crip fatigue time covid ouroboros/ spirit journey in a spirit time

"life is what death can't kill"

portrait of the artist getting emergency south indian delivery food, a “yes I delivered” required panotoshot by the Doordash worker turned tittie and belly shot.

“Power, we know what you want/ You don't want to be free, you want power/
Or you mistake freedom for power “

hello all

from a slow sleepy held breath. it’s virgo season but pisces full moon eclipse underwater at the same time. trying to get things done swimming against the low tide. like tricky’s pre millenium tension but in a global astro mood.

50 some days til us prez election, exploding pager deaths. and one year of genocide in gaza in 18 whole days.

tense tight space. here’s two posts about time travel.

sick days/ forever days

when I was afraid of getting covid the first four years I did everything to not get covid, the main root of my fear was, I don’t want to go back to the way I was when I had ME/ CFIDS when I was 22 and 23. I would tell people, I’m a different kind of afraid than people who’ve never had a deeply fatiguing condition because I know exactly what it is, and less afraid because I already had it. it’s not unknown. I know what it is.

the lost years. the years I was so so fucking tired. you may already know, it’s not tired, it’s fatigue. it’s my brain has gone away, i can’t think under these 16 weighted blankets of cement. i can feel my mitochondria screaming and shrivelling. oxygen canula crimped. it’s i’m curled up in this nest of shitty blankets on this junk picked futon on the floor for sixteen hours at a time, and part of me knows I could die here. crawl to the toilet because walking takes too many spoons. it’s taking a nap after breakfast and then being in too much pain and fatigue to sleep, sleeping 18 hours and waking up tired.

I prayed so hard to get better when I was that sick lost alone 23 year old, because prayer was a lot of all I had. and I slowly did. with a lot of years of getting used to backsliding and flares and getting sick again and being bedbound and being in pain flares and having wild random things happen to my body. being an old young person, a young old person. Like Ellen Samuels writes in 6 ways of looking at crip time:

“Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.

I swim in the warm water therapy pool at my gym, usually accompanied by men and women in their sixties and seventies and eighties. They give me sideways glances, sometimes hostile, sometimes curious: Why are you here in our space? Why aren't you in the regular pool with the other young-looking, healthy-looking swimmers turning in neat laps back and forth?

-Ellen Samuels, “Six Ways of Looking at Crip Time”

As I got “better” and made my slow, miraculous recovery-ish thing happen, not not-sick but able to get up off the floor, it was still always: the fatigue would come back and hit me periodically. and I would panic, but after a while I got used to the truth that it always went away again. I started to relax into a lifetime of knowing my regular predictable unpredictable sick.

and, I had a sore sick body but I had a fast brain again. too fast sometimes and also oceans of sad, but I could think and plot and plan. I was a cripple success story and even if I was against the whole idea of cripple succes stories, I still had to be not-sick enough to survive the world. even if there was no cure, no “beating this” I could work and I could “have a life.” I could be legible. and legibility and some kind of cute hot wanted respected seen by the others can be the difference between life and death for a young sick one. I wanted to live and have relationships and make art and survive, and that shaped me to not want to be popular exactly, but to work for social love coins. to be good, to be respected, to be invaluable.

but I never forgot or was that far away from the other world of me and friends who were too crazy and sick to work, who had lives but who were not in the normie world of jobs and life escalator. who live sick lives in our apartments, outside of clock time. on your couch watching the light arc across the living room over the hours of a day. slow walk to tim hortons or the corner library. low spoons snail quiet tight budget life.

fast forward twenty five or so years, and I got COVID in May 2024, my worst case scenario I’d been praying against and warding off four four years. The COVID didn’t kill me, like happened with first gen COVID- this was what, the 36th wave of covid? It’s a whole different virus. It doesn’t always kill (as much of course it still does). It just changes you, all of you.

They say COVID ages you, and some days i feel not 49 but 51 or 54, whatever that number means. the stuff i google, studies say there’s 2-4 years of epigenetic aging, whatever that means.

I call myself a veteran of the cripple wars. I know many others.

my life and death are not the not sick anymore miracle, but they still miraculous. so is yours.

