Pray For Willie – Fiction
By Judith Beth Cohen
I think of him as I swim laps. Though twenty years have passed, his swollen face rises before me, his eyes lost in cushions of flesh. The day Rudy’s mother led him into my classroom, her eyes broadcast panic. As she spoke to me, I felt his protruding belly pressing against my thigh. When he looked up, I bent down to his level and placed my cheek near his.
“Ma,” he bleated and backed toward his mother, as if my scent offended him. Though I’ve taught kids with all sorts of problems: some paralyzed bound to wheelchairs, gentle souls with Down’s syndrome, brave troopers with micro-cephalic heads and clever wizards with autism, Rudy, my strangest charge, haunts me still.
As I mingled with parents and children that opening day, I kept gazing back at my newest student. Rudy was beyond chubby; his spongy, thick arms ended in hands so swollen they seemed inflated. In his cheerful red shorts and matching cap, painstakingly sewn to accommodate his size, he reminded me of Tweedledee, straight from Alice in Wonderland. Simply to move a few inches required such effort, Rudy could have been dragging bags of sand behind him. That first week was rough going. He refused any touch and recoiled from contact with me or the other children. When recess time came, Rudy’s size and pace slowed down our whole group, making the kids impatient. While I pushed one wheelchair bound boy, Lisa, a child who never spoke, grabbed Rudy’s arm and pulled which set him off to wailing pathetically. His noises triggered a screeching binge as the class competed to see who could be the loudest.
“Enough,” I shouted. I called the children back to their seats, determined to deal with the problem reasonably. I tried to run my class as a miniature democracy. Each morning, we created rules for our little republic with children contributing in whatever way they could, by grunts, signs, nods or words.
“What can we do about Rudy?” I asked. Stuffed into an adult-sized chair, he shut his eyes tightly as if to make us disappear. As the benevolent director of our little Utopia, I tried to remain unobtrusive, just another citizen, allowing each child to express an opinion. Like emotional seismographs, they often pointed the way for me. Some of my fellow teachers found it strange that I treated my charges like competent, rational beings, but I think these disabled kids understood more than many adults could fathom. Alan, whose cerebral palsy made speech impossible, communicated by means of a board on which he spelled out his thoughts.
“Send to principal’s office,” he wrote.
“Go home,” Stacey, a five year old with a tiny head pointed at Rudy.
“Teacher, you stay with him so we can go bowling,” Ivan, a very verbal boy with undeveloped hands and feet, gave his opinion about our planned class outing. Then Lisa, the silent girl who’d set Rudy off, approached him. Very gently, she stroked his oversized arm as if it were a cuddly pet. Instead of pushing her away, Rudy’s cheeks puffed out, and he smiled. I could feel the children relax as the energy shifted. She had broken through.
“Let Rudy know how special he is,” I verbalized for Lisa. When I listed their suggestions and asked for a vote, Lisa’s idea held the day. The kids took turns touching or pointing at Rudy’s massive arm, and the flood of attention worked brilliantly. Rudy gladly accepted his “job,” to hold Lisa’s hand whenever we left the room. They made a comic pair: a tiny, speechless Chinese girl leading the enormous Rudy in his TweedleDee costume, her fingers encased in his puffy mitt. With her help, he soon became one of us.
Rudy’s mother Elsa had a very rudimentary understanding of her son’s condition. In our parent conference she sat by my desk, her thin blond hair falling over her eyes as she struggled to communicate. She and her husband had recently emigrated from Romania.
Though trained as an engineer, Andre could find no job other than driving a taxi, and they lived in a third floor walk-up. Elsa understood that Rudy needed special education, but his condition was a mystery to her. She used her hands to supplement her inadequate English as she described her son’s beginnings. Holding her throat, she mimed a gag; he had trouble swallowing. She made a pillow of her palms, showing his need for long periods of sleep. As a toddler he developed an insatiable hunger. Elsa rapidly opened and closed her mouth. Then she moved her fingers back and forth over her arm. Rudy’s skin must have itched terribly, for he scratched himself until he erupted into open sores, yet he seemed completely insensitive to pain.
The night after my meeting with Elsa, I thought about them as I prepared my meal, a daily ritual I cherished. From eight in the morning until three, I lived in the land of children, but at day’s end I loved my solitude. When I thought of the sorrows and struggles those families endured, I felt so grateful. Unlike them, I could walk away. As I focused on chopping vegetables, or mixing a sauce to liven up a chicken breast or fish filet, I would often enter a meditative state. As I cooked, I sipped red wine, welcoming the warm glow creeping through me, listening to string quartets or simply breathing in the silence.
