Lia Lee 1982-2012
Lia Lee died on August 31, 2012. She was thirty years old and had been in a vegetative state since the age of four. Until the day of her death, her family cared for her lovingly at home.
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THE SPIRIT CATCHES YOU AND YOU FALL DOWN (Chapter 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. That morning Nao Kao had sacrificed a pig in order to invite the soul of one of Lia’s ancestors, which was probably hungry and would appreciate an offering of food, to be reborn in her body. After the guests arrived, an elder of the Yang clan stood at the apartment’s open front door, facing East 12th Street, with two live chickens in a bag on the floor next to him, and chanted a greeting to Lia’s soul. The two chickens were then killed, plucked, eviscerated, partially boiled, retrieved from the cooking pot, and examined to see if their skulls were translucent and their tongues curled upward, both signs that Lia’s new soul was pleased to take up residence in her body and that her name was a good one. (If the signs had been inauspicious, the soul-caller would have recommended that another name be chosen.) After the reading of the auguries, the chickens were put back in the cooking pot. The guests would later eat them and the pig for dinner. Before the meal, the soul-caller brushed Lia’s hands with a bundle of short white strings and said, “I am sweeping away the ways of sickness.” Then Lia’s parents and all of the elders present in the room each tied a string around one of Lia’s wrists in order to bind her soul securely to her body. Foua and Nao Kao promised to love her; the elders blessed her and prayed that she would have a long life and that she would never become sick.
THE SPIRIT CATCHES YOU AND YOU FALL DOWN Copyright © 1997 by Anne Fadiman
Table of Contents
1 Birth 3
2 Fish Soup 12
3 The Spirit Catches You and You Fall Down 20
4 Do Doctors Eat Brains? 32
5 Take as Directed 38
6 High-Velocity Transcortical head Therapy 60
7 Government Property 78
8 Foua and Nao Kao 93
9 A Little Medicine and a Little Neeb 106
10 War 119
11 The Big One 140
12 Flight 154
13 Code X 171
14 The Melting Pot 181
15 Gold and Dross 210
16 Why Did They Pick Merced? 225
17 The Eight Questions 250
18 The Life or the Soul 262
19 The Sacrifice 278
Afterword to the Fifteenth Anniversary Edition 289
Note on Hmong Orthography, Pronunciation, and Quotations 305
Notes on Sources 307
Reading Group Guide
This guide is intended to enrich your experience of reading The Spirit Catches You and You Fall Down, winner of the National Book Critics Circle Award. This moving chronicle of a very sick girl, her refugee parents, and the doctors who struggled desperately to treat her becomes, in Anne Fadiman's deft narrative, at once a cautionary study of the limits of Western medicine and a parable for the modern immigrant experience.
Lia Lee was born in the San Joaquin valley in California to Hmong refugees. At the age of three months, she first showed signs of having what the Hmong know as qaug dab peg (the spirit catches you and you fall down), the condition known in the West as epilepsy. While her highly competent doctors saw the best treatment in a dizzying array of pills, her parents preferred a combination of Western medicine and folk remedies designed to coax her wandering soul back to her body. Over the next four years, profound cultural differences and linguistic miscommunication would exacerbate the rift between Lia's loving parents and her caring and well-intentioned doctors, eventually resulting in the loss of all Lia's higher brain functions. Fadiman weaves this personal tragedy, a probing medical investigation, and a fascinating look at Hmong history and culture into a stunningly insightful, richly rewarding piece of modern reportage.
Questions and Topics for Discussion
The two cultures
1. Do you think the author was evenhanded in her presentation of Hmong culture and medical culture?
2. The book contains many Hmong phrases and many medical phrases, both unfamiliar to most readers. Why do you think the author included them?
3. Over the centuries, the Hmong fought against many different peoples who claimed sovereignty over their lands. What role has this tumultuous history played in the formation of Hmong culture?
4. How does the Hmong folktale about how Shee Yee fought with nine evil dab brothers, told at the end of chapter 12, reflect Hmong culture?
5. What do traditional Hmong consider their most important duties and obligations? What do American doctors consider their most important duties and obligations?