**

When I was a kid my favorite days were sick days. I wasn’t allowed to take a lot of them because there was this enforced working class/ child of immigrant thing of, school being equivilent to work or also the army where you just SHOWED UP.

but they were dreamy when they happened, when I was sick enough. it was the one time i was both not at school getting my ass kicked, or being home with my parents where there was consistent but unpredictable violence. I was alone and safe and could let down the guard of my skin braced for impact. one of the only time my nervous system got to be calm. experience of safety and peace. all these years later

My mom, in her own way, liked sick days too. She never took them and she loved to work, she loved the miracle of earning her own money she knew wasn’t guaranteed. But she lived for summer vacation as a teacher. She’d still be working her second job, but she had two whole months to go offline and inside. days were organized around house projects, reading library books, going on very short day trips to the farm stand or to get ice cream two towns over that in hindsight from a cripple adult futrure, were what her brain and polio hips could deal with.

it was low key. there was time to just cook and eat and wash up. in today’s parlance, it was her time both for radical rest (though not quite- she was still working, paid and unpaid) and for a low sensory environment. a neurofree space where she could let the mask drop and get real quiet and weird, talking to the plants and british tv and library books. maybe a little bit of a space where we could imagine life after or apart from capitalism. what would it be like if we just cooked, ate, washed up, read, did yard and garden work. if we just got to live.

my mom built a grape arbor out of old pipes, from plans in DIY books she checked out of the library, got three concord grapevines and they grew over them. we read library books and ate free grapes under that green bower made out of her working class raised femme hands. in neurosilence, unseen. safe.

some of my best times as an adult have been those kind of times. times outside of chronus, clock time. sick time is outside of punch-the-clock time and while it can be terrifying- both because of sick and because of poor, being about to be evicted, no food, isolation, am I dying, the usual- there’s also been sometimes peace.

I’m in my apartment, I walk to the mailbox, I write a letter, I live life. life that exists in all the ways it does when is not about wasting and destroying

. the times when i didn’t have a lot of money it was hard all the ways starving to death is hard. but I had time.

the virgo/pisces eclipse that just happened, one of my favorite astrologer friends jumped it back to before before the last time there was one, back back to the september 2006 virgo/ pisces eclipse, and asked people to remember what they were doing then. what I remembered was, I was nursing a big heartbreak, but I had a small grant from the ontario arts council and I was sitting at my white zinc piped with indigo blue edge kitchen table in my two room apartment, writing. just writing and drinking coffee and masturbating and walking to yassi’s place cafe to buy a bagel and walking back over the railroad tracks. I was applying to MFA school and I was teaching Asian Arts Freedom School and stringing together money here and there. I was working on booking Mangos first tour which would happen spring 2007, and I was throwing shows.

but mostly, I remember having a lot of days where I would write at that kitchen table and drink endless coffee from my stove and climb out onto my roof to smoke cigarettes.

almost twenty years ago. a different time and a different world. quiet universe at the crip kitchen table.

***

the reason i’m bringing this up right now is that I am…. uncharacteristically not busy in some of the ways I am used to, for a moment. still lots to do. but I took on a lot of extra gigs because I had legal fees and so I busted my ass working through a lot of summer. now a lot of its done and I’m aimless, in the middle of waiting, of the world holding its breath. watchful.

but ALSO I am tired. more than. hello fatigue it’s you again? it’s four months since I got COVID like right now and I am…. watching the way this disease changed me and is still changing me, looking down on the couch at how covid touches all my cells mosaic. watching my mitochondria do an old and a new dance, their tiny power plants morph. what did I just say? let me stare aimless at this to do list. let me wander in circles in my rooms I rent. this, I remember.

the future is disabled and we’re in it and are it. most people are sick, slow, different. some days the only way i can get anythin done is playing the same chappell roan and charl xcx albums over and over and over. yes I feel embarassed by this but fuck it it’s my autistic terrible pop stim loop that gives me energy shots when i have none. we, I look at those “did covid break our brains” posts and mostly don’t have the spoons to read them. some of us are lying in darkened rooms for months or years, some with vertigo every day up and down like we’re shot out of a cannon for the past two years

mine is subtler. I trace the abacus of how this shit is still in my cells. in how I get tired at 4, a nap is a need even when i fight it. when I have days of not doing. nut just. i swept my floor. i listened to democracy now. I lived. I was a human being with a body and some tired.

