My Diagnosis Isn’t the Entirety of Who I Am

An old tree once stood beside a creek far behind my childhood home. It wasn’t on my family’s property, but because wild blackberries grew there, I was willing to trespass to get to the ripe berries.

After eating a handful of them, I’d rest my back against the old tree and watch the creek. But I had to be careful that my back didn’t land against the end of a rusty pole that poked out from the middle of the tree’s trunk.

Long ago, the pole was stuck in the ground to mark the edge of a property line, and the tree began to grow near it. As the tree grew, the pole became an inconvenient obstacle. But the tree managed to grow around it, and even to rely on it for extra support.

Yet while the tree adapted, it still remained a tree. The pole didn’t define its true nature.

Like that tree, people with a debilitating condition like Friedreich’s ataxia must continue to thrive as long as we can.

Whatever obstacle that might be in our path, whether it’s Friedreich’s ataxia, another progressive disorder, or some other difficulty entirely, may we be able to continue growing despite it. After all, we are made stronger by the challenges we face.

I didn’t always think this was true. In my teenage years, my greatest fear was that my life would be defined by my debilitating diagnosis. As my ability to walk began to decline due to the effects of Friedreich’s ataxia, I wondered if it defined me as a victim of a genetic defect and a life-shortening illness.

Fast-forward 20 years, and here I am, typing out my weekly column about living with a rare disorder. I do that because I hope to advocate on behalf of those with FA, and to raise awareness for funds and research to cure it.

I am lucky I don’t have any life-threatening effects yet. Many others have witnessed firsthand FA’s destructiveness.

Still, I’ve learned that there is a difference between being passively defined by an obstacle I face, and growing despite something in the way.

Facing whatever challenges that lie in our path instead of hiding from them makes us stronger.

My name is Matt, and I’m a patient with FA. But there’s a lot more to me than that.

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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.