This year we mark the passing of a woman who altered western medicine, although she never knew it. Lia Lee was the profoundly disabled daughter of Hmong refugees living in California.
She died in August. Lia Lee suffered from epilepsy and had a catastrophic seizure at age 4. Her family, newcomers to America, believed her condition to be spiritual in origin and questioned the medical care she received.
Although she was in vegetative state, Lia was cared for in her home, by her family for 26 years. The floor was dirt, but it was clean. Her mother, Foua, sprinkled it regularly with water to keep the dust down and swept it every morning and evening with a broom she had made of grass and bark.
She used a bamboo dustpan, which she had also made herself, to collect the feces of the children who were too young to defecate outside, and emptied its contents in the forest.
I know this book all too well. Hutchison from this book became more important to us than I can put into words. Thanks for spreading the word. Maggie — I would love to hear more of this story. First of all — what a heartache you and your cousin must have gone through. Second — so glad you know the book and this particular doctor. As I said below — her life taught so many of us so much but at an unbelievable cost.
Thank you for reading. Marilyn, what a lovely, respectful, poignant tribute to Lia, her family, to Anne Fadiman for eloquently telling this important story and to the health care providers who had intended to help and heal. I share your plea for culturally responsive care. I echo your heartfelt thanks to Lia and to her family. Thought of you the whole time I was writing this Cathy. I well remember both of us reading it at the same time.
Thanks for working passionately every day in this area! You are commenting using your WordPress. You are commenting using your Google account. You are commenting using your Twitter account. You are commenting using your Facebook account. Notify me of new comments via email. Notify me of new posts via email. But that never happens. Epilepsy is recognized as a serious illness that can cause great suffering, but it is also seen as a distinguished affliction, since as in many cultures Hmong epileptics often grow up to become shamans.
Their seizures are viewed as an altered state, a potential point of entry into the spiritual realm to which the rest of us are denied access.
Q: Why were Lia's parents motivated to take her to the hospital in California for treatment but not willing or able to maintain her medications at home? They had had a good experience with Western medicine while in a Thai refugee camp. One of their children had died after their difficult flight on foot from Laos; they took two other ill children to the camp clinic, where antibiotics rapidly cured them.
They hoped for a similar result when Lia's symptoms of epilepsy began, and Lia's status epilepticus was usually resolved rapidly at the Merced hospital. Her parents found it difficult to grasp the idea of a chronic problem, though -- one that had to be continuously medicated but could not be cured.
They believed that if Lia's doctors were competent, they should be able to solve the problem as quickly and decisively as the antibiotics had solved the problem in Thailand. In addition, several factors made it harder for them to follow the doctors' instructions at home.
The medication regimen changed frequently, and because Foua and Nao Kao did not speak or read English they could not read the instructions. The pills were hard to administer and some of them had unpleasant side effects. And their feelings about Lia's illness were ambivalent because of the high status many epileptics enjoy in traditional Hmong culture. Although Foua and Nao Kao frustrated Lia's doctors by only sporadically following the medication regimen they had prescribed, within the sphere of their own culture they were wonderful parents.
They never let their children cry, loved them to distraction, carried them in homemade Hmong baby carriers when they were infants — in short, doted on them. The results of their fine parenting can be seen in Lia's siblings, who have grown into intelligent and well-adjusted adults. Four have attended college, quite a feat considering that Foua and Nao Kao are preliterate even in their own language. They are as excellent in the medical sphere as Lia's parents are in the parental sphere.
Neil and Peggy are warm, competent, highly skilled clinicians, both Phi Beta Kappa graduates of Berkeley who chose Merced because they wanted to serve the underserved.
If I lived there they would be my children's pediatricians. Communication between them and the Lees was defeated when the culture of medicine ran up against the culture of the Hmong: two very strong, stubborn, uncompromising cultures. The impasse had nothing to do with any professional or personal shortcomings on the part of these excellent doctors. Q: Were there issues beyond the language barrier that made it difficult for Lia's doctors to work with the Lees in caring for Lia? There was a profound cultural conflict engendered as much by the culture of medicine as by the culture of the Hmong.
0コメント