Lia Lee was three months old when the first seizure hit. It wasn't a quiet thing. Her older sister slammed a door, and Lia’s body just... revolted. Her eyes rolled back. Her arms jerked. To her parents, Foua Yang and Nao Kao Lee, this wasn't just a neurological glitch. It was qaug dab peg. That roughly translates to "the spirit catches you and you fall down." In the Hmong culture of Laos, this wasn't necessarily a curse; it was a sign of spiritual distinction, even though it was terrifying to witness.
But to the doctors at Merced Community Medical Center in California, it was epilepsy. Plain and simple.
That fundamental gap in understanding—the distance between a "spiritual gift" and a "life-threatening seizure disorder"—is why Anne Fadiman’s 1997 book remains required reading in almost every medical school in America. If you’ve ever wondered why your doctor asks about your "cultural beliefs" during a checkup, you can thank Lia Lee. Her story changed everything. Or at least, it was supposed to.
The Collision in Merced
The tragedy of The Spirit Catches You and You Fall Down isn't that there were villains. There weren't. Honestly, that’s the hardest part to swallow. You had the Lee family, who loved Lia with a fierce, sacrificial intensity that intimidated her doctors. Then you had Dr. Neil Ernst and Dr. Peggy Philp, pediatricians who were genuinely brilliant and deeply committed to saving Lia’s life.
Everyone wanted Lia to be okay. But they were speaking two different languages, and I don't mean Hmong and English. They were operating in different realities.
The doctors saw a biological machine that needed calibration through complex medication regimens. The Lees saw a soul in danger that needed to be retrieved by a shaman. When Lia’s parents didn't give her the anticonvulsants—partly because the side effects made her lethargic and partly because they believed the medicine was actually making her sicker—the medical establishment saw "non-compliance." They saw parents who were endangering their child.
It got so bad that the state eventually took Lia away. They put her in foster care for a year. Imagine that. You’re a refugee who fled a war-torn country, you finally get to the "land of the free," and the government takes your baby because you don't understand how to administer a dozen different liquid medications that you believe are harming her spirit.
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What the Doctors Missed
Western medicine is great at fixing broken parts. We're amazing at it. If you have an infection, we have antibiotics. If you have a tumor, we have a scalpel. But Fadiman’s account exposes a massive blind spot: the "biomedical" model often ignores the person inhabiting the body.
Dr. Arthur Kleinman, a renowned psychiatrist and cross-cultural researcher at Harvard, plays a big role in the book’s intellectual backbone. He proposed a set of questions that every doctor should ask, which basically boils down to: "What do you think caused this? Why do you think it started when it did? What are you afraid of?"
If Lia’s doctors had truly used that framework, things might have been different. Instead of a war of wills over Phenobarbital dosages, there could have been a middle ground. Maybe the doctors could have invited a txiv neeb (shaman) into the hospital. That sounds "woo-woo" to some people, sure. But in the Hmong community, the txiv neeb is the one who treats the soul. Western medicine treats the body. If you don't treat both, the Hmong believe the patient won't get well.
The Big One: The "Lost" Soul
In 1986, the big one happened. Lia had a massive seizure, what doctors call status epilepticus. She was four years old. By the time the doctors got the seizing to stop, her brain was essentially gone. She was in a persistent vegetative state.
The doctors predicted she’d die within months. They told the family to prepare for the end.
She lived for 26 more years.
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Lia Lee didn't die until 2012. Her family took her home and cared for her with a level of devotion that stunned the medical community. They bathed her, dressed her in beautiful clothes, and held her every single day. They believed that while the doctors had "broken" her body with too much medicine, her soul was still there, and it was their job to love it.
This is where the book gets really uncomfortable for people who like clear-cut answers. Was Lia’s survival a miracle of Hmong nursing? Or was it just the random resilience of a young body? It doesn't really matter. What matters is that the medical "experts" were wrong about her lifespan, and her "uneducated" parents were right about her tenacity.
