K.F. Mittendorf

I have been told that to rest is to come home to your body. The image is persistent: a cozy little house for my consciousness, complete with soft pillows, a fire in the fireplace, a mug of hot chocolate, a cat on a lap. Maybe a nice book. Gemütlichkeit. Hygge. A combination of warmth of feeling and comfort that doesn’t have an English language descriptor. There was a time when my body was home, when to rest was hygge.

Now, three of every 28 days, Body inhabits an oversized tan chair and has little choice but to lay back while letting a thick biologic syrup drip into its veins. The picture of a sick person spa: warm blankets alongside crackers and beverages — water and diet, off-brand Sprite. Of course there are fluorescent lights, incessant beeping, and chatter from the urgent care waiting room next door, but these features have become soothing. The familiar background to forced Body recovery. But I do not rest.

Every noon, lunch forgone for a nap. Body collapses at the end of the workday and sleeps two to three hours before it wakes to eat and barely housekeep, just to re-enter sleep. On the weekends there is no plan for activities. Instead, inexorable gravity presses legs and eyelids into thick hibernation. I traverse a strange, partially conscious landscape where Mind travels delicate ephemeral threads within Body, weaving semi-lucid dreams out of the myriad vibrations. Dreams of torture boxes, full of needles, resting on my shins. Of buildings resembling medical complexes composed of mazes of hallways, of aching legs as I try to escape. Of being consumed by fire. Of floating above the bed watching legs writhe. I do not rest.

To be able to work, I spend the day consciously dissecting Mind from Body, setting up a thick steel wall between us —  an irony that in my work I frequently use the disability lexicon favorite “bodymind” as though my own were one inseparable entity. As though I’ve allowed them to even inhabit the same spacetime. As though “I” don’t attempt to reside solely inside Mind, a mind that just so happens to be dependent on a foreign container (body) that is rarely my own.  As I write, as I calculate, as I listen to complex concepts, Mind hovers in the space between my chair and my screen, unaware that it is encased in a complicated mass of tender animated jelly. I set timers to remember to use the restroom. Otherwise I wouldn’t know.Such is the state I inhabit, within myself, apart from myself.

The moment the timer goes off, the spell is broken, and Mind comes crashing back on my not-self. Ripped through a spacetime warp it collides into a carcass. Blocked nerve pathways reawaken, and pain creeps along the lower limbs. This pain is not that of an injury, old or new. She is both acute and chronic —  she doesn’t ache, or stab, or burn, or throb. She is the slow cold mists of Hel, the underworld incarnate creeping along the fascia somewhere just below the surface, unwinding individual collagen fibers with spindly fingers, searing the nerves with sharp liquid nitrogen fingernails as she goes. Mind asks if pain is also the reaper. If her masked face is the same as that of death. I cannot answer. Mind is tugged back not to a home with a fire under the hearth but to a house on fire. I do not rest.

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K.F. Mittendorf, PhD (Bluesky: @thedrkittendorf.bsky.social) is a multiply disabled academic scientist who does oncology and genetics research and teaches genetic counseling students. They have been a full-time patient for the last decade, undergoing a number of hospitalizations and treatments for systemic lupus erythematosus and associated sequelae. They are known for their work in the #DisabledInSTEM community, which can be found alongside their other work at www.katemittendorf.com.