The Spirit Catches You and You Fall Down (4 page)

On March 3, 1983, Foua and Nao Kao carried Lia to the emergency room a third time. On this occasion, three circumstances were different: Lia was still seizing when they arrived, they were accompanied by a cousin who spoke some English, and one of the doctors on duty was a family practice resident named Dan Murphy. Of all the doctors who have worked at MCMC, Dan Murphy is generally acknowledged to be the one most interested in and knowledgeable about the Hmong. At that time, he had been living in Merced for only seven months, so his interest still exceeded his knowledge. When he and his wife, Cindy, moved to Merced, they had never heard the word “Hmong.” Several years later, Cindy was teaching English to Hmong adults and Dan was inviting Hmong leaders to the hospital to tell the residents about their experiences as refugees. Most important, the Murphys counted a Hmong family, the Xiongs, among their closest friends. When one of the Xiong daughters wanted to spend the summer working in Yosemite National Park, Chaly Xiong, her father, initially refused because he was afraid she might get eaten by a lion. Dan personally escorted Chaly to Yosemite to verify the absence of lions, and persuaded him the job would do his daughter good. Four months later, Chaly was killed in an automobile accident. Cindy Murphy arranged the funeral, calling around until she found a funeral parlor that was willing to accommodate three days of incense burning, drum beating, and
qeej
playing. She also bought several live chickens, which were sacrificed in the parking lot of the funeral parlor, as well as a calf and a pig, which were sacrificed elsewhere. When Dan first saw the Lees, he instantly registered that they were Hmong, and he thought to himself: “This won’t be boring.”

Many years later, Dan, who is a short, genial man with an Amish-style beard and an incandescent smile, recalled the encounter. “I have this memory of Lia’s parents standing just inside the door to the ER, holding a chubby little round-faced baby. She was having a generalized seizure. Her eyes were rolled back, she was unconscious, her arms and legs were kind of jerking back and forth, and she didn’t breathe much—every once in a while, there would be no movement of the chest wall and you couldn’t hear any breath sounds. That was definitely anxiety-producing. She was the youngest patient I had ever dealt with who was seizing. The parents seemed frightened, not terribly frightened though, not as frightened as I would have been if it was my kid. I thought it might be meningitis, so Lia had to have a spinal tap, and the parents were real resistant to that. I don’t remember how I convinced them. I remember feeling very anxious because they had a real sick kid and I felt a big need to explain to these people, through their relative who was a not-very-good translator, what was going on, but I felt like I had no time, because we had to put an IV in her scalp with Valium to stop the seizures, but then Lia started seizing again and the IV went into the skin instead of the vein, and I had a hard time getting another one started. Later on, when I figured out what had happened, or not happened, on the earlier visits to the ER, I felt good. It’s kind of a thrill to find something someone else has missed, especially when you’re a resident and you are looking for excuses to make yourself feel smarter than the other physicians.”

Among Dan’s notes in Lia’s History and Physical Examination record were:

Dan had no way of knowing that Foua and Nao Kao had already diagnosed their daughter’s problem as the illness where the spirit catches you and you fall down. Foua and Nao Kao had no way of knowing that Dan had diagnosed it as epilepsy, the most common of all neurological disorders. Each had accurately noted the same symptoms, but Dan would have been surprised to hear that they were caused by soul loss, and Lia’s parents would have been surprised to hear that they were caused by an electrochemical storm inside their daughter’s head that had been stirred up by the misfiring of aberrant brain cells.

Dan had learned in medical school that epilepsy is a sporadic malfunction of the brain, sometimes mild and sometimes severe, sometimes progressive and sometimes self-limiting, which can be traced to oxygen deprivation during gestation, labor, or birth; a head injury; a tumor; an infection; a high fever; a stroke; a metabolic disturbance; a drug allergy; a toxic reaction to a poison. Sometimes the source is obvious—the patient had a brain tumor or swallowed strychnine or crashed through a windshield—but in about seven out of ten cases, the cause is never determined. During an epileptic episode, instead of following their usual orderly protocol, the damaged cells in the cerebral cortex transmit neural impulses simultaneously and chaotically. When only a small area of the brain is involved—in a “focal” seizure—an epileptic may hallucinate or twitch or tingle but retain consciousness. When the electrical disturbance extends to a wide area—in a “generalized” seizure—consciousness is lost, either for the brief episodes called petit mal or “absence” seizures, or for the full-blown attacks known as grand mal. Except through surgery, whose risks consign it to the category of last resort, epilepsy cannot be cured, but it can be completely or partially controlled in most cases by anticonvulsant drugs.

