Editor’s note: We are sad to report Cai died on January 2, 2023. We highly recommend reading her Medium feed, which details her thoughts around dying.
I met writer Cai Emmons over Twitter, via a mutual friend. She was diagnosed with ALS, a disease that attacks the nervous system and weakens muscle function, in February of 2021. Emmons’ eight books include novels, a book of short stories, and a craft book. Her two most recent novels, Livid and Unleashed, were both released in September 2022 by Red Hen Press and Dutton, respectively. You can read more about her and her work at her Medium account.
[Ed. note: For this listing, Emmons recommended books by authors who self-identified as either chronically disabled or chronically ill. Some chronic illnesses lead to chronic disabilities.]
The Diving Bell and The Butterfly by Jean-Dominique Bauby.
Jean-Dominique Bauby had a stroke that led to a coma. “He emerged with a rare condition called ‘locked-in syndrome,’ in which a patient is completely paralyzed, but for some eye movement, yet consciousness remains intact,” Emmons says. Bauby’s memoir, written by blinking his left eye, narrates his experience in the hospital. “What makes this account so vivid is not only Bauby’s keen observations of the other patients and the hospital staff, and the visits and calls from his family and friends, but the way his world is enlarged by his imaginative ability to travel to places he has visited, remember various encounters, conjure favorite foods, etc.
The way he writes the memoir – with the aid of a person reciting letters and him blinking his eye when they say the right one – is nearly unfathomable in its difficulty and a testament to his strong life force and will to live, despite vastly reduced circumstances…My own body is moving toward paralysis, and I am constantly asking myself if I would want to keep living in such a state, so this memoir speaks to me loudly,” says Emmons.
Smile by Sarah Ruhl.
“Playwright Sarah Ruhl survived a high-risk pregnancy to discover that the left side of her face was completely paralyzed due to Bell’s palsy,” says Emmons. Many patients do recover fully, but Ruhl’s condition didn’t improve.
“Facial expressions are such an important aspect of communication with others that this loss was deeply disconcerting for Ruhl, as well as humbling. We follow her rocky path to the final acceptance of her flawed and beautiful face. The embrace of imperfection that Ruhl arrives at is a theme echoed in much of the work of disabled writers I’ve read. (I have seen this in my own work).”
Wolf Hall by Hilary Mantel.
“This masterful historical novel is riveting for the way it creates a multi-faceted and sympathetic portrait of Thomas Cromwell, the right-hand man to Cardinal Woolsey during the reign of Henry VIII. Mantel manages to maintain our sympathies with Cromwell, even when he is doing things we might not approve of,” says Emmons. She praises Mantel’s deep research and her use of period language and notes that Mantel suffered from severe pain brought on by endometriosis.
Emmons says, “Her agent said of [Mantel] at her death, ‘She saw and felt things us ordinary mortals missed.’ It seems possible that some of [her] sensitivity originates with a woman who has been watching events from the sidelines and taking notes for most of her life.”
1984 by George Orwell.
Orwell’s dystopian classic depicts a “gloomy outlook,” Emmons says, “that may have been exacerbated by the ailing state of his own body. He had been sickly all his life, but in 1938, he was diagnosed with tuberculosis. Going to a sanitarium improved his health, but eight years later, things took a drastic downturn when he moved to Scotland on the heels of his wife’s death to work on 1984. He was feverish, had night sweats, and underwent something called ‘collapse therapy’ that was designed to close the cavities formed from TB. This therapy, according to Orwell, maybe have influenced the way Winston’s torture in [1984’s] Ministry of Love was described. He confided in friends that 1984 wouldn’t have been so bleak if he had not been so ill when writing it.
“I think [Orwell’s condition] reveals the inextricable connection between mind and body,” says Emmons. “When I wrote Unleashed in 2020, I felt it was my body chronicling my path to disease – metaphorically. It was speaking about things my mind was, as yet, unaware of…I now believe that all writing, in some way, emerges from the body’s consciousness. 1984 seems like a prime example of that.”
Beauty is a Verb: The New Poetry of Disability edited by Sheila Black, Jennifer Bartlett, and Michael Northen.
“I love this book for the fact that it combines poetry by writers with many different kinds of disabilities, along with essays that document historical trends in approaches to disability,” Emmons says.
“Some of the poets place their disability front and center in their poems, others do not, but almost all of the work is body-centered. We see how these poets have a keen perspective on a world that is not made with them in mind.”
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