One of the first books to explore the emotional landscape of living with Ehlers-Danlos syndrome from a patient’s perspective; a playful story of falling down, getting back up again, and realizing you should have gone to the hospital sooner.
When ten-year-old Alyssa is diagnosed with the rare genetic connective tissue disorder Ehlers-Danlos syndrome, she vows not to let it stop her. Unfortunately, her efforts to avoid being “too sensitive” lead her to neglect not only her health but other aspects of her life as well. Twenty years later, she’s finally forced to confront the reality of her condition head on. When she finds herself tangled in an unwieldy combination of chronic pain, a library job for which she is particularly ill-suited, and her wife’s mystifying health problems, her body starts to unravel in ways she can no longer ignore. If pushing through is not the answer, what does homecoming to her floppy body even look like?
Alyssa Graybeal is a genius. This refreshing coming-of-age memoir with its sick, queer perspective will remind you that humor is essential and sensitivity is a strength. Graybeal’s voice is like a great, weird friend, and you can trust her to tell the truth even when it’s painful.
-Ariel Gore, author of We Were Witches and The End of Eve
In a spiral through time, Graybeal knits a wise, generous story of resilience and beyond. It’s about alignment and aligning–with the body, with every body. It’s also a story about connection and connectivity and a larger ideal of care. With a hard-won and ever-present sense of humor, this is a powerful story with a cure for the ableism that ails us all.
—Jenny Forrester, author of Narrow River, Wide Sky and Soft-Hearted Stories.
In these exquisitely written recollections, Alyssa Graybeal spins a richly imaged and often hilarious story from the fibers of her own quest for life while navigating the challenges of having a rare genetic disorder. Graybeal’s sharp wit and keen attention to details makes reading Floppy an intimate journey across the Canadian landscape to the Pacific Northwest and into a queer body with Ehlers-Danlos syndrome, a condition that wreaks havoc on connective tissue. An exemplar on how to DIY a beautiful life, despite having a body insistent on falling down and coming apart. It’s both a tale of self-care and a call for change in a healthcare system that has historically gaslit people with chronic illnesses.
—Rebecca Fish Ewan, author of By the Forces of Gravity and Doodling for Writers
Graybeal, a self-labeled genetic freak who was diagnosed as a child with Ehlers-Danlos syndrome, pulls us into the landscape of her floppy body with precision and grace. Brimming with queer love, cats, and the awkwardness of being human, Floppy is a roadmap for how we must learn to fight for the truth of our experiences, and how we can love the broken, beautiful body-homes we all live in.
—Laraine Herring, author of A Constellation of Ghosts: A Speculative Memoir with Ravens
Graybeal performs the remarkable literary feat of narrating complex childhood experiences of embodied uncertainty and suffering in a voice that is sincere—but never precious—and critical—but not jaded. For people with EDS and their loved ones, this book is a rare blessing, the first of its kind to address not the “how-tos” of living with this condition but the emotional landscape it creates. The importance of this writing for the future of this community cannot be overstated.
—Megan Moodie, author of WE WERE ADIVASIS; Associate Professor of Anthropology, UC Santa Cruz