Spirit Catches You and You

¶ … Spirit Catches You and You Fall Down, teach us about how to face a complicated, troubling, and heart-rending set of circumstances and yet resist rushing to judgment, determining causes, finding fault, and solving problems before fully understanding how the primary participants see what is happening?

One of the most important things that the course readings teach is about forming judgment. Unless one is an officer of the law, one's judgment is really an opinion -- and, as such, is vulnerable to influence from one's own circumstances. Social anthropology acknowledges this effect on the conclusions drawn from situations.

Some of the circumstances that affect one's perception of the situation include one's own socioeconomic status. White American males are arguably some of the most powerful people in the world, and as such, are not accustomed to questioning their own perceptions of the situation. Why would they have to, when everything else bends to them? Until very recently they were the sole occupiers of the highest-ranked job in a country that places a higher value on employment than nearly anywhere else. They still hold most of the powerful seats of government. Until fairly recently, they were the largest group of college graduates, and still earn more than everyone else. They make the rules, and enforce them -- most police officers are white. Therefore, given the dominant worldview in our culture, it is easy to pass judgment from that perspective.

This is precisely what happened when Neil and Peggy, a husband and wife team who headed the pediatric residency program at Merced Community Medical Center, interacted with Lia and her family. As powerful people in the United States, they had done well within their native culture and power system. Given their power, they expected to dictate orders and have them followed by staff, patients, and caregivers. Their cultural expectations led to their decreeing a complicated treatment regimen and assuming it would be carried out without question or hesitation. This assumption was a problem.

The medication routine was viewed at best hesitantly by Nao Kao and Foua, and at worst as damaging to their daughter. Nao Kao and Foua believed that illnesses arose from the spiritual realm, instead of the physical. Specifically, they believed that souls lost to a dab, or evil spirit, were the underlying reason for illness. Furthermore, the rare symptoms of epilepsy revealed that their daughter's soul was special, a source of pride to them. In fact, her illness was so rare that she could be a txiv neebs, or shaman. Instead of dire worry and shame, they felt honored and proud that their daughter was so extraordinary, though slightly worried that her illness pained her.

As parents, this is not necessarily a bad belief to have when faced with a child afflicted with rare, incurable illness. Had Neil and Peggy asked Nao Kao and Foua what they thought about their daughter's epilepsy, much confusion might have been avoided. In fact, doctors are now routinely given a synopsis of Lia's case as part of their training in order to teach them about working with patients, instead of dictating orders to them (Management Sciences for Health, 2005). Doctors are now taught to look at medicine (Yurkiewicz, 2011) from Arthur Kleinman's explanatory model, mentioned in Chapter 8 of The Spirit Catches You and You Fall Down:

What do you call the problem?

What do you think the illness does?

What do you think the natural course of the illness is

What do you fear?

Why do you think this illness or problem has occurred?

How do you think the sickness should be treated?

How do want us to help you?

Who do you turn to for help?

Who should be involved in decision making? (Management Sciences for Health, 2005)

One should note that Nao Kao and Foua's beliefs are not that different from those held by members of The First Church of Christ, Scientist, who believe that humans are spiritual rather than material in nature. Since humans are spiritual, illness is an affliction of the spirit, as traditional Hmong believe. However, rather than a spirit stolen by a dab, Christian Scientists see sickness as a sign of weakness, sin, or disobedience. Both the Christian Scientists and the Hmong view sickness in infants as originating from spiritual issues in the parents. In Christian Science, healing, like in traditional Hmong belief, is accomplished through prayer.

The difference is that unlike Nao Kao and Foua's pride in their daughter's affliction, Christian Scientist parents would demand that the Lia heal herself by having faith that the illness and pain was not real, believing that her epilepsy simply didn't exist. Because Christian Scientists are native to America, they understand the gap between conventional Western medicine and their beliefs. Consequently, the Christian Scientists know how to work around the system that demands access to and conventional Western medical treatment of one's children. Because the United States Constitution guarantees a separation between church and state, and because children have historically been viewed as property in the United States, Christian Scientists and other groups have successfully sought and received the right at the state level to heal their children through prayer instead of and conventional Western medical treatment. If Nao Kao and Foua had found a lawyer willing to take their case to the American courts, they may have effectively avoided conventional Western medical treatment.

Instead, because Nao Kao and Foua were concerned parents who were attempting to ensure that their daughter would be a citizen of the United States, they made the conscious decision to have Lia in a hospital, rather than at home, as would have been traditional, because they wanted her to be an American citizen. Later, because they wanted Lia to be healthy, they did take her to the hospital for some prescription treatment of her seizures. However, cultural and language barriers meant that Nao Kao and Foua tried three times before doctors realized that her parents had taken Lia was to MCMC for treatment of her epilepsy. Having a translator readily available would have been helpful for all parties.

Not surprisingly, the Hmong still distrusted Western medicine. One reason that the Hmong distrusted Western medicine was because it was irrational to them. Why would you cut into someone, take his or her blood, or perform surgery, when the illness was of a spiritual nature? The Hmong believe that cutting into the body risks the soul flying out. In fact, the whole idea of internal surgery was so bizarre that they wondered if their doctors were a type of shaman that ate the body parts they cut out. Explaining to Nao Kao and Foua the rationale underlying the procedures would have benefited everyone, even if Nao Kao and Foua disagreed with the logic.

