by Lucy Grealy
One afternoon when Evan and I were playing an intricate game of jungle in his living room, his father passed through on his way to the kitchen. Pausing in the doorway for a moment, he turned and addressed me directly. I knew that his wife had died of cancer several years before, but I couldn't have imagined what went through his mind to now see a child with the same disease, the same prospects. He was the first person to mention chemotherapy, and he looked at me steadily and sadly for a minute before asking if I knew what it was. I'd been told I was going to have chemotherapy, but it had been described as simply another drug, another injection, maybe one that would make me a little flushed, no more. I'd had some unpleasant scans involving injected dyes, which had transformed the world into something woozy and hot, but nothing so bad that I felt unable to face it again.
My explanation wasn't what he was expecting, but, unable or unwilling to finish what he'd started, he mentioned something vague about chemical changes in my body, about how my hair might be affected. Having no idea what he was talking about and sensing something serious I'd rather not pursue, I made a joke to Evan about how my hair would turn green, my eyes purple. This was the second time an adult had tried to approach me directly and seriously about my situation, and it was the second time I had turned it around, refused to tackle it.
Death had become part of my vocabulary when I was six. The gerbil was the latest in a long line of family pets to die, and with my sister Susie, who was twelve at the time, I was disposing of the body behind the house. Our dog Cassie had died a year or so before, and though I missed her, at the time I had felt confused by Susie's irrational tears and bad tempers in the days afterward. Now the gerbil was also dead, and though I'd had no real attachment to him, I was sorry. He lay on top of a brown paper bag from the A&P, soon to be his final shroud. His fur parted and clumped together in a strange way, the deadest thing about him, and when I touched him I couldn't believe how hard, how cold, he was. Susie picked him up by his tail, and the sunlight suddenly illuminated the dullness of his still open eyes. A strange idea entered my head, an idea so preposterous it couldn't be true. How could it be? Surely Susie would laugh at me for even suggesting it, but I felt I had to make sure anyway, for my own peace of mind.
I paused for a moment, considering how best to phrase it. I went for the negative approach.
"People don't die, do they?"
She looked at me with the surprise I'd hoped for, the faintly amused look that told me my fear was unfounded, but her response became proof positive that one should never ask a twelve-year-old sister anything With glee in her voice she commenced to describe in great detail how you went into the cold dark ground, how the skin fell off your bones, how your eyes fell out. In a truly inspired touch, she began singing:
The worms crawl in, the worms crawl out,
in your stomach and out your mouth.
I don't blame her. I was an easy mark, and had I been in her position I'd have done the same thing. Part of the job of being human is to consistently underestimate our effect on other people, and for the specific job of being a twelve-year-old with a younger sister, cruelty is de rigueur.
As we stood there near the driveway, Susie had no idea what she had just implanted in the deepest part of me. No one had any idea, not my parents or teachers or friends, because there was no way I could discuss it. If the word death was even mentioned in my presence, I would collapse. At night I dreamed of being carted off and left alone in a dark, cold room filled with bones, bones that would wake up once I was in there and dance around me. There was a small, dark hole in the steps in front of our house that led nowhere in particular, but in my new dreams it became the gateway to a world that terrified me, a world where people had no heads or, if they did, they were filled with worms and beetles. This was what awaited me, there was no way I was going to escape death, and as the days passed I became more and more frantic. If I saw a movie or television show that involved someone's death, I'd hide under the covers. When a schoolmate I didn't even know died tragically in a fire, I was convinced that I was somehow responsible.
Why had we been born if this was the terrible end we had to look forward to? My six-year-old self was privately obsessed with my terrors and questions, when salvation appeared in the most surprising place—the television show Laugh-In. A repeating skit, mixed in with all the sexual and political innuendos that were over my head, was the scenario of a ragged, exhausted man climbing to the top of a large mountain. At the peak sat a man with a long gray beard. The climber would ask the guru, "Oh master, what is the meaning of life?" Of course the answer was always a silly one, usually resulting in the climber's falling off the mountain. I'd seen references to a similar mountain and guru in the cartoon "B.C." Then I saw a National Geographic program that located this mountain, with its guru, in an actual place called Tibet. Immediately I went to my father. He was sitting in the living room, reading on the red couch so accustomed to his body that it obligingly hollowed to hold him more comfortably. After his death I used to curl up into this space and lie there with the cats, the warmth of his physical dent as reassuring as some ghostly hand in my hair.
