The Beauty of THE BETES (& an upcoming event!)

There are certain initiatives, or organizations, or movements (or all three) that are so fantastic and beautiful and necessary that they make you want to knock on every door and tell every person about them.

You want to throw fluorescent flyers through hallways, like they do in every 90’s movie involving a big high school party, to make everyone aware of the events that are unfolding.

You want to grab the hand of each person you speak to and say, Listen. This is important.

THE BETES is one such organization.

betes

Founded in 2013 by perfoming artist Marina Tsaplina, The Betes Organization’s mission is ‘to pave a path to joyful health for all people who carry chronic health conditions through creative and unique theater-driven programming.’

They are working in the emerging field of health (or medical) humanities, which focuses on the many roles of the arts in the realm of medical practice. There are so many aspects to health humanities, so many possibilities, that I find it difficult to give an all-encompassing definition. This field touches everyone: the medical practitioner and the patient, the person living with chronic illness and their loved ones. Art is an extremely powerful tool for empathy, understanding, communicating, coping and healing; the medical humanities embody that. The Betes embodies that, too.

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Low.

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The world feels fluorescent when my blood sugar drops below 70 mg/dL.

It hits my eyes first usually, the same way alcohol does, then scatters through the rest of my body. I’ll be in mid-conversation with a customer at work or pushing a grocery cart through the produce section and my vision begins to lose focus, everything appearing hazier but with more contrast… too much, too bright, everything overwhelms. I can’t process; I can’t take it all in. I realize what is happening and abandon my cart by the avocados; try to calmly, politely wrap up the conversation without appearing as if I’m in the throes of a medical emergency, and I retreat somewhere–the bathroom, the breakroom, my car–to take care of myself.

Or, I’ll be sitting on my couch reading a book, and suddenly realize I can no longer connect the words to their meanings, or the characters to the plot. I’ve just read the same sentence 7 times but what did it say? A wave of exhaustion will wash over me so swiftly and heavily that it physically sinks me further into my seat. I’ll look up from the paper pages. The room is jarring; my eyes are darting around, sticking to small details–a fold in the blanket, the sway of the ceiling fan. Minutes pass before my brain registers what is going on: Low.

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Diabetes // slant love

Tell all the truth but tell it slant —

Success in Circuit lies

Too bright for our infirm Delight

The Truth’s superb surprise

As Lightning to the Children eased

With explanation kind

The Truth must dazzle gradually

Or every man be blind —

– Emily Dickinson

Since the day diabetes made itself a home in my body, it has known nothing but constant goingness: high school, college, travel, work. It has known drinking and smoking and a level of Burnt Out by school and work that was so large words can’t communicate it and I still can’t believe, years later, that I survived it. It has known depletion and excess. It has known 20+ countries and 14 different living arrangements. It has known lots of caffeine. Mountains and rivers and lavender fields. It has known anxiety and loneliness and sorrow and laughter and elation. My neglect and then the guilt that followed. My flux of care, attention, frustration and emotion towards it.

In the past decade of our co-existence, something it has never known from me, truly, is any sense of love.

I’ve been thinking about this so often lately, Is it possible to love my illness? …that Thing in my body whose mission seems to be Trying To Fuck Shit Up… could I ever love that Thing?

How could I ever love that Thing?

The reason I’ve been thinking about is because… I kinda sorta feel it. I feel the love. Not all the time… but sometimes, lately. When I’m in a good place–in a fleeting, good moment, I do feel it.

Not love as in, I’d like to keep that Type 1 diabetes around, what a stand up guy! I’m not insane.

More like the way you love your roommate’s cat who is also the worst because he can open drawers and open Tupperware with his paws and find your Mac & Cheese, open the box of it and spread uncooked noodles all over the kitchen floor for you to come from work and step on. Perhaps the cat is also constantly plotting to kill you.

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But then he purrs up against you or teaches himself how to pee in the toilet and you’re like, Ok, fine sometimes you’re alright, you mischievous motherfucker.

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It’s like the way you love something that you also hate and are forced to live with.

Chances are I’m going to have this disease forever. Fingers crossed for a cure, always, but I’ve also got to be able to survive in this body every day that there isn’t one. Rage doesn’t serve my small, sensitive eco-system well. It destroys it. So a feeling of appreciation or gratitude or protectiveness towards this disease, however fleeting, I will grasp and hold on to with dear life and call it Love.

Love as in, Protecting something that can’t protect itself (and knowing that your own life depends on it.)

As in, Who knows why things happen or why they don’t or when they will start or stop happening. Type 1 diabetes was once a fatal diagnosis. I am grateful to be alive.

Slant love– love that is roundabout and complex and elusive.

An act of self-preservation.

But love.

Diabetes // slant love was originally published on Coffee & Insulin

The World Of My Illness

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This past weekend, I stumbled upon the blog I kept before this one. I started it when I was 20, as a study abroad blog for my semester-turned-year in France. I got sucked into a vortex of drinking wine and scrolling through my old posts while waiting for a friend to pick me up on Saturday night, and besides making me feel like I need to quit my job, sell all my shit and hop on a plane to anywhere this very second, this old blog of mine also made me feel happy-sad for one specific post that I wrote on there, titled “Dear Type One Diabetes.”

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body of water

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my blood sugar is ocean tides, rising, falling, rising.

don’t look at me. look at the moon.

 

 

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