Good books drop us into another world and sometimes that world includes the all-too-familiar reality of serious and chronic illness. This summer, the memoir, “Sick” by Porochista Khakpour got a lot of buzz among critics. Khakpour writes of her long-term struggle with Lyme disease and a traumatic brain injury. Another new book, “Bad Advice” from physician and vaccine researcher Paul Offit, looks at how difficult it can be for the general public to get accurate, reliable health information.
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We set out to build a summer reading list of books that get the patient experience right, so we asked our patients. Here are three picks, including an entertaining and thought-provoking novel; an important work of nonfiction; and a book initially written for 8- to 12-year-olds that broke out to become a mega-best seller and a movie:
Title: Me Before You
Summary: This novel by Jojo Moyes has been called a hilarious and heartbreaking love story. The plot brings together a high-spirited young woman who works at the Buttered Bun tea shop and a man recently paralyzed in a car accident. The book comes highly rated on amazon.com with more than 18,000 reviews, though the controversial ending upset some readers.
Recommended by: Lynne Doebber, who said the story is a cautionary tale. In “Me Before You,” the “parents had money and everything to save their paralyzed son, but he wanted to be independent. They needed to focus more on what he wanted,” Doebber said.
Title: The Spirit Catches You and You Fall Down
Summary: In this nonfiction narrative, author Anne Fadiman explores the challenges that faced a Hmong family whose beloved daughter had epilepsy, an illness they believed afflicted both her body and soul. The family’s conflicts with modern medicine, and even child welfare officials, raised questions about how the healthcare system responds to cultural differences. Published in 1997, it’s been used as a teaching tool in medical schools and won a National Book Critics Circle award.
Recommended by: Kristin Prior, who said “Lia’s parents and her doctors both wanted what was best for Lia, but the lack of understanding between them led them to tragedy.”
Title: Wonder
Summary: This middle grade novel almost needs no introduction. It has sold 5 million copies since its publication in 2012 and was turned into a movie starring Julia Roberts and Owen Wilson. “Wonder,” by R.J. Palacio, follows the middle school journey of Auggie Pullman, who has facial differences due to the rare condition Treacher Collins Syndrome. As with all children, there comes a point when Auggie’s parents can no longer protect him from the uncertainties and cruelties in the larger world. As he starts a new school, Auggie comes out of his shell by taking off the astronaut helmet he wore to hide his face and begins a journey of courage and connection.
Recommended by: Machelle Pecoraro, who liked the way the author dealt with the subject of rare disease. “The parents, the principal, one teacher and the main characters did an amazing job handling difficult moments and everyday life moments,” she said.
“Wonder” also made our list of movies that get the patient experience right. See those recommendations here: When Patients Are Movie Characters
