The Spirit Catches You and You Fall Down (32 page)

Blia was the executive director of Lao Family Community, a mutual-assistance organization that helped Merced’s Hmong community negotiate the public-assistance labyrinth, apply for job training, resolve community conflicts, and keep abreast of news from Laos and Thailand.
^*
It was quartered in an old truck depot near the Kmart. Signs on the wall, next to Hmong-language handouts on fair housing laws and disability insurance, said
PLEASE HELP YOURSELF OUT
and
YOU MAY WANTED NEWS
. The Hmong community might not always meet the expectations of the American community, but it certainly knew how to run itself. Blia once drew me a flowchart—which
was
Cartesian—delineating how his organization worked. “At the top is the president and advisory board of eight,” he explained. “Then eleven Board of Director. Then seventeen district leaders. Then our 6,000 members. Let us say we need a hundred dollars to help out person who will be evicted. The seventeen district leaders carry the news, and everyone donate five cents or ten cents. Tomorrow we get that money. Or if one person die, tomorrow money will flow back to help that family. If there is change in welfare rules, we get out information the same way. If someone have problem with their child, we can solve problem inside Hmong community before it gets to the police. This way, 6,000 people we can serve with four or five people working in our office. No problem.”

No problem, that is, if those four or five people had no private life whatsoever. Blia’s eyes were often puffed and bloodshot from lack of sleep. Once he came to work after staying up all night mediating between the Merced police and a Hmong family who, while bringing a sacrificed pig home from Fresno, had had a traffic accident that distributed parts of the pig across the northbound lanes of Highway 99. He spent another night dealing with three teenaged girls who had run away from their homes in Fresno and stolen some money from an uncle in Merced. After persuading the uncle not to report the theft to the police, Blia took the girls home, woke his pregnant wife, and asked her to cook them a meal while they waited for their parents. The parents were not grateful. “They are angry because I should have acted more severely,” he told me. “I did not know until they arrive, but I am related to all those families by my clan and my wife’s clan. That is terrible! In our culture, this means I have same duty as parents to give the children a lesson. I should have spank them. I did not do my right duty.”

I saw Blia’s face light up only once, the time he described an ambitious housing scheme he had conceived. “I would like to share with you what we are dreaming of for the future,” he said. “Some of us hope to establish a Hmongtown, on the other side of Childs and Gerard Avenues. If we can make the financial package to buy this land, we can build two, three hundred houses. The Hmong house in Laos has a cross like an X at the top. We can do that here too. Each family can have a small garden. We can have our own Hmong shopping center. Our Hmongtown will boost morale because people will take good care of it. We will lose face if white person is seeing that Hmongtown is dirty. Having our own town will help Hmong people to become more economically self-sufficient. If this dream can come true, this will be very good for Hmong image!”

But when I came back to Merced a year later, no one had heard of Hmongtown, and Blia had resigned from his job at Lao Family Community and was selling insurance door-to-door. An American who knew him told me, “Blia is the most burned-out Hmong I ever saw.” He later moved to St. Paul, Minnesota, where he counsels Asian students and teaches a course on Hmong culture at Metropolitan State University. His telephone number is now unlisted.

Like Blia, Jonas Vangay translated, mediated, counseled, and interceded on twenty-four-hour call. At the end of his speech at the college and career conference I had attended, Jonas had told his teenaged audience, “Call me any time during the day or night,” and I knew that he would be taken literally. He had heavy family responsibilities as well. Explaining to me once why his family shared their home with two of his brothers, one of whom had nine children, he said, “I have another older brother who is very American now. He refuse to accept our brothers to live with him. He say, Here in the United States it is everyone for himself. I say,
I am Hmong
. For the Hmong, it is
never
everyone for himself.”

