In sickness and health

I got all dressed up over the weekend for a wedding at the Meadowlark Botanical Gardens out near Wolf Trap. I can’t believe that I didn’t know about it before – 95 acres of gardens, forest, trails, and historical buildings with $5 admission? It’s a little far to go for an afternoon, but now I know where to bring someone for a picnic.

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We were in luck: although the wedding was mostly inside, the weather was blue skies on all sides, and balmy enough that I was able to go for a walk around the grounds without completely overheating. The benefits of flats: you’re always ready to explore.

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It was the first time I had dressed up in a while. I had forgotten how good it felt to dress myself up intentionally as a piece of art. After years of joyful experimentation with my personal style – the long, hard-fought road of creeping victories against self-consciousness, body shame, and fatphobia – its atrophy over the past year has been subtle but painful. Dressing a sick body is different than dressing a well one. So much of the clothing I had once enjoyed is off limits now. My collection of structured jackets exhaust me, bra bands and binders hurt my ribs, almost all of my jewelry gives me rashes or aches, and tight waistbands instantly set off my gastro issues. My entire collection of high heels is just gathering dust because I can barely balance in well-structured flats. Sickness is exhausting, and sickness is isolating. After I got fired for getting sick, I’ve been spending most of my time at home, with the energy for maybe one errand a day and one outing a week. Who is there to dress up for?

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Dressing up for the wedding reminded me that style is a powerful act of reclamation. In the past, whenever I was self-conscious about a particular body part, I lavished love upon it. I matched red lipstick to my red face, I pierced my bellybutton, I buzzed off all my hair, rocked crop tops and short shorts and sleeveless shirts and the brightest colors I could find. I have #VBOpride.

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Unemployed, unoccupied, always exhausted, waiting endlessly for a diagnosis that may never come, for a doctor to work tirelessly so they can sit down with me and say, “We’ve found something that explains all your symptoms, and we can help you,” instead of leaving me to find my own next steps. My sick body is always in flux, in the process of investigation and changing definition. I’m a network of nerves, a tangle of acid and tubes, veins and arteries like the canals of a great city, a binder full of MRIs and EEGs and EKGs and EMGs, but never a whole person.

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If my body has to be a project, I want it to be a project of joy, whimsy, humor, and exploration as well as frustration. I’ve thought of starting a blog for a while but never had the time, and now I have nothing but. So:

Let the games begin!

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