Why I’ve made plans to donate my body to science after I die
My husband, Dave, and I had a tough year in 2023, when Dave lost both parents. Our grief has lessened, but we’re still working through it. At times our ability to grieve was blocked…
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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Getting diagnosed with FA made me afraid of wheelchair users
When I was diagnosed with Friedreich’s ataxia (FA) in 1981, I was a sophomore in college. I lived in a newly renovated dorm that was wheelchair accessible, and, naturally, a woman who used…
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When losing our abilities to FA, the feeling of grief is real
Unsurprisingly, after steering my wheelchair into a wall for the fifth time that day, I found myself amid a temper tantrum. For me, these usually involve yelling curse words at Friedreich’s ataxia (FA),…
The challenges of managing FA and using a wheelchair in the winter
Today is another brutally cold January day here in Massachusetts. Both my Friedreich’s ataxia (FA) and my wheelchair use mean I don’t spend as much time outside as I’d like. Why? FA limits…
Thanking my dad for the best advice I ever got
Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed. For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to…
Whether you have or don’t have Friedreich’s ataxia, you are relevant
“The Real Housewives of Beverly Hills” is one of my pleasures. I’m intentionally not writing “guilty pleasure” because I don’t feel guilty for watching the show, even though it’s silly and does…
Falling in the shower is a daily worry in my life with FA
Every time I shower, I wrestle with the competing emotions of being a little afraid of a fall and wanting to relax into that delicious feeling of hot water beating on my back. A…
Being content in the face of FA and other adversity
I recently saw a short YouTube video extolling the importance of accepting that life is bittersweet. In this acceptance, we can become content. If you’ve been reading my columns, you’ve heard me say…
How I respond when people ask, ‘How are you doing?’
Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The holiday season is upon…
The benefits of spending time in nature as someone with FA
A couple weeks ago, I wrote that I was planting bulbs in my garden. I’m still doing that because I always buy too many. They’re just too beautiful for me to pass up! OK,…
Being intentional about the stories I tell myself helps me navigate FA
I’ve been thinking a lot about the stories I tell myself about my life, as they can make a big difference in how I feel. Telling myself a productive story has especially helped me…
Reflections on my power chair now that I can’t use it
Last week, I had a bump in navigating my Friedreich’s ataxia (FA) road. The wheelchair I use because of my FA symptoms went offline. I use a Whill C2 wheelchair, and I…
