Embracing the Awkward Moments That Come With FA

Sean Baumstark avatar

by Sean Baumstark |

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awkward moments, progression, Rare Disease Day, grief, move forward, small lessons

“Can you send help up, preferably a gentleman?” I asked as I lay on the cold tile floor, mostly motionless and without clothes — only a wet towel.

Although my body was at a standstill and most of my mental capacity was consumed by extreme pain, there was still a piece of me that was embarrassed knowing that first responders were going to find me naked on that floor. On one hand, I wanted to snap my fingers and be at the hospital already, and on the other hand, I wanted to snap my way into being fully clothed.

My whole life is riddled with awkward moments like this one, when I slipped in my hotel room after a shower and broke my femur. Sometimes I laugh (not out loud) when I see National Awkward Moments Day” listed on calendars because I imagine that some people simply picture me when they read that designation.

Many rare diseases probably come fully loaded with symptoms that create awkward moments on a daily occurrence. When I consider Friedreich’s ataxia (FA) and other gait-disturbing conditions, I wonder why we haven’t flipped the roles yet: Instead of an “Awkward Moments Day,” why not create a calendar that assumes that every day is filled with awkward moments, and celebrates one day where everything might move in harmony with what we imagine will happen when we rearrange our bedroom furniture?

Not all of my awkward moments end with a crescendo of broken bones or trips to the emergency room, but those would certainly make for a good “Top 10” list. The “simple” tasks of opening a door, passing another person in a hallway, and even signing a petition “real quick” as I exit a major retail location all lead to awkward moments, too. Certainly less breathtaking than a slip-and-fall, but just as awkward and embarrassing.

Given the progressive nature of FA, a lot of time may pass before I notice the loss or deterioration of my abilities. I don’t realize many of my awkward moments until much later or after consistent repetition. A picture of myself or a cellphone video clip are the usual sources for those realizations.

Although usually embarrassing, my awkward moments are often caught on a friend’s Instagram or Snapchat story. Seeing and hearing myself in action dishes up a solid dose of reality for me. I’m glad that I can laugh at most of these moments (even the bone-breaking ones), and I’m grateful that I’m surrounded by people that laugh along with me.

Seven days post-surgery to keep my hip and femur intact. October 2019, in-patient rehab, Pennsylvania. (Photo by Felicia DeRosa)

My days will only become harder, and my physical abilities will continue to fade. My awkward moments will likely increase in frequency, as will the jaw-dropping “oh my gosh” glances from those around me.

As much as I’d rather not lose control of my own muscles, I wouldn’t erase my rare disease journey if I could. Instead, with the help of silly calendars and fun friends, I’ll look for the humor in my awkward moments and find ways to celebrate them.

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