I’d been in the hospital for a few days, enduring test after test in the afternoons. Doctors had taped wires to my wrists, wires that sent lightning up my arm. They’d put me inside of a tube-shaped machine that made loud and horrible sounds, like clanging metal and clacking bone. They’d poked and pricked needle after needle into my arms and fingers. They’d given me cup after cup of acrid-tasting liquid medicine to drink because I didn’t know how to swallow pills, because I’d gag when I tried. The doctors would start every day in the late morning and perform tests on me until about four in the afternoon, long after I’d become exhausted.
I lay on the bed, watching the television that hung in one of the ceiling-corners of my hospital room. My mother had left to get something for dinner, promising me that she’d return as soon as she was done eating. I clung to her promise and watched TV while falling in and out of sleep. A doctor walked into my room.
“Hello, Michael,” he said, holding a clipboard in one hand and a white towel glinting with shiny metal instruments in the other hand. “How are you feeling?”
“Okay,” I slowly mumbled, my consciousness continuing to totter slightly between asleep and awake. I looked at the shiny little metallic teeth bundled up in the towel. The doctor put his clipboard on the table next to my bed.
“I need to roll you over,” he said, resting the towel on the bed next to me, the little metal instruments tapping against each other like barely-audible wind chimes. He placed one hand on my waist and the other on my shoulder, pushing me over on my side.
“What are you gonna do?” I asked, feeling betrayed. Every day, the doctors would help motivate me through the painful and exhausting tests by telling me that there were only a few left, that there were only three tests, two tests, one test left, and after the last test, they’d tell me that I was finished for the day, that I wouldn’t have to do anymore until tomorrow.
“Micheal,” he said. “You are going to have to stay very still.”
“Okay,” I said, turning my head so that I could watch the television while the doctor did whatever he was about to do. He untied and pulled my gown open, and I felt something cold and wet against the skin on my lower back. I flinched.
“Michael,” the doctor sternly said. “I have to give you a spinal tap. If you move while I’m doing this—if you so much as cough—you may never walk again. Now, stay still and try to relax.”
I held my breath. My weak body went completely limp. Although I stared straight ahead, I couldn’t see anything. In the very depths of my mind stood a colossal mountain with a fat little boy sitting calmly on its peak and looking out over serene dreamscape, and inside of that fat little boy’s mind stood another colossal mountain with another fat little boy sitting on its peak and looking out over an even more serene dreamscape, and so on, and in the very center of it all existed coldness and darkness, and I trembled in this place while listening to the ugly sound and ignoring the horrifying feeling of a needle wiggling around the bones of my lower back.
“Good job,” the doctor said, retying the strings on the back of my gown. “You can turn back over now.” He gently pulled my waist and shoulder, rolling me onto my back. I heard his footsteps growing faint as he walked out of the room, and suddenly the ceiling came into focus. I turned my head, I wiggled my fingers, but I didn’t breathe until one of the machines next to my bed sounded a loud shrill, beeping alarm—a common sound in the Children’s Hospital intensive care ward—and a nurse ran into the room.
“Michael,” she said, pressing a button on the machine and turning off the alarm. “Don’t hold your breath like that; this isn’t a game.” I didn’t answer. With my breathing came sobbing.
“Honey,” she said. “What’s wrong? Why are you crying?” I tried to speak, to say that I wanted to go home, that I didn’t want to be in a wheelchair for the rest of my life, but the words turned into sand in my mouth and choked me to sleep.
After the first week, when the doctors knew the test results, they told my mother that I’d contracted Guillain-Barre syndrome, a virus that attacks the nervous system. For the past week, I’d twitch at the feeling of fire on my skin. I’d wince at the feeling of absent needles piercing my bones and muscles. The entire lower half of my body, from my the top of my thighs to the tips of my feet, felt like somebody or something had grabbed all ten of my toes, crushed them into each other, and twisted them like the key on a wind-up toy until my legs formed a tight spiral.
I could move my arms but had limited control. My muscles were weak, and I’d lost most of my equilibrium and hand-to-eye coordination. For dinner on the first full day I’d spent in the hospital, the nurse had served me a Sloppy Joe sandwich, one of my favorite meals. I was starving after that first afternoon of exhausting tests. I picked up the sandwich with both weak hands and lifted the sandwich to my open mouth, missing completely and smearing tomato sauce and loose meat all over my cheeks and nose. My mother cleaned my face and fed the rest of the meal to me by hand. After that, she handfed every meal to me, bite by bite, spoon to mouth.