The Hmong are not the only people who might have good reason to feel ambivalent about suppressing the symptoms. The Greeks called epilepsy “the sacred disease.” Dan Murphy’s diagnosis added Lia Lee to a distinguished line of epileptics that has included Søren Kierkegaard, Vincent van Gogh, Gustave Flaubert, Lewis Carroll, and Fyodor Dostoyevsky, all of whom, like many Hmong shamans, experienced powerful senses of grandeur and spiritual passion during their seizures, and powerful creative urges in their wake. As Dostoyevsky’s Prince Myshkin asked, “What if it is a disease? What does it matter that it is an abnormal tension, if the result, if the moment of sensation, remembered and analysed in a state of health, turns out to be harmony and beauty brought to their highest point of perfection, and gives a feeling, undivined and undreamt of till then, of completeness, proportion, reconciliation, and an ecstatic and prayerful fusion in the highest synthesis of life?”

Although the inklings Dan had gathered of the transcendental Hmong worldview seemed to him to possess both power and beauty, his own view of medicine in general, and of epilepsy in particular, was, like that of his colleagues at MCMC, essentially rationalist. Hippocrates’ skeptical commentary on the nature of epilepsy, made around 400
B.C.
, pretty much sums up Dan’s own frame of reference: “It seems to me that the disease is no more divine than any other. It has a natural cause just as other diseases have. Men think it is divine merely because they don’t understand it. But if they called everything divine which they do not understand, why, there would be no end of divine things.”
^*

Lia’s seizure was a grand mal episode, and Dan had no desire to do anything but stop it. He admitted her to MCMC as an inpatient. Among the tests she had during the three days she spent there were a spinal tap, a CT scan, an EEG, a chest X ray, and extensive blood work. Foua and Nao Kao signed “Authorization for and Consent to Surgery or Special Diagnostic or Therapeutic Procedures” forms, each several hundred words long, for the first two of these. It is not known whether anyone attempted to translate them, or, if so, how “Your physician has requested a brain scan utilizing computerized tomography” was rendered in Hmong. None of the tests revealed any apparent cause for the seizures. The doctors classified Lia’s epilepsy as “idiopathic”: cause unknown. Lia was found to have consolidation in her right lung, which this time was correctly diagnosed as aspiration pneumonia resulting from the seizure. Foua and Nao Kao alternated nights at the hospital, sleeping in a cot next to Lia’s bed. Among the Nurse’s Notes for Lia’s last night at the hospital were: “0001. Skin cool and dry to touch, color good & pink. Mom is with babe at this time & is breastfeeding. Mom informed to keep babe covered with a blanket for the babe is a little cool.” “0400. Babe resting quietly with no acute distress noted. Mom breast feeds off & on.” “0600. Sleeping.” “0730. Awake, color good. Mother fed.” “1200. Held by mother.”

Lia was discharged on March 11, 1983. Her parents were instructed, via an English-speaking relative, to give her 250 milligrams of ampicillin twice a day, to clear up her aspiration pneumonia, and twenty milligrams of Dilantin elixir, an anticonvulsant, twice a day, to suppress any further grand mal seizures.

In 1982, Mao Thao, a Hmong woman from Laos who had resettled in St. Paul, Minnesota, visited Ban Vinai, the refugee camp in Thailand where she had lived for a year after her escape from Laos in 1975. She was the first Hmong-American ever to return there, and when an officer of the United Nations High Commissioner for Refugees, which administered the camp, asked her to speak about life in the United States, 15,000 Hmong, more than a third of the population of Ban Vinai, assembled in a soccer field and questioned her for nearly four hours. Some of the questions they asked her were: Is it forbidden to use a
txiv neeb
to heal an illness in the United States? Why do American doctors take so much blood from their patients? After you die, why do American doctors try to open up your head and take out your brains? Do American doctors eat the livers, kidneys, and brains of Hmong patients? When Hmong people die in the United States, is it true that they are cut into pieces and put in tin cans and sold as food?

