The Zeego Tales: A Little Something Extra
Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we see. Its prison walls are…
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.
Featured Post
Finding the through lines in life with FA, even as my goals change
“This is your life, are you who you want to be?” the band Switchfoot crooned from my speaker as I put on a random morning playlist last week. Even though I’d heard this song, “This Is Your Life,” hundreds…
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Keeping a Homebound Physical Therapy Routine
I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and don’t drive, so I’m used to spending most…
My Family’s Legacy Is Centered on Grandma’s Cajun Food
Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so her bus ride to the small school in South Louisiana…
Thank You for Your COVID-19 Response — from a Rare Disease Patient
It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana folk) has been reported at the time of writing this column. While this pales in comparison to the…
My Physical Therapy Progress: Mastering the Dead Man’s Crawl
At my latest physical therapy appointment, I was out of my wheelchair and on the floor mats, struggling to maintain a “table” position. Mastering that position is the beginning of working on crawling more like a toddler…
I Am Redefining Hope, Every Day
I was giddy that day, a month or two ago. So much so that I texted a friend, “Do you ever feel like everything is coming together, falling into place?” I received a text back.
I Might Be Rare, but I Am Not Alone
My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but neither one noticed. I remember my…
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 around the occupational therapy clinic…
‘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 mom’s friends had brought their…
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 right to dessert. Don’t get…
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 safety net — away from…
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 the 20th floor of a…
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