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On Good Days, I Fear the Sleeping FA Giant

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.


Now and then, I will have a “quiet spell” with my Friedreich’s ataxia (FA). I will notice that I haven’t fallen in a while. I haven’t noticed any new problematic symptoms develop. I will be relatively pain-free and somewhat energized. I will have some days, weeks, or even a month or two where I will be fully adjusted to my “normal” and feel content with my abilities (or lack thereof).


My experience has taught me to savor this time, no matter how long it lasts. I do my best to embrace the good days and make the best of things whenever and however I can. Unfortunately, I have also developed a nagging fear during those times. History has taught me that when things seem “too good to be true,” they usually are, at least where FA is concerned. No matter how hard I try to embrace the good times, I find myself waiting for FA to catch up to me because it usually does, and with a vengeance. It’s difficult to ignore the negative little voice inside my head that keeps telling me that the good likely won’t last.


I had a great couple weeks in May 2018 when I wasn’t yet dependent on my walker. I hadn’t fallen in months. I had started swimming for exercise again. I was talking to a study coordinator about enrolling in a clinical trial. I felt great! We spent Memorial Day at my parents’ house swimming, eating pizza and popsicles, and enjoying the start of summer. An hour after getting out of the pool, I was pulling up to the hospital in an ambulance after falling and obliterating my ankle.


With FA, my fate can change so rapidly that I’ve begun to mistrust the good for fear of the bad. And that fear is exhausting. I would rather be fully present, fully engaged, and fully appreciative of whatever good days, weeks, or months I am allowed. Instead, I find myself walking on eggshells (really) for fear of making a wrong move and bringing the good days to an abrupt or painful end.


There is no denying that FA is a cruel, unpredictable, ever-evolving giant. I have learned that although I can’t always physically fight it, I can take steps to mentally fight it.


To use a sports metaphor, instead of fearing the jinx, I can embrace my “no-hitter” and enjoy it as long as I can. I have trained myself to notice the good times and appreciate them. I harness my fear and channel it as extra caution. When I am scared about the inevitability of falling, I make the mental (and physical) efforts to go slowly and deliberately. When my fatigue creeps up on me, I relax and enjoy “movie days” with my children instead of running errands and chasing them around at parks. When my back is hurting and my neuropathy is painful, I have my physical therapist adjust and stretch me.


Fear is inevitable when you have a progressive, degenerative disease. But giving in to that fear by letting it rule your life is unproductive and unhealthy. Instead, acknowledge and harness the fear. That fear can help you make proper adjustments and healthy decisions when you face a giant like FA on a daily basis.

Having an antidote to fear can help you reign it in and keep your fear from helping your giant defeat you. For me, the antidotes I most rely on are purpose, joy, and perspective. I encourage you to find yours.

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