"Daddy, how much would a plane ticket to Tibet cost?" I asked, offering no explanation for my question.
His eyes went up into his head and he scrunched up his forehead to let me know he was thinking. Looking down at his palm, he pretended to do calculations, muttering to himself. After a minute of this he turned and looked at me as he would an adult. "One million dollars," he announced, as seriously as I had asked him. I thanked him and left. For a six-year-old, one million dollars was about as unintelligible as one hundred, but I decided to start saving. I understood it might take some time, possibly years.
Gradually my obsession with death was replaced with other obsessions, with new, daily discoveries about what it meant to be alive. But for a long time I put myself to sleep at night by imagining the mountain, the long, arduous climb. I counted off each step the way other people counted sheep, and each night that I made it to the top I'd ask my question, yearning to hear every minute answering vibration of sound, believing that perfecting my ability to listen was all I needed to know the answer. Truth was something that existed; it's just that it lived far away.
I had long forgotten the trauma of the gerbil when I became ill, and the idea that death had anything to do with me directly didn't even enter my mind. It wasn't so much avoidance but the simple belief that nothing bad would ever, couldever, happen to me. Sometimes I wonder if it wasn't this disbelief that kept me alive. Even later, when I could not avoid realizing that I was very ill, I didn't understand that what was happening to me was important, dangerous. Despite my knowing that people died, it never occurred to me that I might personally be implicated.
Later, as a teenager, I worked in a library, and one day as I was reshelving books I found myself in the medical section, where a book on pediatric oncology caught my eye. Pulling the heavy thing out, I laid it on the table, opened to the index, and looked up my cancer, Ewing's sarcoma. I turned to the given page and read a brief description of the various manifestations of it, followed by a table of mortality rates. A reasonable chance of survival was given at five percent.
The paper of the book was heavy and almost cream-colored, and I ran my finger along the letters, which were so black I half expected to feel them raised up on the page. I looked up. The room was empty and buzzing with both bad light and the numerous stacks of books I still had to shelve. Five percent. I felt obliged to say something, but no one was there, and I didn't know what I was supposed to say anyway. Placing my hand on my neck, feeling the pulse there, I stood for some minutes on the verge of moving or speaking or sitting or something. Then the impulse passed, and I was on the other side of it, feeling as if I'd forgotten something, some name or object or emotion I'd meant to take note of but had carelessly allowed to slip by. Finally someone walked into the room, breaking the silence with the squeak of winter boots, and I turned, reaching for another book to
shelve.
FOUR
Fear Itself
THE STREETS IN NEW YORK CITY ARE THEIR OWN country. A knowledge of them gives one a sense of power. It makes no difference that for the most part New York is a giant grid, supremely traversable compared with such labyrinths as Paris or London. Its power heaves up from the pavement right in front of your eyes, steam escapes in fits and starts as if the whole place were going to blow any minute, people who have already blown apart lie crumpled in its crevasses, and all the while there is a thin promise, a slight wheedling tone, that something important, something drastic, is about to break.
I drove with my mother into the city five days a week, every week, for two years for radiation and chemotherapy treatments, and then once a week for another half year to finish out the chemotherapy, which was administered most Fridays, with periodic "vacations." My mother worked mornings in a local nursing home and would come to pick me up at our house at midday. We got into the car in our suburb, drove for just under an hour through the relative countryside of the Palisades Parkway, propelled ourselves across the Hudson via the George Washington Bridge, and found ourselves deposited smack in the middle of another world. Billboards advertised the good life in Spanish, ancient cobblestones emerged in patches from the tar, which shivered and smelled in summer and shone black and cruel in the winter. Grotesque figures loomed everywhere, but they didn't frighten me, nor did the filthy and the slobbering insane, the homeless and the drunk. I felt keenly the great expanses, the chasmal spaces between all of us, which one seemed prepared to reach across. Even as I was spooked, I was impressed by and admiring of the constant chord of toughness and strength, which acted to harmonize all the many and varied notes in the city, the thousand and one vignettes of overheard conversations, glimpsed lives.
