Full Summaries Sorted

The Spirit Catches You and You Fall Down (Chapters 6-9)

Author: Anne Fadiman

6 / High-Velocity Transcortical Lead Therapy

It was said in the refugee camps in Thailand that the Hmong in America could not find work, were forbidden to practice their religion, and were robbed and beaten by gangs. It was also said that Hmong women were forced into slavery, forced to have sex with American men, and forced to have sex with animals. Dinosaurs lived in America, as well as ghosts, ogres, and giants. With all this to worry about, why did the 15,000 Hmong who gathered on the Ban Vinai soccer field to voice their deepest fears about life in the United States choose to fixate on doctors?

A year after I first read the account of that gathering, as I was attempting to deal out a teetering pile of notes, clippings, and photocopied pages from books and dissertations into several drawerfuls of file folders, I had a glimmering of insight. There were hundreds of pages whose proper home I was at a loss to determine. Should they go in the Medicine folder? The Mental Health folder? The Animism folder? The Shamanism folder? The Social Structure folder? The Body/Mind/Soul Continuum folder? I hovered uncertainly, pages in hand, and realized that I was suspended in a large bowl of Fish Soup. Medicine was religion. Religion was society. Society was medicine. Even economics were mixed up in there somewhere (you had to have or borrow enough money to buy a pig, or even a cow, in case someone got sick and a sacrifice was required), and so was music (if you didn’t have a qeej player at your funeral, your soul wouldn’t be guided on its posthumous travels, and it couldn’t be reborn, and it might make your relatives sick) In fact, the Hmong view of health care seemed to me to be precisely the opposite of the prevailing American one, in which the practice of medicine has fissioned into smaller and smaller sub-specialties, with less and less truck between bailiwicks. The Hmong carried holism to its ultima Thule. As my web of cross-references grew more and more thickly interlaced, I concluded that the Hmong preoccupation with medical issues was nothing less than a preoccupation with life. (And death. And life after death.)

Not realizing that when a man named Xiong or Lee or Moua walked into the Family Practice Center with a stomachache he was actually complaining that the entire universe was out of balance, the young doctors of Merced frequently failed to satisfy their Hmong patients. How could they succeed? They could hardly be expected, as Dwight Conquergood had done at Ban Vinai, to launch a parade of tigers and dabs through the corridors of MCMC. They could hardly be expected to “respect” their patients’ system of health beliefs (if indeed they ever had the time and the interpreters to find out what it was), since the medical schools they had attended had never informed them that diseases are caused by fugitive souls and cured by jugulated chickens. All of them had spent hundreds of hours dissecting cadavers, and could distinguish at a glance between the ligament of Hessel-bach and the ligament of Treitz, but none of them had had a single hour of instruction in cross-cultural medicine. To most of them, the Hmong taboos against blood tests, spinal taps, surgery, anesthesia, and autopsies—the basic tools of modern medicine—seemed like self-defeating ignorance. They had no way of knowing that a Hmong might regard these taboos as the sacred guardians of his identity, indeed, quite literally, of his very soul. What the doctors viewed as clinical efficiency the Hmong viewed as frosty arrogance. And no matter what the doctors did, even if it never trespassed on taboo territory, the Hmong, freighted as they were with negative expectations accumulated before they came to America, inevitably interpreted it in the worst possible light.

Whenever I talked to Hmong people in Merced, I asked them what they thought of the medical care they and their friends had received.

“The doctor at MCMC are young and new. They do what they want to do. Doctor want to look inside the woman body. The woman very pain, very hurt, but the doctor just want to practice on her.”

“One lady, she is cry, cry, cry. She do not want doctor to see her body. But this country there is the rule. If you want to stay here you must let doctor examine the body.”

“Most old people prefer not to go to doctor. They feel, maybe doctor just want to study me, not help my problems. They scary this. If they go one time, if they not follow appointment and do like doctor want, doctor get mad. Doctor is like earth and sky. He think, you are refugee, you know nothing.”

“It took us an hour to see the doctor. Other people who are rich, they treat them really well and they do not wait.”

“This lady she had some blisters inside the mouth and the doctor he say, you need surgical treatment. She say, no, I just need medication for pain only. And he say, I know more than you do. He completely ignore what she ask.”

“My half brother his body was swollen and itchy, and the doctors say, hey, you got a cancer and we need to operate. He agreed to sign the operation but then he didn’t want to do it. But he say to me, I already sign everything and the doctor going to send me to jail if I change my mind.”

“Hmong should never sign anything at MCMC. The student doctors just want to experiment on the poor people and they kill the poor people.”

“The doctor is very busy. He takes people that are sick, he produces people that are healthy. If he do not produce, his economic will be deficit. But the Hmong, he will want the doctor to calmly explain and comfort him. That does not happen. I do not blame the doctor. It is the system in America.”

All of the people quoted here speak English, and thus belong to the most educated and most Americanized segment of Hmong society in Merced—the segment most likely to understand and value Western medical care. Nonetheless, their version of reality fails to match that of their doctors pretty much across the board. From the doctors’ point of view, the facts are as follows: MCMC is indeed a teaching hospital, but this works to its patients’ advantage, since it has attracted skilled faculty members who must constantly update their knowledge and techniques.

The young residents are all M.D.s, not students. The Hmong spend a long time in the waiting area, but so does everyone else. Patients who change their minds about surgery do not go to jail. The doctors do not experiment on their patients. Neither do they kill them, though their patients do sometimes die, and are more likely to do so if, like the Hmong, they view the hospital as a dreaded last resort to be hazarded only when all else fails.

Although the doctors at MCMC are not aware of most of the Hmong’s specific criticisms—they would be unlikely to ask, and the Hmong would be unlikely to answer—they certainly know the Hmong do not like them, and that rankles. The residents may be exhausted (since their shifts are up to twenty-four hours long, and until recent years were up to thirty-three hours long); they may be rushed (since many clinic appointments are only fifteen minutes long); but they are not—and they know they are not —greedy or spiteful. Most of them have chosen the field of family practice, which is the lowest-paying of all medical specialties, for altruistic reasons. “Of course, some of the subspecialists would say we went into family medicine because we weren’t smart enough to be urologists or ophthalmologists,” Bill Selvidge, MCMC’s former chief resident, told me. “If we were urologists, we’d be making a lot more money and we wouldn’t have to get up so often in the middle of the night.”

Bill is an old college friend of mine. It was he who first told me about the Hmong of Merced, whom he described as being such challenging patients that some of his fellow doctors suggested the preferred method of treatment for them was high-velocity transcortical lead therapy. (When I asked Bill what that meant, he explained, “The patient should be shot in the head.” ) Bill himself did not seem to find the Hmong quite as exasperating as some of his colleagues did, perhaps because of the lessons in cultural relativism he had learned during the two years he had spent with the Peace Corps in Micronesia, and perhaps because, as he pointed out to me, the Hmong acted no stranger than his next-door neighbors in Merced, a family of white fundamentalist Christians who had smashed their television set and then danced a jig around it. (The neighbors’ children had then offered to smash Bill’s set as well. He had politely declined.) Bill was the sort of person I’d always wanted to have as a doctor myself, and before I came to Merced, I found it hard to believe that his Hmong patients weren’t prostrate with gratitude.

When refugees from Laos started settling in Merced County in the early 1980s, none of the doctors at MCMC had ever heard the word “Hmong,” and they had no idea what to make of their new patients. They wore strange clothes—often children’s clothes, which were approximately the right size—acquired at the local Goodwill. When they undressed for an examination, the women were sometimes wearing Jockey shorts and the men were sometimes wearing bikini underpants with little pink butterflies. They wore amulets around their necks and cotton strings around their wrists (the sicker the patient, the more numerous the strings). They smelled of camphor, mentholatum, Tiger Balm, and herbs. When they were admitted to the hospital, they brought their own food and medicines. The parents of one of Neil Ernst’s patients, a small boy with a gastrointestinal disorder, once emptied his intravenous bottle and replaced its contents with what Neil described as green slime, an herbal home brew whose ingredients the doctors never determined.

Hmong patients made a lot of noise. Sometimes they wanted to slaughter live animals in the hospital. Tom Sult, a former MCMC resident, recalled, “They’d bang the crap out of some kind of musical instrument, and the American patients would complain. Finally we had to talk to them. No gongs. And no dead chickens.”

Neil Ernst and Peggy Philp were shocked to discover quarter-sized round lesions, some reddish and some hypopigmented, on the abdomens and arms of some of their pediatric patients. They looked like burns. Some of the lesions had healed and others were still crusty, suggesting that the skin had been traumatized on more than one occasion. Neil and Peggy immediately called the Child Protective Services office to report that they had identified several cases of child abuse. Before the cases were prosecuted, they learned from a San Francisco doctor that the lesions were the result of dermal treatments—rubbing the skin with coins or igniting alcohol-soaked cotton under a tiny cup to create a vacuum— that were common among several Asian ethnic groups, and that they were a “traditional healing art,” not a form of abuse. (I once attended a conference on Southeast Asian health care issues at which a prominent doctor showed some slides of coin-rubbing lesions and told the audience, “It doesn’t hurt.” The young Lao woman sitting next to me whispered, “Yes it does.” ) Dan Murphy remembers that when he was a resident, he heard a story about a Hmong father in Fresno who was sent to jail after black marks were discovered on his child’s chest by an elementary school teacher. The father hanged himself in his cell. The story is probably apocryphal (though it is still in wide circulation), but Dan and the other doctors believed it, and they were shaken to realize how high the stakes could be if they made a tactical error in dealing with the Hmong.

And there were so many ways to err! When doctors conferred with a Hmong family, it was tempting to address the reassuringly Americanized teenaged girl who wore lipstick and spoke English rather than the old man who squatted silently in the corner. Yet failing to work within the traditional Hmong hierarchy, in which males ranked higher than females and old people higher than young ones, not only insulted the entire family but also yielded confused results, since the crucial questions had not been directed toward those who had the power to make the decisions. Doctors could also appear disrespectful if they tried to maintain friendly eye contact (which was considered invasive), touched the head of an adult without permission (grossly insulting), or beckoned with a crooked finger (appropriate only for animals). And doctors could lose the respect of their patients if they didn’t act like authority figures. The young residents at MCMC did not enhance their status by their propensities for introducing themselves by their first names, wearing blue jeans under their white coats, carrying their medical charts in little backpacks, and drinking their coffee from Tommee Tippee cups. Doctors could get into trouble if they failed to take the Hmong’s religious beliefs into account. For example, it was important never to compliment a baby’s beauty out loud, lest a dab overhear and be unable to resist snatching its soul. Similarly, when a seventeen-year-old Hmong patient once asked if her failure to get pregnant might be attributable to the dab who frequently visited her in her dreams, sometimes sitting on the edge of her bed and sometimes having sexual intercourse with her, it was fortunate that the resident on duty in OB-GYN Clinic listened with calm attention instead of diagnosing an acute psychosis and dispatching her to a locked ward. On the other hand, bending over backwards to be culturally sensitive did not always work. Bill Selvidge once examined a depressed middle-aged Hmong woman with severe headaches. Surmising that some of her problems stemmed from cultural dislocation and that her spirits might be buoyed by traditional treatment, he recommended that she see a txiv neeb. However, as he reported in his clinic note, “She is reluctant to go to a shaman, partly because she is now Catholic and partly because it takes too many chickens and/or pig that have to be killed in her home for her to satisfy shamans and traditional healers. She may have tried this in the past because she indicates a previous landlord told her to leave home after police were called when some members of her family were just about to sacrifice a pig.” Disappointed, Bill prescribed aspirin.

Compared to the other patients that frequented Merced Community Medical Center, the Hmong were not only trickier but sicker. They had a high incidence of high blood pressure, anemia, diabetes, hepatitis B, tuberculosis, intestinal parasites, respiratory infections, and tooth decay. Some of them had injuries or illnesses they had acquired during the war in Laos or its aftermath: gunshot wounds, chronic shoulder pain from carrying M-16 rifles, deafness from exploding artillery shells. “And how long have you had these headaches?” asked one bored doctor. His Hmong patient replied matter-of-factly, “Ever since I got shot in the head.” Another doctor, wondering if a Hmong patient’s unusual neuropathies might have been caused by nutritional deficiencies, learned that while fleeing to Thailand the man had spent several months living in the jungle, subsisting largely on insects.

Before receiving clearance to be admitted to the United States, all Hmong, like other refugees, undergo medical screenings by physicians employed by the International Organization for Migration. The physicians must sign forms indicating that they have specifically examined the visa applicants for, and found them free of, eight contagious diseases (leprosy, tuberculosis, five venereal diseases, and, since 1987, positive antibodies for HIV) and eight mental conditions, including “Sexual Deviation,” “Psychopathic Personality,” and “Previous Occurrence of One or More Attacks of Insanity.” Paul DeLay, the former director of the Refugee Clinic at San Francisco General Hospital, explained to me, “You get the impression that these problems are being carefully screened for back in Thailand. In fact, the exam takes approximately ten seconds. All you get is a blood test for syphilis and HIV, a quick skin check for leprosy, and a chest X ray for TB. Early on, you could buy a clear X ray on the black market. In ’81 it got a little harder because the immigration officials started stapling a photo of the person to the X ray, but it was still possible. And despite what it says on the form, there’s absolutely no screening for ‘mental conditions.’ In the early days, some medical person would walk down the aisle of the airplane and if somebody looked psychotic they’d be thrown off. So if a family was worried about their crazy relative they’d just load him up with opium so he’d fall asleep.” DeLay pointed out that although few refugees are rejected for medical reasons, it is a terrible crisis for the ill person’s family when this does happen, especially because once an applicant is “medically excluded” by one potential country of asylum, he is unlikely to be accepted anywhere else. “All of this means that the refugees have one more reason to be afraid of doctors,” said DeLay.

