Author Archives: Sean Baumstark

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…

There is a first time for everything, right? That’s a phrase I often hear and it is true. A baby’s first words, a teenager’s first driver’s license, a first speeding ticket, a first kiss, a first house … the list is endless. A first broken bone…

The difference between determination and stubbornness is becoming more and more clear. With the recent fracturing of my hip and weeks of inpatient rehabilitation, I’ve found myself teetering on the thin line that separates the two. I’ve always thought of myself as a determined individual; someone…

If I didn’t know that the endgame for physical therapy is to be fully functional again, it’d be easy to come up with excuses to just stay in bed right now. Physical therapy isn’t fun or easy, but it is a necessary friction. Thankfully, I am…

The topic of this column might be my ultimate excuse for not writing. Before I explain, I want to remind readers that I am an advocate for taking care of your health and prioritizing rest. I’m…

As I write this, I want nothing more than to go home and crawl into bed. Today has been longer and more exhausting than usual. I don’t write about my job often, but I did mention how significant the company is…

Once again, this weekly writing exercise is proving to be more beneficial than I ever imagined. In a sense, writing and posting my thoughts for the world to read is life-changing. It is a catalyst for tangible transformation of my habits and routines. I’m happy to…

I’m currently beating myself up a little, mentally speaking. I’m finding it hard to swallow my own “no excuses” medicine.  I’m sure you already know that preaching the “no excuses” mantra is much easier than putting it into practice.

I recently attended the Global Genes RARE Patient Advocacy Summit in San Diego. While there, I had the honor of co-facilitating a panel discussion during one of the main sessions. I co-host a weekly podcast with my friend Kyle Bryant, and…

I’ve noticed that I often get held up or feel paralyzed by the excuse of not knowing what to do. I label it as an “excuse” because I believe that doing nothing is never the right thing to do. Of course, there are some things we…

I recently traveled to the bona fide destination wedding of some dear friends. The groom has had a significant and recognizable impact on my life so far. It so happens that the “recognizable” factor is what led to his first meeting with his now-wife, too. You…

There are more than 7 billion different opinions in the world — one for each person on this planet. I’m not an authority on much, but I think many of those 7 billion people would agree with this ideal: We are each responsible for our…

When the time came to sit down and write this column, I hadn’t given thought to a specific topic. This doesn’t usually concern me, because I often jot down notes, moments, experiences, or ideas that come to mind throughout the week. Then, I simply dig…

I know I have to practice before it is reasonable for me to meet my expectations or achieve what I set out to accomplish. Although practice sessions can be tedious, time-consuming, and sometimes frustrating, the “routine” practice is commonplace. Routine practice…