The Spirit Catches You and You Fall Down tells the story of Lia Lee, a Hmong child with epilepsy, whose tragic demise reveals the dangers of a lack of cross-cultural communication in the medical profession.
When Lia was around three months old, her older sister Yer slammed a door and Lia had her first seizure. Her parents, Foua and Nao Kao, believed that the noise of the door had caused her soul to flee. They diagnosed her illness as qaug dab peg, "the spirit catches you and you fall down." While they were concerned for Lia's safety, they also believed her seizures made her special, as many epileptics were chosen to be ‘tvix neebs’, or ‘shamans’. They brought her for treatment to the Merced Community Medical Center (MCMC), but they also utilized traditional healing methods and engaged a tvix neeb to call back her soul. The family believed in "a little medicine and a little neeb," but worried that too much medicine could limit the effectiveness of the spiritual healing.
Lia's rationalist doctors, on the other hand, treated Lia's epilepsy purely as a neurological disorder. Her primary physicians, Neil Ernst and Peggy Philp, tried to provide the highest standard of medical care possible. However, the problem was not even correctly diagnosed until a few months after Lia's first visit, due to a lack of interpreters. Lia's medical regimen was complicated and her parents were either unable to follow the doctors' instructions, unwilling to do so, or both. They were unhappy with the side effects of the medication and may not have understood the connection between a seizure and its effect on the brain, nor the necessity of giving anticonvulsants.
The Lees' noncompliance had devastating effects. Lia suffered more and more severe seizures and began to show signs of mental retardation. Concerned for Lia's safety, Neil notified Child Protective Services (CPS) and had the child placed into foster care. While her foster parents were kind, the separation was traumatic for both Lia and her parents.
Lia's social worker, Jeanine Hilt, taught Foua how to administer Lia's medication so that the family could be reunited. Four months after returning home, however, Lia went into status epilepticus and had to stay at the hospital for fourteen nights. Two months later, she had another grand mal seizure, which would not stop. It turned out she had septic shock, a condition that left her brain-dead.
Lia's doctors assumed she would die and allowed the family to take her home. She did not die, however, for another twenty-six years. Her family continued to love and care for her, and each year a tvix neeb held a ceremony to ease her suffering.
Interspersed in Lia's story are chapters on the history and culture of the Hmong, which help to explain the Lees' point of view. The ethnic group originated in China, where they fought the Chinese to maintain their culture. Rather than assimilate, many migrated to the highlands of Vietnam, Laos, and Thailand. During the Vietnam War, the CIA recruited the Hmong in Laos to fight against communist forces. When the US withdrew its support, around 150,000 Hmong (including the Lees) were forced to leave their homes to escape persecution. The majority eventually relocated to the United States, where they endured slander, violence, and high rates of unemployment. Many of their American neighbors, unaware of their involvement in the war, resented their high reliance on welfare. The Hmong, on the other hand, felt that they deserved this help due to the sacrifices they had made for the U.S.
The Hmong's tenacity and unwillingness to surrender helped them to survive for thousands of years. However, it also made them wary of submitting to doctors' orders. A compounding factor in Hmong noncompliance was their taboo against many western medical procedures. For instance, they believed that the body has only a finite amount of blood and that frequently taking one's blood can be harmful or fatal. They thought surgery might lead to disfigurement not only in this lifetime but also in subsequent ones, and that autopsies could prevent souls from being reborn. For this reason and others, western doctors frequently struggled with their Hmong patients.
Fadiman suggests that acknowledging other belief systems could go a long way in improving the outcomes of patients from different cultures. She cites examples of successful cross-cultural programs, such as one in which shamans are encouraged to work alongside western health care providers. Her work has had a lot of influence, as it is frequently read in medical training programs and "cultural competence" is now recognized as an important trait.