Autobiography of a Face (15 page)

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 syringes 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.

She went off to get the car, and I was ushered into Hannah's room. "How do you feel?" she asked. I began to cry. Just a little bit at first, but soon I was sobbing and my whole body was shaking. I tried to stop, but it was out of control, and I gave myself over to it. Hannah bent over and put an arm on my shoulder for a second, only for a second, then withdrew it and straightened up. She stood there for a few moments holding her hands together over her stomach, then, without asking, busied herself making me the cup of tea she'd been offering me for years. Through my sobs, which were getting loud now, I heard the water rattle and hiss inside the electric kettle. My lungs were already filled with sorrow, and though I didn't think it was possible, I cried even harder.

A few minutes later, Hannah handed me the tea in a mug with a picture of the Statue of Liberty on it. Holding the hot mug in my hands, I cried just as hard, though conscious now that I mustn't spill the tea. My head was pounding. Slowly the crying began to stop. I felt so tired all of a sudden, but quietly tired, in a restful way, not the usual exhaustion. By the time my mother returned, I had stopped, not because of any effort on my part but because the crying had run its course. We said good-bye to Hannah and walked out. No one on the streets, bending their heads down into the cold wind, seemed to notice or care that this day was different from others.

ONE DAY, WHEN I HAD A FULL THREE OR FOUR INCHES
of hair, I was leaving the house with Susie. At the last minute I turned and ran back up the stairs, calling out, "Just a minute while I get my hat."

"You don't need it anymore, Lucy, your hair is fine, come on already," she called back to me, frustrated that we were going to be late.

I stopped in the middle of the stairs and, genuinely surprised, considered what she had said. Running my fingers through my hair, I had to admit she was more or less right. It wasn't nearly as long as it used to be, but I wasn't bald. I went out with her into the world, bareheaded for the first time in years. A warm and gusty breeze parted my hair and stroked it like a caress. We went to the store, and people gave me second looks as they always did, but not one person called me Baldy.

The next day I went to school bareheaded, and no one mentioned it. Had I been wrong in thinking that I needed to hide behind my hat, had it all been a mistake on my part? Except people still looked at me. Though I had given up eating in the lunchroom, there were plenty of relentless daily attacks of teasing in the hallways. Girls never teased me, but out of the corner of my eye I could see them stating at me, and when I turned toward them, they glanced away quickly, trying to pretend they were concentrating on something else. Outside of school I'd catch adults staring at me all the time. I played games with them in stores, positioning myself just so and pretending I was absorbed in examining some piece of merchandise, only to turn my head quickly and trap them as they averted their embarrassed stares. Groups of boys were what I most feared, and I gladly ducked into an empty doorway if I saw a group coming my way that looked like trouble. It was easy to spot potential offenders: they walked with a certain swagger, a certain sway.

 

My relief—tinged with regret—at leaving the familiar and well-ordered world of the hospital didn't last very long. The radiation had been very hard on my teeth, the lower ones especially, and saving them would require a lot of specialized work. Only a few short months after I naively thought I'd said good-bye to Columbia Presbyterian Hospital forever, we had to again start the routine of driving in once or twice a week for what turned out to be two years of dental work. The dental clinic was in a completely different part of the hospital, though we still walked through the courtyard that Dr. Woolf's office looked out onto. The hospital laundry was somewhere nearby, and the smell of it, which I associated with the walk to Dr. Woolf's, never failed to make me a little bit queasy.

There was, however, the benefit of getting out of school. By now I hated school with a vengeance and continually told lies about my health in order to stay away. Anything just to not have to face those boys each day. Luckily, my mother was fairly compliant; looking back, I wonder that I was allowed to pass into the eighth grade at all with my attendance record.

