No Good Excuse — Sean Baumstark

“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…

Many things in the news lately have me thinking about the many aspects of life in which the power to affect change is in numbers. The most obvious example currently is voter participation in a democracy. The United States is neck-deep in a presidential election…

I’ve had the privilege of making a lot of friends in the rare disease community since becoming a member myself. I’ve had many conversations about the day when someone knew something wasn’t right, and about the day a doctor or a test confirmed that hunch.  One…

I recently wrote about the importance of developing habits and disciplines that will help us move toward particular goals and objectives. Although that isn’t a new or jaw-dropping concept, actually taking action in that direction can be harder than we often admit.

The year 2020 will mark stories of history for generations to come. This year continues to call attention to areas of opportunity, shortcomings, and perhaps failures across many areas of life — from global economic concerns to neighborhood-specific best practices.  Of all we can and will…

I’m confident we can all agree: We have no idea what tomorrow may hold. Whether we are talking about the stock market, our individual health, or simply the weather, many things can change drastically from one hour to the next.  Speaking of weather, that…

An underlying principle keeps revealing itself to me through many different things. I’ve heard the principle said in multiple ways, namely phrases such as “stay the course,” “stay on mission,” and “remain focused.”  There are many ways of saying it but the message essentially supports one…

A year ago, I wrote about the yearly calendar’s halfway point being a great time to check in on my annual goals and the routines I employ to accomplish them. Although we are halfway through 2020, I’m sure I’m not the only one…

I’m certain there are many things everyone can agree on: Planet Earth is round, what goes up must come down, and pineapple does not belong on pizza. You see, inarguable, right? Although many might agree, there are strong believers that our planet is…

As I write this, I just received word that a friend and co-worker passed away in his sleep last night. Unbelievable shock consumed me for several moments. My friend was in his early 30s and a fairly healthy guy who’s been working at the same…

As the impact of COVID-19 continues to loom over the globe, our concerns and worries seem to increase as well. What started for many as an issue in some faraway region of the world is now a pandemic felt by all humanity.