I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
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.
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)
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