Finding reasons to be happy with Friedreich’s ataxia
My life is full of hard things — but it's full of joy and beauty, too
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I have a framed anonymous saying beside my bed that reads, “There are so many beautiful reasons to be happy.” I see it at least twice a day, and it makes me think about the things in my life I take for granted, dismiss as common, or that can be easily overshadowed by hardship.
From most perspectives, a life with Friedreich’s ataxia (FA) looks full of hard things. Between the physical limitations, fatigue, necessary doctor’s assistance, constant adaptations, required humility, demanded acceptance of reality, hope to continue moving forward, and a steady stream of judgment and concern from strangers and dear ones, managing FA can feel like a full-time job.
However, after a while, I noticed I kind of got used to it, both the good and the bad. On days when everything is business as usual and I’m just going through the motions, or when I’m in my head and feeling down or overwhelmed by FA, this saying helps me pause and find a reason to be happy.
Approaching life intentionally
For instance, I had built the idea of a wheelchair up in my mind as a major life-altering milestone. I’ve now been using one for about 15 months and am pretty used to it. I’ve stopped noticing it unless it poses a problem or comes up in conversation.
There are plenty of moments throughout the day when I internally grumble about the logistics of navigating the world in a wheelchair, but those are background noise to me at this point. Those small, routine, less-than-positive thoughts are usually overshadowed whenever I venture out beyond the walls of my house.
I still get comments about my wheelchair almost weekly. People note how sleek or intuitive it looks; children in the classes I substitute teach in inquire about all the features and marvel at the answers; people comment on how impressed they are by my attitude, and so much more.
In those moments, I find fulfillment in using my platform for good. I have the opportunity to educate, inspire, and encourage others, and to normalize disabilities. In short, living my life with FA is a reason to be happy in that moment.
So, yes, my life is full. It’s full of hard things — both FA-related issues and things that everyone has to deal with. But it is also full of ordinary, silly, mundane, unexpected, tiring, invigorating, challenging, boring, new, broken, easy, cumbersome, exciting, scary, historic, and beautiful things.
When you’re intentional, you can find beautiful reasons to be happy, with or without FA.
“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds.” — Philippians 4:6-7
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.
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