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The Spirit Catches You

The Spirit Catches You and You Fall Down:
A Hmong Child, Her American Doctors, and
The Collision of Two Cultures
By Anne Fadiman
Farrar, Strauss and Giroux 1997 341 pp

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

Here are resources on all things Hmong.

Just discovered: A Hmong Woman’s Blog

58 responses »

  1. Thank you for this. I live in one of those communities — Missoula, Montana — where these people have settled. They bring us their art, and their produce every summer Saturday at the Farmers’ Market — but I know little about them.

    Thanks for commenting. I hope you’ll read the book.–MS

  2. Just a quick correction to your excellent post. Despite the term being used a few times in the book, Lia was never “brain dead.” Brain death is death, so you can’t be declared brain dead and then be waiting to die. Lia is in a persistent vegetative state; a state where the only brain activity is very basic reflexes, such as breathing, and sometimes, as is her case, swallowing.

    Thank you for the correction. From your use of the present tense, I assume Lia is still alive. I wasn’t sure anymore.–MS

  3. Is there anyone who knows the status of Lia in April, 2009? The latest update I can find is 2006. Information would be appreciated.

    Carol–From Kari’s use of the present tense when referring to Lia in the comment above, I assume she’s still alive, but that’s not much to go on. I too would like this information and I think a lot of people would. This happens to be the most visited post on my blog. Thanks for stopping by.–MS

  4. I was able to make contact with Dan Murphy who emailed back to me on September 20, 2009:

    Lia, at least as of a few months ago, is still alive. Her father died a few years ago. She was still being cared for by family members in their home the last time I had contact. Anne Fadiman herself continues to do well, Neil Ernst and Peggy Philp, the pediatricians involved, are in a group practice with me in Redmond Oregon, and still travel to give lectures on the experience. They are both doing well, also.

    Janice–I totally appreciate your letting me know about this. It’s amazing to me that Lia is still alive. Thanks so much for the information.–MS

  5. I just finished the Spirit Catches You and You Fall Down, for an ethics class. What a powerful book! We see the problems with non-English speaking patients in our hospital and it is very frustrating. We do have the language phone, but sometimes that doesn’t help. I came to this site because I too was curious if Lia was still alive. Now I will be able to include this info in my paper about the book.
    Jo Ann

    Good luck with your paper, I’d love to read it when you’re done.–MS

  6. I am as well reading the book for my cultural anthropology class and was wondering if Lia was alive! I’m most happy to find out that she is. I found this book most interesting because of the family mostly and the interesting facts that came every other chapter. I find that we can use this book as an example of our own issues that is happening in our American politics currently. I have the Lee’s in my prayers and wish that no daab will cause them harm! Thank you for your blog on the book!

  7. I am currently reading When the Spirit Catches You in my Social Work class, and I am very glad to hear that Lia is still alive! Thank you so much for this blog!
    I would recommend this book to anyone! Especially anyone going into the field of medicine, anthropological work, social work or psychology!

  8. Marcy, this is a wonderful review, bringing the personal and the political together. I read the book because I am starting a new job providing home care to Cambodian immigrants.
    The book gave me a good point of departure. Listen, take it slow, and don’t assume.
    It’s hard to bear when children suffer, harder when we can’t make it right.
    I wish your son and all your family the best.

  9. I just finished the book–from the first chapter, I was hooked, where Anne describes the contrasts in the birthing process in a Hmong village and in a hospital….I’m also a physician , and having worked with Indochinese refugees from 1988 to 1993 in the Philippines, Thailand and Vietnam, in first asylum camps as well and “refugee processing” centers, many of the struggles were familiar though none as “dramatic” as the cultural variations described, which I suppose comes with the extent to which both cultures share common experiences and meanings. I hope there is a follow-up book someday, and Spirit should be required reading for medical, nursing and anthropology courses.

  10. I recently finished this book. I am a physician and encounter patients from very different geographical and cultural backgrounds in my work. It is presumptuous to assume that we can adequately train individuals to embrace all disparate views on the causes of illness and incorporate these into our algorithms of health care. The modern world creates all manner of displacement of individuals into environments foreign to their culture and beliefs. That the Hmong strongly resist assimilation is not an indictment on western medicine. Were they not displaced to the US, their child would have, in all likelihood, never encountered allopathic practitioners. The outcome might have been better, worse, but would have been clearly different. The lesson of the book is not lost on me, as it is the task of every “healer” to try to bridge the gap between the understanding of the patient and the prescription of the practitioner.

