Neil ernst and peggy philp

Praise for

The Spirit Catches You and You Fall Down

“Fadiman describes with extraordinary skill the colliding worlds of Western medicine and Hmong culture.”

—The New Yorker

“This fine book recounts a poignant tragedy…It has no heroes or villains, but it has an abundance of innocent suffering, and it most certainly does have a moral…[A] sad, excellent book.”

—Melvin Konner, The New York Times Book Review

“An intriguing, spirit-lifting, extraordinary exploration of two cultures in uneasy coexistence…A wonderful aspect of Fadiman’s book is her even- handed, detailed presentation of these disparate cultures and divergent views —not with cool, dispassionate fairness but rather with a warm, involved interest that sees and embraces both sides of each issue…Superb, informal cultural anthropology—eye-opening, readable, utterly engaging.”

—Carole Horn, The Washington Post Book World

“This is a book that should be deeply disturbing to anyone who has given so much as a moment’s thought to the state of American medicine. But it is much more…People are presented as [Fadiman] saw them, in their humility and their frailty—and their nobility.”

—Sherwin B. Nuland, The New Republic

“Anne Fadiman’s phenomenal first book, The Spirit Catches You and You Fall Down, brings to life the enduring power of parental love in an impoverished refugee family struggling to protect their seriously ill infant daughter and ancient spiritual traditions from the tyranny of welfare bureaucrats and intolerant medical technocrats.”

—Al Santoli, The Washington Times

“A unique anthropological study of American society.” —Louise Steinman, Los Angeles Times

“Some writers…have done exceedingly well at taking in one or another human scene, then conveying it to others—James Agee, for instance…and George Orwell…It is in such company that Anne Fadiman’s writing belongs.”

—Robert Coles, Commonweal

“When the Lees hedged their bets in 1982 in Merced by taking Lia to the hospital after one of her seizures, everybody lost. Fadiman’s account of why Lia failed to benefit over the years from Western medicine is a compelling story told in achingly beautiful prose.”

—Steve Weinberg, Chicago Tribune

“A deeply humane anthropological document written with the grace of a lyric and the suspense of a thriller.”

—Abby Frucht, Newsday

“Fadiman’s meticulously researched nonfiction book exudes passion and humanity without casting a disparaging eye at either the immigrant parents, who don’t speak English, or the frustrated doctors who can’t decipher the baby’s symptoms…The Spirit Catches You and You Fall Down conveys one family’s story in a balanced, compelling way.”

—Jae-Ha Kim, The Cleveland Plain Dealer

“Fadiman’s sensitive reporting explores a vast cultural gap.” —People Magazine

“Compellingly written, from the heart and from the trenches. I couldn’t wait to finish it, then reread it and ponder it again. It is a powerful case study of a medical tragedy.”

—David H. Mark, Journal of the American Medical Association

“The Spirit Catches You and You Fall Down is Fadiman’s haunting account, written over a nine-year period, of one very sick girl in Merced, California…

What happens to Lia Lee is both enlightening and deeply disturbing.” —Kristin Van Ogtrop, Vogue

“Fadiman gives us a narrative as compelling as any thriller, a work populated by the large cast of characters who fall in love with Lia. This is a work of passionate advocacy, urging our medical establishment to consider how their immigrant patients conceptualize health and disease. This astonishing book helps us better understand our own culture even as we learn about another— and changes our deepest beliefs about the mysterious relationship between body and soul.”

—Elle

“The other day, I picked up a book I had no intention of buying. Eight hours later, having lifted my head only long enough to pay for the book and drive home, I closed Anne Fadiman’s The Spirit Catches You and You Fall Down and started calling friends…This is an important book.”

—Wanda A. Adams, The Honolulu Advertiser

Contents

Preface

1 / Birth 2 / Fish Soup

3 / The Spirit Catches You and You Fall Down 4 / Do Doctors Eat Brains?

