On the long drive home from rideATAXIA Dallas, I asked the driver, my buddy Ryan, for his overall takeaway from our weekend trip. “I feel like I understand you and your life a little better,” he managed to say before we drove into a rainstorm and the heavy spattering of raindrops made trying to converse futile.
The six-hour drive home seemed short, since the ride was filled with real conversation — chats not about the weather or anything superficial, but about life, God, death, and family. They’re topics that are awkward to discuss for most people, but they’re ones I gravitate toward like a moth to a lonely flame.
The weekend itself was incredible. We arrived on Friday afternoon, after the first Friedreich’s ataxia (FA) patient symposium in Denton, Texas, had ended. I wandered through the crowd. The FA community is remarkably strong; the shared experience of facing a rare disorder like FA marks us indelibly as FAmily.
I saw familiar faces and met many new people affected by FA. The bond shared between two strangers who experience the same uncommon struggles is profound. A few people even told me that they enjoyed my column. That is incredibly flattering. Thanks so much, and a shoutout to the top dog of BioNews Services, Chris Comish.
I made my way to the center of the gathered people, to the queen bee of the FA family, Kyle Bryant. (As one of my best friends, he doesn’t mind that I called him queen bee; in fact, he will be flattered.) He was autographing copies of his book, but made time to give me a quick hello.
After a little more mingling (but not for long, because crowds are overwhelming), Ryan and I brought the luggage up to our room. Well, it was mostly Ryan who did the lifting. I offered my legs as a shelf for our bags and my witticisms as moral support.
We entered and remarked on the huge size of the ADA-compliant room. And there in the hotel room, I felt fear for the first time on the trip.
“I don’t know if I can maneuver this room on my own,” I thought, feeling a wave of self-doubt. No amount of hardheadedness or the can-do attitude I strive to carry can erase the progression of FA. The truth is that at times I need help. I know that is not a weakness at all, but believing it is a struggle for me.
Especially humbling was the fact that I knew I’d have to ask my new buddy Ryan for help. I hadn’t known Ryan but a few months, since he moved to my hometown. I knew him as a friend of a friend, but we became buddies over our shared (and geeky) love of movies. I was scared to ask him for help.
Admitting that you are vulnerable is scary.
The weekend passed by, and it was fantastic. Being authentic about my physical challenges and limitations helped me to bond not only with Ryan, but also with all of my friends there who are enduring the same hardships I am. The bonds formed by people who understand the rare struggles we face are more real than most.
The thunder boomed on the drive home. The weather seemed worse now than it had been on Saturday, the day of the ride. (More on the rest of the trip coming next week.)
From the driver’s seat, Ryan told me that he was glad to know more about the daily ins and outs of my life — the struggles and limitations but also, he said, the relentless perseverance.
Perseverance is a trait that seems key to life, whether we bear a rare disorder or something else that causes us to feel weak.
My normal reaction is to put on a tough face and ignore the weakness. Ryan is teaching me differently. Before the severe weather hit on the ride back, he asked if we could listen to a TED Talk on the power of vulnerability.
Like everyone affected by FA, I am forced to reckon with my own vulnerability every day. Maybe accepting it is not a weakness but a strength. It’s easy for me to see that in other people; I need to do a better job of making the same allowance for myself.
That is my takeaway from Ryan and from rideATAXIA Dallas 2019.
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.
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