  11. What became of Foua and Nao Kao’s 8 other children, Chong, Zoua, Cheng, May, Yer, True, Mai and Pang? Are they happy? Healthy?

    I don’t know any of the answers–maybe you can find them on one of the sites about Lia Lee or the Hmong.–MS

    I am the grand-daughter of Jewish immigrants, and while growing up, I often heard stories of the hardships my family endured in order to give me a better life. I wonder if the Lee family feel their hardships and sacrifices have been worth it. Has their next generation achieved a better life?

    My family history is the same as yours. Unlike our grandparents, the Hmong did not come to the US seeking a better life–they probably didn’t want to come here at all. Rather, they were forced to flee Southeast Asia to save their lives, as they were being hunted down for having helped America. Considering how different the American experience was for our ancestors than it was for the Hmong, I’d guess the Lee family and most Hmong have a very different perspective than those immigrants, who desperately wanted to come here.–MS

  12. I have just finished reading Ms. Fadiman’s thought-provoking book. After reading these posts I find I must agree wholeheartedly with Dr.Kemalyan. This child and her family received years of free medical care which most likely continues to this day if she is still alive. Her life expectancy would have been significantly reduced had she not been born here. The medical community delivered the best care possible at the time in the face of many obstacles, not the least of which were huge cultural differences. The blame for this child’s poor outcome as she and her family encountered our Western Medicine model for treatment must be shared by her family as well as her caregivers. These days our culture seems more than willing to place the entire burden for ‘heal me’ on the medical community while taking little or no responsibility for our own well-being.

  13. I’d like to comment on Judy’s comment above. Dr. Kemalyan states that if Lia had not been treated by allopathic practitioners, her treatment may have been “better, worse, but would have been clearly different.” He does not state that her life expectancy would have been significantly reduced, as your post suggests. In fact, he leaves open the possibility that her outcome could have been better.

    Although I agree with Dr. Kemalyan’s statement that it is presumptuous to assume we can train practitioners to embrace all disparate views of illness and incorporate them into practice, I would say that the goal would not be to “embrace all” views, but rather be open to the views of the community at hand.

    I don’t view the book as an indictment of western medicine. It’s an affecting account of the strengths and limitations of western medicine and a discussion of the vital role played by family and culture.

  14. Ahhh. So frustrated, I am left wanting more! The end is incomplete. I just finished the book minutes ago and found myself googling for more information as many of you did. Each website only provides another website to visit but without information. What a fantastic book, edgy, informative and heartwarming. I only wish there was some way Anne or a website would give us the happy ending we all want.

    Heather–I don’t think there is going to be any happy ending, or at least not one that’s trouble-free. As Marge Piercy wrote at the end of one of her novels, “The End…of one set of problems is the beginning of another.” That said, I feel the same frustration as you. With so much interest in this book, you’d think Anne Fadiman would’ve kept the public informed, but she’s posted no updates on the family or Lia. As far as anyone knows, she’s still alive, but we have no idea of the quality of that life, or how the family or the Hmong communty in Merced is faring. What can we do? Those responsible for bringing us news are more interested in humiliating Sandra Bullock than in following a real human interest story.–MS

  15. keri hart lusher

    Though I want to know more about Lia Lee’s condition, I doubt Anne Fadiman feels she has the right to expose the family to any more scrutiny. I got the impression that Foua Yang is fiercely private, and would not enjoy the spotlight that would follow an update on Lia.

    Good point.–MS

  16. I too have just finished reading the book and can say I am thoroughly happy with the astounding content leaving me yearning for more! I am a first generation Hmong American born in the states and the book was all too familiar. My eyes welled up and sometimes streams of tears covered my cheeks throughout my reading. I empathized with the Lee family and at the same time was better able to understand my culture and why my parents raised us as they did. My family as well as all Hmong families I know have seen all struggles as described in Anne Fadimans’ book. Heartache to hardships but all have mostly overcome them with time and…the Hmong support system… Anne Fadiman’s perspective of the clash of cultures is right on and I suggest that not only prospective doctors, nurses etc read the book but all Hmongs and anyone with a heart or open mind. Living in America has to some degree diminished the core Hmong values and traditions but it’s inevitable. I am still strongly rooted to the Hmong values and traditions but of course with an American edge.

