Tuesday, January 26, 2016

I feel like I’m letting my heroes down

 
I'm a musician who can't play music anymore. I feel like I'm letting my heroes down. - The Washington Post

 

These kinds of stories are so popular that activists and scholars have coined the term "supercrip" to describe them. Colloquially, we might call it "inspiration porn."

Unfortunately, they obscure an important truth: Sometimes, suffering doesn't make us better artists. And that's okay. Acknowledging this un-glamorous fact may actually yield wisdom of a different stripe, wisdom about what it means to be wounded and fallible, yet unapologetically human.

... As much as I would've hoped to find some inspiration in pain, it hasn't panned out. No overcoming narrative, no virtuosic courage. But it wasn't for lack of trying.  ... It was just one more thing excised from my daily activities, one more broken luxury in a life falling silent. The more I've felt pressured to rekindle my love for music, the more dejected I've become in failing to do so.
 
... Because inspiration porn — like any porn — isn't always grounded in reality, instead propping up stratospheric standards of beauty, stamina  and narrative intrigue.

Not everyone gets to be a hero. Some people barely manage to hold on. So from time to time, let's tell certain illness and disability stories as they are — even if they don't come with the superhuman protagonists or stirring soundtracks we so crave.

* * *
I refuse to try to be SuperCrip.  I didn't run marathons when I was healthy; I don't intend to start now.
 
I've had days -- years -- where just getting out of bed took as much out of me as running a marathon. 
 
"Just one more thing excised from my daily activities" -- I was diagnosed in 1988, and over the next dozen years one enjoyable thing after another had to be removed from my life in order to keep making it through the workweek, until I was down to work and hygiene.  Even eating and tidying sometimes had to be skipped in order to keep working.  But I didn't get called SuperCrip for that.  I didn't even get called SuperCrip for figuring out how to work from home flat on my back in bed when I was too sick to sit up.
 
No, to be SuperCrip you have to do something that even healthy people find difficult.
 
What I was called was rude names for not being able to keep the house spotless when I was bedridden.
 
The truth about my story is that everyone and everything I was told I could rely on abandoned me.  Friends were always "too busy" to even spend a few minutes bringing me a sandwich. In 16 years, the only time a neighbor ever brought food, it was a few party leftovers that wouldn't fit in her fridge, and I had to turn down most of them because of my allergies.  Prayers didn't produce a miracle cure, or even a doctor who had a clue -- the best I was able to do, after several years of searching, was one who was willing to listen when I tried to educate him.
 
If you're coming here looking for inspiration porn, look elsewhere.  My only superhuman feat is continuing to muddle through life alone and without help from any of the people I was told I should turn to for help.  Even my church refused.

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