Lia Lee is not like the other children in this lively household. She doesn't laugh or cry. She doesn't join in games with her young cousins, nieces and nephews, or gossip with her 12-year-old sister, Pang, reading People magazine on the couch. She's 15 but looks only 6 or 7. Her small bony body--back arched, eyes rolling, hands seized in a perpetual clench--lies on a bed around which the life of her large family revolves.
When Lia was 4, she had "the big one," a grand mal epileptic seizure that starved her brain of oxygen for two hours. Since then she has existed in what her American doctors call "a persistent vegetative state." Her family would tell you differently. They would say that Lia's soul is wandering, that it is lost.
Lia and her family, Hmong refugees from the highlands of Laos, are among the central characters in "When the Spirit Catches You and You Fall Down" (Farrar, Straus & Giroux), Anne Fadiman's complex and haunting new work of nonfiction. Today, in this worn living room in suburban Sacramento, there's evident mutual affection between the New York-based author and her Hmong friends. Fadiman, sitting cross-legged on the floor, presents a copy of her book to Lia's mother, Foua, and her father, Nao Kao. Her interpreter sits close by, translating.
Lia's parents admire the book's cover, adorned with the photo of their invalid daughter as a plump, beautiful, healthy toddler. They will not read it because they neither speak nor read English, but they know the book will tell the world that their daughter is important.
The physician-memoirist Abraham Verghese calls Fadiman's new book "a cautionary tale." It tells us what can happen when a technically advanced medical system clashes with a rural people who believe that when a person is sick the whole world is out of balance, that there is no such thing as a body without a soul, that there can be no curing without healing.
Fadiman, an award-winning former medical reporter for Life magazine, learned about Lia from an old college friend, then chief resident of the Merced Community Medical Center in the San Joaquin Valley. An estimated 60,000 Hmong refugees, the highest concentration in the nation, have settled in Merced. Fadiman's doctor friend told her about the case of the little Hmong girl who had caused enormous turmoil at the hospital.
She proposed a piece to then-New Yorker Editor Bob Gottlieb, who assigned the story (which, because of editorial turnover, never ran) in 1988. "I had a fair amount of confidence in my reporting by then," Fadiman confesses ruefully, "which turned out to be completely unfounded because I got to Merced [where the Lees then lived] and I felt like a total fool. I'd spent nine years learning how to be a reporter, and I arrived and I couldn't even find a Hmong. I was just incompetent beyond belief until May Ying came along."
May Ying Xiong (now May Ying Xiong Ly) was the "cultural broker" Fadiman desperately needed to approach Lia's family. Doctors and social workers had warned Fadiman that the family would never speak to her. Luckily, Ly, by virtue of her family status, possessed impeccable credentials in the Hmong community.
"May Ying was very smart and knew instinctively what both sides of a mediated conversation needed," Fadiman says. "I went to the Lees with absolute fear and not much hope. But I went in with May Ying, and I just instantly adored the Lees. They were so different from how the doctors had described them: warm, articulate, friendly, smart."
Ly demurs, laughing. "Actually, it was Anne. She was very gentle and patient, and from the beginning it was clear that she really wanted to understand Hmong culture."
The Hmong are an ancient Asian hill tribe who have resisted assimilation for millenniums. To avoid subjugation by the Chinese, about half a million Hmong migrated from China to Laos in the early 19th century. A stateless people, for the last hundred years they have kept to themselves in high, inaccessible mountain villages ("Fish swim in the water; birds fly in the air; the Hmong live in the mountains," goes one proverb), where, as slash and burn farmers, they grew rice and corn for their own consumption and, with encouragement from the French colonial government in Laos, opium as a cash crop.
During the Vietnam War, the CIA recruited the Hmong, who had a historic reputation for toughness and valor, to fight the Viet Cong and Pathet Lao. They endured the highest casualty rates of that sorry war. When the Americans withdrew, the Hmong paid for their loyalty with more misery. (To this day, Hmong veterans have not received the military benefits promised them by the CIA.)
Lia's parents fled their village on foot, with toddlers in tow and babies on their backs, pursued by communist soldiers. It took them 26 days to reach Thailand, dodging land mines, bullets and walls of flame. Three of their children died along the way or in refugee camps. The Lees came to America, as Fadiman points out, "not to become Americans but because America, by embroiling them in a forgotten corner of the Vietnam War, made it impossible for them to stay."
Ill-prepared for life here, the Hmong have the highest--70%--welfare dependency rate of any refugee group in America. Though most Hmong would far prefer the opportunity to farm, they consider welfare as fair redress for the terrible losses they suffered for their adopted country. The Hmong also consider the cutoff of welfare to be yet another American betrayal.
The agricultural skills that Nao Kao and Foua, Lia's parents, brought with them never enabled them to find jobs in California. Their children, however, have all been exemplary students; five have been to college and hold steady employment.