    MS…I would like to commend you for initiating such a wonderful site and blog. It’s great to hear everyone’s point of view and know that open-minded individuals still do exist! :)

    Thank you, Blia, for your kind words, and for your invaluable perspective.–MS

  17. Martha Hardison

    I just finished the book last night and wanted to know more about the family and Lia. I am not in any fields, (i.e., medical, community, etc.), but loved the book. I picked the book up in a thrift shop, and from the cover, thought it would be good reading. I was awed by the story. I have marked this site on my computer, and will check back often to see if anyone has an update on Lia. Thank you MS for this blog-site.

  18. I just finished reading this book for my Dental Hygiene program in Minneapolis, MN. Having recently moved here from eastern MT I had never encountered the Hmong people before. Although there was initial groaning in class when we were told that we had to purchase and read another book for our Community Dental Health class- I know that none of us have regretted it! There were so many invaluable lessons to be learned. I am glad to hear that Lia is still with us! Thank you for sharing her story!

  19. Thank you so much for making this blog so that the readers of this lovely book can get updates and discuss it. I am not a doctor or part of the medical community. I am an education student who read this book to analyze the clash between the cultures and how the American doctors dealt with the Hmong population. I have gained great insight of how to communicate and listen to other cultures in order to serve their best interests. I thought you might appreciate another point of view. Again, thank you for the lovely page. I too was looking for information as to if Lia Lee was still alive, and this is by far the best page I have come across.

  20. Okay, so she is still alive. The book author and assorted pediatricians are lecturing on the case, her father is dead. The family is private.

    Her mother wept when she only weighed 37 pounds about how hard things were.

    So now we read and discuss the book, while somewhere her mother is still weeping.

    The book had a fake happy ending. The family did not.

    I don’t recall a happy ending. And are you saying that somehow it is wrong for us to read and discuss the book while the family suffers? We aren’t hurting Lia Lee or her family; in fact, there are lessons to be learned from their experience. I’m sure that’s why the author wrote the book.–MS

  21. Anne Fadiman’s very insightful book is, I think, a great contribution to the problem of understanding other cultures. I don’t think that there is any right or wrong. The possibility of trying to understand another point of view is a positive step in relating to people who think differently from ourselves. My cousin was married to Anne’s mother for a brief period of time during WW II. He and Annalee were both war correspondents. He was killed shortly after they were married. It is interesting that Anne followed in her mother’s literary tradition. She is using her writing skills for the greater good. Brav0!

    Thanks for the interesting news. I agree that the book is a positive contribution.–MS

  22. I also was driven to learn what has happened with Lia Lee in recent years. According to this Feb 2010 interview with Anne Fadiman in “Seven Days” journal, Lia is now twenty-seven, still living at home, still in a persistent vegetative state.

    It is a good interview, well worth reading.

    http://www.7dvt.com/2010influential-author-discusses-how-culture-clash-became-tragedy

    Lauren–Thank you so much for this. I just read the interview with Fadiman, and recommend that everyone interested in this topic/book read it too. Just amazing that Lia Lee is 27 years old.–MS

  23. Mary March said: “The book had a fake happy ending. The family did not.”

    The author made it very clear that while Lia Lee was well-cared for as a human vegetable, and that she was relatively well off, her parents were still distraught over what had happened to her, and that her parents had lost trust in American medicine. The husband and wife doctor felt pretty awful about what happened to Lia Lee too. It also caused a lot of trouble between the Hmong and the medical community.

  24. Judy: The author clearly said that both the medical establishment and the Lees were trying to help the girl; it was the inter-cultural conflict, caused by friction from both sides, that caused Lia Lee to go brain dead. The author isn’t saying that the medical establishment should shoulder all of the blame.

    Also the author said that Western medicine likely saved Lia Lee’s life and ruined its quality. Lia may have died if she had stayed in Laos, but at the same time the cultural conflict also lead to the brain death. It’s an odd paradox.

  25. I totally agree with you that there was no fake, happy ending to this book. I thought it was quite authentic. Thank you for visiting my site and for posting your opinion here.

  26. My book club discussed “The Spirit Catches You” last night. The hostess went to the trouble of contacting MCMC who didn’t have any information about Lia Lee notwithstanding privacy concerns. She tried the Hmong Cultural Center–no answer. Is there any way to contact Dan Murphy so we can satisfy our curiosity as to whether Lia is alive? Or do you know the answer? The posting by Janice K in September 2009 indicates Lia is still alive, but that was a year ago. Thanks.

