I have always felt that the action most worth watching is not at the center of things but where edges meet. I like shorelines, weather fronts, international borders. There are interesting frictions and incongruities in these places, and often, if you stand at the point of tangency, you can see both sides better than if you were in the middle of either one. This is especially true, I think, when the apposition is cultural. When I first came to Merced, I hoped that the culture of American medicine, about which I knew a little, and the culture of the Hmong, about which I knew nothing, would in some way illuminate each other if I could position myself between the two and manage not to get caught in the cross fire.
After I heard about the Lees’ daughter Lia, whose case had occasioned some of the worst strife the Merced hospital had ever seen, and after I got to know her family and her doctors, and after I realized how much I liked both sides and how hard it was to lay the blame at anyone’s door (though God knows, I tried), I stopped parsing the situation in such linear terms, which meant that without intending to, I had started to think a little less like an American and a little more like a Hmong.
By chance, during the years I worked on this book, my husband, my father, my daughter, and I all experienced serious illnesses, and, like the Lees, I found myself spending a lot of time in hospitals. I passed many hours in waiting rooms gnawing on the question, What is a good doctor? During the same period, my two children were born, and I found myself often asking a second question that is also germane to the Lees’ story: What is a good parent?
The Hmong have a phrase, hais cuaj txub kaum txub, 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; and that the storyteller is likely to be rather long-winded.
The history of the Hmong yields several lessons that anyone who deals with them might do well to remember. Among the most obvious of these are that the Hmong do not like to take orders; that they do not like to lose; that they would rather flee, fight, or die than surrender; that they are not intimidated by being outnumbered; that they are rarely persuaded that the customs of other cultures, even those more powerful than their own, are superior; and that they are capable of getting very angry. Whether you find these traits infuriating or admirable depends largely on whether or not you are trying to make a Hmong do something he or she would prefer not to do. Those who have tried to defeat, deceive, govern, regulate, constrain, assimilate, intimidate, or patronize the Hmong have, as a rule, disliked them intensely.
Although the inklings Dan had gathered of the transcendental Hmong worldview seemed to him to possess both power and beauty, his own view of medicine in general, and of epilepsy in particular, was, like that of his colleagues at MCMC, essentially rationalist. Hippocrates’ skeptical commentary on the nature of epilepsy, made around 400 B.C., pretty much sums up Dan’s own frame of reference: “It seems to me that the disease is no more divine than any other. It has a natural cause just as other diseases have. Men think it is divine merely because they don’t understand it. But if they called everything divine which they do not understand, why, there would be no end to divine things.”
Txiv neebs were polite and never needed to ask questions; doctors asked many rude and intimate questions about patients’ lives, right down to their sexual and excretory habits. Txiv neebs could render an immediate diagnosis; doctors often demanded samples of blood (or even urine or feces, which they liked to keep in little bottles), took X rays, and then, after all that, sometimes they were unable to identify the cause of the problem. Txiv neebs never undressed their patients; doctors asked patients to take off all their clothes, and sometimes dared to put their fingers inside women’s vaginas. Txiv neebs knew that to treat the body without treating the soul was an act of patent folly; doctors never even mentioned the soul.
The MCMC nursing staff came to know Lia well—better, in fact, than most of them would have wished. After she was old enough to walk, whenever she was well enough to get out of bed she ran up and down the corridor in the pediatric unit, banging on doors, barging into the rooms of other sick children, yanking open the drawers in the nursing station, snatching pencils and hospital forms and prescription pads and throwing them on the floor.
The idea that the drugs prescribed to cure, or at least attempt to treat, an illness are in fact causing it is not one that most doctors ever encounter. Doctors are used to hearing patients say that drugs make them feel bad, and indeed the unpleasant side effects of many medications are one of the main reasons that patients so often stop taking them. But most patients accept the doctor’s explanation of why they got sick in the first place, and even if they resist the recommended treatment, they at least believe their doctor has prescribed it in good faith and that it is not designed to hurt them. Doctors who deal with the Hmong cannot take this attitude for granted. What’s more, if they continue to press their patients to comply with a regimen that, from the Hmong vantage, is potentially harmful, they may find themselves, to their horror, running up against that stubborn strain in the Hmong character which for thousands of years has preferred death to surrender.
And the other thing that was different between them and me was that they seemed to accept things that to me were major catastrophes as part of the normal flow of life. For them, the crisis was the treatment, not the epilepsy. I felt a tremendous responsibility to stop the seizures and to make sure another one never happened again, and they felt more like these things happen, you know, not everything is in our control, and not everything is in your control.
A handful of times, Neil gave Foua a hug while Lia was seizing, but most of the time, while Lia was between the ages of eighteen months and three and a half years, he was too angry to feel much sympathy toward either of her parents. “The best thing I could have given Lia’s mother was compassion, and I wasn’t giving her any and I knew that I wasn’t giving her any,” he said. “There was just too much aggravation. It was like banging your head against a wall constantly and not making any headway. There was the frustration of the nighttime calls and the length of time it took and the amount of energy and sorrow and lack of control. […] When she came to the emergency room in status there would be sort of like a very precipitous peak of anger, but it was quickly followed by the fear of having to take care of a horribly sick child who it was very difficult to put an IV in.” Peggy added, “Some of the anger came from that. From our own fear.”
