I’ve heard it on TV and in movies and read it all the time, a seemingly universal message to caregivers: “Remember to take care of yourself.” Although I’ve never disagreed with that advice and I’m sure I’ve said those words to others, such guidance is easy to forget or ignore…
“What do you wish to achieve in this life?” my friend Tony asked. I sat down for a moment to rest. It was a loaded question, one I hadn’t been asked in years. I had just earned my graduate degree in biblical studies, and at 29 years old, I imagined…
I’m amazed at how many lessons my daughter teaches me just by being herself. We were at the base of Sleeping Bear Dunes in Michigan, an eight-hour drive from our home in Ohio. It was hot out, and the sun’s reflection on the sand made it even hotter. Because…
When I was young and, frankly, naive, I had a lot of misconceptions about people with disabilities. I thought that the only people who used walkers were senior citizens or those recovering from leg injuries. I also thought that only people with nonfunctioning legs used wheelchairs and that they sat…
The word “enduring” has been on my mind a lot lately. I was thinking about that concept as I saw friends with Friedreich’s ataxia (FA) post on social media about the approval of Skyclarys (omaveloxolone), the first-ever treatment for our disorder. Even though it’s worth celebrating…
The weight I often feel as a parent can be crushing. The level of worry, feelings of inadequacy, sense of guilt, and overwhelming fear can easily hijack my mind. I know I’m not alone in having these feelings, and that it isn’t solely because my youngest daughter, Amelia, 11, has…
After I transferred from my scooter onto the desk chair, I swiveled to face the tablet screen, pausing a moment to regain my balance and composure. I carefully grasped the tool in my hand, securing it in my fingers and placing it on the blank page. “Now watch this!” I…
“Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed.” — often attributed to G.K. Chesterton My daughter Amelia, who has Friedreich’s ataxia (FA), has always been afraid of the dark. The bedtime requests to check under the…
As I approach the 10th anniversary of my Friedreich’s ataxia (FA) diagnosis, I’m struck by an explosion of complicated and contradictory feelings. In August 2013, when I learned that the poor balance, fatigue, and slower speech I’d been experiencing were caused by FA, my future terrified me.
The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me. When this drug was approved Feb. 28, I celebrated in a column posted minutes after the announcement. A few…
Throughout the last decade of volunteering and serving the rare disease community, I’ve often heard health-related companies and organizations reference the “patient voice.” This refers to the value of a patient’s experience and perspective when developing something meant to serve them. For instance, if you want to build a home…
Amelia went to summer camp! And I’m talking overnight, in-the-woods camp. My 11-year-old daughter, who has Friedreich’s ataxia (FA), had the opportunity to be away from home, get dirty, make new friends, and learn camp songs — all without the watchful and prying eyes of her mother. It started…
Get regular updates to your inbox.