Reconciling Disfigurement with Inevitability.
It starts as a bruise.
Or so I think — it has the shape of a bruise, but the colour is faded, light brown, and pink. It’s enormous, it covers my hip and reaches around my back, like a handprint. In certain lights, the skin seems luminescent, a slick, pearly sheen. My patch of mottled scales. I’m transforming — fantastical, magical, dangerous.
“Huh.” I say. And I ignore it.
I don’t have a very good visual imagination. My sense of object permanence is inconstant, even weak. Things just don’t stay in their boxes. When I undress at night, I see that my scales are brighter, the bruises around it are darker, the skewbald scar creeping further around my hip. I put my two hands over it and watch how it escapes; rebellious smudge, dragon skin. I get dressed again, and it vanishes.
I start seeing a boy who never quite knows if he wants me or not. When he does, I am vibrant. When he doesn’t, I am blind. One evening, he touches my hip, warily running the back of his hand up and down the pearly scales, tracing the edges of the darkening stain.
“Is that a birthmark?”
“I don’t really know what it is.” I laugh, uncomfortable, discomforted, sensing disgust. (I can never tell if this boy likes my body. He is enthusiastic-reluctant, always).
I roll over, kiss him, it is hidden again. I’m ignoring the slow decay of a lot of things, it seems.
I take photos all the time. I constantly wonder ‘is that me?’, ‘is that what I look like?’ I marvel at the shape of my face in videos, with its range of motion, its rubber expressions, reforming and remoulding, emotive and free.
In the middle of my back, a new patch of scales begins to form. I am sick a lot. I go to the doctor, and she traces my scales, too, baffled by their solid, stubborn existence. The new patch doesn’t hurt, either, it isn’t itchy or difficult, it feigns permanence, a birthmark imposter. I get referred elsewhere, to a different, fancier hospital by the bridge. In the meantime, the mark on my back grows, sliding down my back, grey and brown and bruised, softly inevitable. The fabric of my body is fraying.
A cruel voice in my head wonders if I can still be beautiful. An idle voice wonders if I might grow wings.
A month later, my mother and I wait for the specialist at the hospital in Chelsea. Neither of us will admit our nerves. We’ve both probed the internet for any indication of what it could be, absorbed horror after horror, the worst, most ridiculous way of coping. It’s a form of superstition, I suppose. If we have an idea of what we’ll hear before we hear it, we can stand the blow, we can compose ourselves in anticipation, sort our emotions neatly, label the boxes, go to work.
The specialist is comically tall, and obviously kind. It turns out that I’ve met him before, his daughter and I attended the same primary school. My heart is beating hard as I follow him to his office, aching with its own breathless echo. He pulls at the patches with cool fingers, pinches the skin, moves the joints. I don’t look at Mum, and she doesn’t look at me. After half a minute, he pulls my dress back into place.
“I know what it is.”
I blink, bracing for a blow. He explains, gently, as I look out of the window of his office at the park, and the Thames, the man in bright blue Lycra on his bike, twisting past the buses. I am crushed and relieved, all at once.
Morphea. It sounds elegant, like the name of a Greek goddess. He scrawls the medical terms in illegible script, but I get the gist, his voice registering dimly. It’s a disfiguring auto-immune disease, he tells me, grimacing apologetically as I cringe at the phrase. He describes bewildered lymphocytes, looking for infection that they will not find, the over-producing collagen cells, scarring me for safety, working against me but also for me, ferociously protective. In morphea’s gentlest incarnation, you might develop one small scar, called a plaque, which ‘burns out’ after a few years. In its most severe form, scleroderma, your internal organs also scar, a slow death. The specialist makes us promise that we will not google it for a week. “You’ll only scare yourself”, he warns. My mother nods obediently, already pulling out her phone.
I test for a middling form of plaque morphea. I am going to scar, parts of me will harden into a delicate leather, but I am safe, in body. It isn’t fatal. But that evening, I cry shuddering sobs into my pillow, clutching a tube of steroid cream, and I am deeply ashamed of myself. I am fine, I have avoided scleroderma, what’s a few scars? Friends of mine bear far greater burdens with equanimity, and here I am, throwing a tantrum over a burn mark. I will not die. All the rest is just ego.
It takes a summer of patience, to bear this new landscape, to become familiar with my shifting skin, to accept that when I throw my right hip forward, it doesn’t quite extend as far as the left, that when I look at my body my eyes are drawn to the spreading scars. The steroid creams help, a little, even though they thin my skin to the point of unbearable tenderness. At points, the marks seem shrunken, even faded. But another patch starts on my neck the day that I return to university, a new tendril joining the large one on my back, and the connection is tender, a tiny brushstroke between the two plaques. The one on my hip curls around little further. Every day I look to see where they go, I bear inquisitive questions with outward calm. I was not kind to my body before this, but forgiveness is a process and so I thank it for its effort. I am surprised by how relieving it feels.
I will not mind my patches. Femininity, smoothness, flawlessness, perfection, these are still things that I wrestle with, reconciling disfiguration with inevitability. But the moon, too, is cratered and changed. I am going swimming this afternoon, and I will hold my breath and move my marbled body through shifting water, and I will try to marvel at what it can do, not how it looks. I tell myself that beauty is not, never-was-never-will-be, about purity, about external egos, about other people. If I transmogrify into a strange, scaled, otherworldly creature, well, so be it. Our interior lives are vivid, equally scarred, our bodies external vessels made to carry them. Sometimes I believe it, sometimes I don’t. Either way, I keep moving.
(picture credit @ Will Bowles)
