“‘Sickness’ is what is happening to the patient. Listen to him. Disease is what is happening to science and to populations.”

—Lawrence Weed, MD, 1978

America’s massive health-care system is highly complex, with its own unique language, methods, technologies, and scientific approaches, developed and refined over many generations. Yet, despite its size and complexity, successful health care boils down to a simple formula: A trusting doctor-patient relationship.

Cross-culture and language barriers can test the limits of that relationship, especially in the setting of chronic illness, where communication and trust are vital. Throw in the dynamics of historical mistrust and negative preconceptions, add a human power struggle to retain dignity and hold on to the vestiges of one’s customs, beliefs, and lifestyles after being ripped from your homeland, and there are the central themes of a beautiful and poignant book by Anne Fadiman. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures won the national Book Critics Circle Award and is broadly assigned in medical schools.

Refugees From Vietnam

THE STORY centers on an immigrant child whose family was uprooted by the remnants of war. This is not an uplifting immigrant story of hard work and assimilation; it is a story of cultural clashes and misunderstandings between doctors and people from a foreign land, trying to care for their very sick daughter as they struggled with the American health-care system. The central characters are the Hmong family: Nao Kao, Foura Lee, and their children. The Lees fled to a refugee camp in Thailand and then to America when the camp closed, settling in a Hmong community in California.

The author described what the Lee family expected in America. “It was said in the refugee camps in Thailand that the Hmong in America could not find work, were forbidden to practice their religion, were robbed and beaten by gangs. The women were forced into slavery, forced to have sex with American men and animals.”

American doctors didn’t escape the rumors spreading among the refugees: Doctors remove organs from their patients to eat or sell for food as well as anesthetize patients and put their souls at large, leading to illnesses or death. The Hmong believe the body’s blood supply is finite and not replaceable. Many Hmong also may believe that American doctors causally drain blood from people. In turn, readers will receive an eloquent dose of prejudice from some America doctors, who may consider the Hmong ignorant peasants who believed in the spiritual power of animal sacrifices. The book is filled with human struggle, much of which is to be admired, but readers will find no clearly drawn heroes or villains amid the suffering.

Tragedy Strikes

SHORTLY AFTER the Lees arrived in California, their daughter Lia was born in the Merced Community Medical Center in California’s Central Valley. At age 3 months, Lia had an epileptic seizure, 1 of more than 20 seizures over the next few months. They were grand mal episodes, which often ended in the emergency room. The treatment of Lia’s seizure disorder by her parents and health-care providers is the central narrative in the book.

One of the many strengths of this book is how Ms. Fadiman skillfully draws the usually dry ethnographic exposition in ways that bring the people and culture to life. Equally well done is the presentation of historical facts about the Hmong, which are needed to fully understand the Lees mega culture shock in the United States. However, the spiritual beliefs they brought from Laos can be frustrating to read by many science-based people of the 21st century.

For instance, when Lia was 3 months old, her older sister, Yer, slammed the front door with such power that Lia’s eyes rolled back in her head, her arms lifted over her head, and she passed out. Lia’s parents concluded that the violent noise of the door caused Lia’s soul to fly away. As traditional Hmong, who had retained their animistic beliefs, Lia’s parents recognized the symptoms, quag dab peg, the Hmong term for epilepsy, which, like many illnesses of spiritual origin, is believed to be caused when the spirit leaves the body.

Long Struggle Begins

LIA’S SEIZURES continued, and she was finally given antiseizure medication. However, not wanting to interfere with the quag dab peg, the Lees often held back her medication. By the time Lia was 4 years old, the seizures had worsened, with more than 100 outpatient visits and dozens of hospital stays.

“The interaction between Lia’s doctors and the Lees is an up-and-down battle of misunderstanding and reconciliation, much of which is instructive to any physician reading the book.”

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During one of her many procedures, an infection set in, and she went into septic shock. Her organs began to fail and by the time she was stabilized, she had suffered brain damage, losing her higher brain function. Remarkably, she did not die; she could breathe but could not speak, only able to make whimpering sounds.

The interaction between Lia’s doctors and the Lees is an up-and-down battle of misunderstanding and reconciliation, much of which is instructive to any physician reading the book. Lia never weighed more than 47 pounds, and for 26 years, her parents bathed her, fed her, and loved her. The author, in her own way, strives to have the reader celebrate the Hmong’s spiritual rituals, such as the shaman’s numerous visits to the Lee home. However, some readers may find much of the rituals cruel and senseless. Lia remained in a persistent vegetative state for 26 of the 30 years she was alive.

This book is highly recommended for readers of The ASCO Post. ■