Why This Still Matters in 2026
You might think we’ve solved this. We have "cultural competency" training now, right? Every hospital has a diversity officer. But the reality is that the power dynamic hasn't shifted as much as we’d like to think.
We still see these clashes today, though they look different:
- A parent who refuses a vaccine because of deep-seated mistrust of government institutions.
- A patient who prefers herbal supplements over a statin because their grandmother lived to 100 on the same regimen.
- The "difficult" patient who won't follow a diet because food is the only connection they have left to their heritage.
The lesson of The Spirit Catches You isn't "Western medicine is bad." Not at all. Lia needed those meds to stop the seizures. The lesson is that medicine is a social act. It’s a relationship. When doctors ignore the patient's story, they lose the patient's trust. And when trust is gone, the best medicine in the world is just liquid in a bottle that stays on the shelf.
The Cultural Humility Shift
After Fadiman’s book became a bestseller, the term "cultural competency" became a buzzword. But many experts now prefer the term cultural humility. Competency implies you can "master" a culture—like you can read a book on the Hmong and suddenly you're an expert on their lives. Humility is different. Humility is admitting you don't know. It’s walking into a room and saying, "I know a lot about epilepsy, but I don't know anything about your daughter. Tell me about her."
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It’s about recognizing that the doctor isn't the only authority in the room. The parent is an authority on the child. The patient is an authority on their own pain.
Real-World Impact: How Things Changed in Merced
The real tragedy of Lia’s story sparked some actual change in the city where it happened. After the book came out, the hospital in Merced started doing things differently. They actually started allowing shamans to visit patients. They recognized that for the Hmong, a ritual involving a sacrificed pig (done outside the hospital, of course) might be just as important to the family’s peace of mind as an IV drip.
It’s about integration. It’s about realizing that you can’t heal a body in a vacuum.
Actionable Takeaways for Patients and Providers
If you’re a patient or a caregiver, especially if you come from a background that feels "at odds" with the standard medical system, there are ways to bridge the gap before a crisis happens.
- Be vocal about your "Why": If you're hesitant about a treatment, don't just say no. Explain the belief or the fear behind it. "I’m worried this medicine will change his personality" is something a doctor can actually work with.
- Bring an advocate: This isn't just about language translation. It’s about having someone who understands your values and can "translate" them into medical-speak.
- Request a consultation with a cultural liaison: Most major hospitals now have people whose entire job is to navigate these specific waters. Use them.
For healthcare providers, the "Kleinman Questions" are still the gold standard. If you find yourself frustrated with a "non-compliant" patient, stop.
- What do you call the problem?
- What do you think the sickness does?
- How severe is it? Will it have a short or long course?
- What kind of treatment do you think the patient should receive?
- What are the chief problems the sickness has caused?
- What do you fear most about the sickness?
The Legacy of Lia Lee
Lia Lee’s life was short in the ways that "count" to some—she never spoke, never walked after that final seizure—but her impact was massive. She is the reason thousands of medical students now have to think about the "spirit" as much as the "synapse."
She taught us that when you strip away the charts, the monitors, and the medication schedules, medicine is just two people trying to understand each other in the dark. Sometimes they fail. But the hope is that by reading her story, the next time the spirit catches someone, there will be a hand there to catch them—one that knows how to hold both the medicine and the soul.
Next Steps for Deeper Understanding:
- Read the Source: If you haven't read Anne Fadiman’s The Spirit Catches You and You Fall Down, get the 15th-anniversary edition. It includes an afterword about Lia’s life and the changes in Merced that happened after the initial publication.
- Research the "Small War": Look into the history of the Hmong in Laos and their alliance with the CIA. It explains the deep trauma and mistrust many Hmong refugees felt when they arrived in the U.S.
- Practice Cultural Humility: Next time you’re in a medical setting, ask yourself: "What are the unspoken beliefs in this room?" Awareness is the first step toward avoiding another collision.