by Paul Guest
Worse by far was the slide show of bedsores, in which the color, mercilessly, had not been drained away and blood-red were all the cavities which had opened up in the flesh of anonymous asses. There were the debridements of necrotic tissue and the queasy white flashes of bone. Unseen faces, always. Only what had been ruined by carelessness, depression. One slide lingered on the scalded foot of a man who had not checked the water’s temperature before soaking in it. It had boiled liked a pot roast and looked about the same before being amputated.
We left the room, going back out into institutional light, defeated.
I was twelve and sex was an inconstant beacon, and it was impossible, then, to know if its light drew me through the darkness of adolescence to it, whatever that might mean, or whether it was the herald of something unknown, unknowable, tumbling headlong toward me. I was twelve and the youngest patient in the hospital. If anyone might claim childhood still, even in the face of the paralysis we all were afflicted with, it was me. I was a child, twelve years old, expert already in the infinite ways I could be ruined, how I’d set myself at that edge of that blade.
But I hadn’t yet learned the end of love. Or, at least, its unlikelihood, its sad truncation. After the videos of our song-and-dance bowels, after the grisly slide shows, a last video remained, transferred from film decades ago, maybe epochs. We were gathered up in the dark one last time to learn the crater impact our injuries would leave in our sex lives. If they persisted. If they were recognizable as such. If our bodies even recognized the neural play of sex.
Barely better than low-rent pornography, the video showed actors who marched lockstep through the lines and the actions and seemed to want this awful thing over. If the video was in any way helpful, with its suggestions of mutual masturbation, with its call to reconsider intimacy and its quiet insistence on the long shadow of loneliness, it wasn’t helpful to us, who were silent by the end. Instead, its sullen depictions of the possibilities of sex felt more and more like libidinal hazing.
I just felt numbed, injected by shame. I thought of my mother, Pentecostal and furious, hearing I’d been included in this group. Nobody else moved.
A naked woman, with dark hair vining down her back, stood before her partner in a wheelchair, also naked. She put her arms around his back, like a mighty hug, and began rocking back and forth, trying to lift him up, until they spilled into what looked like a hotel bed. In another scene, she knelt before her partner, seated again, and fumbled with his jeans, fishing out his half-limp penis: she gripped it perfunctorily before taking it in her mouth. Later, back in bed, she straddled his face. There was little sense to the sequence and less that was sexy. Dark mutters ran through the room. The air grew leaden.
“Fuck this,” one of us barked, then shoved through the door.
As we began to disperse, we took with us each a share of that grief, like a latent seed, a weight we’d carry, that would grow.
It was easy to know the most serious ways in which my body had been changed. But time slowly taught the intimacies and embarrassments of the injury. One night I had to lie there, sick to my stomach, on my left side, unable to move. The curtains were pulled and all light extinguished, save one little lamp, clamped to the headboard. The bulb burned bright; the back of my head and neck stung, sang out. And in my head, inside it, pounded a metronome said to be my heart. Each pulse lit little stars in my eyes. I was sick. I wanted to vomit, right there, right there, into the sheets and the soft foam beneath.
A nurse, a grim woman, spoke-limbed, worked behind me. When I moaned she shushed me, pulling from me thick, claylike stool.
“It’s like peanut butter,” she said.
You begin this in mystery, in confusion. Maybe you have no chance of ever getting better. Maybe you might improve. Maybe one arm begins to function once more and you learn to feed yourself all over again, like a child. Maybe you begin to breathe easier, without mechanical assistance, and slowly you’re weaned from the respirator. Maybe not. Maybe the rest of your life will be tethered to that machine, to strangers who care for you by caring for it.
You are the machine. The damaged machine.
After the doctors in the mornings, and after the nurses who come with updated orders for your daily treatment, after you are washed with old rags, and the night’s clear issue of urine drained away, you are dressed in soft clothes so your skin won’t scratch, won’t break down, won’t turn to the sores which horrified you. You’re sent out to therapy, to be laid out on mats, all the joints turned, all the tendons stretched, all the muscles contracted, by will if you can, or by electrodes buttoned into sponges soaked in brine, placed atop weak areas. The low current tingles and you wait for a reaction.
But this is all waiting. All of it. You wait. And they wait.
To see what will happen, what will change. For that to run its course, to plateau.
The first upwell of sensation, like water evaporating from the skin of my sternum, had begun to spread, down my chest and across to my shoulders. It was easy to miss at first, the way a room at sunrise slowly begins to swell with light. Easy to persist in the numbness to which I’d grown accustomed. And, then, a feather of air, a therapist’s hand, water from a rag: all at once, they’d register, at first in disbelief, and then in careful degrees.
In the first few weeks at Shepherd, when my nervous system began to recover from its trauma, I would call home to tell my parents every small change. It felt good to dare hope, it felt good to give them encouragement. A nurse would hold the phone to my ear, after working the receiver through the scaffold of the halo, and dial the number home.
“Hello,” my mother would say in the days before the ubiquity of caller ID.
“Hello,” I’d say back, a charged moment one never becomes better at managing.
