by Lucy Grealy
Life became more complicated at home when my father lost his job in the news department at ABC. The loss of his job meant the loss of his medical coverage. Luckily my mothers job was able to take up part of my coverage, but we were still in a bind. Family life became more tense. Days were filled with phone calls and letters and endless forms. Nights were filled with even more arguments about money. Under my father's plan, the hospital pharmacy had sent the drugs used in my treatment up to the clinic. Now we had to pick up and pay for the drugs ourselves. To my extreme horror, this meant we had to store them in the refrigerator at home. Every time I opened its door, there they were, a row of short glass vials lined up in the butter rack. The cold light glinting off them made my stomach lurch.
For some inexplicable reason, the new coverage, so inadequate in so many ways, paid for an ambulance to transport me to the hospital each day. The notion thrilled me. But the day the ambulance actually pulled up in front of our house I felt self-conscious and awkward as I walked down the lawn. A group of neighbors had come out to see what was happening and stood there in a circle, watching. "I'm not really that sick," I wanted to tell them. "This is just a big joke, get it?" Though I knew I'd lost weight and was a bit pale, I never considered myself all that sick. I thought of myself as separate from them because of what I'd gone through, but it didn't occur to me until then that people might actually pity me. The idea appalled me.
Horrified as I was that people might feel sorry for me, I also knew that I possessed a certain power. After all, people noticed me. Wherever I went, even just to the store with my mother, I was never overlooked. I could count on some sort of attention, and I discovered that people were embarrassed when I caught them looking at me. I stared right back at these strangers with my big blue eyes, which appeared even bigger now that I'd lost weight and now that, without bone to shape it, the right side of my face was starting to sink in. They always looked away quickly, trying to pretend they hadn't been staring.
If this type of attention wasn't always comfortable for me, it nonetheless further defined me. Most people struggle all their lives to avoid fading unnoticed into the crowd, but this was never my concern. I was special. Being different was my cross to bear, but being aware of it was my compensation. When I was younger, before I'd gotten sick, I'd wanted to be special, to be different. Did this then make me the creator of my own situation?
The ambulance rides continued for only a few weeks. Then my father got a new job at CBS and I was again covered by his medical insurance, meaning no ambulance and no more storing the drugs in the refrigerator. I was relieved on both counts. My mother and I once more took up our daily drives to the hospital. The whole way there I stared out the window and as before imagined myself on a horse, galloping along the strip of grass beside the road, jumping the irrigation ditches and road signs.
SIX
Door Number Two
EARLY ON IN THE TREATMENT MY HAIR BEGAN TO fall out. Although I had been warned, I was taken by surprise the first day I reached up to sweep my hair back and found a handful of long blond hair in my hand. I guess I'd never believed this really would happen. I was sitting in the car with my mother when I first noticed it, and I started to cry. At a loss to say anything that would truly comfort me or stop my hair from falling out, my mother reminded me that I had known this would happen, that I shouldn't get so upset—as if foreknowledge of an event could somehow buffer you from its reverberations. Feeling, again, that I had failed simply by being upset made me cry harder.
I'd never thought much about my hair. I had been complimented on it, but such remarks had never particularly interested me. More often than not, my hair seemed like a bother to me, something that got in the way when I wrestled or climbed trees. But now? When I undressed at night, I heard the static of my sweater as I pulled it over my head, then saw the long strands on the collar waving in the breeze of its electricity. I'd sit up in bed in the morning and look down at the tangles of hair on my pillow. As water tan out of the bath, I had to sit on the edge of the tub and reach over several times to free up the drain. Once an aggressive, careless brusher, I now patted at my head with a comb very carefully and very gently.
Involved as I was with the physical process of losing my hair, I somehow ignored the change in my appearance. I knew I was going bald, I knew I was pale and painfully thin, I knew I had a big scar of my face. In short, I was different-looking, and I knew my face had an effect on other people that I could sometimes use to my advantage. But I was still keeping myself ignorant of the details of my appearance, of the specific logic of it. My intuition must have known it was better this way.
In the same way that I understood the extent of my illness while not actually admitting I was ill, I spent a very long time not acknowledging that I was going bald, even as I swept my own hair off the dog's black coat after a particularly vigorous hug. I was too young, only ten, almost eleven, to be any Samson. Sex appeal belonged to toothpaste commercials, while sex itself was still a mysterious thing, clues to which could be found in the pages of my brother's magazines. Though the pictures were mysteriously compelling, I mostly found them slightly repulsive, and I regarded sex, whatever it was, as something I'd surely never take part in. I looked at myself in the mirror with a preoccupied preadolescent view, which is to say that I looked at myself but didn't judge myself. When the first taunts and teases were thrown at me, usually by some strange kids in the supermarket parking lot, more often than not I was able to come back with an insult far more sarcastic and biting than their own rather unimaginative Baldy or Dog Girl. I understood that their comments were meant to impress each other more than harm me. I possessed a strong sense of myself—and I lived vividly in my world of hospitals and animals and fantasy. I had no sense of myself in relation to the "normal" people I walked by every day. I was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority to them, for the moment, anyway.
