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…
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 celebrated my birthday. I love a party, so I love this occasion. It’s a reason to be with friends and family and eat cake. It is one of my happy places. My birthday is also a reminder of my journey with Friedreich’s ataxia (FA).
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…
A while ago, a friend of mine with Friedreich’s ataxia (FA), a disease I also have, told me that she only plans one activity a day. That sounded like sage advice, but it was advice I haven’t been following in my own life. Last week, for example, I scheduled…
I recently returned from a fun vacation with my husband, Dave, and two friends at the Grand Canyon and Las Vegas. We saw a lot, ate a lot, and laughed a lot. At this moment, my quality of life (QoL) feels great. But that’s not the case all the time.
Imagine standing on top of Mount Everest screaming “Help!,” but the wind is so fierce that your words blow back and no one hears you. Could people do anything if they did? That’s what being diagnosed with my rare disease, Friedreich’s ataxia (FA), felt like. My parents and…
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