Last in a series. Read part one. After a traumatic whirlwind of a day, a sleepless night, and surgery to repair my broken hip, I woke up in the postoperative room. That’s always disorienting because you have no clue how much time has passed, how the surgery went, what…
Columns
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…
Everywhere I look, I see advertisements on billboards, computer monitors, and even at the pump telling me what I should buy and how I’m missing out on having certain things. We are bombarded by it. We don’t hear as much about personal finance, however. Discussing that often leaves me feeling…
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.”…
First in a series. On Sept. 6, 2025, my worst fear happened. It felt inevitable. I am 100% dependent on mobility aids due to poor balance and coordination with Friedreich’s ataxia (FA). Around the house, I use a rollator walker, but when I’m out and about, I…
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…
As I heard the words come out of my mouth, I knew I sounded crazy. Yet there I was, pitching the idea to my husband: I wanted us to embark on a 16-hour journey to a place so remote that there’d be no running water or electricity. And we were…
I intended to publish a column in August that brimmed with hope and included a passage by my friend and fellow columnist Elizabeth Hamilton. We wrote about vatiquinone, which was up for approval with the U.S. Food and Drug Administration (FDA). It had the potential to become the…
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…
When I was 25 years old, on Aug. 19, 2013, my life forever changed. Together with my parents and husband, I got the answer we’d long sought about why my balance was progressively, noticeably, and inexplicably getting worse, despite being young, active, and otherwise healthy. A neurologist provided a…
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…
Recent Posts
- Yet another fall results in nose reconstruction surgery, part 1
- 5 Oxford research projects are aiming for new Friedreich’s ataxia treatments
- With PRV’s reauthorization, the rare disease community gets a rare win
- Finding grace for the FA caregiver during a long winter
- Finding meaning amid the darkness within