Once a refugee arrives in the United States, post-immigration screening is not legally required, so although most states have refugee health programs, many Hmong choose not to be screened and thus encounter the medical system for the first time during an emergency. In Merced, new arrivals are voluntarily processed through the county’s public health department, which checks primarily for tuberculosis and intestinal parasites. Though funding is too meager to allow more than a cursory examination during which the patient undresses only from the waist up, refugees who are pregnant or have glaringly evident medical problems are referred to the hospital or clinic.

Merced’s health department is also responsible, according to its former director, Richard Welch, for “dealing with the problems no one else in the community wants to get their hands dirty dealing with.” For example, when a rumor circulated in Merced that a Hmong family was raising rats to eat, a public health worker paid a call. “One of the children in the family had diarrhea, so the question was, did the rats have salmonella or shigella?” recalled Karen Olmos, a nurse in the health department’s communicable disease program. “I told the worker, For God’s sake, don’t just barge in and tell them you want to see the rats! So she went over there on some other pretext, and there were the rat cages. She could see the rats were from the pet store, not the gutter—they were big whoppers. Instead of making the family feel bad about the rats, she simply suggested that they raise rabbits instead. Low start-up cost, high yield, high protein.” On another occasion, the health department launched an investigation after sixty Hmong with diarrhea arrived at the MCMC emergency room. It turned out that for a major feast on a hot summer day, a pig infected with salmonella had been butchered, ripened in the sun for six hours, and served in various forms, including ground raw pork mixed with raw blood.

Although by the mid-eighties the regular staffs of the health department and the hospital had become inured, if not resigned, to dealing with the Hmong, each year brought a fresh crop of family practice residents who had to start from scratch. Avid for exotic medical experiences and hoping that, with its large refugee population, Merced might be sort of like the Peace Corps (but with good hamburgers), these new arrivals were deeply disappointed to find that their Hmong patients spent most of the time staring at the floor and speaking in monosyllables, of which the most frequent was “yes.” After a while, they began to realize that “yes” simply meant that the patients were politely listening, not that they agreed with or even had any idea what the doctor was talking about. It was typically Hmong for patients to appear passively obedient—thus protecting their own dignity by concealing their ignorance and their doctor’s dignity by acting deferential—and then, as soon as they left the hospital, to ignore everything to which they had supposedly assented.

When no interpreter was present, the doctor and the patient stumbled around together in a dense fog of misunderstanding whose hazards only increased if the patient spoke a little English, enough to lull the doctor into mistakenly believing some useful information had been transferred. When an interpreter was present, the duration of every diagnostic interview automatically doubled. (Or tripled. Or centupled. Because most medical terms had no Hmong equivalents, laborious paraphrases were often necessary. In a recently published Hmong-English medical glossary, the recommended Hmong translation for “parasite” is twentyfour words long; for “hormone,” thirty-one words; and for “X chromosome,” forty-six words.) The prospect of those tortoise-paced interviews struck fear into the heart of every chronically harried resident. And even on the rare occasions when there was a perfect verbatim translation, there was no guarantee that either side actually understood the other. According to Dave Schneider, who served his residency in Merced in the late eighties, “The language barrier was the most obvious problem, but not the most important. The biggest problem was the cultural barrier. There is a tremendous difference between dealing with the Hmong and dealing with anyone else. An infinite difference.” Dan Murphy said, “The Hmong simply didn’t have the same concepts that I did. For instance, you can’t tell them that somebody is diabetic because their pancreas doesn’t work. They don’t have a word for pancreas. They don’t have an idea for pancreas. Most of them had no concept that the organs they saw in animals were the same as in humans, because they didn’t open people up when they died, they buried them intact. They knew there was a heart, because they could feel the heartbeat, but beyond that—well, even lungs were kind of a difficult thing to get into. How would you intuit the existence of lungs if you had never seen them?”

Hmong patients might not understand the doctors’ diagnoses, but if they had summoned the courage to visit the clinic, they wanted to be told that something was wrong and to be given something, preferably a fastacting antibiotic, to fix it. The doctors had a hard time meeting these expectations when the Hmong complained, as they frequently did, of vague, chronic pain. “I have a particular series of diagnostic questions I usually ask when a patient complains of pain,” said Dave Schneider. “I ask what makes it better and what makes it worse? Is it sharp? Dull? Piercing? Tearing? Stinging? Aching? Does it radiate from one place to another? Can you rate its severity on a scale from one to ten? Is it sudden? Is it intermittent? When did it start? How long does it last? I would try to get an interpreter to ask a Hmong patient these questions, and the interpreter would shrug and say, ‘He just says it hurts.’”

It has been well known since the aftermath of the Second World War that because of the enormous psychological traumas they have suffered, refugees of all nationalities have an unusually high incidence of somatization, in which emotional problems express themselves as physical problems. After dozens of gastrointestinal series, electromyograms, blood tests, and CT scans, the Merced doctors began to realize that many Hmong complaints had no organic basis, though the pain was perfectly real. Because so little could be done for them and because they were so depressing to be around, Hmong with “total body pain” were among the clinic’s least popular patients. I once heard a resident try to persuade a physician’s assistant to take over one of his cases. “No, Steve,” said the assistant. “No, I do not want to see an elderly Hmong woman with multiple complaints and depression. I will take your coughs and your back problems, but don’t give me one of those!” In order to show they were taking the complaints seriously, some doctors prescribed what they called “the Hmong cocktail”—Motrin (an anti-inflammatory), Elavil (an antidepressant), and vitamin B12. But the patients did not usually get better. “For the underlying problems,” explained Bill Selvidge, “there was no treatment that it was in my power to offer.”

If Hmong patients left the Family Practice Clinic without a prescription (for example, if they had a cold or flu), they sometimes felt cheated and wondered if they were being discriminated against. But if they were given a prescription, no one knew if it would be followed. “You’d say, take a tablespoon of that,” said Mari Mockus, a nurse at the clinic. “They’d say, ‘What’s a tablespoon?’” One patient refused to swallow a pill because it was an inauspicious color. Long-term therapy— for example, the doses of isoniazid that must be taken every day for a year to treat tuberculosis—was always problematic, especially if the illness was asymptomatic. Whatever the prescription, the instructions on pill bottles were interpreted not as orders but as malleable suggestions. Afraid that medicines designed for large Americans were too strong for them, some Hmong cut the dosage in half; others double-dosed so they would get well faster. It was always frightening for the doctors to prescribe potentially dangerous medications, lest they be misused. In one notorious case, the parents of a large Hmong family en route from Thailand to Hawaii were given a bottle of motion sickness pills before they boarded the plane. They unintentionally overdosed all their children. The older ones merely slept, but by the time the plane landed, the infant was dead. The medical examiner elected to withhold the cause of death from the parents, fearing they would be saddled with an impossible burden of guilt if they learned the truth.

When a Hmong patient required hospitalization, MCMC nurses administered the medications, and the doctors could stop wondering whether the dose was going to be too high or too low. There was plenty else to worry about. When they walked into a hospital room, they often had to run a gantlet of a dozen or more relatives. Decisions—especially about procedures, such as surgery, that violated Hmong taboos—often took hours. Wives had to ask their husbands, husbands had to ask their elder brothers, elder brothers had to ask their clan leaders, and sometimes the clan leaders had to telephone even more important leaders in other states. In emergency situations, the doctors sometimes feared their patients would die before permission could be obtained for life-saving procedures. All too often, permission was refused. “They won’t do something just because somebody more powerful says do it,” said Dan Murphy. “They will sit back and watch and sort of mentally chew it over, and then they may or may not do it. That attitude has been very culturally adaptive for the Hmong for thousands of years, and I think that it is still culturally adaptive, but when it hit the medical community, it was awful.”

Teresa Callahan once saw a patient in the emergency room who had an ectopic pregnancy that required the immediate removal of a Fallopian tube. “I told her over and over again that if the tube ruptured at home she might die before she could get to the hospital. I called her husband and her mother and her father and her grandparents, and they all said nope.

All that mattered to them was that she would have one less tube and she might not be able to have kids after that, and when they heard that, it was no, no, no, no. She’d rather die. I had to watch her walk out the door knowing she had something that could kill her.” (Several days later, the woman consented to the surgery after consulting a Thai doctor in Fresno.

Teresa does not know how he persuaded her.) Another Hmong woman, examined shortly before she went into labor, was told that because her baby was in a breech position, a cesarean section was indicated. Although breech births in Laos often meant death to both mother and child, the woman attempted to give birth at home rather than submit to the surgery. The attempt failed. Dave Schneider was on call when an ambulance brought her to the hospital. “I got paged at 3:00 or 4:00 a.m.,” he recalled. “‘Dr. Schneider, stat to the emergency room, there’s a lady coming in with a breech baby that won’t come out.’ The paramedics came in wheeling this Hmong woman on a gurney. She was making no noise, just moving her head around in panic. There was a blanket partly over her. I have a very clear visual memory of lifting the covers to reveal a pair of little blue legs, not moving, hanging out of her vagina.” Dave delivered the baby vaginally by manually stretching the cervix over its head. The mother recovered, but the baby died of oxygen deprivation.

Most Hmong women did go to the hospital to give birth, erroneously believing that babies born at home would not become U.S. citizens. Doctors were more likely to encounter them on the Labor and Delivery floor than in any other medical context because they had so many children. In the mid-eighties, the fertility rate of Hmong women in America was 9.5 children, which, according to one study, was “at the upper limits of human reproductive capacity,” second only to the Hutterites. (The fertility rate of white Americans is 1.9 children, and of black Americans, 2.2.) This rate has undoubtedly decreased—though it has not been recently quantified—as young Hmong have become more Americanized, but it is still extraordinarily high. The large size of Hmong families is the inevitable result of two circumstances: Hmong women usually marry during their teens, sometimes as early as thirteen or fourteen, thus allowing their reproductive years to extend nearly from menarche to menopause; and, as a rule, they are highly suspicious of contraception. In 1987, when Donald Ranard, a researcher on refugee issues at the Center for Applied Linguistics in Washington, D.C., visited Ban Vinai, he learned that in an effort to curb the exploding birthrate of the camp’s inhabitants, the administrators had promised free cassette recorders to women who volunteered to take contraceptive pills. Many women accepted both the tape recorders and the pills, but they soon discovered a marvelous paradox: the contraceptives, which they had probably never intended to swallow in the first place, were a superior fertilizer. So the pills ended up being ground up and sprinkled on Hmong vegetable plots, while the gardeners continued to get pregnant.

The Hmong have many reasons for prizing fecundity. The most important is that they love children. In addition, they traditionally value large families because many children were needed to till the fields in Laos and to perform certain religious rites, especially funerals; because the childhood mortality rate in Laos was so high; because so many Hmong died during the war and its aftermath; and because many Hmong still hope that their people will someday return to Laos and defeat the communist regime. In the refugee camps, Hmong newborns were often referred to as “soldiers” and “nurses.” The frequent appearance at MCMC of Hmong women on the Merced public assistance rolls who were about to give birth to their eighth, tenth, or fourteenth child did not endear them to those staff members who have strong ideas about family planning. “I am totally disgusted by the breeding rate,” said Robert Small, an obstetrician who is well known for his clinical proficiency, his unapologetic contempt for the Hmong, and his propensity for mixed metaphors. “The Hmong breed like flies as if the golden goose of welfare will continue to lay eggs forever.”

According to Dr. Small, the Hmong are highly uncooperative obstetrical patients. “They don’t do a damn thing you tell them,” he said. “They just come in late and drop it out. In fact, they wouldn’t come at all if they didn’t need to get the birth certificate so they could get more welfare. You or I, we can’t conceive of the degree of ignorance. They’re almost a Stone Age people. Hell, they never went to a doctor before. They just had a baby in the camp or the mountains or wherever the hell they came from.” Because they were approximately as fond of most doctors as Robert Small was of them, Hmong women who arrived in Merced in the refugee influx of the early and mid-eighties tended to avoid prenatal care.* They were particularly frightened of pelvic exams performed by male doctors. (In the Hmong healing system, txiv neebs and herbalists, who do not touch their patients, may treat people of the opposite sex, but in the more intimate sphere of dermal therapy—massage, acupuncture, pinching, coin rubbing—men usually treat men, and women women.) Once they were in labor, the women preferred to wait until the last minute to arrive at the hospital. They often gave birth in the parking lot, the emergency room, or the elevator. Wheelchairs at MCMC were called “Hmong birthing chairs” because so many Hmong babies were born in them en route to the Labor and Delivery floor.

Even if they got to the hospital on time, the women made so little noise during labor that the hospital staff, not realizing birth was imminent, often failed to transfer them from labor beds to delivery tables. A few doctors found this forbearance admirable. “We were told in medical school that childbearing is one of the three or four most painful things that can happen to a person,” said Dave Schneider. “Most women scream. Hmong women don’t make any sound at all. They are just remarkably, unbelievably stoic.”

