Breaking the System of FA

Breaking the System of FA

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 wanted more of this feeling. I found a new goal in life: to always reach for the impossible.

It’s funny, the first time I felt this way, the act was so small and inconsequential that I could have easily forgotten it. I didn’t expect it to define the kind of person I wanted to be.

But never underestimate the influence of candy on a 9-year-old.

***

In my gymnastics class of about 25 preteen boys and girls, the small lollipops we received as a treat after class were mediocre at best, except for one flavor. The bright ocean-blue hue of the sucker brought smiles to our chubby faces. Blue raspberry was a treasure among the humdrum variety of the rest of those candies.

Just to underscore it, candy flavors are a huge deal to children. Even though it seems trivial now, the choice seemed so important then; important enough that the gym teachers who doled out the lollipops realized that we kids would argue and fight over the prized blue raspberry flavor.

Interested in FA research? Check out our forums and join the conversation!

The adults came up with a simple solution: They took all the suckers marked “blue raspberry” out of the bowl they presented to us after class.

It seemed a perfect system.

There was only one problem.

I wanted a blue raspberry sucker, and I was headstrong enough to take a chance.

When the bowl of suckers came to me, I searched through all of them for the ones marked “random.” I gauged the tint of each one through the wrapper. I chose a dark-colored one. I knew the risks: I could end up with a grape-flavored one, or worst of all, the brown root beer flavor.

Shudder.

I chose a random-flavored sucker just as my ride pulled up. I remember unwrapping the sucker quietly.

I looked down and saw a blue lollipop.

It was amazing.

I knew it wasn’t important enough to mention, so I kept it to myself. It was a little victory. I chuckled that others had tried to ensure no child got a blue raspberry sucker.

I stuck the forbidden flavor in my mouth. It tasted sweeter than normal.

I had done it. I had broken the system.

And this wouldn’t be the last time.

***

That Friedreich’s ataxia (FA) brings a lot of challenges to someone’s life is a gross understatement. With further disability and early death always leering, it’s easy to want to give up.

For most FAers, depression becomes a cyclical habit, a labyrinth we can’t escape.

I gave in to this habit several years ago, when seeing a general sense of sadness coming from many others in the online FA community.

I did something I was scared to do.

I did an internet search for “Friedreich’s ataxia life expectancy.”

I found the answer. The horrible, horrible answer.

According to this study from 2007, the average life expectancy for those with FA is 37.5. Just a few years away from my current age.

As expected, I was devastated. I think it’s a common feeling with FA. Hopelessness seemed a given, seemed systematic.

Wallowing in my misery, I remembered something. Something tiny and insignificant.

I remembered the taste of a blue raspberry lollipop.

The average life expectancy for those with FA is 37.5?

I refuse to live by that.

I choose to break the system.

Join me.

***

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.

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.
×
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.
Latest Posts
  • Zeego
  • Zeego
  • Zeego
  • Zeego
Average Rating
0 out of 5 stars. 0 votes.
My Rating:

4 comments

  1. Wanda White says:

    I was born with FA. I’ve seen and heard others with this illness go from denial to anger to not caring at all. I cannot and will not succumb to a life filled with despair. I too was told I’d be a vegetable by age 40. So I decided at age 17 I would be happy with FA. I deliberately chose to be happy, content with my feelings, smiling at people and life. I am now 60 years old, retired from work and enjoying the things I can do, instead of focusing on the things I cannot do. I don’t walk, I wheel. I can’t dance but so what. In 2010 I graduated college with a diploma from a three year study intensive Business Administration course. I enjoy working on my bio, ” Life with Ataxia”. I smile, make jokes and I encourage others to do the same. I am always “Number One”whenever I’m asked how are you? Positivity is where its at. LIFE is WHAT YOU make it!

  2. Barbie says:

    Thanks,for sharing. You are one of my favorite authors on here. I love your comparisons. I like when someone can talk about FA, and make me smile at the same time. The way you searched for that sucker is something I would have done!

    • Matthew Lafleur says:

      Thank you so much for taking the time to write this. This really makes me feel great. Living with FA and smiling while doing so is definitely tough but something I hope to inspire!

Leave a Comment

Your email address will not be published. Required fields are marked *