'Writing is how I make sense of my experiences'

Astoria author Alyssa Graybeal’s debut memoir, “Floppy,” won the Red Hen Press Nonfiction Award in the aftermath of an intensely painful brain injury. “It seems a little ridiculous in retrospect, like maybe I could have waited a couple years to write the final draft? But no. I honestly wasn’t sure if I would survive, and it was important to me to get the book out there,” she said.

“Floppy” is set for release Tuesday. Graybeal’s brain injury required her to lie flat for a year, to prevent triggering strokes due to complications from Ehlers-Danlos Syndrome — a chronic illness she was diagnosed with as a child.

Ehlers-Danlos Syndrome manifests in hyper-mobility of joints and affects the skin, joints and blood vessel walls. Symptoms can range from “floppy” joints to life-altering complications.

Graybeal’s memoir explores the condition from a non-medical perspective —which is rare. The book, told from a patient’s point of view, leads readers to the first steps of unlearning ableist ideas and challenges the notion of productivity as the most defining feature of a good life. “There is no one ‘right’ body or set of capacities to have — it’s vitally important to uproot ableist ideas, and that’s a challenge when ableism is so ingrained that people don’t even really see it,” Graybeal said.

Born and raised in the Northwest, she spent 12 years in Canada. In 2015, she settled in Astoria. “I connected deeply with the weather and landscape. I love the ocean and the rain, which is lucky because I’m literally allergic to the sun, and that reaction can weaken connective tissue. I have a history of strokes caused by artery dissection, so living in a rainy place is a matter of survival,” she said.

Writing from her home office allows Graybeal an ergonomic set-up to keep her legs elevated for most of the day. “I have a type of dysautonomia that makes my blood pressure spike dramatically when I’m upright; I usually write from my recliner,” she said.

But even amidst a solitary work setting, she emphasizes the need for recognizing interdependence on others. “Writing community is everything. My writing didn’t really take off until I sought out other writers. There’s that pernicious myth about the solitary artist up in a tower being a genius all by themselves,” she said, “and that’s just not true.”

Graybeal has always been tied to the written word in one way or another. With a master’s degree in Library and Information Studies, she has worked as a writing coach and editor.

And while she helps others through their writing projects, Graybeal sees crafting compelling stories as a distraction from chronic pain. “I feel uneasy if I don’t have a writing project going. Writing is how I make sense of my experiences,” she said.

For those with Ehlers-Danlos Syndrome, Graybeal hopes that “Floppy” feels like refreshing validation. People with chronic illnesses, she said, navigate a lot of disbelief or misunderstanding from society around them. “I’m not ‘sick’ in the sense that I’m going to someday get better,” she said, adding that the condition is genetic.

“This is just how my body is. It’s fragile. I’m disabled, but I’m also healthy in the sense that health is a state of balance. For my body, I’m about as healthy as I can get,” she said.

Graybeal reasons that “Floppy” has gathered anticipation on must-read lists, including as an anticipated feminist book according to Ms. Magazine, because of its focus on owning physical reality.

“People with chronic illness and disability ... often get significant pushback from people around them, who might think they’re exaggerating their symptoms,” she said. “It’s empowering to say that your own body’s experiences matter.”