Excerpt, Ch. 3 by Anne Fadiman
When Lisa was about three months old, her older sister Yer slammed the front door of the Lees’ apartment. A few moments later, Lia’s eyes rolled up, her arms jerked over her head, and she fainted. The Lees had little doubt what had happened. Despite the careful installation of Lia’s soul during the hu plig ceremony, the noise of the door had been so profoundly frightening that her soul had fled her body and become lost. They recognized the resulting symptoms as qaug dab peg, which means “the spirit catches you and you fall down.” The spirit referred to in this phrase is a soul-stealing dab; peg means to catch or hit; and qaug means to fell over with one’s roots still in the ground, as grain might be beaten down by wind or rain.
In Hmong-English dictionaries, qaug dab peg is generally translated as epilepsy. It is an illness well known to the Hmong, who regard it with ambivalence. On the one hand, it is acknowledged to be a serious and potentially dangerous condition. Tony Coelho, who was Merced’s congressman from 1979 to 1989, is an epileptic. Coelho is a popular figure among the Hmong, and a few years ago, some local Hmong men were sufficiently concerned when they learned he suffered from qaug dab peg that they volunteered the services of a shaman, a txiv neeb, to perform a ceremony that would retrieve Coelho’s errant soul. The Hmong leader to whom they made this proposition politely discouraged them, suspecting that Coelho, who is a Catholic of Portuguese descent, might not appreciate having chickens, and maybe a pig as well, sacrificed on his behalf.
On the other hand, the Hmong consider qaug dab peg to be an illness of some distinction. This fact might have surprised Tony Coelho no less than the dead chickens would have. Before he entered politics, Coelho planned to become a Jesuit priest, but was barred by a canon forbidding the ordination of epileptics. What was considered a disqualifying impairment by Coelho’s church might have been seen by the Hmong as a sign that he was particularly fit for divine office. Hmong epileptics often become shamans. Their seizures are thought to be evidence that they have the power to perceive things other people cannot see, as well as facilitating their entry into trances, a prerequisite for their journeys into the realm of the unseen. The fact that they have been ill themselves gives them an intuitive sympathy for the suffering of others and lends them emotional credibility as healers. Becoming a txiv neeb is not a choice; it is a vocation. The calling is revealed when a person falls sick, either with qaug dab peg or with some other illness whose symptoms similarly include shivering and pain. An established txiv neeb, summoned to diagnose the problem, may conclude from these symptoms that the person (who is usually hut not always male) has been chosen to be the host of a healing spirit, a neeb. (Txiv neeb means “person with a healing spirit.”) It is an offer that the sick person cannot refuse, since if he rejects his vocation, he will die. In any case, few Hmong would choose to decline. Although shamanism is an arduous calling that requires years of training with a master in order to learn the ritual techniques and chants, it confers an enormous amount of social status in the community and publicly marks the txiv neeb as a person of high moral character, since a healing spirit would never choose a no-account host. Even if an epileptic turns out not to be elected to host a neeb, his illness, with its thrilling aura of the supramundane, singles him out as a person of consequence.
In their attitude toward Lia’s seizures, the Lees reflected this mixture of concern and pride. The Hmong are known for the gentleness with which they treat their children. Hugo Adolf Bernatzik, a German ethnographer who lived with the Hmong of Thailand for several years during the 1930s, wrote that the Hmong he had studied regarded a child as “the most treasured possession a person can have.” In Laos, a baby was never apart from its mother, sleeping in her arms all night and riding on her back all day. Small children were rarely abused; it was believed that a dab who witnessed mistreatment might take the child, assuming it was not wanted. The Hmong who live in the United States have continued to be unusually attentive parents. A study conducted at the University of Minnesota found Hmong infants in the first month of life to be less irritable and more securely attached to their mothers than Caucasian infants, a difference the researcher attributed to the fact that the Hmong mothers were, without exception, more sensitive, more accepting, and more responsive, as well as “exquisitely attuned” to their children’s signals. Another study, conducted in Portland, Oregon, found that Hmong mothers held and touched their babies far more frequently than Caucasian mothers. In a third study, conducted at the Hennepin County Medical Center in Minnesota, a group of Hmong mothers of toddlers surpassed a group of Caucasian mothers of similar socioeconomic status in every one of fourteen categories selected from the Egeland Mother-Child Rating Scale, ranging from “Speed of Responsiveness to Fussing and Crying” to “Delight.”
