Fluorescent light sharp in my eyes, a dull sheen of bed rails, petals the color of blood, everything too bright. A pain in my bladder where the tube was stuck. My grandmother’s veiny hand. Someone moaning, bovine, not me. Curtains being drawn around my bed, cloistering me.
It hurt to pee, it hurt to breathe. My urine came in crystals, and the catheter would not be removed until I could “make a stream.” There was the problem of my lungs. They needed air. A tube was inserted down my throat; the other end attached to a machine that forced cool steam into my lungs. In Out In Out—Good! The nurse kept chanting. Each breath a slicing of my lungs. I tried to move my arms, I tried to pull out the tube. Gently, the nurse took hold of my right hand. My left hand, the one I wrote with, was taped to an IV. The machine pumped its steam, forcing my lungs to work. I took tiny breaths. My mother smoothed my hair and murmured words of soothing.
Between shots of morphine I slept, waking to ask what day it was when mere hours had elapsed. Gradually I became more aware of my pain, more aware of how little I could move, not even my arms, though I had been told I was not paralyzed. My body was in shock and needed to recover. Soon enough I would be able to raise my voice, and I did—for blankets, for socks, for morphine—mostly for morphine. After an injection I would drift as though wrapped in some warm fleecy cloud, floating above where I lay motionless. I had no body then. Slowly the heaviness would return, the pain. By the final hour I was dry-mouthed, fixated on my shot. I watched the clock. The hands would not budge. Five minutes then five minutes more—this stretched out for years. A buzzer looped around the bed rail, just within reach, but it was pointless to ring it before the appointed time. I rang anyway. I sweated, groaned, tore at my cuticles, drawing blood. I rang and rang. I felt every inch of my ravaged spine. Often by the time the nurse arrived I was in tears. The injection swept that away. Its effect was an immediate sweet languor.
My veins began to collapse. Bruises formed on both my arms. One morning a technician came to change my IV. He had trouble raising a vein. The rubber tourniquet pinched my arm as he tapped here and there, searching for a spot. They’re so small. He complained, angry at the difficulty I was causing him. By now I could move my arms and I folded them against my chest. He pried them apart. There! Got one! He jabbed me, the needle jiggling in my vein, sending fire up my arm. I let out a cry. He tugged at the needle. Already a lump was swelling where he had missed, a tiny loaf rising in my forearm. Other arm. Again he missed, the needle dangling. I felt as though my veins were being scraped clean. Too small, I can’t get a good one. We’ll try the feet.
I was terrified of what this needle man might do next. I begged him to go away. He untucked the covers, exposing my feet. He told me to stop being a baby. Hysterical, I began to cry. The needle man readied his needle. I screamed—NO—and my mother came running into the room. She’d just arrived, still wrapped against the cold.
Don’t let him touch my feet! I wailed. He’s hurting me!
She pushed the technician away from my bed. I could not stop crying. My mother stood between my bed and the technician. She ordered him from the room, then found the head nurse who found someone from pediatrics, adept at locating a baby’s sliver of vein. From then on a pediatric technician administered all my injections, and the bruising subsided.
The nurses were harried; they did their best. Each day they washed me, brushed my teeth and hair, gave me liquids, then Jell-O, then solid food. This meant I needed a bedpan, a new humiliation, and the nurses did not always arrive on time. I drenched my sheets more than once, developed rashes. For over an hour I was left on a fetid pan until my mother showed up. Told how long I’d been waiting, she threw a fit, the only time I heard her raise her voice at anyone involved in my care. Her frustration, like mine, encompassed so much more than this single act of neglect. It was boundless and had nowhere to go.
Postoperatively, the patient did well. Her wounds healed primarily. On the second postoperative day, the Hemovacs which were inserted at the time of surgery were removed and the patient transfused appropriately for her postoperative blood loss. By the tenth postoperative day, the patient’s wounds had healed sufficiently that it was possible to remove the sutures and place her in a localizer cast with the right leg included.
