Sometimes I Just Want to Be Average

Matt Lafleur avatar

by Matt Lafleur |

Share this article:

Share article via email
Main graphic for column titled

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.

Recommended Reading
walking problems/friedreichsataxianews.com/new system may better measuring gait problemss

New System May Better Measure Walking Problems

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.

***

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.

Comments

Susan Bot avatar

Susan Bot

Matt you are an inspiration to many. My youngest grandson's BF was diagnosed with FA at the tender age of 7. Because of Covid many of his visits to his FA doctors in PA were postponed along with P/T, etc. He tells his Mom he just wants to be like the other kids. God Bless you Matt

Reply
Matt Lafleur avatar

Matt Lafleur

Thanks so much9 for reading and pllease tell your grandson to stay strong. I was diagnosed at 11, so I know how rough it is to navigate childhood with FA. Ik can promise him though that adapting to li-fe with FA does get easier. If he ever wants to talk, I'd be more than willing to listen.

Reply
Donna Weatherford avatar

Donna Weatherford

My granddaughter was diagnosed with FA at the age of 11 now she is 14 is very strong,willing Brave never complains and I'm just always reading stories to find something to make it a little better and just to know she not alone and lessening to all the different stories and all the strong people with FA God Bless

Reply
Matt Lafleur avatar

Matt Lafleur

Thanks a lot for reading and same as above: tell your granddaughter that it DOES get easier and shake can reach out to me if she ever wants to talk.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.