Each year, the daughter of one of my friends hosts an annual “Friendsgiving” event the day after Thanksgiving. I’ve never gone because I haven’t met her daughter, but my friend assures me it’s really fun. I love the idea because it reminds me how intentional people must be to build…
Defining Yourself — Jean Walsh
Jean Walsh hails from Massachusetts. You will find a mental health perspective in her writing, reflecting her two mental health graduate degrees. She has years of work experience, the most pertinent being her experience as a grant writer. Jean was diagnosed with Friedreich’s ataxia (FA) when she was 19, and has been an avid FA volunteer since. She is 40 years into her journey with FA and so has a lot of experience to share with her shared FA, rare, and chronic disease communities.
Featured Post
A few days ago, I heard a scientist talk about the randomness of being born. For example, what are the chances of your parents — and all of their ancestors — meeting? Then there’s the sperm that wins the race against millions of others to the egg. It all seems…
While walking with my service dog, Wendy, I reflected on a question that’s always with me: Who am I? Even at 63, with more of my life behind me than ahead, this question still arises. I am many things: daughter, sister, wife, aunt, friend, dog mom, rare disease patient, rare…
I spent most of my day last Saturday picking things up, or rather, having my service dog, Wendy, pick things up. Exploding head emoji. Even though sweet Wendy always wags her tail and is happy to pick up an object when we fail to transfer it from her to me,…
Last Monday morning, I sat up in bed to take my thyroid pill. But I accidentally dumped the pills into the covers. I managed to scoop most of them back into the bottle and popped my pill into my mouth. I figured I’d find the stray pills when I got…
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…
Explore more columns
Discussion
Discussion
Discussion