—Dr. Wayne Southwick, Chief Orthopedic Surgeon
Yale New Haven Hospital
My painkillers were switched from morphine to codeine, from injections to pills. I no longer needed an IV drip. I ate hospital food: fruit cocktail, pudding, runny meatloaf, limp vegetables. Dr. Southwick judged it time to set me into the cast.
Ten days after my surgery, a gurney was wheeled into my room and raised to the level of my bed. Only a nurse and an intern were available to move me and because I was still in a temporary plaster “shell,” my spine fragile, it was important that I not be jostled. The nurse asked my mother to help lift me from the bed to the gurney. Worried that she might drop me, my mother refused. Get another nurse, she insisted, get someone else to help. The ward nurse dismissed our fear: We don’t need to get someone else; it’s all right. But it wasn’t all right and my mother wouldn’t let them move me until another trained person had been found to help.
I was taken to a large, well lit room where Dr. Southwick waited along with several others: nurses, interns, technicians. My memory of the event is hazy. I was given a sedative and laid face up on a high table. First the plaster shell was severed along the sides and the top half pulled from my body. I was rolled over, face down, and the other half of the shell was removed, leaving me exposed. The gauze I’d been wrapped in was snipped away. I could feel scissors, cold on my skin. Dr. Southwick examined the scar that ran, I knew, from the middle of my back to my tailbone. The others crowded in to compliment his work, remarking on how fine the incision was, how pencil thin, a masterwork.
I may have been x-rayed, I don’t recall. My impression is that Dr. Southwick oversaw the procedure, but did not actually do the work himself. From chin to hip I was wrapped in gauzy cloth like a kind of body stocking. A nurse held my head. Someone asked which leg. Being left-handed, and stronger on that side, I chose my right leg, which was then wrapped to the knee. Plaster soaked bandages were laid on my back and sides while I lay face down on the table. At first the wet plaster felt cool, almost refreshing, but gradually it heated up. Layer after layer was smoothed onto my back, neck, and thigh. I could not see anything, but could hear the slap of bandages, feel them hardening to a crust. When the last layer dried I was rolled onto my back and the procedure was repeated. Leg, hips, stomach, chin, bit by bit I was entombed. The bright lights the technicians needed to work by made me sweat inside the plaster. Another nurse wiped my forehead. Just a little longer, that’s it, good girl, we’re almost done. This went on for hours. When they finally finished, I was too heavy to be lifted but was rolled, with great effort, back onto the gurney and into my bed where I immediately fell asleep.
It wasn’t until the next day that I realized how small my new world had become. I could bend one leg and move my arms. My neck was cemented in place. I could see nothing but the ceiling. In order to read I had to hold a book above my head, which made my arms tire. I could not see the person standing by my bed unless I rolled onto my side, but the cast was too heavy for that. My skin was sticky and hot. For the next three months this chrysalis was to be my home and I the pale naked larvae waiting inside.
I recalled the story of Giles Corey, whom we’d learned of in eighth grade English while studying the Salem witch trials. Accused of being a warlock, he’d been crushed with stones at the age of eighty-three. More weight, he’d cried when pressed to repent. More weight. I thought about his lungs, organs and heart yielding. I wanted morphine. Instead I took the codeine I was offered, thinking that if I stayed drugged enough, I could maybe sleep my way through the next three months.
Without the ability to turn over, I could not feed myself. The shell had left both my legs free, but now my range of motion was impossibly small. Each d
ay a physical therapist worked with me on “mobility.” I gripped the bed’s metal guardrail and practiced heaving myself onto my left side, easier than my right, where the leg cast made turning difficult. Nurses slipped pillows under my head to elevate it slightly, and in this manner, lying on my left side, I practiced using a fork with my right hand. I hadn’t anticipated this, the awkwardness of eating right-handed when I was a lefty, the way the leg cast would prevent me from lying on my right side. At first food went everywhere. Discouraged, I stuck to liquids taken through a bendable straw. To entice me into eating, my mother brought me pizzas, deli sandwiches, chocolate cake. The nurses, deflecting my frustration, joked about how much better my food was than hospital food. Patti, one nurse cracked after I’d spilled another plateful of food into my bed, I swear your middle name is make-a-mess!