The obstetric nurses were less impressed by the silence of their Hmong patients. Dan Murphy explained, “The nurses’ attitude was more, ‘Why didn’t they tell us they were about to deliver? What are they, stupid?’ I think it was kind of a displaced anxiety. I don’t think that they were angry at the Hmong so much as they were anxious because the Hmong didn’t fit the pattern they had been trained to deal with.” Some other ways in which Hmong women failed to fit the pattern included squatting during delivery and refusing permission for episiotomy incisions to enlarge the vaginal opening. Although Lia’s mother, when she lived in Laos, had preferred to go through labor alone, many Hmong women were used to being held from behind by their husbands, who massaged their bellies with saliva and hummed loudly just before the baby emerged. The husbands made it very clear what they expected from the doctors. “One father slapped my hand when I was controlling the progress of the baby’s head,” recalled Kris Hartwig. “The nurses got very upset because he violated the sterile field. Then, as I was clamping the umbilical cord, he reached down and touched the cord and said, ‘This is how long it has to be.’”

Because neither of the father’s demands endangered the health of the mother or the child, Kris Hartwig complied. But what if a patient (or her husband or father or brother, who was more likely to make the decision) refused an episiotomy that her doctors believed would prevent an imminent fourth-degree laceration—a laceration that the husband or father or brother might then forbid the doctor to stitch up? Or, worse still, what if the fetal monitor indicated that the baby’s heartbeat had dangerously decelerated, and the family refused to sign a consent form for an emergency cesarean section?

I asked Raquel Arias—by common consent, the MCMC obstetrician with the most dazzling combination of skill and empathy—what she did when the wishes of her Hmong patients conflicted with the standard of medical care she was accustomed to providing. “I have the same standard of care for the Hmong as I have for everyone else,” she said. “My hands are just tied to provide it. So I give them suboptimal care. Sometimes you can find middle ground and try to understand where they are coming from, which is hard, but not impossible. Sometimes you can persuade them to do what you want. You keep telling them stuff and if you want it bad enough then maybe it’ll work. It is when the well-being of the fetus is in jeopardy—a fetus that in our perspective is a full person who should have the rights and privileges that all citizens of this country have—and the beliefs and customs of the family seem to be going against what you believe is in the fetus’s best interest, that you have the worst conflict.

When that happens, it is an unbelievably terrible situation to be in. It is awful. It is not the kind of tension you feel when you get mad at someone from your own background who is doing something they know is bad, like smoking or drinking while they are pregnant. This is a different kind of tension because they don’t know that they are doing something bad. According to their beliefs and principles, they are trying to protect the mother and the baby and their way of life. And what you think is necessary happens to be exactly the opposite of what they think is appropriate.”

Listening to Raquel, I was struck, as I often was, by the staggering toll of stress that the Hmong exacted from the people who took care of them, particularly the ones who were young, idealistic, and meticulous. During Hmong labors that were going badly, Raquel bit her fingernails (which were impeccably polished with Purple Passion enamel) to the quick. Sukey Waller, a psychologist at Merced Community Outreach Services who was highly regarded in local Hmong circles, went through a period of throwing up before going to work each morning. Benny Douglas, a resident who was known for his imperturbable calm, was so upset by one problematic case (an elderly Hmong woman had gastric cancer, and Benny hadn’t been able to persuade her sons to consent to her surgery) that he developed severe insomnia. I remember seeing Benny slumped forlornly in a chair, alone in the residents’ call room at dusk, dictating his notes about Mrs. Thao into a little tape recorder while he drank cup after Tommee Tippee cup of coffee and reflexively picked at his eyelashes. When I asked Dan Murphy why he thought caring for the Hmong caused so much stress, he said, “People in the early years of their medical careers have invested an incredible amount of time and energy and pain in their training, and they have been taught that what they’ve learned in medical school is the only legitimate way to approach health problems. I think that is why some young doctors go through the roof when Hmong patients reject what we have to offer them, because it intimates that what Western medicine has to offer is not much.”

The only doctor I met in Merced who seemed untroubled either by his encounters with the Hmong, or by the question of whether he was providing optimal care, was Roger Fife, a family physician who served his residency at MCMC in the early eighties and then joined the staff of a local private hospital. Dr. Fife estimated that seventy percent of his clientele was Hmong, a fraction unequaled in any other practice in town. When I asked him why he was so popular, he was able to offer no explanation other than “Maybe I talk slower than the other doctors.” His patients have no problem explaining. Every Hmong I asked said exactly the same thing: “Dr. Fife doesn’t cut.” On the whole, that was true. Dr. Fife generally did not perform episiotomies on Hmong women, though he did not know why they didn’t want them, never having asked. He avoided cesarean sections whenever possible, and he had particularly endeared himself to his Hmong patients by handing them their babies’ placentas in plastic bags whenever they requested them, though he had no idea what they did with them and said he had never been curious. Roger Fife is not held in high esteem at MCMC. “He’s a little thick,” one resident told me. “He’s not the most intelligent graduate our program has ever had,” said another. “He’s an adequate physician,” said a third, choosing his words carefully. Though I doubt that even the most ecumenical of Merced’s doctors would wish to have more Hmong patients, still it must have been galling for these residents to realize that the Hmong community overwhelmingly preferred a doctor whose standard of care they believed to be inferior to their own. Roger Fife happened to espouse a philosophy that carried more weight with the Hmong than any degree of knowledge, intelligence, or technical skill. When I asked him why he didn’t usually force his Hmong patients to comply with conventional American medical practices, he shrugged and said, “It’s their body.”

7 / Government Property

Neil Ernst was a doctor of a different breed. It would have gone completely against his grain to apply two different standards of care to his patients: a higher one for the Americans, a lower one for the Hmong. But might Lia Lee have been better off if her family had brought her to Roger Fife? Might Neil actually have compromised Lia’s health by being so uncompromising? That latter question still bothers him. For example, if Lia’s prescriptions hadn’t been changed so often, her parents might have been more likely to give her her medications, since they would have been less confused and more confident that the doctors knew what they were doing. Neil was pretty sure, however, that because Lia’s condition was progressive and unpredictable, he could treat it best by constantly fine-tuning her drug regimen. If he had chosen a single pretty-good anticonvulsant and stuck with it, he would have had to decide that Lia wasn’t going to get the same care he would have given the daughter of a middle-class American family who would have been willing and able to comply with a complex course of treatment. Which would have been more discriminatory, to deprive Lia of the optimal care that another child would have received, or to fail to tailor her treatment in such a way that her family would be most likely to comply with it?

A decade ago, that is not the way Neil looked at the situation. He never seriously considered lowering his standard of care. His job, as he saw it, was to practice good medicine; the Lees’ job was to comply. Lack of compliance constituted child endangerment, which is a form of child abuse. He postponed calling Child Protective Services for as long as he could, giving Lia’s parents every possible chance to reform, talking the case over with his wife nearly every night, worrying that “what happened in Fresno” might happen in Merced. (He and Peggy had both heard, and believed, the rumor about the Hmong father in Fresno who hanged himself in his prison cell after being unjustly arrested for child abuse.) Neil finally decided that he had no choice but to request that Lia be placed in foster care. Other options he has considered in retrospect, such as arranging for a nurse to visit the Lee house three times every day to give Lia her medicine or enlisting the help of Hmong community leaders to increase parental compliance, either seemed at the time to have insuperable bureaucratic obstacles or simply didn’t occur to him. When I asked Neil whether, once he had made up his mind, he continued to brood about the effect his decision would have on the Lee family, he said, “Yeah, sure. I mean, you always do. But you get so single-minded about the child’s welfare that you can pretty effectively suppress any kind of bad feelings you have about what you do to the parents. And there was another part—and here I am speaking for myself, not for Peggy—which is that I felt that there was a lesson that needed to be learned. I don’t know if this is a bigoted statement, but I am going to say it anyway. 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. I wanted the word to get out in the community that if they deviated from that, it was not acceptable behavior.”

Once he had determined that Lia’s parents were endangering her health, it was fully within Neil’s legal rights to file a report with Child Protective Services. In fact, he might have committed a crime if he hadn’t filed a report. Failure to report child abuse is a prosecutable offense in forty-four states, including California. Because physicians — along with other health care workers, teachers, day-care employees, and police officers—are especially likely to come across evidence of abuse, all fifty states have immunity clauses in their child welfare laws that protect these groups from civil or criminal charges after they file abuse reports, even if they are found to be wrong.

The fact that Lia’s parents refused to give her the medications at least in part because of cultural or religious reasons (of which Neil was only hazily aware) would probably have cut little ice in court, even if the Lees had been savvy enough to try to defend their actions. If a child had not been involved, things would have been different. In cases involving competent adults, the principle of autonomy almost always takes legal precedence over the principle of beneficence, which means, for example, that a Jehovah’s Witness has a right to refuse a blood transfusion, or a Christian Scientist a course of chemotherapy, even if he or she dies as a result. But with a minor, the state has the right— indeed, the obligation— to force the patient to comply with a life-saving treatment, even if it is forbidden by the family’s religion. “Parents may be free to become martyrs themselves,” wrote Justice Robert Jackson in a 1943 Supreme Court decision. “But it does not follow that they are free, in identical circumstances, to make martyrs of their children.” Several parents who belong to fundamentalist sects have been jailed after the deaths of children whom they had attempted to cure with faith healing; no Christian Scientist has yet been imprisoned, though several have been convicted of involuntary manslaughter or child endangerment and sentenced to a combination of fines, probation, and community service.* If parents who practice these relatively mainstream religions have so consistently failed to sway the courts, it is doubtful that a judge would have been favorably impressed had the Lees informed him that they were shamanistic animists who believed their daughter’s illness was caused by the loss of her soul and could be treated most effectively by animal sacrifice.

Neil never had any desire to have Lia’s parents prosecuted, and no legal action was ever taken against them. All he wanted was to get Lia out of their hands and into the stewardship of someone who would administer her medications exactly as he prescribed them. On May 2, 1985, she was placed temporarily in a foster home run by two Mennonite sisters who, whenever she became hyperactive, strapped her into an infant car-seat on the living room floor. After two weeks, she was returned home and her parents were given one last chance. Blood tests continued to show that they were giving her less than the prescribed dose of Tegretol. At this point, the Merced Department of Child Protective Services filed Petition #15270 with the Superior Court of the State of California, “In the Matter of LIA LEE, a Person coming within the Provisions of the Juvenile Court Law.” The petition began: "Your petitioner is informed, believes and therefore alleges, (1) That the above named minor resides at: 37 East 12th St., Apt. A, Merced, California. (2) That said minor is two years 11 months of age, having been born on the 19th day of July, 1982. (3) That said minor comes within the provisions of section 300 Subdivision A of the Juvenile Court Law of the State of California, as follows: Said minor is in need of proper and effective parental care and has no parent willing to or capable of exercising such care and control. Said minor is an epileptic with a complex seizure disorder, and the parents are administering sub-therapeutic medication levels. As a result of the parents’ failure to comply with medication instructions, said minor has had multiple hospitalizations and severe seizures which have been lifethreatening. The doctor states that said minor needs to be removed from the parental home at this time to preserve the life of said minor. There is a substantial danger to the physical health of said minor and there are no reasonable means by which said minor’s physical health can be protected without removing the minor from her parents’ physical custody."

It concluded: "WHEREFORE, your petitioner prays that this Court declare said minor to be a Dependent Child of the Juvenile Court."

On June 26, Lia was removed from her home again, this time for a placement of at least six months. Her parents were not notified in advance that she was going to be taken. When the CPS workers arrived, Foua was out of the house, visiting relatives. Several years later, Nao Kao told me, through an interpreter, what had happened. (He was under the impression that the social workers, who were accompanied by a Hmong interpreter named Sue Xiong, were police officers.) “The police came to take Lia away. Sue told the doctor that we didn’t give Lia any medicine and that is why the doctors got mad and they came to take Lia away. I was very angry. I almost killed the translator. I said, This is my child and I love her. The police said for six months Lia is government property.”

Foua told me, “When I came home my husband told me that they took the baby and he said that they didn’t tell them where they took the baby. I didn’t know any English so I didn’t know what to think or what to say. I told my elder relatives, but they said, Well, if those people came to take her, then you can’t do anything. I cried so much that I thought my eyes would go blind.”

It was interesting to me that almost none of the MCMC residents— even those who had taken care of Lia many times in the emergency room and, years later, could recall the medical aspects of her case in minute detail—were aware, until I told them, that Neil had arranged to have Lia removed from her family. When they heard about it, every one of them disagreed with his decision, though none of them could suggest a better alternative. Neil had not deliberately concealed what had happened. It was simply not his habit to discuss emotionally charged topics, especially ones about which he felt apprehensive or ambivalent, with anyone but his wife. When I told Dan Murphy about Lia’s placement in foster care, he was astounded. “Neil must have been just desperate to do something like that,” he said. “That’s the first time I’ve ever heard of a child being taken away from good caretakers. You know, it’s usually somebody who is willfully harming their child, either through extreme neglect or through actually doing them damage, but Lia’s parents really loved their kid. If I was in another country and somebody took my kid for reasons that I couldn’t understand, I would at least start considering violent alternatives, I really would.”

