The Spirit Catches You and You Fall Down (27 page)

I was able to see the whole cycle of adjustment to American life start all over again during one of my visits to Merced. When I arrived at the Lees’ apartment, I was surprised to find it crammed with people I’d never met before. These turned out to be a cousin of Nao Kao’s named Joua Chai Lee, his wife, Yeng Lor, and their nine children, who ranged in age from eight months to twenty-five years. They had arrived from Thailand two weeks earlier, carrying one piece of luggage for all eleven of them. In it were packed some clothes, a bag of rice, and, because Joua is a
txiv neeb
’s assistant, a set of rattles, a drum, and a pair of divinatory water-buffalo horns. The cousins were staying with Foua and Nao Kao until they found a place of their own. The two families had not seen each other in more than a decade, and there was a festive atmosphere in the little apartment, with small children dashing around in their new American sneakers and the four barefooted adults frequently throwing back their heads and laughing. Joua said to me, via May Ying’s translation, “Even though there are a lot of us, you can spend the night here too.” May Ying explained to me later that Joua didn’t really expect me to lie down on the floor with twenty of his relatives. It was simply his way, even though he was in a strange country where he owned almost nothing, of extending a face-saving bit of Hmong hospitality.

I asked Joua what he thought of America. “It is really nice but it is different,” he said. “It is very flat. You cannot tell one place from another. There are many things I have not seen before, like that”—a light switch—”and that”—a telephone—”and that”—an air conditioner. “Yesterday our relatives took us somewhere in a car and I saw a lady and I thought she was real but she was fake.” This turned out to have been a mannequin at the Merced Mall. “I couldn’t stop laughing all the way home,” he said. And remembering how funny his mistake had been, he started to laugh again.

Then I asked Joua what he hoped for his family’s future here. “I will work if I can,” he said, “but I think I probably cannot. As old as I am, I think I will not be able to learn one word of English. If my children put a heart to it, they will be able to learn English and get really smart. But as for myself, I have no hope.”

When I met Nao Kao’s cousin and his family at the Lees’ apartment, there was, of course, one child who was not playing games with her newfound cousins or sitting on the doorstep and watching the cars drive down East 12th Street in the spring twilight, the hour the Lees still called “pig-feeding time.” Lia was on her mother’s back, swaddled in a bright pink
nyias
, an apron-shaped baby carrier that Foua had embroidered with black, yellow, and green cross-stitching and ornamented with eighteen fuzzy pink pom-poms. It was perhaps the largest
nyias
in Hmong history, since Lia was more than three feet tall and weighed thirty-six pounds. Foua preferred it to the pediatric wheelchair, provided by the Merced County Health Department, that sat in a corner of the living room. A shawl was wrapped around them both, and from a distance, because Lia’s body lay stiff and motionless against her mother’s, they looked like a single person.

Lia was almost seven. For more than two years, her doctors had been waiting for her to die, and her parents had been confounding them with their ability to keep her alive. Although Lia was not dead, she was quadriplegic, spastic, incontinent, and incapable of purposeful movement. Her condition was termed a “persistent vegetative state.” Most of the time her arms were drawn up tightly against her chest and her fists were clenched, a sign of cerebral motor damage. Sometimes her legs trembled. Sometimes her head nodded, not in jerks but slowly, as if she were assenting to a question underwater. Sometimes she moaned or whimpered. She continued to breathe, swallow, sleep, wake, sneeze, snore, grunt, and cry, because those functions were governed by her unimpaired brain stem, but she had no self-aware mental activity, a function governed by the forebrain. Her most conspicuously aberrant feature was her eyes, which, although clear, sometimes stared blankly and sometimes darted to one side as if she were frightened. Looking at her, I could not help feeling that something was missing beyond the neurotransmissive capabilities of her cerebral cortex, and that her parents’ name for it—her
plig
, or soul—was as good a term as any.

