At 4, Lia had a grand-mal seizure, got an infection, and went into septic shock. She lost all higher brain function. She lived the rest of her life -- she died at age 30 -- unable to speak or move around or do much of anything, really.
When I read the notice of Lia's death in The Times, I thought to myself, "Wow, I have to read that book." The book is, in fact, truly brilliant. The author, Anne Fadiman, spent a huge amount of time getting to know the Lees and becoming their friend and also getting to know the doctors and reading Lia's vast transcribed medical history and so on.
The story is heartbreaking along several dimensions, the most obvious of which has to do with the early failed efforts to bring Lia's epilepsy under control. The doctors wrote out prescriptions and gave complex orders, inattentive to the fact that the cultural communication problems went way beyond the translation of words.
The drugs sometimes seemed to make Lia worse in the short run. The family not only couldn't read or use a thermometer or anything, they had no experience with Western style medicine at all. They had their own way of dealing with epilepsy -- the disease whose name in Hmong means something like "the spirit catches you and you fall down." In their minds, epilepsy was a mixed thing: bad, because dangerous, but also in some ways good, because you were in touch with the spiritual realm and could, yourself, become a healer. They didn't always give Lia the drugs.
The result: Lia often didn't get what the doctors were prescribing, and relations between the parents and the medical team predictably deteriorated. When you look at it from the Lee's point of view, it's terrifying the way the doctors have the power of the state behind them to force the family into doing whatever they said. At one point, even though Lia's parents are about the most loving and attentive parents you can possibly imagine, Lia was forcibly taken from their home and placed in foster care. On the other hand, when you look at it from the doctors' point of view, Lia deserved the best medical care possible; her parents wishes aren't the only thing that matters. It is a difficult situation.
|In later years, there was a rapprochement between Lia's mother Foua and her early doctors. Here is Foua together with Dr. Peggy Philp, at a panel discussion of Fadiman's book in 2002.|
Lia's parents -- and especially her mother -- never left her side. They fed her, and bathed her, and talked to her, and listened to her, and watched her, and soothed her skin, and moved her limbs. Most people in Lia's mental condition live 3 to 5 years. Lia lived for 26 years. When the doctors sent Lia home, they told the family that she'd be dead within the week. Boy did they prove that wrong.
The Times says of this, "The Spirit Catches You and You Fall Down is also the story of the immense benefits of tradition, which can furnish, Ms. Fadiman makes clear, a level of familial devotion less often seen among modern Americans."
Which really got me thinking about Lia's parents and their way of life, and especially about Lia's mom, who had virtually no outside life. In the book it's not presented as a sacrifice. According to Fadiman, in Hmong culture it's common to marry young and have lots of children, and life often revolves happily around their care.
And first I thought, "Wow, I am really immersed in the Modern/Western/Cosmopolitan/Whatever way of life." I mean, on some level I always know that I'm immersed in that way of life. But it's the kind of thing you don't always stop and think about.
Because I found the idea of living the way Lia's parents lived almost unbearable to contemplate. I mean, if you think of one day, it might seem nice: you wake up, you attend to the children, you play with Lia for a while, you feed everybody lunch, etc etc etc. and sometimes family and friends come by. But every day? No going out to the coffee shop, no cocktails, no going to work even? Wow.
And for all that Lia's familial care is a beautiful and moving thing, I think it's important not to lose sight of the fact that the things in our society that make it impossible, or at least extremely difficult, for most of us to imagine living this way -- those are great things in their own way, too.
For instance, I'm addicted to getting out and seeing the faces of people I don't know, to doing things that connect me to people beyond my family and friends, to being part of a large world. And I think of those as basically good qualities to have: they're part of feeling like a member of the human race, loving diversity and difference, and enjoying the fact that people live in all kinds of different ways.
I'm the first to admit that this way of life we have here -- it really does make us less able to care for the Lias of the world -- I mean, people like Lia as she was after her traumatic brain injury at age 4. If you're unwell, there really is no replacement for having someone who loves you tend to your needs 24 hours a day.
To me the moral of that story is just that you can't have all the good things in life all at the same time. Yes, complete immersion in family life and care for others can be wonderful. Yes, the world we live in makes this immersion almost impossible for many people. But that doesn't mean there's something bad about our way of life. It just means there can be wonderful things that do not all fit together.
There's a contingent out there, I think, that wants to deny this -- perhaps because it can seem like a dark, daunting, or depressing idea. That contingent tells us: you can have all the good things. It just takes compromise. A little work, a little taking care of Lia, you're good to go. Then the moral would be: we modern western cosmopolitans need to change, not be so extreme.
I have no doubt that compromise among good things can be a good way to live. But it doesn't remove the conceptual problem. The whole point about Lia's parents is that they weren't just there for her from 5 to 10 pm. They were there for her 24 hours a day. I live, to some extent, on the other extreme. Even making healthy dinners and brushing my own teeth feel like endless chores. Again? But I just made dinner yesterday!
If I'm right that the good things in life don't fit together, that compromise doesn't solve the conceptual problems, that shows that living in the extremes can all be good ways to live. It can be wonderful to be there for Lia for 26 years of breakfasts and bathing and the moving of the limbs. It can also be wonderful to be the cosmopolitan who needs the faces of strangers, a day of work outside the home every day, a fast internet connection, and cocktails promptly at seven.
Sure, if you live a monochromatic life, you're missing something. But my idea is that however you set it up, you're missing something. So if you want to live monochromatically, knock yourself out.