When I tell people I have Scoliosis I’m surprised by two things. First, by how many people do not know what it is. Second, by the number of women I know who have some form of this condition. The best way I can think to describe Scoliosis is simply a curvature of the spine. Girls are at a much higher risk for developing this condition than boys. There is no definitive cause for Scoliosis. Studies have been done relating to many factors such as heredity, ethnicity, and age, but none have conclusively determined a cause.
My journey with Scoliosis began the day I went to the doctor following a bout with Lyme Disease at 12 years old. A routine physical exam exposed a small curvature in the bottom of my spine. My doctor advised us to consult an orthopedic surgeon who in turn suggested coming in every few months for x-rays to monitor the progress of the curve. Thus began the part of my adolescence I prefer to forget, to sweep under the rug and pretend it never happened.
As my body grew, the curves in my back increased to the point where the only option to slow their progress was for me to wear a back brace. I refer to the back brace as a modern day straight jacket for teenage girls. If you do a Google image search for “scoliosis back brace” you will be confronted with a series of pictures that depict what look like medieval torture devices. The amazing thing is that, 20 years later, the treatment options for Scoliosis remain the same: back brace or surgery.
The brace that I wore was composed of hard plastic that covered my chest and went down past my hips. The icing on the cake was the three huge Velcro straps used to tighten the brace so the internal pressure pads could do their job, constricting motion and muscles that might cause the curves to grow. Finding clothes to cover the edges of the brace was a near impossibility and I cried many times in front of the mirror when figuring out what to wear.
Wearing this shell sixteen hours a day for two years was a living nightmare for an introverted, active teen who played a sport and loved being outdoors. Over the course of my treatment, all of the doctors I worked with were men. As puberty hit and my breasts grew, I was in constant pain from the chafing plastic.
Appointments were made, humiliating measurements were taken where a man would stand, hand on chin, furrowed brow, trying to determine how to melt the plastic in such a way that would make room for my aching chest.
It was impossible to feel pretty or cool when I was wearing that brace. I felt hollow and insecure.
Sleeping at night also presented its own set of challenges. If I lay on my side, the pressure pads would dig into my body, leaving bruises. If I lay on my back, the top of the brace would dig into my neck. If I lay on my stomach, the front of the brace would constrict and pinch my skin. I wore cotton tees under the brace that were soaked with sweat every morning. I felt totally gross.
Eventually my curve progressed to 48 degrees, the point where my doctor recommended surgery that would fuse my spine using bone from my hips, along with a steel rod. I emphatically declined. My body stopped growing during the course of wearing the brace, so the curves would not get any worse. I feel incredibly blessed not to have a disfigured body. One of my hips is higher than the other, and if you look closely when I’m wearing a bathing suit, it’s kind of obvious that something weird is going on with my back. But there are many women who struggle with far more physical issues stemming from their Scoliosis.
Today I still have three small scars that were a result of the back brace; two on my back, and one on my stomach. The scars on my body are nothing compared to the emotional scars that Scoliosis left on me. Being a teenage girl is one of the hardest things ever. There is so much pressure to be popular, smart, and beautiful. Development of self-esteem is either encouraged or damaged during those fragile years, and being different isn’t something that is always looked on favorably.
It was impossible to feel pretty or cool when I was wearing that brace. I felt hollow and insecure. It’s horrifying to me that girls today still have to fasten the same Velcro straps I did twenty years ago.
When I was going through all of this, my parents were by my side doing the best they could to see me through the challenges. My mom took me to every doctor appointment while I cried and yelled and cursed at her on the way to their offices. There was so much anger inside of me, so much hurt and pain that I couldn’t convey for having to wear this device, for having to deal with unemotional doctors who had nothing to say to a scared teenage girl who just wanted to be normal.
The scars on my body are nothing compared to the emotional scars that Scoliosis left on me.
I share my story in hopes that it will incite a deeper understanding for parents and loved ones and friends who are helping a teen through a similar situation. Encourage them. Remind them of their beauty. Shop with them for pretty clothes that will cover the ugly edges of the brace. Talk about the situation to gauge where they are emotionally. Do not remain silent and pretend the pain doesn’t exist. And don’t ever knock on their brace as a joke.
I now go to the chiropractor every two weeks for an adjustment and therapeutic massage, which has helped enormously when it comes to managing lower back and neck pain. Some weeks I go in and feel fine until my therapist touches a muscle in just the right way and I suddenly realize the muted pain I’ve been carrying around.
I have very few limitations as a result of my Scoliosis, but I am always aware it’s there. I fervently hope that someday a more effective, less tortuous treatment option will become available for young girls who find themselves where I was twenty years ago. Until that day comes, family and close friends who demonstrate compassionate kindness are the healing balm, along with the understanding that this too shall pass.