Seventeen hospitalizations and three exorcisms,
What did Leah need?

Refugees and citizens, treatment and healing, at the border of life and death
Questioning the Possibility of Intercultural Encounters

Anne Fadiman is a brilliant storyteller.
At first, he shows a young girl with epilepsy in a hospital in California, her non-English speaking parents, and the American doctors trying to teach them how to give her medicine.
The film then moves on to the highlands of Laos, a refugee camp, and a Hmong community in California, explaining how the family came to America and why they refused to listen to their doctors.
At the same time, it expands the subject matter to include war, racism, intercultural conflict, and the problems of modern medicine and the other.
This book possesses all the virtues a good book should possess. Kim Hyun-kyung (anthropologist, author of People, Place, Hospitality)

Leah, a Hmong refugee child caught between the violent back-and-forth between the American medical system and Hmong healing magic.
How can refugees, stigmatized as "uncivilized" and deprived of language and representation, gain control over their own and their families' bodies? Through Leah, who suffers in intercultural encounters characterized by power asymmetries, the author appeals for the opening of a new world.
It's a "common world" where culture, identity, and disease aren't used as grounds for exclusion and hatred. Kim Hyun-mi (Professor of Cultural Anthropology, Yonsei University)

This book depicts the tragedy that arises when parents and doctors, unable to communicate due to the high cultural barrier between them, cherish a child in different ways. Kim Jun-hyeok (medical ethicist, author of "How to Become Healthy Again")

I've always thought that the most interesting things are not what happens at the center, but what happens at the edges where things meet something else.
So coastlines, weather fronts, and borders are good.
In places like this, interesting clashes and dissonances occur, and standing on the border often allows you to see both sides better than if you were in the center of either.
I think this is especially true when it comes to culture.

--- p.18

After hearing about the case of the Lees' daughter, Leah, and getting to know the family and doctors, which was the worst dispute in Merced Hospital history, I truly felt for both sides.
And I realized how difficult it is to hold someone accountable (God knows I tried to do that).
I learned that I shouldn't analyze situations too linearly.
In other words, I unknowingly stopped thinking a little less like an American and a little more like a Mong.

--- p.18

From Dan's perspective, there was no way for him to know that Pua and Nao Kao had already diagnosed his daughter's condition as 'being possessed by a spirit'.
From Pua and Nao Kao's perspective, there was no way of knowing that Dan had diagnosed Leah with epilepsy, one of the most common neurological disorders.
Although both sides had accurately identified the symptoms, Dan would have been shocked to hear that the cause was the loss of the soul.
Leah's parents would also have been shocked to hear that her seizures were caused by electrochemical impulses in her head caused by abnormal stimulation of brain cells.

--- p.61

Is it illegal in the United States to use a qi ning to cure illnesses? Why do American doctors drain so much blood from their patients? Why do they open dead people's heads and take out their brains? Do American doctors eat the livers, kidneys, and brains of Hmong patients? Is it true that in the United States, when Hmong people die, their bodies are cut up and sold in cans as food?
--- p.67

Western medicine was even more inadequate compared to the shamanistic healing experience they were familiar with.
Chi Neng would visit the homes of sick people and stay there for eight hours.
In contrast, Western doctors would make patients come to the hospital no matter how sick they were, and would only stay by their bedside for 20 minutes at most.
Chi Neng was polite and didn't ask any questions.
But the doctor asked all sorts of rude and intimate questions about the patient's life, even about his sexual and bowel habits.

--- p.67

“I just stared at them blankly.
I remember them having such a determined look on their faces.
It was like, 'We're doing what we think is right.'
The attitude was to tell me not to talk nonsense.
I felt like they really cared about Leah.
I felt like I was doing the best I could as a parent to take care of my child.
At least that's how I felt.
I don't remember being angry.
Rather, I felt a sense of awe at how different people’s ways of seeing the world could be.”
--- p.99

When Mong patients spoke, they would only say single syllables like 'yes' and look at the floor.
Soon they realized that a "yes" meant the patient was listening politely, but did not mean that he or she understood or agreed with what the doctor was saying.
A typical Mong characteristic is that they appear passive and docile in front of the doctor (in other words, by hiding their ignorance, they build up their own prestige, and by being polite, they build up the doctor's prestige), but as soon as they leave the hospital, they start to ignore everything.