5 / Take as Directed 6 / High-Velocity Transcortical Lead Therapy

7 / Government Property 8 / Foua and Nao Kao

9 / A Little Medicine and a Little Neeb 10 / War

11 / The Big One 12 / Flight

13 / Code X 14 / The Melting Pot 15 / Gold and Dross

16 / Why Did They Pick Merced? 17 / The Eight Questions 18 / The Life or the Soul

19 / The Sacrifice

Note on Hmong Orthography, Pronunciation, and Quotations Notes on Sources

Bibliography Acknowledgments

Index

Preface

Under my desk I keep a large carton of cassette tapes. Even though they have all been transcribed, I still like to listen to them from time to time.

Some of them are quiet and easily understood. They are filled with the voices of American doctors, interrupted only occasionally by the clink of a coffee cup or the beep of a pager. The rest of the tapes—more than half of them—are very noisy. They are filled with the voices of the Lees, a family of Hmong refugees from Laos who came to the United States in 1980. Against a background of babies crying, children playing, doors slamming, dishes clattering, a television yammering, and an air conditioner wheezing, I can hear the mother’s voice, by turns breathy, nasal, gargly, or humlike as it slides up and down the Hmong language’s eight tones; the father’s voice, louder and slower and more vehement; and my interpreter’s voice, mediating in Hmong and English, low and deferential in each language. The hubbub summons a whoosh of sense-memories: the coolness of the red metal folding chair, reserved for guests, that was always set up as soon as I arrived in the apartment; the shadows cast by the amulet that hung from the ceiling and swung in the breeze on its length of grocer’s twine; the tastes of Hmong food, from the best (quav ntsuas,* a sweet stalk similar to sugarcane) to the worst (ntshav ciaj,* congealed raw pig’s blood).

I sat on the Lees’ red folding chair for the first time on May 19, 1988. Earlier that spring I had come to Merced, California, where they lived, because I had heard that there were some strange misunderstandings going on at the county hospital between its Hmong patients and its medical staff. One doctor called them “collisions,” which made it sound as if two different kinds of people had rammed into each other, head on, to the accompaniment of squealing brakes and breaking glass. As it turned out, the encounters were messy but rarely frontal. Both sides were wounded, but neither side seemed to know what had hit it or how to avoid another crash.

I have always felt that the action most worth watching is not at the center

of things but where edges meet. I like shorelines, weather fronts, international borders. There are interesting frictions and incongruities in these places, and often, if you stand at the point of tangency, you can see both sides better than if you were in the middle of either one. This is especially true, I think, when the apposition is cultural. When I first came to Merced, I hoped that the culture of American medicine, about which I knew a little, and the culture of the Hmong, about which I knew nothing, would in some way illuminate each other if I could position myself between the two and manage not to get caught in the cross fire.

Nine years ago, that was all theory. After I heard about the Lees’ daughter Lia, whose case had occasioned some of the worst strife the Merced hospital had ever seen, and after I got to know her family and her doctors, and after I realized how much I liked both sides and how hard it was to lay the blame at anyone’s door (though God knows I tried), I stopped parsing the situation in such linear terms, which meant that without intending to, I had started to think a little less like an American and a little more like a Hmong. By chance, during the years I worked on this book, my husband, my father, my daughter, and I all experienced serious illnesses, and, like the Lees, I found myself spending a lot of time in hospitals. I passed many hours in waiting rooms gnawing on the question, What is a good doctor? During the same period, my two children were born, and I found myself often asking a second question that is also germane to the Lees’ story: What is a good parent?

I have now known the people in this book for much of my adult life. I am sure that if I had never met Lia’s doctors, I would be a different kind of patient. I am sure that if I had never met her family, I would be a different kind of mother. When I pull a few cassettes from the carton beneath my desk and listen to random snatches, I am plunged into a pungent wash of remembrance, and at the same time I am reminded of the lessons I am still learning from both of the cultures I have written about. Now and then, when I play the tapes late at night, I imagine what they would sound like if I could somehow splice them together, so the voices of the Hmong and the voices of the American doctors could be heard on a single tape, speaking a common language.

A.F.

