Finding joy in cultivating resilience with Friedreich’s ataxia

Lately, it seems like my journey with Friedreich’s ataxia (FA) has been a major focus of my life. Between sustaining three fractures in nine months, meeting new people, and refusing to let my symptoms dictate how I spend my time, I’ve had to accept and adapt to many things not going my way.

I was diagnosed with FA in 2013, so I have a lot of experience adjusting my expectations. I started using a rollator walker in 2018 and a wheelchair full time in 2025, so I’ve grown accustomed to having a visible disability.

I’m used to strangers telling me about the time they had to use a wheelchair when they broke their leg or about their aunt who battles a different chronic condition. I’m used to the pity and curiosity that fill the eyes of passersby. After more than a year as a substitute teacher for kindergarteners through eighth graders, I’m used to explaining my disability to a variety of age groups and comprehension levels. In short, I’m used to living with FA.

So how do I focus on joy amid the chaotic hardship? It’s quite a process, but after years of practice, it’s become second nature.

Recommended Reading

Sept. 8, 2026 News by Steve Bryson, PhD

Protein modification offers potential target for Friedreich’s ataxia

How I find joy in life with FA

When something FA-related threatens to define my day or wreck my mood, I take a deep breath and think. Does this problem have a practical solution?

For instance, I often face mobility obstacles that make me ask, “How can I safely do this?” Then I look for an alternative path, ask for help, or politely explain to someone around me that the task at hand is beyond my ability and ask that they fill in for me.

During an unpleasant or inconvenient encounter where the main topic is my disability, I take a deep breath and ask myself, “How can I respond with grace and wisdom to help improve this person’s future interactions with disabled people?” I smile and describe how FA has affected my abilities and what that person can do to be more aware of other people’s needs. For example, I’ll explain why I need extra space beside my van or a rail to hold on to when using the restroom. I try my best to remain calm and polite so as not to create a negative impression of disabled people.

When I’m dealing with a problematic symptom, I’ll question whether there’s a medication or supplement I can add to my regimen or an adaptation I can make to lessen the symptom’s impact on my life.

In other situations, I’ll use the “five-minute rule” to decide my course of action. I previously explained it like this:

“Before pointing out an aspect of someone’s appearance, ask yourself if it’s something they can fix in five minutes or less. For example, if your buddy has food stuck in their teeth, ketchup on their shirt, jeans tucked into their sock, or a messy ponytail that needs to be redone, those are issues you can gently point out to them. But if it’s something that can’t be addressed quickly, such as their height, a stutter, an allergy, or crooked teeth, it’s best not to say anything at all, especially in a group setting.”

FA is not something I can change in five minutes, so how can I make the best of it? Sometimes the questions above lead me to an answer. If there isn’t an immediate solution within my power, FA threatens to make me feel small and incapable. But having lived under the crushing weight of that reality, I can say it’s no way to lead a healthy or productive life.

Instead, I’ll table that issue for later discussion with my doctor, friends, family, or other authorities, who can help me reach a conclusion. In the meantime, I focus on things that make me smile rather than those that make me sad, frustrated, or angry.

“And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. Keep putting into practice all you learned and received from me — everything you heard from me and saw me doing. Then the God of peace will be with you.” — Philippians 4:8-9

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.