In Merced’s Hmong community, especially among the Lee and Yang clans, everyone knew about what had happened. The news of Lia’s disappearance confirmed what many people had already suspected, that doctors were not to be trusted and that they were in league with other coercive authorities—a lesson of sorts, but not the one Neil had in mind. Long after the event, I asked Kia Lee and Koua Her, two Hmong interpreters who worked for the public health department, what they had thought of the matter. (Kia is a woman and Koua a man.) They both remembered it well. “Maybe they should not take Lia away,” said Kia diplomatically. “Maybe this was not right. The parents not want to hurt the child. They try very hard to be good parents. They lost many child in Laos and they love this child very very much. In Laos, the parent have one hundred percent responsibility over the child. How can you say you can take it away unless it is orphan?” Koua said more sharply, “It was not necessary for CPS to take the kid. If they don’t care about the kid, okay, but parents love the kid more than others in the house. The mother was crying and crying all the time. The father he was not crying, he was very angry. Hmong men do not cry even if you feel sad. In Laos, I never heard of this happening in my life.”

In a master’s thesis in anthropology called “Analysis of Cultural Beliefs and Power Dynamics in Disagreements About Health Care of Hmong Children,” a Minnesota physician named Kathleen Ann Culhane-Pera summarized the Hmong attitude toward responsibility in pediatric medical cases: "Hmong parents believe parents are responsible for the child’s welfare and for deciding the child’s medical treatment. Since parents gave birth to the child, provide for the child’s physical needs, and love the child, they are the ones who decide the treatment approach for the child. Because family members love the child and are part of the family, they can assist the parents in making decisions about the optimal actions. Respected family lineage leaders also assist parents in making difficult decisions about serious conditions. But as physicians are not family members, they cannot make decisions for the child…. If doctors take over the parents’ responsibility, and decide to treat without parental permission, then doctors are responsible for the consequences. If the child dies, it is their fault; and how will they repay the parents? Indeed, how will they pay for the life?" As long as doctors and parents continue to negotiate, even if they disagree, the conflict is confined to differences in belief systems. “Once the police are called and court orders are obtained, however, the difficulties escalate to another level,” wrote Culhane-Pera. “The differences are no longer about beliefs. The differences are about power.

Doctors have power to call the police and to access state power which Hmong parents do not have.” Because the Hmong have historically been so resistant to authority, they are especially confused and enraged when they are stripped of their power in a country to which they have fled because of its reputation for freedom. As one parent, whose sick child was forced to have a spinal tap after the doctor obtained a court order, told Culhane-Pera, “The way we feel, the United States is more communist than our country is.” Another angry parent who had had a similar experience told her, “No matter how much we don’t know about technology, about human health, physical, but we have seen a lot in experience too. I don’t want any doctor to treat any human being like an animal. Animals, they don’t understand, but human beings do, we do know how to talk. We do understand like anyone who is a human being. We are just refugees but we are human beings like any doctor too.”

Once a child is removed from parental custody, Child Protective Services must file an explanatory petition within two days, and a detention hearing is usually scheduled for the day after the petition is filed. Nao Kao Lee appeared in court on June 28, 1985, accompanied by a public defender. No one remembers whether an interpreter was there as well. The judge approved CPS’s petition to detain Lia; Nao Kao, who was unaware that it was permissible to object, is recorded as assenting. The plan detailed in the Disposition of Case #15270 called for Lia to remain in foster care for six months, the minimum time that Neil estimated would be needed to stabilize her seizure disorder. Her parents would be permitted weekly visits, though these did not start until she had been away from home for more than a month. In fact, following a policy, common at the time, that was intended to prevent distraught parents from immediately retrieving their children, CPS did not inform Foua and Nao Kao of their daughter’s whereabouts for several weeks. According to Nao Kao, “After one month, I went to my cousin who speaks English and asked him to call the police and ask where Lia is because my wife was missing Lia too much and she was going crazy.” Lia was to be reunited with her family after six months only if the court was persuaded that her parents would comply with her medication regimen. Child Protective Services was to work with them to increase that likelihood. If the court did not decide within a year that Lia could safely return to her family, the Lees would permanently lose custody.

It was the responsibility of CPS to find Lia an appropriate foster home. Her caseworker filled out a form for “Specialized Foster Care”— that is, care for a child with unusual medical or behavioral problems. Among the “Behavior Problems of Child” that she circled were: “Has had one or more violent episodes, causing minor physical injury within the last year.” “Has caused minor [property] damage on six or more occasions within the past year.” “Displays self-injurious behavior (biting, scratching) at least once a month.” “Becomes aggressive or hostile when frustrated.” “Does not participate in social activities.” “Does not participate in group projects.” “Is hyperactive in all environments.” “Is resistive in all situations.” “Has temper tantrums daily.” The caseworker was to add up the points and rank the cumulative severity of the problem behavior on a scale from 40 (the best) to 70 (the worst). At 81, Lia’s score was off the scale. The only categories in which she received favorable—indeed, perfect—scores were “No evidence of depressive behavior,” “Responds to affection appropriately,” and “Gives affection appropriately.”

A day or two before Lia was removed from her home, Dee and Tom Korda, a couple living twenty-five miles northwest of Merced who had recently been certified as foster parents, received a call from CPS. “We’ve got a two-year-old Hmong girl with epilepsy,” said the social worker. “Can you handle it?” At the time, Dee Korda had never heard the word “Hmong,” had four children of her own, was pregnant with her fifth, and was taking care of another foster child, her first. “Sure,” she said. Dee told me several years later, “I was so eager I would have taken anything they offered.”

I was curious to meet the Kordas, because when I called Dee, the first thing she had said was, “How are Foua and Nao Kao? Don’t you just love them?” Since at that point I had never heard an American say a good word about the Lees, and since I subscribed to the conventional wisdom that biological parents and foster parents are natural enemies, her question threw me somewhat off balance. When I arrived at the Kordas’ rambling one-story house, which was in a dairy community dotted with peach and almond orchards, I was greeted by several large dogs that Dee and Tom, with the help of the five biological and six foster children, most of them retarded or emotionally disturbed, who were living with them at the time, were raising as canine guides for the blind. As we sat in the living room, Dee simultaneously showed me a small scrapbook full of pictures of Lia (she keeps one for every child she has cared for) and dispensed hugs to children of various sizes and races who wandered in and out.

After Lia arrived in the Korda house, she cried continuously for ten days. “Lia was the only child I’ve ever heard who could cry while inhaling and exhaling,” said Dee. “In and out, loud and abrasive, on and on and on. I know she was crying for them, for her mom and dad, even though she didn’t know the words to tell me. I’d find her curled in the bathtub, her face real worried and troubled and confused and sad. Sometimes she would pound at the door like a caged animal and shout, ‘Na! Na! Na! Na!’ Now I know that means daddy in Hmong.” (In fact, Lia was probably saying niam—pronounced “nya”—which means mother; the word for father is txiv.) Because the Kordas spoke no Hmong, they had no way of comforting Lia verbally. The only thing that seemed to help was constant physical contact. During the day, Dee simultaneously carried Lia in a backpack and her own youngest child, who was nine months old when Lia arrived, in a frontpack. At night, Lia usually slept in the Kordas’ bed, which was ten and a half feet wide, large enough to accommodate a substantial fraction of the household. When Lia was inconsolable, Dee, guessing correctly that she had never been weaned, breastfed her alongside her own baby. “If there was ever going to be a way, it was Lia’s way,” she told me. “That’s what she was used to. Her family let her rule the roost at home because she was the special child, the princess. Oh, Lia could be ornery and strong-willed, but she was a sweetie too. She’d crawl on your lap. She was so beautiful. We didn’t mean nothing to her at first, but she learned to love us. She knew how to love and how to let people love her. We were blessed to have Lia.”

Jeanine Hilt, the CPS caseworker, frequently visited the Kordas during this period and kept a Welfare Services Contact Record that gives some idea of what the Kordas’ less blessed days with Lia were like. Some of the entries:

  • Lia’s problems are very behavioral. Cries constantly. Real disruptive, real anger. Will cry non-stop 2–5 a.m.—kicking. Won’t give in. Family is on edge.
  • Tantruming. Withholds food. Looks at Dee, takes off her panties and pees.
  • Pooping on floor now.
  • Bit herself on lip.
  • Lia crying 4 days straight. Smearing feces.
  • Intense crying again. Stripped herself, peed on the floor, went on a wave of destruction. Had to sedate her.

Noting that Lia had “inflicted numerous injuries on other children ranging from bruises to cuts requiring stitches” that she required constant supervision to keep her from “activities that she has previously experienced as harmful or dangerous, i.e., hot water, bathtubs, high places, swimming pool, etc.” and that the Kordas were providing an “extremely high level of care,” Jeanine Hilt successfully petitioned the Department of Human Resources to pay Dee and Tom the unusually high fee of $1,000 a month for taking care of Lia. (The Lees had supported themselves and the seven of their nine surviving children who were living at home, including Lia, on $790 a month in welfare payments plus $84 that Lia, whose epilepsy had qualified her for disability funding, received as Supplemental Security Income.)

In her letter to the Department of Human Resources, Jeanine Hilt also noted that Dee Korda was taking Lia to between two and five doctors’ appointments a week. Despite the fact that Dee followed the anticonvulsant prescriptions to the letter (a task that sometimes required holding Lia down and repeating the doses after she spat them all over Dee’s clothes), Lia was still seizing. In fact, she seized more frequently at the Kordas’ than she had when she was living with her own family. She was hospitalized four times at Emanuel Medical Center in Turlock, the town nearest the Kordas’ home, and on one occasion was transferred from Emanuel to MCMC, which did not make a favorable impression on Dee.

“The MCMC nurses wouldn’t talk to her nice and soft,” she told me.

“When she soiled her bed, it wasn’t Oh honey, it was My god what a mess. They’d tie both arms and both legs with cloth, like nursing homes use on old people. It was degrading.” Lia’s new doctors in Turlock changed her prescription several times, eliminating first the phenobarbital and then the Tegretol and substituting various combinations of Dilantin, Depakene, and Ritalin. According to Dee, the new regimens had fewer side effects. “Tegretol and phenobarbital were the worst combination for Lia,” she said. “The worst. When she took them she was drunk, she couldn’t navigate or walk. I think that’s why her parents wouldn’t give them to her. Then she’d have a seizure and everyone would get mad at them.” Lia’s coordination improved, but her seizures continued.

After they found out where their daughter had been taken, Lia’s family visited her whenever their nephew, who owned a car, could give them a ride. The first time they visited, Dee showed them how she carried Lia on her back, just the way Foua did, and how Lia slept in the family bed. The Korda children lent the Lee children bathing suits, and they all swam together in the backyard pool. Pang crawled on the lawn with Dee’s baby. Eventually, the Lees’ twelve-year-old daughter May became friends with the Kordas’ ten-year-old daughter Wendy, and once spent a whole week at their house. Foua embroidered a nyias, a Hmong baby carrier, for Dee. After a few months went by, Dee started leaving her own baby with Foua when she took Lia to medical appointments—perhaps the first instance in the history of Child Protective Services that a foster mother has asked a legally abusive parent to baby-sit for her. It did not take the Kordas long to decide that CPS had made a mistake in taking Lia away from her family (though CPS, when Dee told them so, did not agree). “I was attached to Lia, but she really needed to be at home,” said Dee. “Foua and Nao Kao were so warm, so caring, and they loved that child so much. I’m bitter. They never should have been in the system.” By the time I met Dee, she had taken care of a total of thirty-five foster children, most of whom had been severely battered or sexually abused by their parents. Lia was the only one for whom she had ever recommended reunification.

At the end of each of the Lees’ visits to the Kordas’ house, Lia tried to get in the car with them and screamed with panic when they drove away without her. Nao Kao told me, “The family really took care of Lia and really cared for her too, but maybe she missed us too much and that is why she got sicker. We missed her too. I do not know how to describe how we missed her.” Foua said, “Our bed was empty without her. I loved her a lot and I had always held her during the night and didn’t let her sleep by herself. I cried every night when I got in the bed and she was not there.” Two months after Lia had been taken from her family, Nao Kao told the caseworker that he wanted to commit suicide if Lia did not come home. Four months after that, Nao Kao came home to find Foua pointing a knife at herself. He took the knife away. A month later, Jeanine Hilt’s case log noted that Foua was hysterical and threatening suicide again. Child Protective Services considered placing the entire family in a psychiatric hospital, but decided against it.

Lia did not return home after six months, as the Lees had expected her to. On December 18, 1985, at the Six-Month Reunification Hearing, the court ruled that Foua and Nao Kao had failed to demonstrate their ability to comply with their daughter’s medical regimen. First, they had refused to sign a Social Services Plan that had been presented to them in August, which stated, among other things, that in order for reunification eventually to take place, the Lees must agree to “make and meet medical appointments for our child, including appointments for routine care and illness, and learn how to properly administer her medication.” A CPS worker wrote on the Plan, “Their feeling is that Lia should be returned to their care at once; consequently they declined to sign the agreement.” Second, when Lia had been permitted a week-long home visit in September as a test of her parents’ compliance, they had failed miserably. The CPS petition against reunification noted: "The parents were again instructed, via interpreter, on the proper method of administering the medications. Color coded graphics were also utilized to reinforce the instructions. The parents stated they understood and indicated that they would follow through immediately. During this visit the parents were allowed to have the minor treated by a Shamin [sic] from the Hmong culture. Home calls by social workers were completed during the time the minor was at home and the medications were checked and it appeared as though the medications were being administered. The parents report no seizures. Lia was returned to the foster home on September 9, 1985 and was hospitalized later that day. Blood level checks revealed that no traces of any medications were found in the minor’s blood. Dr. Goel [Lia’s pediatrician at Emanuel Medical Center] stated that the parents did not give Lia any medicine as the medication remains in the body for at least ten days. The medication vials were returned empty by the parents." Jeanine Hilt wrote in her case log that when Lia returned to the Kordas, her chest was covered with coin-rubbing lesions. Foua and Nao Kao had obviously opted for traditional healing techniques and, as Jeanine noted, “trashed the meds.” Four days after this home visit, Lia had three grand mal seizures and six petit mal seizures, after which her developmental deficits became far more pronounced. The petition stated that "language delays were noted, her motor skills regressed, she would not eat or maintain eye contact, and she engaged in repeated headbanging behavior. Lia also became encopretic [fecally incontinent], engaged in a variety of self-abusive behaviors such as scratching and biting, could not sleep, was abusive to other children, and lost all ability to recognize safe situations. These regressions were all related to the parents’ failure to administer the medication while Lia was in their care. These regressive behaviors have continued."

