Arts, Culture & Media

Lia Lee: A Disabled Life that Changed the Face of Western Medicine

This year we mark the passing of a woman who altered western medicine, although she never knew it.

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(This story is based on a radio interview. Listen to the full interview.)

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.

Her story was immortalized in the 1997 book by author Anne Fadiman called, "The Spirit Catches You and You Fall Down."

THE SPIRIT CATCHES YOU AND YOU FALL DOWN (Chapter 1) Birth

If Lia Lee had been born in the highlands of northwest Laos, where her parents and twelve of her brothers and sisters were born, her mother would have squatted on the floor of the house that her father had built from ax-hewn planks thatched with bamboo and grass. 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. Even if Foua had been a less fastidious housekeeper, her newborn babies wouldn't have gotten dirty, since she never let them actually touch the floor. She remains proud to this day that she delivered each of them into her own hands, reaching between her legs to ease out the head and then letting the rest of the body slip out onto her bent forearms. No birth attendant was present, though if her throat became dry during labor, her husband, Nao Kao, was permitted to bring her a cup of hot water, as long as he averted his eyes from her body. Because Foua believed that moaning or screaming would thwart the birth, she labored in silence, with the exception of an occasional prayer to her ancestors. She was so quiet that although most of her babies were born at night, her older children slept undisturbed on a communal bamboo pallet a few feet away, and woke only when they heard the cry of their new brother or sister. After each birth, Nao Kao cut the umbilical cord with heated scissors and tied it with string. Then Foua washed the baby with water she had carried from the stream, usually in the early phases of labor, in a wooden and bamboo pack-barrel strapped to her back.

Foua conceived, carried, and bore all her children with ease, but had there been any problems, she would have had recourse to a variety of remedies that were commonly used by the Hmong, the hilltribe to which her family belonged. If a Hmong couple failed to produce children, they could call in a txiv neeb, a shaman who was believed to have the ability to enter a trance, summon a posse of helpful familiars, ride a winged horse over the twelve mountains between the earth and the sky, cross an ocean inhabited by dragons, and (starting with bribes of food and money and, if necessary, working up to a necromantic sword) negotiate for his patients' health with the spirits who lived in the realm of the unseen. A txiv neeb might be able to cure infertility by asking the couple to sacrifice a dog, a cat, a chicken, or a sheep. After the animal's throat was cut, the txiv neeb would string a rope bridge from the doorpost to the marriage bed, over which the soul of the couple's future baby, which had been detained by a malevolent spirit called a dab, could now freely travel to earth. One could also take certain precautions to avoid becoming infertile in the first place. For example, no Hmong woman of childbearing age would ever think of setting foot inside a cave, because a particularly unpleasant kind of dab sometimes lived there who liked to eat flesh and drink blood and could make his victim sterile by having sexual intercourse with her.

Once a Hmong woman became pregnant, she could ensure the health of her child by paying close attention to her food cravings. If she craved ginger and failed to eat it, her child would be born with an extra finger or toe. If she craved chicken flesh and did not eat it, her child would have a blemish near its ear. If she craved eggs and did not eat them, her child would have a lumpy head. When a Hmong woman felt the first pangs of labor, she would hurry home from the rice or opium fields, where she had continued to work throughout her pregnancy. It was important to reach her own house, or at least the house of one of her husband's cousins, because if she gave birth anywhere else a dab might injure her. A long or arduous labor could be eased by drinking the water in which a key had been boiled, in order to unlock the birth canal; by having her family array bowls of sacred water around the room and chant prayers over them; or, if the difficulty stemmed from having treated an elder member of the family with insufficient respect, by washing the offended relative's fingertips and apologizing like crazy until the relative finally said, "I forgive you." READ MORE>>

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