No Good Excuse — Sean Baumstark

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…

“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 a standstill and most of my mental capacity was consumed by…

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 there are more urgent issues, such as cardiomyopathy and mobility…

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 to us. I hadn’t given much thought about the topic of…

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 or environment encompassing life right now. One word that’s…

It’s obvious that things don’t change simply because we turn the page on another calendar year. Typically, the early weeks of a new year set the stage for considering new goals, establishing new disciplines, and developing new habits for pursuing what is important to us.

I’ve often heard about the multiple stages of grief, especially when faced with the loss of my dad. I’ve wrestled with grief as I’ve come to terms with expectations for myself following my Friedreich’s ataxia (FA) diagnosis. On my podcast…

I hear parents say it often: “I felt helpless.” Sometimes I’ll hear these words during an interview on the podcast I co-host, “Two Disabled Dudes,” while other times I’ll read them in blogs, on social media, or in other columns…

It’s almost unbelievable that we continue to be significantly impacted by the COVID-19 pandemic. In many ways, the effects of the pandemic are greater today than they were nine months ago. In March, I remember thinking that it would…

I’m grateful to be alive in this day and age. Of course, I’m grateful to be alive at all, but there is something special about the tumultuous, stressful, and unique circumstances that humanity has been experiencing recently. Many things are heartbreaking and maddening, too, but I feel privileged…

If there is one thing we all wish for, it is to have more time. Whether we wish for more time to work on an essay, prepare for an interview, be with a loved one, or as in my case, to sleep, we’re rarely satisfied with the allotment…