The ‘Default Mode’ Is Not the Only Option
“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…
No Good Excuse — Sean Baumstark
Sean lives with Friedreich’s ataxia and embodies the mantra “get stuff done.” He believes excuses hold us back from being our best. He is the founder of de:terminence, a nonprofit helping disabled individuals experience the beauty and power of physical achievement. He also co-hosts a weekly podcast, “Two Disabled Dudes,” which encourages listeners to “live beyond circumstances.” He lives and works in Sacramento, California.
Featured Post
The frustrations of living with FA come in many shapes and sizes
It’s usually easy for me to write about noticeable and significant issues related to Friedreich’s ataxia (FA), such as a severe hip injury or a new treatment option. Although I’ve written about seemingly insignificant, behind-the-scenes frustrations,…
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How the Enneagram Has Changed My Interactions With Others
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…
Little Things Inspire Hope When Living With Friedreich’s Ataxia
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…
Rare Disease or Not, Only I Can Define My Success
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…
Embracing the Awkward Moments That Come With FA
“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…
The ‘Right Time’ Can Be a Moving Target With a Progressive Disease
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…
Rare Disease Day Momentum Comes From Decades of Advocacy
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…
Why I Choose to Adapt to the Ongoing Challenges of a Progressive Disease
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…
Finding a Silver Lining in the Wake of 2020 and the Pandemic
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,…
Gratitude and Optimism Can Help Overcome Grief
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…
Other People Help Us Move Forward
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…
This Thanksgiving Will Be Different
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…
Make Plans, Not Excuses
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.
A Meaningful Life Requires Intentional Time
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…
Connecting With Others Helps Us Move Forward
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…
Using Our Voices to Aid Research and Prompt Change
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…
Focusing on One Thing at a Time
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…
Small Lessons Can Be Learned by Addressing Big Issues
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…
Push to Get the Results You Want
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…
Stay on Point and Avoid Distractions
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…
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