Facing another loss after deciding it’s time to stop driving

While walking with my service dog, Wendy, I reflected on a question that’s always with me: Who am I? Even at 63, with more of my life behind me than ahead, this question still arises.

I am many things: daughter, sister, wife, aunt, friend, dog mom, rare disease patient, rare disease advocate, person with a disability, and more. Most of all, I am a human who is warmed by the same sun that shines on over 8 billion people.

I was prompted to reflect on who I am now after recently deciding to stop driving. We needed a new wheelchair-accessible van, which influenced this choice. I have Friedreich’s ataxia (FA), which, among its many symptoms, causes me to lose coordination each day. I used to drive with hand controls, and although I still can, I’ve decided to stop.

Recommended Reading

October 30, 2025 Columns by Kendall Harvey

Children have helped me view my accessible van positively

Because of FA, the day will soon come when I can no longer drive safely. Those of you familiar with the cost of an accessible van know how expensive it is. So instead of buying a new van that might not work for me in, say, five years or so, I will save some money for other things I love.

For people who have the privilege of aging, including me, this day comes for all of us. But when you have a degenerative disease like FA, this day comes more quickly than it does for others.

Today, I acknowledge yet another loss caused by FA. I have less freedom now that I no longer drive, and I feel both angry and sad. Loss after loss has marked my 40-plus-year journey with FA. Being a driver was part of my identity, and now my sense of self has changed once again because of FA.

I have agency

I am sad and angry, but not powerless. We live in a small city, so I can access free regional transportation for wheelchair users and others with disabilities. My application for it is underway.

It’ll be a great thing to have. However, it’s not a taxi or an Uber; I’ll need to schedule it. I can’t just put Wendy in the car on a whim and take her to the dog park. My husband and I are adjusting our budget so I can set aside money for taking trips outside the free program’s area, like to Boston, the closest major city.

I am doing everything I can to keep defining myself as someone who is as independent as possible. I need to let go of being a driver, but I can still go places accompanied only by a service dog.

I don’t like not driving my own van, but it’s the best way for me to enjoy the life I have with FA. The money we’ll save by not buying a new van will enable us to do fun things, and I can’t wait to figure out what they’ll be.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.