A Departure From the Avett Brothers: My Body Is Not My Prison

'No Hard Feelings' by The Avett Brothers prompts a reflection on self-image

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by Matthew Lafleur |

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As I was getting ready for breakfast a few mornings ago and listening to a shuffle of random songs, I recognized one that I hadn’t heard in years: “No Hard Feelings” by The Avett Brothers.

For the first time in quite a while, the opening ran through my head, and on hearing the lyrics now, they gave me pause.

“When my body won’t hold me anymore,” Scott Avett croons, “and it finally lets me free, will I be ready?”

Avett expresses a common worldview, one especially familiar to me, that the truest parts of human beings are not physical; the only parts of us that matter are intangible, like our memories, personalities, intellect, and preferences.

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All that really matters is our souls, aka our spirits, aka our essences. And those “real” parts of us are imprisoned (or “held,” as Avett sings) by our bodies, our flesh prisons. Only when our soul escapes can we finally know true freedom, according to this mindset.

Amen?

But on this morning, while pondering those lyrics, I stopped brushing my teeth mid-stroke and listened.

“When the sun hangs low in the west/ and the light in my chest won’t be kept held at bay any longer …”

For most of my life, I’d nod along with this. It was easy to accept that my flawed physical body kept my inner greatness “held at bay.”

“That is bullthit,” I said, my mouth filled with toothpaste I needed to spit out and rinse. I was surprised by my strong reaction. Apparently, I really don’t believe my body is a prison anymore.

Friedreich’s ataxia (FA) made it easy to vilify my body. Instead of getting stronger and more confident in middle school, FA’s progression seemed to make my body betray me. I learned to distrust my body. (“Come on, you can make it to the front of the class without stumbling in front of everyone. Oops, guess not.”) And it was easy to gravitate to a philosophy that viewed my body as nothing more than a corporeal trap.

The real me was separate from my failing body. I found myself trapped in an ataxic shell.

After all, the real me doesn’t have FA, right? So I divided myself into “the real me” and “my body.” One side of me was the physical part, where FA resides. The other was the intangible part — my soul, my intellect, the part of me I saw myself as, untouched by FA.

Like Avett, I pined for the day when my body would “finally let … me free.” My body was my prison, and FA, the jailor.

A changing perspective

I didn’t expect to ever change this mindset, but the older I get, the less I discredit my body. Sure, FA greatly cripples it, but I’m learning that there is a difference between FA and my body.

With every day that passes, the more the symptoms of FA physically progress. But I am learning to notice the small ways that my body fights against it. To make up for my weakening lower extremities, my upper body compensates by being decently strong. I’m hoping to maintain my abilities as long as possible with a regimen of physical therapy, personal training, and exercise, and attempting to eat a healthy diet.

Most touching for me is when I hear my heartbeat during my annual cardiac checkup. My heartbeat sounds quite rapid, due to the strain of FA. But it keeps going, rapidly or not, keeping me alive.

My heart does its best, despite FA.

My body does its best, despite FA.

I do my best, despite FA.

Maybe there’s no difference in those three things.

All in all, I respectfully disagree with the mindset in The Avett Brothers’ song. My body is not a prison that I dream of escaping. My body, as aggravating and ataxic as it is, is me.

And if the Avetts read this, no hard feelings, yeah?


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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