    Sorry, but I don’t know any more than can be found online, at the author’s site for the book, and various other places. If you learn anything, I’d appreciate hearing about it. Thanks for visiting my site.–MS

  27. I am a nursing student also blessed to have been assigned this book– but I have one burning question…. and it may be dumb to even ask… but if the Hmong people are so greatly supported by their families and “clans,” and they took Lia home, with intentions to care for her as they have cared for the rest of their ancestors in years before, WHY DID THEY GO TO THE HOSPITAL? I just don’t understand why they even went if they knew they’d care for her at home, and successfully do so, as we saw in Lia’s story.

    It’s been awhile since I read the book, but it seemed pretty self-evident that Lia’s parents initially took her to the hospital as any parent would whose child was having seizures or other unexplained ailments. They continued to work with the medical establishment in the hopes, I am surmising, that things would improve. It was only at the point when the hospital, if I remember correctly, was going to keep Lia hooked up to machines until she died — and they expected her to die very soon — that the Lees took her home. At that point they felt she’d be better off with them.

    I don’t find their behavior unusual. In fact, many people born and raised in America who’ve used the medical system their whole lives frequently take patients home at this point, to die at peace among family.–MS

  28. This is in response to Mary March. My intentions are not to be rude, but it appears as though you have missed the point about the book entirely. Or should I say the “points”. I would suggest re-reading the book, combined with deep thought and a fleeting moment of imagining yourself in Lia’s parent’s world. If you still find the book baseless and without validity, I am sure “Dancing with the Stars” is on television this week.

    Good day.

    Love it! Thank you so much for this comment.–MS

  29. I just finished reading The Spirit Catches You in a book group. I’ve actually read it a couple of times before, and have found it profoundly moving each time. After discussing the portrayal of the Hmong culture, I pointed out that there was a different culture represented as well — that of the mainstream Western medical community. Your comments regarding your experience with your baby in a medical setting resonated with me; I’ve also experienced some of that with one of my babies and thought of it when I read Fadiman’s book. My husband and I were native English speakers, raised in the culture, well-educated … I couldn’t imagine what it must have been like for the Lees. My experience was in 1996, and I truly hope that some things have changed since then.

    On a different note — I see you have a link to Bill Brent’s blog. Are you a Friend (as in Quaker)?

    Finally, if you have not read Anne Fadiman’s other writing, I highly recommend the extremely charming Ex Libris.


    Suzy: Thank you for your comments. I know that things changed for parents and their hospitalized children between 1965 and 1996, so it’s somewhat dismaying that you say you hope they’ve changed since ’96. No doubt they have, but probably not as much as in those 31 years I cited — or so I thought.

    On another note, no, I am not a Quaker, just happen to know Bill from the world of writing and teaching. I didn’t even know he was a Quaker.

    Also, thanks for the pointer to Fadiman’s other book; I’ll check it out.–MS

  30. I am now reading Alice Munro’s The View From Castle Rock in which the sons go off and the father knows her will never see them again. That is how I felt when I came to the end of Fadiman’s marvelous book – as though Lia, whom I had grown to love, just left and I would never know of her again. Thank you for this site, and the updated news from the Oregon poster who works with Philp and her husband. Lia is alive. Foua continues to care for her daughter. Western medicine continues to do its imperfect best. All of us stumble toward more cultural awareness and understanding. And we are all richer for this human story….

  31. I just finished The Spirit Catches You… and am so touched at the magnificence of this book.. and the tragedy of the situation from so many different sides. I found myself literally holding my breath through Lia’s terrible final epileptic episode and the final chapter of the book. I had no idea of the Hmong’s role in the war in Laos.

    I currently work with a large refugee family and learned so much from the book that will make me more sensitive to their spirtual life and hopefully enrich future conversations between us. Thank you for the update on Lia.

  32. I am interested to know if any of the readers can write their opinion regarding what did the US healthcare system do correctly in the care of this child and her family? What did we do wrong?

    Brad: See Lisa’s comment, several down.–MS

  33. I’m coming in really late to the discussion; I just finished re-reading the book and went looking (like I did after the first reading a year or more ago) for updates on Lia and her family.

