Living With FA Reinforces My Commitment to Making Progress

Sometimes moving in a positive direction is what's most important

Sean Baumstark avatar

by Sean Baumstark |

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Occasionally, a random and seemingly minuscule thought sticks with me and eventually consumes my mind. I’ve never thought of myself as intelligent, but I have always been hopeful that I am getting wiser as I age. Some of that wisdom reveals that not everything is black or white, up or down, or even necessarily right or wrong.

Of course, plenty of things in our world are undoubtedly wrong, such as running a red light, robbing a bank, or eating pizza with pineapple as a topping. I don’t think anybody will argue with that.

I recently had a virtual conversation with someone who asked my opinion about a potential treatment or cure for Friedreich’s ataxia (FA). Although I do follow the headlines, I’ve never been one to take a keen interest in the minute details of scientific research. So much of that feels over my head sometimes, and I’ve chosen to focus my energy on improving or sustaining a quality of life that I am proud of.

I’m happy to let the more intelligent ones tackle science.

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Factoring progress

In my brief and somewhat elementary response about the progress of FA research, I caught myself typing something to the effect of, “We’re moving in the right direction.”

I stopped myself before I could finish the sentence. There was something about saying “right” that didn’t sit well with me. I realized that I was suggesting that any other direction, by default, would have to be considered “wrong.” And I don’t believe that at all.

Instead, our community of patient advocates, scientists, and clinical professionals has made substantial progress in a positive direction. Progress is made daily, and moments of discovery and failure inform progress equally. Both ends of the spectrum help identify valuable information for the next approach.

Is there a better way? Probably. But that can only be found with trial and error.

This sentiment has consumed my mind lately, not just in terms of curing FA, but also of how I critique myself, compare myself with others, and find my place in this world. Could I have made different decisions? Absolutely. Can I spend my energy on more important things every day? Sure. Would I make another choice if I could do some things over? Of course.

Does any of that suggest I’ve done life wrong? No way.

There’s a proverb that states, “There’s more than one way to skin a cat,” which now makes sense to me on a deeper level. As 2023 unfolds, instead of seeing some of my decisions as right or wrong, I’m going to ask myself if I’m moving in a positive direction.

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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