It Doesn't Show

It doesn't show, they started to say after the surgeries.   This should have been a cure for shame, and maybe it was, but it also produced a new problem.   A deep and integral aspect of my personhood became invisible and unknowable. Don't look. Juvenile arthritis is a peculiar and defining experience.  As a toddler, you get braces and casts instead of the exhilaration of walking.  As a kid, you get the special  role in the ballet recital.  Then, as your wrists are progressively deforming, Phys Ed with its impossible pushups and volleyball falls by the wayside.  You are left with the other rejected kids in Choir and then in Drama Club, where, to vanquish your depression, you pledge yourself a career and vengeance.  The twist (pardon the pun) in the story is that, along the way, you fall in love with dance--the one thing that everyone agrees is totally out of the question.  These are not normal knees! scolds the famous rheumatologist, when I complain of pain from tap dancing.  If they could see your x-rays..., clucks another, watching me work the floors as a medical psychologist after I finally abandon the performing arts, along with that vengeance thing.

But then I got old.  Old and lucky.   Old enough to say To Hell with Advice Like That!   Lucky that certain medications were invented that actually work.   So now I am an old woman with arthritis in dance class.  Not a big deal.  Except that I am not an Old Woman with Arthritis!!!   That is not who I am, Dammit!   I am a Heroic Kid determined to overcome an unusual obstacle.  So, I take myself to DisThis Films, which spotlight disability.  I take a workshop in disability and dance, and the other participants keep looking at me trying to find the thing that is wrong with me.  I decide to expose the issue and ask if I belong.  The hilarious teacher, Bill Shannon, reassures me that I can stay but I have to sit at the back of the bus

So, who am I?   A perpetual outsider addicted to belonging, primed for identity politics but lacking a discernible identity.   I don't quite belong with the Crips, not quite with the Jews (long story), not quite with the young dancers, not quite with the age-appropriate psychologists, not quite with the artists.  Who am I?   This is my koan.  This is dukkha, the squeaky suffering of the wheel that doesn't fit.   Of course you know the cure.  Tell me again.  And again. 

October 2010

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