No Good Excuse - a Column by Sean Baumstark

push, avoiding distractions, self-care, what matters

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.

Awareness Comes in Many Forms

I’m often entertained every time I search online for any “national day of” lists. I don’t know who is in charge of them, but they seem to change often, and no one source agrees on every recognition. With May just around the corner, I am proud of a few things…

A New Approach to Asking for Help

I’ve had a central theme rolling around my mind recently: Perhaps I overcomplicate things. More often than not, to be completely forthcoming, the exact question has been, “Do we overcomplicate things?” But who am I to question the human race about how we may or may not complicate certain situations?…

My Lessons From FA Also Help Me at Work

I often compartmentalize all the significant elements of my life, and my journey with Friedreich’s ataxia (FA) is no exception. I work eight hours a day and leave work behind for the other 16 hours. When it comes to the podcast I co-host, I set aside specific blocks of…

While Pondering FA and Life, I Remain Hopeful

I’ve spent the last six weeks planning and thinking about the things that are important to me. Most of my time and mental energy is focused on personal goals, finances, de:terminence (the nonprofit organization I founded), and habits grounded in exercise. I also do a good amount of planning…

Avoiding Distractions Is Key to a Successful Year

It’s hard to believe we’ve started another year with COVID-19 still in the headlines and on everyone’s mind. I’ve always felt that each year passes faster than expected, but the past two years seem to have flown by even faster than usual. I’ve never kept track, but I don’t usually…

Taking My Time May Allow Me to Get More Done

Last week, my mom and I visited my aunt and uncle, or her sister and brother-in-law. The trip was different from most of the trips I take, and I’m recognizing that my Friedreich’s ataxia (FA) progression is likely to blame. For starters, although I travel fairly often, I don’t usually…

Lessons I’m Learning About My Mental Health

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…

My Independence May Change, but Not Go Away

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…

Putting My Challenges Into Words Lightens the Load

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…

Planning for Tomorrow Is Worth the Effort Today

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…

Finding the Rose Among the Thorns of Rare Disease

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…

Advocacy Does Not Require a Megaphone

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…

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 I’m highly ambitious, but he also knows that I can procrastinate…

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 (almost) 40 is no easy task. I mean, just think about…

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 read them in blogs, on social media, or in other columns…

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 ago. In March, I remember thinking that it would…

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. Many things are heartbreaking and maddening, too, but I feel privileged…

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 a democracy. The United States is neck-deep in a presidential election…

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 a doctor or a test confirmed that hunch.  One…

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 in that direction can be harder than we often admit.

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 neighborhood-specific best practices.  Of all we can and will…

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 one hour to the next.  Speaking of weather, that…

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 many ways of saying it but the message essentially supports one…

Life Is Fragile, So Handle with Care

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…

Easier Doesn’t Always Mean Better

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…