For several months I’ve listed Anne Fadiman’s book, The Spirit Catches You and You Fall Down, as my current read. While the story describes a struggle between a refugee Hmong family with a sick child and the medical world, the book, with its emphasis on cultural assumptions and misperceptions, is well worth the attention of adult children who help aging parents when they are in and out of hospitals.
I first read The Spirit Catches You more than six years ago, but I reread it, along with colleagues, this past summer. My earlier encounter came when Yale Medical School assigned it to students, including my daughter, in the entering class of 2009 — Fadiman says that it’s required reading at many med schools. When my daughter finished the book, she handed it to me. I was especially excited the second time around because I knew that I would have the opportunity to hear the author speak. She presented last week.
The Spirit Catches You and You Fall Down (I’ve read somewhere that words in the title are a translation for epilepsy in the Hmong language) describes an epic clash among the medical system, a hospital, a pre-literate, but very spiritual Hmong family, and Lia, a seriously ill child. And it is an epic — as I read, I hear an orchestra dramatically performing Mahler, Bruckner, or Wagner in the background. While no one in the story intended for things to go badly — everyone was dedicated to solving problems — the book highlights all of the issues that make it difficult for people, in this case non-English speaking refugees, to navigate the medical system. These include multiple medications, non-compliance, and brief (abrupt from the point of Lia’s parents) visits with medical personnel.
In her presentation Fadiman described how she came to write The Spirit Catches You and how it has changed her life. So much of the conflict, she explained, occurred because of the different ways people listened to one another — in this case the committed medical professionals and the little girl’s family. In her talk she pointed out how cross cultural issues make listening far more difficult. More importantly as she worked on the book and interacted with Lia’s family, she found that different translators translated the same thing differently — their concepts and values affected the conversation. In some situations the answers did not especially relate the the questions that were asked in the first place.
My favorite quote from her presentation:
What is more important, the life or the soul? Our job should be to create as many situations as possible to honor both the life and the soul. Situations are not black and white.