Homegrown Medicine: Doctors return to help Hmong community
Wednesday, September 26, 2012
By YESENIA AMARO - yamaro@mercedsunstar.com
Lia Lee dies; daughter of Hmong refugees changed American views of medicine
Tuesday, September 18, 2012
Foua Yang crumpled in tears on the staircase in her south Sacramento home, just feet from the empty hospital bed where her daughter Lia Lee lived most of her life. “I’m deeply saddened that Lia’s no longer of this world, I love her very much,” said Yang, clutching a picture of Ms. Lee as a lively 4-year-old in traditional Hmong finery, running from her mother. Ms. Lee — who in July celebrated her 30th birthday in that bed, surrounded by her mother, brother, seven sisters and numerous nieces, nephews and cousins — died Aug. 31 after a lifelong battle against epilepsy, cerebral palsy, pneumonia and sepsis, a toxic reaction to constant infection. Her family’s struggles with hospitals, doctors and social workers were chronicled in Anne Fadiman’s best-selling 1997 book, “The Spirit Catches You and You Fall Down,” which altered Americans’ views on cross-cultural medical treatment. She became a symbol for disabled children and immigrants intimidated and confused by Western medicine. At 4-foot-7 and 47 pounds, Ms. Lee could speak only with her eyes and her cries. Stricken by seizures since she was a few months old, she battled through, singing Hmong folk songs and joyfully running around her neighborhood. At 4, she suffered a grand mal seizure that stole her speech and her ability to move. “Even though she’s never spoken a word since the grand mal seizure, Lia taught a lot of doctors and nurses to care for people from other cultures more sensitively,” Fadiman said. Medical schools and universities use Fadiman’s book, and shamans are allowed to practice in California hospitals. Doctors had predicted Ms. Lee’s imminent death after her seizure, and her parents took her home from the hospital to die. But when her parents removed her feeding tube, Ms. Lee cried out. Her sister Mai Lee, 32, said Ms. Lee’s strong will to live, nurtured by her family’s love, faith and constant care, proved the doctors wrong. “Lia’s legacy is to give families with sick children the strength and courage to question their doctors,” Mai Lee said. “We didn’t ask those questions.” Ms. Lee’s primary doctors, Neil Ernst and Peggy Philp, said the girl and her family profoundly changed medicine. “Lia’s a game changer,” Ernst said. “She’s altered so many people’s approaches to dealing with patients with different beliefs.” Philp added, “We saw her life ending when she was 5, but her mother’s unconditional love taught me the value of life.” The book details the family’s odyssey. Ms. Lee’s parents, Yang and Nao Kao Lee, fled their mountain village after Laos fell to the communists in 1975. After years in Thai refugee camps, they were resettled in Merced, Calif., in 1980, and moved to Sacramento in 1996. Ms. Lee was born July 19, 1982. The day before Thanksgiving in 1986, she suffered her near-fatal seizure at the family’s kitchen table. Her father declared, “When the spirit catches you, you fall down,” meaning a powerful spirit was locked inside her body, Mai Lee said. Ms. Lee was rushed to the hospital for the 16th time. Her seizure lasted two hours. Her temperature rose to 104.9. Her blood pressure plunged. Her flailing hands turned blue. She was rushed to a hospital in Fresno, Calif., where doctors declared her brain-dead. The family looked for a funeral home and prepared Ms. Lee’s funeral clothes for her journey through the spirit world.But when family members removed the tubes, Ms. Lee’s cries convinced them that she was not ready to die. Her parents, like most traditional Hmong, believe in ancestor spirits. They asked a shaman to travel to the highest level in the spirit world and strike a bargain: “Give us our daughter’s life, and we’ll give you a life in exchange.” They sacrificed a pig and got their wish, said their oldest daughter, Zoua Lee, 48. But because of language and cultural differences, the family had trouble administering her medicine, and she spent a year in foster care. Fadiman said there are no villains here — that both the Lee family and the doctors had the best intentions. Ms. Lee was the center of every family ceremony, every birthday, smiling with her eyes and even giggling occasionally. Every day, her mother and sisters would talk to her, feed her, hold her and caress her. Over her bed, there is a photo of her father, who died in 2003. “It’s extraordinary she survived so long in a vegetative state,” Fadiman said. “It’s a testimony to the exceptional loving care her family gave her.” Source
Read more...Life Went On Around Her, Redefining Care by Bridging a Divide
