While Pondering FA and Life, I Remain Hopeful
I’ve spent the last six weeks planning and thinking about the things that are important to me. Most of my time and mental energy is focused on personal goals, finances, de:terminence (the nonprofit…
No Good Excuse — Sean Baumstark
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.
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After 5 years of writing, I’m taking a risk and making a change
I’m just a few weeks from crossing the five-year mark since writing my first column for Friedreich’s Ataxia News. With that milestone approaching, I went back and read some of my old…
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Living With a Progressive Disease Means Adapting to Change
In some ways, I’m probably late to the party. Like many of my friends and fellow columnists at Friedreich’s Ataxia News, adapting to change has been part of living with a progressive…
Avoiding Distractions Is Key to a Successful Year
It’s hard to believe we’ve started another year with COVID-19 still in the headlines and on everyone’s mind. I’ve always felt that each year passes faster than expected, but the past two years seem…
Planning Today Allows for a Stronger Start Tomorrow
This time of year is always chaotic yet fun for me. I enjoy good sweater weather, hot cocoa, and the many Christmas lights I see while driving around town. The chaos comes in…
Taking My Time May Allow Me to Get More Done
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…
Lessons I’m Learning About My Mental Health
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,…
My Independence May Change, but Not Go Away
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…
Grieving the Loss of Abilities as My FA Progresses
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…
The Way I Manage My Symptoms Offers Insight Into Personal Growth
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…
Putting My Challenges Into Words Lightens the Load
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…
Planning for Tomorrow Is Worth the Effort Today
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…
Allowing Time to Contemplate My Disabilities Is Helpful
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…
Finding Grace in Relatable Stories From My Community
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…
Finding the Rose Among the Thorns of Rare Disease
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…
How Reflecting on My Life Increases Urgency For Me
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…
Advocacy Does Not Require a Megaphone
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…
The ‘Default Mode’ Is Not the Only Option
“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…
How the Enneagram Has Changed My Interactions With Others
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…
Little Things Inspire Hope When Living With Friedreich’s Ataxia
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…
Rare Disease or Not, Only I Can Define My Success
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…
