The Spirit Catches You and You Fall Down (8 page)

When Lia was two, a consulting neurologist recommended that she be started on Tegretol, continued on Dilantin, and gradually weaned off phenobarbital because it was contributing to, or even entirely causing, her hyperactivity. Unfortunately, the Lees had now decided that they liked phenobarbital, disliked Dilantin, and were ambivalent about Tegretol. A visiting nurse once found Lia dazed and staggering after receiving an overdose of phenobarbital (which, though it can raise some patients’ energy levels when taken in normal doses, has the opposite effect when taken to excess). The next day, when Lia was brought to the pediatric clinic, the resident on duty—who happened to be Gary Thueson, the doctor who had delivered her—noted, “Apparently parents felt if phenobarb was good 2x is better so double dosed yesterday.” On July 20, 1984, Neil Ernst wrote in a Pediatric Clinic Note (a copy of which he sent to the Health Department):

On rereading this note many years later, Neil said he could still remember the rage he had felt when he wrote it. He and Peggy, who are both aware, and even proud, of their joint reputation for glacial unflappability, couldn’t remember another case that had made them feel this way. “I remember wanting to shake the parents so that they would understand,” said Peggy. A handful of times, Neil gave Foua a hug while Lia was seizing, but most of the time, while Lia was between the ages of eighteen months and three and a half years, he was too angry to feel much sympathy toward either of her parents. “The best thing I could have given Lia’s mother was compassion, and I wasn’t giving her any and I knew that I wasn’t giving her any,” he said. “There was just too much aggravation. It was like banging your head against a wall constantly and not making any headway. There was the frustration of the nighttime calls and the length of time it took and the amount of energy and sorrow and lack of control. I mean, every time I saw Lia I would just, you know, it was like—ohhhhh, you would just get so frustrated! When she came to the emergency room in status there would be sort of like a very precipitous peak of anger, but it was quickly followed by the fear of having to take care of a horribly sick child who it was very difficult to put an IV in.” Peggy added, “Some of the anger came from that. From our own fear.”

It was hard to work so hard and not receive a single word of thanks—in fact, to have their efforts invariably greeted with resentment. Neil and Peggy never dwelled on the financial aspects of the case, since one of the reasons they chose to work in Merced was, in Neil’s words, “to serve underserved people regardless of their form of payment.” But it was an undeniable fact that Lia’s family had never paid a penny for the hundreds of hours of care she had received—and yet failed utterly to appreciate the generosity of Medi-Cal and of Neil and Peggy’s services, which, because of the low level of reimbursements, were, in effect, partially voluntary. (No other pediatricians practicing in Merced at that time were willing to accept Medi-Cal patients.) The Lees also never showed their doctors the kind of deference reflexively displayed by even their most uncooperative American patients. It was as if Neil and Peggy’s four years of medical school, their three years of residency, their awards, their publications, their telephone consultations with neurologists, even the hours they spent in the Merced Public Library reading old
National Geographic
articles about the Hmong, all counted for nothing. The worst aspect of the case was that as conscientious physicians and dedicated parents, they found it agonizing to watch Lia, as it would have been for them to watch any child, fail to receive the treatment they believed might help her lead a normal life. And it seemed as if the situation would never end. However frustrated they were, they never considered abandoning the case. Unless Lia died, they could see themselves driving to the emergency room in the middle of the night until she was grown up and had graduated to the care of an internist, with whom they already felt an anticipatory bond of sympathy.

In June of 1984, Neil and Peggy found out that Foua was pregnant again. They were appalled. This baby would be number fifteen; eight had survived. Foua’s age was unknown—it was listed on her maternity registration form as fifty-eight, a number no one at MCMC seems to have questioned—but Neil and Peggy had assumed that she had already gone through menopause. “When we found out she was having another, we said, how could this happen?” Neil recalled. “This must have been the last egg that was possibly fertilizable, and it got fertilized. We were just dreading how this baby might turn out, that it might have Down syndrome and heart problems and that we were going to have to deal with
two
sick kids in this family.
Just
what we needed. Lia’s mom refused to have an amnio. Not that she would have aborted anyway.” Foua also vehemently refused a tubal ligation, a sterilizing procedure urged by a nurse who knew Lia and feared another Lee child might be born with epilepsy. She continued to breast-feed Lia throughout her pregnancy. On November 17, 1984, when Lia was two and a half, Pang Lee—a healthy, vigorous, completely normal baby girl—was born. After the birth, Foua breast-fed both Lia and Pang. She was exhausted and, according to a Child Welfare report, “overwhelmed.”

