Handling my life when it’s not easy being me

To deal with FA's progression, I'm left to modify my activities and perspective

Kendall Harvey avatar

by Kendall Harvey |

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When I’m frustrated about my Friedreich’s ataxia (FA) disabilities, life has a cruel tendency to remind me how very not “normal” I am. I continually find myself in circumstances that highlight my problems or force me to be a spectator or accept help. In those moments, I just want to scream and sob, saying, “Why can’t anything ever just be easy?”

I know that nothing is always easy, not for anyone. Before FA eroded my physical abilities, I faced challenges and had to work hard just like everyone else. Were FA not a part of my life, I know I’d still face struggles, hardships, difficulties, and frustrations. But with FA, I feel like my every single task is complicated.

Right now, for example, I had to wedge my walker alongside my desk, apply the hand brakes, and firmly plant my feet before sinking into my swivel chair, where I then had to position my feet on the warming blanket that resides under my desk to help keep my peripheral neuropathy in check. It takes about five minutes just to sit at my computer.

I know that seems small and relatively simple, especially when you consider that those little modifications ensure my safety and independence. But when literally every single task I attempt to accomplish must be modified to safely accommodate my FA symptoms, the compounding effect can be overwhelming and exhausting.

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FA’s progression is teaching me how to better advocate for myself

I’ve written about how I have more precautions and modifications in the winter and how that makes me feel. Those emotions are reinforced when I consider that my list of adaptations applies year-round and is constantly growing. That’s the unfortunate nature of living with a progressively degenerative condition like FA. The progression is relentless, which can result in suffocating emotions.

Sometimes I feel like Kermit the Frog when he laments, “It’s not easy being green.” It’s not easy being me.

‘Controlling what I can’

So what can be done about this feeling? How can I escape the inescapable realization that every aspect of my physical reality is challenging, will continue to be challenging, and will grow more challenging as my symptoms progress? How do I make peace with that so I can still have a productive and fulfilling life?

While I haven’t found a tried-and-true cure-all for this particular brand of FA blues, I’ve discovered a few tips for my mental health. One of my favorites is borrowed from a Disney movie, of all places. In “Frozen II,” Olaf the animated snowman says, “We’re calling this ‘controlling what you can when things feel out of control.’” My body feels out of control constantly. If I just focus on doing what I can to keep it safe, I’m “controlling what I can.”

I wish I didn’t have to make careful accommodations for simple tasks like getting out of the car, sitting on my driveway while my kids ride bikes with the neighbors, putting dinner in the oven, getting dressed, or going to bed, but that’s beyond my control. I can’t control what FA does to my body; I can control only my response to it.

Another mental-health tip I rely on when I’m fixated on the unfairness of being me is to adjust my perspective. Yes, it’s hard to do things, but what’s my option? I can try to keep doing things that are unsafe, pout and avoid tasks, ask for help, or figure out a way to complete an action safely.

I’ve paid the consequences of the first two options time and time again; they rarely lead to a happy ending. That makes help and resourcefulness the more ideal choices, in my humble opinion.

Life with FA isn’t easy. My challenges are countless and require deliberate adaptation. But there’s still beauty in my life, and those adaptations are worth it.

“Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else. For we are each responsible for our own conduct.” — Galatians 6:4-5 (New Living Translation)

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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