    The thing that struck me both times I read the book is that the problem occured not because one side was right and the other wrong, or even because of “cultural differences” but more from lack of communication and ignorance on the part of both Lia’s family AND the doctors. If the doctors had known more about Hmong culture and beliefs, it’s quite possible that they could have explained Lia’s medical condition and therapy to the family in culturally-appropriate terms. Lia’s disease might have become a dab called “epilepsy” by her doctors, therapies might have been described as needing precision to keep the dab at bay, etc etc etc. It seems entirely plausible that the family would have complied with the medical regimen if they had been made to feel that they were a team with the doctors in fighting the dab. Doctors could have even “prescribed” traditional Hmong therapies that would do no harm to foster this feeling of being a team with the family.

    Of course, that rarely happens even with American-born & educated English-speaking patients; we have kind of a fast-food mentality to health care. Talking with a patient for an extended period of time costs more money, so it doesn’t happen.

    What the US healthcare system did correctly in this case, to answer Brad, is to prescribe for Lia the most appropriate therapy for her condition. What it did wrong was to fail to take the time and effort needed to learn, understand and address the peripheral issues that had to be addressed for that therapy to succeed. Which it turns out is where the US healthcare system has a glaring blindspot with regard to pretty much all patients – in treating conditions rather than people. It just gets magnified extremely when it’s overlaid with cultural differences and inability to communicate.

  34. I have spent the past 5 years doing bachelor’s level social work (case-management) and just read this book as a summer reading requirement for the MSW program I have just been accepted into at UC Berkeley. My greatest hope in pursuing a masters in social work was that it would help to educate away the bitterness and frustration that had begun to creep in. With this amazing book as my first step in grad school that hope is already becoming a reality. I see from this post that it is required reading for many “care-giving” fields, what a blessing!

  35. I understand where “GA” is coming from actually, and I actually think it’s quite pretentious to shrug off his/her question with a simple “the answer is completely self-evident in the book – go read it again.” I also had the question of why Lia’s parents went to the hospital – why didn’t they get a Shaman from the start? Certainly if this disease was well revered in Hmong culture, and if children with this disease often became Shamans, who better to ask for help than a Shaman? Also, why did the parents presume to understand American medicine to the point that they decided to just prescribe Lia whatever doses of whatever drug they did or did not feel like giving her that week? They do not seem to be respecting American culture very much, but they continued to use American medicine and bring Lia to the hospital.

    I realized though, that because of American policies, eventually Lia probably would have been removed from the Lee’s home by the government under the suspicion of abuse. Not seeking medical attention for seizures, I’m sure, would not have gone well for them. But I think this touches on the main point in the book – it is more American policy that is flawed than anything else. Perhaps the Lee’s felt that they had to comply with the doctors orders to some degree, or else Lia would be taken away from them. Perhaps they realized that this was somewhat of a double-edged sword, no matter what they did, and they just wanted to do whatever they could at the time to help their sick child. I think that’s what any of us would do.

    Thank you for your comment, Chrissy, but I must defend myself here–I didn’t shrug off GA’s question with a simple “Go read it again”; in fact I didn’t use those words at all. With the risk of sounding sarcastic, which I don’t mean to be, go read my response to her again: it’s much more thoughtful and involved than that.–MS

  36. By the way – I loved the book, and thought it was a huge eye-opener. And I also really appreciate this site, and the information it offers those of us who are still curious about Lia Lee. Thanks.

  37. I am utterly speechless after reading this book. I don’t know whether to laugh or cry or breathe a deep sigh of relief. I say this because I am Hmong. Although I have been fortunate enough to grow up in the US, I find that I am more Hmong than American. I believe Ms. Anne did amazing job of capturing the essence of being Hmong. I could hardly believe the details she included in the story-embarrassing to admit- because they’re details that I omit to tell my colleagues because I don’t think they would understand. It made me begin to reflect on my own family history and personal struggles growing up in the US.

