Life Went on Around Her, Redefining Care by Bridging a Divide – NYTimes.com
In 1988, when Anne Fadiman met Lia Lee, then 5, for the first time, she wrote down her impressions in four spare lines that now read like found poetry:
barefoot mother gently rocking silent child
diaper, sweater, strings around wrist
like a baby, but she’s so big
mother kisses and strokes her
The story of Lia, the severely brain-damaged daughter of Hmong refugees who had resettled in California, became the subject of Ms. Fadiman’s first book, “The Spirit Catches You and You Fall Down,” published in 1997.
Its title is the English translation of the condition known as qaug dab peg (pronounced “kow da pay”), the Hmong term for epilepsy, from which Lia had suffered since infancy.
In traditional Hmong belief, qaug dab peg, like many illnesses, is spiritual in origin, caused when the soul becomes separated from the body. A traditional cure might entail visits from a shaman, who would attempt to reunite body and soul.