Defining Yourself - a column by Jean Walsh

I recently read a column by my colleague Ben Hofmeister for Multiple Sclerosis News Today. He wrote that, for him, disability pride is about celebrating the advocates who came before us and who made the Americans with Disabilities Act possible. He also made the point that…

I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a vast understatement. For example, when I was 9 months old, I could walk. I know I…

My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not curable, disorder in which one or more of the fingers is permanently contracted. People with DC…

I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to replace it before it gets to that point. If you want to save for yourself or…

Walking my service dog, Wendy, is fun, relaxing, and, oddly, one of the things I do daily that makes me feel independent. Yesterday, the sun was shining down on us even as we inhaled the warm, musty smell of the previous night’s rain evaporating. (I think Wendy smelled the same…

I just finished reading “The Beauty of Dusk” by Frank Bruni. It is largely a memoir of his experience having a stroke that caused partial blindness in one eye. He must also contend with his other eye possibly being affected. In trying to figure out how best to…

Recently I had to purchase shoes. I’ve always loved shoes and clothing, and I feel creative when I select an outfit that reflects who I am. Also, I simply feel better when wearing an outfit that feels like me. Shoes are a big part of that. I remember breaking…

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…

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…