To add injury to insult, some of the doctors’ procedures actually seemed more likely to threaten their patients’ health than to restore it. Most Hmong believe that the body contains a finite amount of blood that it is unable to replenish, so repeated blood sampling, especially from small children, may be fatal. When people are unconscious, their souls are at large, so anesthesia may lead to illness or death. If the body is cut or disfigured, or if it loses any of its parts, it will remain in a condition of perpetual imbalance, and the damaged person not only will become frequently ill but may be physically incomplete during the next incarnation; so surgery is taboo. If people lose their vital organs after death, their souls cannot be reborn into new bodies and may take revenge on living relatives; so autopsies and embalming are also taboo. (Some of the questions on the Ban Vinai soccer field were obviously inspired by reports of the widespread practice of autopsy and embalming in the United States. To make the leap from hearing that doctors removed organs to believing that they ate them was probably no crazier than to assume, as did American doctors, that the Hmong ate human placentas—but it was certainly scarier.)
The only form of medical treatment that was gratefully accepted by at least some of the Hmong in the Thai camps was antibiotic therapy, either oral or by injection. Most Hmong have little fear of needles, perhaps because some of their own healers (not txiv neebs, who never touch their patients) attempt to release fevers and toxicity through acupuncture and other forms of dermal treatment, such as massage; pinching; scraping the skin with coins, spoons, silver jewelry, or pieces of bamboo; applying a heated cup to the skin; or burning the skin with a sheaf of grass or a wad of cotton wool. An antibiotic shot that could heal an infection almost overnight was welcomed. A shot to immunize someone against a disease he did not yet have was something else again. In his book Les naufragés de la liberté, the French physician Jean-Pierre Willem, who worked as a volunteer in the hospital at the Nam Yao camp, related how during a typhoid epidemic, the Hmong refugees refused to be vaccinated until they were told that only those who got shots would receive their usual allotments of rice—whereupon 14,000 people showed up at the hospital, including at least a thousand who came twice in order to get seconds.
When Foua Yang and Nao Kao Lee brought their three sick children to the hospital at Mae Jarim, they were engaging in behavior that many of the other camp inhabitants would have considered positively aberrant. Hospitals were regarded not as places of healing but as charnel houses. They were populated by the spirits of people who had died there, a lonesome and rapacious crew who were eager to swell their own ranks. Catherine Pake, a public health nurse who spent six months working at Phanat Nikhom (a camp where refugees from Laos, Vietnam, and Cambodia came for their final “processing” before they were sent to a country of permanent asylum), concluded from a study of the hospital log that “in comparison to refugees of other ethnic groups, the Hmong have the lowest per capita rate of visits.” (Pake also discovered, not coincidentally, that the Hmong had an extremely “high utilization rate” of indigenous healing arts: shamanism, dermal treatments, herbalism. She published an article in the Journal of Ethnobiology identifying twenty medicinal plants she had collected under the tutelage of Hmong herbalists, which, in various forms-chopped, crushed, dried, shredded, powdered, decocted, infused with hot water, infused with cold water, mixed with ashes, mixed with sulphur, mixed with egg, mixed with chicken—were indicated for burns, fever, weakness, poor vision, broken bones, stomachaches, painful urination, prolapsed uterus, insufficient breast milk, arthritis, anemia, tuberculosis, rabies, scabies, gonorrhea, dysentery, constipation, impotence, and attacks by a dab ntxaug, a spirit who lives in the jungle and causes epidemics when he is disturbed. In this last case, the plant, Jatropha curcas, is crushed and its oil left in a cup, to be consumed not by the patient but by the dab.)