My mother and I usually drove the miles to the city engulfed by out own private, inner travels, the radio's sound filling the front seat like an anesthetic. Once we got to the city and went through the customary parking ordeal, we walked the few blocks to the hospital in silence. This was the routine we fell into, and it seemed natural to both of us.
The Radiotherapy Department existed deep in the guts of the hospital in a specially built section with cement walls many feet thick. Chris, my "radiotherapist," explained that careful regulations made the walls so thick. She placed her hand on the otherwise innocuous, pale yellow plaster and told me in reverent tones about the care one had to take around radiation. She herself wore a thick green smock made of lead. She let me hold it once, and it seemed to weigh as much as I did.
On my first visit I could tell Chris was keen for me to see her "as a friend." Her hair was streaked blond and her arms were strong and athletic. Her uniform was an unbecoming yellow that clashed with the yellow walls. The entire department had a different feel from the rest of the hospital, set off by a cocoon quality and by genuine attempts to make something human of this lead and cement hole in the ground. The employees hung up family photos on the reception area walls, and if they didn't have kids of their own, they put up overly cute pictures of cats and dogs. Posters of orangutans proclaiming Every time I figure out the rules, they change them and of puppies thanking God it was Friday adorned the ceilings of the treatment rooms, demanding attention as I lay on my back.
Radiation treatment itself was a breeze, about as complicated as an x-ray. I'd get up on the table, and Chris would don her lead smock and turn out the lights. Bulbs inside the clunky machine hanging from tracks on the ceiling would shine down on my face, waiting to be aligned with the Magic Marker x's drawn on my neck and face. "Hold your breath!" the command would come from somewhere in the corner, and I'd inhale as deeply as I could, almost always thinking about a movie I'd seen, a maritime disaster in which the hero had to swim a long distance underwater in order to save everyone else. I'd held my breath along with him, wondering if I too had it in me to save the others. Believing that one should be prepared for any emergency, I went about trying to improve my breath-holding capacity, and lying there on the gurney in Radiotherapy seemed as good a place as any to practice for a disaster at sea. As the machines over my head clicked and whirred softly, my body swelled with air, trembling almost imperceptibly with the desire to let it all fall away from me, deflate back out to the place it had come from. Just when I was about to abandon all hope and let the salty water fill my lungs, Chris's voice would sound from the dark corner.
"Breathe!" The overhead lights came on, Chris appeared without her lead burden and helped me off the table, and it was all over until the next day.
If it was Monday, Tuesday, Wednesday, or Thursday, that was the whole procedure. I'd find my mother in the waiting room, and we'd take the long elevator ride back up to street level, get back in the car, and head home, hoping to avoid rush-hour traffic. Friday was different. Every Friday, usually around three o'clock, was my appointment with Dr. Woolf at the chemotherapy clinic.
I was already two weeks into the radiation treatment before I had my first appointment with Dr. Woolf, and despite Evan's father's early warning attempts, I went into it completely unprepared. Radiation at that point seemed like a good deal—all that time off from school, no pain, or at least not yet, the meditative drives into the city with my mother. The only thing that really worried me about chemo was the prospect of weekly injections, because that's all I thought it would be, an injection. If I had been blind to what the original operation would be like, and blind to warnings about chemo, once I entered the clinic I got my first intimations of what was about to happen.
