Water from a Well

wheelchair

By Gina Kelly www.ginakelly.com

By Sarah Pape

Roger lived in the kind of house I coveted: a swatch of deep green manicured lawn, the clean white paint of a new development, and high ceilings. The higher the ceilings, the more desirable the home. That’s what I thought at nineteen, living in a two-bedroom apartment where, when you flipped on the light, cockroaches scattered. This was our first place as a family—Rik, me, and our seven-month-old baby, Sylvia. We’d just gotten married and everything we owned was second hand. We would go to yard sales every weekend, holding things up to each other, as if to say, “This? Is this what grown ups own?”

We bought a little tabletop ironing board and an iron so that I could press Rik’s thrift store button-ups and slacks. He was working at a dealership trying his best to sell cars to people who wandered onto the lot. He didn’t have the bloodlust for it and would come home dejected and wrinkled after sweating all day on the blacktop. We were living off of meager commissions and mercy checks from my family, waking up every morning with the dread of having to make another call—either to the bank to argue overdraft charges or to feign a casual tone as I worked up the courage to call my mom or grandparents to ask for more.

Late one night, I picked up the worn Want Ads that Rik had fallen asleep with and began looking for something I could do. I only had one year of community college under my belt, but I could type and write. I began feeding a fantasy of becoming a secret shopper or someone who “makes money from home,” going so far as to pay fifty dollars to get the catalogue for products one could assemble. It turned out to be dollhouse furniture. They would send you the pieces. I did the math and realized it would take thousands of tiny desks and bunk beds to even pay the electricity bill.

Then I saw Roger’s ad in the Personal Services section: “I’m a disabled man in need of light cleaning, grocery shopping, and assistance with physical exercise. Some experience necessary.” We had only lived on our own for a few months, but I was learning quickly how to manage the domestic. I wasn’t meticulous, but we cleaned enough to hold the roaches back. I knew how to shop on a budget. In fact, some nights I would take the baby and go wander the aisles of a store, loading up the cart and then putting everything back. I was rehearsing for the day that we would have enough money and could buy whatever we wanted. That’s what success meant to me then. That’s why I was practically salivating when I pulled up to the white tract house when I arrived for an interview the next day.

•••

People in wheelchairs don’t scare me. My grandmother, who had contracted polio at twenty-five, lived her life—and mine—on wheels. My cousin and I would fight over her chair when she would get into her recliner for an afternoon nap, using a slide board to bridge the distance between the wheelchair and her destination. Careening down the long, marble hallways, we could balance on the back wheels, spinning in circles. As we got older, Nonie needed more help getting in and out of her chair. They eventually bought a nylon sling that hooked to a manual lift. Once you hooked each corner to the mechanism, you pumped a lever that incrementally lifted her into the air. She would hang there in the cradle of the nylon sling as you wheeled her to where she wanted to go.

It was my experience with this that convinced Roger to hire me. He was impressed that I knew what a Hoyer Lift was and that I could easily identify all of its parts. That first day, he showed me around his huge three-bedroom house: the office where he had a massive computer set-up with voice recognition, his kitchen with flats of Gatorade and Mountain Dew, his bedroom with one wall covered from floor to ceiling with jerseys and t-shirts signed by rock stars and athletes. He loved heavy metal. His long red hair was tied back in a loose braid, something that would eventually become my job to maintain.

I met Roger on the decline. The first few evenings when I came to work, he had me help him into his hot tub, after which I would dress him, then hook up the lift and place him into the waterbed. It was an ordeal, but the process promised to bring him some relief from his muscles, strung tight and prone to spasms. Roger had always been afforded any technology or machinery that could help him function independently, but he had advanced cerebral palsy and his body was nearing its limits.

