No Good Excuse — Sean Baumstark

Living with a progressive condition like Friedreich’s ataxia (FA) means consistency can be hard to find. I’m sure you can imagine the ups and downs I deal with concerning my health. FA’s progression forces me to adjust my routines weekly and sometimes even daily. I’m blessed to still be…

I always joke a lot about getting older. Although there might be some perks to remaining in my 20s forever, I’ve never been afraid to grow old. I do fear, however, that some of my goals might be cut short by Friedreich’s ataxia (FA). I’ve grown comfortable with the…

I’ve heard it a thousand times: “Experience is the greatest teacher.” And although there’s a lot of truth to that, I’m not sure it covers every situation. I, for instance, often repeat frustrating or disappointing experiences and wonder how I let myself continue the behavior that led me there. In…

I can’t put my finger on exactly what triggered my recent musings about responsibility, but apparently, we can’t escape our thoughts. Trust me, I’ve tried. My last column focused on the heightened sense of responsibility I’ve learned to accept as a disabled individual. Since then, the topic has come…

I was recently driving in an unfamiliar city one night after work. As I exited the freeway, I noticed that the headlights behind me abruptly entered my lane and were right on the rear of my car. After realizing the other vehicle wasn’t law enforcement, I wondered if I’d inadvertently…

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…