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July 06, 2007

Review: The Spirit Catches You and You Fall Down

The Spirit Catches You and You Fall Down. No, this book isn't about Charismatics losing their faith, but rather about a Hmong family in California navigating the medical system while caring for their little girl with epilepsy. Read the full (long) review below the fold.


Fadiman, A. (1998). The Spirit Catches You and You Fall Down : A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus and Giroux, pp. 352.


Introduction

Anne Fadiman tells the story of little Lia Lee, a Hmong-American child with epilepsy, and weaves together the woof of parental love and biomedical treatment with the warp of Hmong and American cultures. The Spirit Catches You and You Fall Down : A Hmong Child, Her American Doctors, and the Collision of Two Cultures brings into focus how extensively cross-cultural transitions impact both the approaching and approached peoples.

Anne Fadiman is currently the Francis Writer in Residence, the endowed chair in nonfiction writing at Yale University, and has an extensive background in writing, teaching, and editing. Fadiman spent eight years researching and writing this book, including becoming close to Lia Lee’s family as well as the doctors and other social agency workers who were involved in this story. Her sympathy for the Hmong people and culture, as well as respect for the western medicine, provide a non-neutral point of view that is positive towards all involved. In an interview in 2001, Fadiman explains what drew her so deeply into this book, "Yes, it is about an epileptic Hmong toddler, but it is also about many other things. . . I started pulling on a slender thread, the thread that was Lia Lee, the small sick child . . . I pulled on the thread and the thread became a string and the string became a rope, and then I tugged really hard on the rope and I discovered that it was attached to the entire universe."


The Spirit Catches You

Lia Lee was born in 1982 in Merced County, California, the fourteenth child of Hmong immigrants Foua and Nao Kao, but the first to be born in the U.S. Though male children are traditionally favored among the Hmong, Lia was adored and the clear favorite of her parents. She had first seizure when she was just three months old. Her parents believed it was because her soul had been frightened, left her body and became lost after her sister slammed a door. Her seizure was what Hmong call qaug dab peg or "the spirit catches you and you fall down” (p. 20).

The spirit catches you. . . It could be said that Lia’s family was caught by surprise by both Lia’s illness and their convoluted journey through the U.S. medical system. For most ailments, Hmong immigrants typically favor seeing a txiv neeb, a Hmong healer. However, Lia's parents brought her to the Merced County Medical Center (MCMC) when she had serious seizures. It wasn’t until their third trip into the emergency room when Lia was 8 months old that an epileptic seizure was observed by a physician. It was at this hospital that Foua and Nao Kao and Neil Ernst and Peggy Philp, a husband-wife pediatric team, began their relationship--all desiring a healthy little girl and each facing challenges of understanding one another and making the best care decisions for the same little girl.

Fadiman alternates chapters about Lia with chapters on the history and culture of the Hmong people. Interwoven in Lia’s story is the story of her people. The parallel can be drawn that the spirit catches the Hmong people with wars and threats of assimilation, and in response the Hmong eschew resistance and migrate. Most of Merced’s Hmong population came to the U.S. from Laos after the Vietnam War. While the author has done extensive research, still she is criticized by some who disagree with her portrayal of Hmong history. Mai Na M. Lee, a Hmong American, reviewed this book and confronts Fadiman for stereotyping Hmong people, albeit positively. Still, the book gives good context for the historical setting of the Hmong migration to the U.S. as well as portraying details illustrating both the breadth and depth of Hmong culture


And You Fall Down

And you fall down. . . Cultures, parents, doctors—-they all fall down, with the child bearing the brunt of their shortcomings. Cross-cultural tensions are inevitable when medical care is needed and doctors and patient are from differing cultures. This is starkly illustrated by Lia’s five year ordeal to treat her seizures medically by the MCMC staff and traditionally by her family. Lia’s treating physicians ordered courses of medications, over 20 combinations over a five year period. Lia’s parents, knowing no English and not literate with either words or numbers, would sign consent to medical instructions without understanding. When medications prescribed for Lia had negative side effects or when Lia was not showing any ongoing signs of seizures, her parents would blame the medications and not administer them. At times, this led to further seizures, visits to MCMC, and further hospital procedures (like drawing blood) which were upsetting to Foua and Nao Kao.

A better approach, thought Lia’s parents, was "a little medicine and a little txib" (p. 110.) While medical care at MCMC was provided at no charge, Lia’s family spent large sums on buying amulets, having a tvix neeb perform ceremonies, and sacrificing chickens, pigs, and even a cow. Foua would grow herbs and make special concoctions both for feeding to Lia as well as bathing her. The author was privileged to be present when the family sacrificed a pig in their living room in order to seek her wandering soul and bring it back to Lia.

From the doctors’ perspective Neil Ernst said, "I felt it was important for these Hmongs to understand that there were certain elements of medicine that we understood better than they did and that there were certain rules they had to follow with their kids' lives” (p. 59.) This clash—-primarily over lack of compliance in regard to Lia’s prescribed medications-—led to Lia being put into the foster care system for more than six months. She was returned when her parents demonstrated ability to comply with the medication regimen, which had been greatly simplified during the time she was in foster care.

Regardless of the best intentions of the medical doctors and the conscientious care of her parents, at five years old Lia Lee had an epileptic seizure so profound that even heroic measures had little effect. This was combined with an infection and septic shock, which brought Lia to the brink of death. Her parents had the support of Neil Ernst to take her off of life support and bring her home-—to die, thought the doctors; to care for, thought her parents. Against all odds, Lia survived, though in a persistent vegetative state. Her mother has cared for her since then as she would an infant, bathing her, spoon feeding her, even wearing her in a traditional Hmong baby carrier. As reported by Newsweek in 2005, Lia is still alive and being cared for by her mother.


Reflections

I have been the mother misunderstood by the medical establishment, struggling to communicate, and lacking the basic cultural assumptions that doctors and nurses expect me to have. When we lived in Ukraine my seven year old son became sick with pneumonia. While I was adept at navigating through my routine daily tasks, both culturally and linguistically, I found myself at a loss when it came to emergency medical care. My son was hospitalized in a children’s hospital in Ukraine—a hospital that did not have lights or toilet seats for the bathroom. The nurse yelled at me for not bringing toilet paper or slippers for my son. We were lined up with other mothers and children in a hall, and ushered through various breathing therapies, none of which were explained, many of which seemed to be based more on superstition than medical science. And while I knew the doctors were well-trained and showed compassion to my son and I, the nurses treated us with disdain. I struggled to understand the brisk Russian laced with medical terms, and when I asked for a phrase to be repeated, it was said just as fast, only louder. After twenty-four hours, I had recourse to a private, western-style hospital with English speaking staff. Lia’s mother and many other immigrants to the U.S. do not have that advantage.


Conclusion

The Spirit Catches You and You Fall Down was both thought-provoking and emotionally rewarding. It is recommend for those who enjoy a well-told story, as well as those working in public health fields, interested in cross-cultural transitions, or who have special interest in the Hmong people.

Anne Fadiman discussed Lia Lee with medical anthropologist Arthur Kleinman. His observations brings out the crucial point (p. 260), "You need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can’t see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else’s culture?"

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