Foua and Nao Kao had nurtured Lia in typical Hmong fashion (on the Egeland Scale, they would have scored especially high in Delight), and they were naturally distressed to think that anything might compromise her health and happiness. They therefore hoped, at least most of the time, that the qaug dab peg could be healed. Yet they also considered the illness an honor. Jeanine Hilt, a social worker who knew the Lees well, told me, “They felt Lia was kind of an anointed one, like a member of royalty. She was a very special person in their culture because she had these spirits in her and she might grow up to be a shaman, and so sometimes their thinking was that this was not so much a medical problem as it was a blessing.” (Of the forty or so American doctors, nurses, and Merced County agency employees I spoke with who had dealt with Lia and her family, several had a vague idea that “spirits” were somehow involved, but Jeanine Hilt was the only one who had actually asked the Lees what they thought was the cause of their daughter’s illness.)
Within the Lee family, in one of those unconscious processes of selection that are as mysterious as any other form of falling in love, it was obvious that Lia was her parents’ favorite, the child they considered the most beautiful, the one who was most extravagantly hugged and kissed, the one who was dressed in the most exquisite garments (embroidered by Foua, wearing dime-store glasses to work her almost microscopic stitches). Whether Lia occupied this position from the moment of her birth, whether it was a result of her spiritually distinguished illness, or whether it came from the special tenderness any parent feels for a sick child, is not a matter Foua and Nao Kao wish, or are able, to analyze. One thing that is clear is that for many years the cost of that extra love was partially borne by her sister Yer. “They blamed Yer for slamming the door,” said Jeanine Hilt. “I tried many times to explain that the door had nothing to do with it, but they didn’t believe me. Lia’s illness made them so sad that I think for a long time they treated Yer differently from their other children.”
During the next few months of her life, Lia had at least twenty more seizures. On two occasions, Foua and Nao Kao were worried enough to carry her in their arms to the emergency room at Merced Community Medical Center, which was three blocks from their apartment. Like most Hmong refugees, they had their doubts about the efficacy of Western medical techniques. However, when they were living in the Mae Jarim refugee camp in Thailand, their only surviving son, Cheng, and three of their six surviving daughters, Ge, May, and True, had been seriously ill. Ge died. They took Cheng, May, and True to the camp hospital; Cheng and May recovered rapidly, and True was sent to another, larger hospital, where she eventually recovered as well. (The Lees also concurrently addressed the possible spiritual origins of their children’s illnesses by moving to a new hut. A dead person had been buried beneath their old one, and his soul might have wished to harm the new residents.) This experience did nothing to shake their faith in traditional Hmong beliefs about the causes and cures of illness, but it did convince them that on some occasions Western doctors could be of additional help, and that it would do no harm to hedge their bets.
County hospitals have a reputation for being crowded, dilapidated, and dingy. Merced’s county hospital, with which the Lees would become all too familiar over the next few years, is none of these. The MCMC complex includes a modern, 42,000-square-foot wing—it looks sort of like an art moderne ocean liner—that houses coronary care, intensive care, and transitional care units; 15% medical and surgical beds; medical and radiology laboratories outfitted with state-of-the-art diagnostic equipment; and a blood bank. The waiting rooms in the hospital and its attached clinic have unshredded magazines, un-smelly bathrooms, and floors that have been scrubbed to an aseptic gloss. MCMC is a teaching hospital, staffed in part by the faculty and residents of the Family Practice Residency, which is affiliated with the University of California at Davis. The residency program is nationally known, and receives at least 150 applications annually, for its six first-year positions.
Like many other rural county hospitals, which were likely to feel the health care crunch before it reached urban hospitals, MCMC has been plagued with financial problems throughout the last twenty years. It accepts all patients, whether or not they can pay; only twenty percent are privately insured, with most of the rest receiving aid from California’s Medi-Cal, Medicare, or Medically Indigent Adult programs, and a small (but to the hospital, costly) percentage neither insured nor covered by any federal or state program. The hospital receives reimbursements from the public programs, but many of those reimbursements have been lowered or restricted in recent years. Although the private patients are far more profitable, MCMC’s efforts to attract what its administrator has called “an improved payer mix” .have not been very successful. (Merced’s wealthier residents often choose either a private Catholic hospital three miles north of MCMC or a larger hospital in a nearby city such as Fresno.) MCMC went through a particularly rough period during the late eighties, hitting bottom in 1988, when it had a $3.1 million deficit.
