Choosing hope even after Friedreich’s ataxia dictates logistics

When I was diagnosed with Friedreich’s ataxia (FA) in 2013, my family and I had never heard of the disease. So we had a lot to learn about this new, lifelong character that was now a part of our story.

My father, the kindest, wisest, and most generous and helpful person I know, described the few months of learning about FA as “drinking through a fire hose.” Learning how my life would be dictated by the limiting and widespread progression of FA was an unforeseen and daunting task. Worst of all, the onslaught of medical information didn’t offer much hope to cling to.

To sum it up in a massive understatement, I was incredibly overwhelmed.

I lived like that for a while. I felt like a timer had been set on my life, and I had to accomplish certain tasks within a window of time.

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I now had a general idea of what my future held, medically speaking. I knew that a large part of it would involve adapting to a life dependent on mobility aids such as walkers and wheelchairs, as well as everything else involved, like grab rails, ramps, and limitations.

I now know that I was both wise and naive in this thought process.

For example, I thought I needed to check the box of taking my children to Disney World before I started using mobility aids. Now, having done Disney at all stages of my disease progression — walking unassisted, using a walker, using a manual transport wheelchair, using an electric mobility scooter, and using an electric wheelchair — I can confidently say that it is a magical time no matter what.

Another example is the beach. I am fortunate that my husband can carry me to and from my wheelchair and the ocean or beach chair, so I still get to experience sand in my toes. But I desperately desire the ability to walk along the shore hunting for seashells or to wade out in the water and hop over waves with my children. As predicted, FA has a majority say in how I experience the beach.

Upon learning about my medical destiny with FA, I was fairly certain that becoming dependent on a walker would signal the end of many chapters in my life. This transition happened in 2018. It certainly impacted how many of my chapters unfolded logistically, but I realized that my life was still so rich and full with the walker that the things it ended, such as hiking, running, wearing fun shoes, and navigating stairs, didn’t feel like such impactful losses.

Having gone through that adaptation and lifestyle change, I felt a bit more prepared to embrace my wheelchair full time in 2025. While this change has been more involved (financially, and with renovations and lifestyle demands), I can confidently say that my life is very full.

I am still able to attend most of the things that matter to me. I can still do most of what I want to do as a mom, wife, and friend, as well as what I need to do. Figuring out how to accomplish tasks logistically and safely requires patience, bravery, grace, humor, and determination, as well as more humility and teamwork than I had anticipated. But it is worth the effort.

If FA is now a main character in the story of your life, please remember that it doesn’t mean FA is the author of your story. There are so many ways to keep making life go the way you want it to go. You can always choose hope.

“’For I know the plans I have for you,’ says the Lord. ‘They are plans for good and not for disaster, to give you a future and a hope.’” — Jeremiah 29:11

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.