Chuck was in his late fifties or early sixties when he rolled into the therapeutic recreation atrium at D.C.’ s National Rehabilitation Hospital (NRH), where I was interning. He rounded the corner of the second-floor hallway and I tripped on the linoleum floor because I was staring at the flesh-toned breastplate, shaped like a butterfly, shrouding his internal organs. I wanted to peek under his sheath. He was leaning so far back in his wheelchair, it looked like a car wash fan was blasting him dry. He had a square face, closely cropped hair, and measured eyes that watched me gape as if he could see into me, or through me, kind of like a scientist, or a maybe more like a father. He was a new patient, someone to attend to.
I was a twenty-two-year-old about to graduate from Kent State University with a degree I didn’t quiet respect, but wanted to, in therapeutic recreation. As far back as I could remember, a part of me had wanted to be a nurse or a helper of some sort, but I found that other parts of me were in conflict with the helper part. It would be another twenty years before I had any real insight into the complexities of this yearning. In 1988 I just knew I had to finish my degree and graduate, and to finish my degree I had to complete an unpaid internship. After extensive pestering, I was able to convince my father to supply me with money for room and board. I suspected my father really didn’t have the money to give me, but he didn’t discuss finances with me, and I was willing to believe he could help because I was determined to go.
The blaring hole in Chuck’s body knocked me off balance, even though I had done lots of volunteer work as a therapeutic recreation major. I had square-danced with residents suffering from mental retardation at Happy Day School. I had listened to a woman with schizophrenia on the gloomy, gothic campus of Western Reserve Mental Hospital tell me stories a bird told her, only to realize later that there were no birds in her locked ward and the “upstairs” she kept referring to was inside her head. I had volunteered in a nursing home and sung songs with old folks in decaying bodies that smelled of perfume and mold, but I had not seen a body like Chuck’s that looked as if the center had been ripped open by shrapnel. Although I had chosen to attend Kent State because of its Vietnam era cachet, I had not been to war. And besides, we kept secrets in my family. We didn’t expose what could be ignored or reupholstered.
My parents’ marriage had festered during the previous fifteen years and finally burst open when my mother discovered she had cancer during my junior year. My mother said the lymphoma that formed a ball between her heart and her lungs was a result of the marriage. After a year of treatments, she began to grow new hair and left Erie to forage a life in California. My dad was moving. We each had to find our way, so I took the internship and headed from Pennsylvania to DC in the gray Mazda my father lent me for the summer.
Chuck was calm during our intake meeting. He noticed how my eyes kept roving to his chest and explained his situation to me with the patience of a teacher instructing his student. Chuck’s spine had begun to curl after his father returned from World War II with TB and transmitted it to him. Eventually, his spine became so curved he started to suffocate breath by breath. He had to choose between surgery on his spine or suffocation. He chose the surgery and went into the operating theater wondering if he would survive. He lived, but being under anesthesia during the day-long operation left him paralyzed from the armpits down.
Before the spinal surgery, he was already familiar with how to pull on the neck muscles to gasp at a breath. He knew the sensation of cement in the lungs and of sore rib muscles stretching for air. He knew the slightly fuzzy, dizzy sensations of a body that can’t inhale fully, the gnawing irritation of trying to get something that can’t be reached. This body, the paralyzed body, was something new, yet to be explored.
I didnot think about how much money I would need for the three-month internship. My father gave me enough for the first six weeks, the period of time I would be lodging in the dorms at Catholic University, and I was happy to let economic practicalities recede into the murmur of unformed words that hummed just beneath the surface of consciousness, to be dealt with later. For now, my living situation was good—my dorm was across the street from a cathedral with catacombs. I ate breakfast in the cafeteria every morning before reporting to National Rehabilitation Hospital.
