Lia Lee was born July 19, 1982, in Merced. Authorities took their daughter away from them for a year for not properly giving her prescriptions which came with dizzyingly complicated instructions. Language and cultural barriers fostered misunderstandings on both sides. Lia's family, like so many Hmong, fled Communist Laos after the Vietnam War. Lia Lee died in Sacramento on Aug. 31. (Her death was not widely reported outside California. ) But Lia's underlying medical issues were more complex still, for she had lived the last 26 of her 30 years in a persistent vegetative state. In September 1986, Lia fell off a swing at the Schelby Center, hit her head, and went into status epilepticus, in which her seizures continued one after another without stopping. Nobody knew whether she fell because she seized or she seized because she fell.
Lia, the subject of Anne Fadiman's 1997 book “The Spirit Catches You and You Fall Down, ” died Aug. 31 in Sacramento at the age of 30, after living decades longer than doctors said was possible. Lia's family, like so many Hmong, fled Communist Laos after the Vietnam War.
Lia was still having seizures when they arrived, and Dan correctly diagnosed her with epilepsy. The tests did not reveal the cause of Lia's epilepsy, although she was diagnosed with aspiration pneumonia, a side effect of the seizure. Her parents took turns staying with her at the hospital.
11 How did the Lees view Lia's epilepsy? They had no idea what was causing the seizures and were frightened of them. They were concerned for her health but also proud, as epileptics are often chosen to be shamans and can see things others cannot. They were extremely worried due to the seriousness of the disease.
"The spirit catches you and you fall down" is the literal translation of the Hmong name for epilepsy, qaug dab peg. The spirit referred to in the name is a soul-stealing dab; thus, the Hmong believe that epilepsy has a spiritual origin and should be treated accordingly.
In Fadiman's opinion, Lia's life was ruined not by septic shock or by noncompliant parents, but by cross-cultural misunderstanding. Her story is one of around a hundred that Fadiman heard about Hmong medical cases, and most turned out badly. Like others who had good relationships with the Hmong, she loved her clients.
What's Up With the Ending? The Spirit Catches You closes with a neeb ceremony—a Hmong religious ritual meant to bring Lia's soul back to her body after a big seizure leaves her officially brain-dead. As an outsider, author Anne Fadiman is our gateway into these proceedings.
MLA Citation Fadiman, Anne. The Spirit Catches You And You Fall Down: A Hmong Child, Her American Doctors, And The Collision Of Two Cultures. New York : Noonday Press, 1998. Print.
Fadiman discloses that Lia neither died nor recovered. As her siblings aged and assimilated into American culture, Lia remained nonresponsive, growing only several inches. But she died, so she couldn't do that, and I felt I had lost my American daughter. ”
During infancy, after a number of seizures and visits to the accident and emergency department at Merced's county hospital, Lia's American doctors eventually diagnosed her with epilepsy, for which they prescribed regular dose medicines for her treatment.
At its core, The Spirit Catches You and You Fall Down is all about the importance of family. Even as Lia's condition worsens, the family grows even tighter as a result, with her parents struggling
Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. Anyone can develop epilepsy. Epilepsy affects both males and females of all races, ethnic backgrounds and ages.