  38. Thanks for this heartfelt comment. This book seems to touch everyone, for different reasons. –MS

  39. Unfortunately, I can’t say that I’ve read the book, but after reading all these comments I’m going to. Thanks for making it sound so enticing!. I’m around Lia’s age and I also suffer from epilepsy. Luckily for me, I have it under control, and am able to lead a fairly normal life. In fact, not many people know I have it.
    Just from reading the comments above, I think one thing that I think this book exemplifies is that epilepsy is a truly confusing, chronic condition. It seems to take on different views from culture to culture. Throughout history and from culture to culture, epileptics have endured a range of different social status. Some cultures have considered epilepsy to be a ‘sacred disease’. Those that have it can become healers or in some cases gods. In other cultures, your social status is VERY low. You may live in poorer living conditions (in Christ’s time you would have lived in a cave away from the rest of civilization), have a low paying job, etc. It is also difficult to receive treatment. In Zambia rape rates among women with epilepsy were 20% compared to 3% of their counterparts.
    I think though this book shows cultural differences, it may also be a wake up call that really the world needs to educate itself better on health conditions. I know that some people may think that cultural beliefs validate, however at what cost? In Africa a lack of education about HIV has caused people to rape young virgins, because they believe that having sex with a virgin will ‘cure’ them. HIV is rampant there now. My Aunt is a politician and recently visited a village in Africa. This village had NO parents, the oldest person there was 14.
    Awareness is something our world needs to work on.

  40. I read this book last fall in a Medical Anthropology course. At one point, Dr. Ernst visited our class. He is very interesting to speak with. As of early November 2010, he believed Lia to still be alive. He says he is no longer in contact with the family, but that after the book was published the older children read the book to Nao Kao and Foua. The Lees understand that everyone while not understanding each other had Lia’s best interests at heart. Dr. Ernst also stated that until he read the book, he was not aware of many of the Hmong beliefs or of the misunderstandings that took place at the time.

    This is a very sad story, that fortunately many people have learned from the mistakes made and hopefully will prevent them from being repeated.

  41. Cienna–Thanks so much for sharing this information.–MS

  42. I just finished the book for my MSW class. I went looking for updates on Lia and found a 2010 interview with Anne Fadiman in which she said:

    “She’s still in a persistent vegetative state, and she’s still living at home … Lia’s now 27; she had her neurological crisis when she was 4. So the family has essentially confounded all the expectations of her doctors and American medicine.”

  43. Thank you for this space on the web. Finishing this book left me like others, scrambling to the web to find out what has happened since. I came upon …some interesting contributions to this discussion – http://kmareka.com/2009/12/09/lia-lee/
    In regard to epilepsy, it is a tough disease, and it can be in differing orders of magnitude. Lia’s case as stated was severe. As Dr. Kemalyn said “The outcome might have been better, worse, but would have been clearly different” if they had not sought western medical intervention. As a parent, we will do anything and everything to save our children, and Lia’s parents might have done that. The presence of a translator is obviously not enough when crossing cultures, hospitals need to go further and have culturally trained medical technologist who can translate and be the patients advocate, in the face of medical intervention.

    My 3 yr old son recently had acute appendicitis with minimal symptoms; being new to the area we live in (in the US), and not having a physician for my children yet, we were faced with a new hospital, and entering via the emergency room. It is very very tough not to freak out, and to relinquish control to a bunch of strangers. Unknown people are frenetically trying to figure out what is wrong with your child and have you sign countless forms so they can whisk your boy away to major surgery.

    It’s terrible what Lia and her family had to suffer thru. I thank Anne Fadiman for her dedication and compassion on gathering all the information of what transpired and crafting it into a book that has unquestionably changed the way many doctors and medical professionals are now trained. It should be a continuing education book for all medical professionals.

    Marcy, thank you for putting this together.

  44. I just finished the book and it was so touching..so amazing in so many ways. The book was recommended to me by a friend because my daughter (a ‘white girl’ as his family calls her) married a Hmong man about a year and a half ago. He was born in California and lives in a Hmong community there on his parent’s land. His parents came as teenagers to the US from a refugee camp in Thailand. I have been doing a lot of reading on the Hmong since Michelle’s marriage to try and understand..and the book really really strikes true. This has helped me so much! My daughter is immersed in a whole different world, and California is many many miles from Missouri where we live. In some ways it makes me even more sad because I see how hard it would be to ever expect her husband to bring her home to live..family is everything to the Hmong.

    Sounds like a tough situation for you. You want her near you now — wait until the grandchildren come along! I hope she comes to visit and you visit there as well. Best of luck, and thanks for commenting.–MS

  45. If anyone can help mee…I’m currently enrolled in a social work class and I just finished the book…I’m required to complete a cross-cultural family assessment and I have to draw a genogram that represents at least 3 generations of the Lee family…and i have to include at least three generational levels and the most significant relationships….can anyone help me with this?? I took notes throughout the book so it’d be easier for me to draw it…but its so clustered…if anyone is good with genograms i would appreciate any help !!