The general drift of these questions suggests that the accounts of the American health care system that had filtered back to Asia were not exactly enthusiastic. The limited contact the Hmong had already had with Western medicine in the camp hospitals and clinics had done little to instill confidence, especially when compared to the experiences with shamanistic healing to which they were accustomed. A
txiv neeb
might spend as much as eight hours in a sick person’s home; doctors forced their patients, no matter how weak they were, to come to the hospital, and then might spend only twenty minutes at their bedsides.
Txiv neebs
were polite and never needed to ask questions; doctors asked many rude and intimate questions about patients’ lives, right down to their sexual and excretory habits.
Txiv neebs
could render an immediate diagnosis; doctors often demanded samples of blood (or even urine or feces, which they liked to keep in little bottles), took X rays, and waited for days for the results to come back from the laboratory—and then, after all that, sometimes they were unable to identify the cause of the problem.
Txiv neebs
never undressed their patients; doctors asked patients to take off all their clothes, and sometimes dared to put their fingers inside women’s vaginas.
Txiv neebs
knew that to treat the body without treating the soul was an act of patent folly; doctors never even mentioned the soul.
Txiv neebs
could preserve unblemished reputations even if their patients didn’t get well, since the blame was laid on the intransigence of the spirits rather than the competence of the negotiators, whose stock might even rise if they had had to do battle with particularly dangerous opponents; when doctors failed to heal, it was their own fault.

To add injury to insult, some of the doctors’ procedures actually seemed more likely to threaten their patients’ health than to restore it. Most Hmong believe that the body contains a finite amount of blood that it is unable to replenish, so repeated blood sampling, especially from small children, may be fatal. When people are unconscious, their souls are at large, so anesthesia may lead to illness or death. If the body is cut or disfigured, or if it loses any of its parts, it will remain in a condition of perpetual imbalance, and the damaged person not only will become frequently ill but may be physically incomplete during the next incarnation; so surgery is taboo. If people lose their vital organs after death, their souls cannot be reborn into new bodies and may take revenge on living relatives; so autopsies and embalming are also taboo. (Some of the questions on the Ban Vinai soccer field were obviously inspired by reports of the widespread practice of autopsy and embalming in the United States. To make the leap from hearing that doctors removed organs to believing that they ate them was probably no crazier than to assume, as did American doctors, that the Hmong ate human placentas—but it was certainly scarier.)

The only form of medical treatment that was gratefully accepted by at least some of the Hmong in the Thai camps was antibiotic therapy, either oral or by injection. Most Hmong have little fear of needles, perhaps because some of their own healers (not
txiv neebs
, who never touch their patients) attempt to release fevers and toxicity through acupuncture and other forms of dermal treatment, such as massage; pinching; scraping the skin with coins, spoons, silver jewelry, or pieces of bamboo; applying a heated cup to the skin; or burning the skin with a sheaf of grass or a wad of cotton wool. An antibiotic shot that could heal an infection almost overnight was welcomed. A shot to immunize someone against a disease he did not yet have was something else again. In his book
Les naufragés de la liberté
, the French physician Jean-Pierre Willem, who worked as a volunteer in the hospital at the Nam Yao camp, related how during a typhoid epidemic, the Hmong refugees refused to be vaccinated until they were told that only those who got shots would receive their usual allotments of rice—whereupon 14,000 people showed up at the hospital, including at least a thousand who came twice in order to get seconds.

When Foua Yang and Nao Kao Lee brought their three sick children to the hospital at Mae Jarim, they were engaging in behavior that many of the other camp inhabitants would have considered positively aberrant. Hospitals were regarded not as places of healing but as charnel houses. They were populated by the spirits of people who had died there, a lonesome and rapacious crew who were eager to swell their own ranks. Catherine Pake, a public health nurse who spent six months working at Phanat Nikhom (a camp where refugees from Laos, Vietnam, and Cambodia came for their final “processing” before they were sent to a country of permanent asylum), concluded from a study of the hospital log that “in comparison to refugees of other ethnic groups, the Hmong have the lowest per capita rate of visits.” (Pake also discovered, not coincidentally, that the Hmong had an extremely “high utilization rate” of indigenous healing arts: shamanism, dermal treatments, herbalism. She published an article in the
Journal of Ethnobiology
identifying twenty medicinal plants she had collected under the tutelage of Hmong herbalists, which, in various forms-chopped, crushed, dried, shredded, powdered, decocted, infused with hot water, infused with cold water, mixed with ashes, mixed with sulphur, mixed with egg, mixed with chicken—were indicated for burns, fever, weakness, poor vision, broken bones, stomachaches, painful urination, prolapsed uterus, insufficient breast milk, arthritis, anemia, tuberculosis, rabies, scabies, gonorrhea, dysentery, constipation, impotence, and attacks by a
dab ntxaug
, a spirit who lives in the jungle and causes epidemics when he is disturbed. In this last case, the plant,
Jatropha curcas
, is crushed and its oil left in a cup, to be consumed not by the patient but by the
dab
.)