Well into my forties, I’d become an expert at dealing with children’s developmental problems. Perhaps it was my way of saving the world. If I’d come of age in seventies or eighties, perhaps I’d have gone to medical school or earned a PhD in psychology, but I entered college in 1958. For a girl from an Iowa farm, earning a bachelor’s was quite a leap. All through my college years, I worked, serving in the cafeteria line or stacking books in the library. After graduation, I began my first job in Special Education. The children’s problems intrigued me–they were much more challenging than a regular classroom, the work so much more intimate than teaching words and numbers. So that’s where I stayed. If anyone asked if teaching interfered with my personal life, I’d say that it gave me a life.
I pushed to have Rudy evaluated so that I could better direct his education, but it took nearly a year before he was seen at Children’s Hospital. Since I knew that Elsa and Andre would have trouble communicating at the large institution, I joined them for their conference with the doctors.
“Your son has a rare genetic disorder called PWS or Prader-Willi Syndrome,” the business-like, medical specialist looked at me, expecting a translation.
“Pray for Willie?” Andre repeated. He looked at me, confusion clouding his clean, unlined face. Unable to comprehend, Elsa seemed frozen in her own world.
“It’s a genetic condition,” the doctor continued. From his severe tone, you might conclude that these young parents were at fault for creating this child. He reached for a pamphlet to hand them, apparently eager to end the session.
“What does this mean?” I asked. “Can education help? Are there any medications?”
He avoided my eyes as he answered me. “The weight gain can be controlled by a very restricted diet, but he’ll always feel hungry. He can’t control his continuous urge to eat but appetite suppressants don’t work, I’m afraid. I’ll set you up with a dietician who can go over this with you.”
He addressed me, as if they were hopelessly ignorant. I struggled to explain the diagnosis as we sat, waiting for more experts. The dietician and a social worker, both women, proved far more humane than the hurried doctor. Elsa and Andre left the hospital knowing that they must control what Rudy consumed, or he would literally eat himself to death.
I read whatever I could find about a disease I’d never before encountered. In these unfortunate cases, the part of the brain that normally sends hunger and satiety messages is missing a chromosome, so they can’t control their gluttony. The deficit also causes a lack of muscle tone, undeveloped sex glands and a host of behavior and learning problems. In the distant past, cases of extreme obesity like these were attributed to the indulgent eating habits of the very wealthy. Experts speculate that many circus “freaks,” as well as the prototype for Santa Claus may have been victims of Prader-Willi Syndrome.Not until 1940, did three Zurich doctors, Andrea Prader, Heinrich Willi and Alexis Labhart identify the genetic disorder in their own obese patients. By the time Rudy was diagnosed in 1980, the first statistics collected had only been made public, so there wasn’t much to go on.
I found a copy of “La Monstrua,” a seventeenth century painting by the Spanish artist Juan Carreno that’s in Madrid’s Prado, and studied it carefully. Eugenia Martinez Vallejo, the obese child in the portrait, is dressed in an elegant gown that drapes her enormous belly like a tapestry covering a hillside. Her swollen face looks angry, and one raised hand reaches helplessly toward the viewer. I left the book on my coffee table, and like a guilty voyeur I found myself going back again and again to look at that unfairly labeled “monster-child.” With a mixture of repulsion and fascination, I moved deeper into Rudy’s strange world.
Though he’d had some language at three, Rudy’s interest in speech decreased as he grew fatter. By the time he entered my class, his only word was “Ma,” yet his tone and pitch carried a hundred different nuances. Combined with eye contact, he managed to have a conversation of sorts. Clearly, he understood most of what was said. When praised, he smiled, and his bulbous cheeks expanded. When scolded, he would wrinkle his forehead, turning into an old man.
Each child’s picture was mounted on a board, and when I spoke a name, Rudy could correctly point at his classmate’s likeness. He also loved books. With his favorite, The Little Engine That Could, he would sit on the floor and slowly turn the pages, giggling at the pictures. He loved to hear the refrain: “I think I can, I think I can, I think I can,” over and over until the whole class would chant in unison, causing him great delight. When I asked him to point out a man, or a cow, he always did it correctly.
To increase his range of communication, I adapted a form of American Sign Language which worked very well, especially when it came to food. To let me know he wanted an apple, he would press his right index finger into his right cheek and make a twisting motion. Soon the other children found signing so much fun, their fingers flew as they “talked” to one another, a process which enhanced their social skills as well as lowering the noise level.
