Rare Disease or Not, Only I Can Define My Success

Sean Baumstark avatar

by Sean Baumstark |

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I’m approaching what can easily be labeled the midpoint of life for the so-called average person. Of course, such averages rarely take rare disease into account. But even without the progression of Friedreich’s ataxia (FA), living to (almost) 40 is no easy task. I mean, just think about what some of us have been through. “Hammer pants and Y2K come to mind.

In hindsight, I can chuckle about the Y2K bug and the doom that people feared it would unleash upon the world due to untested limits on the digital numeric construct. The Y2K scare was buzzing around for many months, if not years, but inevitably was of no concern the moment clocks struck 12:01 a.m. on Jan. 1, 2000. 

Imagine if all of the challenges, heartaches, and turmoil we’ve faced faded away as quickly as the concern of Y2K did. Whether considering my challenges due to FA, or the more recent and ongoing hardships due to the COVID-19 pandemic, there is always something that causes me to pause and wonder, “What if?”

What if M.C. Hammer wore skinny jeans?

More often, I find myself wondering about what might have been, had my life unfolded more closely to some of my original dreams and expectations.

While I was at work today, a friend asked about my perception of my own success. He was curious about whether I believed my life has been successful. Although we spoke only briefly, the exchange caused my mind to wander. 

I realize that everyone defines success differently, just as beauty is in the eye of the beholder. But deep down, there is an almost natural comparison to what I thought my life would be like and what it actually is today. And sometimes more challenging is the common comparison of how my life stacks up against that of the Joneses. 

There are a handful of things about my life today that my younger self would find surprising, maybe even jaw-dropping. However, there are hundreds of things that my almost-40-year-old self and my younger self can both be proud of.

I wasn’t given a road map for life with a rare disease. There is no GPS for navigating the failures and mistakes in my life. But the older I get, the more I realize that those turns in the road are more like detours than they are U-turns.

I believe life is made up of two main choices: what I make of it and what I accept of it. Hardships and challenges will continue to show up like annoying speed bumps in an empty parking lot. There is no good excuse for allowing those things to cause me to park the car and build my home in their midst.


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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