Even after 42 years, I still remember the day a neurologist diagnosed me with Friedreich’s ataxia (FA). He told my parents and me that I had about 16 years to live and six years before I’d start using a wheelchair. Then he had me leave his office and told…
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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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…
Mother’s Day is a tough one for me. My husband, Dave, and I lost a much loved, wanted, and planned-for baby in 1999. My mom died in 2016, and Dave’s mom died in early 2023. So we decided to honor Mother’s Day this year by going to Portland, Maine.
My husband, Dave, and I love to watch the TV show “Top Chef,” which we stream on Peacock on Friday nights. It’s a little treat to end the work week. We’re usually eating dinner as we watch — not the most mindful practice, but enjoyable. Our…
Almost every morning I wake up intending to eat well. Sometimes I do eat healthily, sometimes not. This sunny May morning I plan to make myself a berry smoothie with lots of healthy stuff in there like flaxseed and Greek yogurt. A healthy smoothie is one of my go-tos in…
I was struggling to transfer unassisted from the couch into my wheelchair when I slowly fell on the floor. I worried that my osteoporosis-weakened bones had broken, even though I wasn’t in pain. Recent experience had taught me that broken bones can be very painful: I’d broken both my…
“He was in a jam/ He’s in a giant clam!/ Rock, rock, rock lobster!/ Down, down …” The B-52s were blaring from the megaspeakers at the crammed party. I was doing my best to join in the dancing madness. I felt I might fall, but also felt…
It was 6 a.m. I was still in bed when my van alarm started going off. Such alarms make me tense, particularly first thing in the morning. My husband, Dave, was up and ran outside to turn it off. In my mind’s eye, I saw him running outside with his…
My mind was whirring at what felt like 1,000 miles an hour. I had a paper due, a doctor visit out of state to plan, a dog to take to the vet, and more. I was swamped. All the thoughts swirling through my head were overwhelming me, and not one…
My dad — a vital yet balding older man with a gray beard and merry blue eyes — pedaled alongside me. We were participating in a rideATAXIA event, one of the main fundraisers for the Friedreich’s Ataxia Research Alliance (FARA). He rode his upright bike, and I was…
I recently complained to my husband, Dave, that taking care of my health is all I ever do. It isn’t, but that’s how I felt at that moment. Dave replied with some version of “I imagine it must be hard, but you’re worth it.” Of course, most of me agrees,…
The disease I have, Friedreich’s ataxia (FA), causes loss of mobility among other things, which prompted me to get a sweet service dog named Wendy. Last December, I took Wendy to the vet for her annual checkup. Like all of her previous appointments, Wendy kissed the vet, got…
The other day I decided to try watercolor painting again. That may sound like an extremely frustrating activity for someone who signs their name like a 5-year-old. No offense to 5-year-olds. Poor motor skills are one of the symptoms of the disease I have, Friedreich’s ataxia (FA). I’ve always…
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