Jonas was thin and wiry and handsome, although, like almost every well-educated Hmong I knew, he always looked dog-tired. His real name was Vang Na. He had changed it to Jonas Vangay when he was living in France, because he thought that his résumé would garner more job offers if he did not sound so Asian. He now had two jobs, as a bilingual education specialist for the Merced school system and as a Hmong-language teacher at Merced College. I used to talk to him, using a mixture of English and French, in an elementary school classroom, seated again at a child’s desk. I never asked a question about Hmong history or linguistics that he was unable to answer.

Because, like Blia, Jonas was always busy but never turned me away, I decided to find a way to thank him for his help. Should I give him a gift? This seemed hazardous; he might feel he should reciprocate. Also, I didn’t trust my gift-selecting instincts. Once, in an attempt to bridge the miles between Laos, Merced, and New York City, I had given Foua and Nao Kao a small plastic globe, only to find that they believed the earth was flat. Should I invite Jonas and his wife to Bill Selvidge’s house? This might confuse them; there was no recognized Hmong category for platonic friends who shared living quarters.

“Why don’t you invite them to a nice restaurant?” suggested Bill.

So one evening, at 7:00 sharp, I sat waiting for Jonas in the lounge at a local steakhouse called the Cask ’n Cleaver. He had told me his wife could not join us because she had to take care of their children. I suspected he might also be embarrassed because her English was rudimentary.

The restaurant’s hostess, who wore a silver lamé top and a miniskirt, asked me whom I was waiting for.

“A Hmong man who has helped me with my work,” I said.

The hostess looked surprised. “I just moved to Merced,” she said, “and I don’t know nothing about the Hmongs. I just saw my first one today. My boyfriend said, That’s a Hmong. I said, How can you tell the difference? They look just like Chinamen to me. My boyfriend says they’re the worst drivers in the world. When he sees one, he goes clear ’cross town to stay away from them! I guess Hmongs don’t come to restaurants like this very often.” (
They sure don’t
, I thought.
And by the way, you’re not fit to polish Jonas’s boots
.)

Jonas arrived forty-five minutes late, saying he had been delayed by a student. I never knew if he had known from the start that he couldn’t make it at seven, and had agreed to the time because he thought that was what I wanted to hear, or whether (the story of his life) he had once again been pulled in two mutually exclusive directions. The dinner was not a success. Despite his five languages, Jonas had difficulty understanding the waitress, a teenager who spoke rapid Valley-Girl, and had to ask me several times what she was saying. Out of politeness—certainly not from lack of sophistication, since he had eaten at plenty of Parisian restaurants that would make the Cask ’n Cleaver look like McDonald’s—he ordered the cheapest entrée on the menu. Our conversation was formal and halting. Jonas was obviously relieved when we left. Afterwards, we stood in the parking lot, talking in the dark.

“You know, Anne,” he said quietly, “when I am with a Hmong or a French or an American person, I am always the one who laughs last at a joke. I am the chameleon animal. You can place me anyplace, and I will survive, but I will not
belong
. I must tell you that I do not really belong anywhere.”

Then Jonas drove home to his wife, his three children, his brothers, his brothers’ wives, his brothers’ ten children, and his ringing telephone.

Lia did not die, nor did she recover. Foua often dreamed that her daughter could walk and talk, but when she awoke, Lia lay curled next to her in bed, a slight, silent husk who hardly seemed big enough to contain her family’s load of memory, anger, confusion, and grief. She lay suspended in time, growing only a few inches, gaining little weight, always looking far younger than her age, while the Lee siblings who still lived at home—six athletic, bilingual children who moved with ease between the Hmong and the American worlds—grew up around her. Cheng joined the Marine Reserves and was called to serve in the Gulf War, but to Foua’s nearly hysterical relief, the war ended two days before his scheduled flight to Saudi Arabia. May went to Fresno State University, majoring in health science, a choice influenced by her childhood experiences, both positive and negative, as the ad hoc arbitrator between her parents and the medical establishment. Yer, a volleyball star who had won the award for Best Girl Athlete at Merced High School, joined May at Fresno State two years later, majoring in physical education. True became Merced High’s student body treasurer and president of its Youth Culture Club, a Hmong social and service organization with more than 200 members. Mai became a stand-out soccer player and was known as one of the most beautiful teenagers in Merced, a reputation that caused boys to fight over her and girls all too frequently to resent her. Pang grew from a harum-scarum toddler into a self-possessed schoolgirl with a flair for traditional Hmong dance. There were a few tremors as the Lee children passed through adolescence, but never the rifts that American families accept almost as a matter of course. “My parents are the coolest parents in the world,” True once wrote me. “We don’t have everything in the world, but we do have the closeness of us eight sisters, one brother, and our parents. This is the coolest family ever and I would never trade it for anything else in this world.”

