The Spirit Catches You and You Fall Down (28 page)

The anthropologist George M. Scott, Jr., has written that in Laos,

Foua and Nao Kao were fairly sure, but not certain, that transgressions on the part of American doctors, not on their own part, were responsible for Lia’s condition. But no expiatory motivation was needed. They showered Lia with affection because they could not imagine doing otherwise. They had always thought of her as an anointed one, a princess. Now, constantly attended by her parents and siblings, she had assumed a position in the family that was, if anything, even more regal. She was a central stillness around which the life of the family condensed. If she sat in her wheelchair, someone was always at her elbow; if she was strapped into a
nyias
, her bearer, whether it was her mother, her father, or one of her older sisters, did a constant little swaying dance to soothe her. More photographs of her hung on the walls than of any of her eight siblings. For years, the schedule Jeanine had once written for her—“Wake-up,” “Meds,” “Leave for School,” “Playtime”—continued to hang there too, even though she no longer took medicines, went to school, or played. Whether she still woke up in the morning was a question of semantics.

Lia was the only Lee child who had birthday parties. Every July 19, the sidewalk outside the East 12th Street apartment overflowed with relatives and Hmong children. Jeanine Hilt brought Frisbees, beach balls, and water pistols. Foua served Hmong eggrolls stuffed with minced pork and onion; steamed bananas with rice; chickens that had been sacrificed that morning, and their skulls and tongues examined for divinatory signs, before they were stewed; and Doritos. There was always an American birthday cake. Jeanine lit the candles and cut the first piece. The guest of honor, of course, could not blow out her candles or eat her cake. She sat in her wheelchair, immobile and impassive, while the children, who had learned a standard repertoire of American songs in school, sang “Happy Birthday.”

Lia was still a beautiful child. She was nothing like the patients in vegetative states whom I had seen in hospitals, pasty-skinned carcasses with slack mouths, hair like straw, bodies that smelled of urine even after they were bathed. Lia’s black hair was still shiny, her skin was soft and fine, her lips were still pink and shaped like a Cupid’s bow. She smelled delicious. It therefore never seemed strange to me that her family treated her as one would an especially winsome baby: a diapered, bottle-fed, fussing baby who just happened to be three feet tall. Foua cuddled her, stroked her, rocked her, bounced her, sang to her, nuzzled her neck, inhaled her hair, played with her fingers, and made raspberry sounds against her belly. There were also times when Lia seemed more like a pet—a golden retriever, perhaps, with strokable fur and a tractable disposition. Her younger sister Pang liked to give her bear hugs, tug her ears, and then, joined by Mai and True, lie on top of her in a heap: three squirming, giggling children and one silent one.

In Laos, Foua had bathed her children on the dirt floor, using a small bowl to pour the stream water that she had warmed on the fire. Now she bathed Lia in the porcelain tub every day—on hot days, twice. “I usually get in with her,” she said, “because by the time I’m done I’m all wet anyway.” After the bath, she bent and extended Lia’s arms and legs, as a child would flex the limbs of a Barbie doll, in a series of range-of-motion exercises, taught her by the health department, that were intended to forestall permanent contractures. She fed Lia by spoon or from a six-ounce bottle with a broad, flat, easy-to-suck nipple designed for babies with cleft palates. A resident’s note from the MCMC clinic stated that “parents feed her formula + rice cereal.” In fact, Lia also ate pork and chicken that her mother had ground to a fine consistency with the hand-carved mortar and pestle she had brought from Laos. Sometimes Foua simply pre-chewed the chicken, like a mother bird, and stuffed it into Lia’s mouth. Every day Foua boiled quantities of a spinachlike vegetable called
zaub
, which she grew specially for Lia in the parking lot, and fed her the broth. Lia usually straddled Foua’s lap, her long legs sticking out on either side, while Foua, after putting her lips to the food to make sure it wasn’t too hot, coaxed tiny bites into her mouth. She always wiped Lia’s drool with her hand rather than with a napkin or a towel. “It takes a long time to eat,” she told me once, as she fed Lia rice. “You have to open Lia’s mouth to look inside, because if there is already rice in there and you put some more in, she might vomit it back out. You have to hold your hand in back of her neck all the time or she can’t swallow.” Then she laughed and kissed Lia’s ricey mouth.

