Floppy

Alyssa Graybeal

Description

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?

Sujets

• People with Disabilities
• Personal Memoirs
• Philosophie et théologie
• Women
• Mathematics and fiber arts
• Chronic (medicine)
• Immigration to Canada
• Connective tissue disease
• Fiber art
• MCAS
• Memoir
• Ehlers?Danlos syndrome
• Pacific Northwest
• Disability
• Marfan syndrome
• Woman
• POTS
• Genetic disorder
• The Women
• EDS
• Pot
• France

Informations

• Publié par: Red Hen Press
• Date de parution: 30 mai 2023
• Nombre de lectures: 0
• EAN13: 9781636280981
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

More Praise for
Floppy
Tales of a Genetic Freak of Nature at the End of the World
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
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
Alyssa Graybeal is a genius. This coming-of-age memoir with its sick queer perspective will remind you that sensitivity is a strength. Her voice is refreshingly honest like a great weird friend; you can trust her to tell the truth even when it’s painful.
—Ariel Gore, author of We Were Witches and The Wayward Writer
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
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, Associate Professor of Anthropology, UC Santa Cruz
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 and Knocking Myself Up

Floppy: Tales of a Genetic Freak of Nature at the End of the World
Copyright © 2023 by Alyssa Graybeal
All Rights Reserved
No part of this book may be used or reproduced in any manner whatsoever without the prior written permission of both the publisher and the copyright owner.
Book design by Mark E. Cull
Library of Congress Cataloging-in-Publication Data
Names: Graybeal, Alyssa, 1982– author.
Title: Floppy : tales of a genetic freak of nature at the end of the world : a disjointed memoir / Alyssa Graybeal.
Description: First edition. | Pasadena, CA: Red Hen Press, [2023]
Identifiers: LCCN 2022049428 (print) | LCCN 2022049429 (ebook) | ISBN 9781636280974 (paperback) | ISBN 9781636280981 (ebook)
Subjects: LCSH: Graybeal, Alyssa, 1982– | Graybeal, Alyssa, 1982—Health. | Ehlers-Danlos syndrome—Patients—United States—Biography. | Ehlers-Danlos syndrome—Popular works.
Classification: LCC RC580.E35 G73 2023 (print) | LCC RC580.E35 (ebook) | DDC 616.7/7—dc23/eng/20221202
LC record available at https://lccn.loc.gov/2022049428
LC ebook record available at https://lccn.loc.gov/2022049429
The National Endowment for the Arts, the Los Angeles County Arts Commission, the Ahmanson Foundation, the Dwight Stuart Youth Fund, the Max Factor Family Foundation, the Pasadena Tournament of Roses Foundation, the Pasadena Arts Culture Commission and the City of Pasadena Cultural Affairs Division, the City of Los Angeles Department of Cultural Affairs, the Audrey Sydney Irmas Charitable Foundation, the Kinder Morgan Foundation, the Meta George Rosenberg Foundation, the Allergan Foundation, the Riordan Foundation, Amazon Literary Partnership, and the Mara W. Breech Foundation partially support Red Hen Press.

First Edition
Published by Red Hen Press
www.redhen.org
For my fellow zebras
AUTHOR’S NOTE
This is a work of creative nonfiction. The events described in this book are true, but I reconstructed details and conversations from my memories of them. Thank you to my real-life friends and family members, whose memories of the events described may be different than my own. Some identities and locations have been changed or are composites to protect privacy. Some timelines have been condensed or expanded for readability.
CONTENTS
PART I
The Shins of Shame
How to Dress for Montreal Winter
Wilting Flower Girl
PART II
Framed
Little Miss Perfect
Puppeteers
The Sugar Situation
Biker Chick Wedding
Trust Me
Halfway Hot Springs
Lucky Fall
Saving Ida
Pitchers and Belly-Itchers
DIY or Die
Spinning a Tale of Chest Pain
Sockie Baby
Hurricane Earl
Eye-Masked Outlaws
On a Mission
Kudos
Denial Bonfire
The Power of Now
Fractal
Swearing to the Queen
PART III
Genetic Freak of Nature
Revolving Soul Mates
Girls Who Wear Glasses
Fold Bathtub
Sibling Rivalry
Untangling
Waiting for the Bus in Lyon
The Marfan Specialist
Waiting for Godot
The Lavender Menace
Escape Babies
Reality Check
Unfair
Cauliflower Fractal
Beachcomber
Afterword
Acknowledgments

