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.
Deciding when to disclose certain aspects of my life, and to whom, can sometimes be challenging. Although I’ve got a handful of things I don’t necessarily advertise, my living with Friedreich’s ataxia (FA) can be a bit glaring when I meet people for the first time. When I’m…
I can’t put my finger on why, but lately, I’ve been thinking about how fragile and short life is. More than ever, I feel challenged to make the most of my time on earth. I’m sure everybody has a similar realization at some point. Whether we feel close to death…
Much like fingerprints, many experiences are similar at a glance but unique upon closer examination. This is especially true in the rare disease community. Although our conditions are very different, we have many things in common. This has been on my mind recently due to an unexpected source. My friend…
I feel fortunate that I still enjoy a lot of independence and mobility, despite Friedreich’s ataxia (FA). My progression has been slow and mild compared with many folks with the disease. I’m 42, my heart is healthy, and I still walk. Although I started using a rollator a few…
Because of my mom’s poor health, I’ve been spending more time lately talking with my family. I recently spent a few days with one of my brothers helping Mom settle back into her house after nearly eight weeks in the hospital. My brother’s kids are regular topics of our…
I’ve heard it on TV and in movies and read it all the time, a seemingly universal message to caregivers: “Remember to take care of yourself.” Although I’ve never disagreed with that advice and I’m sure I’ve said those words to others, such guidance is easy to forget or ignore…
Throughout the last decade of volunteering and serving the rare disease community, I’ve often heard health-related companies and organizations reference the “patient voice.” This refers to the value of a patient’s experience and perspective when developing something meant to serve them. For instance, if you want to build a home…
A common question I ask people when trying to get to know them is, “What do you like to do for fun?” I consider this a safe, neutral question because people can define fun however they want. Plus, there are varying degrees of fun. For instance, going to the movies…
I’ve always valued people’s advice, especially when I ask for it. However, nothing beats living and learning. Due to the progressive nature of Friedreich’s ataxia (FA), I’m constantly learning. As I age and my FA symptoms worsen or become more noticeable, I’ve realized that just as I…
I’ve recently been asked a couple questions that have stayed on my mind. As someone with Friedreich’s ataxia (FA), I receive many questions regarding my mobility device and overall disability. I’m often asked, “Why do you use a walker?” And the politically incorrect way of posing the same question,…
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, a new one has taken center stage lately. This season on…
It may be old news by now, but for those of us living with Friedreich’s ataxia (FA), there is a particular buzz about the very first treatment for FA approved by the U.S. Food and Drug Administration, Skyclarys, formerly known as omaveloxolone. I don’t believe the excitement…
Before I was diagnosed with Friedreich’s ataxia (FA), I knew little about disabilities and nothing about rare diseases. I grew up seeing an accessible parking placard in every car my dad owned, but his disability was due to a gunshot wound he sustained while on the front lines…
I learned that I had Friedreich’s ataxia (FA) just a few weeks before I turned 25. The news came in a phone call, but without any description or explanation; instead, the diagnosing doctor said they’d scheduled me with a geneticist who would explain everything in more detail. The doctor on…
Occasionally, a random and seemingly minuscule thought sticks with me and eventually consumes my mind. I’ve never thought of myself as intelligent, but I have always been hopeful that I am getting wiser as I age. Some of that wisdom reveals that not everything is black or white, up…
I’m not a fan of cold weather at all. Even when I could manage my legs with skis or a snowboard attached, I was never interested in being out in the snow. Of course, I enjoy the views of white-tipped trees and mountains, but I find they’re most enjoyable from…
One of the few lines I, and most others, remember from the movie “Forrest Gump” is, “Life was like a box of chocolates. You never know what you’re gonna get.” It often comes to mind when Christmas is approaching. Of course, the film doesn’t typically make any…
With Thanksgiving just days away, I’ve been participating in many exercises in which I’ve had to mention things I’m thankful for. This is a familiar routine this time of year. As I’ve aged and Friedreich’s ataxia (FA) has progressed, however, I’ve noticed that the list of things I’m…
Thanksgiving is an important holiday in the U.S., and as it’s just over a week away, it’s sparking many ideas for writing topics. (If you read my last column, you know I appreciate all the help I can get with content ideas.) November feels like the start of the…
I rarely have the foresight to make a note about something I want to write about. Instead, I often sit and stare at a blank document. While sitting and staring, I replay the experiences I’ve had over recent weeks, trying to identify something interesting to dig into. Although I never…
Not long ago, I had the pleasure of recording a Zoom session with fellow Friedreich’s Ataxia News columnist Kendall Harvey. Kendall wrote a column that inspired my podcast co-host, Kyle Bryant, and me to dig a little deeper and share Kendall’s perspective with our listeners. Kendall, Kyle, and…
Advocacy can be a tricky, give-and-take process. So often those of us living with disabilities are faced with mixed emotions as we go about our daily activities. On the one hand, we’re told to be grateful for our remaining abilities and celebrated for making the most of our circumstances. On…
Tensions are always high and opinions seem to be loudest whenever it’s election season. Of course, it’s best to avoid the topic of politics at holiday gatherings, meet-and-greets, and in this column. However, given all the recent political ads and an experience I had the other day, I’ve…
I recently returned to an old, bad habit that can take up too much of my time if I’m not careful. I enjoy game nights with friends and family, but those nights are few and far between. So instead, I play Risk on my phone when I have some…
Today at work, my small team visited two of our stores and facilitated friendly competitions in the grocery sport of bagging. July is the beginning of our monthslong pursuit of identifying the best bagger of our company, Nugget Markets, so we can send them to represent us at the national…
I thoroughly enjoy the unexpected twists and turns and the adrenaline rush of roller-coaster rides. I’ve loved roller coasters since I was old and tall enough to ride them. My first experience on one, however, before I was tall enough to technically be allowed to ride it, terrified me. It…
I can’t exactly put my finger on why, but for a long time, I thought success had to do with how many friends I had. How many of them called me by name and went out of their way to say hello at social gatherings was important to me. But…
The progressive nature of Friedreich’s ataxia (FA) has been a common topic for me lately. From talking with a friend over dinner about changes I experience to discussing on my podcast the many ways in which FA affects various people, I realize that this theme will…
I met a friend for dinner recently, and we talked about the changes I’ve observed in my capabilities in the last several months. Not only did we have a pleasant conversation, but in celebration of Cinco de Mayo, we also enjoyed a margarita with dinner. One question he asked me…
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…
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?…
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…
A few years back, I wrote a letter to my mom describing my perspective on life and myself. While there was no urgent need to write such a letter, I had a deep desire to affirm for her, as her youngest child, that I have accepted the challenges I’ve…
I have several friends I’m still actively connected with today who have known me for years. Some knew me when I worked in church ministry, while others knew me as a gas station attendant. A few have been in my life since college, while most I’ve met within the last…
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…
In some ways, I’m probably late to the party. Like many of my friends and fellow columnists at Friedreich’s Ataxia News, adapting to change has been part of living with a progressive disease. I’ve read about Matt Lafleur’s tough journeys on his trike…
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…
This time of year is always chaotic yet fun for me. I enjoy good sweater weather, hot cocoa, and the many Christmas lights I see while driving around town. The chaos comes in many different forms, such as people who aren’t used to driving in the rain, busier days…
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…
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…
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