1

Birth

If Lia Lee had been born in the highlands of northwest Laos, where her parents and twelve of her brothers and sisters were born, her mother would have squatted on the floor of the house that her father had built from ax-hewn planks thatched with bamboo and grass. The floor was dirt, but it was clean. Her mother, Foua, sprinkled it regularly with water to keep the dust down and swept it every morning and evening with a broom she had made of grass and bark. She used a bamboo dustpan, which she had also made herself, to collect the feces of the children who were too young to defecate outside, and emptied its contents in the forest. Even if Foua had been a less fastidious housekeeper, her newborn babies wouldn’t have gotten dirty, since she never let them actually touch the floor. She remains proud to this day that she delivered each of them into her own hands, reaching between her legs to ease out the head and then letting the rest of the body slip out onto her bent forearms. No birth attendant was present, though if her throat became dry during labor, her husband, Nao Kao, was permitted to bring her a cup of hot water, as long as he averted his eyes from her body. Because Foua believed that moaning or screaming would thwart the birth, she labored in silence, with the exception of an occasional prayer to her ancestors. She was so quiet that although most of her babies were born at night, her older children slept undisturbed on a communal bamboo pallet a few feet away, and woke only when they heard the cry of their new brother or sister. After each birth, Nao Kao cut the umbilical cord with heated scissors and tied it with string. Then Foua washed the baby with water she had carried from the stream, usually in the early phases of labor, in a wooden and bamboo pack-barrel strapped to her back.

Foua conceived, carried, and bore all her children with ease, but had there been any problems, she would have had recourse to a variety of remedies that were commonly used by the Hmong, the hilltribe to which her family belonged. If a Hmong couple failed to produce children, they could call in a txiv neeb, a shaman who was believed to have the ability to enter a trance, summon a posse of helpful familiars, ride a winged horse over the twelve mountains between the earth and the sky, cross an ocean inhabited by dragons, and (starting with bribes of food and money and, if necessary, working up to a necromantic sword) negotiate for his patients’ health with the spirits who lived in the realm of the unseen. A txiv neeb might be able to cure infertility by asking the couple to sacrifice a dog, a cat, a chicken, or a sheep. After the animal’s throat was cut, the txiv neeb would string a rope bridge from the doorpost to the marriage bed, over which the soul of the couple’s future baby, which had been detained by a malevolent spirit called a dab, could now freely travel to earth. One could also take certain precautions to avoid becoming infertile in the first place. For example, no Hmong woman of childbearing age would ever think of setting foot inside a cave, because a particularly unpleasant kind of dab sometimes lived there who liked to eat flesh and drink blood and could make his victim sterile by having sexual intercourse with her.

Once a Hmong woman became pregnant, she could ensure the health of her child by paying close attention to her food cravings. If she craved ginger and failed to eat it, her child would be born with an extra finger or toe. If she craved chicken flesh and did not eat it, her child would have a blemish near its ear. If she craved eggs and did not eat them, her child would have a lumpy head. When a Hmong woman felt the first pangs of labor, she would hurry home from the rice or opium fields, where she had continued to work throughout her pregnancy. It was important to reach her own house, or at least the house of one of her husband’s cousins, because if she gave birth anywhere else a dab might injure her. A long or arduous labor could be eased by drinking the water in which a key had been boiled, in order to unlock the birth canal; by having her family array bowls of sacred water around the room and chant prayers over them; or, if the difficulty stemmed from having treated an elder member of the family with insufficient respect, by washing the offended relative’s fingertips and apologizing like crazy until the relative finally said, “I forgive you.”

Soon after the birth, while the mother and baby were still lying together

next to the fire pit, the father dug a hole at least two feet deep in the dirt floor and buried the placenta. If it was a girl, her placenta was buried under her parents’ bed; if it was a boy, his placenta was buried in a place of greater honor, near the base of the house’s central wooden pillar, in which a male spirit, a domestic guardian who held up the roof of the house and watched over its residents, made his home. The placenta was always buried with the smooth side, the side that had faced the fetus inside the womb, turned upward, since if it was upside down, the baby might vomit after nursing. If the baby’s face erupted in spots, that meant the placenta was being attacked by ants underground, and boiling water was poured into the burial hole as an insecticide. In the Hmong language, the word for placenta means “jacket.” It is considered one’s first and finest garment. When a Hmong dies, his or her soul must travel back from place to place, retracing the path of its life geography, until it reaches the burial place of its placental jacket, and puts it on. Only after the soul is properly dressed in the clothing in which it was born can it continue its dangerous journey, past murderous dabs and giant poisonous caterpillars, around man-eating rocks and impassable oceans, to the place beyond the sky where it is reunited with its ancestors and from which it will someday be sent to be reborn as the soul of a new baby. If the soul cannot find its jacket, it is condemned to an eternity of wandering, naked and alone.

