I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, much of the suspense and spookiness lies in the mystery. The veiled monsters are the ones we fear the most.
Friedreich’s ataxia was that monster for most of my life. Though I knew the basics of the disorder, I didn’t want to acknowledge it. The unseen villain was in the background, never in focus. Since I didn’t have to think about it much, it was barely there at all, right?
Most afternoons during my teenage years, I’d grow tired of being in my bedroom after an hour or two, so I’d walk down the hall and out the front door. The sun would be shining, and the grass was a vibrant green as I made my way to the backyard.
The only sound besides the haunting chorus of cicadas was a vehicle driving by every now and then. I’d often play a solitary game: If I heard a car coming, my goal was to make it quickly behind my house before its driver could see me.
By the time I was a senior in high school, my walking was noticeably off-balance. The bad guy lurking in the shadowy background, FA began causing problems. Completing my path to the backyard without anything to hold onto for support became more of a strain with each passing day.
I knew that one day, I’d no longer be able to take walks like these, so I was motivated to go on them while I still could.
After I’d made it to the backyard, I’d practice doing pullups on the jungle gym, a rusty relic of when my sisters and I were much younger. Although I hadn’t been able to participate in sports since junior high, I was still able to do pullups, which made me feel active and normal. While doing these exercises, I didn’t have to think about the villain creeping up on me.
Sometimes I brought a notebook and pen to the backyard with me. I’d write bad poetry about battling FA, although I still refused to acknowledge it. Rather, I focused on my angst without mentioning what had caused it. I’d write verbose clichés about running from an enemy I had no interest in defining. Shards of broken glass and twilight — long before the awful, glittery vampires — were in almost every writing.
I was, and am, very emo.
Exercising and writing were my methods of catharsis. They worked well for a while, allowing me to live apart from my scary diagnosis. I avoided diving into research about my disease, afraid that the FA community would make me confront a reality I was scared to face.
Almost two decades have passed since then, and I can no longer deny that Friedreich’s ataxia is a huge part of my life. The bad guy is unmasked. FA’s symptoms have become stronger in my life, and I fell into acceptance.
I didn’t choose acceptance out of virtue, but rather convenience. It was easier to face my disorder than continue to ignore it. What’s funny is how much of a relief it was to face the villain and look him in the eye.
Although I can’t walk to my backyard anymore, I now walk a path of acceptance. FA can seem scary and make life hopeless at times. But I realized that ignorance isn’t a comfort blanket.
My pullups on the jungle gym are now rides on my recumbent trike. My bad poetry now is more like prose in this “Little Victories” column.
Rather than suffering for an arcane reason, I found that identifying the monster makes it much less scary. Since I no longer avoid Friedreich’s ataxia, the world has become a lot friendlier and a lot less tragic.
Is there a shadowy bad guy you hide from in your life? Try to identify him and remove his mask. He really isn’t that spooky, you meddling kid!
And you are braver than you might imagine.
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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