by Lucy Grealy
Just before my father had gone into the hospital, he'd bought an expensive hand-tailored suit, and he'd joined a record club, which began sending recordings of Beethoven's complete works. The fancy suit that he'd been so proud of—the source of a fight between him and my mother because of its price—hung unworn in his closet. And each week a new selection of records arrived, wrapped in plastic, which we piled unopened next to the phonograph in the living room.
My father's bedroom was a disaster area, filled with stray papers and dirty socks and odd cups and occasional forks. I went in and surveyed it all just as I'd done when I was younger and he was away at work, but now I was looking for something else. I had no idea what. Before, I'd wanted some kind of clue as to what it was to be my father, what it was to be a man, to be an adult. Now I was looking for something that would explain my father's life to me. I couldn't find it.
Back in the living room, I could no longer bear the sight of the unopened records. Ripping the plastic off, I put on one after another of the records and listened for five or six hours. I wanted to see why my father loved Beethoven so much. Finally I fell asleep lying there on the carpet; I was awakened by the dogs barking at my mother's return. Hurriedly, I put the records away. I'm not sure why, but I didn't want anyone to know I'd listened to them.
The whole time he was in the hospital, I went to visit my father only once. Even after all these years, I don't understand why we stayed away. Were we so adrift in our own sea of grief that we were able to convince outselves that it was better this way? He grew more and more disoriented. My mother reported that he kept pointing to a pin she wore, a pin he'd bought for her before they were married, pointing to it as if he were picking it out again for the first time. He became paranoid, talking about Germans and the dogs the Germans had set on him when he was a prisoner of war during the Second World War. He'd been a pilot in the RAF, and we had a dashing, fuzzy photo of him in his flak suit, smiling at an unseen person casting a shadow near his feet. It was easy to forget about that part of my father's life because he never spoke of it. I remember once watching Hogan's Heroes while he was in the room. He was appalled that a television comedy would be set in a German POW camp. Knowing nothing of his war experience at the time, I told him I thought he was overreacting. It pained me to think that now, near the end of his life, he was reliving this nightmare, as alone as he had been the first time. We spent the next couple of weeks waiting. Every time the phone rang, the whole house went silent.
I was dreading the inevitable phone call, mostly because I did not want to see the rest of my family's reactions to it. I knew that Sarah would break down and cry, but I didn't know what everyone else would do. I wanted my father to die and for there to be no fuss, no outbreaks, no displays. I was terrified.
When the call did come at last, one afternoon some six weeks before my sixteenth birthday, my mother was on the phone at the far end of the kitchen, my brother Nicholas was sitting at one end of the table, Sarah was sitting at the other end, and I was standing in the doorway. Susie was away at college and Sean was living in California. Sarah, Nicholas, and I remained motionless as we listened to my mother speak, thanking the doctor for all he had done, and when she got off she told us matter-of-factly and very sadly what we already knew. To my great surprise, it wasn't Sarah who cried but Nicholas. He put his head down on the table and wept, and all I could think of was that I didn't expect this, just as I didn't expect Sarah to sit there so calmly. I turned my head and looked at the painting on the wall next to me. It was a head of Christ painted by Sean, one I'd passed several thousand times, yet I felt I was seeing it for the first time. I'd never noticed how much brown he'd used in the thorns, how much gold for the skin. It all seemed so very odd, so very distant, and I was reminded how I'd seen the ceiling in Dr. Woolf's office so clearly that last day there. Was this feeling that everything was happening for the first time real, did grief heighten vision, or was it only an illusion, a way to distance myself from what was happening?