“I have some good news,” I’d say. And, whatever that good news was, whether I could feel the ring finger on my left hand, or the pain of a needle sliding into my flesh, I would tell her.
If my father was home from work, he would listen in.
Whenever there was good news, there were also tears. Tears like a second language, tears like the only one.
At first, physical therapy was a passive activity: though I slowly began to feel more and more of my body, and in varying degrees of intensity, no muscle control had returned. Each morning, following breakfast, patients would be transferred onto raised mats by therapists. If the patient could move his arms, he worked at strengthening each muscle: biceps, triceps, deltoids. If he could move his legs, if his spinal cord had not been severed, he exercised them. I could only lie back, while a therapist fought against the natural tightening of my hamstrings, the contraction of muscles I no longer used; in the distance, a stereo played a local radio. I chatted with the therapist, watched the ceiling, waited for three hours to pass, when we had lunch. The sessions often had the communal striving of an exercise class, and though I was not able to participate in the work, I was glad to be among these people, a part of a large, fragile hope.
At night, late, when the doctors were nowhere to be seen, and nurses moved quietly from room to room, turning patients from one side to the other, to relieve pressure from bony prominences, was the only real time that wasn’t regimented. I’d stay up late watching the little television set that swung over my bed, or listening to cassette tapes with headphones. Bill Cosby, Phil Collins, Jimmy Buffett—tapes passed around, a fluid library with materials no better than the collective tastes of the patients. I didn’t care. All I wanted was a shadow of privacy.
Soon I could feel both arms, my chest and stomach. And then my legs, like ghosts. The way one might strain to better hear a distant sound, all concentration upon it, ill defined, was akin to how my body began to return to halting operation.
One evening, while the others around me slept, my leg spasmed, drawing up. Once, then twice. A third time. I tried to cause the spasm again. I could. Neat, I thought.
The next morning a physical therapist named Steve poked his
head through my curtains. When needed, he helped dress patients. Rangy and tall, funny, he was a favorite. I was glad to see him.
“Look what I can do.” I yawned, drowsy. My right leg lurched, too stiff after sleep. I tried again. This time, it bent up, an inverted V beneath the sheets. Steve stepped in, sliding the curtains shut again, leaning with both arms on my wheelchair.
“What’s that you’re doing there?” he drawled casually.
“I can make myself, my leg spasm.”
“Let’s see that again,” he requested, quietly. “Try to see if both will, uh, spasm for you.”
Both legs drew slowly up. The left quivered, weaker than the other.
Steve’s face was all smile, intensely so, and for a second he was silent, considering me. “What?” I asked, still morning dim, confused.
“Oh, Paul-y,” he said, stilling my shaking knee with his large hand. “Paul-y.”
I could move my legs. Barely. They trembled, a symptom of their weakness, of the muscular atrophy which had already set in, but symptomatic also of the still inflamed spinal cord, which pressed against the inner spinal column, interrupting nerve pathways. Whatever I hadn’t ruined back in May was slowly, with the lessening of inflammation, reconnecting the body with the brain. Day by day, it seemed, I improved.
Except for my arms. No, except for one muscle, the deltoid, responsible for lifting the arm away from the body. Without them, nothing else would work. No matter the exercise I tried or the amount of time I spent hooked to machines running electrical current into the muscle, there was no discernible improvement, no increase in strength. No, they slowly atrophied, losing mass, melting away beneath the skin. With time, my shoulders visibly narrowed.
I could operate an electric wheelchair now, guiding it with my right hand. But that was the limit of what I could do with either arm.
The rest of that summer, and for years afterwards, I tried to regain their use, though I knew, but never said, it wouldn’t happen. Even so, I was lucky. Luck beyond luck gilded me. If I couldn’t lift my arms, I could breathe. I could feel. I could move more of my body than any diagnosis could have ever sanely promised. Great grief filled me up, I seemed to breathe it, but what freed me was this: if my arms never worked again, never dressed myself, or combed my hair, if I depended on others to do these things for the rest of my life, I no longer had to be, or even could be, who I once was. What I once was. I was broken. And new.
Nine weeks came with four long bolts screwed into my skull. I wanted the contraption off me. The whole time I hadn’t showered: it had been impossible, encased in fiberglass and steel. And my hair shone with oil, dark and slick, glued to my scalp. After precautionary X-rays, the halo was approved for removal. I knew my neck muscles would be weak; doctors had warned they’d atrophy, after two months in which my head had been supported by bars.
An orthopedic surgeon came to my room with a tray of tools. I was in my wheelchair. He reclined it all the way back. Then he injected anesthesia into the skin near each bolt. With a torque wrench, he removed each one: there was no pain but I felt each one loosen, a weirdly abstract notion, as if it weren’t really my head, my bone, that had been drilled into.
When all four were removed and put aside, the bars were disconnected from the vest and the halo lifted away. I lay still. The vest was unfastened. Finally, all of it was gone. Another collar was placed around my neck: I’d have to wear it until my neck regained its strength.
“Are you ready to raise up?” he asked. “Your neck will be very weak. Your head will feel like a huge weight. OK?”
