Poetry and My Rare Disease: What Rhymes With Ataxia?

What unstructured poems can teach us about life with FA

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by Matthew Lafleur |

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Poetry has always been pivotal, even crucial, to my life’s journey.

Maybe that’s fitting for a guy diagnosed with a rare disease. In one survey from 2017, only about 12% of adults reported reading poetry in the last year. My disorder, Friedreich’s ataxia (FA), affects 1 in 50,000 people. Therefore, the odds of an FA patient valuing poetry seem negligible.

Even though I was attracted to poetry long before I knew the words “Friedreich’s ataxia,” poetry and FA now seem to be intertwined. They’ve both fundamentally shaped who I am today.

Nursery rhymes

I’ve been captivated by poems ever since some singsongy nursery rhymes and “A Visit From St. Nicholas” burrowed into my little brain. The structure and rhyme made them easy to memorize. Plus, it made me feel special that I knew the names of Santa’s reindeer as a toddler.

Armed with this childhood definition of poems — structured writing with lines ending in rhyming words — I was totally prepared for the fourth-grade assignment to write a poem. My silly poem was about a frog named Hippity Hop who sat on a log eating bugs and sleeping under rugs.

Eat your heart out, Shakespeare.

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Along with (most of) “A Visit From St. Nicholas” and “Hippity Hop,” I mentally archived Robert Frost’s “The Road Not Taken,” Edgar Allan Poe’s “El Dorado,” and many songs and commercial jingles from the late 1990s and early 2000s.

If you ever want to send a letter to Stick Stickly, Scruff McGruff, or “Unsolved Mysteries,” I’m happy to share the addresses.

My head is a junk drawer containing little of value.

Nothing rhymes with ataxia

I relished the comfort and predictable rhymes of the poetry I knew, but my FA diagnosis made reality uncomfortable and unpredictable. I learned that there was no rhyme or reason to FA. Will I be able to balance this bowl of chili on my plate in the cafeteria? Can I walk up these steps without falling? When will it be time to use a wheelchair? How long will it be until FA kills me?

Frustrated that these questions had no real answers, I longed for structure, predictability. In high school, I’d take a pen and a gray notebook to my backyard and sit on the grass. (I really miss sitting on the grass.)

There, I wrote bad poetry. These poems ended in rhyming lines, as I believed all poems should. Like the emo bands I admired, I tried to find poetic meaning in a sometimes hopeless, sometimes hopeful, always unpredictable world.

A new type of rhyme

Later in high school, I was introduced to new kinds of poems — unstructured, nonrhyming, free verse, and even narrative ones. They didn’t fit into my definition of poems.

I remember finding “The Emperor of Ice-Cream” by Wallace Stevens in a horror novel by Stephen King. It wasn’t similar to the poems I knew (it only rhymes a few times!), and I wondered why King had included it. Even though it didn’t fit my definition of a poem, I read and reread it, becoming enraptured by its juxtaposition of the temporary versus the eternal: “Let be be finale of seem./ The only emperor is the emperor of ice-cream.”

As I read more poems that didn’t rhyme and were written in varying formats, I realized that poetry has no standard form and rhyming is unnecessary. Poems use words as building blocks to express a message, beyond what descriptive text could impart.

That definition of poetry is relatable to living with FA. Since there’s no standard for FA patients — when we transfer to a wheelchair, when we lose independence, and even when FA kills us are almost entirely out of our control — we realize sooner or later that there’s no way to sculpt order out of this random progression.

It’s ironic that it’s only when we stop trying to find order in the unpredictability of FA that we cherish life more fully. Even when it isn’t predictable and doesn’t rhyme.

As Robert Frost wrote, “Two roads diverged in a wood, and I —/ I took the one less traveled by,/ And that has made all the difference.”

I often recite this to myself when FA feels like a lonely journey.

Maybe one man’s junk drawer is another man’s treasure chest.

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.


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