Despite these setbacks, Jeanine Hilt was determined to try to continue to educate the Lees about Lia’s medications so that they could regain custody before twelve months elapsed and they legally lost her for good.

Jeanine spent dozens of hours working with Foua. Her task was aided by the fact that Lia’s drug regimen was radically simplified in February of 1986. Dee had taken Lia to Valley Children’s Hospital in Fresno for extensive neurological testing, where Terry Hutchison, a pediatric neurologist, reached a tentative diagnosis of Lennox-Gastaut Syndrome, a rare form of epilepsy characterized by mental retardation and several forms of hard-to-control seizures. Dr. Hutchison decided that Depakene, used alone, was the drug of choice. (Neil and Peggy had considered Depakene but had decided against it because it can cause liver failure; once Lia was started on it, they wished they had prescribed it themselves.) Pediatric Depakene is a liquid that tastes pleasantly of cherries, and it was far easier to administer than the complicated combinations of bitter ground-up pills Lia had previously been taking. Jeanine showed Foua how to use a plastic syringe to squirt the liquid into Lia’s mouth, placing a piece of masking tape at the 8-cc mark because Foua couldn’t read numbers. Foua practiced with water until she was proficient, then graduated to Depakene.

Jeanine felt that Foua was slowly learning to trust her and was making good progress. She did not develop a similarly intimate relationship with Nao Kao, who continued to fear that Lia would never come home. He was wary of Jeanine, but he was not angry at her. His rage was reserved for Sue Xiong, the interpreter who had accompanied the CPS workers on the day of Lia’s original detention. Sue Xiong, a sophisticated, well-educated Hmong woman who had married an American, was not a popular figure in Merced’s traditional Hmong community. Intermarriage is rare among the Hmong. According to Jeanine Hilt, “Culturally Sue was pretty white, and she dressed real cute and was not at home having babies and sustaining the Hmong culture very well, so a lot of Hmong really saw her as selling out.” Sue Xiong once told Nao Kao that she had informed CPS she did not think he should get his daughter back. In February of 1986, when Lia was at Valley Children’s Hospital in Fresno, Nao Kao says Sue Xiong scolded him, and he became convinced that she was not accurately translating his statements to the doctors. The next day, back in Merced, Jeanine Hilt, Sue Xiong, and a CPS supervisor came to the Lee house. Nao Kao told me, “I was outside and Sue came inside and she called me and said, Come in here, you come in here. At that time, I was ready to hit Sue, and I got a baseball bat right there. My son-in-law was with me, and he grabbed me and told me not to do it. The supervisor and Jenny [Jeanine] asked what’s the matter, and my son-in-law translated what I was saying, and I said I did not like Sue and I was going to beat Sue to death right there that day. And then Sue said that she had a lot of work to do, so she left. I told the supervisor, This person is not good. Do not bring her here anymore. If you bring her here again, I’m going to get a gun and shoot her.” (When I called Sue Xiong to ask her about this incident, at first she told me—in the most elegant English I had ever heard a Hmong speak—that she could not recall either the argument or the Lee family, which I found surprising, since I knew that before she married her American husband she had been married to Nao Kao’s nephew. Finally she said, “The family didn’t appreciate my services, so I didn’t want to be involved anymore.” )

It is a credit to Jeanine Hilt’s faith in the Lees that Sue Xiong’s near encounter with Nao Kao’s baseball bat did not permanently disqualify them from regaining custody of their daughter. The way Jeanine saw it, Nao Kao had plenty of reasons to be angry, and as long as he didn’t take out his anger in the form of medical noncompliance, it should not interfere with the reunification of his family. Starting on February 18, 1986, the Lees were permitted to keep Lia for a series of overnight visits under Jeanine’s supervision. Blood tests showed they had administered adequate levels of Depakene. In the petition CPS filed at Lia’s Twelve- Month Reunification Hearing, Jeanine Hilt wrote: "As the Lees’ skill increased, the visits were extended. The undersigned provided extensive supervision three times daily while the minor was in the home. Supervision decreased as the Lees demonstrated their willingness to maintain the medication regime…. The undersigned has worked with the Lees on maintaining a daily schedule including proper diet, naps, and discipline…. Mr. and Mrs. Lee are to be commended for their cooperation and positive efforts in working with the undersigned in spite of their divergent cultural beliefs. As a result of their hard work, trust in the physician [neurologist Terry Hutchison], and the undersigned, we have made incredible headway in resolving Lia’s serious medical problem."

Lia returned home on April 30, 1986.

8 / Foua and Nao Kao

In 1988, during my first few weeks in Merced, seven doctors at the Merced Community Medical Center separately mentioned the case of Lia Lee to me, but each of them told me it was not worth investigating, because her parents mistrusted Americans and would almost certainly refuse to let me see Lia’s medical and legal records, or to talk with me themselves. Even if they agreed to meet me, I was assured that I would find them silent, obtuse, and almost pathologically lacking in affect.

I was ready to be discouraged. Before I came to Merced, I had never met a Hmong, but I had received plenty of advice from anthropologists I’d read or consulted on what to do when I did: Don’t raise your voice. Take off your shoes. Don’t offer to shake hands with a man or people will think you’re a whore. If a man offers to shake hands with you, indicate your lower status by placing your left hand under your right wrist in order to support the weight of his honored and important hand. If you walk with a Hmong leader, stay behind him and to his left. Use an older male interpreter to compensate for your lack of status as a younger woman. Don’t ever say no to an offer of food, even if it’s chicken feet.

It did not seem a promising sign that my friend Bill Selvidge, the doctor who had invited me to Merced to meet his Hmong patients, had bookshelves jammed with ethnographic monographs on the Ik, the !Kung, and the Palauans, but during his two years in Merced had never had an extended conversation with a Hmong over the age of fourteen, had never been invited inside a Hmong home, and had learned only one word of Hmong: mob (“it hurts”). If an anthropologically inclined Peace Corps veteran had made so little headway, how could I expect to get anywhere myself? Indeed, my first few Hmong encounters proved disastrous. It probably did not help that, mortally afraid of committing a faux pas, I was as jumpy as the legendary Hmong princess who, hiding inside a large funeral drum after an eagle as big as eleven houses had eaten everyone else in her village, mistook her handsome young rescuer for the eagle and told him, “If you have come to eat me, do it quickly, please!” Then she fainted. (Later, however, she married him.)

My first meetings with Hmong families were set up by a Hmongspeaking lowland Lao woman who worked as a nurse’s aide at MCMC. It did not immediately occur to me that I had found the best possible way to guarantee myself a chilly reception, since almost all Hmong mistrusted the hospital and, concluding that I was associated with the nurse’s aide and therefore with MCMC, automatically mistrusted me too. I also had bad luck with my first two interpreters. Carefully following my advisers’ instructions, I asked two middle-aged men in turn, each an important figure in his clan, to translate for me. My experiences with them were identical. I would ask a question. The interpreter would translate. The Hmong I was questioning would talk animatedly to the interpreter for four or five minutes. Then the interpreter would turn to me and say, “He says no.”

I was beginning to fear that the Hmong community was impenetrable when I met Sukey Waller, the psychologist at Merced Community Outreach Services whom one doctor at MCMC had described as “a sort of hippie-ish revolutionary” and Bill had described as the American most locally respected by the Hmong. I had talked with Sukey by phone from New York City before I came to Merced. She had told me, “Here’s my home number. If you get my answering machine, you will find I speak so slowly it sounds as if I’m in the middle of a terrible depression or on drugs. Please don’t be alarmed. It’s just that I get a lot of calls from clients who can’t understand fast English.” Sukey’s business card read, in Hmong and Lao, “Fixer of Hearts.” She explained to me, “Psychological problems do not exist for the Hmong, because they do not distinguish between mental and physical illness. Everything is a spiritual problem. It’s not really possible to translate what I do into Hmong—a shaman is the closest person to a psychotherapist—but fixing hearts was the best metaphor I could find. The only danger is that they might think I do openheart surgery. That would certainly make them run in the other direction.” Sukey introduced me to five Hmong leaders, representing four of the most influential of Merced’s fourteen clans, and, because I arrived at their homes and offices in her company, I was warmly received by each one. Two of them became irreplaceable sources and, over time, valued friends. When I asked Sukey why the Hmong community accepted her so readily, she said, “The Hmong and I have a lot in common. I have an anarchist sub-personality. I don’t like coercion. I also believe that the long way around is often the shortest way from point A to point B. And I’m not very interested in what is generally called the truth. In my opinion, consensual reality is better than facts.”

Sukey quickly disabused me of two notions. One was that it was necessary to walk a razor’s edge of proper etiquette on either side of which lay catastrophe. She said matter-of-factly, “I’ve made a million errors. When I came here everyone said you can’t touch people on the head, you can’t talk to a man, you can’t do this, you can’t do that, and I finally said, this is crazy! I can’t be restricted like that! So I just threw it all out. Now I have only one rule. Before I do anything I ask, Is it okay? Because I’m an American woman and they don’t expect me to act like a Hmong anyway, they usually give me plenty of leeway.” She also punctured my burgeoning longing for an American interpreter. For one thing, she informed me that even though there were thousands of Hmong living in Merced, not a single American in town spoke Hmong. For another, in her opinion, someone who merely converted Hmong words into English, however accurately, would be of no help to me whatsoever. “I don’t call my staff interpreters,” she told me. “I call them cultural brokers. They teach me. When I don’t know what to do, I ask them. You should go find yourself a cultural broker.”

So I found May Ying Xiong. May Ying was a twenty-year-old clerktypist at the Merced County Office of Refugee Services. Her name means Opium Poppy. She was the girl whose father, Chaly Xiong, afraid that she would be eaten by lions if she took a summer job with the Youth Conservation Corps, had occasioned Dan Murphy’s lion-scouting trip to Yosemite. Chaly, who died in 1983, was a first lieutenant in the Royal Lao Army, one of the few Hmong military officers who had been trained in the United States by the CIA. He was also a famous txiv neeb who, while riding his wooden shaman’s bench, an embodiment of the winged horse that carried him in search of wandering souls, was renowned for shaking so hard during his ritual trance that it took two assistants to hold him. To complete May Ying’s distinguished résumé, she had at age eighteen been Second Runner-Up in the national Miss Hmong pageant, held annually in the Fresno Civic Auditorium, in which she had worn three formal costumes (one Hmong, one Lao, one American) and been judged on her poise, grace, beauty, and speaking ability. When asked, “If you were chosen to be Miss Hmong, what would you do to set an example for future young Hmong ladies?” May Ying had answered, “I would encourage children to go to school and young ladies not to get married too young.” One month later, she married an engineering student named Pheng Ly in a Hmong-American ceremony that involved the sacrifice of a chicken and the consumption of many bottles of Löwenbräu. May Ying took great pride in the fact that Pheng had paid her family the unusually high brideprice of $1,800; she in turn had contributed a dowry that consisted of a trust fund left by her father, a silver necklace, a silver belt, gold earrings, three embroidered skirts, two formal Hmong costumes, two pieces of embroidery embellished with antique French colonial coins, and a ’73 Ford Granada.

Despite the admonitions of the seven doctors, I decided to try to meet Lia’s parents, bringing May Ying as my cultural broker. I figured that if she was the third-most-poised Hmong woman in the United States, she had as good a chance as anyone of being able to deal with the Lees. Despite May Ying’s impressive qualifications, she and I, by virtue of our gender and ages, constituted a decidedly low-status team. That turned out to be an advantage. I didn’t need more status in the Lee home. If anything, I needed less status. Ever since they had arrived in the United States, the Lees had been meeting Americans who, whether because of their education, their knowledge of English, or their positions of relative authority, had made them feel as if their family didn’t count for much. Being belittled is the one thing no Hmong can bear. When Laos was under French colonial rule, the Hmong were required literally to crawl whenever they were in the presence of a Lao official, forbidden to raise their heads until they were acknowledged. It is no accident that in one popular Hmong folktale, an arrogant official is turned into a mouse, upon which the tale’s hero, a Hmong archetype in the guise of a cat, takes delight in pouncing. With May Ying at my side, I was not an official, not a threat, not a critic, not a person who was trying to persuade the Lees to do anything they did not wish to do, not even someone to be taken very seriously. My insignificance was my saving grace.