There were a series of exercises and stretches that he needed me to assist him with. He would lie on his back, and I would put one leg up onto my shoulder and push it toward his upper body. It was part porno, part gymnastics coaching. His already contorted face would twist into agonized knots as he slurred for me to keep pushing. Then I would take turns sitting on his thighs, straightening his stiff, bent legs. Most nights, he would fall asleep with me on his lap, some infomercial droning from the TV next to the bed, the remote out of my reach.

And he coughed through everything. After many bouts of pneumonia, he had a compromised respiratory system and he would hack to the point of vomiting. Nothing seemed to help. It would just eventually stop, and he’d lie there panting from the effort of it all.

At midnight, I could go home. I ached toward those illuminated numbers on his nightstand, littered with cough suppressant, bottles of Gatorade, and empty bottles for him to pee in during the night. My breasts would be rock-hard and full of milk by the end of my shift, and I would selfishly hope for my baby to be awake as I maneuvered through the empty streets toward our tiny apartment. Just to take the pressure away. To soften me enough that I might fall asleep, still hearing, in my sleep, Roger’s incessant cough that sounded like dying.

As we worked to get him ready in the mornings, I had to train myself to not ask if he was okay. No matter what coughing, vomiting, muscle spasm that had just occurred, Roger would nod vigorously that he was fine and wanted to move on to our next task, undeterred by physical discomfort that would undo most people. We had more important issues at hand. He relied on me to not only dress him but to make sure he looked good.

“This one?” I would ask, holding up a pressed black button-up shirt.

“Nope. K-k-ke-keep looking,” Roger urged me deeper into his walk-in closet, decades of clothing lining each side.

I held up two more, “Either of these?” Vigorous head shaking. No.

“Wh, wh, what, what would your hus-hus-husband wear?”

I thought about Rik and the pile of faded black band t-shirts he pulled from most days, and then the ironed polos on hangers from his short-lived career as car salesman.

“Probably something like this,” I assured Roger, holding one up with the tags still on, the fabric heavy and liquid over my hand.

“That’s g-g-good then,” he relented, as I bent each of his arms and slipped them through the unwilling holes, buttoning the shirt from the second one down, revealing just a hint of fine red chest hair.

Roger was a two hundred pound man, and although it may be unfair to make the comparison, there was something seamless about my days diapering and clothing my infant daughter and my nights spent cleaning up vomit and squeezing his unrelenting legs into sweatpants. Sometimes, I was there until the day’s end. Others, just to get him ready for school in the morning. He asked me if I might be able to type his papers if he spoke them to me, and I agreed. I said yes to everything he asked, whether I could or not. I needed to be indispensable to him. Every hour meant another $4.25 on my paycheck.

•••

His tract home was near the grocery warehouse. I shopped there after work sometimes when everything but the forklifts had emptied the vast aisles of mealy produce and Spanish generics. At this hour, there was no one around to see me pull out the stack of WIC vouchers I used to pay for our peanut butter, milk, and cheese. Sometimes Roger would give me a twenty to pick up a few things for the next day. Amongst his line of plastic bottled drinks and frozen dinners, I would occasionally throw in a candy bar or Chapstick. I wouldn’t tell him and he never noticed.

Was this stealing? By definition, yes. Yet, sitting in the empty parking lot at one in the morning, breaking off pieces of chocolate and letting them melt slowly between my sore-from-grinding teeth, it felt like a reward. A bonus for getting through another day of a life I had never imagined. I told myself, Roger would give this to me. He often offered me food or a beer. I never accepted his offers, but I took this as permission.

Sometimes, I stole time. I would add twenty minutes to a shift. Not much, but over the course of weeks, would equal to days. I’ve earned this, was my mantra leaving after midnight, sleeping for a few hours between breast feedings, and then getting back into the car to meander back to that big gleaming house. Tiptoeing in, he would often still be sleeping, and I would fear that he had died. Aspirated in a coughing fit in that stretch of hours that I had gone home. But then he’d shift or fart or just be lying there with the TV on, and I’d wheel the lift to his bed, roll him side to side to place the sling, hook in and begin pumping the handle as if getting water from a well. He would fold into a perfect bundle, rising above the twisted sheets and sloshing bed.