I enjoyed eating in the semidarkness of the catacombs because it felt mysterious, and I wanted mystery. I had always looked down my nose at the suburbia I grew up in, judging the orderly homes and neatly mowed lawns. I wanted more excitement. I wanted a gritty urban house with dormers to peer out of, punks for neighbors, or gardens that tangled and ran wild. I wanted sundials and grottos hidden in whirling mists, like I’d read about in stories as a girl. I wanted to distance myself from the suburban development I grew up in, which seemed so ordinary.
As August approached, I had to admit to myself that the dorms would soon be closed to the summer students and I would have to find a place to stay. Chuck saved me. He asked me if I wanted to be his personal care attendant in exchange for free room and board. He was nearing discharge, and his wife, Berta, who worked nights as an emergency room nurse, wouldn’t be able to care for him round the clock. He needed a night attendant immediately. I was mostly unprepared for this work but had cared for a student with muscular dystrophy during my freshman year and needed a place to live.
I became Chuck’s nighttime caregiver and moved into a room on the second floor of his Silver Spring home. I stopped sleeping through the night, like a mother nursing her newborn because I had to turn Chuck at three-hour intervals. During the day, I worked a nine-to-five shift at the hospital, mostly with stroke patients. I played Uno with Mr. Der to reorient him to numbers and colors. He taught me how to shoot craps.
Not all my clients were recovering from strokes. One teen shot himself in the head and into a coma. Later on, as he emerged into conscious awareness, his mother began visiting, bullying him to get better so he could get back on the street to support her drug habit. Part of his recovery included relearning social skills, so I took him and his friends on the coma ward out to Friendly’s Ice Cream shop, where we practiced small talk. Say thank you to the waitress, Robert. Steven, put the napkin on your lap. Marissa, staring is not polite. I didn’t dislike this work, but I didn’t like it either.
I was confused. The myriad conflicting desires, impulses, drives, and fantasies that propelled me day to day led me places I wasn’t sure I wanted to be. I wasn’t sure what helping meant, even though the desire to do it kept nagging me. Yet I seemed to feel somewhat bored when helping people instead of satisfied. And I was glimpsing some of the nuances of helping that involve skewed balances of power.
I didn’t feel I was in control of the direction my life was taking. But this feeling was not unfamiliar. It was more like a weather pattern of anxiety I lived with – some kind of natural turbulence that ebbed and flowed. I did know that I would be taking off for Costa Rica in October, volunteering with the Peace Corps – an unknown, an adventure. I hoped volunteering with the Peace Corps would satisfy the restlessness inside that I wasn’t finding in caregiving. Meanwhile, it was me and Chuck.
We got into a routine. I arrived home from the hospital to find him sitting in his wheelchair, waiting at the entrance to the kitchen. He was bored and wanted to talk. I was tired and wanted to rest. I prepared dinner, dressed Chuck in his checked pajamas, prepared his catheter tray (which he self-administered because he could use his arms), hoisted him onto his bed, and turned him at three-hour intervals. This schedule prevented me from getting any sustained sleep, which left me in a perpetual groggy haze. I was up and turning at 12:00 a.m., again at 3:00 a.m., and again at 6:00 a.m. The midnight and 3:00 a.m. turnings included preparing the catheter and having a sleep-addled conversation. Shelly, I was just watching a movie about aliens. I heard the words but could only respond with uh huh...no...oh...interesting...oh. I got in the habit of lying down on the dining room carpet and dozing off into the hypnotic flower pattern while Chuck peed into the plastic container.
Chuck had to adjust to living his life in either his bed or his chair. This involved new routines. He was wide awake at 3:00 a.m. and wanted snacks. Toast with grape jelly. The first time I prepared early-morning toast, I cut it horizontally, and was scolded: The proper way to cut toast is diagonally, not horizontally. I became more deliberate about cutting toast at the correct angle, but began to nurse some resentment, which of course spawned feelings of guilt. How could I have any complaints? This guy had been paralyzed. I had nothing to complain about. I was supposed to be caring for him. So what if he watched me when I was in the kitchen, noticing every move I made, telling me the knives were placed in the drawer facing to the right, not to the left as I had placed them?