Sometimes when I was in the hospital, days or even a week would pass before I was well enough to get up and wash my hair. I hated the way it got oily and lanky and bunched up in tangles behind my head from lying on it so long. That first morning when I could get up and wash it was always a great relief. But finally one morning, when I asked my mother to help me wash it, she looked at me sorrowfully and suggested, in a kind voice, "Maybe it's time to cut it." And that's what we did. She borrowed a pair of scissors from the nurse's desk, and while I sat in a chair she snipped off what remained of my hair, my white, white scalp shining through. We discovered for the first time that I had a large birthmark above my left ear.
The next morning my mother came in with a hat, a small white sailors hat, which I put on and almost never took off for the next two and a half years, even during the periods when my hair was growing back in. Sometimes it grew several inches and was perfectly presentable as hair, but I knew it was only going to fall out again, and I refused to be seen in public without my hat. My hat. It became part of me, an inseparable element of who I thought I was.
My hat was my barrier between me, and what I was vaguely becoming aware of as ugly about me, and the world. It hid me, hid my secret, though badly, and when people made fun of me or stared at me I assumed it was only because they could guess what was beneath my hat. It didn't occur to me that the whole picture, even with the hat, was ugly; as long as I had it on, I felt safe. Once, on television, I saw someone lose his hat in the wind and I immediately panicked for him, for his sudden exposure. It was a visceral reaction.
As the teasing continued, both from strangers and from the very boys whom I'd once regarded as friends, I began to suspect that something was wrong. I identified the problem as my baldness, as this thing that wasn't really me but some digression from me, some outside force beyond my control. I assumed that once the problem was solved, once my hair grew back in, I would be complete again, whole, and all of this would be over, like a bad dream. I still saw everything as fixable.
During this time my mo
ther was working in the Occupational Therapy Department of a Hasidic nursing home, and most of my mother's coworkers were Hasidim. Hasidic custom dictates that once a woman is married she must cover her hair. This used to be done with kerchiefs, but now most of the women wore wigs. I imagine they grew tired of their wigs the same way other women grow tired of their clothes, because there seemed to be a surplus of discarded wigs in the community. As my mother's friends became aware of my predicament, they generously began to donate these hand-me-down hairpieces. My mother didn't know how to refuse them, and the first time she came home with a wig we all had a good time in the kitchen playing with it, trying it on ourselves first and then on the cats. When I put it on, I looked as ridiculous as my brothers and sisters, not to mention the cats, so it was all a big safe joke.
But more wigs kept coming home with my mother. Sometimes it seemed she had a new one every day, and the house began to fill up with them. Each emerged as more atrocious than the last; it was impossible to take any of them seriously. When her friends at the nursing home asked how the wigs had worked out, my mother politely but truthfully told them that none of them fit me properly. One of my mother's closest coworkers offered the services of her wig maker, who would measure my head and make one "just the way I wanted it, just like my real hair." Not wanting to appear ungrateful, I, coached by my mother, thanked this woman and agreed to go for a fitting, with the unspoken understanding between my mother and me that I did not really want a wig.
We drove to New City, a nearby town with a large Jewish population, and found the store in a small cluster of shops. I'd never been to a "parlor" before, and somehow I'd envisioned a fancy salon filled with glamorous women. But the room was harshly lit, with long overhead fluorescent bulbs, and instead of Warren Beatty, whom I'd seen in Shampoo, we were greeted by a small, old man who was bald himself. He affectionately beckoned me to sit in a chair facing a mirror framed with roughly carved pink and gold flowers. A large, dusty rubber plant with leaves as big as my head filled one corner of the room.
"So, the little girl wants a wig, eh?"
He smiled at me in the mirror. I shriveled inside, mortified beyond any realm I'd previously thought possible. He turned to my mother, and they began speaking, his hand resting on my bird-thin shoulder. I kept watching him in the mirror, not because I was fascinated by him, but because I didn't want to look at myself. I knew the moment was coming when he'd ask me to take off my hat. I knew there was nothing I could do about it except pretend I didn't care, and when he turned back to me and the moment finally came, I took off the hat as nonchalantly as possible and placed it in my lap. I kept my gaze directed at him in the mirror while he took out a measuring tape and ran lines over the various angles of my head. I liked this part. My hair was growing in at that point—it was about half an inch long—and his dry hand stroked the babylike fineness of it with a tenderness that made the back of my neck go all goose flesh.
After the measuring, he went to the back room to get different samples. Knowing I'd had long blond halt, he brought back wigs of varying lengths and shades of blond, ranging from bright yellow to almost brown. He placed each one in turn on my head and discussed with my mother which types were closest to my "natural" state. He explained that all of the wigs were made of human hair, which made me envision a bizarre blend of the Christmas story "The Gift of the Magi," in which a woman sells her hair for the sake of love, and the Holocaust, where I knew they'd shaved the heads and kept the hair of people about to die horrible deaths.
Now it was unavoidable; I had to look at myself in the mirror. As each wig was put on and adjusted, both the man and my mother would ask me what I thought, but all I could manage was a sullen nod or shake of the head. Looking at myself in these wigs, with their dull, however human, hair, horrified me, and each time the man commented on "how natural" it looked I could only see him, and eventually myself, as that much more alien.