Wendy Walker-Moffat, an educational consultant who spent three years teaching and working on nutritional and agricultural projects in Phanat Nikhom and Ban Vinai, suggests that one reason the Hmong avoided the camp hospitals is that so many of the medical staff members were excessively zealous volunteers from Christian charitable organizations. “They were there to provide medical aid, but they were also there—though not overtly—to convert people,” Walker-Moffat told me. “And part of becoming converted was believing in Western medicine. I’ll never forget one conversation I overheard when I was working in the hospital area at Ban Vinai. A group of doctors and nurses were talking to a Hmong man whom they had converted and ordained as a Protestant minister. They had decided that in order to get the Hmong to come into the hospital they were going to allow a traditional healer, a shaman, to practice there. I knew they all thought shamanism was witch-doctoring. So I heard them tell this Hmong minister that if they let a shaman work in the medical center he could only give out herbs, and not perform any actual work with the spirits. At this point they asked the poor Hmong minister, ‘Now you never go to a shaman, do you?’ He was a Christian convert, he knew you cannot tell a lie, so he said, ‘Well, yes, I do.’ But then their reaction was so shocked that he said, ‘No, no, no, I’ve never been. I’ve just heard that other people go.’ What they didn’t realize was that—to my knowledge, at least—no Hmong is ever fully converted.”
In 1985, the International Rescue Committee assigned Dwight Conquergood, a young ethnographer with a special interest in shamanism and performance art, to design an environmental health program for Ban Vinai. He later wrote:
I heard horror story after horror story from the refugees about people who went to the hospital for treatment, but before being admitted had their spirit-strings cut from their wrists by a nurse because “the strings were unsanitary and carried germs.” Doctors confidently cut off neck-rings that held the life-souls of babies intact. Instead of working in cooperation with the shamans, they did everything to disconfirm them and undermine their authority…. Is it any wonder that the Hmong community regarded the camp hospital as the last choice of available health care options? In the local hierarchy of values, consulting a shaman or herbalist, or purchasing medicine available in the Thai market just outside the entrance to the camp, was much preferred and more prestigious than going to the camp hospital. The refugees told me that only the very poorest people who had no relatives or resources whatsoever would subject themselves to the camp hospital treatment. To say that the camp hospital was underutilized would be an understatement.
Unlike the other camp volunteers, who commuted from an expatriate enclave an hour away, Conquergood insisted on living in Ban Vinai, sharing the corner of a thatched hut with seven chickens and a pig. His first day in the camp, Conquergood noticed a Hmong woman sitting on a bench, singing folk songs. Her face was decorated with little blue moons and golden suns, which he recognized as stickers the camp clinic placed on medication bottles to inform illiterate patients whether the pills should be taken morning or night. The fact that Conquergood considered this a delightful example of creative costume design rather than an act of medical noncompliance suggests some of the reasons why the program he designed turned out to be the most (indeed, possibly the only) completely successful attempt at health care delivery Ban Vinai had ever seen.
Conquergood’s first challenge came after an outbreak of rabies among the camp dogs prompted a mass dog-vaccination campaign by the medical staff, during which the Ban Vinai inhabitants failed to bring in a single dog to be inoculated. Conquergood was asked to come up with a new campaign. He decided on a Rabies Parade, a procession led by three important characters from Hmong folktales—a tiger, a chicken, and a dab—dressed in homemade costumes. The cast, like its audience, was one hundred percent Hmong. As the parade snaked through the camp, the tiger danced and played the qeej, the dab sang and banged a drum, and the chicken (chosen for this crucial role because of its traditional powers of augury) explained the etiology of rabies through a bullhorn. The next morning, the vaccination stations were so besieged by dogs—dogs carried in their owners’ arms
, dogs dragged on rope leashes, dogs rolled in on two-wheeled pushcarts—that the health workers could hardly inoculate them fast enough. Conquergood’s next production, a sanitation campaign in which a parade of children led by Mother Clean (a huge, insanely grinning figure on a bamboo frame) and the Garbage Troll (dressed in ragged clothes plastered with trash) sang songs about latrine use and refuse disposal, was equally well received.
During Conquergood’s five months in Ban Vinai, he himself was successfully treated with Hmong herbs for diarrhea and a gashed toe. When he contracted dengue fever (for which he also sought conventional medical treatment), a txiv neeb informed him that his homesick soul had wandered back to Chicago, and two chickens were sacrificed to expedite its return. Conquergood considered his relationship with the Hmong to be a form of barter, “a productive and mutually invigorating dialog, with neither side dominating or winning out.” In his opinion, the physicians and nurses at Ban Vinai failed to win the cooperation of the camp inhabitants because they considered the relationship one-sided, with the Westerners holding all the knowledge. As long as they persisted in this view, Conquergood believed that what the medical establishment was offering would continue to be rejected, since the Hmong would view it not as a gift but as a form of coercion.