Nao Kao gained weight and was troubled by high blood pressure. Foua felt tired much of the time. Seeing that their energies were waning, Jeanine Hilt urged the Lees to let Lia return to the Schelby Center for Special Education each day, not to educate her—that was a thing of the past—but to give her parents a few hours’ respite each day. Because of their persistent fear that Lia might be stolen from them again by the government, the Lees were reluctant at first, but because they trusted Jeanine, they eventually agreed.

Dee Korda, one of whose foster children was severely retarded and also attended Schelby, frequently saw Lia there, lying on her back with her hands strapped to blocks in order to prevent her fingers from stiffening into claws. She could hardly bear to look. The Kordas had all taken Lia’s neurological catastrophe hard. The entire family had gone through therapy at the Merced County Mental Health Department in order to deal with what Dee called “Lia being dead but alive.” At their counselor’s suggestion, the children—biological, foster, and adopted—drew pictures on butcher paper. “Wendy drew a mom and a baby, because Lia was with her mom,” said Dee. “Julie drew a rainbow with clouds and birds, because Lia didn’t have to cry anymore. Maria is real withdrawn, but when we told her about Lia she cried. Lia got through to her! She drew a broken heart with a jagged fence and an eye looking in from the outside. The heart was the sadness. The fence was the wall that Lia had gotten over by touching our lives. The eye was my eye, watching the sadness, with a tear that cried.”

In 1993, while she was vacationing at Disneyland, Jeanine Hilt had an acute asthma attack, went into respiratory failure, and suffered oxygen deprivation so severe that she lost all brain function: in other words, she developed hypoxic ischemic encephalopathy, exactly the same fate that had befallen Lia. She died three days later with her partner of eighteen years, Karen Marino, at her side. “When I heard Jenny was dead, my heart broke,” Foua told me. “I cried because Jenny had told me she wasn’t going to get married and she would never have any children of her own, so she would help me raise my children. But she died, so she couldn’t do that, and I felt I had lost my American daughter.”

Neil Ernst won the MCMC residency program’s first Faculty Teacher of the Year award. Peggy Philp became Merced’s County Health Officer, a post her father had held more than forty years earlier. They continued to share their pediatric practice as well as housework and child care, scrupulously negotiating what one of their Christmas letters described as “a blur of laundry, lunches, cleaning, patient care, newborn resuscitation, and resident teaching.” Their understanding of the Lees, and the Lees’ understanding of them, deepened significantly when they, too, experienced a child’s grave illness. During his last month of third grade, their elder son, Toby, was diagnosed with acute lymphocytic leukemia. When Neil tried to tell Dan Murphy about the diagnosis, he cried so hard he couldn’t talk. After one of Lia’s checkups, Neil wrote me:

Toby underwent three years of chemotherapy and achieved what seems to be a permanent remission. “Lia’s mother continues to occupy a special place in our thoughts,” wrote Neil in a later letter. “She always asks about Toby. Our contacts with her are very infrequent because her family provides excellent care for Lia, but they are special nonetheless.”