Because the Lees are among the 150,000 Hmong who have fled Laos since their country fell to communist forces in 1975, they do not know if their house is still standing, or if the five male and seven female placentas that Nao Kao buried under the dirt floor are still there. They believe that half of the placentas have already been put to their final use, since four of their sons and two of their daughters died of various causes before the Lees came to the United States. The Lees believe that someday the souls of most of the rest of their family will have a long way to travel, since they will have to retrace their steps from Merced, California, where the family has spent fifteen of its seventeen years in this country; to Portland, Oregon, where they lived before Merced; to Honolulu, Hawaii, where their airplane from Thailand first landed; to two Thai refugee camps; and finally back to their home village in Laos.

The Lees’ thirteenth child, Mai, was born in a refugee camp in Thailand. Her placenta was buried under their hut. Their fourteenth child, Lia, was born in the Merced Community Medical Center, a modern public hospital that

serves an agricultural county in California’s Central Valley, where many Hmong refugees have resettled. Lia’s placenta was incinerated. Some Hmong women have asked the doctors at MCMC, as the hospital is commonly called, if they could take their babies’ placentas home. Several of the doctors have acquiesced, packing the placentas in plastic bags or take-out containers from the hospital cafeteria; most have refused, in some cases because they have assumed that the women planned to eat the placentas, and have found that idea disgusting, and in some cases because they have feared the possible spread of hepatitis B, which is carried by at least fifteen percent of the Hmong refugees in the United States. Foua never thought to ask, since she speaks no English, and when she delivered Lia, no one present spoke Hmong. In any case, the Lees’ apartment had a wooden floor covered with wall-to- wall carpeting, so burying the placenta would have been a difficult proposition.

When Lia was born, at 7:09 p.m. on July 19, 1982, Foua was lying on her back on a steel table, her body covered with sterile drapes, her genital area painted with a brown Betadine solution, with a high-wattage lamp trained on her perineum. There were no family members in the room. Gary Thueson, a family practice resident who did the delivery, noted in the chart that in order to speed the labor, he had artificially ruptured Foua’s amniotic sac by poking it with a foot-long plastic “amni-hook” that no anesthesia was used; that no episiotomy, an incision to enlarge the vaginal opening, was necessary; and that after the birth, Foua received a standard intravenous dose of Pitocin to constrict her uterus. Dr. Thueson also noted that Lia was a “healthy infant” whose weight, 8 pounds 7 ounces, and condition were “appropriate for gestational age” (an estimate he based on observation alone, since Foua had received no prenatal care, was not certain how long she had been pregnant, and could not have told Dr. Thueson even if she had known). Foua thinks that Lia was her largest baby, although she isn’t sure, since none of her thirteen elder children were weighed at birth. Lia’s Apgar scores, an assessment of a newborn infant’s heart rate, respiration, muscle tone, color, and reflexes, were good: one minute after her birth she scored 7 on a scale of 10, and four minutes later she scored 9. When she was six minutes old, her color was described as “pink” and her activity as “crying.” Lia was shown briefly to her mother. Then she was placed in a steel and Plexiglas warmer, where a nurse fastened a plastic identification band around her wrist and recorded her footprints by inking the soles of her feet with a stamp pad and pressing them

against a Newborn Identification form. After that, Lia was removed to the central nursery, where she received an injection of Vitamin K in one of her thighs to prevent hemorrhagic disease; was treated with two drops of silver nitrate solution in each eye, to prevent an infection from gonococcal bacteria; and was bathed with Safeguard soap.

