How to Tell When We Will Die: On Pain, Disability, and Doom

by Johanna Hedva

At the heart of both kink and care is the darkly throbbing fact of power: in order for kink to work, power has to not only be acknowledged but engaged with, kept close, within sight and mouth at all times—but power is nowhere discussed in the context of care, and I don’t need to tell you why that is a mistake.

As there is any kind of porn available on the internet for any possible kink, care can look a million different ways too. It can be dirty, it can be full of rage, it can happen in a mosh pit, it can leave shit stains on the sheets.

what if the fuckups they will inevitably make in those moments were met, not with shame or punishment, but a good-natured guffaw?

I don’t want the abled community to think that all we care about is words.

Lily Cox-Richard said when I asked her what she meant by care: “It’s the intersection of attention and intention.”

“The flu is like something is borrowing nourishment from your body. You don’t want to make the loan but you can. This is different. Something has broken into your body with murder on its mind.”

In astrology, the asteroid Chiron is said to represent one’s greatest wound, a wound that will never heal. The only respite from Chiron is that one might heal others through the knowledge the wound has given.

I also tell them that the definition of the word “kairos” in modern Greek is merely “weather.”

I know transness is the chasing of an embodiment at which one will never arrive; or how, no matter my ethical rejection of it,

I do not believe that artistic strategies are frivolous, that in despairing times art is a luxury (the logical conclusion of which is that art only belongs to, is for, ought to be made by those for whom despair does not exist. Who is that?). What do we have if we do not have art?

Why is a man losing his mind and caterwauling with need so much more sympathetic than a woman losing hers? Is it that a man’s self-destruction is something we feel moved to prevent, while a woman’s feels inevitable, so why bother to try to stop it?

When you are trying to get somewhere that is not where you come from, from where you are starting, you need a compass.

showed me that it was possible, purely through sheer force of appetite, to become who you wanted to be rather than what you’d been born into.

You have to be willing to be poor and invisible until you’re forty, and during that time, you only make the work you want to make, only take the jobs that give you the most creative freedom. You say no to everything else. You do not compromise yourself. Least of all for something as stupid as money. If you do this, by the time you’re forty, you will have a body of work that is absolutely who you are. And you will start to be recognized for it. It will pay off. It will be worth it.

Negative examples help too—they show you what not to do, what not to be like, what you don’t have to accept, what you can refuse.

show how Sontag’s spirited propensity for life was often propelled by her need for a guide to show her the way out of where she came from, or had ended up.

One can feel Sontag’s apprehension as motivated by her not wanting to be reducible to her body, and, in many ways, she had good reason for this. The illnesses and madnesses and disabilities that swarm around so many writers and artists—especially the women and queers and non-white—become a kind of perfume to their legacies.

Patriarchy admires sick people most when they appear unbothered by their sickness—similarly to how it rewards women who “act like men.”

The mythology of illness is a sort of lubricant for pathos, poignancy, and meaning, as is death.

Will I be mostly known, not for my talent, my craft, my ambition, but the fact that I suffered and wrote about it? That my body fought me, that death fought me, and even though I fought back, that I lost?

I am already disappointed by what I’ve failed to accomplish with this book.

Capitalism is an evil genius. It has succeeded in making us think there’s a difference between our needs and our desires— but it makes us pay for both.

Lara Mimosa Montes, that said: “Not prolific. Just afraid of dying.”

I place goals in front of myself that hone the direction of each day, and the aim of them that guides me is engine, yes, but also escape, giving me something to focus on so that I might tune out not only distractions or detours but all that is difficult—for there is a lot—about the mechanical clicking-forward of life. I like that the aim of these ambitions can organize my life.

Without them I don’t know how I’d live through what I’ve got to live through.

Need seems to cheapen ambition, dirty it, make it heavy with the earthly concern of trying to survive;

When does it happen that we cross over from needing a meal, a home, a job to pay the bills, to wanting a marker of prestige, evidence of plenitude, to following a dream beyond scarcity, yearning toward a life that might give us something more?

Another way to ask this question: Is ambition that’s propelled by a need to survive somehow not ambition? Or is it—under capitalism—the only kind?

Icarus flew too close to the sun because he was trying to flee the conditions he was born into.

I’d started to notice that ambition was a trait said to belong to a certain kind of person—the Zuckerbergs and Musks. They are reaching for the sun. They want to thrive. But what about a fugitive slave? Does he have ambition?

We prioritize beauty and pleasure and joy because no one else is going to do that for us.

At some point, I started talking about “crip diva solidarity,” the activism that works toward supporting each other to be divas. Girl, tell them what you need—don’t ask, state. You need more time, a bigger room, a higher fee. You need a care person to accompany you, you need a deadline that is not ridiculous, you need better working conditions.

I’m sorry we haven’t spoken in so very long, I’m sorry I have not been able to—but I do feel we were always communicating. I feel you speak to me in my body, in how I hurt, but also the beauty of the things you taught me to notice, suncatchers, animals, the ocean, waves, stars. Please know that I love you and I’ll miss you.

The feelings are still subdued. I keep thinking, I’ve spent so long already mourning my mother. So many years grieving for what never was or could be, grieving for what was inevitable.

My body’s on fire, mind in a pain fog, and yet somehow I am not depleted. Death has made me gentle.

I’ve been feeling ruined by how few memories I have of her in the last decade, and how so many of them are painful.

But that story only worked if they agreed with it.

The Buddhists call addicts “hungry ghosts.” Hungry ghosts have a stomach the size of a mountain and a throat the size of a needle’s eye.

Deborah Levy has said that the things we don’t want to know are the things we already do.

The trouble with empathy is that asking someone to have it for an experience they haven’t yet felt in their body is futile. Empathy can only be engendered when it’s embodied,

empathy is not knowledge but the curiosity to know.

What I mean is: I was surprised to learn how much I loved them, which made me know how much I loved my mother, and how much I loved myself.

They have induced us to think that the failure to lead a life of wealth, ease, comfort, and privilege is because that person just couldn’t get it together, couldn’t pull themselves up by their bootstraps, wasn’t willing to put in the work.

The body is never going to be solvent; it’s always going to need too much, be too expensive, not do everything we want it to, hurt more than we can bear, and then deteriorate until it can no longer move.

And yet we’ve built our world as if this fact deviates us from where we should be. We’ve framed care within the context of debt—where my “giving” care to you means I’m depleting my own stash, and your “taking” from me means that now you owe me—and although we’ve made debt into an index of our deficiency, we’ve also made it the only possible condition of life under capitalism.

To be alive in capitalism is by definition to live in debt, and yet we’ve defined debt not as a kind of radical interdependency, as the ontological mutuality of being alive together on this planet—which it is—but as all that reveals our worst, what happens when we fail, a moral flaw that ought to be temporary and expunged. By doing this, the omnipresence of our need is framed as a kind of weird bankruptcy that happens only to the weak—

The logic of capitalism states that the person who needs support from society is a burden on that society, but this logic can only work when the premise holds that our natural state is one of surplus—and it is not.

Fire emoji here

I want accessibility to be seen as the political movement it is,

ableism, because it’s the ideology that most sweepingly invents the false hierarchy of that which can be deemed normal, which is to say, who can be deemed not normal.

“If you didn’t have to do all this work about access, all this labor, send all these emails, get into all these fights, what would you do? Like, if you were just—welcomed. Supported. What would you make? What is your actual work?”