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April's theme is
MOTHERS & SISTERS.
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“I thought you might know why when our bodies ought to bring surcease from our tortured minds, they fail and collapse; and why, when we are tormented in our bodies, does our soul desert us as a refuge?”
-Save Me the Waltz, Zelda Fitzgerald
She’s flying through Paris on the back of a boy’s bicycle, her body purring with rum and wine. They whiz past two young men near the Place de Concorde and she hears one call out, “Regard la belle demoiselle! Qu’elle est très jolie!” Her cheeks go pink but she can’t help but smile. She feels so beautiful, so free.
He’s looking at her like she’s the only woman in the whole world and his eyes are glowing, his hands running over her smooth softness, from the gentle curve of her waist to the messy silky soft halo of hair framing her face. “You’re so beautiful. I mean it, you’re so so so beautiful.” She believes him.
It’s the day of her college graduation, her face is red and splotchy and the shower she just got out of felt like fire. Her limbs are aching, walking is becoming more and more difficult. The day is hot but she’s cold, always with the chills, and feeling grateful for the thick green robe that’s going to cover her up, holding in warmth and hiding her battleground arms, wrists, chest. Her face, however, is red and hot and swollen and patchy and it will be on display, the pictures of today will be forever. She cries while she blow dries her hair. Later, she bites into a strawberry and it stings her lips. She sets it aside and doesn’t try again.
Usually it’s white. Sometimes it is yellow. Othertimes it’s red with blood. Sometimes it comes off in big thick chunks, like someone took a cheese grater to her wrist. Other times it’s soft and light like dust. Always it is awful. She feels ashamed and disgusted every single time she scratches and tears and it rains from her flesh. This happens anywhere from 15 to 500 times a day.
Her skin collects like sand on the floor of the room, building up in the corners, small white grits that crunch under shoes and stick to bare feet. It covers the bedsheet every morning, enough that when you sweep it all together you could fill a teaspoon, some days it’s a tablespoon. She leaves a black skirt on the floor of the closet and watches as the skin flies in the air and settles starkly on the fabric whenever she takes off her long sleeve cotton uniform to replace it with another. The skin builds up between the keys of her laptop, visible even in the dark through the glow of the keys. Wet dead skin collects at the roots of her hair, it’s in her eyelashes, in her bra, rains down from her legs when she removes her jeans. It coats the floor of her bathroom, her bedroom, her closet, her car. It covers the booth at restaurants when she gets up to leave. It collects on her desk at work and covers the floor underneath her chair.
Her parents don’t believe her. Her father calls her, “Sometimes we have to do things that are hard.” Her whole life has been building up to this, to her new job and new life waiting on the other coast. She crawls into bed and pushes her face into the pillow. Her skin prickles and buzzes, begging her to tear off just one more layer, then one more, then one more. When she manages to pull herself away, the pillow is dotted with blood, fresh and red.
Later she sits across from the boy, he gently pulls back her shirt to reveal her wrists, torn to pieces by her own nails, the skin so fragile, wet, and thin that it comes off it huge painful tears. She feels exposed and vulnerable and she starts crying again, the shame multiplied because he can see her and watch her, her at her most vulnerable and helpless. She used to be strong and resilient, capable of anything. Now just being looked at, actually looked at, triggers a breakdown. She hates this new girl living in her body.
"Next time your friends tell you to wear sunscreen you'll do it, won't you?" The old man is scowling at her, his tone is aggressive; he's mad at her and her bright red face. She doesn't know how to respond - he's not the first customer to comment on her skin at work but he is certainly the most aggressive.
"I don't have a sunburn." she replies in monotone, trying to hide how upset she is. Today was a good skin day, or so she thought.
"Oh what, so you have a condition?"
"Something like that."
He pays for his movie and walks away, clearly feeling uncomfortable because of his mistake. She takes a bathroom break and cries quietly, trying to pull herself together. She steps back behind the register.
"Hey, are you okay? Your face is all red, did you get a sunburn?"
She has an appointment, her mother booked it and it’s already paid for. She has to get out of bed and put on clothes and nothing has ever sounded more impossible. She stands, she stumbles. The skin behind her knees SHOUTS and burns and resists the movement, every step is stinging and burning and tearing torture. Her arms her neck her stomach - they are all the same. She can’t even walk. She hobbles like an old woman, leaning on her sister. She starts to bend over to change and cries out. It’s impossible. She keeps trying and pushing and hoping until she’s ordered to stop, to get back into bed, to stop trying. She gets back into bed and doesn’t get out for a week and a half.