Foua’s own date of birth was recorded on Lia’s Delivery Room Record as October 6, 1944. In fact, she has no idea when she was born, and on various other occasions during the next several years she would inform MCMC personnel, through English-speaking relatives such as the nephew’s wife who had helped her check into the hospital for Lia’s delivery, that her date of birth was October 6, 1942, or, more frequently, October 6, 1926. Not a single admitting clerk ever appears to have questioned the latter date, though it would imply that Foua gave birth to Lia at the age of 55. Foua is quite sure, however, that October is correct, since she was told by her parents that she was born during the season in which the opium fields are weeded for the second time and the harvested rice stalks are stacked. She invented the precise day of the month, like the year, in order to satisfy the many Americans who have evinced an abhorrence of unfilled blanks on the innumerable forms the Lees have encountered since their admission to the United States in 1980. Most Hmong refugees are familiar with this American trait and have accommodated it in the same way. Nao Kao Lee has a first cousin who told the immigration officials that all nine of his children were born on July 15, in nine consecutive years, and this information was duly recorded on their resident alien documents.

When Lia Lee was released from MCMC, at the age of three days, her mother was asked to sign a piece of paper that read:

I CERTIFY that during the discharge procedure I received my baby, examined it and determined that it was mine. I checked the Ident-A- Band® parts sealed on the baby and on me and found that they were identically numbered 5043 and contained correct identifying information.

Since Foua cannot read and has never learned to recognize Arabic numerals, it is unlikely that she followed these instructions. However, she had been asked for her signature so often in the United States that she had mastered the capital forms of the seven different letters contained in her name, Foua Yang.

(The Yangs and the Lees are among the largest of the Hmong clans; the other major ones are the Chas, the Chengs, the Hangs, the Hers, the Kues, the Los, the Mouas, the Thaos, the Vues, the Xiongs, and the Vangs. In Laos, the clan name came first, but most Hmong refugees in the United States use it as a surname. Children belong to their father’s clan; women traditionally retain their clan name after marriage. Marrying a member of one’s own clan is strictly taboo.) Foua’s signature is no less legible than the signatures of most of MCMC’s resident physicians-in-training, which, particularly if they are written toward the end of a twenty-four-hour shift, tend to resemble EEGs. However, it has the unique distinction of looking different each time it appears on a hospital document. On this occasion, FOUAYANG was written as a single word. One A is canted to the left and one to the right, the Y looks like an X, and the legs of the N undulate gracefully, like a child’s drawing of a wave.

It is a credit to Foua’s general equanimity, as well as her characteristic desire not to think ill of anyone, that although she found Lia’s birth a peculiar experience, she has few criticisms of the way the hospital handled it. Her doubts about MCMC in particular, and American medicine in general, would not begin to gather force until Lia had visited the hospital many times. On this occasion, she thought the doctor was gentle and kind, she was impressed that so many people were there to help her, and although she felt that the nurses who bathed Lia with Safeguard did not get her quite as clean as she had gotten her newborns with Laotian stream water, her only major complaint concerned the hospital food. She was surprised to be offered ice water after the birth, since many Hmong believe that cold foods during the postpartum period make the blood congeal in the womb instead of cleansing it by flowing freely, and that a woman who does not observe the taboo against them will develop itchy skin or diarrhea in her old age. Foua did accept several cups of what she remembers as hot black water. This was probably either tea or beef broth; Foua is sure it wasn’t coffee, which she had seen before and would have recognized. The black water was the only MCMC-provided food that passed her lips during her stay in the maternity ward. Each day, Nao Kao cooked and brought her the diet that is strictly prescribed for Hmong women during the thirty days following childbirth: steamed rice, and chicken boiled in water with five special postpartum herbs (which the Lees had grown for this purpose on the edge of the parking lot behind their apartment building). This diet was familiar to the doctors on the

Labor and Delivery floor at MCMC, whose assessments of it were fairly accurate gauges of their general opinion of the Hmong. One obstetrician, Raquel Arias, recalled, “The Hmong men carried these nice little silver cans to the hospital that always had some kind of chicken soup in them and always smelled great.” Another obstetrician, Robert Small, said, “They always brought some horrible stinking concoction that smelled like the chicken had been dead for a week.” Foua never shared her meals with anyone, because there is a postpartum taboo against spilling grains of rice accidentally into the chicken pot. If that occurs, the newborn is likely to break out across the nose and cheeks with little white pimples whose name in the Hmong language is the same as the word for “rice.”

