Posts by: Matt Lafleur

Matt Lafleur

Matt Lafleur was diagnosed with Friedreich's ataxia at age 11. He has a bachelor's degree in English and a master's in mental health counseling.

March 25, 2020March 23, 2020

Thank You for Your COVID-19 Response — from a Rare Disease Patient

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

March 18, 2020March 18, 2020

My Physical Therapy Progress: Mastering the Dead Man’s Crawl

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

March 11, 2020March 9, 2020

I Am Redefining Hope, Every Day

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

February 26, 2020February 24, 2020

I Might Be Rare, but I Am Not Alone

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

February 19, 2020February 17, 2020

The Zeego Tales: A Conflicting Gift

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

February 12, 2020February 10, 2020

‘I’m Going to Teach You to Walk’

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

February 5, 2020February 3, 2020

Savior? Safety Net? Stumbling Block? My Complicated Relationship with My Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

January 29, 2020January 28, 2020

Lights, Camera, FA!

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

January 22, 2020January 21, 2020

Surrounded by Heroes in Philadelphia

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

January 15, 2020January 22, 2020

A Scar that Exposed My Worth

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

January 8, 2020January 6, 2020

The Sound of Forgiveness

Columns, Little Victories - a Column by Matthew Lafleur

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 beneath the ... Read more

December 18, 2019December 16, 2019

2019: A Year of Little Victories

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

December 11, 2019December 9, 2019

The Zeego Tales: Zeego Come Home!

Columns, Little Victories - a Column by Matthew Lafleur

“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 ... Read more

December 4, 2019December 2, 2019

I’m Learning Compassion for My Ataxic Self

Columns, Little Victories - a Column by Matthew Lafleur

­ 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 sat up ... Read more

November 27, 2019November 22, 2019

Losing the Puzzle, Winning the Game

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

November 20, 2019November 18, 2019

The Zeego Tales: Letting the Light In

Columns, Little Victories - a Column by Matthew Lafleur

“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 ... Read more

November 13, 2019November 13, 2019

I’m Not Finished with Life Yet

Columns, Little Victories - a Column by Matthew Lafleur

When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn ... Read more

November 6, 2019November 4, 2019

A Perfect Picture: FA Symposium 2019

Columns, Little Victories - a Column by Matthew Lafleur

Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby.  Taking a group picture ... Read more

October 30, 2019October 25, 2019

My Little Victories Are Enough for Me

Columns, Little Victories - a Column by Matthew Lafleur

Out of curiosity, I ran an online search of “Kyle Bryant,” one of my best friends. I call him the poster boy for Friedreich’s ataxia (FA), and the search ... Read more

October 23, 2019October 21, 2019

Phantoms and Flowers: Hades, Persephone, and Hope

Columns, Little Victories - a Column by Matthew Lafleur

A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as ... Read more

October 16, 2019October 14, 2019

The View from My Standing Frame

Columns, Little Victories - a Column by Matthew Lafleur

As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on ... Read more

October 9, 2019October 4, 2019

The Best Man Gets His Groove On

Columns, Little Victories - a Column by Matthew Lafleur

Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at ... Read more

October 2, 2019October 23, 2019

The Zeego Tales: Takeoffs Are Scary!

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. The sound of rushing wind and the rumbling of turbines intensified as I felt ... Read more

September 25, 2019September 25, 2019

Honoring the Legacy of Serena Lawrence

Columns, Little Victories - a Column by Matthew Lafleur

Serena Lawrence hired me as a columnist for BioNews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to ... Read more

September 18, 2019September 19, 2019

Consistency Is Key with FA — Just Ask My Crummy Friend

Columns, Little Victories - a Column by Matthew Lafleur

My phone alerted me to a text message. “Would you be devastated if we canceled this week?” It was my friend Will, canceling our weekly appointment yet again. I ... Read more

September 11, 2019September 18, 2019

Longing for the Sky

Columns, Little Victories - a Column by Matthew Lafleur

“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I ... Read more

September 4, 2019September 18, 2019

Checking Up on My Heart’s Health

Columns, Little Victories - a Column by Matthew Lafleur

“The heart really is an amazing machine,” the technician mused in the dim examination room.  I was shirtless on the sterile white bed with seven wires attached to my ... Read more

August 28, 2019September 11, 2019

Physical Therapy: A Lesson in Little Victories and FA

Columns, Little Victories - a Column by Matthew Lafleur

“I think you got this,” Dr. Landreneau told me.  I didn’t know how to respond, and I was too worn out to, anyway. I graciously sipped through the straw ... Read more

August 21, 2019September 25, 2019

Finding a New Endeavor: Writing a Children’s Book About Rare Diagnoses

Columns, Little Victories - a Column by Matthew Lafleur

The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday.  Speaking of unremarkable, the package itself ... Read more

