The Zeego Tales: A Conflicting Gift
I saw one of my middle school teachers the other day. Two decades have passed since I was in her religion class. She saw Zeego, my service dog, as he curiously sniffed…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
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From fumbles to fortitude: Learning to quiet my inner critic
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than…
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‘I’m Going to Teach You to Walk’
The sky turned pinkish and the clouds became bright blue as the Louisiana sun reached its western-most point and began to retreat from this summer day. It was five years ago. My…
Savior? Safety Net? Stumbling Block? My Complicated Relationship with My Wheelchair
I was the weird kid who asked my mom to fix me a plate of spinach as an after-school snack. Most of my friends only ate spinach to appease their parents and earn the…
Lights, Camera, FA!
My physical therapist Kevin pushed a sofa to the middle of the room. I positioned my wheelchair next to it and transferred onto the soft cushions. Sitting there, I rolled my wheelchair — my…
Surrounded by Heroes in Philadelphia
I looked around and grinned. Our individual values are upheld by the people with whom we surround ourselves, and that made it incredible to be there. The corner office on…
A Scar that Exposed My Worth
Before I knew it, I was face down on the tiled floor. When I started to fall forward, seated in the handicapped-accessible shower, my arms made a last-ditch effort to grab onto…
The Sound of Forgiveness
I was grateful to be around my large extended family at our yearly Christmas party. Zeego, unleashed in the huge building where the festivities took place, sniffed…
2019: A Year of Little Victories
I learned a new word this year: “mFARS,” which stands for the modified Friedreich’s Ataxia Rating Scale. The mFARS measures the overall effect of Friedreich’s ataxia (FA), rating abilities such as upper…
The Zeego Tales: Zeego Come Home!
“The Zeego Tales” track the wonders of my life with my service dog, Zeego. The day Zeego decided to make a break for it, the autumn air was unseasonably warm. I should…
I’m Learning Compassion for My Ataxic Self
It was a good day at physical therapy. I was exhausted from doing leg, arm, and back stretches with the help of my physical therapist. I…
Losing the Puzzle, Winning the Game
I took off the hood that blacked out my vision and covered my face. My friend Ryan and I were in a dimly lit room. We had 60 minutes to…
The Zeego Tales: Letting the Light In
“The Zeego Tales” track the wonders of my life with my service dog, Zeego. I am in my new standing frame, clumsily clicking on my laptop’s keyboard. Zeego, my service dog,…
