Why Life With Friedreich’s Ataxia Is Like a Box of Chocolates

How columnist Sean Baumstark plans for an uncertain future

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by Sean Baumstark |

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One of the few lines I, and most others, remember from the movie “Forrest Gump” is, “Life was like a box of chocolates. You never know what you’re gonna get.” It often comes to mind when Christmas is approaching.

Of course, the film doesn’t typically make any Christmas movie lists, but for me, that famous line relates to many things, including the holiday season. Whether it’s a literal box of chocolates or wrapped gifts under a tree, I never know what I’m going to get.

When we were younger, my brother and I often negotiated and planned our gift exchanges. “If you get me this, I’ll get you that” was more or less the dialogue we’d have leading up to Christmas. In those years, we knew exactly what we’d get from each other, and we were happy with that knowledge.

Today, I never know what I’ll receive from my brother — or anyone, for that matter. Of course, I never know which flavors and textures to expect from my mixed chocolates, either.

Unfortunately, the same is true regarding life with Friedreich’s ataxia (FA). The disease’s progressive destruction of my body makes it increasingly difficult to know what to expect.

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While Pondering FA and Life, I Remain Hopeful

Planning for an unpredictable future

I know I’m slowly losing my ability to remain steady and balanced as I move about my house or workplace. I must be careful as I get in and out of the shower. I’m aware of the issues FA poses to my spine, and I’m cautious of the lasting impact it can have on my heart. I suppose I can expect my FA to worsen over time.

The hard part is not knowing how quickly FA will progress or how severe my symptoms will become. This has me contemplating my expectations and considering adjusting them.

I recently came across a short video clip that showed me getting up from a couch and turning to walk to the kitchen. It wasn’t until I saw the video that I realized my capabilities have worsened dramatically over the past year.

Thankfully I’m still ambulatory and can manage my day-to-day activities independently. But that video clip is seared into my mind, challenging me to be more cautious as I continue planning my short- and long-term future.

This timing may be serendipitous. At Christmas, I will celebrate life, family, friends, and my many joys. I will enjoy the chocolates and the sweet surprises they deliver. Then, as the new year approaches, I’ll reevaluate my expectations and goals regarding my health and abilities.

I hope you enjoy this holiday season and find ways to prioritize your health, happiness, and ability to enjoy life. There’s no good excuse to ignore what’s important to you.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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