pole as I pushed it along. I neared the foot of her bed and had almost passed it when I understood I would never make it. I was exhausted. I had to sit down, but the one chair in the room was even farther away than the bathroom or my bed. Tiredness and a creeping ache so overwhelmed me that I forgot I even had to go to the bathroom. Could I make it back to my bed? It was too far. Suddenly afraid I was going to faint, I crouched down to the floor, aware that I was adopting the pose of the crouched skeletal figures in the countless famine pictures I studied so hard in news magazines. I'm okay, I told myself, I'm okay.

  I thought that if I could just rest like that for long enough, I'd regain the strength to make it back to bed. The five feet might as well have been five miles. My knees began to ache, and afraid that I might fall even from this crouch position and dislodge the IV, I gingerly lay down on the floor. My hipbones and elbows hurt against the hard floor. If I lay here long enough, would someone come by and see me? After all, my call light was still on. What would they think, seeing me lying here? Maybe they'd feel sorry for me, maybe they'd sweep me up in their arms place me back in bed and lay a comforting hand across my forehead, whisper something sweet and consoling in my ear.

  Until that moment I had believed in the drama of my life, the dramatic possibilities my tragedy called up. But now the floor was cold. The floor was just so cold. I didn't want to lie there anymore, and even though it would take a Herculean effort to ease myself back up, I didn't want to wait anymore for someone to come rescue me. I suddenly had a glimmer of what the person had meant when he scratched that message into the bathroom door eleven floors below: Be Here Now. I felt a bottomless sense of peace, of stillness. I decided it was simply a matter of will, that if I really concentrated I could make it back. And I did. It took a long time and I don't remember anything once I was back in bed. I must have fallen asleep immediately, only to be woken from a deep sleep a little while later by an aide, answering my call light at last.

  "Do you realize this is the last six weeks?" my mother asked late one Thursday afternoon while starting to prepare dinner.

  "What?"

  "The last set of shots. Only six more, and then all this will be over. What a relief. You must be overjoyed."

  I was shocked. Over? It was almost over? I looked at her, speechless. "Thank God for that," I said, using a phrase she employed all the time.

  I went down to my room and lay on my bed, utterly confused. Why wasn't I overjoyed? I was almost thirteen years old. I'd been doing this since I was ten; I barely remembered what life had been like before. No more shots, no more Dr. Woolf, no more throwing up. I was afraid, and I was afraid that I was afraid. Why wasn't I happy, the way I was supposed to be? What was wrong with me? I didn't want it to continue, did I? No, I knew I didn't, but life after chemo seemed unimaginable. Bewilderment filled the room. As hard as it was to admit this to myself, I was afraid of it ending, of everything changing. I wouldn't be special anymore; no one would love me. Without the arena of chemotherapy in which to prove myself, how would anyone know I was worthy of love? But how could I ever want it to go on? I lay there turning these things over and over in my mind, more perplexed than I'd ever been in my life.

  Counting off the days became an obsession. Thirty-eight more days until the last shot. Thirty-two more days. Fifteen more days. Three days and eighteen hours. Forty-eight hours and nineteen minutes. Three hours. Sixteen minutes. Now. I walked into Dr. Woolf's office, and it didn't seem in any way special or different. It was a bit gray outside, a bit chilly, but not exactly cold. Dr. Woolf was all business as usual, on the phone, talking in five different directions at once. For only the second time I looked at the syrin
ges in the basin. There were two of them, and one was filled with a bright red solution the color of Kool Aid. I watched him attach the needles, watched him walk carelessly around the room with them, still on the phone but to someone different now. Then he put the phone down and put the tourniquet on and rubbed my arm with cotton ball, the smell of rubbing alcohol filling the air. As usual, it took a few stabs to find a vein, but the third one worked.

  The hot flashes came, followed by the familiar nausea, and I painfully retched up nothing but the single Thorazine pill I'd been given an hour before. It was meant to help the vomiting, but every week I only threw it up, and there it was again, half dissolved, pinging into the basin. Slowly I realized that I wasn't crying. These last few months I had hardly cried at all: it wasn't that I actually cried less but that I controlled it more. Not crying had become the goal of my visits to the chemotherapy clinic. But now I felt absolutely nothing. My mother was praising me for being so good. I looked at her and at the beautiful window behind her. Robotically, I looked back to my arm, to Dr. Woolf's huge hands changing syringes. Nothing. I felt only a void. Even the usual pain floated around me. It seemed to belong more to the room than to me, and even then awkwardly, like a clumsy piece of furniture.

  Then it was over. My mother and Dr. Woolf were talking. I couldn't hear them, though they were right next to me. I was looking at the ceiling. It was peeling, and there was a water stain just off to the right. Funny, I thought to myself, all that time looking around and never noticing the ceiling. Had I never looked at it, or had I looked at it dozens of times, only now really seeing it? My mother finished speaking with Dr. Woolf and turned toward me; then she, too, before helping me off the table, wordlessly looked up for a moment, following my gaze.