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Posts by naked and stunned at the end of the world

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Stop myalgic encephalomyelitis I wanna get off: coping with a crash (or trying to) New year new wut?

Greetings from the inflammatory wasteland of the ME crash—a dreamscape that is both vast and claustrophobic, where space and time invert and distort, where sudden and confounding symptoms split the sky like lightning, shake the earth like grinding tectonic plates.

open.substack.com/pub/thisisra...

3 months ago 2 0 0 0
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Caught Between Crises: Long COVID Patients Struggle to Find Healthcare in Rhode Island With Rhode Island’s healthcare system strained to the breaking point, long COVID patients grapple with complex, mysterious, and disabling symptoms — and find meaning supporting each other and working ...

I have a new article out in the Providence Eye on the long covid crisis in Rhode Island, and how folks are getting their needs met (or not) amidst crumbling health infrastructure.

pvdeye.org/caught-betwe...

#longcovid #localjournalism #chronicillness #mecfs #healthcarecrisis #millionsmissing

7 months ago 9 3 0 0
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The unbearable lightness of moving the microwave: radical acceptance is a moving target Navigating the strange terrain of an evolving baseline (with gratitude to low-dose rapamycin)

"As I explore the landscape of my new baseline I find myself living in the friction of intense desire and unwanted limits, tentative action and skeptical amazement, frustration and delight, anger and gratitude."

thisisrachel.substack.com/p/the-unbear... #chronicillness #longcovid #mecfs

8 months ago 5 1 0 0
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The day the earth stood still Grief brings us into intimacy with the unthinkable, and also offers us greater access to the sublime.

"It is everyone’s responsibility to care for the most vulnerable among us—not because of some abstract principle, but because that is what resistance to a politic of fascist eugenics looks like."

A new writing on the practice of presence and the metabolism of grief.

substack.com/home/post/p-...

9 months ago 3 0 0 0

Hey, I'm the author of this essay--just wanted to stop by and say thanks for reposting. Love and solidarity.

9 months ago 0 0 0 0

I'm the author of this essay--thank you for sharing! One of the most difficult parts of chronic illness, and living a COVID-competent lifestyle, is the isolation. The more we can connect and tell our stories, the more we can step out into the light and shift norms, the more powerful we are.

9 months ago 2 0 1 0
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Why We Mask: Solidarity, Creativity & Community Care in a Not-Quite-Post-Pandemic World At a backyard cookout this spring, Emily Kindschy did something she hadn’t done in several years: she took off her mask in a crowd. “We were standing at a distance, [...]

New article out today on disability, pandemic fatigue, trauma, and masking in the Providence Eye! pvdeye.org/why-we-mask-...

9 months ago 2 2 0 0

Why do leaf blowers sound so aggressively angry to me? Definitely the chest-pounding alpha douchebags of the garden shed.

9 months ago 1 0 0 0
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Illness is metaphor Hat tip to Susan Sontag, whose classic essay I do not reference. Today, my country rallies against kings.

My body, in its hours of need, will not be abandoned.

thisisrachel.substack.com/p/illness-is...

10 months ago 2 0 0 0

Roses are red
chronic illness sucks
I'm reaching the point
where I give ZERO F***S

1 year ago 5 0 0 0

Thanks for the update <3

1 year ago 2 0 0 0

attn: everyone who says "why don't Americans take to the streets?"

1 year ago 18 1 1 0
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Dean Spade’s Mutual Aid offering hope and solidarity this Caturday.

1 year ago 3 0 0 0

MEOW.

1 year ago 1 0 0 0
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Handsome girl.

1 year ago 2 0 0 0

What’s keeping y’all going in these self-satirizing, trauma-bombing, fash-forward times? I’m cooking, imperfectly practicing rest, rereading Emergent Strategy, speculating about utopia with friends, clumsily building community, lying in sunbeams with the cat, and following AOC on social media.

1 year ago 4 0 1 0
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It’s important to know that a lot of productive activity is happening in person and offline, too.

Not all of it can be broadcast online, but we’ve had hundreds of people showing up to our trainings, mobilizations, and more.

Keep going. Tyranny is eroded by a sea of small acts. Everything matters.

1 year ago 120756 19257 2325 881

Dissociated cutie!

1 year ago 2 0 0 0

So cool!

1 year ago 1 0 0 0

Thank you, very helpful!

1 year ago 0 0 0 0

Thank yooooou for the BlueSky orientation kit!!

1 year ago 1 0 0 0
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TARYN SIMON A COLD HOLE ASSEMBLED AUDIENCE | MASS MoCA An ambitious exhibition featuring two new installation-based commissions by artist Taryn Simon, which activates the rituals of applause and the cold water plunge.

I don’t know if this was the scariest, but it was def one of the most visceral! (Great question btw and also MEOW 😸) massmoca.org/event/taryn-...

1 year ago 0 0 0 0

Neato!! Thanks!

1 year ago 0 0 1 0

I didn’t really Twitter even before it was taken over by supervillains, but I’m willing to give this a try! Greetings, friend!

1 year ago 1 0 1 0

Would love to hear others’ opinions, experiences, and thoughts.

1 year ago 1 0 0 0

Or are you kind of a different social media animal with different qualities that doesn’t really fill the needs that icky icky Meta still, somehow, kinda fills—for connecting with other chronically ill folks, for keeping in touch with acquaintances who I value but am not close with.

1 year ago 4 0 1 0
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Hello, BlueSky! Tell me about you. Meta has all the qualities of a is a lurching, flesh-eating Romero zombie and I want to leave. So…Is anyone here? Is this a viable alternative to the ick of Facebook and Instagram? (1 of 2)

1 year ago 5 0 4 0
Welcome | NIWRC

Impermanence means that the future is unknowable.
Emptiness means that we're always in good company.
Life as I know it may come to a screeching end tomorrow, and also it may not.
A resource for reparations today (and other days): The National Indigenous Women’s Resource Center:
www.niwrc.org

1 year ago 0 0 0 0

Everyone is talking about Parable of the Sower but I keep thinking of Kindred, Dana jerked backward and forward through time, looking back at herself across the impossible chasm of centuries, weighing incalculable harm from telescoping perspectives of past and future.

1 year ago 0 0 0 0

“I bear the wounds of all the battles I avoided.” ~ Fernando Pessoa (from The Book of Disquiet).

Maybe the guiding principle for the next four years in the US is to view the present through the eyes of a hypothetical future. How will we want to have behaved in these times?

1 year ago 1 0 0 0