Along with sadness, a sense of relief followed my father's death. At least we weren't waiting anymore. Also we were going to receive some money from the insurance company, and the prospect of paying off some bills and finally getting ahead offered a guilty sense of pleasure. I was sitting in the kitchen a couple of days after my dad's funeral. Perhaps we were still in shock, but Sarah and I were laughing hysterically over a new joke we'd heard, and just as we were in the thick of it, the phone rang. It was my surgeon, Dr. Baker. I was shocked to hear his voice, for he was nothing less than a monumental figure in my life, but when he offered his condolences, all I could do was jauntily reply, as if he'd just apologized for stepping on my shoe, "Oh, that's all right, it doesn't matter." As soon as I hung up the phone I realized what I'd done. But as I told Sarah about the call, the two of us burst out again in uncontrollable laughter.
That June, a few weeks after my sixteenth birthday, I went into New York University Medical Center for my first reconstructive operation, my first microvascularized free flap. I liked this hospital: it was newer and better staffed than Columbia Presbyterian, and I was no longer relegated to the children's ward. My ward was devoted solely to plastic surgery, and I was shocked to see how many people were having their noses done, their faces lifted.
The woman in the bed next to me was having her breast reconstructed after a mastectomy, and she insisted on telling me all about her scars and her feelings of ugliness. I had no patience with her lament: her face was beautiful, and she had a husband who brought her a dozen red roses. It was true she was missing a breast, but I didn't see how that mattered as long as she had these other things. No one could see her missing breast when she walked down the street, no one would make fun of her or think she was ugly, and someone loved her. I listened to her and realized that she was genuinely suffering, that her feelings of ugliness consumed her as much as mine consumed me, but she was mistaken, I thought, for there was no doubt she was beautiful. Her problems lay in her perception. Talking with her only strengthened my conviction of the importance in this world of having a beautiful face. Still, I liked her, and I liked being treated as an adult by another adult. We ordered out for Chinese food for what I kept calling "my last meal." "No, no, don't say that," she tried to reassure me. I just couldn't get her to see that I was joking; I could tell she was new at this hospital stuff.
The anesthetist came to see me that night and decided that it might be hard to intubate me—insert a breathing tube into my windpipe—so he would do it while I was awake. It didn't sound like a big deal, and I didn't think twice about it.
The next morning, however, as I lay dazed on the stretcher, I heard them talking about nasal intubation. Immediately I started worrying, and for good reason. First they tried passing a tube up one nostril. It didn't hurt, but when it reached the back of my throat I gagged. Worse, they kept prying my mouth open to see where it was going. They couldn't reach it, so they pulled it out and tried the other nostril. By now I was upset, but I lay as still as I could. That nostril didn't work either, so they decided to go straight through my mouth. This required prying my mouth open and keeping it open, which hurt like hell, but worse was that at each attempt to pass the tube, my airway was temporarily blocked and I couldn't breathe, which put me into a panic. The pre-op medications were slowing my reactions and making it hard for me to understand what was going on.
I instinctively started to struggle, reaching up and trying to push their strangling hands away from me. When two nurses came and held me down, I started to cry and struggle even more, but they only held me tighter and kept pushing the tube down my throat. They must have sedated me even further, because my reactions grew more sluggish and all reality ceased to exist outside of the confines of my stretcher. I begged them to stop, but no one responded. This upset me most of all. No one cared, or seemed to, and I wailed even louder.
Suddenly everyone seemed to disappear and I was left in peace, floating, but still crying hard. I looked up and there was Dr.
Baker, looking down at me. He reached out his hand and placed it on my forehead, replicating the gesture I'd received during my very first operation. I was calmed instantly, as if all my sorrows existed within that one single point on my forehead. I remember having a surreal vision of myself as if I were a bystander in the room, looking at the clownish cap they'd made me wear to hold back my hair, the clear, greenish tube arching awkwardly out of my mouth, and then I was asleep.
When I awoke I was in a lot of pain, but the pain was in my hip, where the graft came from, far away from my face, my "self," so it was easier to deal with. As soon as I remembered why I'd had an operation, I reached up to touch my face. I felt a large, warm, very soft mass where there used to be an indent. I felt a complicated trail of stitches, and near my ear was a drain. Turning my head, I tried to see my reflection in the metal bed rails, but I could only glimpse a distorted image of something I didn't recognize as my own face. When my mother came to visit, she asked how I felt and I responded with a question.
