How I Turned Terror into Triumph

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by Ryan Berhar |

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Although we naturally avoid trials, those are what build character. Good times are wonderful, but they do comparatively little to prepare us for inevitable hardships. For me, the most terrifying experience of my life turned out to be the most beneficial experience of my life, both mentally and physically. Let me explain.

One of the many fantastic benefits (kidding) that come with SMA is this thing called scoliosis, which causes our spines to gradually curve. This took a major physical toll on me by causing my left lung to regularly collapse. As a result, for the first nine years of my life, if I caught a simple cold, it would likely escalate into pneumonia — an illness I dealt with probably twice a year on average during this time. So, not only did I miss school when I was sick, my mom also pulled me out of classes occasionally to prevent me from catching whatever was going around. I needed a tutor to keep up.

At 9 years old, I got a spinal fusion, which is the only way to fix this problem. This procedure stopped the scoliosis by straightening my back with titanium rods. This surgery required a great deal of preparation and research on the part of my family. It isn’t something you want to mess up. “Oops, sorry! We accidentally nicked a vital organ.” While I doubt that would have happened, it was a challenge finding a surgeon who would perform it the way we wanted. As is the case with most things, different doctors have different methods. Finding the right person for the job required us to travel across the country to New Jersey. Twice. Because of how difficult it is for me to travel, this added significantly to the trauma of the ordeal.

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The operation itself was about 10 hours along with a couple of weeks of recovery. The surgery is no minor undertaking for anybody — especially for a 9-year-old. So at this point, you’re probably wondering, “Why do you consider something so daunting to be the most formative experience of your life?”

Throughout my younger years, I knew I would have to go through this. And yes, as I said, it was terrifying. I tried not to think about it, but it was always in the back of my mind — hovering like a dark storm cloud. But the reason it was so life-changing is that I have not really feared anything since then. If at any point I feel intimidated, I stop and think, “If 9-year-old me could get through that, then 21-year-old me can get through anything.”

While it had a profound impact on me mentally, the benefits of the surgery do not end there. In fact, it’s safe to say that it saved my life. As I said before, respiratory illnesses were a regular issue for me prior to the fusion. My left lung was compromised because of the degree of my scoliosis. But once my spine was straightened, my lung was allowed to inflate better and develop more normally. Since then, these kinds of sicknesses have been nearly non-existent — I have only had pneumonia once!

Even though they’re unpleasant, our trials make us better. I can look back on my roughest times and say that they improved my character the most. My spinal fusion surgery has given me so much mental fortitude.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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