5
Take as Directed
Between the ages of eight months and four and a half years, Lia Lee was admitted to MCMC seventeen times and made more than a hundred outpatient visits to the emergency room and to the pediatric clinic at the Family Practice Center. “Hmong,” read the admission notes. Then, “Hmong well known to this facility.” Then, “Hmong very well known to this facility.” Sometimes instead of “Hmong” the notes say “H’mond” or “Mong” or, in one note transcribed from a tape dictated by a resident, “Mongoloid”—an attempt by a tired typist to make sense of a strange syllable not to be found in any medical dictionary. Under “How Arrived,” the notes always say “Via mo’s arms” under “Initial Diagnostic Impression,” always “seizure disorder of unknown etiology,” and sometimes fever and pneumonia and infections of the middle ear; under “Insurance Coverage,” always Medi-Cal; under amount paid by patient, always zero. Almost all the admission notes contain the phrase “language barrier.” On one assessment form, a nurse’s aide with a Hispanic surname has written, “unable to obtain parient speak no english.” On another form, in the space marked “Communication Problems,” another nurse has summed up the situation with a single word: “Hmong.”
Foua and Nao Kao always knew exactly when a seizure was coming, because Lia knew. The aura, a sense of premonition common to epileptics and sufferers of migraine and angina, can take many forms, from mildly peculiar sensations—sudden tastes or smells, tingling, flushing, déjà vu, jamais vu (the feeling that an experience is utterly unfamiliar)—to mortal terror. Physicians in the eighteenth century called the frightening auras angor animi, “soul anguish,” a concept any Hmong might recognize. Before Lia fell, she would run to her parents to be hugged. She also demanded plenty of hugs from them when she was feeling fine, but they recognized these occasions as different because she had a strange, scared expression, and they would gently pick her up and lay her on the mattress they kept for this purpose on the floor of their living room (which was otherwise unfurnished). Sometimes there was twitching on one side of her body, usually the right. Sometimes she had staring spells. Sometimes she seemed to hallucinate, rapidly scanning the air and reaching for invisible objects. As Lia got older, the abnormal electrical activity spread to larger and larger areas of her brain and triggered more frequent grand mal episodes. As she lay face up, her back would arch so violently that only her heels and the back of her head would touch the mattress, and then, after a minute or so of rigid muscle contractions, her arms and legs would start to thrash. During the first phase, her respiratory muscles contracted along with the rest of her body, and she would often stop breathing. Her lips and nail beds turned blue. Sometimes she gave high-pitched gasps, foamed at the mouth, vomited, urinated, or defecated. Sometimes she had several seizures in a row; between them, she would tense, point her toes, and cry a strange deep cry.
In the most serious episodes, Lia would continue seizing and seizing without regaining consciousness. This condition, called “status epilepticus” when it lasts for twenty minutes or longer, is what the doctors in the MCMC emergency room feared most. Lia usually remained in “status” until massive doses of anticonvulsant medication could be administered intravenously. Inserting a needle into the vein of a baby who is having convulsions is like shooting, or trying to shoot, a very small moving target. While the hapless young resident who happened to be on call maneuvered the needle, he or she was always acutely aware that as each second ticked away during the phases of respiratory arrest, Lia’s brain was being deprived of oxygen. When I asked one nurse whether this caused brain damage, he said, “If you want to know what a five-minute seizure is like, go stick your head in a bucket of water for five minutes and take some deep breaths.” Over the course of several years, Lia was treated at least once, and sometimes many times, by each of MCMC’s residents. Frightening as it was to be on duty when Lia was brought in at 3:00 a.m., there was probably no other group of family practice residents in the United States who by the end of their three-year program were so familiar with the management of pediatric grand mal seizures.
