Anne Fadiman never spoke to Lia Lee, nor was it possible for the little girl to speak to her. By the time Fadiman - who wrote the book chosen by UC Davis for its first Campus Community Book Project - met the young Hmong-American, Lia was profoundly disabled by a seizure disorder.
Yet spending time with Lia and her immigrant family, the subjects of The Spirit Catches You and You Fall Down, greatly affected Fadiman's life, the author told an audience at the Mondavi Center Monday.
During the late 1980s and early 1990s, Fadiman and her Hmong interpreter, May Ying Xiong Ly, spent many an evening sitting on the floor of the Lees' Merced apartment talking to the family about Lia's needs. Their explanation of her condition became the title of Fadiman's book.
"Lia mainly taught me because she was so beloved by her family," Fadiman said. "I learned to love her myself - she became a complete person to me."
Fadiman was joined onstage during a finale event for the book project by Ly, Lia's sister, Mai Lee; and Lia's former doctors.
Knowing Lia and her family's struggles had a tremendous impact on them, too. As a panel they discussed the changes in family life, medical practice and cultural awareness that have occurred in their lives, thanks to Lia.
"What an extraordinary journey we've all been on," said Dr. Neil Ernst, who with his wife, Dr. Peggy Philp, was one of Lia's physicians at the Merced Community Medical Center.
Ernst, who with Philp now practices in Oregon, said he once referred to Lia as "dead" after she suffered the seizure that left her in a vegetative state. He doesn't do that anymore.
"The Lees taught me about life and death," Ernst said.
Mai Lee, now a student at UC Davis, recalled that it was difficult to be a teen-ager in her bi-cultural home. "I've never had the respect for my parents until the book was published," she said, breaking into tears. "I saw what my parents went through."
And Ly, who now heads the Hmong Women's Heritage Association in Sacramento, described how becoming Fadiman's interpreter enabled the "assimilated" college student to learn more about the history of her ethnic community.
As Fadiman asked Ly questions, "all those puzzles in my head about my own culture … sort of came together," Ly said.
The panelists agreed that toughest part of Lia's story and The Spirit Catches You comes when the little girl is placed in a foster home temporarily because her doctors learned that Lia's parents weren't giving her her anti-seizure medicine.
"This is the hard one; this is the tooth ache; this is not fun," Ernst said. He said he's not sure he had another choice, however.
"I agree that what (the county) did was a good thing, if the seizures would have been controlled," Mai Lee said. "But since the outcome was different, I fall in between."
Over the years, she and her husband and the medical profession have generally increased their "cultural competency," Philp said. But much more still needs to be done. In one of her last cases at the Merced hospital, now owned by a private corporation, a Mien-speaking patient was denied an interpreter.
"I felt like we were spiraling back to where we had begun," Philp said.
Since September, UC Davis faculty and staff members and students have met for group discussions on The Spirit Catches You. A number of faculty members also incorporated the book's themes into their courses.
The community book program was widely successful, said its organizer, Karen Roth.
"I've been stopped on the sidewalks downtown and in by own neighborhood by people who wanted to talk about the book and the poignant dialogues it raises," she said.
Roth said Provost and Executive Vice Chancellor Virginia Hinshaw has already given the go-ahead for another book project next year. Roth is now soliciting suggestions for that book.