Making My Story Dynamic, Part II: Rewriting My Diagnosis Story

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by Matthew Lafleur |

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Second of two parts. Read my previous column here

I’ve been telling the same old story about my Friedreich’s ataxia (FA) diagnosis for more than 10 years. Maybe it’s time to rewrite it.

Like I wrote in my previous column, the facts of my diagnosis will never change, but how I perceive them and how I tell the story should shift over time, reflecting my own growth. Diagnosis stories are essential parts of rare disease patients. They are dependable indicators of how we view life, much in the same way that everyone’s earliest memories show how we react to the world, as famous psychiatrist Dr. Alfred Adler taught.

The story I’ve been telling myself reveals that for most of my life I lived in shame of flaws I had no control over.

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My diagnosis story begins during that hellscape of human development called puberty. Even though all I wanted to do during this time was to blend in, my first symptom of FA showed up — an increasing lack of coordination.

My physical limitations made me feel entirely separate from my peers. I didn’t completely understand that those flaws were because of FA so I blamed my physical regression on myself. It was my fault that my coordination and walking were getting worse. If only I were kinder, practiced playing sports more often, or prayed harder, then I’d beat FA.

Since high school, my diagnosis story doesn’t distinguish between the natural progression of FA’s symptoms and my own fault. Instead of mature responsibility for my actions, I felt crippling shame, as over time, I walked around without my wheelchair less often, required a chair to sit in as I took a shower, and installed a SuperPole at my bedside when I could no longer transfer into bed without one.

My future grew dimmer with each lost ability. Since no cure or treatment for FA exists yet, I realized that in the story I told myself, I was entirely a victim of FA.

But that’s not how I wanted my story to go.

Maybe because of the handful of good friends and family members who believed in me when I didn’t believe in myself, or maybe because my Cajun spirit woke up and realized “I ain’t no victim,” I decided to rewrite my story.

I recognized a chance when I landed a position at Friedreich’s Ataxia News and was given a blank slate on which to write about my life. I named this tabula rasa “Little Victories” as a way to reexamine my life. Instead of remaining hopeless and angry that FA continues progressing, still untreatable, and still killing people throughout the world, I’m learning to celebrate small, often-overlooked successes.

Devolving from an able adolescent to a dependent adult has undeniably left me with a few cracks. Having to reassess my abilities every few years and then rework the way I complete my daily functions has been intense and unavoidably depressing.

But realizing that FA is not my fault is invigorating, especially after all these years of blaming myself.

I wish my teenage self could have understood that I wasn’t alone in feeling this way. Even though the struggles FA brings seem really uncommon, everyone struggles with their own flaws. Many times people hide these cracks, but the truth is that we’re all broken — even those who seem perfect.

In Leonard Cohen’s words, “Forget your perfect offering. There is a crack in everything. That’s how the light gets in.”

Maturing is recognizing the imperfections in yourself and others, and loving others anyway. And also loving yourself anyway.

The question is, “Do I love myself?”

The answer is, “I’m working on it.”

So in this piece, the 147th “Little Victories” column, I am attempting to update my narrative of the same old diagnosis story that I’ve used previously. I strongly hope a treatment comes quickly, but even if one doesn’t, I’ll learn how to be OK.

Having FA is not my fault.

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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