August 14, 2019September 4, 2019

‘The Lion King’ and the Circle of Life with FA

Columns, Little Victories - a Column by Matthew Lafleur

My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the ... Read more

August 7, 2019September 4, 2019

The Zeego Tales: Naming the Hurricane

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary ... Read more

July 31, 2019August 28, 2019

FA Allows Me to See Underwater and Face Its Uncomfortable Elements

Columns, Little Victories - a Column by Matthew Lafleur

“I’d give all of my degrees to write as powerfully as Melville,” Dr. Cicardo mused. She had read a passage from “Moby-Dick; or, The Whale“ aloud to her small ... Read more

July 24, 2019September 4, 2019

Living By the Book: I Can Pursue the Joy of Reading in a Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

My unease kept growing on the first day of this evening class during my third semester of college. The professor hadn’t shown up yet, so we were a small ... Read more

July 17, 2019August 26, 2019

A Postcard from the Island of Misfit Toys

Columns, Little Victories - a Column by Matthew Lafleur

Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, even with decent grades from ... Read more

July 10, 2019August 22, 2019

Battling Like Sisyphus

Columns, Little Victories - a Column by Matthew Lafleur

An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, ... Read more

July 3, 2019August 8, 2019

The Zeego Tales: From Florida to Louisiana

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Zeego mumbles in his sleep. As I type this, he is on the floor ... Read more

June 26, 2019August 5, 2019

Breaking the System of FA

Columns, Little Victories - a Column by Matthew Lafleur

The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I ... Read more

June 19, 2019August 7, 2019

Living a Nomad’s Life

Columns, Little Victories - a Column by Matthew Lafleur

My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t ... Read more

June 12, 2019August 2, 2019

Playing Catch with Dad Despite My FA’s Progression

Columns, Little Victories - a Column by Matthew Lafleur

Those days were sticky hot. Or, at least, that’s how they are in my memory. I made my way to the backyard; the bright green of the summer grass ... Read more

June 5, 2019August 2, 2019

The Zeego Tales: Graduating Puppy College and Coming Home

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Read the first installment here. My dad pushed me up the ramp and to ... Read more

May 29, 2019May 24, 2019

My Cousin Served as My First Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

“Ready?” my cousin asked. “I guess,” I said halfheartedly, ashamed, and eager for this to be over. My cousin easily lifted me onto his back. I remember thinking how ... Read more

May 22, 2019May 20, 2019

The Zeego Tales: Earning the Trust of My Service Dog

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. It has never been my style to ask for help. Call me “strong-willed,” if ... Read more

May 15, 2019May 13, 2019

Louisiana FA Community Helps Ease Loneliness

Columns, Little Victories - a Column by Matthew Lafleur

“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community ... Read more

May 8, 2019May 6, 2019

Planning for My Unpredictable Future

Columns, Little Victories - a Column by Matthew Lafleur

“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone ... Read more

May 1, 2019April 29, 2019

Little Victories Really Matter with FA

Columns, Little Victories - a Column by Matthew Lafleur

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. *** Despite all ... Read more

April 24, 2019June 28, 2019

Despite the Storm, rideATAXIA Dallas Was Worth It

Columns, Little Victories - a Column by Matthew Lafleur

My eyes shot open in the middle of a pleasant dream. The scene was familiar: There was a pool, perhaps a beach? But the dream vanished shortly after I ... Read more

April 17, 2019June 28, 2019

Finding Friends, Family, and Vulnerability at rideATAXIA Dallas

Columns, Little Victories - a Column by Matthew Lafleur

On the long drive home from rideATAXIA Dallas, I asked the driver, my buddy Ryan, for his overall takeaway from our weekend trip. “I feel like I understand you ... Read more

April 10, 2019June 21, 2019

Because Saying ‘No, I Won’t’ Just Isn’t My Style

Columns, Little Victories - a Column by Matthew Lafleur

They couldn’t understand why I wouldn’t try, and my absolute refusal surprised me, too. Downtown Los Angeles in 2005 was unfamiliar to me, in a good way. It was ... Read more

April 3, 2019June 3, 2019

Waiting to Meet My New Service Dog

Columns, Little Victories - a Column by Matthew Lafleur

I first encountered a service dog accompanying a person with Friedreich’s ataxia (FA) three years ago. I had met my friend and fellow FARA ambassador Andrea and she had ... Read more

March 27, 2019May 15, 2019

Consistency in the French Quarter with FA

Columns, Little Victories - a Column by Matthew Lafleur

My unharnessed wheelchair swerved unexpectedly. I reached out to grab onto something so that I wouldn’t flip over. Riding in the back of my former wheelchair-accessible van was challenging. ... Read more