During this same period, MCMC also experienced an expensive change in its patient population. Starting in the late seventies, Southeast Asian refugees began to move to Merced in large numbers. The city of Merced, which has a population of about 61,000, now has just over 12,000 Hmong. That is to say, one in five residents of Merced is Hmong. Because many Hmong fear and shun the hospital, MCMC’s patient rolls reflect a somewhat lower ratio, but on any given day there are still Hmong patients in almost every unit. Not only do the Hmong fail resoundingly to improve the payer mix—more than eighty percent are on Medi-Cal—but they have proved even more costly than other indigent patients, because they generally require more time and attention, and because there are so many of them that MCMC has had to hire bilingual staff members to mediate between patients and providers.
There are no funds in the hospital budget specifically earmarked for interpreters, so the administration has detoured around that technicality by hiring Hmong lab assistants, nurse’s aides, and transporters, who are called upon to translate in the scarce interstices between analyzing blood, emptying bedpans, and rolling- postoperative patients around on gurneys. In 1991, a short-term federal grant enabled MCMC to put skilled interpreters on call around the clock, but the program expired the following year. Except during that brief hiatus, there have often been no Hmong-speaking employees of any kind present in the hospital at night. Obstetricians have had to obtain consent for cesarean sections or episiotomies using embarrassed teenaged sons, who have learned English in school, as translators. Ten-year-old girls have had to translate discussions of whether or not a dying family member should be resuscitated. Sometimes not even a child is available. Doctors on the late shift in the emergency room have often had no way of taking a patient’s medical history, or of asking such questions as Where do you hurt? How long have you been hurting? What does it feel like? Have you had an accident? Have you vomited? Have you had a fever? Have you lost consciousness? Are you pregnant? Have you taken any medications? Are you allergic to any medications? Have you recently eaten? (The last question is of great importance if emergency surgery is being contemplated, since anesthetized patients with full stomachs can aspirate the partially digested food into their lungs, and may die if they choke or if their bronchial linings are badly burned by stomach acid.) I asked one doctor what he did in such cases. He said, “Practice veterinary medicine.”
On October 24, 1982, the first time that Foua and Nao Kao carried Lia to the emergency room, MCMC had not yet hired any interpreters, de jure or de facto, for any shift. At that time, the only hospital employee who sometimes translated for Hmong patients was a janitor, a Laotian immigrant fluent in his own language, Lao, which few Hmong understand; halting in Hmong; and even more halting in English, On that day either the janitor was unavailable or the emergency room staff didn’t think of calling him. The resident on duty practiced veterinary medicine. Foua and Nao Kao had no way of explaining what had happened, since Lia’s seizures had stopped by the time they reached the hospital. Her only obvious symptoms were a cough and a congested chest. The resident ordered an X ray, which led the radiologist to conclude that Lia had “early bronchopneumonia or tracheobronchitis.” As he had no way of knowing that the bronchial congestion was probably caused by aspiration of saliva or vomit during her seizure (a common problem for epileptics), she was routinely dismissed with a prescription for ampicillin, an antibiotic, Her emergency room Registration Record lists her father’s last name as Yang, her mother’s maiden name as Foua, and her “primary spoken language” as “Mong.” When Lia was discharged, Nao Kao (who knows the alphabet but does not speak or read English) signed a piece of paper that said, “I hereby acknowledge receipt of the instructions indicated above,” to wit: “Take ampicillin as directed. Vaporizer at cribside. Clinic reached as needed 383-7007 ten days.” The “ten days” meant that Nao Kao was supposed to call the Family Practice Center in ten days for a follow-up appointment. Not surprisingly, since he had no idea what he had agreed to, he didn’t. But when Lia had another bad seizure on November 11, he and Foua carried her to the emergency room again, where the same scene was repeated, and the same misdiagnosis made.