    Breanna–I’ll leave your comment up just in case, but I seriously doubt that my blog is the best place to find someone who can do this. Academic venues might work better. Good luck.–MS

    If anyone can help Breanna, email her at breezyb015@yahoo.com

  46. thank youu

  47. Michael,

    Like yourself I just finished this book for an MSW class. I must say I’m probably taking the same class and have the same professor you did. I like that you wanted to find the ending to the story. The book left me hanging. I did not find closure to the story. It is so tragic. I believe Lia was a gift in that she helped merge two cultures together. Her life was and is a blessing to so many people. I am glad that this story was shared. Social workers and medical professionals alike need to take cultural differences seriously when helping others.

  48. To Brad, the question isn’t whether the doctors were correct or not. They did what they felt was right, what they were trained to do. This was a prime example of the clash of cultures and therefore, belief systems. Whether one believes the doctors were “right” or the Lees were “wrong” does not matter. What matters is that we can empathize with people who are not part of the mainstream culture of the U.S. Anne Fadiman does a tremendous job giving us the background of the Lees and the disruption of their home country.

    This book is a fabulous and important book on history and culture that all health care professionals need to read.

    Well said, Lisa! I believe that’s exactly why Fadiman wrote the book — not to blame anyone, but to show the clash of cultures and its devastating effects. — MS

  49. Always in search of something to read on a long flight, I found this book in a resale shop. The four hour flight was not long enough. I have spent every free moment in the past two days reading this book. It was like reading a novel one could not put down. As a healthcare provider, I will read this book again for its educational content.

    Wondering about the status of the Lee Family led me to this blog. Thank you for the update and the opportunity to make a comment.

  50. I am writing with sad news. Lia Lee, the daughter of Hmong immigrants whose life story inspired the The Spirit Catches You and You Fall Down, died Friday, August 31st, 2012.

  51. Sad news indeed. Thank you, Jeff, for letting us know.

  52. I searched everywhere, but found nothing to say Lia Lee died. Jeffrey sent further explanation:

    I don’t have all the details surrounding her death. An official announcement was sent out from our school administrator this morning. Anne Fadiman is scheduled to speak at our college on Tuesday here in St. Louis, Mo. and had to adjust the speaking time to accommodate her travel out to California for the funeral service. I know it sounds like just gossip or rumor, but the source is reliable.

    If anyone knows anything, please comment

    MS

  53. The news is correct. I attend the same college as Jeff, and received the same e-mail. I will attend Anne Fadiman’s talk on Tuesday, and can give you an update if you would like.

  54. Today, I was looking online for information about Lia Lee. Sadly, I came across an article in the Sacramento Bee that said she died just a over a week ago–August 31, 2012. She was so very loved–her life and death are heartbreaking and tragic.

  55. A newspaper obit. That’s good enough for me, people, the news is confirmed. Lia Lee has died. It’s a miracle she lived as long as she did, without any further medical treatment, cared for by her mother at home. RIP Lia Lee, your life and death have created ripples in the current of information we all learn from in this tragically imperfect world of ours.

  56. Hello Marcy. Thank you for summarizing the beauty and rawness that Fadiman so effectively captured in this book. I just wish to clarify one comment that I found broad sweeping and inaccurate to the greater social work community. In your discussion of the book, you stated, “American social workers do not have a high level of tolerance for cultural difference…” In Lia’s story, perhaps that was true. However, as a social worker and admirer of many of my colleagues and mentors from the University of Michigan School of Social Work, I take issue with that statement. In fact, I argue that cultural sensitivity is at the core of a social worker’s ethos. It is arguably one of the most stressful, underpaid, and undervalued jobs. And, yet, it can be gratifying and that is why many social workers who devote themselves to assisting others would never complain. We, too, feel for Lia. Above else, we hope to reflect on what occurred and help prevent similar occurences going forward.

  57. Lia Lee should never have been forced to live in the USA and receive such misguided American medical treatment. It’s a travesty against shamanism and all Hmong traditions. Her parents were quite wrong in bringing her to any nonHmong healers. They left Laos to find a place to keep their traditions, but threw themselves into the foreign and modern, logical and scientific world of medicine pell-mell. Quite a mistake! Poor Lia! Shamans unite!

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