Willing to try whatever worked, I made food the center of my relationship with Rudy by devising a “tea-party” just for the two of us. He would watch every movement I made and never missed my wink, the signal that it was our time. While the children worked on their coloring or numbers, we went to the little playhouse at the back of the room for our private snack. Rudy couldn’t fit into the child-sized chairs, so he plopped on the floor and I sat cross-legged beside him.
Because of his diet, our “tea,” was no more than food coloring dissolved in artificially sweetened water, yet his desperate need for that small gratification allowed me to entice him into activities at the various learning centers around the classroom. One sip and it was time for blocks; another sip and he worked to fit shapes into forms. Giggling as his hands moved, I noticed little bubbles forming on his lips in anticipation of his reward. If only the magic “tea” could have shrunken him, just as it had Alice.
As our private snacks became more important, I noticed a curious change in my own eating patterns. My nightly meals became less inviting; what held such meaning for Rudy became indifferent to me. Everything began to seem tasteless and I had to force myself to finish a bowl of soup so I wouldn’t be malnourished. Rudy’s battle had turned food into an enemy for me; as if I had to defeat it, subdue its power, even if he couldn’t.
By March, Rudy had been with me for almost seven months, and despite his increasing size, I thought we were doing well. My confidence was shattered when Elsa came for a conference and I learned that Rudy was living a double life. Though cooperative at school, at home he refused to sign, threw tantrums, demanded food, and scratched his mother when she asked anything of him. With her eyes full, Elsa showed me the scabs that marked her arms.
“I can’t fight him,” she said, tears running down her face. To make matters worse, as Rudy became harder to manage, her husband was spending more time away, leaving her alone to cope. Their family doctor’s only solution was to prescribe sedatives for Rudy. Though I tried, I couldn’t convince her to bring him back to Children’s Hospital for another consultation. “We have no money for that,” she complained. When I offered to take him myself, the school discouraged me. It was a legal matter, the principal explained; I could suggest but I couldn’t interfere.
Once he was put on drugs, the horrible fights stopped, but so did everything else. In class all Rudy did was emit little whimpering sounds, like a sick puppy. The other children were terribly upset; only food could stop Rudy’s distress and then only until his “tea” was gone, and he’d begin whining again. I encouraged Elsa to stop the sedatives.
“Ignore him when he’s aggressive,” I told her. “Reinforce him when he cooperates.” I began to meet with her weekly as a sort of coaching session. Our talks gave me a much fuller picture of her life with Rudy. Without her husband around, she’d turned to religion to help her cope. Whenever she could, Elsa took Rudy to church. Throughout the service, he would gaze at the Crucifix, as if he could see something nobody else could.
“I think he want to talk to Jesus,” Elsa said. Picking up on his cue, she put religious pictures on his bedroom wall. “If I go in, I find him starring at Jesus and Mary,” she told me. “Like he’s praying.”
I wondered what went through Rudy’s mind; was he searching for his absent father? Or did the picture touch him in a way we could never comprehend? I wished he could tell us. I wasn’t a church goer myself, but if Rudy’s spirit could reach past his imprisoning flesh, so much the better.
Despite his religious fascination, Elsa’s struggle to limit his food intake was becoming a monumental battle. His strict 600 calorie diet meant one leaf of lettuce, a cup of broth, a paper thin piece of meat, one whole wheat cracker, and three carrot sticks for lunch. In school an adult had to sit with him or he would snatch another child’s sandwich and devour it in one bite. At home Elsa locked the refrigerator and the cabinets, which drove Rudy to lick the table, the floor and the walls. Desperate, he would swallow dead beetles he found on the ground. Once, while the class was playing outdoors, I found him sitting with feathers stuck to his lips and the remains of a dead sparrow lying next to him.
I invited Elsa to volunteer daily as a class aide; if we could bridge Rudy’s two worlds, perhaps it would get easier at home, and poor Elsa wouldn’t be so isolated. We devoted an entire class meeting to Rudy’s food problem, but despite our plan to help him with his diet, silent little Lisa kept giving him her own dessert. Bonnie, a chubby girl with Down Syndrome, was the most agreeable child in the class, yet she became fierce if anyone touched her food, so I tried partnering her with Rudy. As soon as his hands reached toward her lunch, Bonnie doubled over protecting her meal so completely that Rudy finally stopped trying to steal from her; a small victory.
Physically trying to deal with Rudy gave us the greatest difficulty. I’m five four and back then I only weighed 120 pounds. By spring, I’d lost weight as a result of my unplanned diet, and Elsa was even lighter. Activities like throwing a ball, rolling on the floor, or carrying chairs, a normal part of our class routine were nightmares for Rudy. As a protest he leaned back against me hard enough to knock me off balance and I often ended up on the floor, or covered with black and blue marks. His worst trick was to retreat to the washroom and sit on the toilet. Picture us, Elsa and I trying to move him. He won every time–Rudy, the king on his throne, lording it over his puny subjects.
