The Spirit Catches You and You Fall Down: Chapter 17 Summary & Analysis

Fadiman discloses that Lia neither died nor recovered. As her siblings aged and assimilated into American culture, Lia remained nonresponsive, growing only several inches. Meanwhile, Nao Kao gained weight and suffered from high blood pressure, while Foua felt constantly fatigued. At Jeanine Hilt’s suggestion, they re-enrolled Lia in the Schelby Center for Special Education, where Dee Korda (whose foster child was cognitively challenged) often saw her and was filled with sadness. Jeanine Hilt died in 1993 after having an acute asthma attack that sent her into hypoxic ischemic encephalopathy, depriving her of oxygen and causing her to lose brain function in the same manner Lia had. When Foua heard the news, she was distraught, explaining to Fadiman, “I cried because Jenny had told me […] 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 and Peggy Philp continued to practice, winning awards and gaining promotions. When their son was diagnosed with Leukemia, Foua—who had heard the news—expressed great concern, asking Peggy how he was doing. In a letter to Fadiman about this encounter, Neil wrote: “At the end of the visit Mrs. Lee was hugging Peggy and they were both shedding a few tears. Sorrows of motherhood cut through all cultural barriers.” When their son entered permanent remission, Foua continued to ask after him. In a later letter, Neil wrote: “Our contacts with [Foua] are very infrequent because her family provides excellent care for Lia, but they are special nonetheless.”

In an effort to gain some clarity about the anticonvulsant medications prescribed to Lia, Fadiman visited Dr. Hutchinson at Valley Children’s Hospital. He explained that Lia’s final seizure was the result of the septic shock her brain suffered. When Fadiman asked if the Lees’ earlier noncompliance had affected this outcome, he assured her that the two matters were unrelated. “The only influence that medications could have had,” he told her, “is that the Depakene we prescribed might have compromised her immune system and made her more susceptible to the Pseudomonas [the bacterial infection that led to toxic shock].” Fadiman told Hutchinson that Foua and Nao Kao believed the problem was caused by too much medicine, to which he replied, “That may not be too far from the truth.” Fadiman stared at him, shocked. “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.”

Fadiman repeated Hutchinson’s theory to Neil and Peggy, who pored through their notes before determining that it was indeed a possibility that the Depakene had made Lia especially vulnerable to infection. When Fadiman told Dan Murphy the same thing, he pointed out that Neil probably would have caught the infection if it hadn’t been for Lia’s history of seizures; “No one at MCMC would have noticed anything but her seizures. Lia was her seizures,” he told her. Taking a cue from this sentiment, Fadiman notes the way doctors talked about Lia after her neurological crisis. Hutchinson, Neil, and Peggy all continued to refer to her as dead, even after Fadiman would remind them that she was alive. She remarks that this isn’t an oversight so much as an “admission of defeat”; their care and medical treatments had failed, so Lia was dead to them.

In an attempt to postulate what could have happened differently in Lia’s medical history, Fadiman spoke to Dan Murphy, who expressed that he believed there was a “gulf” between the Lees and the doctors that was “unbridgeable.” Fadiman obsessed over the notion, wondering if it was truly the case that these two cultures were irreconcilable in this situation. She evokes an idea Blia Yao Moua presented to her that Hmong culture is not Cartesian, which is to say that it is nonlinear. Western medicine, on the other hand, is incredibly Cartesian, devoted as it is to logic and empirical data.

Fadiman brings up a program of eight questions designed by Arthur Kleinman, a psychiatrist and medical anthropologist interested in cross-cultural medicine. The questions include: (1) What do you call the problem? (2) What do you think has caused the problem? (3) Why do you think it started when it did? (4) What do you think the sickness does? How does it work? (5) How severe is the sickness? Will it have a short or long course? (6) What kind of treatment do you think the patient should receive? What are the most important results you hope she receives from this treatment? (7) What are the chief problems the sickness has caused? (8) What do you fear most about the sickness?

Fadiman answered these questions in the way she thought the Lees would respond and brought the results to Kleinman. In contrast to Neil and Peggy, who were baffled to learn what the Lees actually believed, Kleinman was excited and unsurprised by the answers. Fadiman then explained to him what happened to Lia and asked what he would have suggested. First of all, he told her that the term “compliance” (in the context of following medical regimen) should not be used because it “implies moral hegemony”; second of all, he suggested that somebody should have brought in a member of the Hmong community or a medical anthropologist who could help negotiate between the family and the doctors (this would have required deciding upon certain limits, sticking to those, and accepting compromise on everything else); and third of all, he said that the doctors needed to remember that even their own culture has its own “set of interests, emotions, and biases.”