Defining Yourself - a column by Jean Walsh

I help lead teen hangouts for the Friedreich’s Ataxia Research Alliance (FARA), so I hear about the trauma often faced by these strong, emerging adults with Friedreich’s ataxia (FA) and other forms of ataxia. Their stories pull me back to my own diagnosis 44 years ago. As someone…

My husband, Dave, and I have been trying to think of fun, inexpensive things to do this summer. That sounds simple, but my disability from Friedreich’s ataxia (FA) makes it complicated. Sometimes the hardest part of disability is the way it changes ordinary pleasures. We live near the ocean…

I heard a story on the radio a few days ago about wheelchair repair. It was one I could relate to. Because I have Friedreich’s ataxia (FA), I use a wheelchair. Recently, it took more than a month to replace a small, nonessential part of my chair. I…

I spent most of last week providing the state with documentation of two things I already live with every day: my disability and my need for assistance. I am disabled because I have Friedreich’s ataxia (FA). I was doing it for a state program that offers loans with…

I recently finished the book “The Midnight Train” by Matt Haig, and one line at the end stayed with me. The protagonist, speaking to a younger version of himself, urges him to make his wife happy. My immediate response was, “No, no, you can’t make other people happy.” My reaction…

“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought,…

I am entering the joyful, frenetic, and sometimes frustrating fundraising season for my Friedreich’s ataxia (FA) patient organization, the Friedreich’s Ataxia Research Alliance (FARA). Every year, I go into it with big numbers in my head about how much money I am going to bring in. Deep down,…

My husband, Dave, came home the other day to me screaming cuss words in the bathroom. This time, I was yelling at my bladder, which was threatening to explode before I could get to the toilet. Dave strode past the bathroom without greeting me, as he usually does. These very…

I imagine young people with Friedreich’s ataxia (FA) must search the internet to learn more about their diagnosis. Maybe they will come across this column. So this week, I will write to them. When we are young, our friendships are central to our lives. But after I was…

I recently watched a video that showed people dancing, hugging, and laughing together, their sense of community shining through. The video, which was shared on Friedreich’s Ataxia News‘ YouTube account from April’s Annual Ataxia Conference, filled me with both envy and pride. When I was diagnosed with…