When Epilepsy Goes By Another Name
In her book, The Spirit Catches You and You Fall Down, Anne Fadiman tells the story of Lia Lee, a young Hmong girl whose epilepsy was diagnosed in Merced, California. The title of Ms. Fadiman's book describes the Hmong translation of the word "epilepsy." Ms. Fadiman writes about the treatments recommended for Lia by her doctors in California and the conflicts that arose between this Western medical approach and the traditional Hmong cultural beliefs about epilepsy adhered to by Lia's parents.
Q: How did you become aware of Lia Lee and her experience and what led you to write this story?
Like most of the important things in life, it was pure accident. An old college friend, Bill Selvidge, was the chief resident in family practice at the county hospital in Merced, California. We were talking on the phone one day, and Bill told me about how fascinating (and difficult) it was to care for his Hmong patients. I happened to be writing up a series of article proposals for The New Yorker (at the time, I was a staff writer at Life), and at the last minute I added a suggestion about Hmong medical issues in Merced. That was the topic the editor of The New Yorker picked, so I quit my job and headed out to California, where, from other doctors at Bill's hospital, I heard about Lia Lee's case. What I thought would make a magazine article ended up as a book that took 8 years.
Q: How long had the Lee family lived in California before Lia's seizures developed?
In the U.S. for just under 2 years, in California for somewhat less. (They originally settled in Portland, Oregon.)
Q: How are seizures understood by the Hmong culture?
There is no monolithic view of seizures, since there's a wide range of education and assimilation among the Hmong — much more so now than during the '80s, the period my story primarily focused on. But for traditional Hmong who have retained their animistic beliefs, epilepsy (qaug dab peg, literally translated as "the spirit catches you and you fall down," which became the title of my book) is caused by a malevolent spirit called a dab, who captures someone's soul and makes him or her sick.
Epilepsy is recognized as a serious illness that can cause great suffering, but it is also seen as a distinguished affliction, since (as in many cultures) Hmong epileptics often grow up to become shamans. Their seizures are viewed as an altered state, a potential point of entry into the spiritual realm to which the rest of us are denied access.
Q: Why were Lia's parents motivated to take her to the hospital in California for treatment but not willing or able to maintain her medications at home?
They had had a good experience with Western medicine while in a Thai refugee camp. One of their children had died after their difficult flight on foot from Laos; they took two other ill children to the camp clinic, where antibiotics rapidly cured them. They hoped for a similar result when Lia's symptoms of epilepsy began, and Lia's status epilepticus was usually resolved rapidly at the Merced hospital. Her parents found it difficult to grasp the idea of a chronic problem, though -- one that had to be continuously medicated but could not be cured. They believed that if Lia's doctors were competent, they should be able to solve the problem as quickly and decisively as the antibiotics had solved the problem in Thailand.
In addition, several factors made it harder for them to follow the doctors' instructions at home. The medication regimen changed frequently, and because Foua and Nao Kao did not speak or read English they could not read the instructions. The pills were hard to administer and some of them had unpleasant side effects. And their feelings about Lia's illness were ambivalent because of the high status many epileptics enjoy in traditional Hmong culture.
Q: Can you talk a little about Lia's parents as parents?
Although Foua and Nao Kao frustrated Lia's doctors by only sporadically following the medication regimen they had prescribed, within the sphere of their own culture they were wonderful parents. They never let their children cry, loved them to distraction, carried them in homemade Hmong baby carriers when they were infants — in short, doted on them. The results of their fine parenting can be seen in Lia's siblings, who have grown into intelligent and well-adjusted adults. (Four have attended college, quite a feat considering that Foua and Nao Kao are preliterate even in their own language.)
Q: Can you talk a little about Lia's doctors (Neil Ernst and Peggy Philp) as doctors?
They are as excellent in the medical sphere as Lia's parents are in the parental sphere. Neil and Peggy are warm, competent, highly skilled clinicians, both Phi Beta Kappa graduates of Berkeley who chose Merced because they wanted to serve the underserved. If I lived there they would be my children's pediatricians. Communication between them and the Lees was defeated when the culture of medicine ran up against the culture of the Hmong: two very strong, stubborn, uncompromising cultures. The impasse had nothing to do with any professional or personal shortcomings on the part of these excellent doctors.
Q: Were there issues beyond the language barrier that made it difficult for Lia's doctors to work with the Lees in caring for Lia?
There was a profound cultural conflict engendered as much by the culture of medicine as by the culture of the Hmong. Because there were no house calls (no old-fashioned GPs any more), Neil and Peggy never saw the Lees on their home turf. The Lees were anxious, defensive, and often hostile when they were on unfamiliar ground in the hospital. And of course the lack of good interpreters greatly compounded the problem.
Q: Do you think Lia's doctors believed that they were equipping her parents to care for Lia successfully?
They could see that Lia's parents, though diligent in every other way, were not giving Lia her medications properly, but, as doctors, they were doing everything they knew how to do. They gave Lia excellent care themselves. They explained Lia's regimen to the Lees as well as they could, given the interpreter problem and the Lees' inability to read written instructions. They also consulted with neurologists and other specialists about Lia's medical issues. In other words, they did all the right things from a medical standpoint, but they could not figure out how to communicate more successfully or how to persuade the Lees to be more "compliant."
Q: Do you know how their experience with Lia has shaped the Lees' view of Western medicine?
It has worsened. The Lees started off with profound suspicions about the motives and abilities of Western doctors, and those suspicions only deepened. However, that does not mean that they dislike all the doctors they dealt with. They are very fond of Neil and Peggy.
Q: What do you think is the most important lesson for doctors in this story?
The most important lesson is the necessity of seeing a case from the patient's point of view. Even if the doctor's knowledge exceeds the patient's by an incalculably huge factor, that knowledge will do little good if the patient does not trust the doctor or if the doctor does not understand the patient. The best remedy for both those problems is for the doctor to look at things from the patient's perspective (which may be culturally influenced).
Q: What do you think is the most important lesson for patients in this story?
To believe that doctors really do have their patients' best interests in mind.
Q: How has writing this story affected your life?
The important part for me wasn't writing the book and having it published. It was the opportunity to meet the Lees and spend a number of years thinking about Hmong culture. I became a different sort of mother as a result (basing my care of my children on Foua's). The importance the Hmong place on the extended family undoubtedly has made me spend more time with my own parents and expend more effort trying to persuade relatives to move nearby. And although my own thinking has become neither less rational nor more spiritual, my respect for nonintellectual ways of looking at the world increased a thousandfold.