Defining Yourself - a column by Jean Walsh

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…

A few days ago, I looked at vacation pictures from our trip to Hawaii in 2007. It was a wonderful vacation — not perfect, but fun and relaxing. We watched postcard-perfect sunsets over the ocean, framed by palm trees, glowing in pinks and oranges. We relaxed on the beach, swam…

This morning, like many mornings before it, I pulled out gym clothes as my all-day outfit. Gym clothes are comfortable and easy to put on. I work out most days, so gym clothes are a reasonable choice. This summer, I’m going for T-shirts and lightweight joggers. To me, that’s boring.

It’s summertime, the season for travel. There’s so much fun at every stage: the planning, the doing, and the reminiscing. I love to travel, though I have Friedreich’s ataxia (FA), which means I need extra planning and consideration when I do it. Symptoms of FA include poor coordination…