LIST OF MEDICAL ACRONYMS
EDS : Ehlers-Danlos syndrome. A connective tissue disorder that affects collagen; comes in various flavors.
MCAS : Mast cell activation syndrome. An immune response that releases an overabundance of mast cell mediators into the bloodstream; allergies to everything.
ME/CFS : Myalgic encephalomyelitis/chronic fatigue syndrome; linked to mitochondrial dysfunction.
POTS : Postural orthostatic tachycardia syndrome. A type of dysautonomia that messes with blood pressure and heart rate upon standing.
Part I
THE SHINS OF SHAME
My neon green scrunchie flew out of my unkempt ponytail and landed three steps below me. I’d fallen again. My ankle twisted and knee bent, aligning my shin to knock on the edge of the treads as I slid down the polished stairs. When I closed my eyes, adult voices echoed in my head. Be more careful, Alyssa.
Then my own voice of frustration. I am!
I’d caught my weight on the banister, so my wrist stabbed too. I held it close to my chest as I sat there, running my fingers over the bumpy friendship bracelet I’d knotted myself. I held my breath and pulled up my pant leg to inspect my shin, bracing myself for exposed flesh and pooling blood. But my shin hadn’t split open, only grown purple with a fast bruise.
Exhale. No stitches required.
My scrunchie glowed bright against the dark wood, rippling in my vision like glow-in-the-dark seaweed at the bottom of the ocean.
Out the transom windows on either side of the front door, the dogwood tree in the front yard bloomed pink. I wouldn’t need to call my mom at work to have her take me to the emergency room. After school, I’d latch-keyed myself into the gray house with black shutters that didn’t close, one block outside the old city limits of Vancouver, Washington. It was a suburban street—no sidewalks, big yards—but not a subdivision. The houses didn’t match, and towering evergreens shaded the asphalt. Red rhododendrons as tall as the house sent gnarled shadows onto the living room carpet in the afternoon. In the backyard, if the wind blew just right, the smell of rotten eggs wafted down the Columbia River from the Camas paper mill. Planes flew so low on their descent into the Portland airport across the river they rattled the house.
Falling on the stairs beat falling down the stairs, which was what usually happened. The sound of my single thud reminded me of all the other times I’d actually fallen down every tread like a bag of disconnected bowling balls. By ten, I’d made half a dozen trips to emergency rooms for little black stitches on my shins, losing count after 329.
With no one in the house but me, my little brother at a friend’s house, I didn’t have to pick myself up off those stairs as fast as possible to prove that I wasn’t too much, wasn’t too sensitive, hardly felt any pain at all. Alone, I had the privacy to hurt. My wrist stabbed; my shin bloomed with a dark ache; my twisted ankle burned. I’d just been going downstairs to make myself an Eggo.
My lucky calico cat, Lucky, paused to sniff my errant scrunchie on her way up the stairs to rub against my knees. She followed me to the school bus stop in the mornings. I’d wanted the other kids to see how, even though I didn’t talk much, animals gathered around me like a magnet. But stealthy Lucky; when the school bus squeaked up and flipped out its stop signs, only I knew she watched from her perch in the rhododendrons across the street.
I pet Lucky and calmed my adrenaline rush.
I was okay. No stitches required. But why me?

My hands didn’t split open as easily as my shins, but my palms wrinkled like sheets of printer paper crumpled into tight balls and reopened, even more wrinkly than those of my great-grandmother. I worried that the rest of my skin would follow, possibly sooner rather than later, making me look a hundred years old before I even got to be a teenager.

I mean, I knew why me. My clumsiness was genetic.
I’d recently been examined by a room full of doctors who confirmed what I already knew: Something was seriously wrong with me. Something so wrong that even though my parents had been divorced since I was eight, they’d both accompanied me to the appointment. I’d never been in such a crowded exam room. A half dozen silent doctors