In 1988, when Anne Fadiman met Lia Lee, then 5, for the first time, she wrote down her impressions in four spare lines that now read like found poetry: barefoot mother gently rocking silent child diaper, sweater, strings around wrist like a baby, but she’s so big mother kisses and strokes her The story of Lia, the severely brain-damaged daughter of Hmong refugees who had resettled in California, became the subject of Ms. Fadiman’s first book, “The Spirit Catches You and You Fall Down,” published in 1997. Its title is the English translation of the condition known as qaug dab peg (pronounced “kow da pay”), the Hmong term for epilepsy, from which Lia had suffered since infancy. In traditional Hmong belief, qaug dab peg, like many illnesses, is spiritual in origin, caused when the soul becomes separated from the body. A traditional cure might entail visits from a shaman, who would attempt to reunite body and soul. A work of narrative nonfiction, Ms. Fadiman’s book is a cautionary tale about the cultural chasm between Lia’s family, with its generations-old animist beliefs, and her rationalist American doctors. “In some sense, I was trying to provide a way of controlling her seizures with Western methods and Western medicines,” said Dr. Neil Ernst, who with his wife, Dr. Peggy Philp, was one of the pediatricians who treated Lia early on. “And in some sense, the Lees were giving up control of their child to a system that they didn’t understand.” 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?’ ” A labor of eight years, “The Spirit Catches You and You Fall Down” is also the story of the immense benefits of tradition, which can furnish, Ms. Fadiman makes clear, a level of familial devotion less often seen among modern Americans. Lia spent her entire life at home, assiduously cared for by her family, and it was this devotion, Ms. Fadiman came to feel, that kept her alive for so long. “She was never shunted to the periphery,” Ms. Fadiman, the daughter of the author and television personality Clifton Fadiman and the journalist Annalee Jacoby Fadiman, said on Wednesday. “I remember her most in her mother’s arms. Family life went on around her and in some ways revolved around her.” The 14th of 15 children born to her mother, Foua Yang, and her father, Nao Kao Lee, Lia Lee was born on July 19, 1982, in Merced, Calif. — the first of her parents’ children born in the United States, and the first born in a hospital. She was plump, porcelain-skinned, lively and beautiful. The Lees had arrived in the United States two years earlier with their seven living children, a blanket, a mortar and pestle and little else. They had been farmers in their native Laos; three of their children died there when they were very young. During the Vietnam War, many Hmong were recruited by the United States to fight the North Vietnamese in Laos; after Laos fell to the Communists in 1975, 150,000 Hmong, in fear of their lives, fled the country. The Lees were among them. It took the family until 1980 to reach the United States. Along the way they endured a perilous odyssey that included an attempt to flee their village before being forced back at gunpoint by Vietnamese soldiers, and a later attempt, culminating in a 26-day walk to Thailand, where they spent a year in refugee camps. During these five years, three more of their children died. In the United States, the Lees eventually settled in a modest apartment in Merced, about 120 miles southeast of San Francisco. By the time Ms. Fadiman met them, Merced’s population was one-sixth Hmong. Lia had her first seizure when she was about 3 months old. At Merced Community Medical Center, a resident misdiagnosed her condition. Communication was impossible: the Lees spoke no English, and the hospital had no Hmong interpreter. “My parents weren’t able to convey exactly that she was having seizures,” Lia’s sister Mai, now 32, said in an interview on Wednesday. “The word ‘seizure’ didn’t come out. To them, they saw it as her soul being tampered with by something of a different realm.” Lia’s seizures continued; epilepsy was eventually diagnosed and anti-seizure medication prescribed. But to her parents, qaug dab peg was literally a mixed blessing: on the one hand, Lia’s soul had been taken from her and she needed it back; on the other, her condition portended spiritual giftedness, something many traditional cultures ascribe to epilepsy. Perhaps, the Lees believed, Lia was destined to become a shaman herself. The Lees did not always give Lia her medication, Ms. Fadiman wrote, because they did not want to interfere with qaug dab peg entirely. To encourage her soul’s return, her parents gave her herbs and amulets. She was sometimes visited by a Hmong shaman, who performed a ritual that included chanting, beating a gong and sacrificing a chicken or pig. (The strings around Lia’s wrist noted by Ms. Fadiman are used in Hmong tradition to help protect people from malevolent spirits.) All this baffled Lia’s doctors. “I felt that I was trying to penetrate a very dense wall — a cultural wall — and didn’t have the tools to do it,” Dr. Ernst said. The seizures worsened; by the time Lia was 4 ½, she had