on sick endurance
far-off visions of lengthened love & widened care
i have been elsewhere.
no. I have been one thousand small and grand elsewheres between here and April, when i last wrote to You. i am living in a new (old) rickety house, working my first big-kid job, grieving unexpected loss, getting to know the trees & front doors & side gardens & driveway cats of a new 5-block-radius. when I started this essay, it was late summer, giving way to early fall. now it is safe to say that summer has come and gone, and as autumn takes her hold here I find that I am new in ways, too. of course, I am also the same.
what is not new is this Pain. what is not new is this Body. what is not new is this Body in this Pain. no, that story is ancient, and relentless.
i have been thinking of endurance as it relates to cripdom and chronic pain lately. more specifically, how distorted the pain signals of the body become when one’s vessel houses a constant undercurrent—riptide, whirlpool, tsunami—of pain. i am flaring now, badly. it’s a type of pain that would’ve had me rushing to the ER within the first day of its arrival, were this 7 years ago when this pain story began. it has been intolerable pain for over 6 weeks straight. it has been the kind of flare where fantasies of chopping off limbs play on constant repeat, and the world shrinks to the size of a sea-shell or, more realistically, a queen-sized mattress whose sheets are overdue to be changed. it has been the kind of flare where 100% of my daily energy has gone towards a sort-of-constant bodily triage (including cupping & foam rolling & heat & ice & magnesium & three kinds of muscle rub & avoiding sitting at all costs) with no sort of relief. it has been the kind of flare where the pain will signals grow slightly less catastrophic for an hour or an evening, and i think thank God, thank God, i’ve survived it, soon i will be making my exit toward this flare’s edge, only to have the pain come roaring back worse the next hour, or reemerge as i stumble into bed for the night. it took me 14 days of these emergency levels of pain to make an appointment with a random PCP, because I knew without having to make any calls that my pain specialist wouldn’t be able to see me for at least 3 weeks. after seven years of this Body in this Pain surviving in this World, I’ve reached a point where it doesn’t even occur to me that being seen by a new doctor may be better than not being seen at all; that it may not necessitate more medical trauma because, well, 9 times out of 10, it will.1 seven years into being ill, it is somehow the least painful option to endure. and so I do.
ways that enduring has looked these past three-and-a-half weeks:
disappearing from most text communication and social plans without explanation and having a long cry about how lonely i am on a blanket in my backyard while watching an overhead maple’s branches shiver in the wind
rationing pain medication prescribed to me after a 2019 surgery so i can sleep at night (not sleeping at night regardless)
talking to my body like a child, a confidant, a stranger
going on a 5-minute walk in my neighborhood for the first fresh air i’ve breathed in days & walking past the duplex i grew up in, the one with the beige carpets & the mold
bathing in eucalyptus & epsom salt, placing the lily-pad-shaped leaves up my thighs & arms & eyelids, visualizing them sucking the perpetual ache out of my joints like leeches
enlisting my dad and a trusted few friends as body-workers and grief-keepers
going through every soft t-shirt i own, wearing the same cashmere sweater and soft black hoodie thin
miraculously escaping to the ocean for a weekend and speaking a prayer into the late afternoon waves
lighting candle after candle after candle
dreaming about a global walkie-talkie network for all the sick and pained humans to be able to talk to each other across the depths of flare (how many of us must there be, stuck in bed in the dark with our grief, unshowered & nauseous, counting up and down the spines of crip time? how many of us endure by watching the minutes that are also days that are also weeks that are also the lifetimes that these flares bend time into?
four-and-a-half weeks ago i scrawled this poem into my journal late one night, in a pocket of oxycodone-induced surrender:
this flare is long
(12 days, with the bruises and griefs to prove it)
but the love i am after is longer
the care i am seeking, wider
the two sing harmonies together around the block
cast nets of corn-silk protection across my sick bed
they scoop me out of my body or
when i cannot move a muscle
they join me in it, without word.
a month later, this earnest attempt at a sick praxis is being challenged. like the flare Gods said, oh yea? let’s put this love to the test. let’s see how long and wide your visions of care can be sustained after 6 six straight weeks of so much pain you find yourself fantasizing hourly about the relief to be had from slicing through your torso and going about the rest of your life as a floating waist up entity? what of enduring then?
i do not have an answer, or even a beginning of an answer to this question. i simply don’t know. there are other things i don’t know, too.
for instance, I don’t know why i write, other than to make the unbearable known. to give voice to the invisible wounds that are unfolding within me through the wordless course of these flares. there is perhaps also a part of me that writes with a desperate dream of building a world made up of sentences that entice this pain out of my bones and onto the page to be caught, in some small way, by You. above all though, writing is it’s own form of enduring. it’s perhaps one of the few tools i have that allows me to give meaning to that which would otherwise be utterly meaningless, senseless, illogical: this Body, in this Pain.
it is rare that I write with an idea of what i want to say. no. most days, i am writing to make the pain survivable. i write aimlessly until i find my aim. i write when I am struck with the essential need to go someplace that is not here, not now. or if I must remain, to at least beckon You into this here & this now with Me.
in body-mind solidarity,
Sage
to his credit, the new doctor i saw did not incorporate medical gaslighting into his practice, and in an uncharacteristic act of decency, actually prescribed me a week’s worth of the good pain meds (the stuff that will get people whose Pained Bodies look different from mine called “drug-seeking” if they’re not careful).
🫱🏼🫀🕸️🫲🏼