In the first few months of her life, Lia Lee had at least 20 epileptic seizures. Her parents considered epilepsy a "spiritually distinguished disease," an affliction that might mark someone for life as a shaman, or healer. The Hmong word for the symptoms of epilepsy means "the spirit catches you and you fall down."
To heal such a serious sickness, a traditional shaman performs a special ceremony that includes an animal sacrifice. Then, in a trance state, the shaman journeys to the unseen world to find the soul of the sick person and to barter with the spirits who might have stolen that soul. If the shaman fails, it means the soul cannot be won back.
Lia's doctors at Merced Community Medical Center, for their part, diagnosed her seizures as the result of a misfiring of aberrant brain cells. They knew they had to stop the seizures by whatever means necessary. Lia's supervising pediatricians, Drs. Neil and Peggy Ernst, are Phi Beta Kappa graduates of UC Berkeley--dedicated and compassionate doctors. The Ernsts were paged whenever Lia came into the ER and, no matter how late, they drove to the hospital.
Unfortunately, at the time of Lia's worst crises, the hospital had no funds to hire Hmong interpreters. Lia's parents frequently signed consent forms, but they had no idea what they'd agreed to. When Lia's doctors prescribed a complicated regimen of anti-convulsant drugs, her parents were bewildered. They could not read the labels, and they did not understand the consequences of noncompliance.
The Lees preferred to feed their sick daughter special herbs they grew themselves. They tied amulets around her wrists, and they invited shamans to perform "soul-catching" ceremonies. They did not understand the purpose of the many invasive procedures--including frequent blood tests, spinal taps, transfusions (all taboo)--that were done to their daughter.
"The Hmong have a history of hating coercion," Fadiman says, "and they see medical intervention they don't want as a form of coercion."
In person, Fadiman fits her own description of the Hmong: warm, articulate, friendly and smart. Her deep empathy for the Lee family, as well as for their harried physicians, is the steady bass note of her narrative. If in her book she blends the lyricism of a seasoned essayist with sharp reportorial detail, it's partly because it's in her blood. Her father is the prolific essayist-editor Clifton Fadiman, and her mother, Annalee Jacoby Fadiman, was a war correspondent during World War II.
During the course of writing her book, Fadiman herself experienced serious medical problems, as did her husband, her father and her daughter. These crises forced her "into the maw of American medicine at its best and worst." Like the Lees, she experienced the helplessness any parent feels when a child is seriously sick, deepening her understanding of the Lees' anguish. There are no heroes in her harrowing tale.
Cross-cultural medicine is, increasingly, being added to the curricula of American medical schools, but Fadiman does not doubt that what happened to Lia could happen again.
"These problems don't have easy solutions," she says thoughtfully. "It's all very well to take a class, and it's another thing if you're a harried resident in the ER at 3 a.m. and you've been up for 24 hours and you're surrounded by a bunch of gesticulating people speaking a language you don't understand. You're not going to be thinking about cultural sensitivity--you want to get that catheter in."
In the most nightmarish episode in Fadiman's chronicle, she describes how 2-year-old Lia was virtually kidnapped from her home by Merced County Child Protective Services officials and placed in foster care. Her physicians were alarmed that if Lia did not receive regular levels of medication, her seizures would ultimately cause brain damage. The Lees, unaware of the relationship between the seizures and brain damage, thought the medicine was making their daughter sicker.
The Lees clearly doted on their daughter, and Foua wept inconsolably during Lia's absence, several times threatening suicide. After nearly a year in foster care, during which time the Lees were counseled in how to administer medication, Lia was finally returned to them.
Fadiman notes the irony of her learning to be a good mother from someone officially labeled a child abuser. "After I spend time with the Lees, American families just feel like icicles," she says. "The Hmong love children and they never let them cry. They're always carried in a nyias [baby carrier] or dandled. Hmong families always sleep together.
"The American sense that the family is this isolated thing, that you grow up and move 3,000 miles away from your parents and then you don't owe them anything, that your family consists of a tiny nuclear family and that you raise your children without the help of extended family. . . . I don't know . . . all of those customs now seem odd to me after exposure to the Hmong."
Her book is already being hailed in pre-publication as a unique anthropological study of American society. "I've always felt about Lia's story," Fadiman says, "that she's this little thing, but around her is the whole universe. It's like Hmong culture in general: You pull on a gossamer thread, and it becomes a string, and it becomes a rope, and it becomes the world, and it becomes the whole universe . . . and everything is connected to everything.
"This is a book about everything that is important to me: family values, what is a good parent, what is a good doctor, what is a community and what are the strongest and weakest parts of our own culture."
* Anne Fadiman will read from and sign copies of "When the Spirit Catches You and You Fall Down" at Vroman's Bookstore in Pasadena on Oct. 2 at 7 p.m.