The residents were merely the first line of defense. Every time Lia came to the emergency room, either Neil Ernst or Peggy Philp, the two supervising pediatricians who served on the faculty of the family practice residency program, was paged and, no matter how late it was, drove to the hospital (a trip that could be accomplished, at just under the speed limit, in seven minutes). Peggy Philp was the physician Dan Murphy consulted during Lia’s first admission to MCMC. The note she wrote six days after Lia’s discharge read, in part:
This is a very interesting young infant who presents with a history of right focal seizures. One leading to a grand mal seizure. I feel that probably the grand mal seizure caused an aspiration pneumonia and hence apnea, causing her extreme distress when she showed up in the Emergency Room on the day of admission. The child has apparently done well on her Dilantin, although she has continued to have some right focal seizures…. My feeling is that this child probably has some form of benign focal seizures of infancy. These are not especially common, but can often be quite benign in nature. Since there is apparently some chance that these will generalize, it is probably worth while to keep the child on Dilantin therapy to suppress a grand mal seizure. I would check the Dilantin level to make sure that it remains therapeutic…. I think that the prognosis for this child’s intellectual development remains good.
Looking back on this optimistic document several years later, Peggy explained, “Most epileptics are controlled relatively easily by seizure medications. Lia’s disorder turned out to be much more severe than what you usually see in classic epilepsy.” Lia’s chart eventually grew to five volumes, longer than the chart of any other child who has ever been admitted to MCMC, and weighed thirteen pounds eleven ounces, considerably more than Lia weighed when she was born there. Neil and Peggy once went through a photocopy of it with me. Over a period of several evenings, the two doctors worked with the same briskness and efficiency they would have brought to a patient’s diagnostic examination, arranging the thousands of pages in neat stacks, rapidly discarding any they deemed irrelevant, never skipping over—in fact, often specifically pointing out—details that failed to put them in the best possible light, and stopping every once in a while to laugh ruefully at the chart’s many errors. (The errors were invariably made by transcribers, nurses, or other physicians; their own contributions were flawless and usually even legible.) “‘She was seen to have lice coming out of her nose.’ Lice. That can’t be right. Ice? Mice? Rice! Shoot, that’s what it is, rice!” Sometimes Neil would stop and stare at a page, often one that seemed anesthetically dull to me, and shake his head and sigh and say, “Oh God, Lia.”
When we looked through the records of Lia’s first visits to the emergency room, he started to flip the pages back and forth with angry little slapping motions. He had forgotten that she had had epileptic seizures for five months before they were diagnosed and medicated, and was wondering in retrospect whether the course of her life might have been different if his hospital had offered her optimal medical care from the beginning.
Neil Ernst and Peggy Philp are married to each other. They alternate call nights, and each prayed that when a Lia Lee call came, it would be the other one’s turn to roll out of bed. Neil and Peggy are both the children of physicians, both high school valedictorians, both Phi Beta Kappa graduates of Berkeley. They met when they were nineteen and eighteen, two tall, good-looking, athletic premed students who recognized in each other the combination of idealism and workaholism that had simultaneously contributed to their successes and set them apart from most of their peers. By the time their lives intersected with Lia’s, they shared a practice and a half, as well as an office, a beeper, and a byline on the articles they had published in medical journals. Neil’s curriculum vitae, which was flush with academic and professional honors, was the only one I have ever seen that noted Marital Status and Children first. Their schedules were arranged in such a way that one of them was always home in the afternoon when their two sons got out of school. Every morning, the alarm buzzed at 5:45. If it was Monday, Wednesday, or Friday, Neil got up and ran eight miles. If it was Tuesday, Thursday, or Sunday, Peggy got up and ran eight miles. They alternated Saturdays. Their runs were the only time either of them was entirely alone for more than a few minutes, and they never skipped or traded a morning, even if they had been up most of the night on call at MCMC. “I am a fairly driven and compulsive kind of person,” Neil told me one night in the living room of their extremely neat ranch-style house, the care of which was evenly split between them. Peggy was on call at the hospital. “Peggy is very similar to me. We get along real well. Real, real well. Medically, we complement each other. My strengths are infections, asthma, and allergies. Peggy is strong in hematology and she’s better than I am in child development. When you’re confronted with a difficult decision, it’s nice to talk to someone whose judgment you respect. Am I thinking okay? Would you offer anything else? Can I do anything else? If I feel like a dumbshit I can be a dumbshit with her. We don’t have to impress each other. If she was not in my life it would…well, take a while for me to be able to function.”