When FA leaves me feeling trapped by my physical limitations
As her disability progresses, a columnist struggles to continue adapting
Learning to live within your physical limitations is challenging, especially when the list is constantly growing because of Friedreich’s ataxia (FA) and its ever-progressing symptoms. Lately, I’ve felt trapped in my body, imprisoned by the notion of “can’t.”
I’ve been adapting to and planning my life around my progressively disabled body since 2013, and it’s only gotten more difficult. I’m reminded, on a nearly minute-by-minute basis, that I’m not the 35-year-old I planned to be, nor am I anything like the other 35-year-olds I know.
I’m passionate about so many things, but my body doesn’t allow me to do them. I can’t entertain effortlessly, play sports without adaptive equipment, goof around with my friends, go for a run, participate in group exercise classes, hike, or upgrade my house with clever do-it-yourself projects.
What’s more, my helpful contributions around the house are becoming more and more limited because of safety. I can’t carry things, especially if they’re heavy or large, like laundry baskets, groceries, or my children. I can’t push a mop or vacuum because I’m holding on to my walker with both hands. I can’t help with yard work.
This has all made me feel like a burden to my friends and family more times than I can count, even though they passionately declare that I’m not one.
Some days, it seems like the only things I can manage are sitting and talking. Even then, my subconscious is aware of how slowly I’m speaking and how slurred I sound. I’m unintentionally keeping tabs on the number of times I have to repeat myself. I’ve always found fulfillment in chitchatting, and now it seems like FA is slowly taking that simple pleasure away from me.
Adapting to my limitations
Amid this growing storm of disappointment and frustration, I decided to watch a silly, mindless movie in hopes that I could just giggle and forget about my problems for a bit. My husband and I sat down to watch the 2022 movie “Ticket to Paradise,” in which Julia Roberts and George Clooney play exes who head to Bali to stop their daughter from rushing into marriage after a short courtship.
At one point, the characters enjoy a fun night out where they play beer pong and dance to ’90s rap hits, to the embarrassment of their daughter. Out of nowhere, I burst into tears, saying, “I won’t be able to do that when our kids are grown!”
This was irrational for several reasons, but mostly because my children are now 5 and 8 years old. I tried telling myself, “Who knows what the next 20 years will bring? Ten years ago, a life-altering diagnosis turned your world upside down. Who’s to say that 10 more years won’t bring a cure that will right your world?”
However, my pessimistic and realistic side reminded me that while I hope for the best, I need to prepare for the worst. There’s a very real chance that I’ll spend the majority of my life in a wheelchair, and that the list of the things I can’t do will continue to grow.
So I can continue to feel trapped in this progressively degenerating body, devastated by the things I can’t do, or I can adapt.
I’ll choose to adapt. I’ll look for ways to safely hold on to the things that I feel are slowly being taken away from me. I’ll make a list of what I can do, and do those things with gratitude and passion. I’ll seek fulfillment in those tasks. I’ll strive to embrace the things I can do while I make peace with what I can’t, come what may.
“Our hope comes from God. May He fill you with joy and peace because of your trust in Him. May your hope grow stronger by the power of the Holy Spirit.” — Romans 15:13 (NLV)
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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E. Johnson
Thank you, Kendal. It's always encouraging to hear from others in the fight.
From a mother of loved ones with FA.