Life with FA is much more optimistic when I am grateful
A week ago, I woke up early on a slightly cloudy, humid Sunday morning. I had butterflies in my stomach as my husband, Dave, and I drove 40 minutes to a fundraiser for my…
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.
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The benefits of summer travel, including for people with FA
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…
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Frustration, so common in life with FA, can hijack my morning routine
This morning I was practicing my pre-getting-out-of-bed routine. I take a pill, do breathing exercises, and meditate for about 10 minutes. I mostly follow this routine, but not always. It’s my way of trying…
How to make life with FA better with effortful fun
About 12 years ago, I went dog mushing with my local disabled sports organization, Northeast Passage. It was a once-in-a-lifetime experience. Those of us who participated have various disabilities, and we got to…
Life with FA means defining and granting myself grace
I am a work in progress, just like everyone else in this world, so I need to give myself grace. The meaning of grace is essential. Several of my columns, including the…
How I cope with envy in life with Friedreich’s ataxia
I have been attending a leadership training for people with rare diseases. The training is fueled by fierce moms trying to pave the way for their children to live in a better world full…
FA makes a good hair day harder, but I revel in them
Last week, I took a slow-motion fall. While transferring from bed to my wheelchair, I tried to reach for something — so I could be quicker — and landed on the floor. I am…
Getting back in the gym reminds me that I never regret a workout
I’m a regular at my gym. Because of transportation issues — a story for another column — I didn’t get there for about three months. Last week was my first week back. So I…
Comparing my current and past selves can be difficult
I was transported to a joyful memory while listening to the radio a few days ago. I’m in the home where I grew up, and it’s sunny and cheerful. My sisters, Lisa and Tricia,…
Past doctor visits made me feel more like a specimen than a person
About 11 years ago, I visited Voyager Therapeutics. The company was, and still is, working to develop a gene therapy for my disease, Friedreich’s ataxia (FA). My dad joined me on that visit,…
Air travel with my service dog is well worth the planning
As you read this, I’ll be on my way home to Massachusetts from a family wedding in Georgia. Right now, I’m getting excited about seeing family I haven’t seen in a while. Because I…
Survivor’s guilt is my companion in living my life with FA
I sometimes feel afraid to open Facebook. I’m curious about how my friends are doing and what they’re up to, so I log in. Beyond many happy updates, however, I also see that some…
