Lia, who suffered from severe epilepsy, was constantly jostled by two conflicting forces. Her parents, deeply superstitious and adhering to Hmong traditional beliefs, believed that the hospital’s invasive procedures and medications were harming their daughter’s soul.
Lia’s epilepsy, called qaug dab peg in Hmong, is literally translated as “the spirit catches you and you fall down.” Her parents believed that as an infant, Lia’s soul had become lost once an evil spirit frightened it from her body and that her soullessness resulted in her symptoms. On the other hand, Lia’s doctors believed that her parents’ noncompliance with modern medical treatments and blind belief in outdated spiritual practices were putting Lia’s health increasingly in jeopardy.
Although both her parents and doctors want desperately for Lia to get better, their clashing beliefs and Lia’s subsequent deterioration highlight the dangers in not taking the time to fully understand the opposite perspective. The Lees, who had originally consulted shamans to perform animal sacrifices in the hopes of healing their daughter, were considered “noncompliant” even though they couldn’t understand English, and the hospital couldn’t provide translators to help them consent to procedures.
Family is, moreover, an integral part of Hmong culture, and to Lia’s parents it seemed as if the doctors were trying to take custody of a member of their family when Lia was hospitalized.
Fadiman describes in sharp details the side effects of Lia’s medications but does so with the emotional distance of someone who has become numb to the cyclic process of treatment without healing, reflecting the family’s helplessness and anger.
The bigger issue, Fadiman points out, is simply the fact that not many people are familiar with Hmong culture in the first place. Chapters on the history of the Hmong as they fled Laos and settled in the United States are scattered throughout the book, detailing the violence that they frequently dealt with from inconsiderate Americans. Many people viewed the Hmong as simplistic, dirty and uncultured. Before reading this book, I hadn’t even heard of the Hmong before.
When reading this novel I found myself frequently questioning which side to support. Fadiman alternately paints both Lia’s parents and her doctors in a sympathetic light, as readers come to understand each party’s motivations despite each side’s not being able to understand the other. I thought this ability to evoke an emotional struggle in the reader, to truly feel the Lees’ indignation and confusion and the doctors’ frustration, is one of the book’s greatest strengths.
But Lia Lee’s story is ultimately one of tragedy and love. After she suffered a seizure that left her in a vegetative state, her family took care of her for almost the entire 30 years of her life with an uncommon devotion. The last lines of the novel, as Lia’s parents try to call her soul back one final time, are fitting. “Come home through this door / Come home to your family / Come home / Come home / Come home...”
In the afterword to the newest edition, Fadiman reveals the arduous research process she went through in writing this book. She spent years absorbing all the available literature and texts on the Hmong, tortured over the fact that her work would not be good enough and couldn’t possibly right all the wrongs that the American people had done to them.
Writing The Spirit Catches You And You Fall Down was truly a labor of love for her. In fact she refuses to update her book with information from newly published textbooks on Hmong culture and history because she feels it would be an insult to the years she spent alongside the Lees, to the story she had promised to tell.
To consolidate the lesson she had gleaned from Lia’s story into one emphatic phrase, Fadiman arrives at the revelation that “empathy is so hard – harder than anger, harder than pity.” There is still much work to be done regarding fostering an attitude of “cultural humility,” as she calls it, among medical professionals, but Lia’s legacy has been remarkable.
In recent years, The Spirit Catches You And You Fall Down has become required reading at some medical schools. The medical community has begun to recognize the importance of tolerating other cultures and beliefs and not just considering, but prioritizing, them when treating patients.
Fadiman ends her journey with the Lees on an uplifting note, as she realizes that empathy is the common language that can unite doctor and patient, and by extension, any two groups of people who are otherwise separated by communication barriers.
