By Amurph11 | Books | January 17, 2011 |
By Amurph11 | Books | January 17, 2011 |
One of my best friends has the title of this book tattooed in his ankle - qaug dab peg, the Hmong word for epilepsy, which is translated literally: the spirit catches you and you fall down. He tattooed it on his ankle not because the book had that profound of an effect on him, but because he grew up in Thailand, and has epilepsy. I had seen Drew’s tattoo a million times, and I’m sure at one point or another he told me what it meant, but I didn’t put two and two together until I was about halfway through the book. I called him up feeling very proud of myself for finding a book that was so relevant to his life and experiences, but one which I felt sure he hadn’t yet read even though it was ten years old. This idea was quickly deflated when I showed it to him and he said, “Yeah, I have the name of it tattooed on my ankle.” Oops.
The Spirit Catches You and You Fall Down is primarily the story of the Lees, a family of Hmong refugees from the mountains of Laos. The Hmong, for those who don’t know, are an ethnic mountainous tribe from Southeastern Asia. As a people, they started out in China, but fled to Laos when the pressure to Sinocize became too great. During the Vietnam war, the Hmong fought for America against Pathet Lao, the Laotian Communist force, in what was known as “the Secret War.” Pathet Lao did eventually manage to overthrow the monarchy, and those Hmong who didn’t flee into Thailand were mostly killed with their families. From Thailand, the refugees scattered. Many went to America, some settled in the mountains of Thailand, some went elsewhere. The Lees immigrated to Merced, California, a city on the San Joaquin Valley that was most likely completely featureless until the Hmong influx (they now occupy somewhere around 12% of the county’s population).
The crux of the story is the Lees’ struggle with their favored daughter’s condition - Lia was diagnosed with a particularly severe case of epilepsy when she was still an infant. But most of this struggle centers around the contentious relationship between the Lees and the medical establishment. The Hmong in general, and the Lees in particular, believe that conditions like Lia’s are spiritual in nature. Specifically in the case of epilepsy, they believe that a particularly vengeful spirit called a dab catches the soul, causing the person in to fall down. Traditional cures include animal sacrifices, something that is not generally permitted in Western medical establishments. In the world of Western medicine, on the other hand, epilepsy is a notoriously difficult condition to medicate. Trial and error is generally the preferred method, usually with several types of anti-seizure medications. Normal people would have trouble following the intensely detailed instructions, much less people who couldn’t read them, and this was indeed the case with the Lees. There were no reliable translators in Merced at the time (unfortunately a very common occurrence), and even if there had been, the cultural barrier was even more insurmountable than the language barrier. It is unlikely any translator could have bridged the gap in understanding that led the Hmong to believe that it was the medicine that was making their daughter sicker. To make matters worse, the Hmong are a traditionally stubborn and anti-authority bunch, and the Lees did not take kindly to doctors trying to tell them how to take care of this daughter. Suffice it to say, the combination of circumstances does not bode well for Lia. The Lees continue to misunderstand or flatly ignore their doctors’ instructions, with fairly disastrous consequences.
And here we come to the part where Drew and my experience of reading the book veered wildly away from each other. As he found himself getting more and more frustrated with the family’s incapacity to follow the instructions that would save their daughter’s life, I felt myself becoming completely exasperated with the medical staff at Merced Community Medical Center. The reasons for this are pretty obvious. First and foremost, Drew actually has epilepsy, which surely makes the frustration of Lia’s rollercoaster decline much more intensely affecting than it already is. Secondly, he doesn’t have the good fortune to work in public health (although his mother does). I, on the other hand, am reminded daily of the plight of patients who don’t take their TB or HIV meds for social or cultural reasons. Because of this, and because I work for what I think is a pretty damn good international health organization, my opinion aligns pretty closely with the author’s: that it is the doctor’s responsibility to make him or herself heard and understood, not the patient’s responsibility to listen and understand. I’m of the perhaps more radical line of thinking that, in fact, a doctor should do whatever it takes to make sure this happens, whether that means finding cultural brokers as well as reliable translators, or allowing shamanistic ceremonies within hospitals.
It is this clash of ideas, though, that makes the book worth reading. Anne Fadiman is an incredibly gifted medical anthropologist, and indeed, this book succeeds in its greatest regard as a work of anthropology. She goes beyond just telling the story of the Lees’ and their surrounding community, but instead presents the entire history of the Hmong a an explanation, and a lead-up, to this particular cultural clash. This is the kind of book it takes a lifetime to write, which makes the specific subject and the depth of the research that illuminates it all the more impressive (especially because comprehensive histories of the Hmong are not easy to find). Aside from being a thorough and amazingly researched work, however, it also speaks to some sort of deeper collective unconscious for those of us that have ever suffered medical conditions. In Hmong culture, epilepsy is regarded as a sign of spiritual sensitivity - people who have it often become txiv neebs, or shamans. I can’t really speak to that, but I can tell you that suffering from a medical condition, especially one that is complicated to treat, taps into something primal in most people that medicine can’t always satisfactorily explain. I could tell you what a parasympathetic nerve is and why it made me topple over a lot in college, but in my head, my medical condition was and always will be the result of a battered and beat-up heart. Similarly, Drew could tell you every single neurological detail of his condition, but when it comes right down to it, the word he chose to have tattooed on his body is not epilepsy, not as such, but instead qaug dab peg - the spirit catches him, sometimes, and he falls down.
You can read more of Amurph11’s musings on her blog, Kings and Cabs.