Columns

Recently, my sister Lisa asked me, “Why do you always write your column about sad things? You’re a happy person.” I had to think about that. I think part of the answer is that I write about Friedreich’s ataxia (FA), the biggest and most ever-present challenge in my life.

Sometimes when I think my own little victory is simply about existing, I imagine myself answering questions that my 14-year-old self would’ve loved to have asked if he could see me now. I’m talking about the kid who was just beginning to understand Friedreich’s ataxia (FA) after reading about…

As I write this, noise fills my house: the nail gun, the power saw, and the construction workers’ radio. I can feel my hard-earned routine for living with Friedreich’s ataxia (FA) slipping out of reach. I keep reminding myself that each bang and disruption brings us closer to an…

My family, including my parents, recently took a grand vacation. We started in West Yellowstone in Montana, where we watched a juvenile black bear hunt a squirrel, swim across a river, dig for grubs in a downed tree, and relax in the sun. We also saw waterfalls, canyons, thermal pools,…

A couple of weekends ago, someone said something I hear all too often: “You are so lucky to be able to bring your dog with you.” I know they meant it kindly, but my first thought was, “Lucky?” Wendy is not just my dog. She is my service dog.

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…

I had to bite my lip to keep from screaming as I watched my 14-year-old daughter, Amelia, who has Friedreich’s ataxia (FA), roll onto the basketball court. I’m constantly navigating a fine line between being a supportive mom and an embarrassing parent. Amelia is a teenager, after all. Her…

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…

When you have school-age kids, summer can be quite an adventure. Establishing sustainable and achievable routines that will serve me and my Friedreich’s ataxia (FA) is a priority when summer arrives to my home each year. Since we no longer have homework or alarm clocks to mind for a…

For most of my life with Friedreich’s ataxia (FA), hope felt distant. When I was diagnosed back in 1994, information about this weirdly named disease was difficult to find. The idea of treatment existed mostly in the language of “someday,” and even that felt optimistic. Many of us in…

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…