I hovered uncertainly, pages in hand, and realized that I was suspended in a large bowl of Fish Soup. Medicine was religion. Religion was society. Society was medicine. Even economics were mixed up in there somewhere (you had to have or borrow enough money to buy a pig, or even a cow, in case someone got sick and a sacrifice was required), and so was music (if you didn’t have a qeej player at your funeral, your soul wouldn’t be guided on its posthumous travels, and it couldn’t be reborn, and it might make your relatives sick). In fact, the Hmong view of health care seemed to me to be precisely the opposite of the prevailing American one, in which the practice of medicine has fissioned into smaller and smaller subspecialties, with less and less truck between bailiwicks. The Hmong carried holism to its ultima Thule. As my web of cross-references grew more and more thickly interlaced, I concluded that the Hmong preoccupation with medical issues was nothing less than a preoccupation with life. (And death. And life after death.)
Hmong patients might not understand the doctors’ diagnoses, but if they had summoned the courage to visit the clinic, they wanted to be told that something was wrong and to be given something, preferably a fast-acting antibiotic, to fix it. The doctors had a hard time meeting these expectations when the Hmong complained, as they frequently did, of vague, chronic pain.
Neil was pretty sure, however, that because Lia’s condition was progressive and unpredictable, he could treat it best by constantly fine-tuning her drug regimen. If he had chosen a single pretty-good anticonvulsant and stuck with it, he would have had to decide that Lia wasn’t going to get the same care he would have given the daughter of a middle-class American family who would have been willing and able to comply with a complex course of treatment. Which would have been more discriminatory, to deprive Lia of the optimal care that another child would have received, or to fail to tailor her treatment in such a way that her family would be most likely to comply with it?
A decade ago, that is not the way Neil looked at the situation. He never seriously considered lowering his standard of care. His job, as he saw it, was to practice good medicine; the Lees’ job was to comply.
Sukey’s business card read, in Hmong and Lao, “Fixer of Hearts.” She explained to me, “Psychological problems do not exist for the Hmong, because they do not distinguish between mental and physical illness. Everything is a spiritual problem. It’s not really possible to translate what I do into Hmong—a shaman is the closest person to a psychotherapist—but fixing hearts was the best metaphor I could find. […]” When I asked Sukey why the Hmong community accepted her so readily, she said, “The Hmong and I have a lot in common. I have an anarchist sub-personality. I don’t like coercion. I also believe that the long way around is often the shortest way from point A to point B. And I’m not very interested in what is generally called the truth. In my opinion, consensual reality is better than facts.”
While Foua was telling me about the dozens of tasks that constituted her “easy” work in Laos, I was thinking that when she said she was stupid, what she really meant was that none of her former skills were transferable to the United States—none, that is, except for being an excellent mother to her nine surviving children. It then occurred to me that this last skill had been officially contradicted by the American government, which had legally declared her a child abuser.
Their technology was cutting-edge and their clinical skills irreproachable. At first, however, they were too busy trying to save Lia’s life to focus on a great deal besides her pathology. [The doctor], for example, who worked on Lia for more than twelve hours straight, failed to notice her sex. “His metabolic acidosis was decreased after initial bolus of bicarbonate,” he wrote. “His peripheral perfusion improved and pulse oximetry started reading a value that correlated with saturation on the arterial blood samples.” Here was American medicine at its worst and its best: the patient was reduced from a girl to an analyzable collection of symptoms, and the physician, thereby able to husband his energies, succeeded in keeping her alive.
Calling Lia a vegetable was, it seemed to me, just one more form of avoidance. In describing what had happened to her, [Neil] and Peggy both used the kinds of terms favored by the doctors in MASH, gallows-humor slang wielded in times of extreme stress on the theory that if you laugh at something it can’t break your heart. “Lia gorked.” “She crumped.” “She fried her brain.” “She vegged out.” “She crapped out.” “She went to hell.” “No one’s at home, the lights are out.”
At this point, [Lia’s sister], who was three at the time, ran over to Lia and started banging her on the chest.
“Don’t do that, there’s a good boy,” said Martin, addressing the little girl in English, of which she did not speak a word. “[… P]lease tell them they have got to watch these other little children. Lia is not a doll.”
Once I asked Neil if he wished he had done anything differently. He answered as I expected, focusing not on his relationship with the Lees but on his choice of medication. “I wish we’d used Depakene sooner,” he said. “I wish I’d accepted that it would be easier for the family to comply with one medicine instead of three, even if three seemed medically optimal.”
Then I asked, “Do you wish you had never met Lia?”
“Oh, no, no, no!” His vehemence surprised me. “Once I might have said yes, but not in retrospect. Lia taught me that when there is a very dense cultural barrier, you do the best you can, and if something happens despite that, you have to be satisfied with little successes instead of total successes. You have to give up total control. That is very hard for me, but I do try. I think Lia made me into a less rigid person.”