Spirit Catches You and You Fall Down

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.

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

A struggle that many refugees, and those of us who have lived in various places around the world, have is to find grocery stores where the produce or goods that can create the tastes we are familiar with are available? “No cilantro?” we wail at the confused store worker, who happens to be stacking cold storage cucumbers in neat little sterile, green rows.

Food and produce have a way of either making us feel at home, or alone and alien, as we frantically search for that ingredient or herb and vegetable that we desperately need.

Refugees in San Diego have come up with a solution called “New Roots”. New Roots is a community farming project that is described as a “United Nations of Produce”. 12 countries with 85 “farmers” are involved in this particular farm, an innovative project that builds on the historical legacy of immigrants creatively finding ways to belong and survive. New Roots provides classes on soil irrigation and climate to help women and men know what of their beloved past diets will grow best, and when things should be planted.

Besides fruits, vegetables, and herbs from all over the world, the farmers market where goods are sold is alive with the colors of the world worn by men and women from Somalia, Burundi, Mexico, and more.

In the 1970’s when the Hmong community began to arrive as refugees in cities across the United States “spread like a thin layer of butter throughout the country so they’d disappear.” (from The Spirit Catches You and You Fall Down) a Hmong advisor to the refugee program urged the government to give this agrarian people a bit of land, assuring them that within a couple of years, the Hmong would be self-sufficient. This, of course, was not taken seriously for many reasons – supposedly too expensive, would be unfair to others, impractical, and would set off “wild protests” from city and suburban-settled Americans, who, even if you gave them a small plot of land, wouldn’t necessarily want it. Interesting that many Hmong communities have experienced greater than 25 plus years of welfare dependency. To transplant an agrarian group to the inner city is neither wise, nor kind. This new idea of community farms that are “dedicated to refugee agriculture” is innovative and becoming wildly successful in various cities across the country.

As I read about these farms, and the sense of belonging that refugees are gaining, simply from working the earth, providing tomatoes for their families and communities that taste like tomatoes, I am reminded of the story of The Secret Garden. Mary, contrary as can be, has been transplanted from the warmth of India after the death of her parents from cholera. There, in the Welsh country side, she has one request of her distant, reclusive uncle “Please Sir, Can I have a bit of earth?” And with a bit of earth, her whole world changes.

Have you moved a lot and struggled to belong? What did it take for you to feel a sense of belonging and home? For some people it’s a “bit of earth” and for others it can be a vocation. Readers, weigh in!

Take a look at this slide presentation from the NY Times! It will give you some great pictures of the New Roots farm stand in the City Heights neighborhood in San Diego.

http://www.nytimes.com/slideshow/2011/10/09/us/20111010-REFUGEE-3.html