Lia Lee’s Story

There’s a riveting book I just read called The Spirit Catches You and You Fall Down that documents the story of a girl named Lia Lee.

Lia comes from a Hmong family that settled in California after immigrating to the US. At a young age she starts having seizures. Her parents take her into the emergency room, but because she is not having a seizure during the visit and her parents don’t have the English to explain what happened, it takes several visits before she is diagnosed with epilepsy. But even before she is diagnosed by the doctors, the Lees recognize the seizures as the condition where “a spirit catches you and makes you fall down.” In Hmong culture, it’s seen as a source of pride, and those who have epilepsy often grow up to be shamans.

The doctors who care for Lia aim for an agressive course of medicine, but there are issues that make it hard for Lia to get the doses the doctors prescribe. For one, the Lees don’t speak English, are illiterate, and there aren’t always Hmong-English translators on hand at the hospital. So the doctors have trouble communicating the complicated regimen of medicine that Lia needs to take. In addition, the Lees are wary of doctors and believe that the medicine they are prescribing might be making her sicker.

Despite everyone’s attempts to treat and care for Lia, she doesn’t fare well. Eventually Lia has a severe seizure that lasts for two hours. The doctors at her local hospital can’t stop it, and it she is transferred to another hospital with more advanced pediatric care. There, she goes into a coma and is unable to breath or eat on her own. Her doctors think that she will die and allow her parents to take her home. Amazingly, she lives, albeit with severe brain damage.  It turns out that this last seizure wasn’t caused by her epilepsy but by her body going into septic shock after contracting a serious infection. One of the doctors at the pediatric unit she is transferred to suggests that her immune system may have been weakened by the seizure medicine she was taking, which could have led to the infection. So in some ways, the Lee family may have been right, that the medicine was making Lia sicker.

As the story unfolds, the most glaring barriers that both the Lees and the doctors face are linguistic and cultural ones. One of the doctors, Neil, describes it like this,

It felt as if there were this layer of Saran Wrap or something between us, and they were on one side of it and we were on the other side of it. And we were reaching and reaching and we could kind of get into their area, but we couldn’t touch them (91)

Some of my Bhutanese Nepali friends from class

That image felt so real to me and reminded me of the refugee population that I know more about, the Bhutanese Refugees in Philadelphia. In college, I taught English as a Second Language in South Philadelphia and met many Nepali-speaking Bhutanese families who would come into class.

One of the most difficult things that accompanies moving to a new country is overcoming those cultural and linguistic barriers. With that comes trying to figure out the way that things work and learning how to navigate the bureaucratic systems. I remember one time an adult student came into class very upset. She was yelling and almost on the brink of tears. She was speaking in Nepali very quickly, so I had a lot of trouble understanding what she was saying, but I told her that I would help her out after class was over.

After class, I was beginning to get bits and pieces of her story, but I was still having trouble figuring out what was wrong. She invited me over to her apartment to talk to her husband who was able to speak some English. After talking with her husband, I finally understood they were talking about their water bill. They had recently moved to a new apartment but were being charged for both the water bill from the old apartment and for the water bill from the new one. This had been going on for several months.

It took me four separate calls to different departments in the water company to finally find a live person to talk to who was able to transfer me to somebody who could help with the problem. I told the representative what the issue was, and she promised to right the problem immediately. I felt so much for my friend and student who was overwhelmed by the bureaucratic mess. For heaven’s sake, bureaucracy is hard to deal with if you’re a native and speak the country’s language. Imagine trying to call up this organization without knowing how to navigate the system or having the needed language skills.

Although the story of Lia is a sad one, I smiled a lot while reading the book and loved all of the bits of information and anecdotes that Anne Fadiman collected. I learned so much about the Hmong that I never knew. Here’s one of my favorite tidbits from the book,

The Hmong have a phrase…which means ‘to speak of all kinds of things.’ It is often used at the beginning of an oral narrative as a way of reminding the listeners that the world is full of things that may not seem to be connected but actually are; that no event occurs in isolation; that you can miss a lot by sticking to the point (54)

It just loved this 🙂 There’s a lot about American culture that I like, but its obsession with “getting to the point” is not always one of them. In school we’re taught to stick to the point, write concisely, leave out unnecessary details. Which is important sometimes! But maybe there’s a place of balance that would allow for more exploration and wandering off the path.

I loved The Spirit Catches You and You Fall Down. It’s a captivating read that I’d recommend to everyone, especially those who work or interact with people from cultural or linguistic backgrounds different from their own.

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2 thoughts on “Lia Lee’s Story

  1. Excellent book. I remember reading this in two sitting… I just couldn’t put it down 🙂 I liked your juxtaposition between the book and your work with the Bhutanese. Are there many in Boston? We have a ton in Worcester…

    • I’m actually not sure if there are many in Boston, but there was a really big (and still growing) community in Philadelphia.

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