“S” is my favorite letter. You are probably thinking that is because my name starts with S. Although that is part of it, it is not the entire reason. I love the letter S because my spine is shaped like an “S”. I have scoliosis.
Scoliosis is a condition that results in the curvature of the spine. Depending on the degree of your curve, there are various treatment options such as bracing and surgery. Typically, scoliosis also causes uneven hips and shoulders. I was diagnosed at 11 years old at my yearly physical where I was then referred to a specialist to get x-rays. Little did I know those x-rays would change my life. It was the first time I had ever seen a spine that was not straight, and it shocked me because it was not just anyone’s spine, it was mine. While my family and I waited for the doctor, I was grappling with my new reality. You would think a doctor would have empathy and compassion for their patients, especially when bringing a diagnosis to a child. Well, I was incredibly wrong. The doctor that stood before me was a cold, middle-aged man who told me (while I was sobbing might I add) that this was “no big deal.” He spat that many kids go through this and I should “stop crying.” The disdain carried on as he dropped another bomb: I would have to wear a back brace. Not just any back brace, the Boston Brace for 23.5 hours a day. He pulled out a white, hard-plastic brace the size of my torso and acted like it was nothing. I was appalled by the sight and all the comfort he gave was a “you’ll be fine” then compared the brace to wearing a turtle shell. All the thoughts that ran through my head were how uncomfortable it would be, how I would hide it underneath my clothes, and mostly, how would I wear this to school and what would people think of me. I could not express any of these concerns to the doctor because frankly, he did not care. I have never hated a man so much in my life.Â
Thankfully, I never went back to that doctor. After my appointment with him, my mom and dad decided we needed a second opinion. The rest of my journey was filled with supportive, empathetic doctors and specialists that made sure I was in the best care. After finding a brilliant (new!) doctor, we took a trip up to the UCSF children’s hospital. I remember being so petrified to the point that even my own mother could not comfort me. My mom is my best friend and in that moment I pushed her away; this still haunts me to this day and I am so sorry mom. As we sat in the waiting room, I was met with agony anticipating my name but dreading it being called because what if this was the same as last time? What if there was no relief? A few minutes ticked by and then I heard “Samantha Roach” being called by a friendly nurse. Once again, I was met with an x-ray machine wondering what my fate was with this new doctor. I was in the same situation as I was at the previous appointment: sitting in a room, sobbing, waiting for the doctor to enter. Except this time, the doctor who walked in was a friendly, supportive, charismatic man. He was the polar opposite of the one I once dealt with. My parents informed him of the previous doctor’s recommendation of 23.5 hours a day. This kind man looked at us in shock and said, “I don’t know what’s wrong with that doctor because I see no reason to wear it more than 16 hours a day. You can either choose not to wear it to school or when you go to sleep.” The sense of relief I felt was indescribable.
The next challenge I faced was actually getting the brace. I found myself back in another waiting room wondering how this appointment would turn out. Thankfully, the woman sizing me for my brace was a living angel. Her name was Candy and she just so happened to be sweet as candy. After she sized me, the brace had to be built which meant even more waiting. (yay.) When it was finally finished, I was filled with apprehension. Candy continued to be a supportive light and assured me it was going to be okay. Every appointment I had, she helped me feel better about my scoliosis. Candy became one of the pivotal characters in my scoliosis journey.
When to wear my brace was a no brainer for me: to sleep. I wanted to hide my diagnosis from everyone; there was absolutely no way I would wear it to school. I was afraid everyone would make fun of me. They would surely wonder why every time I ran into something there was a “thud” from my brace or why it looked like there was a box under my clothes. Not wearing it to school meant wearing the brace to bed and although I was nervous about the comfort, honestly, anything was better than wearing it in front of my classmates. To my surprise, the brace never affected how I slept. I could sleep peacefully every night even with the bulky thing wrapped around my torso.
After a while the brace became part of me. I had consistent checkups with great doctors. My family, especially my parents, were an amazing support system. I learned to live with scoliosis. I wore the brace every day for three years from 2017 to 2019, until finally I was released from it. My life for those three years was Samantha and her brace. Little did I know that my back being shaped like an “S” would change my outlook on life.
Going through this challenge made me stronger. I no longer view my scoliosis as something to conceal. Instead, I proudly tell people about my curvy spine. I remember the first time I posted about my scoliosis; I was nervous but incredibly proud of myself. Everyone was so supportive, and I never received the rude comments I was worried about. I no longer let the fear of people’s reactions to my scoliosis define me; instead, I let my scoliosis be a unique part of me that brings me pride and love. Today, I often repost stories on my Instagram from scoliosis advocacy accounts, especially in June since it is National Scoliosis Awareness Month. I love spreading awareness about scoliosis all over my social media because I hope my advocacy inspires young kids, just like 11-year-old me, to embrace their scoliosis rather than hide it.
Scoliosis made me appreciate the little things in life. Things that people would see as “imperfections” are now beautiful to me. For example, I took floral design in high school where we created floral arrangements and I often found myself reaching for the flowers that had a curvy stem because they reminded me of myself. I find myself reaching for the fruit at the grocery store that people would call “unusual” or the decorations that are out of the ordinary. My condition opened my eyes to appreciate quirky things as unique and loveable. This outlook has only made my life sweeter.
If you are currently living with scoliosis, embrace it. While that may seem easier said than done, I promise it will change your life for the better. Lean on your support system; my mom and dad were my rocks. Learn about your condition and if you are up to it, spread awareness. You never know who you might help.
If you would have told 11-year-old me that I would be proudly advocating for scoliosis by telling people about my condition and even writing this article, I would have never believed you. If my advocacy helps even just one person, I am happy. I know 11-year-old me is proud of my new outlook on life and my love for scoliosis.