by Paul Guest
“Sometimes I think—” he said, his voice quavering and low. “Sometimes I think I haven’t been a very good father to you.”
He was tenderhearted and I knew this, but even more, he was prone to practical jokes, pretending one thing or another and never very well. I thought, at first, he was playing, mistaking the rawness of his grief, the largeness of it, for another dumb ruse. I began to say something, but stopped before any words came. His head had bowed like it was his neck that had been broken, incapable of holding up his face to mine. He shook with tears.
“Oh, Dad,” I said, shocked, for a moment forgetting my neck. “Oh, no, don’t say that. No, that’s not true, you have been good.”
He didn’t say anything for a while, crying that way. I felt helpless in a new, almost larger way. Whatever had gone before, however sad or terrifying, I knew that this was worse. I knew that my injury had changed everything and everyone, forever.
“I’ve been reading the Bible,” he said, when he could speak again, palming the tears off his face and from his inflamed eyes. “About Job. I want you to remember this verse.”
He reached for the Bible he’d put aside when I screamed, thumbed through the pages.
“Job 23:10: When He hath tried me, I shall come forth as gold.”
I didn’t say anything, though the meaning was clear.
“You’re being tried, Paul. We all are. But when it’s all over, you’ll be like gold. Believe that. Believe that for me, OK?”
I had been raised in a church that was largely filled with the old. A province of the dying. Its long hallways smelled like time. Everything I learned, everything I was taught, was apocalyptic, was mortal. Still, I’d never learned this verse before. I would believe it, I said, and my father kissed my forehead, lightly, like something broken, about to break again.
After the atrophy of my neck muscles while wearing the halo, and the painful period in which the muscles had to restrengthen, I hated how the surgery had cut through them. I hated that I was forced to wear a collar again. At night, the skin of my neck itched; the incision throbbed. Maybe, just maybe, I hoped, this was the end of this particular pain. Maybe, after miserable months, my neck would be whole again, no longer the focus of so much discomfort.
What I learned after surgery, when my time at Shepherd seemed to have no discernible end, that I might stay there forever, was that I was, all the time, being considered. Measured. When I no longer made any real progress, I’d be discharged, sent back to my home. The thought scared me. I would watch the large marker board by the nursing station, on which patients were moved from stage to stage. I feared to see my name move from its initial column. I watched other patients, some I knew, progress and then be marked for discharge. In a few days, they’d be gone. At some point, I would leave as well, leaving an environment in which no one was particularly different, and entering my old world, my old life. I’d be the changed thing, then.
Muscle spasms began to knot the muscles in my legs at night. All night, sometimes. The muscles would violently contract, and no medicine helped. Nurses would try at night to stretch them, to massage the muscles into stillness, but nothing worked. A nurse was once knocked to the floor while trying her best to help me, my leg resting atop her shoulder as she straightened it. Morning would come, slowly, and I would feel like a dishrag, wrung out by powerful hands. Doctors suggested it might always be this way: my damaged nervous system misfiring wildly into the night. Whenever someone said this, inside I shrank back from the thought. It was all I could do.
In the end, these long nights, when my legs seemed to be banded by iron, lasted two years, long past my hospitalization. There was no moment when I knew it was ending; only, a gradual subsiding, a storm of outraged nerves finally calming.
One evening in the middle of the week I was taken to a shopping mall with other patients. Accompanied by recreational therapists, we wandered about, a strange bunch of shoppers in wheelchairs, who couldn’t breathe, whose urine hung in bags from their chairs or on their legs, in plain sight, who were embittered, depressed, even suicidal and maybe dying. We rode up in the mall elevators, whole groups at a time, while women with bags from Macy’s clucked their impatient tongues behind us.
I loved to go out, to see some new place, and I didn’t much care that others watched us go by with mixtures of sadness, pity, and curiosity percolating in their faces. Old men would stop me, nosy and folksy all at once, their minds seeing the wiring of what we went about in.
“Young man,” one might say. “Do you mind if I ask you something?”
At first, this was confusing, alarming, dreadful. I had no idea what I’d say if asked about any number of topics: what happened to me, would I get better, did I believe in Jesus.
“Sure, I don’t mind,” I’d reply, smiling big, smiling always.
“How many miles you think you can go in one of these?”
I really had no idea, then. I made up estimates. Five miles. Ten. Twenty. Whatever I thought would satisfy them, send us both our separate paths.
“There are two big car batteries in it, so it goes a long way.”
“You don’t mean it,” he’d say, his voice a little distant, full of admiration. Something like this usually did the trick. I’d be blessed and notified I’d be appearing in his prayers and then we could part company, this bit performed.
And that night in the mall, eating ice cream fed to me by a therapist, I learned I’d soon be going home. When the cone was finished, the therapist hopped up, and his hand darted to the side of my wheelchair where a lever deactivated one of the chair’s two motors. He’d disabled the left one and I looked back to him, shocked.
“Time you learned how,” he said, hurrying away from me.
“How what?” I asked, annoyed.