6. In chapter 18, Fadiman writes, "As William Osler once saidor is said to have said‘Ask not what disease the person has, but rather what person the disease has.'" How might the events of this book have unfolded if Osler's dictum were universally followed in the medical profession? How would your relations with your own doctors change?
7. In matters of attitude, what might the average American doctor learn from a Hmong txiv neeb (shaman)? What might the txiv neeb learn from the doctor?
8. In her preface, the author says that while she was working on this book, she often asked herself two questions: "What is a good doctor?" and "What is a good parent?" How do you think she might have answered her own questions? How would you answer them?
9. At the end of chapter 18, Sukey Waller asks, "Which is more important, the life or the soul?" What do you think?
10. The Spirit Catches You and You Fall Down revolves around a small child who for much of the book is too young to speak for herself, and at the end is unable to. Do you nonetheless feel you know Lia Lee? Do you believe that even though she cannot walk or talk, she is a person of value? Why?
11. In chapter 8, after describing Foua's competence as a mother and farmer in Laos, Fadiman quotes her as saying, "I miss having something that really belongs to me." What has Foua lost? Is there anything that still "really belongs" to her?
12. How do you feel about the Lees' reluctance to give Lia her medicine as prescribed? Can you understand their motivation? Do you sympathize with it?
13. In chapter 7, Neil Ernst says, "I felt it was important for these Hmongs to understand that there were certain elements of medicine that we understood better than they did and that there were certain rules they had to follow with their kids' lives." Why didn't this message get through to the Lees? If you were Neil, would you feel this way too?
14. In chapter 15, Foua, who has heard that one of the Ernst sons has leukemia, embraces Peggy. After all the conflict between them, why are they finally able to resolve their differences? Do you think this could have happened earlier?
15. Since the publication of the book, Anne Fadiman has said that if she lived in Merced, she would choose Neil and Peggy as her children's pediatricians. Would you?
16. Fadiman describes May Ying Xiong as not just an interpreter but a cultural broker. What's the difference? What were May Ying's contributions to the book?
17. Were you surprised by the quality of care and affection given to Lia by her foster parents? How did Lia's foster parents feel about Foua and Nao Kao? Was foster care ultimately to Lia's benefit or detriment?
18. The only American who fully won the Lees' trust was Jeanine Hilt, their social worker. Why did Jeanine succeed where so many others had failed?
19. The book contains brief but important sections on three Hmong leadersJonas Vangay, Blia Yao Moua, and Dang Mouawho are multilingual and gainfully employed. What did they teach Fadiman? Why did she include them?
20. How might this book have been different if it had been written by a Hmong? A doctor? An anthropologist?
21. From a writer's point of view, what are the advantages and disadvantages of being an outsider in the two cultures Fadiman explores?
22. "The spirit catches you and you fall down" is a literal translation of the Hmong phrase for epilepsy. Why do you think the author chose such a long and difficult title?
23. The book has an unusual structure: Lia's story occupies the odd-numbered chapters, and background material occupies the even-numbered chapters. Why do you think Fadiman organized her narrative this way?
24. At the beginning of chapter 2, Fadiman tells the story of a Hmong student who gave an oral report on Fish Soup. What is the concept of "fish soup," and how is it reflected in the book itself?
25. One of the ways by which Fadiman places the doctors and the Lee family on equal footing is her decision to refer to all of them by their first names (instead of saying, for instance, "Dr. Ernst"). What are some other ways?
26. Many readers have commented that The Spirit Catches You and You Fall Down is a book without villains. Do you think that from a literary point of view this is a flaw?
Other Books of Related Interest
Virginia Barnes Lee, Aman: Story of a Somali Girl; Michael Bérubé, Life as We Know It; Robert Olen Butler, The Deep Green Sea; Lan Cao, Monkey Bridge; Temple Grandin, Thinking in Pictures: And Other Reports from My Life with Autism; Jamaica Kincaid, My Brother; Maxine Hong Kingston, Woman Warrior; Oliver Sacks, The Man Who Mistook His Wife for a Hat: And Other Clinical Tales; Esmeralda Santiago, When I Was Puerto Rican; Susan Sheehan, Is There No Place on Earth for Me?; Abraham Verghese, My Own Country: A Doctor's Story.