I once said to Terry Hutchison, Lia’s neurologist at Valley Children’s Hospital in Fresno, “But she must have
some
consciousness. She can cry, and when her mother picks her up and rocks her, she stops.” Dr. Hutchison replied, “Well, you take a Venus flytrap. Does it decide to snap at a fly that is walking on its pod, or does it just do it? I think it just does it. Lia is like a flytrap. It’s all reflex. Nevertheless, I do believe, even though there is no way you can ask people like that how they feel, that it is at least theoretically possible for her to have no thoughts, no memories, no conscious life, and yet respond to her mother’s touch.” I asked Lia’s parents what they thought their daughter could sense. Nao Kao said, “When we hold her, she knows it and is smiling.” Foua said, “Sometimes when I call her, it seems that she does recognize me, but I don’t really know, because it seems that Lia cannot see me. My baby hasn’t done anything bad. She is a good girl, but because she is hurt like this it is just as if she is dead. Every day now, she cannot see me.”

On December 9, 1986, Lia had returned home from MCMC with a fever of 104°, an irregular breathing pattern, an inability to cough up or swallow her own secretions, and a prognosis of imminent death. Within days, her temperature was normal, her breathing was regular, and her swallowing and gag reflexes were back. Scratching their heads, her doctors attributed these improvements to reduced swelling in the medulla and hypothalamus. Her parents attributed them to the herbal infusion with which they had bathed their daughter when she first came home, and for many days thereafter. “They’d put a shower curtain on the living room floor and lay Lia on it,” recalled Jeanine Hilt. “Foua would drench her in this tea remedy that she had cooked up, just sponging it all over her body and her hair and her head. It was really quite a soothing thing. A loving thing.”

During Lia’s first days home, Jeanine had visited the Lees every day. It was because of her that Foua and Nao Kao left the hated nasogastric tube—which they had been directed to use for the remainder of Lia’s life—in place for an entire week. Under Jeanine’s guidance, they poured two ounces of infant formula down the tube every two hours, checking its placement by injecting air through a syringe and listening for the bubbles through a stethoscope. “It was really slow,” recalled Nao Kao, “and I didn’t really know how to use it. That tube had two plastic things, and if the food gets stuck in there, then you can’t feed anymore.” Finally they yanked it out of Lia’s nose and started squeezing formula into her mouth with a baby bottle. This worked perfectly, even though the doctors had predicted that without the tube Lia would choke to death. The only problem was that because the prescribed tube was no longer being used, Medi-Cal refused to pay for the formula, so Neil and Peggy started giving the family entire cases of Similac with Iron, intended to be dispensed as free samples to new mothers.

Medi-Cal was willing to pay for a wheelchair and a suction machine, but it drew the line at a pediatric hospital bed. This bed, which the Lees had never requested, became the focal point toward which all of Jeanine’s grief and rage about Lia’s condition converged. “When Medi-Cal said they wouldn’t pay for it, it just pissed me off to the max,” she said. “Some all-powerful doctor in the regional bureau said the Hmong sleep on the floor anyway so they didn’t need it. He was a real racist and I told him so. I just went crazy. Berserk. I started calling a million and one places. Finally I got a medical supply company I found in the Yellow Pages to provide a brand-new bed and deliver it to the Lees’ home, completely free.” Jeanine never found out that Lia did not sleep in this bed, which stood for years next to her parents’ double bed, taking up space in their tiny bedroom. “Lia always sleeps with us,” Foua told me. “She is the only child who sleeps in our bed. I hold her during the night and we pat her feet all night long because we love her so much. If you don’t pat Lia on her foot or her knee, she cries a lot.”

The first time Lia returned to the clinic for a checkup, Neil was on duty. During her last stay at MCMC, he had so successfully distanced himself from her case that although he had seen Lia, he had not seen Foua and Nao Kao since their daughter’s return from Fresno. Years later, when he looked through Lia’s medical chart, he paused for a long time when he came to the clinic note from that visit. I wondered what he found so emotionally compelling about “Today, Lia is afebrile with a temperature of 98.3° axillary, weight 42 pounds, and hemoglobin is 11.” He cleared his throat. “That first visit was a very significant visit for me,” he said. “It was very emotional. I remember Jeanine Hilt was in the room too. Also an interpreter. I remember talking to the mother and saying it was very hard for me to see Lia the way she was, to actually be in the same room with her, and that what had happened was something I had always feared, and that I was very sorry. And what absolutely blew me away is that I, well, I was afraid they were going to blame me for what happened, but the mother showed me compassion. She understood—somehow she got the—she, well”—Neil was scrabbling uncomfortably for words, but he was determined to forge ahead—“well, I think part of it was that I was crying. What she did was, she thanked me. And she hugged me. And I hugged her.” He cleared his throat again. “So anyway.”

