Sometimes I use my introversion as an excuse. It’s safe and secure; it’s familiar not to expose myself to unfamiliar situations. I find safety and comfort in familiarity.
“So what if I fall asleep and miss the meet-and-greet?” I asked my buddy Sajid. We were back in the hotel room after the rideATAXIA Philadelphia. I was lying in my hotel bed as he was getting ready to go shower.
He saw through my whining. “Then I will wake your hide up and make you go,” he said as he went into the bathroom, closing the door forcefully. (He didn’t use the word “hide.”)
I harrumphed, settling down more fully under the white sheets, and turned to the TV. “Wonder Woman” was on. Even though I’m not a fan of DC Comics as a whole, I really enjoy this movie. Something about the title character’s honest evaluation of humankind’s highs and lows, and choosing to focus on humanity’s potential …
Sajid dropped me off and I made my way to the meeting room of the annual meet-and-greet preceding the Children’s Hospital of Philadelphia’s Annual Friedreich’s Ataxia Symposium the next day. I made my way down the hall, silently cursing the carpet underneath me that made pushing my wheelchair ridiculously more difficult than it should have been. I saw a friend in the hallway, and we talked for a bit before I entered. There, I met my friend Kyle, whom I had only talked to online before.
After I left Kyle, my buddy Antonio from Brazil got me a beer. Since I was unable to push my wheelchair while holding a bottle, I stayed put. I was able to talk a little with my friends Brittany Sommerfield and Ron Bartek. Brittany is a Friedreich’s Ataxia Research Alliance (FARA) Ambassador from Canada, and Ron is the founder of FARA whose stepson with FA was raised in the same small Louisiana town as me.
After I finished my beer, my friend Jakob from Austria met my friend Kyle Bryant and me. I stopped by my friend Frankie Perazzola’s table next. (She is a great writer for this site. Check out her column “Fighting FA” here.)
By now, the meet-and-greet was ending, so we took a group photo of all of the FARA Ambassadors present.
My purpose in writing this shopping list of the people I spoke with that night is simply to say this: I enjoyed it. I think my FA is a big factor in my introversion and preference of alone time, as my awkward symptoms appeared as extreme clumsiness during my preteen years, when being seen as different was nauseating. So, it was easier for me to prefer to be alone and quiet, and even bookish.
Here, I encountered people who knew exactly how that felt. True, not all deal with FA symptoms through introversion, but they deal with it in their own way. For the first time in a long time, I didn’t feel like an outcast in a big crowd. I’ve begun to realize the accuracy of the slightly cheesy term other ambassadors use: FAmily.
Now should be the point where I say that introversion is a bad trait that I had to overcome to be happy. But I can’t say that. I don’t believe that. I love being introverted. I love that silence and aloneness is comforting to me, not something to run from.
I never want to be described as “bubbly.”
But maybe in my introversion, I begin to lose sight of others’ nobility. Maybe I vilify crowds too much and discard the potential of others. I need to work on that.
“So, how’d it go?” Saj asked when he picked me up after the meet-and-greet.
“Really, really good,” I said honestly. That surprised both him and me. My introversion isn’t an excuse anymore.
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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