How long was this going to go on? How many wigs were there in the world, anyway? Though inside I was growing more and more petulant, I made halfhearted efforts to look happy, and when the last wig was finally tried on, I actually smiled when the old man asked how I liked it. I hated it. At last the issue of cost came up, which in my mind signaled the end of this charade. I knew my mother would never want to pay for something as ludicrous as a wig, and besides, hadn't we more or less agreed we weren't really going to get one? The man quoted an astounding sum, far higher than we could have even joked about. I sat in the chair, my feet swinging, ready to leave, and watched the reflections of my mother and this man talking in the mirror. To my great amazement, I saw a look on my mother's face that seemed to say she was actually considering ordering one of these overpriced, custom-made patches of hair. Could she be serious? I looked on in amazement, and when we finally left the store it was with a promise that she would think it over and call him tomorrow.
Once we were in the car, I thought she would look at me and we'd both laugh, share our private joke, but instead she turned and addressed me seriously. "Well, do you want one? It's a lot of money, but if you want one, I'll buy it for you."
What had happened? I thought we'd only gone to be polite to her friend. Wasn't it obvious how hideous those wigs were, how alarming? I didn't know how to reply. Back at home she called up her friend to tell her what had happened, and I heard her say, "It was the first time in a long time I've seen her smile. She hasn't smiled in so long."
So that was it. Normally I was intuitive and could guess what was going on behind people's words and actions, but if my own mother could be so wrong about me, how could I know I wasn't mistaken in my own interpretations?
To keep the situation from getting too far out of hand, I went to my mother and told her outright that I didn't want a wig, that I thought they were ugly. She looked relieved because of the expense, but as she looked at me and smiled I thought again of what she'd said on the phone. I smiled at her, sick in my heart at this newly discovered chasm opening up between me and the rest of the world, as if there weren't enough chasms already. But out of my compulsion to continually seek the truth I questioned her about her conversation with her friend, which I saw as a betrayal of me. I insisted I was okay, happy even, that the wig was a big joke. She smiled back at me even more broadly, relieved to see my old self, and for that moment I was happy, content that I could at least give her that.
I kept on wearing my hat. But I couldn't shake the image of my face staring back at me with that ludicrous, grotesque halo of a wig. Did they actually mean it when they said, "Now doesn't that look nice?" I felt quite certain that I looked awful in those wigs, yet why did my belief not seem to match up with everyone else's? Were they lying to me? Perhaps they didn't want to hurt my feelings. It was dawning on me that I might look much worse than I had supposed.
One morning I went into the bathroom and shut the door, though I was alone in the house. I turned on the lights and very carefully, very seriously, assessed my face in the mirror. I was bald, but I knew that already. I also knew I had buck teeth, something I was vaguely ashamed of but hadn't given too much thought to until this moment. My teeth were ugly. And, I noticed, they were made worse by the fact that my chin seemed so small. How had it gotten that way? I didn't remember it being so small before. I rooted around in the cabinets and came up with a hand mirror and, with a bit of angling, looked for the first time at my right profile. I knew to expect a scat, but how had my face sunk in like that? I didn't understand. Was it possible I'd looked this way for a while and was only just noticing it, or was this change very recent? More than the ugliness I felt, I was suddenly appalled at the notion that I'd been walking around unaware of something that was apparent to everyone else. A profound sense of shame consumed me.
I put the mirror away, shut off the lights, went back into the living room, and lay in the sunlight with the cats. They didn't care how I looked. I made a silent vow to love them valiantly, truly, with an intensity that would prove I was capable, worthy of ... I wasn't sure
what, but something wonderful, something noble, something spectacular. I repeated the same vow to the dogs.
My father worked odd hours, leaving late in the morning and not arriving home until long after dark. He'd cook his own dinner and eat it standing up near the sink while staring contemplatively out of the viewless and dark kitchen window. Some nights I'd get out of bed and go visit him there. He'd hear me pad into the room and stare at me, his face surprised for only a moment before it transformed into genuine pleasure at seeing me. "Lucinda Mag," he'd announce, as if he were only just then naming me, and I'd sit down on a chair, pulling my nightgown over my knees, stretching the material tight. He'd sit down at the table with me and eat in silence while I watched, both of us perfectly content.
One night when I walked in he was wearing one of the wigs. They littered the house by then, and we'd grown careless with them. The cats slept on them, the dogs played tug of war, and they were still good for a few laughs when visitors put them on.
My father was standing over the stove, stirring a panful of something sizzling. "Lucinda Mag," he announced, grinning, inviting me to tell him how silly he looked. I didn't. I simply sat down as always and watched him finish cooking and eating his solitary meal until finally I couldn't stand it anymore.
"Daddy, take it off."
"Take what off?"
"The wig."
"What wig? I'm not wearing a wig."
"Daddy."
"I have no idea what you're talking about."
It went on like this. I knew he was joking, and I knew he had no idea how much I really wanted him to take the wig off. I gave up. Freeing my knees from my nightgown, I walked over to him, pushed the long hair aside, and kissed him good night.
