Posts by: Matthew Lafleur

Matthew 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.

July 17, 2019July 15, 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, 2019July 8, 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, 2019June 28, 2019

The Zeego Tales: From Florida to Louisiana

Columns, Little Victories - a Column by Matthew Lafleur

Zeego mumbles in his sleep. As I type this, he is on the floor beside my computer desk, woofing quietly and moving his legs and paws slightly. I grin, ... Read more

June 26, 2019June 21, 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, 2019June 17, 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, 2019June 10, 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, 2019June 3, 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 ... 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

March 20, 2019April 5, 2019

Death, My Constant Companion

Columns, Little Victories - a Column by Matthew Lafleur

Sitting at my computer in my room, I barely noticed that everything had gotten dimmer. It wasn’t until I looked up that I noticed that one of the four ... Read more

March 13, 2019March 29, 2019

Decompressing from Life’s Complexities on a Lazy Sunday

Columns, Little Victories - a Column by Matthew Lafleur

  I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing ... Read more

March 6, 2019March 19, 2019

I’ve Learned to Face My Reality While Hoping for an FA Cure

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom ... Read more

February 27, 2019March 12, 2019

An FAer’s Reflection on Rare Disease Day

Columns, Little Victories - a Column by Matthew Lafleur

The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood was thankful. The details of that Sunday night in 2018 may have ... Read more

February 20, 2019February 27, 2019

I’m Both an FA Patient and a Cajun During Mardi Gras

Columns, Little Victories - a Column by Matthew Lafleur

I find it easy to identify myself as a person with Friedreich’s ataxia (FA). In light of the significant effects that FA has on my life, I have no ... Read more

February 13, 2019February 22, 2019

The Anchor on My Wheelchair from My Steadfast FA Friend

Columns, Little Victories - a Column by Matthew Lafleur

A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with hand-painted white letters: “Cure” is written down the anchor’s stem and “FA” ... Read more

February 6, 2019February 13, 2019

In the Waiting Room with FA

Columns, Little Victories - a Column by Matthew Lafleur

Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused ... Read more

January 30, 2019February 1, 2019

Sometimes FA Makes Me Want to Be Invisible

Columns, Little Victories - a Column by Matthew Lafleur

Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being almost invisible, whether I was pretending to be a spy or playing ... Read more

January 23, 2019January 31, 2019

I’m Right Where I’m Supposed to Be

Columns, Little Victories - a Column by Matthew Lafleur

This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death ... Read more

January 16, 2019January 23, 2019

Introducing the Friedreich’s Ataxia News Forums

Columns, Little Victories - a Column by Matthew Lafleur

BioNews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, ... Read more

January 9, 2019January 24, 2019

‘Bird Box’ Is Worth the Hype, Especially for the Disabled

Columns, Little Victories - a Column by Matthew Lafleur

Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s ending. If you like suspenseful sci-fi movies, I recommend watching it first, then returning ... Read more

January 2, 2019January 23, 2019

A New Year’s Resolution I Can Keep

Columns, Little Victories - a Column by Matthew Lafleur

“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm assault on social media. As the calendars mark another complete orbit ... Read more

December 19, 2018December 17, 2018

A Little Gift from ‘Little Victories’

Columns, Little Victories - a Column by Matthew Lafleur

Writing this column has really been a joy for me. A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of finding a ... Read more

December 12, 2018February 20, 2019

Surviving the In-between Moments

Columns, Little Victories - a Column by Matthew Lafleur

On any typical day at my middle school, the closer you were to the bench, the higher your social status. It was a cheaply made concrete bench, painted over ... Read more

December 5, 2018January 23, 2019

Introversion as an Excuse

Columns, Little Victories - a Column by Matthew Lafleur

Sometimes I use my introversion as an excuse. It’s safe and secure; it’s familiar not to expose myself to unfamiliar situations. I find safety and comfort in familiarity. “So what ... Read more

November 28, 2018November 26, 2018

Finding Reasons to Stay Alive

Columns, Little Victories - a Column by Matthew Lafleur

Drowsily and with great effort, I hoisted the top half of my body upright in the hotel bed. Before I drifted off, I groggily but sincerely asked my friend ... Read more

November 21, 2018November 22, 2018

I’m Burning but Not Burnt

Columns, Little Victories - a Column by Matthew Lafleur

There is something magnetic and almost hypnotic about a bonfire, I thought, as the unexpected snap of a burning stick spooked us all. My small cluster of shadowy friends ... Read more

November 14, 2018November 9, 2018

Where the Heck Is Matt?

Columns, Little Victories - a Column by Matthew Lafleur

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 ... Read more

November 7, 2018November 6, 2018

Vacation Endings and Beginnings

Columns, Little Victories - a Column by Matthew Lafleur

Last in a series of reflections on a recent vacation to Turks and Caicos. Read previous reflections here. “I began my vacation today,” Jake told me over video chat. That lazy ... Read more

October 31, 2018October 30, 2018

The Caribbean Was the Perfect Spot to Set Aside My Fierce Independence

Columns, Little Victories - a Column by Matthew Lafleur

A continuation of a series of reflections on a recent vacation to Turks and Caicos. In this column, I take a rainy boat ride and am confronted by my ... Read more

October 24, 2018October 30, 2018

Sunny Days on Vacation with My Nephew Jace

Columns, Little Victories - a Column by Matthew Lafleur

In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with ... Read more

October 17, 2018October 16, 2018

The Mother of Vacation Origins

Columns, Little Victories - a Column by Matthew Lafleur

In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with ... Read more

October 10, 2018October 9, 2018

Reflections on My Vacation to Turks and Caicos: Traveling Ain’t So Easy Anymore, Thanks to FA

Columns, Little Victories - a Column by Matthew Lafleur

First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped seat of the plane, nothing ... Read more

October 3, 2018October 1, 2018

Learning to Live in the Present

Columns, Little Victories - a Column by Matthew Lafleur

“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; ... Read more

September 26, 2018March 29, 2019

The Algebra of Dating with FA: The Ex and the Why

Columns, Little Victories - a Column by Matthew Lafleur

“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing ... Read more

September 19, 2018September 17, 2018

Daydreaming and Other Ways of Coping

Columns, Little Victories - a Column by Matthew Lafleur

“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call you by name/I will share your road.” –Mumford & Sons. “Matt?” my professor repeated for ... Read more

September 12, 2018September 10, 2018

FA Progression and Childhood Spies

Columns, Little Victories - a Column by Matthew Lafleur

In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but with no inclination to steal. So, not burglars; we were spies. Spies! My aunt and ... Read more

August 29, 2018August 27, 2018

I’m Still Pedaling to Keep My Oath

Columns, Little Victories - a Column by Matthew Lafleur

I gritted my teeth. The August sun in south Louisiana pounded unrelentingly onto my head. Drops of sweat trickled down from my hairline, along the sides of my face. ... Read more

August 22, 2018August 20, 2018

Finding the ‘Why’ and Bearing the ‘How’

Columns, Little Victories - a Column by Matthew Lafleur

Reminders of life’s beginning and end kept cropping up unexpectedly this week. My 4-month-old niece was baptized, initiated into her parents’ faith, and began a journey. Days later, I ... Read more

August 15, 2018August 14, 2018

The Day I Began Tracking My ‘Little Victories’

Columns, Little Victories - a Column by Matthew Lafleur

In an instant, my plans and dreams vanished; I was left wandering through life with no set future, and it was scary. I can remember parts of that day ... Read more