With FA, I’m constantly asking what went right and what I learned
To stay safe and independent, I make frequent adjustments to my lifestyle
As I’ve often discussed, there is no handbook for living with a progressively degenerative condition like Friedreich’s ataxia (FA). However, there are good general rules of thumb that everyone can follow, such as safety first; if at first you don’t succeed, try and try again; tomorrow is a new day; and so on. Yet, in life with FA, the risk of failure can be costly.
What I mean by that is if I overestimate my abilities and stumble, I am more likely than a non-FA person to end up on the ground with an injury. I can’t rely on my instincts or reflexes to correct my balance and keep me on my feet, nor can I always depend on my walker to do so, which leaves me with only a couple options.
One, I could give up trying to do anything for myself. I am wholly uninterested in this, so I won’t waste any more time playing out that scenario. That leaves option two: figuring it out.
What went right, and what did not?
Since safety and independence are top priorities for me, I spend a lot of time thinking about possible situations I could find myself in and trying my best to plan ahead. Have I been to that place or somewhere similar before? What will the terrain be like? Will I have helping hands? Will seating be available, or should I bring a seated mobility aid?
After an event or outing, I do a quick mental assessment of what went right and lessons learned. I think back to my preparations and what kept me safe, what felt risky, what seemed over-the-top or unnecessary, and what helped me feel independent. Then I think about what I can and should do to feel safer or more independent the next time I’m in a similar situation.
A popular quote, often attributed to Winston Churchill, goes: “Success is not final, failure is not fatal: It is the courage to continue that counts.” Churchill may not have actually said this, but it’s still a healthy perspective for handling life with a progressive disease.
With the reminder that success isn’t necessarily final, my little exercise in reflection seems more valuable. What worked this time might not work next time. I need to keep being flexible and adaptable. Success isn’t final, nor are my abilities.
With the reminder that failure isn’t fatal, I can permit myself to look at my mistakes with curiosity and compassion, and learn what to do differently next time — i.e., what to improve upon to help ensure more safety and independence.
Lastly, the reminder that it takes courage to continue serves as both praise and a challenge. It takes a lot of courage to keep figuring out how to adapt to what FA does to my body, but figuring it out is worth it. Mustering the courage to get out of bed is worth it. Finding the courage to keep doing things that bring me joy and fulfillment is worth it.
Living life with courage is worth it.
“This is my command — be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” — Joshua 1:9
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.
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