I wasn’t the only one who worked for Roger. He had other girls who would do the day or night shift, depending. None of us could work more than twelve hours a week, so I asked for more clients through the agency.

By this time, Rik had been let go from his third dealership and was collecting unemployment. Once a week, he would wake up at five a.m. to inquire about a tree cutting job one town over. Each time they would tell him to come back next week, so he’d drive home and crawl into the California King bed that had been passed down from my grandparents, to my mother, then finally to us. He’d stay there with Sylvia, sleeping, and I would rouse to get to another shift.

Most of the work was bland—helping Joyce, a high-functioning woman with Down Syndrome, to create a budget; making sure Ron got his three-wheeled bicycle to the shop for a new set of tubes; cooking a week’s worth of meals for Susan, a fifty-year-old woman blind since birth.

But then there were cases like Martin, who was so large he couldn’t wipe his own butt and had stains running down the back of his pants. Porn-addicted and developmentally disabled, he’d sit in his oily tan recliner, a gallon of milk in his grip, asking me again and again if I liked “man and woman love movies.” Because the smell was unbearable, the agency arranged for him to take public transport to the grocery store to meet me. I would follow him through the store, listening for his grunts of agreement as I pointed to various foods.

•••

As my clientele was growing, Roger began getting sick more often. He dropped out of school and spent his days at home. I would sometimes stay, off the clock, to watch a movie or listen to some music. It was hard to understand his words, slurred and truncated by gasps and hiccups, but being in each other’s company was simple. In this way, I was escaping from home and what waited for me there. There was no middle space any longer, just layers of need and necessity and care, often beyond what I knew to do or to manage. Like Susan’s face when I attempted to cook eggplant, soggy with canola oil, bitter and tough. Like the unimaginable softness of her shoulders when she would ask me to rub them for her, little hums of pleasure emitting from her at being touched.

I was running late to Roger’s one day, exhausted from being woken in the middle of the night by police. The downstairs neighbors, a reclusive Asian woman and an old man who drove his Cadillac up and down the circular driveway, called the police with a noise disturbance. “There was a report of a baby crying,” the officer informed us. We were bleary eyed, holding our rosy cheeked, feverish baby.

“They do that,” Rik offered, and they apologized, citing our neighbors as having called frequently on past tenants. I had overslept my usual alarm and I knew that one of the other girls was getting Roger up that day. It would take me a half hour to grab his groceries and head over. I dawdled at the store though, completely unmotivated to face the bottles of cold piss on the nightstand to be emptied, the chunks of dandruff I’d have to comb through to tie his hair into a ponytail, or the crusted toothpaste at the corners of his mouth, waiting to be wiped away.

I was readying my excuse for being late when I clicked the lock and heard shouting. Incoherent and muddled as his speech was, I could clearly distinguish, “Help!”

I ran through the maze of hallways and rooms to find him in the bathroom, crumpled to his knees and hanging by one arm from the metal bar next to the commode. His entire body weight was held by the torsion on his upper bicep and bone, both spare to begin with. I tried at first to work his arm out of the tight space, but I realized quickly that the gravity of his body was too great. I’d have to lift him up and slip his arm out from there.

Not thinking, I held him under his arms and grabbed him in a big bear hug, pushing up with all the strength in my legs. I wasn’t strong enough. I could get his upper body lifted incrementally, shifting the point of pressure, but he was dead weight. He said to call 911 and his mother, who lived an hour away. I tried one last time to lift him and felt a terrible wrenching in my back.

The paramedics came and, with the strength of two men, lifted him up and wrested his arm from the bar. I sat on the bed, watching and holding my lower back with two hands, willing myself to stay upright until he was taken away. He was in shock, and from what they guessed, suffering permanent nerve damage. Finally, the house empty, I put the groceries away, left a note for his mother and drove home, wincing with every turn.