In sharp contrast to the new Radiotherapy Department, the chemotherapy clinic was old-looking, drab. The main waiting area was on one side of a much-used hall, a main thoroughfare for the hospital. It was completely open, like a lounge, and on the walls hung dark oil portraits of men whose names I never bothered to learn. The couches and chairs were covered in dark green vinyl, the floor was black tile with white traces almost worn out of existence. My mother wasn't allowed to smoke, which drove her insane, especially since week after week for two and a half years we had to wait at least two hours past the scheduled time before my name was called.
The other people in the waiting room fascinated me. We all looked exhausted, though relative health seemed to vary widely. Over the years I became expert at diagnosing the drugs each child was receiving from his or her appearance. Some looked bloated and sluggish, others were thin as rakes, and almost everyone was in some stage of losing or growing in their hair. Hats, scarves, and wigs covered the naked scalps. On that first visit I felt apart from the rest of them, felt a million miles away.
When we were finally in Dr. Woolf's office, my mother ready to scream from the long wait, we encountered his telephone, apparently a permanent appendage. He could carry on a conversation with my mother, me, his nurse, his secretary down the hall, and someone on the phone simultaneously; he had it down to an art. My mother thought him incredibly rude, and she was right. Dr. Woolf's manner was gruff and unempathetic. The first time he examined me I could only flinch at his roughness as his large fingers pressed hard into my abdomen, pried open my still stiff mouth. His appearance didn't help. Tall, large-featured, and balding, he had a peculiar large white spot on his forehead, which caught the light in an unflattering, sinister way. His nose was tremendous, his lips invisible. He scared me.
His office was as drab as the waiting room but was saved by a large, multipaned window that looked out onto a well-tended courtyard with banks of blue flowers and ivy-clenched trees. I spent a lot of time looking out that window. I spent a lot of time forcing myself to look out that window, because even on that first visit I knew that this room was no place for me. The only thing I wanted to know about this particular interior was its implicit exterior, an existence that had nothing to do with me, Dr. Woolf, my mother, the treatment table, which was too tall for me to get onto by myself, or the two 60-cc syringes waiting patiently in their sterile packets.
This first examination was more thorough than the ones
I would later receive. I was asked to strip down to my underwear, which I did, feeling humiliated and exposed. While the doctor talked to the nurse, my mother, and the person on the phone tucked beneath his chin, he prodded me with his hands, hit me just slightly too hard with his reflex hammer, and spoke far too loudly. When he touched me I could feel the vibrations of his voice in my own chest, feel them lapsing through my body's cavity the same way you feel a car passing too closely. He got out a tourniquet and wound it tightly around my arm, pinching the skin just like a kid on the playground giving an Indian burn, and despite every ounce of strength I could muster, I began to cry. Not loudly, not even particularly heartily, just a few simple teats, which were as accurate and prophetic as any I'd ever shed.
The butterfly needle, named for the winglike holds that fanned out from its short, delicate, bodylike cylinder, slipped into my arm, a slender pinch I barely felt. Because it was inserted into the crook of my arm, I had to sit with my arm rigidly straight, held up awkwardly and overly self-consciously. I began to grow warm, a caustic ache began settling into my elbow. For a split second, a split of a split second, the sensation was almost pleasurable, a glowing, fleshy sense of my body recognizing itself as a body, a thing in the world. But immediately it was too much: I felt the lining of my stomach arc out and pull spastically back into itself like some colorful disturbed sea anemone.
It was an anatomy lesson. I had never known it was possible to feel your organs, feel them the way you feel your tongue in your mouth, or your teeth. My stomach outlined itself for me; my intestines, my liver, parts of me I didn't know the names of began heating up, trembling with their own warmth, creating friction and space by rubbing against the viscera, the muscles of my stomach, my back, my lungs. I wanted to collapse, to fall back onto the table or, better yet, go head first down onto the cold floor, but I couldn't. The injection had only begun; this syringe was still half full and there was a second one to go. My head began to hurt. Not sure if my brain was shrinking or swelling, I squinted around the office, not in the least bit surprised to see a yellow-green aura surrounding everyone, everything, like some macabre religious painting.