Sometimes I thought: this is not so terrible. Lia lived at home, not in a chronic care facility. She was a love object, not a pariah. The Hmong community accepted her without reservation. Her mother was not suicidal, as she had been after Lia was placed in foster care. It was true that Foua and Nao Kao sometimes slighted her siblings, especially Pang, who had never been allowed to assume her rightful place as the youngest and most coddled member of the family. When Pang was barely out of toddlerhood, she zoomed in and out of the apartment unsupervised, playing with plastic bags and, on occasion, with a large butcher knife. Still, none of the Lees, even the teenagers, ever seemed embarrassed by Lia, as most of the American children I knew might be. Because Lia’s continual epileptic crises were over, May, as the eldest daughter living at home, had been largely relieved of the pressures of serving as her parents’ medical interpreter. “I had to go with my parent to the hospital to translate,” she wrote in her eighth-grade autobiography, speaking of the year after Lia’s return from foster care. “I never had my way out cause most of my cousin who my parent needed the most are always busy doing this and that. I was like their translater everywhere they go.” Carrying her sister in a
nyias
, feeding her formula, and doing the family’s shopping at the Save Mart on J Street were far lighter responsibilities.

But whenever I began to be lulled by this relatively rosy picture, I was drawn up short by an explosion of rage from Nao Kao (“My child is lost because of those doctors!”) or, more frequently, by a sudden seepage of grief from Foua. One minute Foua would be laughing, and the next she would be in tears. She would go for weeks without a word of complaint, and then exclaim, “Lia is so heavy! She is so hard to carry! Other people see nice places but I never can.” She went for two years without sewing any
paj ntaub
except Lia’s giant
nyias
. “Lia is too sick,” she said, “and I am too sad. I am so busy with Lia that I don’t know anything except being alive.” Once I saw her rocking back and forth on her haunches, keening. When I asked her what was the matter, she just said, “I love Lia too much.”

A half-finished bottle of Depakene syrup, which was no longer prescribed for Lia and which Neil and Peggy assumed had been thrown out long ago, continued to sit on a kitchen shelf for years. It was not there to be used; it was there because the American doctors had once considered it priceless, and discarding it would have been like tossing out a pile of foreign coins that were no longer negotiable but had not altogether shed their aura of value. Foua and Nao Kao treated Lia with what they called “Hmong medicines.” “We can’t give her any kind of medicine from the hospital,” Nao Kao explained, “because if we do, she gets really tense and her body twists into some kind of tight knot.” They fed her teas made from powdered roots, imported from Thailand, which they bought at a Hmong-owned market, and from herbs they grew for her in the parking lot. A stainless-steel mixing bowl, filled with sacred water and covered with two pieces of fringed paper, hung by a length of twine from the ceiling of their bedroom. A
txiv neeb
had placed it there as a lure for Lia’s errant soul. About twice a year, or more often if they could afford it, a
txiv neeb
came to their apartment to perform a pig sacrifice. For several weeks afterwards, Lia wore soul-binding strings around her wrists.

Because the detested anticonvulsants were no longer prescribed, and because Foua’s feelings for Lia’s doctors had become almost fond since the day she and Neil had hugged, they continued to carry Lia about once a year to the MCMC clinic, though not to the hospital next door. Lia’s problems—constipation, conjunctivitis, pharyngitis—could now be dealt with on an outpatient basis. When Lia missed an appointment, the clinic’s computer, fixed in its imperturbable bureaucratic groove, sent her this reminder:

Lia never called.

