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 columns. Many made me chuckle, bringing fond memories to the front of my mind, while…
No Good Excuse - a Column by Sean Baumstark
Living with a progressive condition like Friedreich’s ataxia (FA) means consistency can be hard to find. I’m sure you can imagine the ups and downs I deal with concerning my health. FA’s progression forces me to adjust my routines weekly and sometimes even daily. I’m blessed to still be…
I always joke a lot about getting older. Although there might be some perks to remaining in my 20s forever, I’ve never been afraid to grow old. I do fear, however, that some of my goals might be cut short by Friedreich’s ataxia (FA). I’ve grown comfortable with the…
I’ve heard it a thousand times: “Experience is the greatest teacher.” And although there’s a lot of truth to that, I’m not sure it covers every situation. I, for instance, often repeat frustrating or disappointing experiences and wonder how I let myself continue the behavior that led me there. In…
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 accept as a disabled individual. Since then, the topic has come…
I was recently driving in an unfamiliar city one night after work. As I exited the freeway, I noticed that the headlights behind me abruptly entered my lane and were right on the rear of my car. After realizing the other vehicle wasn’t law enforcement, I wondered if I’d inadvertently…
Deciding when to disclose certain aspects of my life, and to whom, can sometimes be challenging. Although I’ve got a handful of things I don’t necessarily advertise, my living with Friedreich’s ataxia (FA) can be a bit glaring when I meet people for the first time. When I’m…
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…
Much like fingerprints, many experiences are similar at a glance but unique upon closer examination. This is especially true in the rare disease community. Although our conditions are very different, we have many things in common. This has been on my mind recently due to an unexpected source. My friend…
I feel fortunate that I still enjoy a lot of independence and mobility, despite Friedreich’s ataxia (FA). My progression has been slow and mild compared with many folks with the disease. I’m 42, my heart is healthy, and I still walk. Although I started using a rollator a few…