Where the Heck Is Matt?

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by Matt Lafleur |

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RARE Courage

It doesn’t make sense, and I’ve given up trying to figure it out. It’s a silly video sponsored by a chewing gum company that paid a man to travel the world and film himself doing his goofy dance in 42 countries. So, why do I watch it every year and still get teary-eyed every time I see it?

I’m pretty sure it has to do with the connection it shows between people across borders, languages, ethnicity, and even ideology.

Maybe all that Matt, the man in the video, has to offer us is his silly little dance. Thousands of people took part in that short video and millions have watched it. It’s enough to make this grown man blubber.

I think that forging connections between different people — in any way — is profound.


It’s easy to get lost in our own minds. At least it is for me.

Solitarily, we all barrel forward through time, each of us caught in the midst of a slow belly-flop toward the end. In polite conversation, though, we never talk about “the end.” It is too grim and bitter.

When I first discovered that I had a rare and debilitating disease, Friedreich’s ataxia (FA), my future endpoint shifted from “not worth thinking about” to “looming” and “monstrous.”

I couldn’t handle the thought of requiring assistive devices to get around. As an athletic child (albeit an unimpressive one), the thought of using a cane, a walker, or even a wheelchair was unacceptable to me. In my pride, I knew that I would overcome. I wouldn’t need assistance; my determination, my faith, and my (mostly) decent character would shield me from being anything other than independent.

The deeper reality of FA, that it shortens a patient’s life, was too abhorrent to consider. I chose ignorance, pushing out all thoughts of my disorder from my conscience so that in my mind’s periphery, thoughts of FA and hopelessness began to intertwine. My disorder and depression were out of the spotlight but never far from my thoughts; two shadowy background characters in the overrated one-man show that was me. The less I focused on those shadowy thoughts, the more they became one and the same. I couldn’t think of FA or anything related to it without becoming overwhelmed by depression.


I don’t remember if Jean or I reached out first. I was settling into a new phase of my life. School was over and so was the student lifestyle. I guess I had grown up, as much as I cringe while typing those words. I had recently joined the Friedreich’s Ataxia Research Alliance Ambassador Program, which exists to raise awareness and fund research into a treatment or cure for FA.

I gravitated toward Jean because she has a degree in social work and I have a degree in counseling — and we both have FA. I’m pretty sure this is a superhero origin story.

Jean had the brilliant idea to host a video chat every month for teens diagnosed with FA.

Video chat didn’t exist when I was a young teen, but I believed that Jean’s idea of solidarity would hugely boost a teenager’s morale and ability to cope with having a rare disorder. I thought that although the struggles of a teen with FA are uncommon, being connected to others faced with the same challenges could help decrease feelings of alienation. As we continued to meet online month after month, the group shifted from a gathering of strangers to a community of friends. There is a profound strength in that sense of connectedness.


While sometimes life has been really rough, overall it’s been a good 33 years. I hope I get to do it again.

I think that one of the greatest things anyone can do is promote the connectedness between different people — whether through a video chat for teens with a rare disorder or an around-the-world goofy dance video.

The title of the silly video asks where Matt is. I don’t know where he is these days, but I can answer for this Matt: I’m not going anywhere. Though I may be sappy and teary-eyed, and even though there isn’t anything profound in what I do, I’m still here.

If you or someone you know is interested in participating in the monthly FA Teen Hangouts, please email Jean at [email protected].


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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