Some Hmong parents in Merced have given their children American names. In addition to many standard ones, these have included Kennedy, Nixon, Pajama, Guitar, Main (after Merced’s Main Street), and, until a nurse counseled otherwise, Baby Boy, which one mother, seeing it written on her son’s hospital papers, assumed was the name the doctor had already chosen for him. The Lees chose to give their daughter a Hmong name, Lia. Her name was officially conferred in a ceremony called a hu plig, or soul-calling, which in Laos always took place on the third day after birth. Until this ceremony was performed, a baby was not considered to be fully a member of the human race, and if it died during its first three days it was not accorded the customary funerary rites. (This may have been a cultural adaptation to the fifty-percent infant mortality rate, a way of steeling Hmong mothers against the frequent loss of their babies during or shortly after childbirth by encouraging them to postpone their attachment.) In the United States, the naming is usually celebrated at a later time, since on its third day a baby may still be hospitalized, especially if the birth was complicated. It took the Lee family about a month to save enough money from their welfare checks, and from gifts from their relatives’ welfare checks, to finance a soul-calling party for Lia.

Although the Hmong believe that illness can be caused by a variety of sources—including eating the wrong food, drinking contaminated water, being affected by a change in the weather, failing to ejaculate completely during sexual intercourse, neglecting to make offerings to one’s ancestors, being punished for one’s ancestors’ transgressions, being cursed, being hit by a whirlwind, having a stone implanted in one’s body by an evil spirit master, having one’s blood sucked by a dab, bumping into a dab who lives in a tree

or a stream, digging a well in a dab’s living place, catching sight of a dwarf female dab who eats earthworms, having a dab sit on one’s chest while one is sleeping, doing one’s laundry in a lake inhabited by a dragon, pointing one’s finger at the full moon, touching a newborn mouse, killing a large snake, urinating on a rock that looks like a tiger, urinating on or kicking a benevolent house spirit, or having bird droppings fall on one’s head—by far the most common cause of illness is soul loss. Although the Hmong do not agree on just how many souls people have (estimates range from one to thirty-two; the Lees believe there is only one), there is a general consensus that whatever the number, it is the life-soul, whose presence is necessary for health and happiness, that tends to get lost. A life-soul can become separated from its body through anger, grief, fear, curiosity, or wanderlust. The life- souls of newborn babies are especially prone to disappearance, since they are so small, so vulnerable, and so precariously poised between the realm of the unseen, from which they have just traveled, and the realm of the living. Babies’ souls may wander away, drawn by bright colors, sweet sounds, or fragrant smells; they may leave if a baby is sad, lonely, or insufficiently loved by its parents; they may be frightened away by a sudden loud noise; or they may be stolen by a dab. Some Hmong are careful never to say aloud that a baby is pretty, lest a dab be listening. Hmong babies are often dressed in intricately embroidered hats (Foua made several for Lia) which, when seen from a heavenly perspective, might fool a predatory dab into thinking the child was a flower. They spend much of their time swaddled against their mothers’ backs in cloth carriers called nyias (Foua made Lia several of these too) that have been embroidered with soul-retaining motifs, such as the pigpen, which symbolizes enclosure. They may wear silver necklaces fastened with soul-shackling locks. When babies or small children go on an outing, their parents may call loudly to their souls before the family returns home, to make sure that none remain behind. Hmong families in Merced can sometimes be heard doing this when they leave local parks after a picnic. None of these ploys can work, however, unless the soul-calling ritual has already been properly observed.

Lia’s hu plig took place in the living room of her family’s apartment. There were so many guests, all of them Hmong and most of them members of the Lee and Yang clans, that it was nearly impossible to turn around. Foua and Nao Kao were proud that so many people had come to celebrate their good fortune in being favored with such a healthy and beautiful daughter.