There's a mustard yellow, velvet chair that's deep enough for me to put my feet underneath myself when I sit in it. It's next to our living room window, and it gets alot of light on sunny days. It's where I often sit when I have phone sessions with my therapist, it's where I used to sit to meditate, and it's where I like to go when I need some time to myself, to read, to write, away from the TV that's always on in our bedroom since its on/off switch broke off. (It's old. )
This past Saturday was a freakish 77°F, and mostly sunny. I'd known about the forecast since Monday? Tuesday? and I'd been looking forward to possibly getting out somewhere in my powerchair to enjoy it before the return of our regularly scheduled 40°s and 50°s rainy days. Unfortunately, the night before, my heart rate had stayed hovering somewhere between 102 and 118 bpm for hours, leaving me dizzy and with the worst migraine I'd had in weeks. On Saturday, I was still wiped out and didn't get to go out to enjoy the weather. Instead, in the late afternoon while our south facing window still filled with Springtime light, I sat in the gold chair, my legs folded beneath me, my lap covered in a burgandy throw my mom sent us years ago.
Chronic illness has a way of reconfiguring our desires. Three years ago, maybe two? full of the urgency of a first hot Spring day, I would have been on my way to Riis beach with my bestie, a backpack of snacks and my usual Riis look of a short skirt, a bra and my punk vest. These days were the days I lived for, the chance to see and be seen by the Riis Queer-noscenti, and to feel the warmth of the sun and of the community.
I still miss this world so much, but it's become so much harder to access. I rarely have the spoons to be social anymore, even though I miss my friends. Even more, I miss myself. I know that sounds corny, but I miss being the Sarit who goes to shows, who goes to Fat Femme Clothing Swaps, who works (I don't miss sex work itself, but I miss so many things that it gave me, ) and who goes to Riis.
My world has become small. Being able to shower, get dressed and take my powerchair to the supermarket up the street feels like a huge outing, and tires me out like a huge outing.
I've had short periods since I got sick where I felt honest to goddess close to normal, and I've learned to never take them for granted. When they come now, whether they're a day, a week or a few hours, I treasure them and do everything in my power to make the best of them. But they're rare.
For now though, I look forward to warmer, sunnier days, and I'm grateful for my velvet chair by the living room window.