Epileptic...or Shaman?

This is a book that everyone with even the slightest interest in patient care should read. It tells the story of Lia Lee, a Hmong girl living in Merced, ravaged by epilepsy since her first seizure at the age of three months.

At that time, her parents thought the seizure was caused by a loud sound that so profoundly frightened the child's soul that it fled her body and became lost. During the next several months of her life she had at least 20 more seizures.

Anne Fadiman clearly and simply describes the cultural differences and the resulting conflicts. She deftly weaves these elements together to present an understandable picture of each side. More importantly, Ms. Fadiman does this in the transparent, nonjudgmental manner of a benign observer. She obviously appreciates and respects the feelings of the people involved. There is no question that she developed warm friendships with all the people she writes about, and those friendships show in the writing. These characteristics caused me to feel a sense of profound admiration as I finished the book

The Hmong people regard seizures with ambivalence, best revealed in this description of the family's attitude toward Lia's illness: "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."

If these religious attitudes were not enough cause for conflict we can add that, of the 40 or so doctors, nurses and county agency employees who had dealt with Lia and her family and with whom the author spoke, several had a vague idea that "spirits" were somehow involved, but only one (quoted above) had actually asked the Lees what they thought had caused their daughter's illness. Complicating matters was that the Lees spoke no English and none of the doctors or other medical personnel spoke Hmong. During Lia's first two hospital visits no Hmong interpreter was available. Since she had stopped seizing by the time she was seen, her condition was misdiagnosed at each visit.

But when an interpreter was present, the duration of the diagnostic interview automatically doubled, tripled, or even centupled. Medical terms ordinarily having no Hmong equivalents, laborious paraphrases were often necessary. The recommended translation for parasite is 24 words long; for hormone, 31 words; and for X-chromosome, 46 words. Unfortunately, even with a perfect verbatim translation, there was no guarantee that either side actually understood the other. One doctor said there was an infinite difference between dealing with the Hmong and anyone else because they didn't have the same concepts that he had. You couldn't explain diabetes because they didn't have a word for pancreas, much less an idea for pancreas.

Although there was considerable difference on both sides, the basic difference in attitudes is well illustrated by the following examples of the feelings of the Hmong people and of the medical personnel caring for Lia:

Txiv neebs (shamans) often spent as much as eight hours in a person's home; doctors forced patients to come to the hospital, and then spent only 20 minutes with them. Shamans never asked questions; doctors asked rude and intimate questions, right down to their patient's sexual and excretory habits. Shamans gave immediate diagnoses; doctors demanded blood, urine, or feces samples, took X rays, waited days for the results — and then, sometimes were unable to make a diagnosis.

Shamans didn't undress their patients; doctors had patients take off all their clothes, and sometimes put fingers inside women's vaginas. Shamans knew that to treat the body without treating the soul was an act of patent folly; doctors never even mentioned the soul.

One of the pediatricians who was a primary care giver said, "The best thing I could have given Lia's mother was compassion, and I knew that I wasn't giving her any. There was 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 — ohhhh, you would just get so frustrated! When she came in 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."

If this brief review doesn't intrigue you, read the book's preface. You'll surely enjoy the book, everyone I know has. It won the National Book Critics Circle Award and will remain in your memory.

peniston@mcn.org