Oakland. Beneath a green canvas awning, haphazard handprints swipe arcs across the dusty windows of the studio. I admire the kaleidoscope of spray painted shapes dancing over the walls, in stark contrast to the plain canvas of the cloudy white sky. Anastasia greets me wrapped in a towel and we sit together, drinking our coffee and tea in communion. The conversation is easy in places where I imagined it might be hard.
Upstairs, in the studio, the dog-eared leather furniture is worn comfortably shabby. Taking my clothes off is simple; I lost the intimacy of my own nudity beneath hospital gowns long ago. This is my body, broken for doctors to examine. Only when I peel off my eyelashes and wipe away the scarlet pout of my lips do I feel naked and armorless as a saint at the stake.
I live with a degenerative disease called Ehlers-Danlos Syndrome. My body creates collagen incorrectly at a genetic level. Collagen is the brick of the walls that make up the body and the mortar between those bricks. The mortar joints of my bones and muscles are weathered and decayed, black hole voids that even the most delicate repointing will never fix. I am shattered stained glass and a darkened sanctuary where only sinners worship.
My body may be me, but it is not my own.
The wide chair cradles me, a leather sedile, the cushion sagging in the middle from the weight of all the bodies it has enfolded. Ivy climbs white walls like banners, ferns stretching fronds to brush delicately across the bare skin of my shoulders. I cannot find a comfortable way to sit, but I am not uncomfortable in Anastasia’s presence. We talk, she and I, a confessional comparison of our wounds, long-since scarred over. A blush stipples across my chest as the heater hums, the heat rash raising the ink of my scattered tattoos into a tactile morse-code. I run my fingers across their line, their color familiar but the reaction of my skin unpredictable. The tattoos are a form of dominion over a body like an uncontrolled demolition.
The clicking of her camera lens twines into the creaking of my bones until they both blur into a background hymn. I am exposed, torn down to the bare basics of myself, the pieces that I usually hide. Somehow, Anastasia’s presence doesn’t make me feel like I should slip between the nearest shadows, splaying my searching fingertips over my dislocations as if each misplaced bone was a prayer bead as I hide.
After we finish shooting, I hold a single leaf between my thumb and forefinger, the lushness of its color like the California hills blooming to life after the cold rains of winter. Watercolor patches of deep green are painted between veins dark as dried blood stigmata, stretching out from the midrib. At its base, a new leaf curls in tight spirals, tissue-paper transparent and thin as gold-leafed onion skin pages of the family bible. I absently run the tip of the verdant bloom across the ink tattooed across my knuckles and forearms and feel a quietly powerful sense of connection - to Anastasia, to the plants, to myself.
After Anastasia finished taking the photos and collected the ones she liked best, she shared them with me. then she messaged me to ask if it was okay to put them live. “I knew you were sick,” she explained. “but you look sick in these photos.”
And she’s right. I do. I look like skin and bone hung on an uneven frame. gaunt, almost. washed out, except for where I’m red with mast cell reaction. my chin is speckled with deep cysts - I’d had a reaction to changing my makeup.
On one hand, the idea of sharing the raw intimacy of illness is hard. scary. this is what I truly look like, late at night, by myself. this is how ehlers-danlos has ravaged my meatcage.
On the other hand, there is a fierce stubbornness in sharing. forcing people to see. you tell me to my face I don’t look sick? here’s the fucking proof. look at me the wasteland of my body laid bare for you and tell me I look like a healthy human.
I would love it if I could perpetually put forth photoshoots of myself always glamorous and beautiful, but that’s not reality. that’s not ehlers-danlos syndrome. that’s not me. #EDSAwarenessMonth