| This is the 604th story of Our Life Logs® |
I am 17. Poised like a cliff diver at the edge of the precipice. Steeling myself to make the leap into my new life. A senior in high school with no idea of what it means to stand to my full height. To rise from my chair and unfold my body to the unfamiliar stature of my almost-adult self. To meet the gaze of my loved ones. Eye-to-eye. Face-to-face.
My parents leave gentle kisses on my forehead before I am wheeled into the operating room. The gurney widens the gap between us, and their tight, artificially cheerful smiles recede from my sight. The doors swing open with a loud whoosh. The sound seems almost inappropriate in the solemn quiet that has suffused these soft morning hours. I’m surprised to find that the lights in the surgical suite aren’t bright and clear like I had expected. I feel embryonic, suddenly ensconced in a second womb from which I will emerge a new creation. The anesthesiologist injects the sedative into the IV tubes blooming like strange petals from the back of my hand. I close my eyes and draw a deep breath. I take the plunge. I make my leap.
To explain how I got to that day, I must go back to the beginning. I was born May 7, 1975, in northeast Tennessee, nestled in the foothills of the Smoky Mountains. We lived on an acre of land, rich with leafy trees and a tiny creek murmuring through the front yard. My parents and I lived in the brand-new singlewide recently installed on one end of the verdant acre, while my maternal grandparents lived in what we affectionately dubbed “The Little House,” the small cottage built on the other edge of the property decades before my grandparents bought the land.
My grandparents, parents, and I, along with a foster sister, Debbie, who was as close to us as blood, all lived together on that little plot of land beneath the trees. Both my parents came from big families, so I never had a shortage of playmates. We frequently joked that there were enough cousins to fill a small football stadium.
My grandfather was a pastor and worked with my father in the nearby furniture factory, making high-end wooden tables. Every Wednesday night and twice on Sundays, Mom, Dad, Mamaw, Granddaddy, and I piled into the station wagon and headed to the old country church where Grandaddy preached.
Though we didn’t have much money, in so many ways, my childhood was idyllic. I was enveloped in faith and love.
For every silver lining, though, there’s a cloud. When I was 20 months old, I was diagnosed with Juvenile Rheumatoid Arthritis. Today, it’s also known as Juvenile Idiopathic Arthritis (JIA), “idiopathic” meaning, “arising spontaneously and without known origin.” That is the mystery of JIA in a nutshell. And while JIA is one of the most common chronic diseases of childhood, much about it remains unknown. In many children, JIA seems to steal away as quickly and mysteriously as it arrived. In still others, it leads to permanent disability.
And when it goes systemic, children with JIA are around 50 times more likely to die than those without it, usually due to infections or to complications affecting the cardiovascular or respiratory system. Aside from the orthopedic and systemic impacts, children with JIA face a significant risk of blindness due to inflammation of the inner eye.
The day I was diagnosed, in fact, the first order of business was to have my eyes checked by an ophthalmologist. And this, it turns out, would be one of my first memories: sitting in the darkened exam room in the stiff, vinyl examining chair. My legs, straight out before me, didn’t reach the edge of the seat. My Sunday-best dress flounced around my knees. White tights and black patent leather shoes sprout from the lace hem of the floral skirt.
Dr. Johnson, who would take care of my eyes for the next 20 years of my life, directed me to watch the mechanical puppy dog on the far wall in front of me. He flipped a switch and I giggled and stared. While my attention was diverted, Dr. Johnson deftly leaned in with his scope and confirmed my eyes were sound.
No parent would wish for their child to be diagnosed with an incurable and unpredictable disease before the age of two. Still, there was a measure of relief in the doctor’s verdict. Since JIA, especially in the early stages, mimics leukemia, cancer was a fearful possibility. But we were by no means out of the woods. There weren’t many treatment options for children with JIA back in 1977. There was physical therapy to keep the muscles strong and preserve range of motion. Heat therapy and massage for pain. Braces and splints of every variety to prevent deformity. Heavy NSAIDs to try to keep the inflammation at bay. By the time I was 5, I was taking a bottle of orange-flavored, chewable baby aspirin daily.
When I was 7, the first rheumatologist set up practice in our small town, and with her guidance, we became more aggressive in our fight against this unseen enemy. Gold salt injections. Prednisone. The occasional cortisone injection into the joint, followed by a 10-day marathon of daily physical therapy to break up the contractures that had formed. Low-dose oral chemotherapy that left ulcers on my mouth and tongue so severe that I cried when I brushed my teeth and spat blood and flesh into the sink when I rinsed.
Every few years, my hometown doctors would call on the Big Guns, and off my parents and I would go to Duke, to Vanderbilt, to Children’s Hospital in Cincinnati. The verdict was always the same: My healthcare team at home was doing all that could be expected. My case was among the most severe the experts had ever seen. I would not grow out of it. Remission was not to be expected. In the meantime, the only option was to minimize the damage as best as we could until my body stopped growing and joint replacement surgeries could begin.
But before that day arrived, the enemy continued its slow, hungry march through the soft tissues of my body. By the time I was 12, I could no longer walk. By the time I was 16, I could no longer bend my knees or turn my head. I could not dress myself, bathe myself, or even brush my own hair, so rigid had my skeletal system become. The cartilage had been eaten away from between my bones, and then the bones themselves began to be consumed.