Eventually, I learned to substitute other activities so we could avoid these confrontations. Drumming was a physical task he loved, and he could keep remarkably good time while he banged away, panting and sweating. I gave the other children instruments so they could ring their bells, and blow their whistles to accompany him. Because of Rudy, we developed our own Basin Street Band and were invited to perform for other classes.
The day we used the new school swimming pool for the first time, Rudy’s world changed. From the moment he entered the water, his fight against gravity ended. I watched him paddle down to the deserted deep end while the others splashed in three feet of water. Alone, he bobbed around like a baby whale, fully at home, enjoying the sensation of near weightlessness. Trying different strokes, he floated on his back with a lovely smile on his face. Since he was so happy there, the pool became his special habitat and we let him spend as much time there as possible. But as Rudy’s size increased, simply getting into the pool became more of a challenge. He would go down the first two rungs of the ladder, then fall backwards with a loud splash, but by May he was too large to use the ladder. Two of us had to maneuver him into position on his side at the pool’s edge. He would spread his arms and legs in complete relaxation, waiting to be dunked, then to his enormous pleasure, we’d slowly roll him into the water. Getting him out was another story. Often I resorted to luring him with food. If only he could have lived the rest of his life in his very own tank.
To help my kids be part of society (this was before the rights of the disabled were protected by law), I arranged for my class to spend a week at a summer resort. We had to raise money to fund the trip, so we decided on a Walk-a-thon. Each child solicited pledges from the surrounding businesses, most of whom were eager to help. I escorted them through the neighborhood as they collected promises, so much for each lap around the school. At the hardware store, the bewildered clerk in his red smock looked at Rudy with unabashed amazement—who has ever seen a five year old who weighed one hundred and eighty pounds?
“I’ll tell you what, son— if you can get around that school once, I’ll give you the full pledge,” he said.
“I think it’s better for Rudy to do four laps, just like the rest of the kids,” I told him.
“How bout it kid? Think you can do it?” He bent down with his pen ready to sign the pledge.
Rudy shook his head and smiled; his cheeks puffed out as if they held a winter’s worth of nuts. When the Walk-a-thon began, I took his arm and egged him on, one step after another until he made it around the building. He moved as if his body was struck in low gear. Simply raising one foot seemed to drain him completely, and he had to stop and rest with every third step.
“Just think of the fun we’ll have in the lake,” I coached, trying to provide the fuel he couldn’t produce. By the second lap he was struggling so, I began to feel like an animal trainer forcing a baby elephant to perform tricks. Ashamed of myself for endangering his health in the name of some principle, I decided to stop him, but with sheer will he pulled away from me and lumbered along to his meet his goal. Despite the insurmountable obstacles he faced, he plowed ahead, just like the little steam engine.
At the close of the school the entire class went off to the lake, along with as many parents as we could enlist. I knew this would be especially delicious for Rudy; I imagined him freely swimming for hours, released into his watery domain. But sadly, the resort owners were so concerned about safety and liability; they made us keep the children in shallow water. While the others waded in ankle-deep, Rudy sat on stony shore, a beached sea creature, his bathing trunks filling with sand and mud. Elsa hung at his side, trying to keep him from crawling off into deeper water. Suddenly Rudy attacked her, scratching, pushing and screeching until it four adults managed pull him off. Though I knew it was wrong to reward his violent outburst, I defied the rules, took his bulbous arm and led him further out where we could plunge into the lake together. I turned on my back and floated and he copied me.
For more than an hour, we paddled around, gazing at shapely clouds drifting through the sky. “Look at the elephant,” I pointed at long nosed shape, making him giggle. When I finally tried to lead him ashore, he nearly pulled me pulled me under in protest. “Snack” I shouted. “We must go back for our tea.” Reluctantly, he came along, grasping my arm.
By the time he was eight, Rudy weighed three hundred pounds. Elsa gave up on her matching outfits and bought clothes at a special store for large men which she then reassembled to accommodate his bulk. We taught him the small steps involved in dressing, but the task became too much. He couldn’t raise his heavy hands high enough to put on his own shirt and needed constant assistance. After three years as his teacher, I no longer used swimming to bribe him. Depriving him of the water he loved would be too cruel so I let him stay in the pool as long as he wished. I knew that Rudy’s time was running out, for once a child becomes that obese, his heart can’t take the strain.
