Living My Best Life with Scoliosis

On my first trip to Chicago at 22.

I have idiopathic scoliosis. What this means in layperson terms is that I have curvature of the spine, and its cause is unknown. I pretended for several years that I didn’t, but the truth is that I do. In the years since I turned 13, it has been more of an annoyance than anything else.

When I tried on my wedding gown at age 25, one of the people in the shop mentioned that I looked crooked. Or maybe there was that time in the gym when a “helpful” person mansplained that my posture was all wrong as I stood lifting weights. How could they know that my posture was permanently off? And how can I forget the time when I was in the hospital holding my newborn infant and a nurse mentioned that I seemed “off kilter.” I knew what they meant, but I chose to ignore it.

I never gave it a thought. And I didn’t want to. When I was 11, a nurse came to Benfield Elementary School when I was in the 6th grade to check students for the condition and my parents received a letter in the mail, which I immediately opened when I came home from school. I scoffed at the time and felt they had it wrong. Unfortunately, my dad recalled that his great aunt had it and died young as it was never treated. That scared me enough to start looking into things at the library the second I could.

The first book I found was an encyclopedia – that rather heavy book – which had pictures of x-rays showing some scary images of snake like curved spines that were shaped like the letter “s.” The next thing I found that was a godsend was the book “Deenie” by Judy Blume. Here was a book about a 13-year-old girl who had scoliosis voicing some of the same concerns that I had. She described how awkward she felt and her fears about what the future held. How did Judy Blume know I needed that?

But back to my diagnosis and the next steps. My mom drove me to Kernan’s Hospital just outside of Baltimore, a renowned medical center that served as a rehabilitation and orthopedic institute. There, I was given a full body x-ray that revealed I had a large curvature of my spine. I gasped and immediately got emotional when I was faced with the photographic proof. I was deformed. I already felt awkward after living overseas when I was young and attempting to immerse myself into an American school environment. But this would be the death knell of a possible social life. Everyone in my school played sports and even though I was awkward and not very good at being an athlete this would mean I would not be able to participate. Given how bad I was at being an athlete, regardless of scoliosis or not, it is highly unlikely I would have been selected for the lacrosse or field hockey teams.

I was quiet back then and not nearly as talkative as I am now, but I lamented the friends I would not make and the parties I wouldn’t be invited to because I would be different.

My doctor told me that I would need to choose between two horrible options. To wear a brace or I would be scheduled for highly invasive surgery that would keep me out of school for up to six months. However, there might be an alternative they were piloting. My ears lit up at this news. They had a device called a “scolitron” which you had to plug into the wall and charge and wear all eight hours of bedtime at night with electrodes that attached to your back and essentially worked to move your muscles and “push” the spine in the right direction. Although it was expensive and not covered by insurance, I begged my parents to get it.

Naturally, as soon as I tried the scolitron I decided it wasn’t for me. It hurt and I couldn’t sleep at all with the sensation of something mechanically moving my muscles at night. What a surprise. Six months went by with me lying to my parents until one night my mom came in and learned the truth: I wasn’t wearing it. She wasn’t mad, but I was taken back to Kernan’s immediately. Like the typical pre-teen that I was, I threw a fit. But my no-nonsense mother who had started her career as a nurse when she was 18, marched me into the rehabilitation center where I was able to see other patients with calamities much worse than my own. She asked me to look at the children. I was filled with shame as I noticed some of the people sitting in the waiting room. A young boy with clubbed feet sat smiling at me.

There really wasn’t any other choice but to wear the brace. So, I walked down the hall to where I was asked to disrobe, and I was hoisted up to be fit for the brace I would wear for two years. I recall being suspended while the plaster cast for my body was made. It was vastly uncomfortable and terrible awkward, and I was relieved when we could finally leave and head home.

On the next trip, I picked up the Wilmington brace which fortunately was on the lower part of my body and could be covered by clothing and fit to my body like a very tight corset. I was told I could only take it off for 30 minutes each day just to shower. This meant gym was out of the question. My friend Nicolle also had scoliosis and had to wear the Milwaukee brace which had a bar that went all the way up to her neck since her curvature was higher than mine. I was relieved that at least I could commiserate with someone who was a friend, but I can’t say either of us were too happy about it.

For the next two years I was in Middle School, which to me, is probably the hardest time of being a teenager. Life was the same and no one at school treated me differently as I made sure to wear clothes that were bulky enough to hide everything. Now that I am an adult, I recall the people I went to school with in my hometown Severna Park with fondness as no one ever made mention of anything that made me feel uncomfortable or stupid. Not even once. I think someone asked if I had a folder in my back when I was sitting and eating lunch, but it was more out of curiosity than anything stated with malice.

When the brace came off just in time for high school, I remember still wearing it to bed as a source of comfort. I had become used to it. But after a few weeks I was only too happy to throw it away in the trash and never look at it again.

And so, out of my head did the thought of scoliosis go until only recently. Out of the blue last year I started to have a dull pain in my neck which I assumed must be because I was using a bad pillow. My solution was to order two types of pillows to stabilize my head at night. This did nothing but the pain persisted. So, my husband John suggested I visit a chiropractor. The first thing they did upon my arrival was to take an x-ray and this is where I was greeted with the image I had long ago buried of my inner body and the sight was one that was sobering.

Over the decades since I had worn my brace, my spine had twisted like a corkscrew. My spine was now at a degree that made the muscles around my neck strain to hold my head up since they were working so hard to keep everything stable. This is not abnormal apparently. There are many accomplished people with the condition including the fastest man in the world, decorated Olympic runner, Usain Bolt, and renowned cellist Yo Yo Ma. Actors including Sarah Michelle Geller, Rene Russo, Vanessa Williams and Shailene Woodley also have scoliosis. I don’t see any of them complaining or letting it get them down. And I can’t see it stopping me either.

So, where am I at after all of these years and having to think once again about scoliosis? I marvel at what my body has done. It has given me two beautiful children who mean the world to me. It has taken me all over the globe and allowed me to have experiences I could only dream about when I was young. I have walked miles upon miles and still get up at the crack of dawn every morning to hear the spring peepers and see the foxes when I walk my dog.

And instead of being ridiculed or laughed at, I have been embraced by the people around me from my classmates in the town where I grew up to people I met in my jobs and friends I made at university. I have a thoughtful and caring partner for life. I recognize I am fortunate and although it might ultimately slow me down, I don’t plan to go down without a fight.

So, I’m trying some exercises, taking supplements, and working to manage the effects. I have never shied away from a challenge, and I don’t plan to now. The main thing is to continue living my best life and I intend to do that from here on out.