Hi, I am Phillip Periman from Amarillo, one of the discussants for the High Plains Radio Readers’ Book Club. One of the three books we are reading this Spring is “The Spirit Catches You and You Fall Down” written by Anne Fadiman and published in 1997. This non-fiction book is about a Hmong refugee family, the Lees and their daughter Lia stricken with epilepsy, and the major family trauma and loss they suffer because of cross cultural differences with the American medical system.
The Lees were among the 150,000 refugee Hmong, who having fought for the United States had to flee in 1975 when Laos fell to the North Vietnamese. In 1980 they reached Merced, California where there was a Hmong enclave. During those five years they endured a twenty-six day march into Thailand; three of their children died. In Laos they farmed. In California they had no work. English was not spoken. Their daughter Lia born in 1982 was their first child born in the United States and the first born in a hospital. At age 3 months Lia, had a seizure. The family took her to the local hospital where she was eventually diagnosed with a major seizure disorder and given modern medical care. However, because of the language and cultural barriers, the family did not understand what had happened to their daughter nor what the doctors wished them to do. They could not read the label on her prescriptions. Often they cut the dose or did not give the medicine fearing it would harm Lia.
The saga of seizures followed by encounters with the western medical system and retreat to their home and reliance on their culture’s medicine men resulted in great frustration on both sides.
“My parents weren’t able to convey exactly that she was having seizures,” Lia’s sister Mai reported.
Lia’s pediatrician told Fadiman,
“I felt that I was trying to penetrate a very dense wall — a cultural wall — and didn’t have the tools to do it,”
When not quite 3, the doctors had Lia legally removed from the family; she spent a year in foster care. This was a great trauma for Lia and caused much bitterness in her family toward the doctors. After returning to her family, at age 4 Lia suffered a grand mal seizure lasting more than two hours before medications stopped it. However, an infection set in; she went into septic shock and experienced organ failure. During this episode, Lia lost higher brain function; the medical doctors assumed she would die. But she didn’t. She would live for 26 years in a vegetative state tenderly cared for by her family. She continued to breath, to make a whimper, but not to speak. She could feel pain. But she had no voluntary movement. It could not be ascertained if she could hear or see.
There were no more seizures probably secondary to cerebral cortex damage. By age 41/2 Lia had made more than 100 outpatient visits to doctors and had had 17 hospital admissions. Like most children with severe brain damage Lia grew very little. By age 30, she was 4’7” and weighted only 47 lbs. Every day her parents bathed and fed her, flexed her limbs, caressed and tenderly spoke to her. They also had a Hmong shaman treat her to ease her suffering.
Many medical practitioners find much to learn from this book including the problems of cross-cultural encounters and the difference between disease and illness. Confusion as to the intent and benefit of western medicine occurs today even in the high plains. Over 40 different languages are spoken in the Amarillo schools. Patients from Burma, Iran, Laos, and Mexico are seen in medical clinics and our hospitals. In the following talks on this book, I will explore the origin of the Hmongs and their cultural and medical ideas as well as the struggles Fadiman had writing this compelling book.
Thank you for listening. This is Phillip Periman in Amarillo, Texas.