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.
I was an athlete until my mid-20s. I swam competitively for 14 years and was a cheerleader, a volleyball player, and an avid runner.
My involvement in organized sports ended with my formal schooling. However, that didn’t stop me from keeping in shape. I went to the gym at least four days a week, swam laps in the pool, and joined recreational sports leagues.
I loved working out and getting my blood flowing. I loved competing with my husband and spending time on our health. I loved my body — pushing it to its limits, and watching it transform into something strong and capable.
My love weakened when I was 25. Physical activity became difficult, no matter how hard I trained. I fell when reaching for the softball or volleyball. My legs were losing their muscle tone. I was exhausted all the time.
One day, I set out to walk my dog around the high school football stadium. After our warmup, I literally couldn’t run. My body wouldn’t cooperate — my legs seemingly forgot how to run. I knew something wasn’t right and Googled an internal medicine doctor when I got home.
Arriving at a diagnosis of Friedreich’s ataxia (FA) was a journey. I fell into a self-hating spiral. I stopped working out and finished my sand volleyball season with zero passion. I was angry because I always had been so diligent about training. I was so in tune with my body, but it betrayed me.
I no longer recognized my body. Eventually, I stopped fighting for it.
After a dark season of mourning, I realized that self-loathing made things worse. I returned to the gym, hoping to keep my heart strong and my muscles in shape. But even that became too hard and dangerous.
Fast-forward three years and two babies. I decided it was time to fight again and attended my first physical therapy appointment. My physical therapist is amazing and quickly became one of my best friends. I genuinely look forward to our weekly sessions. At the start, they felt more like a personal training session. I didn’t feel as though I’m a neuromuscular patient fighting a relentlessly progressive disease so much as a normal 29-year-old working out with her friend.
I am nearing three years of weekly physical therapy sessions. My disease has progressed to the point where I need a walker. My physical needs have changed, as have my sessions. I don’t feel as though I’m “working out” anymore. I no longer can ignore the fact that I am a patient. I need physical therapy to improve my strength and muscle memory exercises to complete everyday tasks.
I am conscious of how I look and feel during workouts that once were easy. Introducing new tests to address FA progression is devastating. Needing a spotter to complete exercises I did in physical therapy only a year ago disheartens me.
Physical therapy is a mental, physical, and emotional workout now. It helps me fight disease progression yet also makes me painfully aware of my progression. Despite my efforts and hard work, FA is winning. My disease is progressing, no matter how hard I fight. It’s soul-crushing.
But I will keep going to physical therapy and giving it my all, even if I’m incorrect in thinking that I’m doing something beneficial. What I do now is better than sitting at home and doing nothing.
Plus, I get to hang out with a good friend for an hour every week. What a bonus!
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