“How to ask strangers for help,” he called back, leaving me there. With one motor disengaged, the chair would only drive in long loops, difficult to control. With every turn, I could see my group trailing farther off. I was nervous, and angry with him. I tried to follow after them, circling, circling, watching all of them vanish. Then I ran over something. Someone.
“I am so sorry,” I blurted, my face blushing instantly, my forehead dampening. It was a woman, tall and bookish-seeming, her eyes lost behind thick glasses. “They left me and they undid my motor and I can’t catch up to them.”
I was humiliated, blurting apologies to her. She put her hand to my shoulder, kindly, lightly.
“Oh, don’t worry. I’m fine. Completely. Believe me, I’m used to a wheelchair running me over.”
“Really?”
“My girlfriend has multiple sclerosis,” she replied. “Used to be in remission but a few years ago it came back. She has a wheelchair like yours. It’s older. We get around all right. Let me fix that.”
She knew what to do and then wished me a good night. “No more circles,” she said.
The prognosis for my recovery had never been exactly certain: at first, there was every reason to think I’d never move, never feel anything again. When that began to change, when my legs began to respond to therapy, and I could slowly extend them with light weights wrapped around each ankle, therapists wondered aloud, as we worked, if I might recover enough to walk again. Perhaps with a walker or crutches or other prosthetic devices, braces, splints, and dozens more, which would in time fill my closet and make of it a sad museum of hope. Perhaps, at least, I might be strong enough to push my own chair, and feed and bathe and dress my own body, however compromised. Perhaps any hundred degrees of recovery, of return, of resurrection, as though the life I lived were not exactly a life, but something else, in between, a limbo in which happiness was not quite possible, a hypothesis, a theory exhorted, but in half measures, in half consolations.
Therapists like Steve with his boundless empathy, and others I’ve forgotten, were stewards of my body and my hope, and between us passed the pain of never knowing when the end to that hope had undeniably come.
And so I knew that my t
ime had come when nurses informed me I’d be taking my first trip back home for a weekend. I knew this visit was rehearsal for the day I was discharged, and for all the days which followed, for however long I lived with my family, dependent upon their care, and though no doctor would say it, that span of time might come to be forever.
I found out exactly as I feared I might. On the board beside the nursing station, my name had been moved into the last column, marked in red. I stared at it, deciding how I felt. Nearly five months of surgery, therapy, and daily pain had passed. Indignity after indignity and complete loss of privacy. Hundreds of strangers by then had seen my naked body, either in bed or in the hallway while I was rolled to one of the floor’s several communal showers. It hardly mattered anymore.
But to return home? It had been a far off, undetermined day. Now it was no longer. Now I’d be sent home for a weekend visit, to live with my family again, though by everything that had happened we’d become impalpably estranged. I asked a nurse doing paperwork when my visit would take place.
“This weekend,” she said. “Your parents will pick you up on Friday.”
She returned to the work. I returned to my room, nervous, and said nothing to anyone.
When my parents came for me, I was waiting for them in my room, seated in a manual wheelchair, the kind that had to be pushed. Our van wasn’t accessible: after being rolled inside the van on portable aluminum ramps, I rode the hundred miles home, reclined flat, staring up at the roof. At home, no ramp had been built yet; I couldn’t go upstairs. I had to enter the house through the garage and into the downstairs den, connected to my old bedroom, and there spend the weekend, fed by my mother while everyone else, my dad, my three younger brothers, ate in the kitchen. There was no room for us all to be together; there was no other way.
The twins, Bo and Clay, were still babies, little more than a year old, and my middle brother, Chan, was only about eight: he said little all the while, nervous, hidden. My home felt unchanged. The walls downstairs were the same cheap wood paneling and the furniture was still mismatched; in the carpet was the same stain I’d made with yellow paint years before, up late with monster movies playing on our ancient television set.
All was the same, and, really, wasn’t I also unchanged, in some essential manner, beyond the damage I’d brought to myself? No, I thought, I’m not.
Saturday night, late, after a day and a half of watching movies, eating meals cooked by my mother, visiting with my family, I lay in bed, sick, my stomach spiraling about itself. Whether it was the stress, the worry of the visit, or the change in diet from institutional blandness back to the old meals of greens and fried potatoes, corn bread and sweet tea, or a fear all this could go badly, I don’t know. It was late, the room was dark except for the green luminescence of the digital clock beside my old bed, where my parents had lifted me into bed from my chair, and in my old bed my bowels had moved, staining all the sheets, my legs dirtied by each effort to move, to turn away.
I’d called for my mother and she had come, clearly tired. I thought that there was only one thing worse in all the world than this: not the asking for help, but its need.
“I’ve had an accident,” I said.
“A bowel movement,” she stated as much as she asked.
“Yes,” I said, hating myself.
She was tired, moving through the fathoms of interrupted sleep, but she set to cleaning me, to changing the sheets. It took a while and we both were silent.
“Oh, Mother,” I whispered near the last. “Am I a burden? I don’t want to be a burden.”
She snapped awake, stopping for the moment.
“A burden? No, how could you be? How could you be? Don’t ever think that.”