Since Lia’s brain death, whatever scant trust Foua and Nao Kao had once had in American medicine had shrunk almost to zero. (I say “almost” because Foua exempted Neil and Peggy.) When their daughter May broke her arm, and the doctors in the MCMC emergency room told them it needed a cast, Nao Kao marched her straight home, bathed her arm in herbs, and wrapped it in a poultice for a week. May’s arm regained its full strength. When a pot of boiling oil fell from the electric stove onto Foua’s skirt, setting it on fire and burning her right hip and leg, she sacrificed two chickens and a pig. When Foua got pregnant with her sixteenth child, and had an early miscarriage, she did nothing. When she got pregnant with her seventeenth child and had a complicated miscarriage in her fourth month, Nao Kao waited for three days, until she started to hemorrhage and fell unconscious to the living room floor, before he called an ambulance. He consented to her dilation and curettage only after strenuous—in fact, desperate—persuasion by the MCMC resident on obstetric rotation. Nao Kao also sacrificed a pig while Foua was in the hospital and a second pig after she returned home.

Before she was readmitted to Schelby, Lia was routinely vaccinated against diphtheria, pertussis, and tetanus. At about the same time, she started to develop occasional seizurelike twitches. Because they were brief, infrequent, and benign—and also, perhaps, because he had learned from bitter experience—Neil decided not to prescribe anticonvulsants. Foua and Nao Kao were certain that the shots had caused the twitches, and they told Neil that they did not want Lia to be immunized ever again, for anything.

Dan Murphy, who became the director of MCMC’s Family Practice Residency Program, once told me that when you fail one Hmong patient, you fail the whole community. I could see that this was true. Who knew how many Hmong families were giving the hospital a wide berth because they didn’t want their children to end up like the second-youngest Lee daughter? Everyone in Merced’s Lee and Yang clans knew what had happened to Lia (those bad doctors!), just as everyone on the pediatric floor at MCMC knew what had happened to Lia (those bad parents!). Lia’s case had confirmed the Hmong community’s worst prejudices about the medical profession and the medical community’s worst prejudices about the Hmong.

At the family practice clinic, the staff continued to marvel at the quality of care the Lees provided to their clean, sweet-smelling, well-groomed child. But at the hospital next door, where the nurses had had no contact with Lia since 1986, the case metastasized into a mass of complaints that grew angrier with each passing year. Why had the Lees been so ungrateful for their daughter’s free medical care? (Neil—who did not share the nurses’ resentment—once calculated that, over the years, Lia had cost the United States government about $250,000, not counting the salaries of her doctors, nurses, and social workers.) Why had the Lees always insisted on doing everything
their
way? Why—this was still the worst sin—had the Lees been noncompliant? As Sharon Yates, a nurse’s aide, told me, “If only the parents had given Lia the medicine, she wouldn’t be like this. I bet when she came back from that foster home, they just didn’t give her any medicine.”

But I knew that when she returned from foster care, Foua and Nao Kao
had
given Lia her medicine—4 ccs of Depakene, three times a day—exactly as prescribed. Hoping to clear up some questions about Lia’s anticonvulsants, I went to Fresno to talk with Terry Hutchison, the pediatric neurologist who had overseen her care at Valley Children’s Hospital. I had noticed that in one of his discharge notes, written nine months before her neurological crisis, he had described Lia as “a very pretty Hmong child” and her parents as “very interested and very good with Lia.” I had never seen phrases like that in her MCMC chart.

Bill Selvidge had told me that Dr. Hutchison was “a known eccentric,” beloved by his residents for his empathy but dreaded for his insistence on doing rounds at 4:00 a.m. He had an exiguous crewcut and on the day I met him was wearing a necktie decorated with a large bright-yellow giraffe. A sign in the hall outside his office, hung at toddler eye level, read:

KIDS ZONE
ENTER WITH CARE AND LOVE

When I asked him about the relationship between Lia’s medications and her final seizure, he said, “Medications probably had nothing to do with it.”

“Huh?” I said.

