Looking ahead after a dozen years with Friedreich’s ataxia

When I was 25 years old, on Aug. 19, 2013, my life forever changed. Together with my parents and husband, I got the answer we’d long sought about why my balance was progressively, noticeably, and inexplicably getting worse, despite being young, active, and otherwise healthy.

A neurologist provided a simple explanation that would forever change the course of my life: I have Friedreich’s ataxia (FA).

Having never heard of FA, let alone expected that I harbored anything like it in my DNA, it’s an understatement to say I was overwhelmed as I tried to wrap my head around what a life with FA could and would look like.

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Now, a little over a dozen years since that day, the overwhelmed feeling hasn’t really left. Life with the physical disabilities of FA is still overwhelming, but other large emotions and needs have forced me to keep going.

For example, there’s the constant need to adapt. That’s something I have to do since I choose to keep moving forward in life. My lifestyle and my FA need to coexist, even work together. For example, I needed to find a way to keep walking without falling, so I acquired a walker. I needed to find a way to bathe and ready myself for the day, so I outfitted my bathroom with seats and rails.

True to that life with FA, I must adapt some more because my previous adaptations are no longer working. My FA has progressed, and therefore, my accommodations must progress as well.

I’m in the process of transitioning to full-time wheelchair use, which demands far more adaptation than I’d anticipated. I not only have to change my mindset, but also my house, my transportation, my body, my routines, my expectations, my activities, and so much more.

Even as I’m overwhelmed, I have to provide accommodations for another emotion: hope. I still feel so much hope, the hope that each day will contain more joy than sadness, more success than failure, more growth than setback, more laughter than tears, more love than hate, and more wins than losses — all despite FA.

And even as I’m overwhelmed, I must also provide accommodations for my desire to keep enjoying my life.

I don’t want to become paralyzed by my disease progression. I want to safely address FA so that I can keep living my life, just like everyone else. The way I get through my day looks very different from that of others without my condition, but different isn’t necessarily a bad thing. It’s just different!

After living with the overwhelming reality of FA for a little over 12 years now, I can confidently say that it’s possible to not only function, but to thrive — even with all the feeling surrounding this disease. It just takes grit and grace, plus a healthy dose of support, humor, hope, and rest.

“I have told you these things so you may have peace in Me. In the world you will have much trouble. But take hope! I have power over the world!” — John 16:33 (New Life Version)

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.