“I have come to believe that her life was ruined not by septic shock or noncompliant parents but by cross-cultural misunderstanding.” page 262
The Spirit Catches You and You Fall Down by Anne Fadiman.
Farrar, Straus, and Giroux, New York, my edition 1998 (first published 1997).
Nonfiction, 341 pages +reader’s guide.
This is the story of a severely epileptic Hmong girl and the family and doctors who wanted what was best for her but disagreed about what that was. It’s also the story of the Hmong people in America, and their experiences with the medical establishment.
This is technically a re-read. However, I didn’t remember much, so it was like reading a new book. The primary story in this book is Lia’s life and the friction between her family and the medical staff caring for her, but it has a wide scope.
The Atlantic also has an interesting article about Hmong in Wausau (an area of central Wisconsin). The court case described is definitely worth reading about. The article also mentions this song as a source of inspiration:
This last one is a bit of a spoiler, so you may want to stop now if you haven’t read the book yet…
Lia lived for an extraordinary 26 years in a persistent vegetative state due to the loving attention of her family. This article reviews the book and includes information on her 2012 death.