No Good Excuse — Sean Baumstark

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 organization I founded), and habits grounded in exercise. I also do a good amount of planning…

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 disease. I’ve read about Matt Lafleur’s tough journeys on his trike…

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 to have flown by even faster than usual. I’ve never kept track, but I don’t usually…

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 many different forms, such as people who aren’t used to driving in the rain, busier days…

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 blame. For starters, although I travel fairly often, I don’t usually…

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 aims to raise awareness about men’s health issues. Although we’re…

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 my podcast co-host, Kyle Bryant, to their office in…

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 learned so much and am excited to earn my degree, and…

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 this platform and the ability to write on a regular basis.

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 a lot lately. I’ve also begun to realize that there’s a…

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 to not planning ahead at all; such a situation could easily…

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 on something. I don’t easily give up or settle. I have…

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 hard for me to watch TV, especially a series I can…

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 activity commonly referred to as “Rose, Thorn, and Bud.” In…

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 may not lap the four-decade mark again. I know the prognosis…

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 about is still proving to be valuable in helping me understand…

“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 I’m highly ambitious, but he also knows that I can procrastinate…

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 I was younger, I thought all almost-40-year-olds had everything figured out.

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 to living with a rare, progressive disease like Friedreich’s…

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…