I can remember parts of my story before the dark sets in again. I know it was 2014; I know it was the end of autumn and the sky looked like a faded photograph. Almost all the trees were naked, and the few leaves that were left had traded their warm orange coat for a brown tattered one. I lived on Gladstone Street, above a coffee shop. In the mornings, the loud music from downstairs and smell of dark roast would call me to consciousness. That morning I slept in, curled deep beneath the warm blankets until my alarm shook me into day.
Outside, it was cold. The winter air kissed everywhere it could reach. My cream-coloured mittens and blue petticoat jacket weren’t just stylish, but hid the hundreds of coffee stains I’d acquired over the semester. I’ve always appreciated the added bonus of something being comfort and stain proof while still throwing style. There were rows of old colonial homes, an elementary school, the grass field stiff with the frost from the night before. I was haphazardly sip-spilling coffee, speedwalking to the bus stop as the large arteriovenous malformation (AVM) I’d been secretly housing in my left thalamus since birth began to form various aneurysms. They ballooned, pressing their bodies against nerves and other vessels, creating space.
That day, in lecture, I couldn’t focus on the topic, drawn instead to the colour of my desk. The warm yellow wood, the softness of the electric lights. I closed my eyes. Then noise, flashes. A circus of colours and sounds, moving as if underwater, the feeling of slipping beneath the heavy undercurrent as the dizzy world speeds on.
At the hospital the machines are massive. The large CT scanner reminds me I’m a child of the future. Black.
The hospital staff doesn’t know my partner, Peter, is trans so I have to take a pregnancy test before my scan. We make eye contact, Peter and I. My eyes press into his. He stares at his feet in response. My throat pulses pain as I’m trying to maintain my balance while urinating into a cup. By this point, half my body is numb and giving off what feels like electrical sparks.
Later, I understand why he froze. For the first time, he is passing.
In the back of an ambulance, on a ferry to the mainland, Peter holds my hand, talks with the attendant. The ride is bumpy. I really need to use the restroom again. Black.
I wonder if death isn’t cold at all but a warm, dark sky that swallows you. I swim under the starless night, dive into silence, begin to separate mind from body and start playing hide and seek with my memories. And when I return, I’m aware of my name and who people are but my emotional photographs, the ones that made me, are lost.
After my first brain surgery, I return home. Peter is so quick; he creates whirlwinds with papers and pens and lists of things to do. He makes phone calls, his voice sharpened and intelligent, hands strong and forceful. He scribbles. Eyes heated. He’s loud. I run my fingers over the smooth wooden chairs, play with their old scars and ripples of wood. Through the living room window I can see teenagers enveloped in sunlight, smoking cigarettes outside the convenience store. One high schooler, green toque and lanky figure in the sun, begins to disappear into the light. The sun is eating everything, spitting its rays over the icy streets. My eyes are burning.
Television, with its quick and vibrant moving pictures combined with a small fistful of carefully time-slotted medication, can move hours into seconds. After three days, guilt swallows every ounce of my comfort. I e-mail one of my professors and asked her to let me audit one of her courses. Luckily, she agrees.
I don’t sleep much anymore, five hours at most. I awake in a panic, my large heart beating rapidly all over. I can hear the thick pounding, feel my pulse, but that little voice that is talking a mile a minute has disappeared. It’s surprisingly uncomfortable. I regret ever complaining about or taking for granted my brain. I miss her.
My closet is in chaos; shoes cover every inch of the floor, jackets, dresses, pants and shirts some on hangers, some on the top shelf and all in varying shades of black. Most of the shoes pinch my feet. I don’t understand why I wear these clothes. They are uncomfortable. Luckily, I find a drawer of oversized sweatshirts.
During these months, the right half of my body is swollen and tingly. It feels as though all the limbs on my right-hand side have fallen asleep; the soft electric charges prick my fingers and cheeks. I was once a dancer, a synchronized swimmer. I played acrobat on thick, moss covered logs when I was at the lake, catching myself as I stumbled was a game. Now, I struggle to do eyeliner. Above all else, the inability to paint my eyelids breaks me. I couldn’t form it into words at the time and I don’t think I even knew it, but looking back it was because I needed normalcy, I needed to be in control of something, I needed to find myself. The way in which I design myself, how thick my eyeliner is, how I wear my clothes or style my hair is done. Everyone has designed themselves in a particular way, and of course there are things like availability, due to class, body size, genders, which differ from person to person — but how I am comfortable, the size and cut of my clothes, is a physical, material representation of me. Take that away and I fade.
