First of two parts.
I answered my phone on speaker and set it on my table. I was worried that the call had a bad connection, as I heard only static. I almost hung up when the displaced-Californian voice of my good friend Kyle Bryant gave our usual greeting: “Yo, man.”
Phone calls are always iffy at my house, as service from cellular towers is, at best, spotty. Such is the inconvenience of living in a rural area. Static is familiar here.
I told Kyle that I had just finished listening to the latest episode of the podcast he co-hosts with another columnist at Friedreich’s Ataxia News, Sean Baumstark. The Two Disabled Dudes podcast follows our titular hosts as they conduct interviews with people in the rare disease or disability world, share thoughts on being disabled without letting that label define them, and try really hard to be funny (and sometimes succeed).
The hosts’ authentic approach to living a productive life, even with a debilitating disability, shines through in every episode. The podcast is worth a listen.
I told Kyle that I couldn’t stop thinking about the part of the latest episode when he described a talk he recently gave to an elementary school class. He remarked that he was absolutely sure of what he’d say, since he’s been telling the same story of his diagnosis for over a decade.
I saw myself in his words. For over a decade, the way I’ve told my diagnosis story hasn’t changed much at all. Even though the activities of the past will never change, my perspective shifts constantly over time. Still, the way I tell my story remains static, unchanging.
That bothers me.
I pride myself on being a dynamic person — someone whose thoughts and beliefs are constantly being reexamined and edified. How can that be true if I keep reciting my same old origin story in the exact same way?
Every person with a rare disease has a diagnosis story. (The Friedreich’s Ataxia Research Alliance, or FARA, has a “Meet the Community” website that collects many FA patients’ diagnosis stories.) We hone it over time since we often tell it to new people. We learn what parts of our story really affect the audience and even where to throw in some humor.
Our diagnosis story becomes a reliable tale for us, allowing us to ascertain some order over a chaotic diagnosis. Or at least, that’s how it is for me. My diagnosis story becomes more of a recitation or even a work of fiction than my honest and dynamic story.
On our phone call, Kyle was surprised that his random words in the podcast affected me so, and he agreed with me: Since we are living, breathing people, our stories should be living and breathing as well.
I take pride that every part of me is evolving. On the quest to better myself, I hope that I’m not a static character, one who never changes. I want to be a dynamic character, one always adjusting and maturing, hopefully on the way to being a great person. After all, dynamic characters are the heroes in almost every story.
Maybe being dynamic entails not telling the same reliable diagnosis story.
Kyle and I caught up a little more, then hung up, both to eat dinner. It wasn’t until after our call ended that I realized there hadn’t been any more static.
Next week, I’ll attempt to tell my diagnosis story in a new way.
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.