I smiled. He was right. My head seemed enormous, impossibly heavy, and the muscles in my neck, so weak from months of disuse, screamed, burning. Days would pass before the pain would, when I’d begun to regain basic muscle tone.
He cleaned the holes in my head with gauze, mopping the caked gore that had built up over time. From each wound he tweezed long stray hairs and laid them aside.
Often I was bored, listless. The hallways would empty, and the floor go silent, save for the continuous weather of muffled machinery, respirators hissing unseen, monitors translating sickness into beeps. Patients withdrew into their rooms. Once I passed the room of a patient who had been injured a long time, years, while a respiratory therapist snaked a long, thin tube through the hole that had been cut into his trachea. The machine connected to the tube whirred and snuffled. A vacuum noise. The woman was drawing out the mucus his body couldn’t expel. I could see it run, cloudy, thick, through the tube, away. His face was lunar with acne and he grimaced, clearly in pain.
When she was finished, she pulled a table back over to his chair. On the table was an easel, a magazine stand fixed with a mechanical arm to turn pages.
I left when I saw he was reading Playboy.
The gymnasium at night was always empty but the stereo was usually left on, filling up the space with music. While driving my wheelchair in long circuits around all the mats and between the exercise equipment, I’d listen, humming along. Through the windows I could see Atlanta’s skyline, which stood on a high ridge above the surrounding land. Whole evenings I lost in those windows, while top forty played all around.
That night, the night I watched the phlegm be sucked from anonymous lungs, I went into the gymnasium; I could hear music. Lonely, sad for what I’d just seen, I was hoping someone might be there to talk to. I looked around but no one was there. I turned my head, scanning the room, and when I did, something gave way inside my neck. There was no pain in it. Not really. But it stopped me cold, right there in the gymnasium doorway, and though I had no reason to think it, I knew then that all the months in the halo, with my spine held immobile, had been for nothing. That I’d soon face the surgery we’d hoped to avoid. There was no real pain. Just an undeniable wrongness, a sense that something had shifted.
It scared me. I asked to go to bed early. I told no one.
When my parents were waiting for me in my room, in the middle of the week, I wasn’t surprised. The day before, my spine had been X-rayed; I had hoped against all hope the results would be fine, though I knew my neck felt wrong, unstable.
“What are you doing here,” I said, less like a question than they must have expected. I’d been downstairs in another patient’s room, inspecting his new wheelchair, an awful purple.
“Yesterday we got a phone call,” my mother began tentatively, looking to my father, whose skin seemed made of old ash. “There’s something still wrong with your neck.”
I had known it. But then I couldn’t say anything, too scared, too miserable to consider it. A part of me was angry, too: angry that the halo hadn’t worked and angry all that time had been for nothing. But it was eclipsed by the fear I felt, which had been seeded one week ago.
“You’re going to have surgery tomorrow,” my father said. “It’s urgent.”
“When?” I croaked. “Can’t it wait a day or two? What time tomorrow?”
“Early. It has to be tomorrow. It has to be, Paul. This isn’t something that can wait.”
“We’re going to be here,” my mother said. “We’ll be here the whole time. When you wake up, we’ll be waiting. And everything will be all right.”
If I had ever been so swamped by mortal sadness, I don’t remember it. The surgery seemed a gross insult, a piling on, pain added to so much pain.
I smiled. Or tried to. Tried again. My parents did the same.
When they came for me, it was early. Not quite light. I’d slept well, after a while, after my parents had left for their hotel room. They’d see me in the morning, they promised. At first, in the raggedy fog of waking, nothing was wrong, nothing seemed amiss. Then there were my parents again, stepping in with coffee. We spoke a little while. Nurses soon came, administered a slight sedative to calm me. The last thing I remember is my mother’s face.
chapter FIVE
Up I swam through the floodwaters of morphine-deepened sleep, dreaming nothing, and opened my eyes. The ceiling like sky drifted. I was
covered to my shoulders with a warm blanket. Everything seemed to glow. To be light like an incandescent bulb. My only thought was that I had not felt so good in months and nothing hurt and then I sank again. I wouldn’t wake back up for twenty-four hours and when I did, it would be awful.
Nurses had come to turn me from my back to my left side. Beneath me was a folded sheet; I could be turned by pulling one side of the sheet against my body. One of them spoke.
“Time to turn, honey,” she said. “This may hurt a little.”
I could see my father, seated by the window, reading in its light. He began to stand up, as if he might offer his help. Then they turned me.
Pain cut through me, so severe I was amazed, stunned by the instant eradication of all the ease I had felt. The incision blazed. I had been opened up from my hairline to my shoulder blades and then closed with staples, so that the nape of my neck resembled a long, ghastly zipper.
Accustomed to pain, to great pain, even, I was, nonetheless, in no way able to ignore it, push it back. I screamed. Wept. They didn’t stop. Could not. As much as the turn hurt, the nurses had to do this and I needed it, no matter the discomfort. When they left, I sobbed. My father came to my side, leaning in close. He was a young man still, tall and lean, with hangdog eyes, though I had no sense of that perspective. He was my father. He touched my shoulder, almost, his hand stopping in the air. The pain was beginning to fade to a wracking throb. My face was tacky with tears.