This spring I read The Spirit Catches You and You Fall Down by Anne Fadiman.

Tuesday, June 05, 2001

This spring I read The Spirit Catches You and You Fall Down by Anne Fadiman. It’s a book about the Hmong and their struggles with the American medical establishment. Everybody loved the girl named Lia Lee and wanted to help her get better, but because of communication problems, conflict between cultures, different ideas about using medicine to treat disease, and just plain bad luck she will never grow up. Lia suffered from a very severe case of epilepsy, which the Hmong call the time when &uot;the spirit catches you and you fall down.&uot; She finally suffered a massive seizure which destroyed most of her brain and left her a complete &uot;vegetable&uot; who eats and breathes, but does little else.

A lot of people, both Hmong and American, continue to ask themselves what they could have done differently. They go over their decisions, looking for clues they should have seen, mistakes they made, information they misinterpreted. Ms. Fadiman stills pulls out the tape recordings she made, listening to the musical voices of Lia’s parents and the clear, even voices of the doctors and nurses. But Ms. Fadiman makes clear that even with 20/20 hindsight, an easy solution to the medical crisis Lia was undergoing is not apparent. All we are left with is a bunch of &uot;what ifs&uot; and &uot;might have beens.&uot;

Conflicts between doctors and patients who come from cultures outside the mainstream are not unknown and took place even before the Hmong came here from Laos starting in the 1970s. But the Hmong were different. Because of their culture and history, they arrived resistant to assimilation and with an intact sense of who they were. The Hmong are not opposed to modern medical care, but they place limits on its effectiveness. For them, there is no clear distinction between the physical and spiritual basis for disease. Cancer can be treated in hospitals, but according to Hmong tradition doctors only heal part of the illness. The rest of the problem concerns the soul of the patient and can only be treated through prayer, sacrifice and the intervention of spirits.

As I read the book, I found myself thinking about my own beliefs about medicine, disease and health. How far outside the &uot;mainstream&uot; am I when it comes to acceptance of modern medical procedures, technologies and attitudes? As a Christian, I believe in prayer, even if real miracles are rare. But the efficacy of prayer is hard to document in a research lab. Am I, like the Hmong, willing to turn to the &uot;spirit world&uot; when I pray for healing? Will it look like I’m doing that if I talk to my doctor about it? Medical decisions about the care of children, both born and unborn, make things even more complicated. With the human genome mapped out, how long before doctors begin using that knowledge to deal with illnesses like sickle-cell anemia or down syndrome? Will refusing to submit to DNA therapy for a fetus be seen as non-compliant? As outside the mainstream?

What I also noticed as I read the book was the resistance to alternative perspectives on healing and disease among medical professionals. &uot;It’s our way or no way,&uot; is part of Lia’s story. It’s one I’ve seen in my own life, too. Don’t get me wrong, I’ve observed a commitment to healing in the doctors I’ve met. But I also don’t see why I should turn into a passive pile of flesh in their presence. Medical care should be holistic, looking at the patient’s body, beliefs and lifestyle, the way that the Hmong do. People need to be treated as more than just a disease or condition. We need to be treated with respect and given the information we need to make informed choices about our medical care.

Doctors need to be partners in the medical care of children, and resist the impulse to take over when it comes to decisions about treatments or therapies. Parents need to listen carefully and learn to ask questions when we don’t understand, because sometimes we are making choices that lead to life or death for our children. And if we choose options that seem the least effective from the doctor’s perspective we need to understand that, but our decision also needs to be respected as the one that is right for our family. Having a difference of opinion about medical treatment does not make parents or doctors monsters.

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David Behling is a rural Albert Lea resident. His column appears Tuesdays.