Another reason that Hmong distrusted Western medicine was that they are very respectful of one another's privacy, including the privacy of their body. Western doctors' requirement that patients expose themselves to the doctors, and let the doctor touch their most intimate places felt shameful and peculiar to them. This is common in cultures that value modesty and privacy, like Native Americans, Muslims, and Indians (Rabin, 2010). Having a shaman available to work with the doctor would probably have been immensely useful and reassuring. It was not unusual for a Hmong refuse to submit to the doctor's orders.

For example, the doctors had a difficult time finding Lia's veins because she was plump, which the Hmong viewed as healthy. When they finally found a vein, they needed Lia to lie still, so that the IV wouldn't come out, and the painful process wouldn't begin all over again -- so they restrained her. However, Nao Kao and Foua thought the nurses were simply sadistic, and untied Lia at every opportunity. Eventually, the nurses caged Lia away from Nao Kao and Foua. In Hmong culture, children are treasured and revered, and when the nurses restrained Lia to force-feed her medicine, Nao Kao and Foua were horrified. They would never be so brutal with their daughter. Again, communication would have helped. If Nao Kao understood that they were trying to prevent more pain for Lia, he might have been cooperative.

The medical staff at MCMC naturally attempted to treat the ongoing seizures by inserting an IV in Lia's veins for medicine, something that her parents found agonizing, because every needle risked their losing their daughter's soul. Because the Western staff considered time to be critical for a seizing child who was anoxic, cutting off her air supply and killing brain cells, they didn't have the time or the inclination to discuss the need for the procedure with Nao Kao and Foua -- not that an interpreter was usually available. Naturally, to have their beloved, extraordinary child taken away into the bowels of the hospital for procedures that endangered her soul, without even so much as an explanation was both terrifying and angering for Nao Kao and Foua.

Then, when Nao Kao and Foua took Lia home, Neil and Peggy prescribed a complicated multi-drug regimen that required precise timing. To a culture that didn't use calendars, giving a certain medicine at a certain hour of the day was incomprehensible. Neil and Peggy didn't consider that a somewhat less effective, but easier-to-follow drug regimen may have been better given the state of affairs. Instead, the Western idea of doing as much as medically possible for as long as medically possible prevailed. When Nao Kao and Foua failed to comply, Neil and Peggy viewed them as unable or unwilling to follow what was to them, directions that could save Lia's life. If Neil and Peggy had asked Nao Kao and Foua why they didn't comply, perhaps a productive dialog could have been created. When the author asked Peggy and Neil about it, they said that they had had no idea that Nao Kao and Foua would even consider traditional medicine, because they looked so Americanized.

Despite Neil and Peggy's perceptions, Nao Kao and Foua were very responsive to Lia's epilepsy, reassuring her before a seizure, and placing her in a soft place while she seized, as well as hiring traditional Hmong healers for her to perform ritual animal sacrifices to recall her soul from the dab. In another example, Nao Kao and Foua declined to give Lia the prescribed Tegretol because it made her hyperactive, or "wild." The Hmong practiced their own herbal medicine, and Nao Kao and Foua used their traditional Hmong herbal medicine for Lia, in combination with regular visits to MCMC. Nao Kao and Foua even tried to change her name to fool the dab, though when Neil and Peggy didn't comply, Nao Kao and Foua blamed them for the ineffectiveness of the treatment. As Lia got older, her seizures got worse, which was frightening for all involved. Nao Kao and Foua blamed the Western doctors' treatment, and Peggy and Neil blamed Nao Kao and Foua's inability to stick to the medication regimen.

Nao Kao and Foua, in contrast, were frustrated by the side effects of the medicine on their daughter. While Western doctors see hyperactivity or low energy as normal side effects of medicine that are tolerated for long-term benefit, Nao Kao and Foua saw the doctors as actually making Lia worse. In fact, they viewed Western medicine as interfering with their native traditions' healing power, or neeb. In addition, something that Neil and Peggy probably could not have comprehended was that Nao Kao and Foua didn't necessarily want Lia to be cured -- her affliction was a badge of honor -- they simply wanted her to be healthy. As a young toddler, she was generally healthy and energetic, which made the urgency of Neil and Peggy's commands unfathomable to Nao Kao and Foua. Nao Kao and Foua found it appropriate to give Lia a little medicine, just enough to make her healthy, but not enough to cure her. Neither could communicate the rightness of their actions to each other. That lack of communication made the situation damaging.

The status of communication about Lia's medical care deteriorated to the point that Neil and Peggy felt legally required to contact Child Protective Services because Nao Kao and Foua were in noncompliance with Neil and Peggy's orders about medication -- medical neglect. In a way, the medical system had eaten 3-year-Lia, which was what Nao Kao, Foua, and the other Hmong had feared when they first learned about this weird system. Intercultural understanding and contact could have helped, but Neil and Peggy were as much trapped by their enculturation as Nao Kao and Foua were by theirs.