The therapist showed my mother how to move me so that I would not get bedsores, how to slide a bedpan in and out, how to wrap plastic around the cast when giving me a sponge bath, how to wash my hair with a bucket and shampoo board. Lift her head like this. Roll her this way . . . I was constantly being pushed, tugged, rolled this way and that, the body in the bed, useless and inert. During that first week in the hospital, my mother was a near constant presence on the adolescent ward. She knew the nurses by name, when their shifts changed, who was quick with a bedpan or shot, who needed prompting. She brought them candy; they let her stay past visiting hours. Because her visits were long (and because he was thirteen and hyperactive and, I found out much later, afraid) she did not bring Chipper. My mother and grandmother were my daily companions, but I had other visitors as well.
My aunt came with chocolates and cards my young cousins had crayoned. Carol and Janine came for a visit during which Janine nearly fainted. A nurse had come to tend the other girl in the room, the “bad case,” and had left the bed curtains open. The girl was groaning. Janine glanced over. I could not turn my head to see, I don’t know what she saw. Suddenly she blanched and grabbed the bed rail. She sat down, head between her knees. The nurse asked if she should bring a wheelchair but Janine refused, frightened I think of being mistaken for a patient. It was easy to be frightened when one never knew precisely what to expect.
For patients, there was the uncertainty that accompanied our surrender to care. Visitors experienced the anxiety and helplessness of seeing a loved one suffer—seeing, by extension, themselves. Perhaps it wasn’t the other girl who made Janine react after all. Perhaps it was me. The patient is a powerful mirror. There’s nothing like a hospital to make someone, even a teenager, aware of mortality. The visitor thinks, There but for the grace of God, yet knows that this is false. There but for the time being. The relief of walking away, through the revolving doors and into the cold night air, comes as a shock. Years later, visiting a friend with AIDS, I would go straight from hospital to restaurant, to binge on sushi and martinis.
The Conversation Issue arose. How to talk to someone laid up in bed for months? What to say? Not even that old standby the weather was any help. One afternoon my father arrived with a pastrami sandwich he’d bought for me in New York. I suspect my grandmother had badgered him; nothing but her words could convince my father to set foot in a hospital. He was a man who took his temperature incessantly whenever he caught cold. A man who called cancer “the Big C” and menstruation “that female thing.” Someone who had waited in the car whenever my mother needed to buy Kotex. Probably he’d been hoping to find other visitors in my room, but on this afternoon I was alone. My father’s discomfort was palpable. He did not know where to look. He waved the sandwich, a trophy, and asked to sign my cast. “To a great kid!” he wrote on my torso, adding the word DAD in giant block letters. I think that’s when he noticed the second gold stud in my left ear, a fifteenth birthday present from my mother. Piercing, he decreed, was barbaric. I reminded him that he liked boxing. That was different, that was sport. I did not know what to say about sport. Two healthy men pummeling each other’s bodies. The visit was brief and my father did not return.
My cast took up some of the conversational slack, becoming a slate on which visitors could convert their unease into pithy slogans: “Hang in there!” and “To a great kid!” People drew flowers, cats, butterflies, geometric designs with bright Flair pens. Will you keep the cast when it comes off? I was asked more than once. The idea horrified me.
Cards, flowers, gifts piled up on my bedside table and windowsill. My mother’s friends sent necklaces and earrings I could not wear. Their cards said I was “brave,” a word I rejected as false. I felt helpless, far from brave. I no longer did things, but things were done to and for me. That word, “brave,” mocked my enforced passivity.
Of course what could people say? Our language for illness and disability is so paltry, we often conflate them. “How long will you be sick?” I was asked. “I’m not sick,” I’d answer testily. “I’m in a cast.” Sickness was unpredictable, dangerous. In the hospital, the distinction was especially important. Sick people did not go home.
