My Body’s Symphony

When you see me you see a picture of health. A young body. Eyes that shine through the pain. Even my doctor says, “So you’re healthy aside from your diagnosis of Ankylosing Spondylitis, so that’s good.” What an ironic statement.

I see a body in the mirror that looks like mine, but this is not my body anymore.  This body now belongs to someone else, it is a stranger’s body.2015-03-28 14.33.58

Look past my face.  Look past my beautiful face to the pain.  Slight outward signs, my physical insecurities, only wait for the trained eye to discover: discolored splotches of skin, a slight hunch, constant readjusting when seated or standing for long periods of time – indirect signs of a disease that causes far more insecurities than the clinical diagnosis on paper can possibly reflect.

Look at ME! Past the click bait, that fancy model pose that got you here. Here, a glimpse inside my twisted fate, my gnarly spine. I’ve got plenty of backbone, thank you, that leaves me in an ironically fragile state. Bone spurs take root and strike a nerve softly like the soft staccato of pianissimo on the baby grande, until my legs give way – the build up of a chord deep within (thudding along, a low F on the bass clef) until an avalanche of sound screams from within my joints. This is my symphony – all my cells screaming (begging), “Finale!” while the inflamed audience – the peanut gallery – screams, “Encore!” It must be raining today the way Beethoven has woven his angry Symphony number 5 in C minor through my body.  Or maybe Dvořák’s Symphony number 9 in E minor. Beautiful pain.

2016-01-02 12.18.19
My spine on AS

Sacroiliac lesions. Fused bone spurs. Kyphosis. Enthesitis. Iritis. Uveitis. HLA-B27. Disease evolution. Inflammation in the pelvis. Irreversible joint damage and deterioration.  Does this sound like internal leprosy? Internal combustion?

Here’s my own symphony, writing itself daily: a cacaphone of instruments that don’t blend – a constant, repetitive, onomatopoeic snap, crackle, and pop with a conductor throwing the score’s major melodies together with minor; heart-aching ballads of terror with infinite repeats of a chorus defined by cognitive dissonance.

This is my body, as strange as it seems.

The music in my body is terrifyingly beautiful. A Les Miserables on the grandest scale. A Phantom of the Opera – a kidnapping that holds my body forever captive in the dungeons of haunting arias unless my prince (a cure) dares to reach through the gates of hell, past the point of no return. My body fights the antagonist. This is a story of battle, a wicked piece to play – changing tempos, entire leaps in scales, mismatched melodies.

But there is also a beautiful counter-melody.  One of hope, strength, determination. There is harmony in the language of music, even in the darkest beauty. Find a composer to write the score of my sickbody and the world could understand a bit more the pain I endure.

Music speaks where words fail.

My body is a sympony.  An orchestra.  A musical. A Shakespearean tragedy. My body.

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