Pain was a constant companion. Sometimes, it was a low roar at the back of my consciousness. At other times, there were all-consuming muscle spasms so intense that they lifted my leg off the mattress or drew my wrist to my shoulder. On those occasions, my parents were compelled to hold me down and knead the knots out of my quadriceps. When the arms went into spasms, my father would carry me to the couch, where my mother waited. Once dad had placed me beside her, she grasped my forearm and began to forcefully pull my arm straight. desperately trying to get the spasm in my bicep to release. As she fought the spasm, I lay my head on her should and screamed. And then there were the nights that the pain was so relentless and so intense that, in my panic, I would ask for the lights to be turned on, only to realize the lights were on and my eyes were open.
Despite these hard moments, though, life went on. We managed. We dealt. I joined Girl Scouts. I belonged to a dance troupe for children with disabilities. I laughed and played and got into trouble with my many cousins and my wonderful school friends. You sometimes hear terrible stories of children with severe disabilities being mocked and excluded. But this was never my case. Even at their tender age, my friends seemed to have this incredible intuition about how to be near me without hurting me or making me feel different or “other.” They conspired with teachers to throw surprise parties when I was preparing to go away to the hospital or when I was recovering from a particularly difficult exacerbation of my illness. They surprised me with roses at home and cards while I was away. I was loved.
I reveled in my dear ones, my fur babies, and in my books and my writing, which had always been my personal joy. I kept busy, always living for the prospect of the surgeries, for life after the joint replacements. Then I would be free of pain. Then I would walk. Then I would be independent. After I made my leap, then my life would really begin.
Little did I know when I was wheeled into the operating room at the age of 17 that my first joint replacement would also be my last. The damage had been too great. My femur shattered during the hip replacement and broke again in physical therapy six weeks later. The femur repair required another surgery, and the bone took more than a year to heal. In the process, my already compromised musculoskeletal system continued to deteriorate. I became largely bedbound. I remain so today.
The aftermath of the leap presented me with a choice: give up or get on. For a time, admittedly, it was a tossup. I wallowed for a period. I mourned not what had been lost, but the dream of what was lost.
Eventually, though, the fog began to clear. Bit by bit, I could discern with far greater accuracy than before the surgery the truth of who I was, of what I had, and of what I could be. For almost my entire life, I had been living for the surgeries. I had valued my life, myself, and my world not by what was, but what might be.
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When you have been living for a dream and the dream is lost, so are you—at least for a while. But, as ever, my dear ones brought me back. Their love reminded me that my life still had value and purpose. There was still meaning. There were still good times to be had and work to be done. I began to take correspondence courses from the University of Tennessee and I soon found myself feeling happy and useful. It was then that I began to form my commitment to continue on to graduate school and pursue my dream of becoming a teacher and scholar, even if the road might be longer than it might be for others and even if the work might need to be done in a nonconventional way. The alternative was not acceptable. The choice between giving up and getting on, it turns out, wasn’t a choice at all.
My soul healed, even if my body did not. At college, I found incredible support from my professors, who helped to accommodate my physical needs. I kept my class days short, attending as often as I could. And when I could not attend, my classmates recorded lectures for me.
After college, my mother and I moved to Charlottesville, Virginia, and then to Knoxville, Tennessee, where I received my MA and Ph.D. in English, respectively. I’ve begun to build a career that fills my days with purpose and my life with meaning. I am an online professor of writing and literature, a writer, and an independent scholar. I work from my bed, where I spend most of my days.
My sphere of existence is far larger than the parameters of my bedroom. When my sickness tried to shrink my life down to the edges of my quiescent body, God gave to me a multitude of loved ones who, in turn, gave me the whole world. My best friend since fourth grade continues to be as close as a sister. She is now a special education teacher who specializes in working with children who are blind or visually impaired, and in supporting other educators in this crucial work. She has raised three children whom I have had the privilege of loving since before they drew their first breaths. My cousins have traveled the world, from the shores of California to the great cities of Europe to the jungles of South America and the distant lands of East Asia. They have carried me with them, and, through them, I have pieced together a beautiful mosaic of life and love, of wonder and thanksgiving. Because that little acre of land, that little country church, that army of cousins, bastion of friends, and fortress of faith and family have given me all that I will ever need, far more than JIA could ever steal.
This is the story of Terri Beth Miller
Terri is a writer and educator born and raised in northeast Tennessee. There she lives in the foothills of the Smoky Mountain, surrounded by her books, her family, and her fur babies, many of whom are “special needs” rescues who daily teach her the meaning of true joy and unconditional love. She’s been fortunate enough to travel with her cousins who have carried her with them from the coasts of California to the wilds of South America to the great cities of Europe. Linda, her best friend since the fourth grade, has remained her best friend to this day. Her friend is now a special education teacher, teaching children with visual impairments. Terri has also found joy through getting to know her friend’s three children. Terri loves to share her experiences through her writing.
This story first touched our hearts on October 11, 2021
Writer: Terri Beth Miller | Editor: Kristen Petronio; Colleen Walker