As the title of Anne Fadiman’s The Spirit Catches You and You Fall Down implies, the book offers an alternative perspective of epilepsy, or seizures, as seen through the lens of the Hmong people. It also provides a fresh view of Western so-called civilization itself, particularly Western medicine.
When my son Daryl was newborn and diagnosed with a chronic condition, my husband and I gathered second and third and fourth opinions, taking him to every recommended neurosurgeon within a hundred-mile radius. We would sit in their offices, I as caretaker feeding or comforting my days-old infant while the men conversed. At some point during the consultation the doctor would measure Daryl’s head. With his meaty hand he’d push down on my baby’s fontanel; having been raised with fearful admonitions to never touch a baby’s ‘soft spot,’ I nearly fainted. I was convinced the doctors were mad.
That is the way Foua and Nao Kao Lee must have felt about the doctors at Merced County Community Hospital who tended to their baby daughter Lia when she began having seizures—but while I worried about damage to my baby’s head, the Lees worried about damage to their baby’s soul. In the Hmong culture, sickness is a signal of disturbance to the soul, and healing is a matter of tending to it. When did you last see an American doctor do that?
Even had the doctors who cared for Lia known about the Lees’ belief system, they probably wouldn’t have given it much weight. As things were, they knew very little about their patient’s family: not only did the Lees not understand English, but the Hmong culture is so far from anything remotely American, their doctors had neither the ears to hear nor the consciousness to absorb it. To them, as to many Americans, the Hmong are a “Stone Age” people, ignorant and superstitious. Certainly Hmong rituals and healing ceremonies are strange and arcane—but not any stranger than those of the Catholic or Jewish faith. All utilize symbols, whether it’s wine standing in for the blood of Jesus, wine drops spilled on a plate to symbolize Egyptian plagues, or a wooden bench transformed into a winged horse carrying a healer in search of a sick person’s soul. Why is it that the good citizens of the United States laugh only at the latter of these rituals?
Writer Anne Fadiman decided to look at American medicine through the prism of Lia Lee’s sad story. She discovered, and conveyed to readers, the richness of Hmong culture, devoid of sentimentality. Fadiman is careful not to imbue the Hmong with the kind of romanticism that European Americans tend to hold about Native Americans: she does not evade the fact that they can be extremely difficult and intractable. By allowing them full humanity, she brings them vividly to life in the same way a novelist does her characters—Spirit, though non-fiction, is as compelling as a good novel.
The Hmong came to America in the 1980s, courtesy of war in Southeast Asia. They’d been living in the mountains of Laos, to which they’d migrated from China. The Hmong never assimilate into the culture of the country they inhabit, and as a result they’ve been persecuted for centuries. Like the Roma or the Jews, they’re a migratory tribe without a homeland—but I doubt they ever felt as displaced as they did when they got to the United States.
Because they’d helped the CIA in Laos, the Hmong were promised they’d be welcome in the U.S.—but when the troops left, only the generals and hotshots were immediately jetted out of the country, leaving the rest of the populace to fend for themselves. With the Laotian army hunting them down as enemies of the state, Hmong families set off on foot, carrying whatever they could manage. Many, particularly the old and the young, died along the way. Most possessions were shed, too heavy to carry, on the days-long journey. When they arrived in Thailand they were placed in refugee camps, where they awaited rescue. Those finally taken to America were ‘resettled,’ without regard for family cohesion or transferability of survival skills, in Detroit, Minneapolis, Utah, Vermont—the Hmong were distributed all over the country so as to not unduly ‘burden’ any one locality.
The Hmong are a family-intensive culture. They tend to have large broods of 12 or 13 children, who they deeply adore. Disabilities are viewed as a consequence of parental transgression, so disabled children are treated especially well as part of parental atonement. Families are organized into clans. Marriage within one’s clan is strictly taboo, so to live among one’s clan only can be problematic. They are, however, accustomed to seeing relatives on a daily basis. The diaspora of the Hmong represented unspeakable hardship—which they resolved with what they call their ‘second resettlement.’
A Hmong family, bewildered by urban living, would pack up a hastily purchased jalopy and drive off, looking for a spit of land hospitable to growing vegetables and the herbs necessary for their healing rituals. They’d end up where all pioneers do, in California, and send word to relatives in Detroit or Chicago to come join them. Eventually, pockets of Hmong were clustered in several locations around the country. Of these, Merced, California, where the Lee family settled, is one of the largest.
About one in every six residents of Merced, formerly an all-white rural area, is now Hmong. As they’ve done throughout the centuries, their culture and community thrived, parallel but not assimilating to, the dominant culture. One way they had to assimilate, at least partially, was medically: with 80% receiving government assistance, social services closely monitor these families. American social workers do not have a high level of tolerance for cultural difference, and many Hmong practices, like gardening on the living room floor, or animal sacrifice, put parents in danger of losing their children to foster care—an unthinkable consequence that befell Lia Lee for a short period of time.
The Hmong had heard about Western medicine even before arriving on these shores. They approved of antibiotics–swallow a pill and get well in a week—but not much else. Surgery was anathema, since cutting the flesh or removing organs risks the flight of the soul. When their daughter Lia fell into the hands of the medical establishment, the Lees suffered deep agony over every procedure, from IV insertion to spinal taps. Reading this, I couldn’t help but remember my own experiences: the pushing on the fontanel, which to this day still makes me queasy; the insertion of dye into my baby’s head so fluid blockage would show on an X-Ray; starvation prior to surgery; and the five-hour operations: although I didn’t actually see the latter, I did feel them. I know what the Lees endured—and for them it had to be a thousand times worse, what with their inability to understand the doctors’ explanations, and a belief system opposed to any cutting of the flesh. Several studies of the Hmong show that they consider “difficulty with American agencies,” social as well as medical, more problematic than their war memories.
Fadiman explores the interactions between the Lees and their daughter’s medical caretakers in exhaustive detail. Whenever Lia suffers a setback, the Lees blame the doctors and their methods. The doctors accuse the Lees of noncompliance when they fail to properly dose Lia with three different anti-convulsants at the correct times, not knowing that the Hmong don’t even use clocks. Fadiman presents a balanced picture, blaming neither the family nor the hospital, but cultural barriers, for what goes wrong—and eventually things do go terribly wrong. By the age of four Lia is brain dead. The hospital hooks her up to feeding tubes, expecting her to die within days, but the Lees insist on taking her home, where they disconnect every tube and treat Lia as a favored family member. They take turns carrying her around on their backs; like a mama bird, Foua pre-chews her daughter’s food and feeds it to her orally; they sacrifice pigs in healing ceremonies; and Lia sleeps with her parents every night. To the astonishment of the medical community, Lia doesn’t die: years after being declared brain dead, she’s still alive and still lovingly cared for by her mother and siblings. Lia’s medical condition hasn’t changed. Her father died in January of 2003.
The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and The Collision of Two Cultures widened my perspective on medical practice and cultural differences. I highly recommend it.
For the latest available information on Lia, see comments below. If anyone has any more news, please do share it in the comment boxes.–MS.
Read from another blog on this book
Just discovered: A Hmong Woman’s Blog
- Humanity: CIA’s secret war ally, Hmong, denied veterans cemeteries, to save money & space (thaiintelligentnews.wordpress.com)
- Fresno Journal: A Hmong Generation Finds Its Voice in Writing (nytimes.com)