On March 3, 1983, Foua and Nao Kao carried Lia to the emergency room a third time. On this occasion, three circumstances were different: Lia was still seizing when they arrived, they were accompanied by a cousin who spoke some English, and one of the doctors on duty was a family practice resident named Dan Murphy. Of all the doctors who have worked at MCMC, Dan Murphy is generally acknowledged to be the one most interested in and knowledgeable about the Hmong. At that time, he had been living in Merced for only seven months, so his interest still exceeded his knowledge. When he and his wife, Cindy, moved to Merced, they had never heard the word “Hmong.” Several years later, Cindy was teaching English to Hmong adults and Dan was inviting Hmong leaders to the hospital-to tell the residents about their experiences as refugees. Most important, the Murphys counted a Hmong family, the Xiongs, among their closest friends. When one of the Xiong daughters wanted to spend the summer working in Yosemite National Park, Chaly Xiong, her father, initially refused because he was afraid she might get eaten by a lion. Dan personally escorted Chaly to Yosemite to verify the absence of lions; and persuaded him the job would do his daughter good. Four months later, Chaly was killed in an automobile accident. Cindy Murphy arranged the funeral, calling around until she found a funeral parlor that was willing to accommodate three days of incense burning, drum beating, and qeej playing. She also bought several live chickens, which were sacrificed in the parking lot of the funeral parlor, as well as a calf and a pig, which were sacrificed elsewhere. When Dan first saw the Lees, he instantly registered that they were Hmong, and he thought to himself “This won’t be boring.”
Many years later, Dan, who is a short, genial man with an Amish-style beard and an incandescent smile, recalled the encounter. “I have this memory of Lia’s parents standing just inside the door to the ER, holding a chubby little round-faced baby. She was having a generalized seizure. Her eyes were rolled back, she was unconscious, her arms and legs were kind of jerking back and forth, and she didn’t breathe much– every once in a while, there would be no movement of the chest wall and you couldn’t hear any breath sounds. That was definitely anxiety-producing. She was the youngest patient I had ever dealt with who was seizing. The parents seemed frightened, not terribly frightened though, not as frightened as I would have been if it was my kid. I thought it might be meningitis, so Lia had to have a spinal tap and the parents were real resistant to that. I don’t remember how I convinced them. I remember feeling very anxious because they had a real sick kid and I felt a big need to explain to these people, through their relative who was a not-very-good translator, what was going on, but I felt like I had no time, because we had to put an IV in her scalp with Valium to stop the seizures, but then Lia started seizing again and the IV went into the skin instead of the vein, and I had a hard time getting another one started. Later on, when I figured out what had happened, or not happened, on the earlier visits to the ER, I felt good. It’s kind of a thrill to find something someone else has missed, especially when you’re a resident and you are looking for excuses to make yourself feel smarter than the other physicians.”
Among Dan’s notes in Lia’s History and Physical Examination record were:
HISTORY OF PRESENT ILLNESS: The patient; is an 8 month, Hmong female, whose family brought her to the emergency room after they had noticed her shaking and not breathing very well for a 20~minute period of time. According to the family; the patient has had multiple like episodes in the past, but have never been able to communicate this to emergency room doctors on previous visits secondary to a language barrier. An english speaking relative available tonight, stated that the patient had had intermittent fever and cough for 2-3 days prior to being admitted.
FAMILY & SOCIAL HISTORY: Unobtainable secondary to language difficulties.
NEUROLOGICAL: The child was unresponsive to pain or sound. The head was held to the left with intermittent tonic-clonic [first rigid, then jerking] movements of the upper extremities. Respirations were suppressed during these periods of clonic movement. Grunting respirations persisted until the patient was given 3 mg. of Valium I.V.
Dan had no way of knowing that Foua and Nao Kao had already diagnosed their daughter’s problem as the illness where the spirit catches you and you fall down. Foua and Nao Kao had no way of knowing that Dan had diagnosed it as epilepsy, the most common of all neurological disorders. Each had accurately noted the same symptoms, but Dan would have been surprised to hear that they were caused by soul loss, and Lia’s parents would have been surprised to hear that they were caused by an electrochemical storm inside their daughter’s head that had been stirred up by the misfiring of aberrant brain cells.
Dan had learned in medical school that epilepsy is a sporadic malfunction of the brain, sometimes mild and sometimes severe, sometimes progressive and sometimes self-limiting, which can be traced to oxygen deprivation during gestation, labor, or birth; a head injury; a tumor; an infection; a high fever; a stroke; a metabolic disturbance; a drug allergy; a toxic reaction to a poison. Sometimes the source is obvious –the patient had a brain tumor or swallowed strychnine or crashed through a windshield—but in about seven out of ten cases, the cause is never determined. During an epileptic episode, instead of following their usual orderly protocol, the damaged cells in the cerebral cortex transmit neural impulses simultaneously and chaotically, When only a small area of the brain is involved-—in a “focal” seizure—an epileptic may hallucinate or twitch or tingle but retain conciousness. When the electrical disturbance extends to a wide area in a “generalized” seizure—consciousness is lost, either for the ^episodes called petit mal or “absence” seizures, or for the full blown attacks known as grand mal. Except through surgery, whose risks consign it to the category of last resort, epilepsy cannot be cured, but it can be completely or partially controlled in most cases by anti-convulsant drugs.
