After Spinraza injections, the ‘floaties’ in my eyes appear like straight lengths of ‘string’ with an impressive knot in the middle. Uniform, peculiar as my ‘normal’ floaties go, which are bendy, twisted affairs, beautiful in their organic go at existence. Plentiful when I am sick and sparse when I am properly hydrated. These ‘new’ style of floaties cut across my vision, like slow moving cargo ships, pregnant with genetically modified packages for my body. I notice them most the next
My feet feel like I’ve been standing on them all day. They are achy and throbby and super glad to be in bed. I did not use my fancy schmancy foldy chair to adjust myself but for one hour today… really over the past four days. I’ve been working. Planning. Dreaming. Hoping. Crying. Praying. Grounding my feet in the only thing that makes sense to me during this time of year: work. It’s Oui Color work; my main website work.
There was a taped interview I did locally when my art was presented at the gallery last year. I got dressed and showed up that day, sure that my hat and winter shawl were all in place. Camera pointed at me, mic catching my lilting voice, charm on fully – the interview went well. The videographer assured me he’d send a link once the clip was compiled. When the link arrived some days later, I eagerly watched it, waiting for
Those three weeks you spent trying to find a place to get a pedicure and all you kept getting were tacit, ‘No. we can’t do that here’ responses. But you’ve come to expect as much and just keep trying. You tried today, hopeful you’ll find a place and look forward to feeling pretty and taken care of, only to be given two more No’s to add to the self-esteem devouring weeks you’ve been having. You just stop, mid-voyage and silently
Disabled Chronicles, No.2D: I glanced at the image the fluoroscope captured on screen: my neck, right side extended and exposed; vertebra like puzzle pieces, spaced out. The faint outline of the base of my skull, my jaw… was that my chin? The earring of my left ear shown dark against the shadowy soft tissue forms of my neck and head. Love, there was this moment of Love for this this beautiful, misshapen body and all that it’s managed to see