That December I was called to the principal’s office and presented with an official document from the fire marshal who had determined that having Rudy in the building constituted a fire hazard, and for the sake of safety he would be excluded from school. I couldn’t believe it. That day, instead of putting him on the school bus, I went home with him to tell Elsa the bad news. Until I could get the ban lifted, he would have to remain there. When we arrived, Rudy looked up at the three flights he would have to climb, gathering his strength. He mounted a step, then waited, two more steps, and he was gasping for breath. When he looked at me for help, I wished I could give him wings. To face this enormous task just to get back and forth– maybe school was too much for him. A half hour later he reached his door and immediately collapsed into an oversized armchair. I felt exhausted watching him.
I went through channels and petitioned the authorities, but all they would only agree to a home tutoring program. For the next few months, I visited three times a week and tried to interest him in school activities, but he was in such pain, even sleep was nearly impossible. His eyes had almost disappeared, as if they’d been swallowed by fat, and his skin was so stretched out, he looked as if he’d burst. I talked away, telling him about the other children, hoping that he’d show interest in Lisa or Bonnie, but Rudy simply worked at breathing. At school, the children asked about him and made him cards. Without Rudy, the classroom seemed to expand to twice its size, but it felt empty.
A month after his exile, Elsa phoned to say that Rudy was in the hospital. While she was trying to bathe him, he’d fallen on top of her and broken her arm. I pictured the tiny woman pinned under her helpless giant. “They kept him there,” she said, “No bed was big enough so they wired two together.”
By the time I got to the hospital, Rudy’s heart had given out. They let me in to say goodbye; I wish I could say he seemed peaceful, but no, lying inert with his swollen face and limbs exposed by the skimpy hospital sheet, he’d become a grotesque monstrosity. Not yet nine, he died weighing 350 pounds. After Rudy’s death, Andre moved back in with Elsa, as if he’d been waiting for his son to leave a space for him. My life changed as well; slowly, my appetite returned. My measly salads grew larger and within a year I’d grown plump. Never again did I teach a child with Prader-Willi. These days, much more is known about the condition. Some children survive into adulthood if their weight is controlled. I hope they suffer less than our Rudy did. In my retirement, I now swim laps for exercise. Back and forth, I alternate strokes, first the crawl, then the backstroke, then I float, kicking my legs.
Sometimes I picture Rudy, joyfully splashing through the water. When I’m in the pool, my plans for tomorrow dissolve; my body moves freely, melting into liquid until I lose all sense that my own time here is passing.
Judith Beth Cohen‘s novel Seasons was published by The Permanent Press of Sag Harbor, New York in l984. Excerpts appeared first in Ted Solotaroff’s quarterly, The New American Review. The book was originally published in German translation by Rowohlt of Hamburg as part of their international New Woman Series (l979). Cohen’s stories have appeared in numerous magazines including The North American Review, New Letters, High Plains Literary Review, Sojourner and others. Her reviews and articles have appeared in The Christian Science Monitor, The Dallas-Times Herald, The Boston Herald, The Boston Review, and The Women’s Review of Books. Cohen, who won a PEN SYNDICATED FICTION AWARD, has had fellowships to many writer’s colonies, including: Hawthornden Castle International Writer’s Retreat in Scotland, The Fine Arts Work Center in Provincetown, Yaddo, MacDowell, The Virginia Center, The Tyrone Guthrie Center in Monaghan, Ireland and The Djerassi Foundation in Woodside, California. She has received grants from the Vermont Arts Council, the Mary Roberts Rinehart Foundation, and was a Fulbright scholar l987. She is professor Emerita at Lesley University, Cambridge, Ma.
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Sami Holden earned an MFA in Screenwriting from UC-Riverside at Palm Desert and is the founder of The Tiny Tim Literary Review. Previously she was a dating advice columnist for The Good Men Project’s column – Dating in the Digital Age with Sami Holden as well as the press and social media editor for The Coachella Review. She wrote a blog for a number of years called Chronicles of Cheerful Clotter for HemAware Magazine, where she detailed her life with chronic health conditions. Sami is also an associate producer and press manager for the documentary Invisible: The Film, which focuses on individuals living with chronic pain and invisible illness. She has served on the Board of Directors for the National Hemophilia Foundation, spent time as a Senatorial intern, and was Miss Wisconsin for the ANTSO program. In addition, she has had articles published in Chronicality, Elephant Journal, The Glow (Australia), I.G. Living Magazine, The Manifest-Station, The Mighty, National Pain Report, Ravishly, and YourTango. Her interests include ukuleles and sloths. Find her @SamiDan19.