I’ve got a fantasy-themed post up today, answering questions from ESPN.com’s fantasy editors about divisive players for fantasy owners in 2013.
I hadn’t heard of Anne Fadiman’s The Spirit Catches You and You Fall Down until I encountered a reference to it in Alison Hoover Bartlett’s The Man Who Loved Books Too Much, in which she mentions it as one of her four favorite narrative non-fiction titles. I wasn’t sure how compelling the story of a Hmong girl with severe epilepsy who got caught in the cultural divide between her family and the American doctors who treated her would be as a 300-page novel, but Spirit is so thoroughly researched and so perfectly balanced that it turned out to be as engrossing as any non-fiction book I have ever read.
Lia Lee is the Hmong girl at the center of the book, born with a terrible case of epilepsy that caused massive grand mal seizures, one of which led to irreversible brain damage when she was four that left her in a vegetative state for the remainder of her life. (She died in September of 2012, shortly after the book was reissued for its 15th anniversary.) The conflict at the heart of the book swirls around Lia in the time between her birth and that neurological catastrophe; in those four-odd years, the doctors tried an increasingly aggressive course of treatment that Lia’s parents didn’t fully understand and with which they didn’t entirely comply, while also pursuing traditional Hmong treatments (what many of us would consider “woo”) along with or sometimes in place of what the doctors prescribed. This clash of cultures, exacerbated by a then-unbridgeable language gap and socioeconomic factors, led one doctor to accuse Lia’s parents of child abuse for their passive refusal to administer the prescribed medications, after which she was taken from them and placed in foster care for about a year. Not long after she was returned to the custody of her parents – with full support from the foster family that took her in – she suffered the massive seizure that effectively ended her life, although she remained in that vegetative state for fifteen years beyond it.
The phrase in the book’s title is the translation of the three-word Hmong phrase that refers to the disease we know as epilepsy, as the Hmong don’t have an exact word for it. In Hmong culture, many diseases and disorders we know to have clear physical causes are treated as ailments of the soul; Lia’s parents believed that the seizures were the result of one of her sisters slamming a door, which scared Lia’s soul out of her body, after which they had to try to coax it back in using methods like animal sacrifice. Fadiman’s greatest trick in this book is providing total balance between the two sides of the debate – it would be far too easy to paint the Lees, and the Hmong in general, as animist twits believing in superstitious nonsense that modern science should have killed off a few centuries ago. Fadiman never questions the scientific reality of epilepsy, but gives credence to the Lees’ beliefs as they affected their own perspective on Lia’s illness, treatment, and the final catastrophe, while also extrapolating from that to discuss the Hmong experience with the United States in general, from their time in the CIA’s secret army in Laos to their resettlement here starting in the late 1970s. The only real villain here is our government, which was happy to sacrifice thousands of Hmong men but did little to take care of this oppressed minority after the communist Pathet Lao overthrow the country’s monarchy and began a genocidal campaign that wiped out up to a quarter of the country’s Hmong population. (Laos remains one of the world’s only communist states, and, not coincidentally, is also extremely poor.) These detours into the history of the Hmong and their experience as immigrants to the U.S. add some needed context to the story; the Hmong left behind not just their homeland but their entire way of life, which revolved around self-sufficience through agriculture and the broad support networks of extended families (called “clans”), and then were resettled into unfriendly environments ranging from Minneapolis to Merced, California, where Lia’s parents lived. Fadiman touches briefly on a deep sense of betrayal among the older generation of Hmong, who felt that they were promised things by the U.S. for their aid during the war(s) against the communists and received very little of what was pledged.
Fadiman began writing the book as a magazine article that was never published, starting her research in the late 1980s almost a decade before the book’s initial release in 1997. In addition to reviewing 400,000 pages of medical records, she went back and spoke to as many of the principals involved in Lia’s care as she could, including the main doctors who treated her, the social worker who was most heavily involved with the Lees, and the Lees themselves, becoming so involved that Lia’s mother, Foua, began to refer to Fadiman as one of her “daughters.” (Including Lia, Foua had nine surviving biological children, most of whom went on to attend college in the United States and to find jobs and incomes that evaded their parents’ generation after the migration.) The book came out at a time when the idea of holistic medicine was still viewed as a concept from the fringes, never taught in schools and barely practiced in hospitals (according to Fadiman’s accounts). Since then, it has become more popular in academia and in practice, with The Spirit Catches You and You Fall Down a part of the process of teaching doctors to view the patient as a whole rather than strictly the disease or disorder. Yet I think the book’s core lesson goes beyond medicine; while many of you will read the book as I did, with an inherent bias towards the doctors who employed sound science while banging their heads against the wall of parents who refused to follow the regiment of pills that might have saved their daughter’s brain, Fadiman does a tremendous job of showing us how and why the Lees distrusted and feared American doctors and Western medicine, a gap that the doctors should, in hindsight, have worked harder to close.
Fadiman writes at an extremely high level, never talking down to the reader and avoiding inserting herself too much into the story. I did notice a few odd word choices – referring to one person as having an “exiguous crewcut,” or the frequent use of “hegira” to describe the Hmong’s exodus from Laos, an accurate word that I’d never seen before – but otherwise the book was extremely readable and moved as quickly as any novel, especially in the intense, often heartbreaking depictions of Lia’s neurological crises. Even when you know the eventual outcome is tragic, Fadiman manages to infuse the situations with tension through precision, painful passages of details that put me in the room with Lia, her doctors, and her bewildered parents. In some ways, it’s a terrible story, but one that needed a wide telling like this to help us all expand our cross-cultural understanding.