Following this intimate series of portraits, writer and model Adamczewski reflects on her struggles with chronic illness and how modeling liberates her from pain
I would like to greet my body in the mirror, and know where she has been.
This morning. White fizzing behind my eyes as I lever myself out of bed, take the dead weight of my arm and schluck it back into place. Click the jaw back into place. My spine straightens as a piano with so many broken keys. As a child, I could fit through fences like a cat; unhook my skeleton and fold it up. It was games then.
A new, blue tenderness presents itself in a stripe across my thigh. Smaller bruises, mauve and grey, speckle my hands and stomach; one nestles turquoise-ish in the tender hinge of my elbow. The blood tingles in my temples. If that creeping, moist-mouthed nausea comes, I’ll lie back down.
It doesn’t. The day waxes. I click-clack-pop, hunch my shoulders, hold my breath, feel my heart trotting in my chest, forget to watch my feet. The pavement rises to meet me, my palm smarts. The light hums. People appear from nowhere to knock my bag off my shoulder, tree roots erupt through tarmac snatching at my toes. A flurry of pigeons, cars surging closer and closer, the sun glaring off their windscreens.
This assault is preferable to the unseen hours; sweating, slipping in and out of consciousness. Weeks of silence when sometimes I spoke out loud into the stale air to see if I could still conjure sound. My goldfish mouth opening and closing, little words escaping muffled in bubbles of breath. Hello Hello Hello. My lips moving like a newborn lost in milky dreams. The butterfly joints of my shoulders and hips flopping apart, cushioned by the downy duvet. Sleep expanding within me.
My condition—hypermobile Ehlers Danlos Syndrome—moves like the sea, with tides that gather it in close and deep and then release, letting it lap and cream against the coast. The most intense episodes are called flare-ups. The flattening out does not have a name, it is known by its namelessness.
The nameless time is not quite reprieve. I squint at the approaching crest, waiting. If it goes on too long, I worry that I was never really ill, that I made it all up. I have noticed that people living with chronic illnesses often experience this kind of inverted hypochondria. A niggling paranoia that they can’t really be ill, despite the daily intrusions of illness. This anxiety is inherently socially comparative—what if everyone feels this tired? What if pain in the marrow of your hip is normal? Making a record of my illness, telling other people about it, is such a relief. It is this way I learn to respect it. A symptom is somehow not quite of the illness, but of your own body’s performance of illness.
It is common, too, to regard your body as an adversary, like a cruel friend in school who you know you need but who is forever whispering behind your back. Mostly, I live in my body like it is a stranger’s flat, feeling my way along its corridors, sipping water out of murky pint glasses, trying not to make a sound.
I have modeled since I was a teenager, since I was first ill. I had always been hypermobile, but it had never caused me serious pain. I had always had nosebleeds, fainting spells, easy bruising, a sore stomach. It wasn’t until my late teens that I resented my body. Illness came over my body like a storm when I was seventeen. I was beset by an endless run of coughs that rattled and snagged, until my chest gurgled problematically with every breath. My lungs, like two dank purple clouds, flared beneath my ribs. The mornings came but my flesh felt tender and ripe for sleep. My blood felt treacly, loath to run to my extremities. And so I pulled them in from the edges of the bed, pulled myself into the deep centre of the mattress, into the damp, panting heat of the duvet. I bent my limbs and built them into a protective cage around my chest.
Throughout my developing illness, as my body has changed, lost its verve and mettle, modeling has given me a place for that body to play. A world in which my body and I work together. To be on camera, preserved, to be the image of a body without pain. I have learnt to look into the lens, my eyes widening, fiercely projecting myself beyond the confines of my body. To be shockingly, delectably, harrowingly present. In that moment, before the shutter clicks, the pain seems to lift away from me, like a breeze fluttering up a bed sheet and prickling your skin.
I meet her in the photographs. Our eyes meet.
