WARNING: SPOILERS AHEAD, If you don't want to know how things turn out, don't read.--MS
As the title implies, this 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, and most particularly Western medicine.
I doubt there's any American today who doesn't harbor at least some ambivalence about how medicine's practiced in the United States, and I'm not just talking bills and insurance. Foua and Nao Kao Lee didn't trust the doctors who tended to their baby daughter Lia when she began to have seizures; they worried about doing 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 that soul. When did you last see an American doctor do that?
Even had the doctors who cared for Lia known of this tenet of the Lees' belief system, they probably wouldn't have given it consideration. As things were, they knew little about their patient's family: not only did the Lees not understand English, but the Hmong culture is so far from that of anything remotely American, the doctors hadn't the ears to hear, eyes to see, or consciousness to absorb any of 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 no stranger than those of the Catholic or Jewish faith: all utilize symbols, whether it's wine standing in for the blood of Jesus, drops of wine spilled onto a plate for 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?
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. By allowing them full humanity, she brings them vividly to life the same way a novelist does her characters--though non-fiction, thi book is as compelling as a great 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 have suffered persecution for centuries. Much like the Roma or the Jews, they're a migratory tribe without a homeland--but I doubt they ever felt quite as displaced as they did when they got to the United States. Because they helped the CIA in Laos, the Hmong were promised they'd be welcome in the U.S.--but when the troops left, they jetted only generals and hotshots 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 waited to be rescued by the Americans. Those who were finally brought to America were `resettled' all over the map, 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 tend to have large broods of 12 or 13 children, who they deeply adore, and they view disability as a consequence of some parental transgression, for which they atone by treating children with disabilities extra lovingly. They're used to living near relatives, who they see frequently, if not daily. The diaspora of the Hmong represented unspeakable hardship--which they resolved with what they call their `second resettlement.'One family 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 healing rituals. They'd end up where all pioneers do, in California, and send news to relatives in Detroit or Chicago or Billings, Montana. Eventually, pockets of Hmong were clustered in a few 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. Here their culture and community thrived, parallel to the dominant culture, assimilating as little as possible. One way they did have to assimilate is medically: since 80% receive some form of government assistance, social services closely monitor them. 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 did occur, for a period of time, to Lia Lee.
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 of 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.
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 kinds of anti-convulsants at the various times of day prescribed, not realizing 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 does not die, and by the end of the book, years after being declared brain dead, she's still alive. As I write this, Lia Lee is still alive and lovingly cared for by her mother and siblings. Her medical condition has not changed. Her father, Nao Kao Lee, died in January of 2003.
This book enriched, and possibly changed, my life. I can't recommend it too highly.
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Which would have been more discriminatory, to deprive Lia of the optimal care that another child would have received, or to fail to tailor her treatment in such a way that her family would be most likely to comply with it?Highlighted by 3,392 Kindle readers- The Hmong never had any interest in ruling over the Chinese or anyone else; they wanted merely to be left alone, which, as their later history was also to illustrate, may be the most difficult request any minority can make of a majority culture.Highlighted by 2,956 Kindle readers
- American medicine had both preserved her life and compromised it. I was unsure which had hurt her family more.Highlighted by 2,328 Kindle readers
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Great Book but don’t buy from Amazon
Reviewed in the United States on December 20, 2022
Great book and bought another copy for a gift but arrived wet, peeling and with dirt and a large piece of plastic in the book. The one star is for the for seller and not the book.
Reviewed in the United States on December 20, 2022
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