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?
About the Author :
Alyssa Graybeal is a queer writer and cartoonist whose work
focuses on the emotional landscape of living with chronic illness and
disability, in particular the connective tissue disorder Ehlers-Danlos
syndrome. Floppy: Tales of a Genetic Freak of Nature at the End of the World
is her first memoir and won the 2020 Red Hen Press Nonfiction Book Award. She
has a BA from McGill University and an MLIS from Dalhousie University, and she
works as an editor and writing coach. You can find her online at www.alyssagraybeal.com. She lives in
Astoria, Oregon.
Review :
"Floppy is an unflinching yet charmingly written memoir of one person's negotiations with love and body, family and geography, the internal and the external. I very much enjoyed it."
--Michelle Tea, author of Against Memoir
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
