“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.” —Maggie Nelson author
of The A rgonauts 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. 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.