On April 30, 1985, four days after Lia’s eleventh hospitalization at MCMC, a visiting public health nurse found that the Lees were giving Lia a double dose of Tegretol pills, which they had stored in an old phenobarbital bottle. On May 1, the nurse noted that Lia’s father “now refuses to give any Tegretol whatsoever.” That same day, Neil noted that when Lia came to the pediatric clinic, “the family stated to me through the interpreter that they have stopped the Phenobarbital 5 days ago and the child apparently has received no Phenobarbital since hospital discharge. Mother stated that the combination of Tegretol and Phenobarbital was ‘too strong’ for the child and she decided to stop the medication.”

Neil sent a copy of this note to the Health Department and to Child Protective Services. In it, he also wrote that

The Superior Court of the State of California immediately acted on Neil’s request, declaring Lia Lee to be a Dependent Child of the Juvenile Court who was to be removed from the custody of her parents.

It was said in the refugee camps in Thailand that the Hmong in America could not find work, were forbidden to practice their religion, and were robbed and beaten by gangs. It was also said that Hmong women were forced into slavery, forced to have sex with American men, and forced to have sex with animals. Dinosaurs lived in America, as well as ghosts, ogres, and giants. With all this to worry about, why did the 15,000 Hmong who gathered on the Ban Vinai soccer field to voice their deepest fears about life in the United States choose to fixate on
doctors?

A year after I first read the account of that gathering, as I was attempting to deal out a teetering pile of notes, clippings, and photocopied pages from books and dissertations into several drawerfuls of file folders, I had a glimmering of insight. There were hundreds of pages whose proper home I was at a loss to determine. Should they go in the Medicine folder? The Mental Health folder? The Animism folder? The Shamanism folder? The Social Structure folder? The Body/Mind/Soul Continuum folder? I hovered uncertainly, pages in hand, and realized that I was suspended in a large bowl of Fish Soup. Medicine
was
religion. Religion was society. Society was medicine. Even economics were mixed up in there somewhere (you had to have or borrow enough money to buy a pig, or even a cow, in case someone got sick and a sacrifice was required), and so was music (if you didn’t have a
qeej
player at your funeral, your soul wouldn’t be guided on its posthumous travels, and it couldn’t be reborn, and it might make your relatives sick). In fact, the Hmong view of health care seemed to me to be precisely the opposite of the prevailing American one, in which the practice of medicine has fissioned into smaller and smaller sub-specialties, with less and less truck between bailiwicks. The Hmong carried holism to its ultima Thule. As my web of cross-references grew more and more thickly interlaced, I concluded that the Hmong preoccupation with medical issues was nothing less than a preoccupation with life. (And death. And life after death.)

Not realizing that when a man named Xiong or Lee or Moua walked into the Family Practice Center with a stomachache he was actually complaining that the entire universe was out of balance, the young doctors of Merced frequently failed to satisfy their Hmong patients. How could they succeed? They could hardly be expected, as Dwight Conquergood had done at Ban Vinai, to launch a parade of tigers and
dabs
through the corridors of MCMC. They could hardly be expected to “respect” their patients’ system of health beliefs (if indeed they ever had the time and the interpreters to find out what it was), since the medical schools they had attended had never informed them that diseases are caused by fugitive souls and cured by jugulated chickens. All of them had spent hundreds of hours dissecting cadavers, and could distinguish at a glance between the ligament of Hessel-bach and the ligament of Treitz, but none of them had had a single hour of instruction in cross-cultural medicine. To most of them, the Hmong taboos against blood tests, spinal taps, surgery, anesthesia, and autopsies—the basic tools of modern medicine—seemed like self-defeating ignorance. They had no way of knowing that a Hmong might regard these taboos as the sacred guardians of his identity, indeed, quite literally, of his very soul. What the doctors viewed as clinical efficiency the Hmong viewed as frosty arrogance. And no matter what the doctors did, even if it never trespassed on taboo territory, the Hmong, freighted as they were with negative expectations accumulated before they came to America, inevitably interpreted it in the worst possible light.

Whenever I talked to Hmong people in Merced, I asked them what they thought of the medical care they and their friends had received.

“The doctor at MCMC are young and new. They do what they want to do. Doctor want to look inside the woman body. The woman very pain, very hurt, but the doctor just want to practice on her.”

“One lady, she is cry, cry, cry. She do not want doctor to see her body. But this country there is the rule. If you want to stay here you must let doctor examine the body.”

