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The Soul Catcher

Anne Fadiman Captures the Spirit of Hmong Culture in Her Book About an Epileptic Girl and the Immigrant Family Who--in the Face of a Bewildering American Medical Establishment--So Lovingly Tends Her

September 18, 1997|LOUISE STEINMAN | SPECIAL TO THE TIMES

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."

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