Author Archives: Sean Baumstark

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…

“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.

There’s never a “good time” for the world to face a pandemic, or for a region or community to deal with such a significant threat to our health and lives. I suppose we can do or could have done certain things to be better prepared. And I’m sure…

I feel like I’ve recently made a huge decision. To some, my choice may be a no-brainer, but others may relate to the tug of war I’ve had with myself. Whether you can relate or not, if you know me and my get stuff done…

The podcast I co-host, “Two Disabled Dudes,” is celebrating a major milestone this week: We recently broadcast our 100th episode! It’s been a wild three years, and neither my co-host, Kyle Bryant, nor I expected to make it…

If you follow me on social media, you probably saw this column coming. In fact, I feel like I can’t write about anything else this week other than my recent travel experience. To be fair, I’m not writing out of frustration or anger, and I’m not…

I’m realizing that short-term disability insurance provides value beyond the financial benefit. Of course, the continued flow of income is important when it helps sustain your overall well-being and allows you to remain independent. My state-sponsored disability insurance helped me to stay on top of my recurring bills,…

Change seldom happens by accident or coincidence, especially when it involves other people, such as with rules, laws, policies, job promotions, and so on. The weather and the ocean tide will change no matter what we do or don’t do, but the rules of aviation and fishing will…

Those who know me know that I have little, if any, tolerance for poor service. I’m sure this is deeply rooted in my years of working in the service industry. I’ve worked in restaurants, hotels, and grocery stores. All three jobs put me face-to-face with guests and customers.

We are wrapping up the first month of the year. Are you glad to be moving forward, or are you wishing time would slow down? The saying “Time flies when you’re having fun” doesn’t seem to need the quantifier of “fun” for me. Time does…

I recently wrote a column about trying something new, and I challenged readers and myself to get out of our comfort zones. I’ve been trying many new things lately. Well, not brand new things, but things I haven’t…

I’ve been thinking about the “bare minimum” in the context of guest or customer service. Many companies would argue that their success, or a healthy amount of it, is due to the extraordinary service they provide their patrons. This makes sense. In a world of plenty…

The start of a new year always seems to bring new goals and commitments. I’m sure you’ve thought about a thing or two, or have created a long list of resolutions for 2020. Whether we’re talking about specific actions such as exercising three times a week, or vague…

I grew up as a picky eater. I was very “basic” in what I liked: graham crackers, mac and cheese, pizza, and popcorn. I didn’t dare venture out to vegetables or anything remotely green. And kettle corn is still nasty. If you were to ask me to share…

I’ve been contemplating a metaphor of sorts, inspired by festivities of my family’s holiday traditions. I’m not sure if this is a thought process I’ll cling to very deeply, as it’s still new to me. However, I wanted to write about it now and invite you along on…

I recently wrote about my gratitude for the people I’ve been privileged to meet and build friendships with since my Friedreich’s ataxia (FA) diagnosis. My frame of mind when writing that column was affected by the outpouring of love and well wishes…

I often struggle with two opposing principles of thought: I have a strong animosity toward Friedreich’s ataxia (FA), and I have a deep gratitude for life because of it. The animosity is easy to understand. Even for those unfamiliar with…