I tried time and time again to tell my mother and the doctors and nurses that the cherry pie from Andy’s had made me sick, but the doctors reassured me that a person couldn’t contract Guillain-Barre through food or drinks nor could one person catch if from someone else. They explained that the rare disease affects one in every hundred thousand people and that there was nothing anyone could have done to foresee it or prevent me from catching it. They said I would most likely recover fully from the disease, but that my condition would worsen before it improved, and it could take as little as a few months or as many as five or ten years to get better.
After the tests, the nurses assigned me to a different room. They moved me into a room with a boy named Wayne. My mother, as she told me years later, looked into the room and saw this child, this young boy about four or five years older than me, laying on one of the two beds in the room, moaning and drooling all over himself. He was mentally retarded. She was terrified.
“You’re not putting my son in there with him,” my mother told the nurse who wheeled to the bed.
“I won’t let my little boy in there with that kid.”
“I don’t really think you have a choice in the matter,” the nurse snapped as orderlies lifted me onto the bed.
I don’t remember this conversation. I barely remember the first week of being in Detroit Children’s Hospital other than being tested and enduring the horrific pain of lightning through my bones and feeling like my limp weak body was tied into a tight knot. As my mother protested me being roomed with Wayne, I was floating through an abject confusion of surreal images. This story is one of many that she would tell me years later, accounts of her side of the story.
My mother walked out of the hospital room to look for a doctor to complain to, and she saw a little girl in the lobby by the nurse station. The little girl was surrounded by balloons and toys and nurses and relatives, and she sat in her wheelchair, and my mother walked up to her.
My mother asked the little girl, “Are you getting out today?”
“Yes, I am,” the little girl said. “I’m going to Heaven.” My mother couldn’t talk. She felt like she was going to throw up. She learned something that day about the resilience of a child’s spirit, about effortlessly accepting defeat with a positive attitude.
Everyday, different members of my family would come to see me during evening visiting hours. On some days, my mother would bring Mary to visit me while Gus stayed behind, probably drunk at a bar somewhere, crying about his sick grandson. On some days, my aunt Mary Anne would visit. On some days, my Uncle Tommy would visit with his friend, Brad, and they’d kneel by my bed, holding my hands and praying aloud to god for my recovery. Sometimes Matt, the downstairs neighbor at the Glenwood house, would visit, reading comic books to me and showing me the colorful pictures. Although I appreciated all of my visitors and every toy and stuffed animal they’d bring me, I became especially excited when my Aunt Carolyn brought her husband Rick with her. Rick was my hero, and I wanted to grow up and be just like him. I wanted to be bigger than life, with long hair, a thick beard, and arms covered with tattoos of flaming skulls. One night when he visited me, he gave me a metal sheriff’s badge, telling me that it was real, that an actual sheriff had worn it, but I didn’t care whether it was real or not. If Rick would have given me a piece of coal, then I would have cherished that piece of coal more than anything in the world.
My mother stayed with me as much as possible. After working the morning shift at her waitressing job at the mall, she’d drive straight to the hospital, greeting me with a strong smile and reeking of chili-dogs and mustard. She’d stay by my side for the rest of the day, holding my hand between tests and feeding my meals to me. The nurses let her stay with me after visiting hours, and she’d play with me. I always wanted to play “sheriff,” so she’d pin the badge to my gown and wheel me through the halls. Whenever we found an empty hallway, I’d say, “Let’s get the bad guys, Mommy,” and she would push me while she ran, gaining speed then slowing to a stop so that we wouldn’t crash into a wall. I would laugh, shooting imaginary criminals with my index fingers, and say, “Do it again, Mommy, do it again—faster, faster.”
I can’t imagine my mother’s side of this story, the agony that she must have felt seeing me in that condition. She was a single mother, and I was all that she had. Despite the hardship of watching her little boy’s health deteriorating, she remained strong in my presence and always spoke hopefully about my recovery, even when I was at my sickest and weakest, when the doctors told her that they’d have to give me a tracheotomy and pump oxygen into my lungs so that I wouldn’t stop breathing in the middle of the night. After the evenings of playing “sheriff” with me, she’d put me to bed and sit in a chair next to me for hours. Because of the awkward, painful, and uncomfortable sensations I’d feel in my legs and feet, I couldn’t sleep very well, but I’d lie completely still in bed, pretending to sleep while she sobbed herself to sleep. I’d usually fall asleep after a nurse came in and covered my mother with a blanket.