made more than 100 outpatient visits to medical facilities and been admitted to the hospital 17 times. When she was not quite 3, in frustration at what he viewed as her parents’ refusal to administer her medication, Dr. Ernst had Lia legally removed from the family home. She spent a year in foster care — a time, Ms. Fadiman reported, of great trauma for Lia and great bitterness for her family — before being returned to her parents. (In recent years, Dr. Ernst and Mai Lee said, there has been a rapprochement between Lia’s family and her doctors.) In 1986, when Lia was 4, she suffered a grand mal seizure that lasted nearly two hours before doctors were able to bring it under control. At some point, amid the many procedures her condition required that day, an infection set in. She went into septic shock, and her organs began to fail. By the time she was stabilized, Lia had lost higher brain function. Her doctors expected her to die. She did not die. She could breathe and whimper but could not speak; she was capable of little voluntary movement but could still feel pain. It was unclear how much she could see or hear. Lia no longer had seizures, because she now had vastly reduced electrical activity in her cerebral cortex, the brain’s outermost layer. She grew only slightly, as is typical of children with severe brain damage: by the age of 30, she was 4 feet 7 inches and weighed 47 pounds. For 26 years, her days varied little: her parents bathed her, fed her, flexed her stiffened limbs, kissed, caressed and tenderly talked to her. There were visits to doctors in Merced and later in Sacramento, where the family moved in 1996. There were periodic visits from a shaman, intended not so much to cure Lia as to ease her suffering. “Everything that my parents had done for her is all manual labor,” Mai Lee said on Wednesday. “Carrying her from place to place, transporting her to appointments here and there, it was all done manually. They did that for a very long time.” Nao Kao Lee, Lia’s father, died in 2003. Besides her mother, Foua Yang, and her sister Mai, her survivors include a brother, Cheng, and six other sisters, Chong, Zoua, May, Yer, True and Pang. In Merced and far beyond, Lia’s legacy is pervasive. In 1996, largely in response to her case, Healthy House, a social-service agency that facilitates medical care for Merced County’s non-English-speaking residents, was founded in Merced, the county seat. Among its services is an interpreter training program, which provides medical interpreters in a half-dozen languages, including Hmong. At Mercy Medical Center Merced, the current incarnation of Merced Community Medical Center, Hmong shamans are now allowed to visit patients and practice a limited number of their traditional arts. (Animal sacrifice is excluded.) “The Spirit Catches You and You Fall Down,” continuously in print and released this year in an updated edition, has extended Lia’s reach to a new generation of doctors. At the Yale School of Medicine, for instance, the incoming class is required to read it — a tradition that was begun a dozen years ago, well before Ms. Fadiman herself began teaching at Yale, where she is the Francis writer in residence. And as hospital wards across the country become ever more diverse, seasoned doctors, too, have found there is much to be learned from Lia’s story. Among them is Dr. Nuland, the son of Jewish immigrants from Eastern Europe, who received his medical training in New Haven in the 1950s. “Most wards were filled with Italians, Irish and Jews,” he said, recalling those years. “We had an occasional Gypsy, an occasional Chinese person and some Hispanics, and we would walk among them with our lordly presence. You’d learn a couple of words of Italian, a couple of words of whatever, and you’d use them with patients and think you were being very clever.” He added: “In our day, the whole thing was to assimilate, to look and act like a WASP. We could have provided so much comfort to patients who looked like our parents. And we just didn’t.” Source
Read more...Vang Pao Elementary School is dedicated in S/E Fresno
FRESNO, Calif. (KFSN) -- A dedication ceremony Saturday celebrated Fresno Unified's newest campus, and the man it's named after. Hundreds of members of the Hmong community gathered at Vang Pao Elementary School in Southeast Fresno to honor their late leader. Some of his family members also traveled from Southern California to attend the event. General Vang Pao led Hmong troops in support of the U.S. during the Vietnam War. He was also a strong supporter of education in his community. "It's a tremendous opportunity for people in the community and its a great recognitions of the great work General Vang Pao did. Not only for the people in the area, but for everyone in the Hmong community. Its a great opportunity for everyone," said congressional candidate Brian Whelan (R). Vang Pao Elementary School was built with funds from Measure K. It welcomed its first class of students last month. (Copyright ©2012 KFSN-TV/DT. All Rights Reserved.) Source