It’s 4:30 in the morning and she is lying on the couch. The thick stench of iron and metal comes off her face, in between her eyes, under her nose, under her mouth, all across her cheekbones, emanating from the thin yellow fluid oozing out of her, slow and steady, determined to ruin her. It soaks the pillow (staining it permanently) and in the morning she has to forcefully unstick the sheet from her cheek. The fluid pours out of her and the torment is not so much the constant dampness, the wet shiny patches that chill her burning bright red face when she catches a breeze from the fan, it’s the smell. That awful strong thick ever present impossible to escape reminder that she is broken and disgusting and ugly and completely useless. It keeps her from sleeping, she tries her best to lie down in the quiet dark but it’s the middle of the summer and so so hot, her sweat burns and her face oozes and she finally passes out from exhaustion the next morning at 8am, only to awake by 10 in pain, exhausted, worn out from it all.
She is in another level of hell and she’s afraid of what she will do if it comes back and never goes away. Those nights end after only a few days but the fear of the stench and the sticky fluid and of those hot hellish nights sits haunting in her mind and thinking about it too much will always make her shake and cry.
She is sitting alone in her car looking into the tiny mirror on the back of the driver’s side visor and sobbing. She’s in a crowded mall parking lot and people are walking by and staring but she’s so focused on the disfigured choppy mess of a face looking back at her that she barely even notices. The hot tears sting her skin as they slide down her face, the salt mixing into the miniscule cuts and tears, burning and stinging and always always always itching. She rubs her eyes to dry them and she rubs and she rubs and she rubs and she feels the fragile skin tearing and burning and coming off in her palms and she begs herself to stop, crying even harder. She restarts the car and drives away without even getting out.
She’s lying on her side, staring at the wall. Her skin hurts but her soul hurts more. She feels dead and empty inside. Her face doesn’t move, her eyes don’t tear up, her body is listless and heavy. Her boy tries to rouse her, talk with her, feed her, help her. She can’t eat, food tastes awful and she spits it out, she hasn’t laughed in days, her smile is weak and fake, she can barely speak. She thinks that this must be what it’s like to feel like dying.
He tells her she is beautiful. She doesn’t believe him.
She’s standing in the shower and smiles because the water doesn’t burn as it jets onto her body, which is shaking with nerves (more often than not a shower is torture). She runs her hands through her hair and it comes out in clumps, stuck in between her fingers, long strands of dark hair clinging to her fingernails. Her skin might not hurt but she cries anyway, mourning the loss of her long dark pretty hair, the last pretty thing about her. A week later she cuts it all off.
She sits on their little balcony with a book and hot cup of coffee, breathing in the foggy November afternoon. The cool wet air feels like silk on her tattered arms, her breathing is easy, the seemingly tireless itch has gone away for a little while. Even in her peaceful moments she thinks about her skin and everything that’s been taken from her. She’s cried more in the past year than in the 21 years preceding it. She puts on some music and breathes deeply, reminding herself that it’s okay to mourn.
In September of 2013 my dermatologist prescribed me a heavy regimen of topical corticosteroids that were meant to keep my eczema under control. Over the next six months I used them regularly and after some initial improvements I just kept getting worse and worse. My dermatologist responded by putting me on Prednisone, prescribing a Cortisone injection, and of course giving me more topical steroids. Every time my skin would clear I’d be walking on air, thinking I was healed. Then the rebound would arrive, worse every time.
I stopped all topical, oral, and injected steroids on April 1st, 2014 after months of unexplained suffering because nothing made sense anymore. The medications my doctors prescribed me were meant to improve my condition and instead they made it a thousand times worse. When I stopped the steroids my body began Topical Steroid Withdrawal (TSW), a process which can last anywhere from 8 months to three years. In the beginning, my parents didn’t believe me and my doctors didn’t believe me and it took me a very long time to begin to believe myself. I have struggled and continue to struggle with shame and guilt, the feeling that if I only tried a little harder I could go to work or I could take a shower or I could get out of bed. The feeling that if I had ignored my doctors’ medical advice, my life would still be normal.
I need the world to understand that when I talk about terrible moments and pain and shedding and shame, I’m not talking about one or two or five bad days, I’m talking about hundreds, one after the other after the other. I’m still in the thick of TSW and even though I’m getting better, I have a lot of bad moments too.
Someday those hundreds of days and nights will go fuzzy and fade, change themselves into memories instead of nightmares. Someday my life will be normal again and I will run, sit in the sun, stay up all night on purpose, dance in a sweaty crowd of people, paint my face, cuddle under the covers.
"there were a lot of nights
i thought of how nice it would be
to stop my lungs
to still my heart
so i could return to the earth
and all the stars
but what a mistake it would have been
because i can tell you now
after the rains stop
and the storms pass
and the light peeks in through the darkness
that the flowers bloom
in ways i've never seen
wearing colors brighter than the sun"
- Tyler Kent White
Below are photos submitted by the author depciting her TSW. Photos are graphic and can be triggering.