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.

August 26, 2020August 24, 2020

Learning to Confront the Mysterious Villains in Our Lives

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” ... Read more

August 19, 2020August 14, 2020

When a Rare Disease Treatment Comes Out, but It’s Not for You

Columns, Little Victories - a Column by Matthew Lafleur

Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular ... Read more

August 12, 2020August 10, 2020

What ‘Hamilton’ Taught Me About Waiting

Columns, Little Victories - a Column by Matthew Lafleur

I’m not patient. Not at all.  I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, ... Read more

August 5, 2020August 3, 2020

First I Swim, Then I Drown, Now I Float

Columns, Little Victories - a Column by Matthew Lafleur

I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The ... Read more

July 29, 2020July 27, 2020

Even Though My Body Is Failing, I’m Not Hopeless

Columns, Little Victories - a Column by Matthew Lafleur

“Well look at that,” the doctor remarked, obviously impressed.  The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a ... Read more

July 22, 2020July 20, 2020

Why I Choose to Use a Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get ... Read more

July 15, 2020July 14, 2020

Kyle Bryant Announces the First-ever Virtual rideATAXIA Global Challenge

Columns, Little Victories - a Column by Matthew Lafleur

Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” ... Read more

July 8, 2020July 6, 2020

Gaining Perspective As I Learn to Tolerate Needles

Columns, Little Victories - a Column by Matthew Lafleur

“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix ... Read more

July 1, 2020June 29, 2020

A Vision Test Helped Me See the Need for Self-care

Columns, Little Victories - a Column by Matthew Lafleur

“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into ... Read more

June 24, 2020June 23, 2020

Now Is All We Have, and Sometimes That’s Enough

Columns, Little Victories - a Column by Matthew Lafleur

The clanky metallic sounds are what I remember most.  Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that ... Read more

June 17, 2020June 12, 2020

Rolling Toward Empathy

Columns, Little Victories - a Column by Matthew Lafleur

About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this ... Read more

June 10, 2020June 8, 2020

I’m Confident rideATAXIA Dallas Will Happen in November

Columns, Little Victories - a Column by Matthew Lafleur

The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks ... Read more

June 3, 2020June 1, 2020

Reconciling with My Past, My Self, My Dream

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without ... Read more

May 20, 2020May 18, 2020

Learning to Shift from ‘I’ to ‘We’

Columns, Little Victories - a Column by Matthew Lafleur

It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason ... Read more

May 13, 2020May 11, 2020

Playing the Cards We’ve Been Dealt

Columns, Little Victories - a Column by Matthew Lafleur

The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree ... Read more

May 6, 2020May 4, 2020

Parallels Between 2018’s ‘Bird Box’ and the Coronavirus Pandemic

Columns, Little Victories - a Column by Matthew Lafleur

About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best ... Read more

April 29, 2020April 27, 2020

Choosing Our Own Identity

Columns, Little Victories - a Column by Matthew Lafleur

On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit ... Read more

April 22, 2020April 20, 2020

The Zeego Tales: A Little Something Extra

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

April 15, 2020April 13, 2020

Keeping a Homebound Physical Therapy Routine

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

April 1, 2020March 30, 2020

My Family’s Legacy Is Centered on Grandma’s Cajun Food

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

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