I get frustrated with a lot of the you are worth so much more than your productivity stuff that’s out there, because it’s not that I disagree, it’s that a lot of it seems to completely skip over the fact that most people who are working all the time are not doing it because we believe our worth is our productivity. we are working all the time because we have to pay bills and survive and eggs are eight bucks.

and also because: I like making and doing. i like being able to create. i just don’t like the capitalist gun to the head no safety part of it where labor gets ripped from us in years of our life a la the pain machine in the princess bride:

in this window watching of month four post covid quiet sleepy sick brain fog waiting time, i touch my 26 years ago newly disabled self, with all the fear and all the possibility being reduced back to a tired body brings. the terror and also the, I get to just be. i get to just watch my breath go in and out.

I think about how time has always been/ has become even more one more privileged commodity amidst the commodification of all else.

what will we become, this universe of slow continuum ones, “prematurely” aged brains, veterans, broken brains different. masses too tired to riot so we riot some other way.

my old fatigue and my new undiscovered country sick curve hands, ouroboros, to touch each other, breathe each other knowledge.

what if crip time travel happens when we are still alive. present self to younger self. period and when sickness comes new and again.

2. spirit journy in a spirit time

I’m prepping for a big journey to go to some of the homelands. to chase my grandparents spirits, to go to the houses where my dad lived the addresses of which I only was able to access after he died, to go sit on the grave of my great-grandfather who died fighting the japanese army, and to leave a little of my father’s ashes everyplace he has roots. death everywhere makes you want to do your bucket list.

disabled brown travel is not lightweight. this trip has been four years in the planning and making, happened with a lot of help and organizing from friends. when my dad died, in the middle of pre vaccine lockdown, I told myself that when the borders opened up, I’d bring his ashes to three of his homelands. australia, where my sri lankan family migrated in the late 1960s, singapore, where he lived from ages 8 to 18, and sri lanka, where he was born and is from,. and where he lived in immediate post war times.

bringing the ashes back is just something we do. so many Lankans I know couldn’t go home, easily or at all, for decades during the war. family members died in exile. we grew up in, as the Tamil queer artist YaliniDream refers to it, ioutside lands. now that the wars are different, we bring them back. even if we are not ”good children” filial duty lays on us. we make the journey when we can.

a friend asked, didn’t your father hate Sri Lanka and I laughed and said oh yes. he spent the whole time I knew him disavowing his origins, mostly. I mean he still talked about them constantly, ethnic echolalia, but he also shut down his face like a storm cloud fist when I asked an 8 or 18 year old question. immigrant dad black box filled with booze. don’t ask him about it, he won’t talk about it. they asked what was your relationship like with him? well, he was terrifyingly violent to me and my mom when I was a kid, and then when I got my full height at age 12 I started fighting back, and we continued to fight each other until I had to go no contact, and then we fought each other without mostly ever being in touch until he died.

in some ways, we haven’t stopped fighting, though there has been an armistace. my mother, we did a lot of healing in her last year on the planet, and after, and she’s a benevolent presence I feel when I pour her some sherry or tea, leave her a cookie, ask her for advice. we love each other better than we could when she was here. him, his spirit is just gone. I arm wrestled to be able to get his ashes and they’ve been in one of my closets with LL’s compost facing him down for the past two years. have you brought his ashes out? no they’ve just been in my closet because,you know, fuck you. ok well maybe you want to make a little altar?

I did bring the ashes out. I did bring some of his photos out. I did just sit with them. It shifted some things, helped defuse the bomb. every friend who looks at his face goes, whoa. one friend said, he is so frightened and frightening at the same time. another friend said, he looks like he’s seen some shit and also like he might do some shit. in thw photo of him holding me at age 3, when I look in his eyes I see all the wells of pain in him. I see how he shouldn’t have been allowed anywhere near a child. I see that somehow I’m still full of love in his arms.