The various procedures, including at least a dozen root canals, kept me in pain most of the time. Codeine was prescribed. We kept the refillable prescription bottle in a kitchen cabinet, and within a short while I was taking pills almost constantly, even when I wasn't in pain. I looked forward to the pleasant, sleepy feeling they offered. No matter how bad I felt about the world, about my position in it, I felt safe and secure and even rather happy thirty or forty minutes after I'd downed a couple of pills. As the months wore on and that pleasant effect became harder to achieve, as each pill seemed to touch the pain less, I started taking more and more pills. I was aware that I was taking more than I should, up to four times the regular dose, and I would alternately ask my mother and then my father to refill the prescription in order to keep my high consumption less conspicuous. They both noticed that the pills seemed to be disappearing quickly, but they assumed my brothers were pilfering them. All of this came to an abrupt end one day when my mother caught me shaking out no less than six times the prescribed number of pills into my palm. From then on I had to make do with aspirin.

My inability to open my mouth very wide caused a lot of problems whenever anyone wanted to work on my back teeth, and it was decided that I should be admitted to the hospital and have a whole slew of work done all at once under general anesthesia. This idea was fine by me. Not only did it offer even more days off from school, but the thought of surgery seemed far more appealing than sitting wide awake in that dreadful dentist's chair.

This was my fifth operation, a number that seemed high at the time. On the morning of the operation, an aide woke me early and tossed a surgical gown and a small bottle of Betadine onto my bed. I was to wash my whole body and my hair with this iodine solution, put on the gown, and then wait in bed until the nurses came with the pre-op injection needles. This was the worst part of all. The waiting felt endless, crowded with an unspoken dialogue inside my head concerning the nature of pain.

It gave me pleasure to think that the boys who teased me openly at school and the adults who stared at me covertly elsewhere would never be able to stand this pain, that they would crumple. My whole body was tense and my stomach upside down, but I was convinced that because I did not admit these things, did not display them for others to see, it meant I had a chance at
really
being brave, not just pretending. Every time I heard footfalls coming down the hall, fear's physical rush swelled inside me, and as the footfalls passed my room, a physical sense of relief came over me. These false alarms, however, only heightened my fear, knowing that sooner or later the approaching steps would really be for me.

When the moment came, a student nurse gripped my hand tightly, almost too tightly, squeezing the blood from my fingers, as a regular nurse injected my thighs with the premed. Paradoxically, the moment after the injection, which made my thighs ache and sting, came as a relief; every tension fell and floated prettily away like leaves from an autumn tree. As the minutes passed, the sweet and strange comfort of the medication lifted me up and floated me around the room, and when the orderly finally arrived and asked me to slide over onto the stretcher, I felt as if I were watching someone else shyly try to hold the short gown down over her legs as she awkwardly wiggled along the rough sheets.

When the operation was over I remember throwing up some swallowed blood and feeling terribly weak, though joyously relieved it was all over. In post-op the specially trained nurses checked on me every ten minutes. I was too groggy to sense what was going on, but I relished the aura of attention, the cool hands on my warm arms, the way my name distantly sounded in their soft, I-won't-let-anything-bad-happen-to-you voices, the notion that I was somehow special, that I mattered. But afterward, back in my room, I dozed and waked for hours, each time more panicked than before at being all alone. I'd make up some excuse to ring for a nurse, just to have someone enter the room. I began to wish that the operation weren't over, that I was still asleep on the stretcher with a crowd of people hovering near me.

Later, as I underwent more and more operations, even when I was home in my own bed, upset about how much I hated my face, I could put myself to sleep by imagining myself lying on a stretcher. I could almost hear the movements of strangers in comfortingly familiar uniforms all around me, the distant beeps that were really heartbeats, the mechanical shushes of respirators, which meant someone, somewhere near, was breathing.

It wasn't without a certain amount of shame that I took this kind of emotional comfort from surgery: after all, it was a bad thing to have an operation, wasn't it? Was there something wrong with me that I should find such comfort in being taken care of so? Did it mean I
liked
having operations and thus that I deserved them?