Sean Baumstark lives with Friedreich’s ataxia and embodies the mantra “get stuff done.” Sean ran his first 10k three weeks after being diagnosed in 2007. He believes excuses hold us back from being our best. He is the founder of de:terminence, a nonprofit helping disabled individuals experience the beauty and power of physical achievement. He is a subject in the documentary film, “The Ataxian,” which chronicles a four-man team competing in Race Across America. He co-hosts the weekly podcast, “Two Disabled Dudes,” which encourages listeners to “live beyond circumstances.” He lives and works in Sacramento, California.
I can’t put my finger on exactly what triggered my recent musings about responsibility, but apparently, we can’t escape our thoughts. Trust me, I’ve tried. My last column focused on the heightened sense of responsibility I’ve learned to…
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Last week, my mom and I visited my aunt and uncle, or her sister and brother-in-law. The trip was different from most of the trips I take, and I’m recognizing that my Friedreich’s ataxia (FA) progression is likely to…
I participated in a group discussion with fellow Friedreich’s ataxia colleagues Matt Lafleur and Kyle Bryant, along with host Ally MacGregor, to kick off “Movember,” a monthlong effort that…
I’m spending a couple days on the road right now, sharing some of my story and philosophies at a fundraiser. This is the first in-person event I’ve participated in since friends at Amicus Therapeutics invited me and…
It’s peculiar how much of life occurs in cycles. One day I feel like I’m on top of the world, and a week later I’m lying in bed due to exhaustion or sickness. One day I feel like I’ve…
There’s nothing quite like the realization that you aren’t following your own advice or philosophies about personal growth as well as you could be. At least, that’s the case for me right now. Yet again, I’m feeling grateful for…
I recently wrote about finding value in allowing myself time and mental energy to contemplate my reality, especially the hard parts. I don’t remember exactly how this initially came up for me, but it’s been on my mind…
It seems that the best time to plan ahead is always yesterday, or several hours ago. No matter how much thought or energy I put into planning ahead, it rarely seems sufficient. I suppose I should remember the alternative…
If you’re anything like me, you spend a lot of mental energy thinking about “what might be” and dreaming about “what could be.” I’ve always had big aspirations, and I reach for the stars when I set my sights…
I pride myself on getting a lot done and being a productive individual. Although I enjoy some downtime here and there, I often feel pressure from my unfinished tasks or my never-ending to-do list. That pressure makes it…
Today at work I participated in a meeting, which was really just a gathering of co-workers for the purpose of connecting and visiting with one another for a couple hours. We all worked through a version of an icebreaker…
Life is more fragile than I sometimes realize. This is true for everyone, rare disease or not. Most days, I feel invincible and think about the next 40 years of my life. On other days, I recognize that I…
Advocacy seems to be taking on a new meaning for me as the years pass and I become more comfortable in my own body. In addition to increased confidence in myself, the Enneagram personality test I previously wrote…
“Are you living by design or by default?” My friend asked me this while we were catching up over dinner after local restaurants started serving on outdoor patios again. My friend knows…
There will always be more to learn in this life. No matter how many years I live or how many experiences I have, I can’t possibly know it all. This is surprising to some degree, because when…
The light at the end of the tunnel can seem elusive and bright at the same time. Perhaps it’s a tug of war or a bit of yin and yang activity, but it’s ever-changing, especially in relation…
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…
“Can you send help up, preferably a gentleman?” I asked as I lay on the cold tile floor, mostly motionless and without clothes — only a wet towel. Although my body was at…
I was diagnosed with Friedreich’s ataxia (FA) in 2007 after searching for answers to the consistent and heavy fatigue I was experiencing. In case you aren’t familiar with FA, fatigue is commonplace, but…
Since being diagnosed with Friedreich’s ataxia (FA) in 2007, the words “rare disease” have been commonplace in my vocabulary. Like many things, we often don’t pay attention to something until it specifically matters…
I’ve been thinking lately about my goals for 2021 and my vision for life. This is a fairly common mental exercise, given the recent start of another calendar year. However, there is nothing routine about the circumstances…
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