That afternoon, Peter straightens my hair. I watch his hands through the mirror as they gently smooth the brittle fly-aways. Apply product. Smooth again. My hairdresser.
“You’ll be able to do this one day; it’s going to take time,” he says.
My bedroom has a thin built-in closet, which sits across from these giant windows that breathe light into every corner. That day, I remember the closet illuminated as I watch the small nest of dark clothes spill over one another. This girl’s closet, her clothes. Not mine.
I spend time in front of the mirror, trying on her clothes. Thin, skinny jeans with frayed knees and a band t-shirt. A tight dress and leggings with scuffed 12-hole boots. For some reason, my body does not fit into these clothes anymore. The shoes pinch my toes; the faded jeans are too tight for my figure, there are bulges of fabric-encased skin. The shirts ride above my waist, exposing the top of the pants and the zipper. I don’t like any of her clothes. My clothes.
I cry all the time now.
A few months after my initial surgery I give the blue jacket away. I can’t wear it anymore.
I buy a new jacket. This one is thicker with a wrap around collar. It is sturdy. It wraps around my frame like a solid hug.
While visiting my current partner in Seattle, I find earrings in a thrift store. They’re long, smooth, magenta feathers. I trace my finger over the dyed material, feel the sleek body of the feather and remember. I like these, this is my style. A memory surfaces: I used to wear one feather earring in my left ear and a gold stud in my right. And there she is, another piece found, a series of memories attach to this picture, slip from the hazy night back to the present.
It began with the small things, like learning how to tie my shoes again and defining what I like to wear. Style, a conscious expression of self. I choose tight pants and shorter dresses because I love my legs, and, my clothes are mainly un-patterned because I would rather emphasize the cut of the fabric, the shape of my figure. In winter, when the trees lose all their leaves and the temperature dips even lower, I dress in layers. I adore layers. Loose scarves and sweaters over a dress, complete with heeled shoes that pinch my toes after a few hours. And coffee. I will always appreciate a hot almond milk latte on my way to work, knowing without a doubt that each one of my jackets are marked with numerous invisible stains, sweet sugar kisses, memories of sorts.
edited by rachel.
What a journey ! Thank you.
Oh ~ this feels so layered in senses…each sentence richly textured.
And we do indeed design ourselves; the pattern of our thoughts, the matrix of our memories creating the shape of our lives.
Thank you for sharing your tangible experiences of re~designing, of re-imagining your self.
Thank you!! <3
I’ve been thinking a lot in the past year about how medical stuff and scary bodies can change our relationship to our style. I haven’t had the experience you describe here, but I’ve gone on so many circles of my doctors telling me I should get XYZ technology, that it’ll help me maintain health and ability longer, but to do so I’d need to start wearing pants, or bras, or couldn’t be naked as much. And that was just not something I’m willing to give up – this tension between being healthy and being ME was too fierce and I just can’t. Maybe one day.
Grateful to have the option, hate making these decisions.
I loved this piece. It was beautiful and scary and sad and empowering and just really wonderfully written.
Wow! Your fire is going to burn for awhile.
Thank you so much for sharing and
Your comments ❤
This is breathtaking.
Thank you <3!
Some of that was painfully relatable for me as a former ballerina struggling with bouts of angioedema where I live in a fog of diphenhydramine and have to pretty much rehab my body after prednisone crushes me like a stone. Having to change the directions of my “grown up” clothing acquisitions away from smart pieces with buttons and zippers to pieces I can feasibly pull on with swollen fingers, shoes I can wear with swollen feet, loose things for a lopsided randomly contracting/expanding frame, while trying to retain a sense of my personal sense of presentation.
Control over body lost, a person just to be able to control something about their self.
And no matter what the medical profession doesn’t trust people with a uterus to have it unoccupied, I’ve had to sign so many disclaimers since menarche which while tidier than being demanded to pee in a cup(I have big opinions of how untidy that is for someone without a penis)still demonstrates a lack of trust.
All of this. YES.
I think the most reasonable thing would be to ask for help. There are now professional services that produce a chic template at an affordable price for presentations. I am trying to do that myself, because we are given such projects at the university all the time and there is no need for decent and high-quality services on these topics. I hope it will be beneficial if you get to know those experts here at http:/slidepeak.com . They helped me a lot with the design of great presentations that are not stylish to view on a business platform, not just in the audience of the university. A degree like that is exactly what it takes to be the highest.