Meeting a Hmong is like getting into a speakeasy: everything depends on who sent you. My appointment with the Lees had been arranged by Blia Yao Moua, one of the Hmong leaders to whom Sukey had introduced me, a man fortuitously unconnected to the hospital or any other American institution. What’s more, May Ying’s husband, Pheng, belonged to the same clan as the Lees (Lee and Ly are differently spelled Americanizations of the Hmong surname Lis), which led Foua and Nao Kao to treat my cultural broker like a long-lost niece. Within thirty seconds, I could see I was dealing with a family that bore little resemblance to the one the doctors had described. The Lees struck me as smart, humorous, talkative, and energetic. I wish I could say that it was my skill as an interviewer that brought out these excellent qualities. In truth, I repeatedly embarrassed May Ying by asking her to translate questions of such surpassing ignorance that after I got to know the Lees I began to feel my primary role in their household was as a source of mirth. May Ying referred to these questions (“Did you bury your children’s placentas?” “In Laos, were there a lot of dabs who lived in the rivers, lakes, and trees?” “Do you sacrifice pigs?”) as my “Is the Pope Catholic?” questions because any fool would know the answers were yes. Once, when I asked in which part of their house in Laos the family had relieved themselves, Foua laughed so hard she almost fell off her bamboo stool. “In the forest, of course!” she finally gasped, tears running down her cheeks.

The Lees were a good-looking couple. Foua looked about forty-five and Nao Kao about ten years older; they had never learned their birth dates. They were both short, and although neither was fat, they looked well-rooted, as if it would take a gale force wind, or maybe even an earthquake, to knock them over. Foua had glossy black hair that she usually wore in a bun, but sometimes she loosened it absent-mindedly while she was talking, and it unfurled to her waist. Nao Kao wore glasses with thick black frames that made him look intellectual and a little nerdy, like a teacher of an obscure branch of mathematics at a minor college. Except on special occasions, when they wore Hmong clothes, they both wore loosely fitting American outfits of pastel polyester. Sometimes Foua wore a long gray cotton skirt and a pink T-shirt, decorated with palm trees, that said CALIFORNIA, a word she of course could not read.

When I first met Foua and Nao Kao, they had seven children still at home. The nine of them lived in a three-room apartment in a two-story stucco building south of the train tracks and west of the Kmart, in a down-at-heel neighborhood that twenty years ago was mostly Hispanic and now is mostly Hmong. Like most Hmong apartments, it contained hardly any furniture aside from a television set, which was usually on. There were no books. Hung close to the ceiling, to show respect, was a heterogeneous collection of family photographs and posters, including an outdated calendar from a Thai rice company, a Time-Life illustrated chart of Combat Jets of the World, and a picture of several dozen Smurfs gathered around a campfire. The bedroom shared by the older children was plastered with posters of U2, Bon Jovi, Whitesnake, and Mötley Crüe. The family’s most prized possession, a three-foot-long bamboo qeej that only Nao Kao knew how to play, was carefully mounted over the toilet. The most important part of the Lee home was the parking lot. It was there, in an overflowing collection of dozens of old five-gallon plastic buckets and discarded motor-oil cans, that Foua cultivated her personal pharmacopoeia of medicinal plants, which, boiled or ground in her mortar and pestle, were used to cure sore throats, stomachaches, sprained limbs, and postpartum pain, among other ailments.

I was to spend hundreds of hours in this apartment, usually in the evenings, after May Ying got off work. Because Foua and Nao Kao could not read or write in any language, they were excessively interested in and therefore inhibited by note-taking, but they were entirely comfortable with a tape recorder. (Most Hmong in Merced communicated with relatives in Thai refugee camps via audiocassette. I could never decide whether this was incongruously high-tech or whether it was an organic extension of their preliterate oral tradition.) When addressing Foua, May Ying prefaced each question with the word pog, a title connoting both respect and intimacy that means, literally, “paternal grandmother.” After a few months, Foua started to address May Ying as mi May, dear little May, and me as mi Anne. At about the same time, at their request, I started calling Foua tais (maternal grandmother) and Nao Kao yawm txiv (maternal grandfather).

The Lees unhesitatingly granted me access to all of Lia’s records at MCMC, Valley Children’s Hospital in Fresno, the Merced County Health Department, and Child Protective Services. After I read them, however, I quickly learned that it was not helpful to ask May Ying to relay such questions as “Can you tell me about the time Dr. Selvidge admitted Lia to MCMC with right upper lobe pneumonia on June 28, 1986, at 10:50 p.m.?” The doctors’ diagnoses were untranslatable, and in any case they would have meant little to the Lees. Furthermore, Foua and Nao Kao lumped the dozens of health care providers they had encountered at MCMC under the generic heading of “Lia’s doctors.” Even Neil Ernst and Peggy Philp, who had met Lia’s family innumerable times, were relegated by their unshakably high status (and also perhaps, from a Hmong point of view, by their unpronounceability) to a category too distant to allow such intimacies as being called by name. The difficulty of establishing a parallel chronology between Lia’s medical chart and her family’s experience of her illness was compounded by the fact that the Lees did not tell time in the same way the hospital record-keepers did. Years were identified not by number but by salient event. For instance, 1982 was “the year the spirit first caught Lia and she fell down” 1985 was “the year Lia became government property.” When they had lived in Laos, the Lees, like other Hmong, had subdivided the year not by the months of the Gregorian calendar but by lunar cycles designated by their primary agricultural activities. The first cycle, for example, which followed the Hmong New Year celebration in late November or early December, was the one during which rice and corn were hauled home and the opium harvest was begun. The fifth cycle was the one during which corn was planted. The twelfth cycle was the one during which rice was harvested and opium was weeded. Because the Lees were now unemployed welfare recipients rather than farmers, and each month’s activities (or their lack) were nearly identical to every other month’s, they no longer oriented themselves by the Hmong calendar and consequently often had trouble remembering when—even in what season —an event had occurred. But when they referred to times of the day, they continued to use the Hmong phrases (“first cock crow,” “second cock crow,” “time that the sun inclines,” “time that shadows cover the valley,” “pig-feeding time,” “full darkness”), even though no cocks or pigs had lived on East 12th Street within living memory of any resident of Merced.

The Lees politely submitted to my questions about Lia, often answering at length, but they also had their own agenda, which, as Nao Kao once put it, was “to tell you about Hmong culture so you can understand our way and explain it to the doctors.” Their favorite time for these cultural lessons was about 10:30 p.m., after they’d gathered conversational steam for at least four hours. One night, just as May Ying and I were getting ready to leave, Foua decided to explain soul loss to me. “Your soul is like your shadow,” she said. “Sometimes it just wanders off like a butterfly and that is when you are sad and that’s when you get sick, and if it comes back to you, that is when you are happy and you are well again.” Nao Kao added, “Sometimes the soul goes away but the doctors don’t believe it. I would like you to tell the doctors to believe in our neeb.” (The word neeb, or healing spirit, is often used as shorthand for ua neeb kbo, the shamanic ritual, performed by a txiv neeb, in which an animal is sacrificed and its soul bartered for the vagrant soul of a sick person.) “The doctors can fix some sicknesses that involve the body and blood, but for us Hmong, some people get sick because of their soul, so they need spiritual things. With Lia it was good to do a little medicine and a little neeb, but not too much medicine because the medicine cuts the neeb’s effect. If we did a little of each she didn’t get sick as much, but the doctors wouldn’t let us give just a little medicine because they didn’t understand about the soul.”

On another late-night occasion Nao Kao explained that the Hmong often got sick because of their encounters with malevolent dabs, but that the doctors didn’t understand this either and therefore failed to treat these patients effectively. “I will give you an example,” he said. “There is a man named Mr. Xiong, and he has a son who went to swim at Bear Creek.” Bear Creek is a small, muddy river that flows through Applegate Park, north of downtown Merced. “And while Mr. Xiong’s son was sleeping, the dab that lives in Bear Creek came up to him and talked to him and made him sick and restless and crazy. The doctors and nurses in Merced gave this young man shots and medicines, and the young man hated the doctors and nurses, because the only way to cure that kind of sickness is to sacrifice a dog, and this country won’t allow you to kill dogs.” Foua told me that a dab had caught her just the previous week at the county reservoir. She knew this had happened because after she returned home, she felt afraid, and when she closed her eyes, she could sense that a dab was near. She left all the lights on that night to frighten the dab away, and she did not become sick. (Several months later, I was to learn that Merced’s dabs were not confined to natural surroundings. Chong Moua, a Hmong woman who cleaned Bill Selvidge’s house once a week, told me that every Hmong in town knew about the dab who lived at the intersection of Highway 99 and G Street. This dab liked to cause accidents by making Hmong drivers fall asleep or making the cars of approaching Americans invisible.)

The longer I spent with the Lees, the more firmly Foua took me in hand. She improved my manners by teaching me, via May Ying, how to say please and thank you in Hmong. When she learned that I occasionally got headaches, she gave me detailed instructions on how to treat them by rubbing an egg-covered coin up and down my body. I think she was disappointed that I never actually contracted a headache on her premises so that she could heal it then and there. “But you remember,” she said. “Next time, you do it the way I said.”

When Foua had known me for almost a year, she decided to get me married. The Hmong have a phrase, “a flower full of honey and ready for the bee,” which is used to describe a marriageable girl of fifteen or sixteen. I was thirty-five, and had thus been ready for the bee for two decades. When my boyfriend visited me in Merced, Foua realized that she finally had an opportunity to do something about this appalling situation. Her plan, of which she did not inform me in advance, was to dress me as a Hmong bride, a transformation she was certain would render me irresistible.

My makeover took place on a sweltering summer day. The temperature in the Lees’ bedroom must have been well over 100°. Out of a battered suitcase that she kept in the back of her closet, Foua extracted piece after piece of exquisite paj ntaub. (Paj ntaub, which means “flower cloth,” is a traditional Hmong textile art in which geometric or organic designs—spiderwebs, ram’s heads, tiger’s eyebrows, elephant’s feet—are worked in embroidery, batik, appliqué, and reverse appliqué. In Laos, a Hmong man was said to value two qualities most highly in a wife: her ability to sing poetry and her skill at paj ntaub.) Foua had made these clothes for her daughters. They constituted the lion’s share of the family’s wealth.

Assisted by her fourteen-year-old daughter May, the oldest Lee girl still living at home, and by May Ying Xiong, Foua dressed me like a doll. I was completely at their mercy, since I had no idea which garment was coming next and, when it came, what part of my body it was supposed to adorn. First Foua picked up a phuam, a pink-and-black sash at least twenty feet long, and wound it around me like a ribbon around a maypole. Its function was the precise opposite of a girdle’s: it was supposed to fatten me up, to transform me into a healthy Hmong farm wife who looked capable of carrying heavy loads of rice. Then came the tiab, a pink, green, and yellow skirt with about five hundred accordion pleats, which, if it had been spread out, would have been wider than I was tall. Its cross-stitching was so fine it looked like beading. May Ying told me later that it had probably taken Foua the better part of two years to make, and that it would take her several hours to restitch threads through each of its pleats to prepare it again for storage. Over that went a pink brocade sev, a kind of apron, whose paj ntaub work was protected by an American refinement, a layer of plastic wrap. On my upper half I wore a blue-andblack jacket called a tsho (the same word as the Hmong term for “placenta,” one’s first garment) and four hnab tshos, pocketlike bags decorated with dangling silver coins, which were hung bandolier-style across my chest and weighed a ton. Around my neck went a five-tier necklace of hollow silver. Around my calves May Ying wrapped a pair of black puttees called nrhoob. And on my head Foua balanced the pièce de résistance, a kausmom, a pink, green, and yellow hat, bedizened with its own set of silver coins, that was shaped like a pagoda and jingled whenever I moved. Although I nearly died of heat prostration during the forty-five minutes it took Foua, May, and May Ying to wrestle all this stuff onto me, I felt for the first time in my not very fashionable adulthood that I understood the ritual pleasure of women gussying each other up and giggling like crazy in rooms to which men were forbidden entrance.

While all this was taking place, my friend George was sitting in the air-conditioned living room, watching a boxing match on television with Nao Kao and wondering what I was doing. Neither he nor Nao Kao spoke a word of each other’s language, but they communicated in the universal language of male bonding by throwing punches in the air and making appreciative grunts. When I emerged from the bedroom, George was, in a word, stunned. He didn’t think I looked good, exactly. He told me later that I resembled Tom Kitten in “The Roly-Poly Pudding,” after Mrs. Whiskers ties him up and covers him with pie dough. However, Foua’s work must in some way have had the intended effect, because a week later George asked me to marry him. When we told Foua that we were engaged, she didn’t act in the least surprised.

Later, when I complimented Foua on her beautiful needlework, she said matter-of-factly, “Yes, my friends are proud of me because of my paj ntaub. The Hmong are proud of me.” That is the only time I ever heard her say anything kind about herself. She was otherwise the most self-deprecating woman I had ever met. One night, when Nao Kao was out for the evening, she remarked, out of the blue, “I am very stupid.” When I asked her why, she said, “Because I don’t know anything here. I don’t know your language. American is so hard, you can watch TV all day and you still don’t know it. I can’t dial the telephone because I can’t read the numbers. If I want to call a friend, my children will tell me and I will forget and the children will tell me again and I will forget again. My children go to the store to buy food because I don’t know what is in the packages. One time when I went to the hospital I went to the bathroom, and the hall went that way and that way and that way and that way, and I didn’t know which way to go, and I couldn’t get back to where I was because too many sad things have happened to me and my brain is not good anymore.”