“Lia’s brain was destroyed by septic shock, which was caused by the
Pseudomonas aeruginosa
bacillus in her blood. I don’t know how Lia got it and I will never know. What I do know is that the septic shock caused the seizures, not the other way around. The fact that she had a preexisting seizure disorder probably made the status epilepticus worse or easier to start or whatever, but the seizures were incidental and not important. If Lia had not had seizures, she would have presented in a coma and shock, and the outcome would probably have been the same, except that her problem might have been more easily recognized. It was too late by the time she got to Valley Children’s. It was probably too late by the time she got to MCMC.”

“Did her parents’ past noncompliance have anything to do with it?”

“Absolutely nothing. The only influence that medications could have had is that the Depakene we prescribed might have compromised her immune system and made her more susceptible to the
Pseudomonas
.” (Depakene occasionally causes a drop in white blood cells that can hamper the body’s ability to fight infection.) “I still believe Depakene was the drug of choice, and I would prescribe it again. But, in fact, if the family was giving her the Depakene as instructed, it is conceivable that by following our instructions, they set her up for septic shock.”

“Lia’s parents think that the problem was caused by too much medicine.”

“Well,” said Dr. Hutchison, “that may not be too far from the truth.”

I stared at him.

“Go back to Merced,” he said, “and tell all those people at MCMC that the family didn’t do this to the kid. We did.”

Driving back to Merced, I was in a state of shock myself. I had known about Lia’s sepsis, but I had always assumed that her seizure disorder had been the root of the problem.
The Lees were right after all
, I thought.
Lia’s medicine did make her sick!

That night I told Neil and Peggy what Dr. Hutchison had said. As usual, their desire to ferret out the truth outweighed their desire—if indeed they had one—to defend their reputation for infallibility. They immediately asked for my photocopy of Lia’s medical chart, and they sat together on Bill Selvidge’s sofa, combing Volume 5 for evidence, overlooked during the crisis, that Lia might already have been septic at MCMC. Murmuring to each other in their shared secret language (“calcium 3.2,” “platelets 29,000,” “hemoglobin 8.4”), they might have been—in fact, were—a pair of lovers exchanging a set of emotionally charged intimacies.

“I always thought Lia got septic down at Children’s when they put all those invasive lines in,” said Peggy. “But maybe not. There are some signs here.”

“I did too,” said Neil. “If I’d thought she was septic here at MCMC, I would have done a lumbar puncture. I didn’t start her on antibiotics because every single time Lia had come in before that, she was not septic. Every other time, the problem was her seizure disorder, and this was obviously the worst seizure of her life. I stabilized her, I arranged for her transport, and then I went home before all the lab results were back.” He didn’t sound defensive. He sounded curious.

After Neil and Peggy went home, I asked Bill Selvidge whether he thought Neil had made a mistake in not recognizing and treating Lia’s sepsis, even though Dr. Hutchison believed that her fate was probably sealed before she arrived in the MCMC emergency room—and even though the increasing severity of her epilepsy might eventually have led to serious brain damage if sepsis had never entered the picture.

“Neil leaves no stone unturned,” said Bill. “If Neil made a mistake, it’s because every physician makes mistakes. If it had been a brand-new kid walking off the street, I guarantee you Neil would have done a septic workup and he would have caught it. But this was Lia.
No one
at MCMC would have noticed anything but her seizures. Lia
was
her seizures.”

To MCMC’s residents, Lia continued to be her seizures—the memory of those terrifying nights in the emergency room that had taught them how to intubate or start IVs or perform venous cutdowns. They always spoke of Lia in the past tense. In fact, Neil and Peggy themselves frequently referred to “Lia’s demise,” or “what may have killed Lia” or “the reason Lia died.” Dr. Hutchison did the same thing. He had asked me, “Was Lia with the foster parents when she died?” And although I reminded him that Lia was alive, five minutes later he said, “Noncompliance had nothing to do with her death.” It wasn’t just absentmindedness. It was an admission of defeat. Lia was dead to her physicians (in a way, for example, that she was never dead to her social workers) because medicine had once made extravagant claims on her behalf and had had to renounce them.