I began to suspect that Chuck had a controlling personality before his paralysis, and of course paralysis itself would turn anyone into a control freak. Lack of sleep, money, and life experience fueled my increasing feelings of resentment and confusion. What was I doing here? How did I get myself into this? Was this a pattern, pretending things were normal when they weren’t? Mom used to get depressed and go to bed for long stretches, and I pretended that was normal. Dad didn’t come home on Friday nights from his weekly sales calls, and I pretended it was fine. When my parents hardly communicated for weeks at a time, I pretended icy silence was the norm.
I had Saturdays off. Living in an upstairs room of the two-story colonial in Silver Spring, Maryland, placed me too far north of Catholic University to prowl the catacombs, and I was too exhausted to go into the city. So I found a small cemetery on the next block and took refuge there. It was summer, and the weeping willows were in bloom. I found comfort on my back, on a patch of grass, under an old willow. The stones were smooth. No ghosts seemed to be hovering about. The sun felt warm and cozy. I read my books (titles like Zen and the Art of Motorcycle Maintenance and Franny and Zooey) and daydreamed I was on a train whizzing through Germany or hiking in Kathmandu.
Chuck’s condition deteriorated. Part of my 6:00 a.m. Chuck-turning session included the insertion of an enema to keep his immobilized body “regular.” This involved a series of what I called “ministrations” that took about thirty minutes. What I remember most is not the enema detail – the suppository, the plastic gloves, the rectal insertion, the rest of it – but instead I remember that while I was giving Chuck his morning enema I also had to get ready for work at the hospital and make my breakfast. One minute my hand was on the toaster, the next minute on Chuck’s left ass cheek. I blocked it all out. It was easier not to think about it.
Chuck wasn’t “evacuating” properly. The enema wasn’t doing its job. I’d arrive home after work and find Chuck sitting in his wheelchair in a pool of diarrhea. I’m sorry, he would say. Luckily, they had a washer and dryer, so I peeled off his shirt, pants, and underpants and gooped them up and into the washer. I breathed through my mouth to avoid the smell. Then I washed Chuck, dried him, and put on his fresh pajamas for the evening. Sometimes he would have another accident ten minutes later, and we would perform the whole number again, as if the first time had been a practice run.
After dinner, I usually stayed with him in the living room they had converted into his home hospital bedroom. Chuck told me peculiar things about his experience. You know, Shelly, it’s not true you can’t feel your legs when you’re paralyzed. I feel them, but in different positions. For instance right now my legs are stretched out on the bed, but I feel them sticking straight up in the air at a 90 degree angle. How should one feel? How should one feel when one is wearing a new, and not familiar, body? Chuck probably wanted to feel his legs prone on the bed since that corresponded with what his eyes saw, but he didn’t. I wanted to feel happy and fulfilled at helping Chuck, but I didn’t.
The diarrhea got worse. After washing Chuck off and getting him on his hospital bed for the night, it would come bursting out again. This time the sheets would be soaked in rivers of shit, and I struggled to gather the sheets from under Chuck’s heavy body. It was even trickier remaking the bed with clean sheets while he was on it. The situation was becoming fraught because not only was Chuck adrift in diarrhea, it was backing up in his system, causing his belly to inflate like a helium balloon. When he stopped evacuating altogether, I asked his wife where it was going and she told me it was backing up inside, poisoning him.
We called the ambulance to come get him the Saturday morning my internship ended. He was returning to the hospital, and probably for good. You know, Shelly, I’m ready to die. I’ve prepared myself. It’s not that bad, really. My mind was blank. A jumble churned in my belly, in my chest: sadness, resentment, guilt, longing to escape, weariness, confusion. I had no words for Chuck.
Just before the ambulance came to fetch him, I climbed into my father’s Mazda and drove to my cousin’s apartment in Baltimore. She took me to Baskin-Robbins and fed me ice cream. This gesture stays with me because I found it so comforting. I didn’t know if Chuck had died, though I assumed he did. I never followed up. I just ate my mint chocolate chip ice cream and prepared for Costa Rica.