Fortunately, I never had to have the tracheotomy. Like the doctors had said, my condition worsened, but after about ten days in the hospital, I made a private choice. I told myself that I was tired of being in a wheelchair, unable to walk. I wanted to run and jump and walk like a normal child, and I vowed that I wouldn’t let Guillain-Barre syndrome win the battle. I remember the day, the moment, when I willed the wretched disease to leave me alone forever. When I made the choice, I’d already completed the diagnostic phase of my visit, so I didn’t have to take anymore tests, which gave me more time to spend in the playroom. I’d gotten better at maneuvering my wheelchair, so I snuck away from the playroom when the nurse on duty wasn’t looking, and I quickly wheeled myself to the visitor’s lobby, which stayed empty until the evening visiting hours. I sat alone in the empty room, pushing my hands against the armrests to raise my butt off of the wheelchair, then I relaxed and my butt dropped back down. I repeated the process until my arms hurt then I wheeled myself back to the playroom unnoticed.
I snuck away and practiced standing up everyday, and each time I progressed further. On the second day, I raised my butt out of the wheelchair, locked my elbows, and pushed against the ground with my weak legs, rocking my torso back and forth like a swing. On the third day, I lifted my butt out of the chair and, holding tightly to the armrests, took small steps forwards and backwards and to the side. On the fourth day, I pushed myself into a standing position then fell backwards into the chair. On the fifth day, I stood for two seconds without holding onto the chair. On the sixth day, I took one step forward before falling back into the chair. On the seventh day, I took two steps.
The eighth day was Valentine’s Day, February 14, 1979. My first-grade teacher from Robinson Elementary visited me, and she gave me a bag of chocolate hearts and dozens of letters that my classmates had written, telling me to get better soon so that I could come back to school and play. After she left, I wheeled myself to the nurse station in the center of the fourth floor, where all hallways converged. The nurses were throwing us a party, and they’d covered the walls with paper hearts and hung red streamers across the ceiling. My mother had promised me the day before that she’d probably be late for the party because of work but that she would be there, and she never let me down. I sat patiently, biding my time and waiting to show her a secret that belonged only to me.
After I’d waited for about forty five minutes, eating chocolate hearts and reading my classmates’ letters, I saw my mother walk into the nurse station area, holding a bouquet of flowers and a box of chocolates. I pushed myself up with my arms and stood shakily in front of the wheelchair that had substituted as my legs for over two weeks. A hush fell over the floor and drop-jawed nurses stepped out of the path of my mother, who had dropped the bouquet of flowers and box of chocolates on the floor at her feet. I swung my body and lifted one of my legs, catching my weight and balance when my foot retouched the ground. I took another step. I wasn’t holding on to the wheelchair anymore, and the world advanced in slow-motion frames. I took another step. I looked up. My mother held her hands out to me, motioning for me to walk the rest of the way, assuring me that everything was going to be alright. Tears poured in steady streams out of her eyes. I lunged out a few more jerky steps and collapsed into her arms.
“Happy Valentine’s Day, Mommy.”
She dropped to her knees, holding me, crying, and hugging me tightly. I could feel her wet tears on my hospital gown. I could feel my own tears streaming down my cheeks. I looked up at the tear-filled faces of the nurses who had surrounding us and placed their hands on our shoulders. One the nurses moved to the side and grabbed my arm, shaking it. I looked up at her, and she smiled at me and pointed to a doctor standing about ten feet away.
“Michael,” the nurse said, wiping her eyes with her shirt collar. “Can you show him what you just showed us?” My mother lifted her head off of my neck and kissed every part of my face, holding my cheeks in her hands. She looked at the nurse then at the doctor. She gave me another tight hug and stood up, holding onto my arms so that I wouldn’t fall.
“Go ahead, Michael,” she said with a happier smile on her face than I’ve ever seen. “Walk to him.” She held lightly onto my wrists, helping me keep my balance, then let go after I started walking. I lifted my feet and stepped one at a time, wobbling on my legs and waving my arms, but I didn’t fall. I walked into my doctor’s outstretched arms, and he picked me up, carried me across the room, and put me back into my wheelchair.
“Well, Ms. Piggins,” the doctor said to my mother. “You’ve got quite the little fighter on your hands, don’t you?”
“Yes, I do,” said my mother, sniffling and wiping her nose with her shirt sleeve.
“I’ve seen some amazing recoveries,” he said. “But I’ve never seen anything like that. Not with Guillain-Barre.”
I spent the rest of the afternoon laughing, playing with the other children, and eating chocolate. Although the nurses told my mother not to let me eat too much, she let me eat chocolate until my lips and tongue turned brown. That night, we played “sheriff,” our favorite game, and as my mother ran down the hallway pushing me in my wheelchair, I knew that soon I’d be running next to her.
First published in “Body and Soul: Narratives of Healing from Ars Medica.” University of Toronto Press (December 2011)