“Most old people prefer not to go to doctor. They feel, maybe doctor just want to study me, not help my problems. They scary this. If they go one time, if they not follow appointment and do like doctor want, doctor get mad. Doctor is like earth and sky. He think, you are refugee, you know nothing.”

“It took us an hour to see the doctor. Other people who are rich, they treat them really well and they do not wait.”

“This lady she had some blisters inside the mouth and the doctor he say, you need surgical treatment. She say, no, I just need medication for pain only. And he say, I know more than you do. He completely ignore what she ask.”

“My half brother his body was swollen and itchy, and the doctors say, hey, you got a cancer and we need to operate. He agreed to sign the operation but then he didn’t want to do it. But he say to me, I already sign everything and the doctor going to send me to jail if I change my mind.”

“Hmong should never sign anything at MCMC. The student doctors just want to experiment on the poor people and they kill the poor people.”

“The doctor is very busy. He takes people that are sick, he produces people that are healthy. If he do not produce, his economic will be deficit. But the Hmong, he will want the doctor to calmly explain and comfort him. That does not happen. I do not blame the doctor. It is the system in America.”

All of the people quoted here speak English, and thus belong to the most educated and most Americanized segment of Hmong society in Merced—the segment most likely to understand and value Western medical care. Nonetheless, their version of reality fails to match that of their doctors pretty much across the board. From the doctors’ point of view, the facts are as follows: MCMC is indeed a teaching hospital, but this works to its patients’ advantage, since it has attracted skilled faculty members who must constantly update their knowledge and techniques. The young residents are all M.D.s, not students. The Hmong spend a long time in the waiting area, but so does everyone else. Patients who change their minds about surgery do not go to jail. The doctors do not experiment on their patients. Neither do they kill them, though their patients do sometimes die, and are more likely to do so if, like the Hmong, they view the hospital as a dreaded last resort to be hazarded only when all else fails.

Although the doctors at MCMC are not aware of most of the Hmong’s specific criticisms—they would be unlikely to ask, and the Hmong would be unlikely to answer—they certainly know the Hmong do not like them, and that rankles. The residents may be exhausted (since their shifts are up to twenty-four hours long, and until recent years were up to thirty-three hours long); they may be rushed (since many clinic appointments are only fifteen minutes long); but they are not—and they
know
they are not—greedy or spiteful. Most of them have chosen the field of family practice, which is the lowest-paying of all medical specialties, for altruistic reasons. “Of course, some of the subspecialists would say we went into family medicine because we weren’t smart enough to be urologists or ophthalmologists,” Bill Selvidge, MCMC’s former chief resident, told me. “If we
were
urologists, we’d be making a lot more money and we wouldn’t have to get up so often in the middle of the night.”

Bill is an old college friend of mine. It was he who first told me about the Hmong of Merced, whom he described as being such challenging patients that some of his fellow doctors suggested the preferred method of treatment for them was high-velocity transcortical lead therapy. (When I asked Bill what that meant, he explained, “The patient should be shot in the head.”) Bill himself did not seem to find the Hmong quite as exasperating as some of his colleagues did, perhaps because of the lessons in cultural relativism he had learned during the two years he had spent with the Peace Corps in Micronesia, and perhaps because, as he pointed out to me, the Hmong acted no stranger than his next-door neighbors in Merced, a family of white fundamentalist Christians who had smashed their television set and then danced a jig around it. (The neighbors’ children had then offered to smash Bill’s set as well. He had politely declined.) Bill was the sort of person I’d always wanted to have as a doctor myself, and before I came to Merced, I found it hard to believe that his Hmong patients weren’t prostrate with gratitude.

When refugees from Laos started settling in Merced County in the early 1980s, none of the doctors at MCMC had ever heard the word “Hmong,” and they had no idea what to make of their new patients. They wore strange clothes—often children’s clothes, which were approximately the right size—acquired at the local Goodwill. When they undressed for an examination, the women were sometimes wearing Jockey shorts and the men were sometimes wearing bikini underpants with little pink butterflies. They wore amulets around their necks and cotton strings around their wrists (the sicker the patient, the more numerous the strings). They smelled of camphor, mentholatum, Tiger Balm, and herbs. When they were admitted to the hospital, they brought their own food and medicines. The parents of one of Neil Ernst’s patients, a small boy with a gastrointestinal disorder, once emptied his intravenous bottle and replaced its contents with what Neil described as green slime, an herbal home brew whose ingredients the doctors never determined. Hmong patients made a lot of noise. Sometimes they wanted to slaughter live animals in the hospital. Tom Sult, a former MCMC resident, recalled, “They’d bang the crap out of some kind of musical instrument, and the American patients would complain. Finally we had to talk to them. No gongs. And no dead chickens.”