"What does it look like?"
"Well, dear, it's a bit hard to tell. It's very swollen."
"But do you think it will be all right?"
"Well, he's definitely filled it out. But it's so swollen now, you have to wait and see."
I didn't want to wait. After she had gone I asked a nurse to describe it to me. "You have to understand that it's very swollen and bruised. It will change." I asked for a mirror. Sitting up was too painful, so I lay there and held the mirror above me, staring up at an image I only vaguely recognized. "Swollen" was an understatement. This new thing on my face was huge, almost touching my collarbone. What repulsed me most was a large strip of foreign skin, much paler than my facial skin, running along the lower half of my new jaw line. Surrounded by dozens of minute stitches, it looked just like what it was, a patch. The rest of my face looked horrible as well, all pale and puffy, and my hair was full of dried blood. I handed the mirror back to the nurse, thanked her, and went back to sleep.
When I woke up again I tried not to think about my face. I tried to remind myself that it had been only a few hours since the surgery was finished, and I couldn't judge the end result by what I had seen in the mirror. There would be more operations to revise the graft, to remove the extra skin, which had been purposely placed there to allow space for all the swelling, and to allow the graft to be monitored.
The next few hours were crucial, and it was important that the graft keep its blood supply. Every hour a nurse walked in and touched me there to feel its warmth, then poked me to test capillary reaction. I saw the hand coming near my face, but I couldn't feel a thing. I wasn't the least bit concerned with whether the graft would survive; I assumed it would. Far more important to me was whether or not the operation had been a horrible mistake in the first place. I knew better than to expect perfection, yet I had not anticipated how foreign it would look. I shut down, tried not to think about it. When I did think about it, I projected my thinking forward to the next operation, the one that would fix this one.
I turned my attention to the process of healing. At first lying still had been no problem, but now I was getting cramps in my legs. To relieve the cramps I had to move my legs, and that sent shooting pains through the muscles in my torso. I felt as if I were in some kind of science fiction movie in which people are kept prisoner within bizarre, invisible force fields. At the same time, I didn't really mind the pain. Pain, if nothing else, was honest and open—you knew exactly what you were dealing with.
After the first few hours I was taken out of Intensive Care and sent to Special Care, which was one rung lower on the attention scale. There were three other beds. The one directly across from me was empty. In the one next to that, kitty-corner from my bed, was a girl who, I found out from eavesdropping, was dying from a brain tumor. Relatives came and gave her presents, which she opened with a blank, unknowing face. When she spoke, her words were unintelligible. She would grow frustrated when no one understood her and would throw a tantrum, sending objects flying across the room and toward the bed next to mine, where a teenage boy named Michael was recovering.
Michael's first comment to me was about my stuffed kangaroo, which my mother had bought for me and which all the nurses commented on. He said, dryly, that my kangaroo had usurped his monkey as the cutest toy on the ward. His monkey hung from a bar at arm's length above his bed. I didn't know what usurped meant, and when I asked him he laughed. He was only a year older than me, but he seemed to have lived a whole life already.
Michael would reach up to the bar hanging over his bed and use his arms to hoist himself up. He didn't wear a pajama top, so when his back was momentarily off the bed, I could see his muscles flex and the red lines indented into the pale skin of his back from lying on the sheets too long. He told me he'd dived off the top of a two-story building into a pool and had hurt his back.
"Why'd you do that?"
"I don't know," he answered, looking up at the ceiling. "It was a friend's pool," he said after a moment, as if that should somehow clarify the situation.
