Scoliosis is and always will be a struggle for me. The pain plagues me, both in and out of my brace, and can make it difficult to concentrate and even run some days. But I will not let it stop me from doing anything. I have learned to love my spine. It makes me unique and defines who I am, and I am a stronger person because of my brace—emotionally, mentally and physically. My brace is both my best friend and my worst enemy.
In August 2012, I first discovered I was crooked. My high school cross-country coach noticed that I ran tilted, with one shoulder much higher than the other. When I finally saw the doctor, he told me I had scoliosis. The next two years were filled with many doctors’ appointments and endless poking and prodding to my back. I had an 18-degree “s” curve, which increased to 24 degrees in December 2012. By April 2013, I learned that my upper thoracic curve and lower curve had increased to 32 and 25 degrees, respectively.
I knew that I would eventually need a brace, but when the doctor showed me that horrible piece of ugly plastic, it was a whole different story. I turned into a statue.
When my brace was ready for me to wear, the orthotist who makes the braces showed me an assortment of patterns—Scooby-Doo, butterflies, tie-dye, rainbow, pink and white—but I chose flesh-colored, the most inconspicuous of them all.
My brace stretches from over my hips, with the left side reaching down to my thigh, to the top of my rib bones in the front and above my shoulder blades in the back. When I first tried it on, I felt like I was strapped in a corset, the air escaping my lungs.
I was instructed to ease into my brace and wear it a couple of hours at a time. The first night I wore the brace, I felt like a turtle flipped on its shell. When I started to wear it at school, I wore it for three hours and then took it off in the nurse’s office. In a few days, I became frustrated with having to go to the nurse’s office, so I wore it the entire school day. My only break from wearing the brace was showering and running.
When I run, I feel as though I am released from a cage. I love the feeling of my body being free, but sometimes it feels so foreign and weird to be without my brace.
Part of wearing a scoliosis brace is adapting to doing things differently. I have learned to not eat food and then put on my brace (which I frequently forget and then pay for dearly with a stomachache). I have become aware of time and my responsibility to remind myself to put on my brace. During the summer, I sleep in air conditioning and avoid going outside in the heat for long periods of time. I put powder on my stomach to soothe the rashes it causes. I am not able to bend down normally, so I squat to pick things up, or have a friend help me. I have learned to adjust to moving in my brace to live as normally as possible.
Like any 15-year-old, clothes and fashion are very important, but when I first tried on my clothes with the brace, its entire outline was visible. At first, this upset me, but then I took it on as a fashion challenge. I rearranged, layered and accessorized my clothes until the shape of my brace was hardly noticeable.
Last summer, my mom and I started what we call the “Chloe Project,” my way of fighting scoliosis. To strengthen my muscles equally, my body must be neutral. After talking it over with my orthopedic surgeon from Boston Children’s Hospital Orthopedic Center, M. Timothy Hresko, MD, I started a new exercise program.
I swam every other day (my body was neutral in the water). I do Pilates once a week, as well as Schroth physical therapy, which is a German technique specifically designed for scoliosis. There are postural and breathing exercises that are performed to help neutralize the curve of the spine and help ‘de-rotate’ it. To perform the exercises, I had to know everything about the curves and twists of my spine, and it requires lots of concentration. But I do anything I can to fight back because I don’t want to look back someday with regret for not attempting everything in my power to fight my scoliosis.
My support network
I am blessed to have the best family and friends to support me. Originally, I was afraid that my friends would think my brace is weird, but instead they seemed excited about it. One day, I had put my brace on the ground at cross-country practice, and one of my friends asked if she could try it on. I of course said “yes” and strapped her up. After her turn, every other girl on the team asked to try it on, and not one of them lasted more than 30 seconds in it.
At the beginning of my scoliosis journey, I thought I was all alone. Even with the most supportive family and friends, I felt that I had no one to relate to who would truly understand what I was going through. That is when I became a Curvy Girl.
Curvy Girls is an international support group for girls with scoliosis. When I found out there was no New Hampshire (NH) Chapter, I created one. We meet once a month and talk about our braces, surgery, clothing, pain and anything to do with scoliosis. There are plenty of tears, but also lots of laughter. Wearing my brace for the correct amount of hours is tough, but starting Curvy Girls NH and meeting other girls with scoliosis has helped all of us.
I would not change a thing because without my scoliosis, I would not have met so many wonderful and inspiring girls who have become my friends. I hope to help other girls “embrace the brace” like me. Although I do not know how many years I will wear my brace, or if I will have to have spinal surgery, I am ready to face whatever comes my way and not back down.
To speak with a Boston Children’s scoliosis expert visit the website of our Orthopedic Center or email firstname.lastname@example.org