Autobiography of a Face

by Lucy Grealy

  We pushed open the doors and found ourselves in a large room. Equipment of various sorts lined the walls, and in the middle stood four interlocking pens with metal poles for sides. In two of the pens were pigs, and in the other two, sheep. They had no bedding, and the concrete floor, dribbled with urine, sloped downward toward a system of drains. My first thought was, how can they sleep on concrete? The animals had been lying down, but our entrance startled them. They stood up, the sheep bleating hoarsely and the pigs harumphing, very human-sounding, and circled the tight interior of their pens. I'd never been so close to pigs before, and these were enormous. Pigs have human eyes, blue, with round pupils. After staring at you they look away, and you can see the whites of their eyes. Counter to every feeling I'd ever had about an animal before, I had no desire to go nearer.

  We all just stood there in the doorway. Surely things were said, but I don't remember any conversation. As the sheep paced around I noticed that patches of fleece had been shaved away in raw geometries, framed for recently sutured incisions. One of the sheep had what looked like a plastic bag sewn into her side. We stepped back out and went into the next room, where dogs had started barking. Haifa dozen beagles in reasonably large cages greeted us joyously. One of the dogs looked unhappy and sick and ignored us, but the rest pushed with all their weight against their bars as we approached. As I neared the first one's cage, however, he stopped barking and growled at me. The candy striper heard and warned me not to get any closer to the dogs, most of whom looked desperate for attention. All of a sudden I hated her, with her stupid outfit and shrill, silly voice.

  Desperation saturated the room in those loud, whining cries pacing back and forth, back and forth, back and forth. I was overwhelmed. On each cage door was a sign with handwritten details about the dog, filled with alien words. Instead of water dishes they had bottles with tubes they could lick, giant versions of what my gerbils used back home. Despite the warning, I let the dogs lick my fingers through the bars.

  The tenor of the expedition was shifting rapidly, taking on a slow, almost viscous quality. Out teenaged grownup tried to hurry us along, now aware that she'd made a mistake. The next room was lined with cages. The wall directly across from the door was filled with cages of white mice, and to our right was an entire wall of cats, cage after cage stacked upon each other. Most were tabbies. I'd never seen so many cats in one place, and yet it was eerily silent. They crouched in their cages and stared at us, every single one of them, as we filed into the room. As we got closer, some of them came up to the bars of their cages and rubbed, opening their mouths soundlessly. Years later I learned that it is not uncommon to cut the vocal cords of laboratory cats, especially if there are a lot of them. They had the same water bottles and handwritten signs as the beagles, but their cages were smaller. A number of the cats had matchbox-size rectangles with electrical wires implanted in their skulls. The skin on their shaved scalps was crusty and red where it joined the metal.

  It was too much now. There was a sound of monkeys in the next room, but we turned and left. In the elevator no one spoke; in the tunnels no one spoke. A sad, groping presence accompanied us all the way back to the ward, where the lunch trays were just arriving and the aroma of spaghetti filled the halls. When asked where we'd been, our candy striper replied casually that we'd gone for a walk, and not one of us said anything to the contrary. Sooner or later we all have to learn the words with which to name our own private losses, but then we just stood there in front of the nurses' desk, speechless.

  THREE

  The Tao of Laugh-In

  NO ONE CLEARLY EXPLAINED TO ME WHAT WAS about to happen. Mary, the head nurse, did call me over at one point. Derek tagged along. The floors had just been polished, and the lemon scent of wax filled the air. Mary was one of my favorite nurses, always kind and always the one most likely to crack a joke as she walked into the room with that dreaded basin, the one they carried needles in. Though I didn't mind blood tests, I'd developed a fear of preop injections.

  By now I'd had three operations, including a bone biopsy. Usually they gave two injections before taking you down to the O.R., one for each thigh, and the shots hurt like bad leg cramps for several minutes. Most nurses offered the hearty and useless advice of Rub that spot hard! or Squeeze your toes!, but not Mary. She'd stand over you, needle poised, and announce her own joking version of comfort, mimicking the syrupy tone neophyte inflicters commonly resort to: Now this isn't going to hurt me one little bit.

  I specifically asked Mary if she'd give me the injection before my fourth operation, the one that involved removing the tumor and no more than one third of the jaw. She seemed disappointed when she told me that she wouldn't be on duty for it. Late that afternoon, before she left, she called me over. "This is a big operation you'll have tomorrow, you know that, don't you?"