Stumbling up the stairs and through the door of my apartment, I made my way to the rocking chair. Rik, surprised to find me home, held a delighted Sylvia out to me. I burst into tears and cried, every sob radiating through my torn lumbar muscles. It was excruciating, but I couldn’t stop. Nothing could stop me.

The threshold of my body was one I had not yet met. Trying to make sense of the calculations it took to make a life in close proximity to the needs of others, I had fractured into too many pieces to hold. Rocking myself that evening, ice pack against my back, I wondered how we would keep everything together despite the limits of our two young bodies, no marketable skills, and the mounting responsibilities of an adult life.

My own parents had had me young, not much older than Rik and I were. I remembered falling asleep to the rhythmic tapping of the electric typewriter as my mother wrote her term papers, working her way through college by day and pulling shifts at Montgomery Wards each night. At her graduation, I was as tall as her hip, on which my baby brother was balanced.

I kept working with clients a few hours a week, but I also signed up for classes at the local community college. Sylvia went to the child development center on the days I went to school and when I transferred to the university, she began kindergarten. This is how we built a life, with paystubs and textbooks piled on thrift store tables, each apartment slightly bigger than the last. No high ceilings, but we have a garden grown by Rik’s two strong hands and a bed bought solely for us. We worked hard. We were lucky.

•••

SARAH PAPE teaches English and works as the managing editor of Watershed Review at Chico State. Her poetry and prose has recently been published in Pilgrimage, The Rumpus, Mutha Magazine, California Northern, The Superstition Review, The Southeast Review, Hayden’s Ferry Review, and Cadence of Hooves: A Celebration of Horses. Her poetry chapbook, Road Z, was published by Yarroway Mountain Press. She is currently working on a book-length manuscript of essays.

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13 comments

  1. Beth Armstrong Leahy says:

    Wow, kudos to you and your struggles and overcoming them. I couldn’t have managed what you have with such grace and courage. All my best wishes for you and your family. Wonderfully written, goes without saying.

  2. Melanie says:

    Wonderful.

  3. Dina says:

    We don’t make our luck. But we make things with it– like the honesty and bravery shining here. Thank you.

  4. steph says:

    Loved this piece….as a former single mom of 2 great teenagers….I also experienced putting my client’s needs before my own….I enjoyed my home health client’s and their families and often thought about sharing these experiences through my writing….you have inspired me…we make our own luck….God bless….

  5. Sara Bir says:

    Oh, Sarah, I’m crying a bit. I hardly ever cry. So moving, so inspiring, and so beautifully written. Thank you.

  6. Deseret says:

    I worked at an assisted living center while I was in college – so many people with needs so great that they devoured my sleep and wet on my shoes. I commiserate. Your writing is lovely.

  7. Suzan Jantz says:

    Wonderful!

  8. Zsofi says:

    Ah, so perfectly written!

  9. Annette Skaugset says:

    This is amazing, you have done an excellent job. I am honored to know you. Keep writing, please.

  10. Sarah Pape says:

    Thank you all so much for the kind words!

  11. Antonia says:

    Beautifully written! I wish we had more stories like this, of our real struggles and real working lives and what they mean for us. But more importantly, this story of a caregiver and your client just seep courage and make me want to be a better person. Well done!

  12. Danielle Weast says:

    Such a compelling story. Well said. Thoughtful language.
    I only have one job (excessively part-time) and no babies to tend to. Your experience really puts mine in perspective. You’re a warrior. Thank you for sharing.

  13. Elizabeth Titus says:

    This is so vivid and real; I could literally see and feel all that went on. The details are excruciating, yet, they depict how very hard it is simply to stay alive, with such severe handicaps. I cannot imagine the strength and compassion it took for the writer to take on this kind of physically and emotionally challenging work. It makes me think how hard life can be, for so many people, and of course, how blessed I am to have my good health (for now). Thank you for such heartfelt, clear, compelling writing.
    Liz