Lia Lee dies at 30; figure in cultural dispute over epilepsy treatment

She could speak only with her eyes.

But Lia Lee’s life bridged worlds and changed American medicine.

Lia, the subject of Anne Fadiman’s 1997 book “The Spirit Catches You and You Fall Down,” died Aug. 31 in Sacramento at the age of 30, after living decades longer than doctors said was possible. The immediate cause was pneumonia, although it was epilepsy and sepsis, a toxic reaction to infection, that had left her in a vegetative state for much of her life.

“Medicine couldn’t have kept her alive. I’m certain love kept her alive — that sounds off the wall, but I mean it in a literal sense,” Fadiman said this week. “It was her family’s continuing love and care for her through all these difficult years.”

Lia, who would become a symbol for incorporating cultural understanding into medical care, was the first American-born daughter of a fiercely loving Hmong family. When she started suffering epileptic seizures, her parents turned to their traditions to help her. Authorities took their daughter away from them for a year for not properly giving her prescriptions which came with dizzyingly complicated instructions. Language and cultural barriers fostered misunderstandings on both sides.

Lia’s family, like so many Hmong, fled Communist Laos after the Vietnam War. The Hmong, an ancient, agrarian tribe who lived high in the Laos mountains, were recruited by the CIA to fight the North Vietnamese. After Saigon fell in 1975, the Hmong were persecuted and many were killed. About 150,000 fled the country.

By 1980 Lia’s family was among the first wave of Hmong refugees to arrive in the United States. After perilous flights and years in sodden Thailand refugee camps, many Hmong settled in California’s Central Valley, new immigrants with little exposure to the modern world who believed deeply in a world of spirits and shamans.

Lia Lee was born July 19, 1982, in Merced. When she was 3 months old, she had her first seizure. American doctors eventually diagnosed epilepsy. Her mother, Foua Yang, and her father, Nao Kao Lee, called it qaug dab peg (pronounced “kow da pay”). To them it was a spiritual illness: They thought their daughter’s soul was wandering and needed to be called back from the farthest reaches of the spirit world.

As chronicled in “The Spirit Catches You and You Fall Down” (the title is a translation of the Hmong name for epilepsy), Lia’s parents thought the medicines were making their daughter worse. Her doctors grew frustrated as the family called in shamans, sacrificed roosters and tied strings around her tiny wrist, but did not always give their exceptionally beautiful and animated daughter her prescriptions. At the age of 3, the sick child was removed from her home by Child Protective Services.

“I can’t imagine the heartbreak that my parents went through,” said Lia’s sister May, who stayed at the foster home to keep her younger sister company. “My parents were always loving. They filled our home with nothing but love. To think of someone taking a child away from such parents.”

Authorities returned Lia after a year of the family’s pleadings. Shortly afterward, she had a grand mal seizure. She lost all higher brain functions and was sent home to die. Her family had cared for her ever since, keeping her at the center of their home and activities.

Fadiman’s book recounting Lia’s story was published at a time when the medical community was doing its own soul-searching about a more holistic approach, such as including the patients or their families in decisions about their health. It became required reading at many medical schools, including Yale University.

Closer to home, Lia’s father was determined that she would make a difference to other families.

“When my father was driving me to college, he told me, ‘You saw what your mother and I went through. When you have patients, I don’t want you to judge them right away,’ ” recalled May Lee, who is now a clinical health educator who sometimes works with noncompliant patients.

Lia’s doctors were long since forgiven and embraced by her family. They were invited to Lia’s traditional three-day Hmong funeral, where her soul was guided home.

“Even though we lost this beloved sister to us, we know she is going to continue to help patients question their doctors and doctors listen to their patients,” said May Lee. “Lia’s story brings people together. She was here to teach us all something.”

Lee is survived by her mother, Foua Yang; brother, Cheng Lee; and sisters Chong Lee, Zoua Lee, May Lee, Yer Lee, True Lee, Mai Lee and Pang Lee.

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