Read more...Tragedy and tradition inform Hmong couple’s grandparenting
15 people killed in northern Vietnam landslide
By TRAN VAN MINH Associated Press Published: Friday, Sep. 7, 2012 - 8:00 pm HANOI, Vietnam -- Police say 15 villagers who were illegally taking tin ore from a mine in northern Vietnam have died in a landslide. A police officer says the disaster occurred early Friday in Yen Bai province following hours of torrential rain as the villagers were collecting tin ore from a mine operated by a private company. The officer declined to give his name, citing the policy of his department. The officer says at least four other people were missing, adding that the victims were from the country's mostly poor Hmong ethnic minority group. Landslides and floods are common in Vietnam, especially during the rainy season. Source
Read more...Minnesota witnesses a first ever Hmong-American delegate to the Democratic National Convention, being born in a refugee camp in Thailand but now living the American dream
One of Minnesota’s delegates to the Democratic National Convention has a unique status, and a classic American story to tell. Kaying Thao of Roseville is the nation’s only Hmong-American delegate. “I can do all the reading I want on the process, but nothing compares to this. I feel so proud to be an American. I feel so proud to be a citizen. And I’m doing this for my kids,” said Thao, her voice choked with emotion. The 34-year-old mother of three said she’s living the American dream. “I was born in a Thai refugee camp but raised here all my life. My parents had no idea what was going on,” she added. “It’s a privilege for me to be a part of this. I can’t even explain it.” Kaying Thao’s venture into public life began last fall when she became the first Hmong-American elected to the Roseville Area School Board. Source
Read more...Fresno Unified prepares to open Vang Pao Elementary
FRESNO, Calif. (KFSN) -- As Fresno Unified prepares to head back to school excitement is building around a new campus set to open for the first time in less than two weeks. Among those waiting for the doors to open at Vang Pao Elementary at Heaton and Cedar, is the Hmong community, who until now has not had a school named after a Hmong leader. As teachers move into their new classrooms at Vang Pao Elementary School every once in awhile they'll stop to soak in their new surroundings. "I think having an actual name, Vang Pao, and what he stood for as far as education being the key to success, that's going to be new and something that's going to be resonating through the halls of this school," teacher Steven Lombardi said. That's because many of them are coming from Southeast Elementary School, a campus suited to serve as a temporary location until this new school was built. "I was originally with southeast and all of our children were bussed in every day and for them to truly have a neighborhood school is just wonderful," teacher Diana Coakley said. "it's like moving into a new house. It's got the new house smell and just high end technology." Among the key features of the two-story 60-thousand square foot campus are four kindergarten classrooms with their own restrooms and a shared workroom for teachers, an outdoor and indoor stage with a state-of-the-art sound system and lighting and a washroom where students can practice good hygiene before they even reach the cafeteria. But probably the most important feature of all is the school's name. "Education was such an important aspect of his life and how he felt education was something he thought everyone should have," Vang Pao Elementary Principal Teresa Calderon said. General Vang Pao was the beloved leader of the Hmong community who once led Hmong troops in support of the United States during the Vietnam War. Now his legacy is a permanent part of the Southeast Fresno community and one children carry on. (Copyright ©2012 KFSN-TV/DT. All Rights Reserved.) Source
Read more...Turning swords into plowshares, and back again
By WALTER PINCUS The Washington Post WASHINGTON — How long does it take for enemies to become allies, and allies to become enemies? On July 3 in Hanoi, U.S. Secretary of State Hillary Rodham Clinton celebrated the 20th anniversary of that country's Fulbright exchange program, which has involved 8,000 American and Vietnamese students, scholars, educators and businesspeople. Reading her talk reminded me of a day 42 years ago when I flew over the Ho Chi Minh trail in Laos in the back of a two-seater forward air control plane. The pilot, a U.S. Air Force officer flying out of uniform in an unacknowledged operation, was trying to find North Vietnamese or Viet Cong troops or their base camps and target them for the Royal Lao Air Force planes that were circling in the area. I was there as an investigator for the Senate Foreign Relations Committee, sent by its