Scoliosis.
I can’t remember the first time I heard of this disease. I grew up hearing the word from my parents, whispering adult conversations about their daughter’s medical condition. I remember hearing my aunt had such significant spinal curvature, that she had a rod placed in her spine to straighten it, resulting in her being unable to have children. My parents told me I was lucky medical treatments had advanced since then.
I remember going to my pediatrician’s office and doing the Adam’s Forward Bend Test, where I bent forward at my hip and reached for my toes. This simple movement would reveal whether I had scoliosis, based on any visible imbalances of my rib cage. While I hung there, ignorant of the intensity of my condition, my pediatrician and mom exchanged worried glances. As I bent over, the significant imbalance of my rib cage came into full view. I definitely had scoliosis.
My parents, to my dismay, were eagerly proactive following my diagnosis. While some orthopedic surgeons informed us that the only effective treatment was surgery as a teen, my parents ignored them. We piled into the family car and drove to Houston, Texas – home of the renowned Texas Medical Center. As often as possible, my parents would remind me that I was receiving the best medical treatment. I rolled my eyes as I sat cramped for the three-hour car ride from my hometown. Scoliosis wasn’t an impediment to me, but these doctor’s visits were, I argued.
These car rides became routine throughout elementary school. We drove to Houston every six months to see “Dr. Johnson,” a pediatric orthopedic surgeon. He would inform me that my curve had slightly increased, but bracing was not yet needed. However, my visit to Houston in late 2014 was unlike my routine medical appointments. After the technician took X-rays of my spine, I waited in the cramped patient waiting room with my parents and sister. Dr. Johnson entered, pumped hand sanitizer into his palms, and ran them through as he sternly greeted us. While my parents insisted that this physician was the best in Houston for children’s orthopedics, I disliked him. His stoic demeanor and barked orders to “bend over” and “lie down” frightened me. I felt vulnerable standing in my undergarments, with the thin hospital gown barely covering me from behind.
As usual, he sat at the computer, pulled up my spinal X-ray, and began to calculate the curvatures of my spine. These calculations were done manually. To my untrained eye, they appeared largely determined by whim. A millimeter movement of the mouse would change the trajectory of my treatment. My curvature was around 30 degrees. I knew little about the intricacies of scoliosis, but I did know that 30 degrees was not insignificant. Yet, as I stared at the X-ray, my spine did not appear that misaligned. Surely, he was mistaken?
In his usual cold demeanor, Dr. Johnson continued, “Now that your curve has passed the 28-degree threshold, you should start to wear a back brace. Other than showering and sports, the brace should be worn all day and night.” He handed us the address to the orthotic clinic where the brace would be molded to my spine. Dr. Johnson’s quick, monotonous statement felt like a blow to the head. How could my life change so much in 10 seconds?
No, no, this is not happening. I silently screamed. As the tears fell on my young twelve-year-old face, my silent crying turned audible. My face was red and tear-stricken.
The tears were not new. After most of these appointments, I cried to my parents, attempting to convince them that my scoliosis was insignificant. I didn’t understand why my parents put so much effort into finding a way for me to feel pain. My friend’s parents never took them to the doctor for scoliosis. Why couldn’t my parents be normal? Their usual response evoked more anger. They told me that they loved me and wanted the best for me. They told me that I should be thankful I didn’t have worse medical conditions. Every time we visited Texas Children’s Hospital, it was evident other children had worse conditions. I knew I was selfish and foolish as I cried after Dr. Johnson prescribed me a back brace. I knew that next door to my room were other children, younger than me, who likely had worse orthopedic conditions and needed surgery. Still, I was angered and hurt.
The next stop was the orthotic clinic. I was given a thin, white, dress-like garment to wear. In order for the orthotists to sculpt the paper-mache-like molding, the garment had to be as tight as possible to my body. I stood there in my undergarments and the thin dress in a room full of men I didn’t know, who were about to paper-mache my back.
A month later, the custom thousand-dollar brace arrived at my front doorstep like an uninvited guest. The brace was designed to contort my spine in the opposite direction of the curves, forcing my spine to realign in the right direction as I continued growing. The goal of the brace was not to fix my crooked spine. It was to prevent further progression of the curve to prevent surgery.
Wearing my brace to school presented unique physical challenges. I wore several layers to school each day: a thick cotton undershirt tank top, the half-inch thick brace, a t-shirt two sizes too large, and an oversized sweatshirt to mask the plastic portion of the brace that poked from my back. This uniform was manageable in the winter. However, during the hot Texas months, my back was wet with sweat. After school, I would quickly climb into my mom’s car and rip off my brace to get some relief and dry off from the sweat. These four layers of clothing were the only way I knew how to conceal my secret. As a distressed twelve-year-old, I hated that scoliosis made me different.
While I did my best to hide my condition, the moments when others discovered my brace were imprinted on my mind. A friend once tapped me on the back to get my attention, only to discover that my back was not soft skin but a hard plastic shell. She jumped back, startled.
“Why is your back so hard?” she squealed. I dragged her away from the other students. I whispered ashamedly that I wore a brace and tried my best to explain my condition. While scoliosis is a common disease, scoliosis treatment is not widely known or discussed, especially among middle-school-aged kids. I did not know a single other person who had a scoliosis brace, and I felt utterly alone.
For the next several years, I would trek to Houston to visit Dr. Johnson to check on the progression of my spinal curvature. I mentally prepared for the detached, unempathetic conversation with him. On one visit, however, the room door opened, and a smiling, friendly woman walked in. She announced that she was a new physician resident who would be working with me today. I immediately perked up and felt more relaxed. She asked about my treatment, and how I felt about it. I told her about my dislike of the brace, and she agreed, recognizing my emotions. For the first time in all of my twice-yearly scoliosis check-ups, I felt validated. On subsequent visits, however, I discovered she was moved to another Texas Children’s Hospital location. Nonetheless, that brief 10-minute interaction was the most positive experience I had in over ten years of seeing physicians and orthotists for scoliosis.
I have not had to wear a brace for almost four years now. While I remember the daily annoyances, most of the hatred for my brace has diminished. I look fondly at those memories because of the mental strength I gained. My spine still has a significant sideways curvature that causes me daily back pain and discomfort. However, without the brace, I likely would have needed spinal fusion surgery.
The process of writing about my scoliosis is cathartic and healing. I spent my middle school and high school years hiding my secret and avoiding the word scoliosis as much as possible. I kept my emotions contained within me. Writing out these thoughts enables me to release the negative feelings I held within me for so long. Today, I can reflect on the strength I’ve gained since that tear-stricken, timid twelve-year-old girl first put on her back brace, and I’m very proud of her.
Note:
The name “Dr. Johnson” has been changed to protect anonymity.