The next morning I left my home and family again, and on the road to Atlanta, reclined in the wheelchair, my sadness faded and a relief grew. I wanted to hate it, but I couldn’t, not quite.
chapter SIX
It was Halloween the day I was discharged. All around me, patients rushed about in makeshift costumes: spray cobwebbing and aluminum foil adorned their chairs. Balloons tied to them bopped in the trailing air. For the first time in almost six months, no nurses woke me early, sponged me clean before I wanted, and dressed me for the day. My parents were there, packing my things, gathering my clothes and taking cards I’d received down from the wall. I had little to bring home. It didn’t take long to erase my presence. I felt sad to think another person would be admitted that day and assigned the same space that had been mine for so long. Sad for that unknown person’s fate, for the rough months which awaited him, but sad, really, that I was leaving. No more complex than that.
I guess it was fitting to leave on Halloween. A day defined by masks. As trying, as painful, as my time there had been, it was an environment in which one could safely suffer and recover, away from the outside world. Now there were no illusions about the world to which I was returning, while all around me were patients pretending to be something else. Someone else. I said good-bye to a few nurses I knew, though no one who had been good to me seemed to be around. I looked into the gymnasium, which was half a party and half what it would always be, people struggling to reclaim their bodies, their lives.
Working at a machine designed to increase arm strength, Josh was absorbed in work. When I saw him, I felt my sadness, for a small moment, double. We had hardly been friends, just roommates separated by curtains, but he had been kind, a voice at night to laugh with, or complain. I went up to him, to say whatever good-bye I could. My eyes ached and I wanted now to leave, to go, to make this essential break with this place and the people in it.
“I’m leaving,” I said, the best I could manage, tearing, my breath in raspy stitches.
“Hey, hey,” he said, his right arm still strapped in. He couldn’t move. “You’re going to be fine. Don’t worry. You’re the only twelve-year-old I ever liked.”
He clumsily smacked my knee with his weaker arm. I laughed and then I left, descending in the elevator with my parents, who helped me into the van. We pulled away.
It was terrifying to no longer be a patient. To no longer be in rehabilitation. In recovery. Unspoken, but quietly feared, was the assessment, by doctors, nurses, and therapists, that you had reached an endpoint in this process. That your rehabilitation had come to its expiration date. That nothing more could be done. What awaited was the rest of your life.
My parents had lifted me into the front passenger seat of the van. I could see the interstate spooling away as my father drove and we talked with my mother, seated in the rear, behind my wheelchair where it sat in the van’s middle. Gradually, some of the gloom lifted from me: I hadn’t sat in a car seat in months, since before my accident, and somehow it was gladdening to see the roads and cars and the underpasses slipping behind us. It was some little vestige of an old life, an activity which possessed no meaningful context, and yet I felt like each mile eased the worry just a bit. So much still loomed: where at home I’d sleep; when I’d return to school. The weight never left my mind and I wanted to know. I asked my mother.
“Where am I going to sleep? Not downstairs?”
“No, Chan has traded rooms with you,” she said, leaning forward. “He’ll be downstairs. He’ll have your old room and the den. I know you hate that, but it’s best.”
“No, I know,” I replied. It was best. The only bathroom I would have any access to was upstairs, along with the kitchen and my parents’ bedroom. It was the only solution, though the bathroom was far too small for my wheelchair to even fit. My parents would have to lift me from my bed, naked, and carry me into the bathroom so that I could bathe, empty my bowels. Our house was fifty years old already, and small. I had understood, long before returning home, that it would be difficult for me to live there. I saw it in my mind and knew what would have to be done. To hear its confirmation was no surprise, yet it felt like one to a small degree.
“Chan isn’t too crazy about it, but he understands,” my father said.
&nb
sp; “He agreed,” called out my mother from the backseat of the van. We weren’t far from home by then. I began to better recognize the low hills and the fields strangled by kudzu and the rare barn with SEE ROCK CITY emblazoned upon its roof.
“I don’t want any sort of party,” I said. “You remember that I asked that, don’t you?”
“We do, don’t worry,” said my father, looking into the rearview mirror as he turned off the interstate. “We’ll be home in a few minutes.”
“I just don’t want to deal with that. Not now. Not today.”
Then my father pulled over on to the soft asphalt shoulder of the off-ramp and switched on the van’s flashing emergency lights.
More lights, red and blue, began flashing behind us. A knock at the driver window. At first, only a blue field of officer uniform, then, lowering his face to ours, a state patrolman speaking.
“Is this the Guest family?” he asked, all gravity.
My father said that it was, that surely he hadn’t been speeding.
“I’m here to escort you. Welcome back home, Paul.”
He turned and went back to his cruiser, starting up the siren before pulling out, waving us to follow him. This might have been the last thing I had ever wanted, if I could have conceived of wanting this. I had no idea what it was, why a police escort blared through the streets of my small town. I wanted not to die but revert to some point in time when I was nonexistent.
My father was pleased by it all, driving slowly behind the car. He laughed, patting my shoulder vigorously, making turn after turn. People looked up from their yard work or their reading on their porches. Other cars pulled to the side of the road. Some waved, though they had no idea what was passing them. I hadn’t said anything yet.