Lia Lee died on August 31, 2012 in Sacramento, California. She was 30 years old.

It is likely you have not heard of the Lee family. They arrived in the United States in 1980 from a refugee camp in Thailand with fewer possessions than they had children.

They endured the incomprehensible journey of many refugees: Forced out of their village in Laos; a month-long walking journey to nearby Thailand;a year in a refugee camp; finally settling into a small apartment in the city of Merced, California – a complete mismatch for a people who worked the land.

They would later say that all that was nothing compared to the nightmare that awaited them in the United States when they encountered the American health care system through one of their children, Lia Lee.

That story began in 1982, the year of Lia’s birth when, at three months old, she had her first seizure. With that seizure and a diagnosis of epilepsy a Grand Canyon sized cultural chasm formed between the medical system treating her and the family attempting to care for her. It was about perception and care; western biomedicine having a face-off with traditional beliefs that included herbs, teas, and animal sacrifice.

In this case there was no winner – everyone lost, especially Lia Lee. 

A book telling the story was published in 1997 and it, more than any other book, transformed the way we do care with patients whose beliefs differ dramatically from those of dominant American culture. The book is called The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, And the Collision of Two Cultures written by Anne Fadiman. Part anthropology, part history, and part biography, the book captures a troubling story and tells it well.

With Lia’s diagnosis of epilepsy (called “the spirit catches you and you fall down” or quag dab peg in Hmong) came medical treatment, medical testing, and worried parents. But at heart was a clear difference in cultural beliefs; beliefs that unwillingly became barriers to Lia’s care, not by design, but by a default system that dismissed the beliefs as irrational.

As the story unfolds, the reader feels a profound sense of sadness and anger. Both sides cared for the child (though arguably the parents had far more at stake); both sides wanted to see her get well; but there the similarities ended. The author relays the story with such compassion that neither side comes across as the ‘bad guy’; instead there is a longing to see them understand each other and come to a point of negotiation around Lia’s care.

But that never happens. 

Instead Lia has a grand mal seizure and there is nothing more the hospital can do for her. Brain dead with a raging fever the medical professionals send her home to die, but she doesn’t die. Treated with loving and sacrificial care at home, she lives, but in a vegetative state.

So now, over 25 years after she was supposed to die, Lia has died. How can I feel so sad over the death of someone I’ve never met? I think it’s because every time I read or recommend the book I realize anew that Lia’s life didn’t have to turn out this way. It’s one of the reasons why I feel so strongly about some of the work I do, and that is speaking and teaching on the importance of culturally responsive care.

So as I think of her death I am grateful to the author, Anne Fadiman for beautifully capturing a story that is so critical to understanding cultural collisions in health care. And I am profoundly grateful to the Lee family for their willingness to have their story told; a story that spread far wider and farther than I am sure they could imagine.

I am also grateful that this family I have never met taught me so much about life and the sanctity of life through their care of this child turned woman. Someone who, from the world’s perspective as one who could no longer function on her own, was of little use and value, yet to them infinitely precious.

So goodbye Lia. And thank you.

Related articles

• Lia Lee, 1982-2012: Life Went on Around Her, Redefining Care by Bridging a Divide (nytimes.com)