Sometimes I Just Want to Be Average

Everyone could see me grimacing uncomfortably. “Here we go again,” I think as I feel an uneasy lump in my stomach.

I find myself back in 1999 in a recurring, unpleasant dream I have every few months. In the dream, I’m at my desk near the back of a seventh-grade classroom, and my stomach is contorted into nervous knots.

One by one, the other students stand up from their desks and walk to the large dry-erase board to diagram algebra problems from last night’s homework and explain their solutions. Then, they return to their seats.

As my turn approaches, I stare at the stoic clock on the wall, pleading and praying for the red second hand to tick faster. But my prayers don’t work, and my turn soon comes.

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All eyes are on me as I clumsily get up from my desk, notebook in hand. As I make my way to the front of the classroom, I can feel my temples pulsating with each beat of my nervous heart. I don’t look up — I never do — because I am ashamed. I imagine the entire class looking at me with pity as I focus solely on my feet and my walking, which is slightly off-kilter.

My Friedreich’s ataxia (FA) symptoms became apparent in junior high school, most notably my poor balance and unsteady gait. Having to walk in front of others, like in the dream, filled me with shame. Back then, I hadn’t yet realized that FA’s ravages on my body weren’t my fault. I assumed that somehow I had failed God, or I had failed in life, so I was being punished with increasing clumsiness.

During that walk to the front of the room in my dream, I sometimes hear the snickers of my peers, which remind me that I’m taking too long to reach the board, and that I’m not normal. The dream reminds me that back then, I yearned to be normal. In many ways, I still do.

I’ve since realized that it’s just a dream about something that happened a long time ago. These days, rather than fearing that I’ll stand out because of my disorder, I try to embrace being unaverage. After all, even when it’s uncomfortable, being seen might help someone else with FA to feel less alone.

By refusing to hide both the high moments and the pitfalls in my life, I may be helping and encouraging a reader to do the same. Or at least I hope I am.

That said, a part of me still longs for anonymity, which seems countercultural these days, with social media’s onslaught of stories and photos of people at their best — in happy relationships, being successful, feeling adventurous, getting fit, smiling.

I’ll admit, I become jealous of this manufactured perfection. This is especially true when I’m forced to call someone for help because I’m lying on the floor after losing my balance from sneezing.

Maybe refusing to compare myself to others when they’re at their best is the key to contentment in my life. Maybe, as Jeroen van Baar noted in a TED Talk, embracing mediocrity is the path to a well-balanced and happy life.

To my fellow FA patients: We don’t need to always be strong, successful, and motivational. Sometimes it’s OK to just be, and no one should be ashamed of that.

I have no idea how my story will end. Maybe one day there’ll be a cure for FA, and Friedreich’s Ataxia News will be archived. Maybe my column, “Little Victories,” will end with a big victory instead.

And maybe before the curtain closes on my life with FA, the audience will see me approaching a crowded street corner and joining the crowd of random people having random conversations, each indistinguishable from the other.  And then I’ll get lost in the crowd, where no wheelchair, slurred speech, or ataxic movements will make me stand out.

I’d keep my head down — not out of shame, but rather to revel in that newfound anonymity. And people might not notice, but I’d be smiling.

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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.