Wendy Walker-Moffat, an educational consultant who spent three years teaching and working on nutritional and agricultural projects in Phanat Nikhom and Ban Vinai, suggests that one reason the Hmong avoided the camp hospitals is that so many of the medical staff members were excessively zealous volunteers from Christian charitable organizations. “They were there to provide medical aid, but they were also there—though not overtly—to convert people,” Walker-Moffat told me. “And part of becoming converted was believing in Western medicine. I’ll never forget one conversation I overheard when I was working in the hospital area at Ban Vinai. A group of doctors and nurses were talking to a Hmong man whom they had converted and ordained as a Protestant minister. They had decided that in order to get the Hmong to come into the hospital they were going to allow a traditional healer, a shaman, to practice there. I knew they all thought shamanism was witch-doctoring. So I heard them tell this Hmong minister that if they let a shaman work in the medical center he could only give out herbs, and not perform any actual work with the spirits. At this point they asked the poor Hmong minister, ‘Now
you
never go to a shaman, do you?’ He was a Christian convert, he knew you cannot tell a lie, so he said, ‘Well, yes, I do.’ But then their reaction was so shocked that he said, ‘No, no, no, I’ve never been. I’ve just heard that
other
people go.’ What they didn’t realize was that—to my knowledge, at least—no Hmong is ever fully converted.”

In 1985, the International Rescue Committee assigned Dwight Conquergood, a young ethnographer with a special interest in shamanism and performance art, to design an environmental health program for Ban Vinai. He later wrote:

Unlike the other camp volunteers, who commuted from an expatriate enclave an hour away, Conquergood insisted on living in Ban Vinai, sharing the corner of a thatched hut with seven chickens and a pig. His first day in the camp, Conquergood noticed a Hmong woman sitting on a bench, singing folk songs. Her face was decorated with little blue moons and golden suns, which he recognized as stickers the camp clinic placed on medication bottles to inform illiterate patients whether the pills should be taken morning or night. The fact that Conquergood considered this a delightful example of creative costume design rather than an act of medical noncompliance suggests some of the reasons why the program he designed turned out to be the most (indeed, possibly the only) completely successful attempt at health care delivery Ban Vinai had ever seen.

Conquergood’s first challenge came after an outbreak of rabies among the camp dogs prompted a mass dog-vaccination campaign by the medical staff, during which the Ban Vinai inhabitants failed to bring in a single dog to be inoculated. Conquergood was asked to come up with a new campaign. He decided on a Rabies Parade, a procession led by three important characters from Hmong folktales—a tiger, a chicken, and a
dab—
dressed in homemade costumes. The cast, like its audience, was one hundred percent Hmong. As the parade snaked through the camp, the tiger danced and played the
qeej
, the
dab
sang and banged a drum, and the chicken (chosen for this crucial role because of its traditional powers of augury) explained the etiology of rabies through a bullhorn. The next morning, the vaccination stations were so besieged by dogs—dogs carried in their owners’ arms, dogs dragged on rope leashes, dogs rolled in on two-wheeled pushcarts—that the health workers could hardly inoculate them fast enough. Conquergood’s next production, a sanitation campaign in which a parade of children led by Mother Clean (a huge, insanely grinning figure on a bamboo frame) and the Garbage Troll (dressed in ragged clothes plastered with trash) sang songs about latrine use and refuse disposal, was equally well received.

During Conquergood’s five months in Ban Vinai, he himself was successfully treated with Hmong herbs for diarrhea and a gashed toe. When he contracted dengue fever (for which he also sought conventional medical treatment), a
txiv neeb
informed him that his homesick soul had wandered back to Chicago, and two chickens were sacrificed to expedite its return. Conquergood considered his relationship with the Hmong to be a form of barter, “a productive and mutually invigorating dialog, with neither side dominating or winning out.” In his opinion, the physicians and nurses at Ban Vinai failed to win the cooperation of the camp inhabitants because they considered the relationship one-sided, with the Westerners holding all the knowledge. As long as they persisted in this view, Conquergood believed that what the medical establishment was offering would continue to be rejected, since the Hmong would view it not as a gift but as a form of coercion.