This is a story about what comes next. This is a story about a wolf eating me bite by bite, and licking his chops.
No, no, no. It’s just that the word lupus lends itself to such beautiful and malevolent injury.
But anyone living with disability and chronic illness–any of my fellow crips–will tell you that the lived experience is not beautifully dramatic. It is about mundane pain. It is about how pain becomes circadian and normal. It is about what humans can get used to–carrying glasses with both hands to spare the weight on your joints, the film of oil that accumulates on the stove because you can’t scrub it.
It is also about what can’t be gotten used to. Daily pain doesn’t cease to be pain. The rhythm of hold back, hold back, hold back hurts. The closet hurts. If by used to one means “getting over” and “ceasing to notice,” this is a fantasy. Usually, a TAB fantasy from someone who isn’t willing to be with it. Mind over matter is another TAB fantasy. The idea of the indefatigable human spirit is another TAB fantasy.
Content note: my doctors don’t know what the hell is wrong with me; lupus is just one option. There will be no answers for a long time.