The Lees’ most frequent encounters with Merced’s medical establishment were now the checkups—first weekly, then monthly, then two or three times a year—performed by a public health nurse who, like a
txiv neeb
, made house calls. The nurse was named Martin Kilgore. Martin was a large, kind, eccentric man who was undoubtedly the only employee of the Merced County Health Department with an all-over tan from vacationing at a nudist camp. His politics were liberal, his I.Q. (as he once confided with a self-deprecating grin) was 150, and his conversation was peppered with references to classical literature. He referred to Lia’s
daimon
and her
Moira
as often as to her hypoxic ischemic encephalopathy. Once he compared the relationship between the Lees and their medical providers to the myth of Sisyphus, the Corinthian king who attempted to cheat Death by placing him in fetters. I mentioned Martin’s analogy to Neil. He had never heard of Sisyphus, but when I described how the old reprobate had been condemned to roll a boulder up a hill over and over again, only to have it roll back down just before he reached the summit, Neil said, “That’s perfect!” (Later it occurred to me that although Neil instinctively identified with Sisyphus, the Lees would undoubtedly have maintained that
they
were the ones who had done the boulder-pushing.)

Martin had first met Lia and her family in the spring of 1985, before she was placed in foster care. He had been sent to the Lee home to determine whether her parents were giving her the proper amounts of Tegretol and phenobarbital. (They weren’t.) Not knowing what he was in for, he wrote a note to MCMC that concluded: “Thank you for this interesting referral.” The sheaf of impeccably typed, formally phrased letters that he had since dispatched to Neil and Peggy documented, year by year, his own gallant efforts to roll the boulder up the hill, and the boulder’s repeated descents. His main concern was now Lia’s constipation, part of a generalized gastrointestinal slowdown caused by her neurological impairment. In February of 1988, when Lia’s vegetative state had lasted for about a year, he informed Peggy that “Lia continues to have impacted stools on a weekly basis.” His next sentence was a model of reportorial tact: “The mother states she is using Metamucil assiduously but their bottle is full and covered with dust.”

Martin once invited me to accompany him on one of his home visits. I was curious to see how he and the Lees dealt with each other, since, unlike most of Merced’s medical community, Martin was a vocal Hmong partisan. He had a clearer grasp of the Hmong role in the war in Laos than anyone else I met in Merced, and had written dozens of letters to local newspapers castigating the readers for their intolerance. (One reader had been so angry he had threatened to blow Martin away with a shotgun, causing Martin, for reasons more alphabetical than literary, to change his listing in the Merced telephone directory to Joyce Kilmer.) Martin didn’t dislike the Lees, or at least preferred them to some of his Caucasian clients, whose parenting skills he described as inferior to those of chimpanzees. He had so strongly disagreed with Neil’s decision to place Lia with a foster family that, jettisoning all professional objectivity, he had once told Nao Kao, “Mr. Lee, in America we get lawyers when people do things like that.” I figured that if anyone could communicate with the Lees, it would be Martin.

When Martin and his interpreter Koua Her arrived at the Lees’ apartment, Foua was kneeling on the floor, feeding Lia a bottle of water, and Nao Kao was sitting next to her with Pang on his lap.

“HELLO MR. LEE!” Martin boomed. Nao Kao focused on the wall-to-wall carpet and said nothing.

Martin lowered himself to the floor. “Now, Mr. Lee,” he said, “what is your daughter eating? Is it mostly liquid?” I realized, with surprise, that the Lees had never told him about the chicken and pork Foua mashed with her mortar and pestle. Koua Her, a small, conscientious, self-effacing man, translated Martin’s question in a scarcely audible voice, as he translated—or attempted to translate—all of Martin’s subsequent questions from English to Hmong, and the Lees’ answers from Hmong to English.

Foua mumbled something. “She says it is very soft food,” said Koua.

“Well,” said Martin, “empirically Lia is not gaining or losing weight. I can tell that whatever they are doing nutritionally is definitely all right.”

Without explaining what he was doing, he started to tickle Lia’s feet. He noted her Babinski reflex, an extension of the big toe that signifies damage to the central nervous system. He then put his stethoscope against her abdomen. Lia started to howl like a wolf. Foua put her face next to Lia’s and crooned, “Tch, tch, tch.”

“I am listening for bowel sounds,” said Martin. “I hardly hear any bowel sounds so now I am going to listen to her chest. Her lungs are good. Now, the last time I was here, I talked about why it would be nice if we could take her temperature every day, just so we could find out if there is a problem coming up. Do they remember that?”