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

by Johanna Hedva

In care, we know our limits because they are the places where we meet each other.

The other reason is because it reminds us how the world actually is, not how we would like it to be.

When you’re trying to make the world not only a better place but an entirely new one, being depleted, discouraged, and dismayed seems wrong. Where does fatigue fit into insurrection?

To those on the outside, activism looks insufferably self-serious, self-righteous, and is always prone to hypocrisy.

In my opinion it’s better to risk hypocrisy, to try and fail, try and make mistakes, try again, than not to. What is gained, proved, accomplished by the not-trying? What happens by doing nothing?

I want to—I must—make room for what I know to be true of activism: that it is abundant with, propelled by, and forged through the ways in which it fails, far more often than its successes.

I prefer the idea of failure being neither good nor bad, just a fact of life, what comes after what is done.

I like thinking that activism will always fail, because it means that the decision to take action, to act as though what we do matters, even in the face of certain defeat, is its own purpose.

She’d also shake her head severely—no—when I’d ask her if, one day, we might visit her homeland together. As if I were asking her to return to a haunted house.

You asked me a lot of questions in your letter, and they all felt like questions I ask myself.

Oppression, domination, and violence live first and foremost in our bodies. As much as they are ideological systems, their effect is always material; they deal in matter—flesh, bones, blood.

It can feel like you’re speaking a language that your doctor not only can’t understand, but one they care not to hear.

It was a struggle of making myself not only have a presence, of making myself be seen and heard and understood, but of persuading him that mine was an important presence, one that mattered, one that he had to consider as much as I had to consider his.

trust is the most important thing a doctor and her patient can share, because trust is what keeps people from falling apart, and it’s what puts broken ones back together,

in the cases where the brokenness is all there is, trust can offer a small encouragement that the brokenness is bearable—

not because it will diminish the distance, but because it will honor it. It will acknowledge that it’s here.

stages of intimacy and equal exchange together. It’s that you represent a discipline that is supposed to be deserving of trust; I’m supposed to trust you simply because you are a doctor.

As much as a writer has to learn to write, they must also learn how to be read.

There are preconceived notions, stereotypes, habits of thought, stigmas, and assumptions that are not on the page but somewhere in the air between us. This is the problem a writer faces when their subject has been wrapped in an ideology that is still unconscious in society’s mind.

Remember how ideologies work: as much as they settle into your bones, they also slyly structure your world.

“Know amazedly how often one takes his madness into his own hands and keeps it.” LORINE NIEDECKER

“No names have been changed to protect the innocent. They’re all fucking guilty.” LYDIA LUNCH

The best thing I got from my relationship with Z was his description of Alvarado Street in Los Angeles being like a river, how the traffic just swims down it.

there can be many realities in the world but perhaps not many worlds in reality.

At that point, my definition of “the world” was that it’s the thing that holds you. Until it doesn’t.

that is how the world is structured. Our collective delusion.

But the burden of causality is not everyone’s burden.

For some, the shattered glass on the floor doesn’t stay shattered. Well, it does, but it’s not ascribed to be their fault. They are not expected to pick it up. And what do we do when the shattered thing is a body? And your own? Who picks it up then?

When depressed men are given antidepressants, they swing into mania, but since manic men are hard to distinguish from Geniuses who are changing The World, society tends to support their manic behavior until it stops producing a culture that can be capitalized upon.

It’s what has built and paid for the house of their identity, so they feel obligated to live there.

That line between knowing who you are and knowing who you are not is never a straight one.

“How much of the world’s perception of illness are you willing to forsake?” In other words, Don’t call the fucking cops.

Illness is not—despite The World telling you it is—only a personal, individual experience of pain, trauma, and limitation.

It’s the look of someone who feels humiliated but keen to turn his humiliation into a weapon.

They asked me why, for so long, I kept wanting patriarchal power, for the patriarchy to perceive me in a way they deemed legitimate, why I kept needing to fit myself into such a world. The best answer I could summon was that, for nearly my entire life, I didn’t understand that I could want something else.

My audience, my reader, my kingdom:

Representation is always also a negation, and narrative is always a fiction. Morgan Parker has noted: “Fact is fiction with state power.”

Some of us have been deemed unreliable narrators, and some of us have had our truths recast as fictions, and some of us have been defined not by our crises, but as crisis itself.

We have been each other’s archive and aim.

pain is the price I must pay to be awake to life.

Uma points out that the most well-built care networks, the most abundant allowances for care, tend to form around activities that are criminalized—taking drugs, having deviant sex, being trans, being poor, being disabled—because of the attendant danger.

At some point in the dream, I realize I will need to murder him, that he won’t stop until he’s dead.

One of the most universal languages is the language of fists and power and dominance and aggression and violence. I was socialized as a woman, which means I learned this language but was told to never speak it.

There was the house she lived in, and it did not protect her, and so how could she be tasked to build one for me?

(Sometimes I think heterosexuality is the kinkiest thing there is because it’s always about how the most normie power represses pleasure, and the pleasure is in the repression itself. Ugh!)

We can use acts of vengeance, of violence, to ask for care.

I don’t think we can plan for a better world without including, giving language to, finding ways to house all the ways we like to push each other’s faces into the dirt.

Turn your sternum toward mine, risk your rib cage, open your mouth. Make that little auditorium with me, a house, a stage, a dream.

a core fact about care, and kink, is that it requires strong boundaries to work well.

What I love about kink is that it starts from the premise that we’re all freaks and then asks how to support that.