Whenever he spoke, he sounded slightly bored, slightly distant. But he talked with me quite a bit over the next couple of days, and I always felt privileged that he was speaking to me at all. If he were at school, would he be one of the boys who made fun of me? I stole sideways glances at him, his long wavy hair, the stubble on his chin and upper lip, and thought that, probably, yes, he would be. Yet here we were lying next to each other, both of us in a lot of pain, and I knew that here he would never dream of saying anything mean to me. I felt faintly triumphant. Someone from that "other world" had come over to mine.
One night Michael refused to take a particular pill, and the doctor came to argue with him about it. Michael fought with the doctors all the time, always questioning them and refusing to do things he didn't want to do; he was my complete opposite, for I still looked for praise as a "model patient." It was the middle of the night and the main overhead lights were off. His curtain was drawn, and I saw Michael's and the doctor's shadows thrown against the yellow curtain. The pill Michael was refusing to take was something he needed for his stomach. The doctor was explaining that when you spent so much time lying down, your digestive juices didn't work well, and this pill would counteract that. Michael kept refusing, his voice rising in protest, which I didn't understand at all. Why didn't he just take it? Then, inexplicably, he started crying and screamed at the doctor to leave. As the doctor left, I lay there looking at Michael's shadow, wondering if I should say something.
A few minutes later a nurse came to empty his mine catheter bag. I knew he had one—I had one too—but I'd never thought about how it might work with a man. The nurse didn't close the curtain properly, and when I looked over I saw for the first time an adult male's penis, this one being pushed up and held falsely erect by the tube inserted into it. It came as a shock because it was the first time I acknowledged that Michael, at the age of seventeen, was permanently paralyzed, all because of a stupid trick that took him ten seconds to perform.
I couldn't help but compare his situation to my own. My life was "different" from most people's, but it was essentially my own. I hated the face I remembered having a few days ago, and I knew nothing of the face I had now except that I feared it. But it existed, and I had only to look at it to know what it was. Michael had lost something he was never going to get back; my face had only changed into the next shape it was meant to have. I could not dare to think I might actually want or like that shape, but I had a sudden realization that to have it at all meant something.
Two days later I was transferred to a regular ward. As I was wheeled away I promised Michael I would come visit him, but I never did. As soon as I was back on the ward filled with nose jobs and jowl tucks, I grew fearful of my distorted face again and put Michael and his predicament out of my mind. I was walking to the bathroom by myself now, and each time I opened the door I saw my own face reflected back at me. Was that really me? I knew it had to be, but how could it
possibly relate to the person I thought I was, or wanted to be? I considered the whole operation a failure, and when the doctors came around and told me how well it was healing, how good it looked, my heart sank. We were speaking two different languages; if this looked good, then what I thought would look good must be an impossible dream. I felt stupid for having had any expectations or hopes at all.
When I got home, I thought of Michael again and again. Did he ever reimagine himself standing on that roof or try to remember what it was like to not know his fate for just one split second longer? If he didn't, I did it for him. I'd close my eyes to feel the height, see the bright blue of the pool winking below me, bend my legs, and feel the pull in my calves as I jumped up and then down, falling from one world of unknowing into the next one of perpetual regret.
TEN
The Habits of Self-Consciousness
IT WAS ONLY WHEN I GOT HOME FROM THE HOSPITAL that I permitted myself to look more closely at my new face. It was still extremely swollen (it would be months before it went down), and a long thin scar ran the length of it. In the middle of the scar was the island of pale skin from my hip. Placing my hand over the swollen and discolored parts, I tried to imagine how my face might look once it was "better." If I positioned the angle of my face, the angle of my hand, and the angle of the mirror all just right, it looked okay.
Actually, in my mind, my face looked even better than okay, it looked beautiful. But it was a beauty that existed in the future, a possible future. As it was, I hated my face. I turned my thoughts inward again, and this strange fantasy of beauty became something very private, a wish I would have been ashamed to let anyone in on. Primarily it was a fantasy of relief. When I tried to imagine being beautiful, I could only imagine living without the perpetual fear of being alone, without the great burden of isolation, which is what feeling ugly felt like.