  I'd been told it would take a whole four hours, which was certain to elevate my social status on the ward. Though I'd felt sick after my other encounters with anesthetics, I didn't comprehend what a four-hour surgery would mean. Somewhat chagrined at being spoken down to, I told her I understood everything perfectly, unaware that I hadn't a clue how sick I was or what was going to happen.

  She looked me right in the eye. "Do you know you'll look different afterward?"

  For Derek's sake, I made a joke about bandages, about looking like The Mummy. Horror movies were a major source of entertainment for Derek and me. Between us we'd seen every bad monster movie ever made, and we had serious arguments as to whether or not Camera, a giant Japanese turtle, could win over Rodin, another Japanese creature with a pterodactyl look. Mary realized she wasn't getting anywhere with me. She shifted her weight, looked down, and let her shoe slip halfway off her foot to dangle on the edge of her toes. After a few moments of contemplating this effect, she put her weight back on the foot. I could hear the stockings rasp together on her thighs as she left.

  The next afternoon, when I woke up in Recovery, I couldn't quite figure out where I was or what had happened to me. My entire body ached, and when I tried to speak, nothing happened. An elderly, overweight nurse approached my head from time to time with a long, clear plastic tube, which seemed to disappear just as a deep ache appeared in my lungs. I didn't realize I had had a tracheotomy. There was a constant loud sound of machines, and at one point I amused the nurses, who showed me how to speak by placing a finger over the hole in my throat, by asking if they could turn them off so I could get some decent sleep. My parents came in together for a minute, stood at the foot of the bed, and considered me from what seemed a long, long way away.

  With no room in ICU, they decided to keep me overnight in Recovery. I held my hand over my throat, over my newest orifice, and felt my breath brush warm, almost hot, over the moist plane of my palm. The steady flutter didn't seem to have anything to do with me. For the first few hours I vomited up large amounts of blood I'd swallowed during the procedure. I began to welcome the deep, lungy urge to release the sweet-tasting fluid from deep within me. It tasted almost pleasant. Drainage tubes drifted down onto the pillow beside me, displaying the slightly shifting red and golden fluids of my body. An IV hung over me, dripping steadily and endlessly, producing a hypnotic effect similar to that of the watery chaos I'd been drawn to off the stern of the Queen Mary. If I lay perfectly still, I felt no pain. I dozed and woke, dozed and woke all night, slept my half-sleep with an image of myself as swaddled.

  Bizarrely, after they removed half my jaw, I limped. It was my first day up out of bed, and I was going to traverse the entire four feet to the bathroom. This required a certain amount of preparation, of disconnecting tubes and wires.

  "Why are you limping? They didn't do anything to your legs, Chicken-chops."

  My mother was watching the nurse help me. I liked it when she called me Chicken-chops, the name she used with any of us when we were ill. I was back on Ward to, not only in my own room but with my own nurses around the clock. Most of them simply sat beside my bed and read, but the on
e that day liked to turn the television on without volume and chuckle at it continuously. Underdog wavered on the screen behind my mother as she put down her knitting to view the spectacle of my first journey out of bed. I placed my finger over my throat.

  "I don't know."

  It was everything I could do just to say those three words. My non sequitur limping seemed to amuse the nurse and my mother, and eventually it amused me. None of us understood that the body is a connected thing.

  Fluid was the major issue. I refused to drink enough. Or, rather, that's how they perceived my inability to down more than a quarter of a glass at a time. Every swallow left me breathless, two swallows exhausted me, three and then four made me feel I should be congratulated. Instead they made an embarrassing chart and pinned it on the door, a Magic Marker record of every cc I consumed. They thought the threats to never take out my IV would impel me, but they misjudged. I gladly would have spent the rest of my life on an IV if they would just leave me alone.

  Day after day passed, and still I could barely manage a fraction of the ten glasses a day they wanted of me. Ten glasses! An unimaginable sum! Couldn't they see that? I knew my mother was getting annoyed with me, beginning to take it personally. How could I explain that I just wanted to lie there, becoming ever more intimate with my body?

  I knew all of my body's rhythms now, all of its quirks. The smell of my wound was sweet and ever-present, the skin on my elbows and heels as sore and red as holly berries. Though at first I'd dreaded the daily injections, now I didn't even mind them, welcomed the dozy contentedness they offered. I learned that all I had to do was relax, that fear was the worst part. I became a machine for disassembling fear. Even the worst pains could be rendered harmless if you relaxed into them, didn't fight. I grew lazy about speaking, and even after I was given a full-time plug for my trachea, I put little effort into speaking, reducing my vocabulary to only syllables at a time, passing them out as cautiously as I did my attempts to drink the most minute amounts of water. I grew weaker and weaker.

  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.