Last night I went to hear a talk by author Anne Fadiman, sponsored by the Friends of the St. Paul Public Library and MELSA. In one hour, so much ground was covered, much of it profound, that I can not adequately capture it in one post.
Anne (I don’t think she’d mind my being on a first name basis with her) wrote the classic The Spirit Catches You and You Fall Down which was published in 1997 and reissused this year. Anne joked about the unwieldiness of the book’s title, that no one can keep it straight. She explained, though, that the words in the title mean “epilepsy” in the Hmong language.
The book (which I’m going to refer to as “The Spirit”) is about a first-generation Hmong family in Merced, California. In the 1980s, the youngest daughter of the family’s 14 children, Lia Lee, was diagnosed with severe epilepsy. The book describes “a case of cross cultural miscommunication in the medical system.” Basically, the American doctors and the family were at odds about how Lia’s condition should be handled and could not find a way to bridge the gulf. As Anne described it, although both the family and the doctors were well-intentioned, there was so much rigidity on both sides and a lack of support and systems to facilitate what anyone would consider an acceptable outcome.
In the end, Lia was removed from her family and put in foster care (with a non-Hmong family) so that she would be given the medication her doctors had prescribed. Being separated from her family was traumatic for Lia and she cried for periods of 24 hours. Although she was eventually reunited with her family, she never recovered and remains in a persistent vegetative state. She has far outlived the medical prognosis and is loved and cared for at home by her many sisters and mother (her father has passed away).
Anne told us that in Hmong culture, people with epilepsy are considered to have a special connection with the spirits and are therefore expected to become shamans, or healers. Lia unfortunately was not able to become a shaman. However, there has been much healing in our American medical system since the book about her was published fifteen years ago. The Spirit is required reading in many medical schools as well as schools of nursing and public health. Qualified interpreters are now required in health care settings. Cultural brokers such as community health workers are being used to help bridge cultural gaps within the medical system. There seems to be more interest in finding common ground between cultural groups, at least in some quarters.
Thank you, Anne Fadiman, for showing us Lia Lee’s spirit.
To be continued.