How to Tell When We Will Die

On Pain, Disability, and Doom

Johanna Hedva

Hedva’s writing and vision acknowledges hard realities as much as it celebrates joy and being, questions as much as it empathizes, quotes Susan Sontag and references astrology alike. From start to finish, their voice is a sincere and passionate disruption to the status quo. How to Tell When We Will Die is surely the beginning of a long, thoughtful, rebellious, doom metal dialogue that will take us all to a new and wonderful place.

- Lena Waithe, Rishi Rajani, and Naomi Funabashi, Hillman Grad Books

The long-awaited essay collection from one of the most influential voices in disability activism that detonates a bomb in our collective understanding of care and illness, showing us that sickness is a fact of life 





Page count




Sale date

September 3, 2024


6 x 9

About the Book

In the wake of the 2014 Ferguson riots, and sick with a chronic condition that rendered them housebound, Johanna Hedva turned to the page to ask: How do you throw a brick through the window of a bank if you can’t get out of bed? It was not long before this essay, “Sick Woman Theory”, became a seminal work on disability, because in reframing illness as not just a biological experience but a social one, Hedva argues that under capitalism—a system that limits our worth to the productivity of our bodies—we must reach for the revolutionary act of caring for ourselves and others.  

How to Tell When We Will Die expands upon Hedva’s paradigm-shifting perspective in a series of slyly subversive and razor-sharp essays that range from the theoretical to the personal—from Deborah Levy and Susan Sontag to wrestling, kink, mysticism, death, and the color yellow. Drawing from their experiences with America’s byzantine healthcare system, and considering archetypes they call The Psychotic Woman, The Freak, and The Hag in Charge, Hedva offers a bracing indictment of the politics that exploit sickness—relying on and fueling ableism—to the detriment of us all.   


With the insight of Anne Boyer’s The Undying and Leslie Jamison’s The Empathy Exams, and the wit of Samantha Irby, Hedva’s debut collection upends our collective understanding of disability. In their radical reimagining of a world where care and pain are symbiotic, and our bodies are allowed to live free and well, Hedva implores us to remember that illness is neither an inconvenience or inevitability, but an enlivening and elemental part of being alive. 


“This is a book for the moment and for the ages. It’s questing, pissed, propulsive, funny, generous, pervy, and original—full of love and pain in all their entwined glory. Hedva lays waste to solidarity and care as buzzwords and returns them to us enlivened with all the blood and paradox they deserve. I will be thinking in the wake of this important collection for a long time, no doubt alongside so many grateful others.”

- Maggie Nelson, author of The Argonauts

“Hedva, a committed reader of queer and female artists, creates, in reaction to their influences, a new construction of themself: a nonbinary and Asian disabled intellectual, as a lens through which to see the world. By centering their experiences into a cohered perspective, they make a contribution on the fronts of fragility and rage, justice and systems, desire and limitation that expands pre-existing frameworks for conceptualizing human experience.”

- Sarah Schulman, author of Let the Record Show: A Political History of ACT UP New York, 1987-1993

“Johanna Hedva’s new book How To Tell When We Will Die is monstrous good. How did they write the most metal kink crip book about death, survival, crip viscera and reality ever that we need right now? This book is for grown up runaways who stay feral and awake in theafterfuture we inhabit, people who desire and are rare delights, anyone with a body or a mind of any kind, the crips who GET IT and NEED IT and everyone else who does too. It’s exactly what we need right now and goes so beyond the 101 that it blew my brain out of my ears. As we live into the disabled future and claim our crip crone crowns, this book is delicious required reading.”

- Leah Lakshmi Piepzna-Samarasinha, author of The Future Is Disabled

“A tremendous work of thought and feeling, packed with profound insight and illuminated throughout with a radical vulnerability that transmutes before your eyes into phenomenal power. Important and revelatory.”

- Michelle Tea, PEN-award winning author of Against Memoir: Complaints, Confessions & Criticisms

“Like many, I have been waiting patiently for Johanna Hedva’s essay collection and How to Tell When We Will Die comes now at the perfect moment in the culture. A decade in the making, Hedva adds to and updates the classics of their oeuvre—but the book goes beyond even that. We journey from their body and mind to learning about their mother, ancestors, relationship to biculturalism in all its forms, their take on queerness and its intersection with illness. There is so much beauty and horror and tenderness and humor and mysticism in these pages that reading it feels like living infinite lifetimes within the topic dearest to me, that should be dearest to everyone. This transcendent collection operates like a kaleidoscope of memoir, manifesto, cultural criticism, even found object, and how Hedva tackles and untangles every aspect of their identity made me feel like just maybe the people I am rooting for most will win in the end!”

- Porochista Khakpour, author of Sick: A Memoir

How to Tell When We Will Die is a book that will rearrange you. With breathtaking candor and rigorous insight, Johanna Hedva offers a manifesto for accessibility as a meticulous practice of remaking the world. At the same time, Hedva refuses the clarity of any template that doesn’t allow for the complications of desire and need, kink and care, illness as part of insurrection. Granular and kaleidoscopic in its relentless search for embodied truth, this book twists and turns in pain and ecstasy, shifting form to make room for revelation.”

- Mattilda Bernstein Sycamore, author of Touching the Art