Living with Friedreich’s ataxia reminds me to make the most of life

Pondering my mortality motivates me to live with urgency

Sean Baumstark avatar

by Sean Baumstark |

Share this article:

Share article via email
Banner for

I can’t put my finger on why, but lately, I’ve been thinking about how fragile and short life is. More than ever, I feel challenged to make the most of my time on earth.

I’m sure everybody has a similar realization at some point. Whether we feel close to death ourselves, perhaps following a car accident or a close call while hiking, or see a loved one in a precarious situation, there comes a time when we truly understand our mortality. I’ve had a handful of these moments, but the first was when I was diagnosed with Friedreich’s ataxia (FA).

I’d decided to pursue some testing because I’d always felt abnormally tired. That was my biggest concern then; no matter what I did, I couldn’t shake the chronic fatigue. A couple months later, I was told that I’d eventually be dependent on a wheelchair, unable to tie my shoes, and would likely die prematurely due to cardiomyopathy.

Recommended Reading
Rolling dice indicates risk in this illustration.

Ataxia at first assessment predicts four-year functional outcomes

I was shocked, as all this information sounded incredibly foreign. I wasn’t showing any symptoms beyond fatigue, and I had difficulty understanding why that would limit my walking ability. I remember feeling a sense of confusion and disbelief, though it was clear the two professionals in the room were not joking.

Shortly after my diagnosis, I went on a day hike with some friends, and that’s when I decided I would give life everything I’ve got, no matter how long or short my time may be.

Living with urgency

Today, my FA symptoms are noticeable and always on display. The prognosis of my disease is irrefutable, and everything my doctor said in 2007 makes sense now. Thankfully, my progression has been slow, and I’m mobile with the help of a rollator. And my heart is healthy, without any immediate concerns.

However, life is still short, and death is inevitable.

Perhaps watching my mom fight leukemia and hearing about the recent passing of a friend who lived with FA for over 30 years are to blame for this topic being front of mind. Whatever the case, I’m hearing a tagline from the podcast I co-host, “Two Disabled Dudes,” loud and on repeat: “Keep living with urgency.”

Whether I die because of FA or something else, I’m not concerned with how many years I’ll live, but how I live the years that I have. We only get one chance at this life, and there’s no good excuse for not maximizing the possibilities.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.