1978

at the beginning of this year, an artist I respect wrote about going to their home country and documented running into a long lost family member who turned out to be queer, totally serendipitously. i wrote them asking for advice about going home on a spirit journey

and they wrote back

they told me that they did all this planning and made all these contacts and when they got there, a lot of them didn’t come through but it was ok. they just needed to walk around and feel things, crash when they were tired, follow the land, run into the people they were supposed to. they said “the land loves you and is calling you it seems.” to trust that, even when it seems nuts to, when you don’t know how.

spirit journey spirit called, i still worry i didn’t prep enough, didn’t reach out to the million contacts people gave me enough, that I don’t have a day by day itinerary. I tried reaching to my grandma’s brother’s son who was a harm reduction worker twice on facebook, once via his work email i got from his linkedin, so far to no avail. I’m sitting here sifting through immigration records and the careful lies of the national archives. i feel like a fucking goon. it took so much work to fundraise and plan to make this trip happen. there may not be planes anymore a hot second from now when the trade winds shift all the way, and I can’t count on this body or borders to allow me to go this far again. I’m not just going to casually go to melbourne next year and I might not be able to find them. so what am i doing?

going to the house my dad grew up in, walking around and letting the spirits talk to me.

****

i haven’t left north america in a decade. I’ve barely left my house or gone more than three neighborhoods over for the last couple years. the first two pandemic years in seattle it was a big deal if I left my house let alone my immediate neighborhood. just driving to carkeek park from south beacon hill was a legendary journey, driving thirty minutes on the 5 felt like getting on a plane used to. my brain turned on seeing different colors and shapes. it’s that sought for balance of stim and security.

I used to be a crip high flyer. I used to take any opportunity and make it work. I used to just go on hyperfocus and speed and crash later in private. I don’t, can’t do that anymore. Pandemic shifted me to a life where I have my apartment and routines and travel within a geographic region rarely, live in a city and an hour or two’s drive outside it. just like my mom. different than my mom.

**

when I stare at that 1978 photo of my father and me, next to his ashes, next to a watercolor painting my friend who died made, under an army of stern ancestor faces glaring at him, something does loosen in me.

I think: sometimes the peace is found in, you got your freedom and you really did break the cycle of violence.

and the price of the ticket is, you may not have much or any biological family you’re in touch with.

sometimes the generation before you got so fucked up, the best case scenaio is, you start a new line of the family tree. you’re the branch that broke off. your new line might be your chosen forged who become blood through the power of your desire.

so many of us with torn up roots go looking for The Truth. what happens when you know there are things that are just gone, that you just won’t find out? what story do you write out of that space? not simple heroic or tragic. not lying to make things simple and revolutionary cute.

what comes out of that powerful void.

when so much got lost and took, this might be the best best we get.

“We cannot blame ourselves for the wars our parents start. Sometimes the very best thing we can do is walk away.”

― Becky Chambers, The Long Way to a Small, Angry Planet

updates:

not many because of the above, probably some things I’m not remembering. stay tuned for book news.

“the body: a praise song” reading with danez smith, meg c day and Cynthia Mannick, as part of the dodge poetry festival (online, recorded, ASL interpreted) October 17 2024 online.

thank you to everyone who has followed this stack through the recommendations of:

M. Téllez

,

Kai Cheng Thom

,

Grief Spells with Mara June

Cindy Crabb

and

The Impairing Curse

and just friends forwarding this email xo.

and thanks to everyone who supported me when my Patreon got hacked and shut down earlier this month, including in helping me get it back up and by doing paid subscriptions. I’m doing alright, and, the money I get from Patreon and here is perhaps my steadiest check I don’t have to invoice for.

we’re still doing crips for e sims for Gaza. we raised over a million canadian a few weeks ago. I wish we didn’t have to. history may remember that disabled people and friends helped jury rig a telecommunications system through a genocide. we’re still going. this person wrote a really cute post about what it’s like volunteering for crips for e sims. if you want to volunteer, please reach out to Jane at cripsforesimsforgaza(at)gmail . Mirna put us on the Connecting Gaza website

oh wait! Witches and Warriors was amazing and proof that you can have an in-person 3-4 day BIPOC writing retreat, do solid protocols and no one gets COVID! I’ll write more about this soon./

there’s more stuff in the works. if you’re in melbourne/ naarm, singapore or sl hit me, I’ll answer if I can.

peace before everything,

Leah

lyrics:

“treal”

“life in marvellous times”

“priority”