When I suggested that I would have had at least as much trouble finding my way around her village in Laos as she had finding her way around MCMC, Foua said, “Maybe, but in Laos it was easy. I didn’t know how to do anything but farm.” Venturing that it couldn’t have been quite so easy as she claimed, I asked her to describe a typical day in Houaysouy, the village in the northwestern province of Sayaboury where the Lee family had lived. She tilted her head to one side for a moment, thinking. Then she said, “In the season when you have to tend to the rice fields, you get up at first cock crow. In the other seasons, you can wake up at second or third cock crow. Even at third cock crow it is before dawn, and it is dark, so the first thing you do is light a lamp. The lamp was like this.” Foua walked into the kitchen and came back holding the bottom three-quarters of a Mountain Dew can, which was filled with oil and had a homemade cloth wick. “In Merced, when the electricity goes out, we still use one like this,” she said.

“First you cook the rice for your children,” she continued. “Then you clean the house with the broom you tied together yourself. After you are finished sweeping you go and cut wild grasses to give to the pigs, and you cut more for the cows, and you feed the pigs and the cows and the chickens. Then you walk to the fields. You carry the baby on your back, and if you have two children your husband carries one on his back too, and if you have a lot of children you can leave some of the smaller ones home with the big ones. Our parents grew opium, but we just grew rice, and also peppers, corn, and cucumbers. When it is planting time, first you make a hole in the ground like this.” She walked back to the kitchen and, after rummaging around for something with which to demonstrate to me the use of a dibble stick, returned with a cardboard tube that had once held a roll of paper towels, which she proceeded to stab at one-foot intervals into her living room’s brown wall-to-wall carpeting. “Like this. Then you put the seeds in the holes. You and your husband do it together. In other seasons you clear the fields and harvest the rice and thresh and winnow the rice and grind the corn.”

At this point in her narrative, her daughter May walked in, wearing shorts, a T-shirt that said TIME FOR THE BEACH, and pink plastic earrings. May was three and a half when her family left Laos. She sat on the carpet at her mother’s feet and listened. “The farm place was far from where we lived,” said Foua, “farther than from here to Bear Creek. If you leave the farm when it is still light, it is dark by the time you get home. When you get home you go to the stream and carry the water for cooking and bathing in a barrel on your back.” Foua showed me how she had made the pack-barrel, gesturing with her fingers to illustrate how the bamboo was wrapped around the wooden staves. “You bathe the babies by boiling the water and then you pour it with a smaller bowl. The older children can bathe themselves. You bring corn for the chickens and you feed the pigs, and then you cook for your family. We usually just ate leftover rice from our first meal, with a little vegetables, because we ate meat only about once a month. You cook on the hot coals of the fire and you use the fat from the last pig you killed to fry with. The smoke just goes through spaces in the roof. After dinner you sew by the light of that lamp. In the fields you wear clothes that are old and dirty and ripped up, but the children have to have good clothes for New Year’s, so you sew for them at night.”

I asked Foua to describe their house. “It is made of wood from the forest,” she said, “some wood as big as telephone poles. The thatching is bamboo. I helped build it. Our relatives helped us too, and then we help our relatives when they need a house. Our house is all one room but it is very nice. The floor is earth. If you want to sleep, you take some bamboo, you cut it open and split it into small pieces that are springy and make it into a bed. We sleep next to the fireplace where it is warm because we don’t have any blankets. My husband sleeps on one side holding a baby, I sleep on the other side holding another baby, and the older children keep each other warm.”

While Foua was telling me about the dozens of tasks that constituted her “easy” work in Laos, I was thinking that when she said she was stupid, what she really meant was that none of her former skills were transferable to the United States—none, that is, except for being an excellent mother to her nine surviving children. It then occurred to me that this last skill had been officially contradicted by the American government, which had legally declared her a child abuser.

I asked Foua if she missed Laos. She was silent for a few seconds, rocking back and forth on her low bamboo stool while her daughter looked at her, waiting curiously for her answer. Then she said, “When you think about Laos and about not having enough food and those dirty and torn-up clothes, you don’t want to think. Here it is a great country. You are comfortable. You have something to eat. But you don’t speak the language. You depend on other people for welfare. If they don’t give you money you can’t eat, and you would die of hunger. What I miss in Laos is that free spirit, doing what you want to do. You own your own fields, your own rice, your own plants, your own fruit trees. I miss that feeling of freeness. I miss having something that really belongs to me.”

9 / A Little Medicine and a Little Neeb

“When Lia came back,” recalled Nao Kao, “the car came up here and when the door opened, she just jumped up and ran into her home. Her sisters and brother were too happy to even do anything. Everyone just went out and hugged her. That night she was in our bed and we were so happy to have her sleeping by our side.”

Looking over Lia’s sparse medical records from the spring and summer of 1986, around the time of her fourth birthday, Peggy Philp summed up the first few months after her return from foster care in three words: “Nothing interesting here.” The Lees would disagree. Neil and Peggy had previously spent hours recounting the details of medically complex periods in Lia’s history that Foua and Nao Kao had summarized for me in a few minutes; now the tables were turned, and a period that seemed uneventful from the doctors’ perspective was revealed, from the Lees’ perspective, to be one of the richest in her life.

The first thing Foua and Nao Kao did after Lia returned was to celebrate her homecoming and bolster her health by sacrificing a cow. In Laos, most of the chickens, pigs, cows, and buffalos kept by Hmong families were reserved for sacrifices to propitiate ancestors or cure illnesses by offering the souls of the slaughtered animals as ransom for fugitive souls. Even families too poor to keep animals of their own were guaranteed occasional meat in their diets by being invited to neeb ceremonies performed by wealthier villagers. According to Dwight Conquergood, sacrifice is a sacred act performed with “respect and reverence.” He has written, “The souls of sacrificed animals are precious and vitally connected to human souls. Animals are not considered to be as far removed from the human species as they are in our world view…. Since the bonding between the life-souls of the patient and sacrificed animal is so intimate, it is likened to souls being wedded together.” Eric Crystal, the coordinator of the Center for Southeast Asia Studies at U.C. Berkeley, takes an equally approbatory, if not quite so high-minded, view. “So what if some Hmong feel that they have to slaughter animals to make the proper kinds of sacrifices?” he once asked me rhetorically. “Why not? It happens because people usually mark religious events that are important to them by getting together with relatives, and it is very difficult in this world to get a whole bunch of relatives together, whether you are living in some village in Laos or in Manhattan, without giving them something to eat. So you sacralize the event. The whole animal is offered, and the whole animal is eaten. I mean the whole animal, ninetyeight percent of it, intestines and everything, in a very ecologically sound way. Americans toss away a huge amount of meat. We also kind of slip it under the rug that people actually have to kill animals to eat them. Indeed, it may be shocking to many Americans to find out that their $1.99-a-pound chicken breast actually had to get its throat cut in a processing plant. So Americans are real shocked if they find out that the Hmong are doing it right in their own houses.”

During the last decade, shocked Americans have responded to the ritual killings performed by devotees of other religions by invoking legal sanctions. In Hialeah, Florida, animal rights activists and community leaders passed an anti-sacrifice ordinance in 1987 to prevent priests of the Afro-Cuban Santería faith from slaughtering animals, a practice one local resident said “blights the image of South Florida.” (The ban was overturned, but it took four years and a Supreme Court decision.) In Los Angeles, where followers of Santería and several other Hispanic sects were suspected of nailing cows’ tongues to trees and leaving entrails on sidewalks, an ordinance was passed in 1990 that made animal sacrifice punishable by a six-month prison term and a fine of up to $1,000. It is still on the books, though it is not currently being enforced. In Merced, almost every Hmong family I met sacrificed animals on a regular basis. In fact, a fourteen-year-old boy I knew, a member of the Moua clan, once complained that he hardly ever had enough free time on weekends because his parents made him attend so many of his relatives’ neeb ceremonies. Until the mid-nineties, however, most American residents of Merced had little idea what was going on, and no one seemed concerned that it might blight the image of Central California. “Well, I haven’t run into any sacrificial chickens,” Pat Lunney, the chief of police, told me with some amusement several years ago. “Sacrifices?” said Steve Nord, the city attorney. “Do they really do that?”

The Hmong have a phrase, yuav paim quav, which means that the truth will eventually come to light. Literally, it means “feces will be excreted.” I knew it was only a matter of time before feces would be excreted on the subject of Hmong animal sacrifices, and indeed, in 1996, tipped off by local newspaper coverage of a dog sacrifice in Fresno, the residents of Merced began to realize that similar things might be taking place in their town. That the animals were killed quickly and cleanly— and, unlike the products of a meat-packing plant, were actually thanked for their services—failed to extenuate what seemed like aberrant behavior. The result was an ordinance banning the slaughter of livestock and poultry within city limits. For most Hmong, the need to heal sick family members far outweighed the claim of a mere law, so they paid no attention, and few neighbors were nosy enough to report them. However, rumors about the sparsity of dogs and cats on Merced’s south side, which had circulated sotto voce for several years, upped their volume.

The rumors were false, but that did nothing to stop them. Dan Murphy told me where they had originated. “There was a small stove fire in a Hmong house here a few years back,” he said, “and one of the firemen opened the refrigerator. There was a roast pig in there. The fireman thought it was a dog, and he told his friends, and they told theirs, and instantly people were saying that the reason there aren’t so many strays around here anymore is that the Hmong are eating them all, and you’d better lock up your dog at night. Well, Dang Moua heard this.” Dang Moua is a local Hmong leader. “And he went and got the fire chief and brought him over to the house and opened the refrigerator and said, ‘This is a pig. Can’t your men tell the difference between a pig and a dog?’ And that should have settled it. But you know, it’s not as much fun to tell about the resolution of a story as it is to tell about the genesis, so that part didn’t get spread around very far.”

The Hmong of Merced do not sacrifice dogs, which they know are protected by American law and custom—though some of them, like the victim of the dab of Bear Creek that Nao Kao told me about, may have wished that they could. They do, however, frequently sacrifice pigs and chickens, which they buy live from Hmong or American farmers. To sacrifice a cow, as the Lees did, is a rare and important event. It was the first time they had done so during their six years in the United States. Lia’s cow cost $300, a monumental sum for a family of nine who were living on $9,480 a year, plus food stamps. When I asked Nao Kao where the money had come from, he said, “Lia had her own money from the government.” It took me a moment to understand: he had bought the sacrificial cow with three and a half months’ worth of Lia’s Supplemental Security Income, a use to which federal disability assistance had probably never before been put.

Because Nao Kao had no way of transporting a live cow to East 12th Street, he bought one from an American rancher who lived near Merced, had it slaughtered, and, with the help of some of his clansmen, cut it in pieces small enough to stuff into plastic garbage bags that fit on the floor and in the trunk of his cousin’s subcompact car. After they returned home, a txiv neeb performed the ritual chant that accompanied his journey to the realm of the unseen. During the chant, the cow’s severed head was sitting on the Lees’ front stoop, welcoming Lia’s soul. When I asked the Lees whether any American passersby might have been surprised by this sight, Foua said, “No, I don’t think they would be surprised, because it wasn’t the whole cow on the doorstep, only the head.” Nao Kao added, “Also, Americans would think it was okay because we had the receipt for the cow.”

After the ceremonial portion of the neeb was complete, the Lees and their many invited relatives sat down and ate a large, festive meal of fried beef, boiled beef, a spicy ground-beef dish called laab, and a stew called kua quav. When I asked May Ying what kua quav was, she said, “It’s made out of cow’s intestines and the heart and the liver and the lungs, and you chop it up really fine, and there is a part that is what is inside the intestines, and you chop that up too. Then you boil it all up together and you put lemon grass and herbs in it. It has a really bad name when you translate it. I guess you could call it, oh, doo-doo soup.” (The literal translation of kua quav is liquid excrement.) “It’s a classic.”

The celebratory mood of Lia’s first few days home began to dissipate as the Lees came to feel, more strongly with each passing week, that the child who had been taken from them had been returned in a damaged condition. According to May Lee, Lia had once been able to count in English and Hmong and knew all the tunes and lyrics of the traditional Hmong New Year’s songs. “Before the Americans took her away, Lia was really smart,” said Nao Kao. “If you came in the door, she would say hello and bring a chair for you. But after those months that she was government property, I don’t know what they did to her. Maybe they gave her too much medicine, or maybe she got sick because she missed us too much, because after that, when people come, it seems she does not know them, and she could only speak a little.” The Lees were under the impression that the court had returned Lia to them because foster care had made her sicker, clear evidence that her family’s care was superior. When I told Neil and Peggy this, they were surprised. They had also noted Lia’s worsening developmental deficits, but in their view her downward intellectual slide had begun before she was removed from parental custody, had been temporarily arrested by her regular drug regimen during foster care, and had then been seriously aggravated by the seizures she had had after her catastrophic week-long visit home in September 1985, during which her parents had failed to administer any medications. Neil and Peggy were even more surprised—and grieved—to learn that the Lees believed Lia had been taken from them in the first place not to safeguard her health but “because the doctors were angry at us” for being noncompliant, and wished to inflict punishment. And when I told them that Foua and Nao Kao, in their willingness to travel the middle road of “a little medicine and a little neeb,” viewed themselves as eminently reasonable and their doctors as incapable of compromise, Neil and Peggy shook their heads in puzzlement and consternation."

