The Connective Tissue of Empathy

By Lara Lillibridge

Floppy: Tales of a Genetic Freak of Nature at the End of the World by Alyssa Graybeal

Alyssa Graybeal begins her memoir with a list of acronyms for a host of medical conditions, the central one of which is Ehlers-Danlos syndrome. This inherited disorder affects the ability of one’s connective tissue to hold the blood vessels, organs, and bones together, which does not cause problems for 99% of humans. For Graybeal it does. Ehlers-Danlos makes her “floppy”; she is prone to accidents as this disease degenerates her tissues. These beginning acronyms are certainly helpful—I was familiar with a few of them, but not all—but it’s also a succinct way to set the stage for the narrative to come as they slowly unfold in her life. We enter the book braced for an obscure experience—though perhaps not as unusual as we might think.

One of the benefits of creative nonfiction is that it allows us a window into another’s experience and rescues us from asking nosy awkward questions of people in real life. I was curious to read this book because a friend with Ehlers-Danlos syndrome is in and out of a wheelchair. Of course, each person’s experience with a shared disability is different just as every queer person’s experience is different—another aspect of this narrative that drew me in. Graybeal has two distinct marginalized identities to contend with, both resulting in vulnerabilities and marginalization. Yet her memoir has little self-pity or anger. Frustration, certainly, but she’s also humorous and self-deprecating, traits very relatable.

Floppy alternates between the child narrator’s experience and the older, reflective narrator. This contrast lets the older narrator shows us how the child couldn’t realize the severity, and really needed to, of her condition. But more than a disability or a queer story, it is also about living with loss, growing up different, and finding one’s place in the world—something the narrator didn’t fully expect since she believed the world would end on December 22, 2012, according to the Mayan calendar’s prediction, when she was thirty. She found comfort in the end-times, writing, “I’d be okay after all. The apocalypse would get me before I degenerated. […] With good luck we’d have a few years of quiet, off-the-grid living before we finally died from nuclear fallout or environmental catastrophe.”

I related to the narrator as a clumsy child who never quite fit in—though I was lucky in that my normal awkwardness only resulted in bruises and cuts, not hundreds of stitches and scars.  Graybeal writes, “By ten, I’d made half a dozen trips to emergency rooms for little black stitches on my shins, losing count after 329.” I pictured myself as well tripping on the stairs, banging into furniture, or having one of a zillion other mishaps that landed Graybeal in the emergency room. So, too, did I relate to the emotional wounds of a child with divorced parents, growing up in the shadow of a new family, left out of family photos and not fully included.

I was also excited to see a kind of queerness close to my own—something not as traditionally butch as I see in many memoirs (not that we don’t love our butches)—but the sort of feminine tomboy seems underrepresented. Just as there are many ways to inhabit a body, there are myriad ways to perform gender, and Graybeal’s child-self mirrored mine, except my pajama-like outfit was blue floral, not pink, and my sport was kickball. Graybeal writes: “Just because a girl wears pink floral pajamas to softball practice doesn’t mean she’s not a good player.” “Flowers are freaking pretty.”

Beyond differences, many will recognize in Graybeal’s coming-of-age narrative ways they, too, fretted over the perfect date outfit or struggled with the loss of a love or a divorce. Additionally, I related to the “good girl” conditioning evident in Graybeal’s behavior—the desire not to make a fuss, not to be too needy, not to be too much work for anyone else. As she writes, “No matter my injury, it was good of me to put other people first.” And it is in her eventual coming to terms with her condition that we witness how self-acceptance leads to creating a life of fulfillment and meaning—something we all aspire to.

But don’t just read Floppy for the story—read it for the writing. Winner of the 2020 Red Hen Nonfiction Award, Graybeal’s book can be funny and poignant, her voice clear and unusual.

She writes: “The disabled and chronically ill have a resilience advantage in that we have always had to develop self-awareness and creativity. When systems are not built for us, creative problem solving becomes necessary for staying alive. No one is going to figure it out for us.”

This creativity shows in her sharp descriptions: “I sunk my head to let the hot water shiver my ears.” And “Anything dropped got dipped in the winter floor sauce of dirty melted snow, salt, and gravel.” And “City soundwaves wafted like a gas leak, and I suffocated in them.”

My favorite chapter, craft-wise, was “Spinning a Tale of Chest Pain.” Here, Graybeal braids facts about the make-up of collagen and genetic mutations with a narrative about spinning wool and chest pain. The stark facts of those mutations lie in juxtaposition to the skepticism of the medical professionals while the explanation of collagen fibers melds nicely with the description of how wool fibers behave, all with the narrator’s distinctive voice, “Would doctors take me seriously if they knew I was a badass married queer spinster? Probably less.”

And this combination of disabled and queer renders Graybeal twice exceptional.

Floppy: Tales of a Genetic Freak of Nature at the End of the World by Alyssa Graybeal
Red Hen Press
$18.95 paperback | Buy Now

Lara Lillibridge (she/they) is the author of The Truth About Unringing Phones, coming in March 2024, with Unsolicited Press; Mama, Mama, Only Mama: An Irreverent Guide for the Newly Single Parent; Girlish: Growing Up in a Lesbian Home; and co-editor of the anthology, Feminine Rising: Voices of Power and Invisibility. Lara is the interviews editor for Hippocampus Magazine and a creative nonfiction editor for HeartWood Literary Magazine. She has an MFA from West Virginia Wesleyan College.