Defining Yourself - a column by Jean Walsh

My husband, Dave, and I worried about the possibility of rain on a recent cool, cloudy October Sunday. He was getting his bike ready for the 26-mile rideATAXIA’s Philly ride. If it had rained, it would have been slippery for a touring bike, like the one Dave and many of…

Last Monday, I decided not to listen to political podcasts. I get FOMO (“fear of missing out”) when it comes to political news, so I keep listening to it, even though it doesn’t nourish me. In fact, things I have little or no control over tend to upset me. I…

I recently told my husband, Dave, a silly dad joke, but I had to repeat the punchline three times. By that point, it wasn’t even funny — if it ever was. Dave was simply trying to understand me, but I was frustrated that I had to put so much effort…

I’ve been reading “The Book of Delights” by Ross Gay. In it, he describes the small, everyday experiences that bring him joy. I am trying to follow that example, but, unlike Gay, I don’t write down my delights. With Friedreich’s ataxia (FA), the physical act of writing is extremely…

Today, as I do most days, I woke up still tired. My sleep last night wasn’t great, but that’s not why I’m tired. I’m exhausted because I have Friedreich’s ataxia (FA). I tell myself I’m tired, and then the self-help book reader in me says, “Tell yourself you’re energized.”…

During the final hours of the 2019 Friedreich’s Ataxia Symposium in Pennsylvania, the Friedreich’s Ataxia Research Alliance announced that the pharmaceutical company Reata had achieved statistically significant positive results in its Phase 2 trial of omaveloxolone (also known as “omav” at the time and now sold under the brand…

Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its more serious symptoms is cardiomyopathy. Monitoring my heart is crucial to detecting any changes early and…

If you’ve seen me fall or heard me talk about it, the first thing I usually say is “I’m OK.” I’ve even said that when I had a broken shoulder, when I clearly was not fine. Since no one could see my broken shoulder, I hid the pain. When I…

Last Monday, my husband, Dave, and I were on the last leg of our journey home from vacation in the Shenandoah Valley. The GPS interrupted our Audible book and said, “Take exit 90 toward the Massachusetts Tournpike.” That’s not a typo — the GPS mispronounced turnpike. Hearing the mistake, we…

The other day I was listening to a podcast. (I think I’m addicted to podcasts.) The interviewee had post-traumatic stress disorder (PTSD), though she preferred that it be called post-traumatic stress injury (PTSI) because she felt she was having a normal reaction to a horrendous trauma. During my years with…