--- p.122

“In short, the Mong people didn’t have the concepts that I had.
For example, you couldn't tell the Mong people that you had a problem with your pancreas and suffered from diabetes.
They don't have a word for pancreas.
There is no 'concept' of the pancreas itself.
Most of them have no concept that humans also have organs that are found in animals.
When a person dies, they are buried without being dissected.
In the case of the heart, they knew because they could feel the beating.
But other things, like organs like the lungs, were difficult concepts to understand.
“How can you intuitively know of the existence of lungs when you have never seen them?”
--- p.123

But Neil was convinced that it was best to continue to fine-tune the treatment, as Leah's condition was deteriorating and becoming less predictable.
If he had chosen one good anticonvulsant and prescribed it over and over again, he would have been treating Leah differently than he would have treated a middle-class American girl who was willing and able to follow a complex treatment regimen.
So which was more discriminatory? Denying Leah the best treatment available to other children, or failing to simplify treatment in a way Leah's family could easily follow?
--- p.137

The common perception of the Hmong refugees who came to America after the war was, as one newspaper reporter put it, that they had “migrated from the Stone Age to the Space Age.”
However, this view underestimates the complexity of Hmong traditional culture and ignores the tremendous social, cultural, and economic changes that many Hmong experienced during the war.
A way of life that had survived centuries of persecution in China and a mass migration to Laos in the 19th century was irreversibly transformed, at least in appearance, in just a few years.

--- p.227

Few things anger the Mong more than being criticized for being on welfare.
Above all, they felt they deserved the money.
Every Mong person has something to say about the word 'promise'.
It was a written or oral contract made by CIA agents during the Laotian Civil War, promising to help the Hmong, who would be disadvantaged if the People's Army won the war, if they fought for the Americans.
The Hmong expected to be treated as heroes if they fled their country and came to the United States, having risked their lives to save an American pilot who had crash-landed and having endured the devastation of their village by American bombing to help fight America's war.

--- p.330

We were not born into this world to live by receiving food from others.
It's so shameful to live like this, relying on others.
When I lived in my country, I never asked anyone for help like this.
[… … ] I tried very hard to learn English and at the same time, I looked for a job.
Any job, even cleaning the bathroom, was good.
But people don't believe me and don't give me work.

--- p.332

“We want to go back.
If I was born here, I could be here.
This is a really nice country, but we can't speak English here.
And I can't even drive.
You don't have to stay home alone.
When you go there, you can farm on a small piece of land, raise chickens, pigs, and cows, wake up early in the morning, harvest when the season comes, and live off what you have until the next harvest season.
That's enough.
How much peace of mind would that be?
Here, we do what we think is right, but those people say it's wrong.
If we do something we don't want to do, they say it's right.
So what should we do? We have no choice but to go back.”
--- p.336

Dan Murphy, who became director of the family medicine residency program at MCMC, once told me that if you fail to treat one Hmong patient, you fail to treat the entire Hmong community.
I thought that was right.
Who knows how many Hmong families have avoided hospitals because they didn't want their children to end up like Mr. Lee's little daughter? Everyone in the Lee and Yang households in Merced knew what happened to Leah (bad doctors, huh!), just as everyone in MCMC Pediatrics knew what happened to Leah (bad parents, huh!). Leah's case has solidified the worst stereotypes in the Hmong community about medical professionals, and in the medical community about Hmong people.

--- p.418

Was it an "unbridgeable" gap? I couldn't help but think back to when the Lees first encountered the MCMC medical team shortly after Leah's birth.
There was no interpreter at the time, and Leah's epilepsy was misdiagnosed as pneumonia.
What if, instead of becoming "veterinary doctors," the emergency room residents had sought to understand what the Mong believed, feared, and desired, and thus earned the Lees' trust from the start (or at least not violated it)?
--- p.427

Reading the hospital charts and trying to understand Leah and her family (I spent hundreds of hours just trying to understand the charts) was like deconstructing a lyric poem, reducing it to a series of syllogisms.
However, the residents and pediatricians who had been in charge of Leah since she was three months old had no guide to guide her through her world other than the 'chart'.
As each of them struggled to understand issues they could not express in their own language, the chart grew longer and longer, eventually reaching over 400,000 words.
Each of those words reflected the knowledge, training, and goodwill of those who recorded them, but none of them addressed the Lees' perspective on their daughter's illness.

--- p.427

“That’s tyranny.
What if a family refuses surgery because they believe the illness is caused by the soul? What if they believe their child will be eternally damned if they die during the operation? And what if they believe death itself isn't all that important? Which is more important: life or soul?
Bill said.
“There’s no need to go around talking.
Of course, life comes first.”
Then Suki said.
"no.
“I’m single.”
--- p.457

The whole family and over twenty relatives surrounded Leah.
All their attention was focused on the motionless Leah.
It was as if sunlight focused through a magnifying glass was about to burn the object.
Di Corda once said:
“Leah knows how to love and be loved.”
No matter what she had lost, Leah still knew how to be loved.

--- p.469

I have fought, and still fight, the assumption that my perspective is the only correct one.
I found this to be a trap where the conflicting polarities in this story were missing.
But this wasn't a trap I could avoid just by knowing what the core lesson of my book was.
[… … ] Empathy is so difficult that we always live our lives in a state of confusion.
Empathy is harder than anger, harder than compassion.

--- p.494