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.

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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.

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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.

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