Lights Out
When the “bad case” was moved from my room to critical care, I was not sorry to see her go. More than anything, I wanted to escape. Sedatives allowed this, but my sedatives had been diluted from morphine to codeine to Valium, a near placebo. The other girl’s noises had kept me awake, trapped inside myself. I’d stare out the window at the New Haven city lights and listen to my roommate dying, believing she could not hear me, even had I been able to summon a word or two of comfort.
The nurses moved in a new girl, someone who spent her days in the patients’ lounge, where kids without visible ailments sat in their bathrobes, watching TV. I no longer recall what she was in for, but she seemed blasé about her time in the hospital, which turned out to be brief.
This new girl was a fireplug who swore and chewed gum and shared the pizza her parents brought. After Lights Out we’d stay up late talking, her bed curtains open. I began to feel less alone. One afternoon, toward the end of my hospital stay, Denise brought a boy into our room. She explained that she’d met him in the lounge and had told him about her roommate who could not move. He’d wanted to meet me.
Yes, I thought, yes, come see. The girl who cannot move. One look and you feel better about yourself, don’t you? I didn’t say that. I wanted to turn from him, this boy whom Denise called Jimmy, this boy who wanted to see. But I could not.
So, he asked, what happened?
Dummy, my roommate responded, I told you, she has a fucked up spine.
He asked how long I had to stay like that. Denise said she didn’t know. Not forever? he asked and I said around three months because I was tired of them talking about me over my head. Three months, the boy said, that sucks. You should get out of this room.
I looked at him then. A short boy, shorter than me, I suspected. Hunch-shouldered, with shaggy black hair that touched the wire rims of his glasses. An affectation of cool in a tartan plaid robe. He smiled. Did I want to get out of here? Go for a ride?
Already he was pushing my bed from the wall. I said what are you doing, we can’t and he said why not and then we were at the door, Denise looking up and down the corridor, waving us on. I was going somewhere with a boy I’d just met but I wasn’t afraid. The change of air, so slight, felt good on my face. We raced past the nurses at their station, past doctors and patients, orderlies with gurneys, grim-faced visitors, this boy, this stranger, taking corners, running down halls. I felt exhilarated—someone was finally making something happen.
He offered to take us to the roof and I said it would be too cold, which was probably true, but secretly I was concerned about getting in trouble, about being trapped with this boy. And yet, not. Part of me wanted to say, Yes, let’s escape, anywhere not here. He wheeled us back to the adolescent ward where a nurse asked what we thought we were doing. Just going to the lounge, he said, and she said, Make certain that’s all.
We watched television with the other kids until it was time for dinner. After the trays were cleared
, Jimmy came to my room. He was evasive about why he’d been hospitalized, saying only that he had “stomach problems” and would be operated on in the morning. When I asked what was wrong with his stomach he said he didn’t know, probably the hospital food, which, I agreed, sucked. But why was he eating if he was having stomach surgery?
You ask a lot of questions, he said.
We talked about music, school, our families. He was a freshman, half a year younger than me. His father was a judge, his mother stayed at home, he and his brothers, all older, went to private school in a town more than an hour from where I lived. The summer before he’d hitchhiked to Florida; I’d never been anywhere alone. He’d had girlfriends, knew all about drugs, could get me, he boasted, whatever I wanted though I did not yet know, aside from pot, what precisely that meant. We held hands, something I’d never done. Denise returned, complaining that there was nothing on TV. A nurse announced Lights Out and Jimmy kissed my cheek.
Denise sat by my bed, talking about Jimmy. He liked me, did I know that, did I know he didn’t have a girlfriend? Too bad he was leaving in two days. Two days? My stomach lurched in its plaster casing. Surely she was mistaken. He was having surgery, needed time to recover. But that’s what he’d told her, she was sure. Already I was missing him, feeling sorry for myself and wondering at that. Denise kept talking . . . you can always phone, it’s not like he’s in Alaska or something, maybe he’ll come visit and . . .We heard a scuffling in the hallway, slippers on linoleum. Jimmy ran into the room. He wanted to say good night, he wasn’t sleepy, who the hell went to bed at nine, what the fuck?
All the Difference Page 8