In order to keep Lia’s condition from deteriorating further, the Lees stepped up their program of traditional medicine. I had often heard doctors at MCMC complain that the Hmong seemed to care less than Americans did whether their sick children got better, since they spurned the hospital’s free medical care. Unbeknownst to their doctors, the Hmong actually took their children’s health so seriously that they frequently budgeted large fractions of their public assistance stipends or indebted themselves to relatives in order to pay for expensive services not covered by Medi-Cal. For example, the Lees spent $1,000 on amulets filled with sacred healing herbs from Thailand, which Lia wore constantly around her neck. They also tried a host of less costly but timeconsuming therapies. Foua inserted a silver coin that said “1936 Indochine Française” into the yolk of a boiled egg, wrapped the egg in a cloth, and rubbed Lia’s body with it; when the egg turned black, that meant the sickness had been absorbed. She massaged Lia with the bowl of a spoon. She sucked the “pressure” out of Lia’s body by pressing a small cup heated with ashes against her skin, creating a temporary vacuum as the oxygen-depleted air inside the cup cooled. She pinched Lia to draw out noxious winds. She dosed Lia with tisanes infused from the gleanings of her parking-lot herb garden. Finally, she and Nao Kao tried changing Lia’s name to Kou, a last-ditch Hmong remedy based on the premise that if a patient is called by a new name, the dab who stole her soul will be tricked into thinking that she is someone else, and the soul can return. According to Foua, this plan was foiled because Lia’s doctors persisted in calling her Lia, thus ruining the subterfuge.

The Lees’ most ambitious act of healing was taking Lia to visit a famous txiv neeb in Minnesota. “We had heard this txiv neeb was very special because he can fix people and he gives good medicines,” explained Nao Kao, in the deferential tones of someone describing a distinguished specialist he has gone to great trouble and expense to consult at the Mayo Clinic. “When this txiv neeb was younger he had gotten sick himself with the same thing as Lia, where the spirit catches you and you fall down. For the Hmong people, they usually get that kind of sickness before they become a txiv neeb, and maybe when Lia was grown up, that would have happened to her too, and she would be a txiv neeb. This txiv neeb was also a member of the Lee clan, so that is why we took Lia to Minnesota.”

Nao Kao, one of his brothers, one of his grown daughters, his son-inlaw, and Lia spent three days driving to Minnesota. “We rested one night in Salt Lake City and one night in Wyoming,” said Nao Kao, “and then we took another day to get to Nebraska and then we took the whole night from Nebraska to get to Minnesota. We just stopped to get gas. I only drove for three hours in Wyoming because Lia kept trying to hug me, so I couldn’t drive, so someone else drove and I just held her.” He did not remember where the txiv neeb had lived, but recalled that it was several hours beyond St. Paul. “The txiv neeb tied spirit-strings around Lia’s wrist and gave her some green medicine from roots and things like that. Some of it was boiled and you drink the juice and some of it you boil until it crystallizes and it gets really sticky, and after it dries you eat it.” The three family members who had accompanied them stayed in Minnesota with relatives, and Nao Kao, again using SSI money, flew home with Lia, filled with optimism about her future well-being.

Once I asked Bill Selvidge why Merced’s doctors never seemed to ask their Hmong patients how they treated their illnesses, and he replied that because the Hmong dressed at least approximately in American clothes, had driver’s licenses, and shopped in supermarkets, it never occurred to his colleagues—and only rarely to him—that they might practice esoteric healing arts. “If you went down to the rain forest and talked to the Yanomamo,” he said, “you’d be surprised if they didn’t come up with all sorts of fantastic spirit stories. You’d be surprised if they sat there and started saying, you know, ‘Where is the penicillin for my impetigo?’ But if you took them to this setting, the way the Hmong have come here, and you dressed them up and they drove a car and came to MCMC, you wouldn’t expect to hear those spirit stories anymore.”

Neil and Peggy had no idea what the Lees were doing to heal Lia because they never thought to ask. The only American who did ask, and who therefore learned of the $1,000 amulets and at least some of the animal sacrifices, was Jeanine Hilt. I would have expected the Lees to focus the most burning rays of their resentment on Jeanine, an official representative of the very agency that had confiscated their daughter. On the contrary, the Lees chose to categorize her not as Lia’s abductor but as her patron, “the person who gave Lia her disability money.” Aside from Dee Korda, Jeanine was the only American I talked to who didn’t describe the Lees as closemouthed and dim; not coincidentally, she was also the only American I ever heard Foua or Nao Kao refer to by name. They called her Jenny. She responded by learning the names of all eight of Lia’s siblings: Chong, Zoua, Cheng, May, Yer, True, Mai, and Pang. Compared to the Olympian Drs. Ernst and Philp, who never volunteered their first names, Jeanine seemed warm and unpretentious. Even her size —five feet one and comfortably rounded—was closer to the Hmong scale. Neil and Peggy were respectively six two and five nine, and seemed even taller because they had such perfect posture. Jeanine also had more success keeping the lines of communication snarl-free, partly because, as a social worker, she was able to make house calls. (In all their years of dealing with the Lees, Neil never visited their home and Peggy visited only once.) She took the sensible step of using May, the Lees’ most Americanized daughter, as her interpreter. Not only was May’s English excellent—like my interpreter, May Ying Xiong, she had learned it in an American high school, so her grammar and vocabulary were superior to those of almost any Hmong adult—but after Jeanine left, Foua and Nao Kao were able to ask May, as often as was necessary, “Explain what Jenny said again.”

Jeanine’s empathy for the Lees may have been deepened by two factors: she understood what it was like to live with a chronic illness, because she had severe asthma herself; and she admired the closeness of Hmong families, because her relations with her own family, who were fundamentalist Christians, had been strained for many years, ever since they had learned she lived with a lesbian partner. She had no children of her own. Unlike the MCMC nurses who considered Lia a burden and a pest, Jeanine thought she was a delightful child. “I just totally fell in love with her,” Jeanine recalled. “Lia wasn’t your typical kid that would play appropriately with toys and, you know, do all the right things. She was like a little blowfly flitting about, just totally out of control and wild and unsocialized but—well, absolutely adorable. Physically, I found her a very attractive child. She was real cute and real huggable. I mean, this kid could give you a hug like no other kid could. She would climb into your arms and sit in your lap and just give you a terrific bear hug and grab your glasses and pinch your cheeks until they hurt.”

Jeanine’s involvement in Lia’s case rapidly escalated from a professional assignment to an obsession. A typical Hilt letter, written with cheerful officiousness to Judith Eppley, a counselor at a regional agency for the developmentally disabled: "RE: Lia Lee Dear Judy, Please forward, to me, copies of all psychological, neurologicals, assessments, evaluations, reports, work-ups, impressions, studies, reviews, ruminations, appraisals, opinions, etc. on the above named minor. I hope that covers it. Thanks for your help! Sincerely, Jeanine Hilt Social Worker" In Neil’s opinion, Jeanine was “a large pain in the ass.” He remembered innumerable times when she had nagged him for information about Lia or for prescriptions for medical equipment he considered unnecessary, such as an electronic digital thermometer that she hoped to teach Foua to use, with May’s help in reading the numbers. Whatever she requested was always needed “immediately” and at no cost to the Lees. “Jeanine took on the Lees like a crusade,” said Neil. “She always wanted to be notified about any change in Lia’s condition, and, my God, it wasn’t like we didn’t have six billion other things that we had to think of. If you forgot to call her she’d read you the riot act. I think she had trouble understanding that Lia was just one of hundreds or thousands of patients that we took care of and we couldn’t drop everything and do exactly what she wanted. But it was a double-edged sword. She was good, too. Jeanine was an incredible patient advocate. There was nothing she wouldn’t do for this kid.”

One of the things Jeanine arranged was to have Lia bused three days a week to the Schelby Center for Special Education, the county school for retarded and disabled children. She hoped that Schelby would help socialize Lia as well as giving Foua an occasional respite. Lia’s teacher, Sunny Lippert, recalled, “Lia was very spoiled. Jeanine Hilt told us the family felt that she talked to the gods during her seizures and that they had this euphoric idea that she was a princess. They fixed her special things to eat, and whatever she wanted, they did. If she raised her arms her mother would carry her through the house. She got rather chubby, and the more she sat around and let people do things for her, the heavier she got. She was a beautiful child. Her mother just groomed her until she was immaculate. Lia could charm the hair right off a dog. She was the type you’d just want to pick up, but I had a rule in my room: No one could pick up Lia. Of course, as soon as she went home, her family kept right on catering to her.”

Believing that Lia’s behavioral problems stemmed partly from a lack of daily structure, Jeanine posted the following on the Lees’ wall:
Lia’a Schedule

  • 7 - Wake-up Breakfast Bath
  • 8 - Meds Leave for school
  • 1 - Home from school
  • 2 - Meds Nap
  • 4 - Playtime
  • 6 - Dinner
  • 7 - Bath Pyjamas
  • 8 - Meds Bed

Despite May’s help in reading it, this schedule never fully took hold, partly because of Foua’s and Nao Kao’s orientation to the cock-crow system rather than to the clock. Another fruitless effort was a list of instructions about how to administer Tylenol and Valium to prevent febrile seizures when Lia spiked a temperature. Jeanine went to great trouble to have it translated into swirly Lao script, failing to realize that no one in the Lee family spoke or read Lao. But in her most important goal—persuading the Lees to administer Lia’s medicine—Jeanine achieved a stunning success. Blood tests showed that Lia was regularly maintaining a therapeutic level of Depakene. During her first four months at home, she had only one seizure, her best record since infancy. Jeanine attributed this period of unusual health to the Depakene; the Lees attributed it to the successful intervention of the txiv neeb in Minnesota.

In September of 1986, Lia fell off a swing at the Schelby Center, hit her head, and went into status epilepticus, the condition, dreaded by all her doctors, in which her seizures, instead of spontaneously resolving after a few minutes, continued one after another with no intervals of consciousness. It was unclear whether Lia fell because she seized or whether she seized because she fell, but in any case, when she was taken to the hospital, she was found to have adequate levels of Depakene in her bloodstream. Parental noncompliance, for once, was manifestly not a factor. Nao Kao’s diagnosis was that “the teacher made her drop from the swing and when she fell she was scared and her soul went away too, so she got sick again.” In Lia’s MCMC admission summary, her medical history was noted to be “complicated” and her social history to be “very complicated.”

Neil remembers this admission, Lia’s fourteenth stay at MCMC, to be the most harrowing she had ever had. “She’d been doing real well—real, real well—and then came this unbelievable set of problems. She had a bad seizure, all of this food crap started coming out of her mouth and she aspirated a lot of it into her lungs, she went into respiratory failure, she couldn’t breathe for herself so we had to intubate her, then the breathing tube caused some local irritation of the trachea, so after we pulled it out she started breathing with a lot of difficulty and we had to reintubate her, and then she got this very unusual infection of the airway from the irritation. The parents had to go along with a lot of stuff, an oxygen mask, lots of IVs, blood work, an arterial line to measure the oxygen and carbon dioxide in her blood, real invasive stuff.” Nao Kao remembered this as the time when Lia “had a lot of plastic all over her.” He or Foua slept by Lia’s side every one of the fourteen nights she spent in the hospital. He recalled, “The doctors made Lia stay so long in the hospital, and it just made her sicker and sicker.”

Neil and Peggy co-authored an article in the Pediatric Infectious Disease Journal, called “Bacterial Tracheitis Caused by Branhamella catarrhalis,” about Lia’s tracheal infection. “Lia got published!” is how Neil put it when he showed me the article several years later. In it, they wrote: "Our case clearly demonstrates that this agent [B. catarrhalis] has the potential for being an opportunistic infection in the compromised respiratory tract of a pediatric patient. Our patient’s hospital-acquired infection was most probably the result of a local injury to the trachea from a cuffed endotracheal tube and from alteration of oral bacterial flora with intravenously administered penicillin." Not every doctor would choose to publicize a nosocomial, or hospitalacquired, infection, especially if, as was the case here, it was he rather than an inexperienced resident who had been responsible for inflicting the “local injury.” When I read the article, I was struck, as I had often been before, by how much more interested Neil and Peggy were in the truth than in making themselves look good. I was also struck by the fact that Nao Kao was absolutely right: the hospital had made Lia sicker.

Only three weeks after Lia was discharged, she was admitted again, despite adequate levels of medication, with severe seizures and fever. Neil and Peggy were horrified. “I had been really impressed that she was having such good control with the Depakene,” recalled Neil, “and then she had two seizures within a month and I said, Oh God, here we go again. The Depakene is not working! I couldn’t think of any good way to keep her seizures from getting worse. I remember we thought about putting her under anesthesia to stop her shaking the next time she came in, so we could at least get an IV in. And I remember Dan Murphy and I had a few conversations about whether we should try surgery, to try to cauterize part of Lia’s brain. I really didn’t know what to do. I was just grabbing at straws.”

Peggy said, “The seizures were getting very, very long. Before, sometimes they used to stop on their own, but these didn’t. It seemed like it took more medication to stop them, and we were afraid that one day we were going to try to get in an IV and just not be able to do it, because Lia was so fat and because we’d already cut down so many of her veins. If she seized long enough she was going to gork her brain out. Early that fall we started to get this feeling of doom. We talked about it a lot. It was hard to imagine that the Lia era would ever be over, but I remember thinking it was going to be. We were just waiting for the big one.”

Neil said, “I felt like there was this giant snowball that was coming down the mountain and we were trying to hold it up there and it just kept pushing us. I remember talking to the parents and telling them that Lia’s seizures were getting worse and more frequent and that someday she might have one we couldn’t stop. It was so haunting. I started to have nightmares that it was going to happen, and I would be the one on call, and I couldn’t stop it and she was going to die right before my eyes. It was inevitable. It was just a matter of when.”

DMU Timestamp: February 15, 2016 23:02