An Open Letter to M&M’s Parent Company

Dear M&M’s,

As a longtime fan of your candy, I want to say thank you. Your candy-coated chocolates have been a positive memory for me since before I could walk.

The memory of my grandfather is forever tied to M&M’s because he gave me a brown bag of the plain variety every time he saw me, until his death when I was in high school. Overpowering the faint and not-quite-unpleasant scent of lingering cigarette smoke, the chocolatey smell of those freshly opened bags takes me back to a time of boyhood, innocence, and no worries.

But that time of confectionary innocence seems foreign now, more like a mirage than a memory. The coating of my youthful aloofness began to crack when I reached age 11. My tendency not to keep up with my classmates playing at recess or in a ballgame suddenly became impossible to shrug off as just a quirk. In a neurologist’s office in New Orleans, I received a diagnosis of Friedreich’s ataxia (FA).

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I’d never heard of it, but my family was told FA is hereditary, so they also tested my sisters. The youngest did not have it, but the middle child of my family, Morgan, was diagnosed with it, even though her symptoms were unnoticeable.

(You may be wondering, “What does any of this have to do with candy?” Well, hold on to your peanuts; I’m getting there.)

The beauty and the tragedy of a slowly progressing disorder is that there is no definitive line that told me “now I am disabled.” So denial was very appealing.

• I could no longer play sports. Well, I could focus instead on my schoolwork.
• I could no longer hike long distances in the Boy Scouts. Well, with a lot of prodding from my parents, I could still become an Eagle Scout.
• And of course, I did not identify as disabled. I cringed at the thought of seeing myself in the shoes of anyone in the world of disability, even others with FA. Seeing others more progressed than me, with slurred speech, poor hearing, or relying on a wheelchair, was terrifying.

Avoiding others with FA or any other disability was my pathetic way of seeing myself as able-bodied. It was the hard coating protecting my fragile self-identity and keeping it from melting. (I remember whom I’m talking to.)

An unfortunate but logical outcome of my stupid, selfish mindset was my relationship with my sister Morgan. At a pivotal moment when we needed not to feel alone, we avoided each other. And that is the definition of a self-fulfilling prophecy.

As I prophesied, I almost entirely excluded myself from anyone in the rare disease space. That led me to incessant loneliness and intense self-criticism. From high school to grad school, I was the only wheelchair user in my friend group.

I grew tired of being alone and unhappy and realized that by connecting to others in the FA community, I’d finally feel less alone. And maybe I could even try to do some good.

That decision, made in hopelessness, changed my life. I became familiar and involved with the Friedreich’s Ataxia Research Alliance and landed a job as a columnist for this website, Friedreich’s Ataxia News.

Suddenly surrounded by other people with FA and many other rare diseases didn’t leave me uncomfortable, as I’d assumed it would. Instead, it was empowering to draw on the solidarity of others in my community.

Even though we each have different challenges, all of us in the FA and rare disease community have much to learn from and teach one another. I’m sorry it’s taken me so long to learn that.

This is the part where M&M’s come in.

My first act to get involved with the FA community was forming a team to raise money for and participate in the rideATAXIA event. I named my team “The Fellowship of the Ride.” (I never claimed to be cool.)

I’m happy to report that since the team’s formation, my sister Morgan has become more and more involved with the ride and with the entire FA community.

Turns out, isolation doesn’t fit either of us well.

I propose changing my team name to “Team M&M” for me (Matt) and my sister (Morgan). I’d like to create my T-shirts for the ride in the color and design of your candies. What do you think?

M&M’s have been an endearing part of my early memories. I’d like my sister and I to represent M&M’s as we ride toward a cure for our untreatable disorder.

Ain’t that sweet?

(Pun most definitely intended.)

Sincerely,

Matt Lafleur

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.