When I asked Foua about that encounter, all she said was, “Lia’s doctor really hurt for her.” Nao Kao scowled and remained silent. He had never stopped being angry at MCMC and everyone who worked there. Foua, temperamentally more accommodating than her husband, had managed to divert all her blame to the doctors in Fresno who had given Lia “too much medicine,” thereby partially exonerating Neil and Peggy. In her eyes, “the husband and wife doctors” were guilty not of the mortal sin of destroying her daughter but of the lesser sin—a sin of omission—of going on vacation and leaving Lia in the wrong hands.

As the months passed, Lia became, in some cockeyed sense, a radiantly vital child. Although every page of her chart contained the notation “Hypoxic Ischemic Encephalopathy, Static”—irreparable brain damage—one clinic report also noted:

In other words, Lia’s brain damage had cured her epilepsy, and, over time, as she grew taller—or rather, longer, since she never stood again—her obligatory soft-food diet cured her obesity. “She was real healthy,” said Peggy, with jaunty sarcasm. “She was the healthiest she’d ever been. She was just perfect. A perfect vegetable.”

Suddenly, Lia was, as Bill Selvidge once told me dryly, “just the sort of patient nurses like.” She had metamorphosed from a hyperactive child with a frightening seizure disorder and inaccessible veins into an inert, uncomplaining body who would probably never need another IV. Simultaneously, in the eyes of the family practice staff, her parents were miraculously transformed from child abusers to model caregivers. Teresa Callahan, a resident who had seen Lia during both phases, told me, “Her mom and dad must have taken wonderful care of her because she grew so much. Most kids that are that severely gorked sort of shrivel up and turn into a bag of bones. I’ve seen seventeen-year-olds who were the size of four-year-olds.” Neil said, “Whenever they brought her into the clinic in that baby carrier, Lia was always well-groomed, well-dressed, and immaculate. Just
immaculate
. It was very impressive.” Peggy added, “They did a better job than most white families. Most white families would institutionalize her in a second.”

Foua and Nao Kao could never figure out why the clinic staff treated them so much better than the hospital staff ever had. From their point of view, their daughter had changed utterly, but their behavior as parents had not changed in the slightest. The only explanation Nao Kao could come up with was, “Lia doesn’t go to the bathroom very often, so she is clean and that is why they like her.” (When I heard him ascribe Lia’s newfound popularity to her constipation, I was reminded of the comment he had once made when I told him I would like to visit Laos some day. Having taken due note of America’s obsession with technology and hygiene, he said, “You wouldn’t like it. There are no cars. But you would think Chiang Mai in Thailand is very nice.” When I asked why, he said, “Because it has a lot of garbage collectors.”)

Now that anticonvulsants were no longer prescribed and compliance was no longer an issue, Merced’s doctors, nurses, CPS workers, public health workers, and juvenile court officers—the clamorous army of authority figures who had been telling the Lees for four years that they were not taking good care of their daughter—suddenly fell silent. On March 5, 1987, the Lees’ probationary status as Lia’s guardians, which had been in effect since their daughter was released from foster care, was lifted. “In the Matter of LIA LEE, a Dependent Child of the Juvenile Court,” the Superior Court of the State of California for the County of Merced declared:

Foua and Nao Kao never trusted this document, which of course they could not read and which in any case would be almost impossible to render in Hmong. They continued to fear that their daughter might once again be made government property. For several years, Foua, who never let herself forget that she had been visiting relatives on the day Lia had been removed to foster care, stayed with her twenty-four hours a day to make sure she was not snatched by the “police.” “If we allow,” said Nao Kao, “they probably would take her away again, but we just love Lia too much and we don’t want anybody to take her. My wife watches Lia every day, so they cannot take her. My wife would not let them.”