The Hmong are not the only people who might have good reason to ambivalent about suppressing the symptoms. The Greeks called epilepsy “the sacred disease.” Dan Murphy’s diagnosis added Lia Lee to a distinguished line of epileptics that has included Soren Kierkegaard, Vincent van Gogh, Gustave Flaubert, Lewis Carroll, and Fyodor Dostoyevsky, all of whom, like many Hmong shamans, experienced powerful senses of grandeur and spiritual passion during their seizures, and powerful creative urges in their wake. As Dostoyevsky’s Prince Myshkin asked, “What if it is a disease? What does it matter that it is an abnormal tension, if the result, if the moment of sensation, remembered and analysed in a state of health, turns out to be harmony and beauty brought to their highest point of perfection, and gives a feeling, undivined and undreamt of till then, of completeness, proportion, reconciliation, and an ecstatic and prayerful fusion in the highest synthesis of life?”
Although the inklings Dan had gathered of the transcendental Hmong worldview seemed to him to possess both power and beauty, his own view of medicine in general, and of epilepsy in particular, was like that of his colleagues at MCMC, essentially rationalist. Hippocrates’ skeptical commentary on the nature of epilepsy, made around 400 B.C. pretty much sums up Dan’s own frame of reference: “It seems to me that the disease is no more divine than any other. It has a natural cause just as other diseases have. Men think it is divine merely because they don’t understand it. But if they called everything divine which they do not understand, why, there would be no end of divine things.”*
Lia’s seizure was a grand mal episode, and Dari had no desire to do anything but stop it. He admitted her to MCMC as an inpatient. Among the tests she had during the three days she spent there were a spinal tap, a CT scan, an EEG, a chest X ray, and extensive blood work. Foua and Nao Kao signed “Authorization for and Consent to Surgery or Special Diagnostic or Therapeutic Procedures” forms, each several hundred words long, for the first two of these. It is not known whether anyone attempted to translate them, or, if so, how “Your physician, has requested a brain scan utilizing computerized tomography” was rendered in Hmong. None of the tests revealed any apparent cause for the seizures. The doctors classified Lia’s epilepsy as “idiopathic”: cause unknown. Lia was found to have consolidation in her right lung, which this time was correctly diagnosed as aspiration pneumonia resulting from the seizure. Foua and Nao Kao alternated nights at the hospital, sleeping in a cot next to Lia’s bed. Among the Nurse’s Notes for Lia’s last night at the hospital were: “0001. Skin cool and dry to touch, color good & pink. Mom is with babe at this time & is breastfeeding. Mom informed to keep babe covered with a blanket for the babe is a little cool.” “0400. Babe resting quietly with no acute distress noted. Mom breast feeds off & on.” “0600 Sleeping.” “0730. Awake, color good. Mother fed.” “1200. Held by mother.”
Lia was discharged on March 11, 1983. Her parents were instructed, via an English-speaking relative, to give her 250 milligrams of ampicillin twice a day, to clear up her aspiration pneumonia and twenty milligrams of Dilantin elixir, an anticonvulsant, twice a day, to suppress any farther grand mal seizures.
*Despite this early attempt by Hippocrates (or perhaps by one of the anonymous physicians who’s writings are attributed to Hippocrates) to remove the “divine” label, epilepsy continued, more than any other disease, to be ascribed to supernatural causes. The medical historian Owsei Temkin has noted that epilepsy has held a key position historically in “the struggle between magic and the scientific conception.” Many treatments for epilepsy have occult associations. Greek magicians forbade epileptics to eat mint, garlic, and onion, as well as the flesh of goats, pigs, deer, dogs, cocks, turtledoves, bustards, mullets, and eels; to wear black garments and goatskins; and to cross their hands and feet; taboos that were all connected in various ways with chthonic deities. Roman epileptics were advised to swallow morsels cut from the livers of stabbed gladiators. During the Middle Ages, when epilepsy was attributed to demonic possession, treatments included prayer, fasting, wearing amulets, lighting candles, visiting the graves of saints, and writing the names of the Three Wise Men with blood taken from the patient’s little finger. These spiritual remedies were far safer than the “medical” therapies of the time — still practices as late as the seventeenth century — which included cauterizing the head with a hot iron and boring a hole in the skull to release peccant vapors.