chairman, Arkansas Democratic Sen. J.W. Fulbright, to get on-the-scene facts about what was going on. Fulbright wanted to get a true picture of the war out to the American people, in this case the secret U.S. role in Laos along with other unpublicized activities related to the war. For example, we had an agreement with the South Korean government that gave higher salaries to its troops in Vietnam than U.S. soldiers received. But that detail had not been made public. Richard Nixon was president, the war was going badly, and fighting would go on for nearly five more years. In the end, more than 58,000 U.S. service members died, and the losses among Vietnamese soldiers and civilians and Laotians were many times that. The Fulbright hearings on the Vietnam War played a role in getting the public to understand the issues involved and eventually led to public pressure to end U.S. combat operations in that country. In Hanoi on July 3, Clinton talked about another side of the late senator's impact on U.S. foreign policy. She talked of the Fulbright Exchange Program that "helps Americans to visit other countries to learn and form lasting bonds, and we want people from other countries to do the same in the United States." Fulbright, she said, "believed so strongly that what was most important was breaking down the walls of misunderstanding and mistrust." It doesn't mean "we will agree on everything, because no two people, let alone two nations, agree on everything," she said. It also doesn't mean that the past is forgotten. In her meeting with Vietnamese Foreign Minister Pham Binh Minh, Clinton said she discussed "legacy issues such as Agent Orange." The U.S. sprayed the herbicide on more than one-third of rural South Vietnam to clear forests and croplands to deny hiding places to Viet Cong and North Vietnamese troops. Now, both the U.S. and private groups are working to deal with the diseases that have emerged among people directly or indirectly exposed to the dioxin. The Vietnam Red Cross estimates some 3 million Vietnamese children and adults "have suffered adverse health effects, congenital and developmental defects," according to a 2010 Aspen Institute study. The Vietnam War also hung over talks Wednesday in Vientiane, Laos, where Clinton told the U.S. Embassy staff "the past is always with us." In Laos, the U.S. has provided nearly $59 million since 1995 to help move more than a million cluster munitions. An estimated 80 million cluster munitions are scattered across the country and "continue to kill or injure about a hundred people a year," she said. In a meeting with Laos Deputy Prime Minister/Foreign Minister Thongloun Sisoulith, she praised Laotian government efforts to reintegrate families from the Hmong tribe who, because they supported the U.S. effort in Vietnam, had to flee to Thailand. She also said the U.S. would continue to provide humanitarian aid to Hmong families, and to communities located near where the Hmong live who suffered during the war. There is another side to our Laotian and Vietnamese relations. The U.S.-Laos discussions dealt in part with the importance of unity among members of the Association of Southeast Asian Nations on pressing regional issues, as well as the forthcoming entry of Laos into the World Trade Organization. The Fulbright program may make a difference in those areas, too. In Hanoi, Clinton traced some of the Fulbright program's impact, saying "alumni are already major figures in Vietnamese policies," including deputy prime ministers and the foreign minister. Today, she said, "there are more than 15,000 Vietnamese students in the United States, and I believe this generation of students and scholars is well positioned to make great contributions to Vietnam's future." In reflecting on history's trajectory and Clinton's remarks, a cautionary note arises. During the 1960s, when Washington and Tehran were allies, the Iranian student population in the United States was about 12,000 — among the largest in the country. Today, "if you are an Iranian citizen, you are not eligible for the Fulbright program, unfortunately," reads the State Department website. It's a binational program based on a formal country-to-country agreement, and since there are no diplomatic relations, the exchange program does not operate in Iran. Instead, military threats are being exchanged. It probably would take longer than 20 years to see Iran as an ally if we attack to halt Tehran's nuclear program. The aftermath would be a mess, particularly as we attempt to withdraw from Afghanistan and deal with Iraq as well as Syria at the same time that we try to get our own finances stabilized and our government in working order. How long does it take for enemies to become allies, and allies to become enemies? How long, indeed. Walter Pincus covers military and defense issues for The Washington Post and writes the Fine Print column. Source
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