Neil Ernst and Peggy Philp were shocked to discover quarter-sized round lesions, some reddish and some hypopigmented, on the abdomens and arms of some of their pediatric patients. They looked like burns. Some of the lesions had healed and others were still crusty, suggesting that the skin had been traumatized on more than one occasion. Neil and Peggy immediately called the Child Protective Services office to report that they had identified several cases of child abuse. Before the cases were prosecuted, they learned from a San Francisco doctor that the lesions were the result of dermal treatments—rubbing the skin with coins or igniting alcohol-soaked cotton under a tiny cup to create a vacuum—that were common among several Asian ethnic groups, and that they were a “traditional healing art,” not a form of abuse. (I once attended a conference on Southeast Asian health care issues at which a prominent doctor showed some slides of coin-rubbing lesions and told the audience, “It doesn’t hurt.” The young Lao woman sitting next to me whispered, “Yes it does.”) Dan Murphy remembers that when he was a resident, he heard a story about a Hmong father in Fresno who was sent to jail after black marks were discovered on his child’s chest by an elementary school teacher. The father hanged himself in his cell. The story is probably apocryphal (though it is still in wide circulation), but Dan and the other doctors believed it, and they were shaken to realize how high the stakes could be if they made a tactical error in dealing with the Hmong.

And there were so many ways to err! When doctors conferred with a Hmong family, it was tempting to address the reassuringly Americanized teenaged girl who wore lipstick and spoke English rather than the old man who squatted silently in the corner. Yet failing to work within the traditional Hmong hierarchy, in which males ranked higher than females and old people higher than young ones, not only insulted the entire family but also yielded confused results, since the crucial questions had not been directed toward those who had the power to make the decisions. Doctors could also appear disrespectful if they tried to maintain friendly eye contact (which was considered invasive), touched the head of an adult without permission (grossly insulting), or beckoned with a crooked finger (appropriate only for animals). And doctors could lose the respect of their patients if they didn’t act like authority figures. The young residents at MCMC did not enhance their status by their propensities for introducing themselves by their first names, wearing blue jeans under their white coats, carrying their medical charts in little backpacks, and drinking their coffee from Tommee Tippee cups. Doctors could get into trouble if they failed to take the Hmong’s religious beliefs into account. For example, it was important never to compliment a baby’s beauty out loud, lest a
dab
overhear and be unable to resist snatching its soul. Similarly, when a seventeen-year-old Hmong patient once asked if her failure to get pregnant might be attributable to the
dab
who frequently visited her in her dreams, sometimes sitting on the edge of her bed and sometimes having sexual intercourse with her, it was fortunate that the resident on duty in OB-GYN Clinic listened with calm attention instead of diagnosing an acute psychosis and dispatching her to a locked ward. On the other hand, bending over backwards to be culturally sensitive did not always work. Bill Selvidge once examined a depressed middle-aged Hmong woman with severe headaches. Surmising that some of her problems stemmed from cultural dislocation and that her spirits might be buoyed by traditional treatment, he recommended that she see a
txiv neeb
. However, as he reported in his clinic note, “She is reluctant to go to a shaman, partly because she is now Catholic and partly because it takes too many chickens and/or pig that have to be killed in her home for her to satisfy shamans and traditional healers. She may have tried this in the past because she indicates a previous landlord told her to leave home after police were called when some members of her family were just about to sacrifice a pig.” Disappointed, Bill prescribed aspirin.

Compared to the other patients that frequented Merced Community Medical Center, the Hmong were not only trickier but sicker. They had a high incidence of high blood pressure, anemia, diabetes, hepatitis B, tuberculosis, intestinal parasites, respiratory infections, and tooth decay. Some of them had injuries or illnesses they had acquired during the war in Laos or its aftermath: gunshot wounds, chronic shoulder pain from carrying M-16 rifles, deafness from exploding artillery shells. “And how long have you had these headaches?” asked one bored doctor. His Hmong patient replied matter-of-factly, “Ever since I got shot in the head.” Another doctor, wondering if a Hmong patient’s unusual neuropathies might have been caused by nutritional deficiencies, learned that while fleeing to Thailand the man had spent several months living in the jungle, subsisting largely on insects.