The death of Lia Lee, the protagonist of Anne Fadiman’s extraordinary book, which helped changed medical practices.

Margalit Fox has a touching and fascinating obituary today of Lia Lee, the little Hmong girl who was at the center of Anne Fadiman’s book, “The Spirit Catches You and You Fall Down.” The book details what turned out to be an unbridgeable gap between Western doctors and traditional Hmong practices.

Lia Lee in 1988. Photo by Anne Fadiman

“That cultural divide — despite the best intentions of both sides, Ms. Fadiman wrote — may have brought about Lia’s condition, a consequence of a catastrophic seizure when she was 4.

Over the years, whenever Ms. Fadiman lectured about the book, readers would press a single question on her before any other: “Is Lia still alive?”

Lia Lee died in Sacramento on Aug. 31. (Her death was not widely reported outside California.) The immediate cause was pneumonia, Ms. Fadiman said. But Lia’s underlying medical issues were more complex still, for she had lived the last 26 of her 30 years in a persistent vegetative state. Today, most people in that condition die within three to five years.

Acclaimed by reviewers, “The Spirit Catches You and You Fall Down” won a National Book Critics Circle Award. It has sold almost 900,000 copies, according to its publisher, Farrar, Straus & Giroux, and remains widely assigned in medical schools and in university classes in social work, anthropology, journalism and other fields.

As a result, Lia’s story, as few other narratives have done, has had a significant effect on the ways in which American medicine is practiced across cultures, and on the training of doctors.

“A lot of people in medicine were talking about that book for a very long time after it was published,” Sherwin B. Nuland, the physician and National Book Award-winning author, said on Wednesday. He added:

“There’s a big difference between what we call ‘disease’ and what we call ‘illness.’ A disease is a pathological entity; an illness is the effect of the disease on the patient’s entire way of life. And suddenly you read a book like this and you say to yourself, ‘Oh, my God; what have I been doing?’ ”

What Fox also points out in the obit is the extraordinary level of personal care and devotion that Lee’s family maintained for 26 years that Lee lived in a persistence vegetative state — something alien to most modern Americans.  And probably the reason she survived beyond the 3 or 4 years that most children in her condition live. Was it an example of futile devotion or enriched humanity?

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