When author Anne Fadiman first visited Merced in the late 1980s, she says more than 10,000 Hmong refugees and their children were living there. At that time, about one out of every six people living in Merced was Hmong, she says.
The hospitals were overwhelmed by the new refugee population, she recalls. Medical interpretation was not legally mandated at that time, and Merced Community Medical Center had just one Hmong interpreter. It often fell to the hospital janitor, or a family’s young child, to translate sensitive medical information to a patient.
Fadiman’s 1997 book, ‘The Spirit Catches You and You Fall Down,’ chronicles the medical and cultural conflicts that arose between one Hmong family and their daughter’s pediatricians. Reporter Rebecca Plevin interviewed Fadiman as part of ‘Homegrown,’ Valley Public Radio’s new program focusing on books about the Central Valley. Below are excerpts from the interview.
What stood out to you about Lia Lee’s story?
“Her family had been so well intentioned, and her doctors had been so well intentioned. It was clear right at the start that this was not a story with villains. Lia was a little girl with a seizure disorder and her doctors had been excellent doctors, a pair of married pediatricians who would have been my kids’ pediatricians later on when I had kids if I’d lived in Merced. Just wonderful people, but who didn’t have the cultural understanding that might have enabled them to get through to Lia’s parents, who were analogously exceptional parents - smart, devoted, just wonderful parents - but who failed to give Lia her seizure medications as prescribed, for a variety of reasons.
“So it was a story with tragedy and drama, in which the villain was cultural misunderstanding, rather than obtuseness or laziness or cruelty or any other lack of virtue on the part of any character.”
Are you surprised that this book has resonated so far beyond the Central Valley?
“Yes, I have never ceased being surprised. I spent almost nine years writing this book, and there were times during that period where I really thought I was a lunatic. Who was going to want to read a book about an epileptic Hmong toddler? But I think the book has ended up resonating because people are interested in cross-cultural issues, they’re interested in medical issues, and I also think that Lia’s family and her doctors are compelling people.
“I think that the sense the book gave of being inside this family, that originally seemed strange - readers might originally say, ‘Oh gosh, the Hmong , where are they from, do they sacrifice animals, and do they really do this and do they really do that?’ And they really did do all of those things, and yet they weren’t strange at all. I really think that maybe it was the making the strange familiar that made the book resonate. I think people cared about Lia because she was someone worth caring about.”
When did you last see the Lia and the Lee family?
“A little less than a year ago, Lia finally died at the age of 30. She’d been in a vegetative state since the age of 4 and I’d just like to point out how extraordinary it is that her family was able to keep her alive, at home, never institutionalizing her, for that long. It’s truly a medical miracle that I think can only be explained by her family’s love. Nothing else could possibly have kept her alive for that long. But she finally did die of pneumonia at the end of last August.”
What role did Lia play in her family?
“I can never explain the role that Lia served in that family. She spent 26 years in a vegetative state, she was so hard to take care of, but she was so loved, she was a kind of gravitational center around which the family orbited. I’m not sure the family will ever recover from her death, and it’s impossible to explain, unless you’ve been in that living room, with the family, when she was alive, and seen the love radiating from everyone in her direction.”