The Spirit Catches You and You Fall Down

by Anne Fadiman

  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 time-consuming 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-in-law, 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.