The Spirit Catches You and You Fall Down (5 page)

Between the ages of eight months and four and a half years, Lia Lee was admitted to MCMC seventeen times and made more than a hundred outpatient visits to the emergency room and to the pediatric clinic at the Family Practice Center. “Hmong
,” read the admission notes. Then, “Hmong
well known to this facility.” Then, “Hmong
very well known to this facility.” Sometimes instead of “Hmong” the notes say “H’mond” or “Mong” or, in one note transcribed from a tape dictated by a resident, “Mongoloid”—an attempt by a tired typist to make sense of a strange syllable not to be found in any medical dictionary. Under “How Arrived,” the notes always say “Via mo’s arms” under “Initial Diagnostic Impression,” always “seizure disorder of unknown etiology,” and sometimes fever and pneumonia and infections of the middle ear; under “Insurance Coverage,” always Medi-Cal; under amount paid by patient, always zero. Almost all the admission notes contain the phrase “language barrier.” On one assessment form, a nurse’s aide with a Hispanic surname has written, “unable to obtain parient speak no english.” On another form, in the space marked “Communication Problems,” another nurse has summed up the situation with a single word: “Hmong.”

Foua and Nao Kao always knew exactly when a seizure was coming, because Lia knew. The aura, a sense of premonition common to epileptics and sufferers of migraine and angina, can take many forms, from mildly peculiar sensations—sudden tastes or smells, tingling, flushing,
déjà vu, jamais vu
(the feeling that an experience is utterly unfamiliar)—to mortal terror. Physicians in the eighteenth century called the frightening auras
angor animi
, “soul anguish,” a concept any Hmong might recognize. Before Lia fell, she would run to her parents to be hugged. She also demanded plenty of hugs from them when she was feeling fine, but they recognized these occasions as different because she had a strange, scared expression, and they would gently pick her up and lay her on the mattress they kept for this purpose on the floor of their living room (which was otherwise unfurnished). Sometimes there was twitching on one side of her body, usually the right. Sometimes she had staring spells. Sometimes she seemed to hallucinate, rapidly scanning the air and reaching for invisible objects. As Lia got older, the abnormal electrical activity spread to larger and larger areas of her brain and triggered more frequent grand mal episodes. As she lay face up, her back would arch so violently that only her heels and the back of her head would touch the mattress, and then, after a minute or so of rigid muscle contractions, her arms and legs would start to thrash. During the first phase, her respiratory muscles contracted along with the rest of her body, and she would often stop breathing. Her lips and nail beds turned blue. Sometimes she gave high-pitched gasps, foamed at the mouth, vomited, urinated, or defecated. Sometimes she had several seizures in a row; between them, she would tense, point her toes, and cry a strange deep cry.

In the most serious episodes, Lia would continue seizing and seizing without regaining consciousness. This condition, called “status epilepticus” when it lasts for twenty minutes or longer, is what the doctors in the MCMC emergency room feared most. Lia usually remained in “status” until massive doses of anticonvulsant medication could be administered intravenously. Inserting a needle into the vein of a baby who is having convulsions is like shooting, or trying to shoot, a very small moving target. While the hapless young resident who happened to be on call maneuvered the needle, he or she was always acutely aware that as each second ticked away during the phases of respiratory arrest, Lia’s brain was being deprived of oxygen. When I asked one nurse whether this caused brain damage, he said, “If you want to know what a five-minute seizure is like, go stick your head in a bucket of water for five minutes and take some deep breaths.” Over the course of several years, Lia was treated at least once, and sometimes many times, by each of MCMC’s residents. Frightening as it was to be on duty when Lia was brought in at 3:00 a.m., there was probably no other group of family practice residents in the United States who by the end of their three-year program were so familiar with the management of pediatric grand mal seizures.

The residents were merely the first line of defense. Every time Lia came to the emergency room, either Neil Ernst or Peggy Philp, the two supervising pediatricians who served on the faculty of the family practice residency program, was paged and, no matter how late it was, drove to the hospital (a trip that could be accomplished, at just under the speed limit, in seven minutes). Peggy Philp was the physician Dan Murphy consulted during Lia’s first admission to MCMC. The note she wrote six days after Lia’s discharge read, in part:

Looking back on this optimistic document several years later, Peggy explained, “Most epileptics are controlled relatively easily by seizure medications. Lia’s disorder turned out to be much more severe than what you usually see in classic epilepsy.” Lia’s chart eventually grew to five volumes, longer than the chart of any other child who has ever been admitted to MCMC, and weighed thirteen pounds eleven ounces, considerably more than Lia weighed when she was born there. Neil and Peggy once went through a photocopy of it with me. Over a period of several evenings, the two doctors worked with the same briskness and efficiency they would have brought to a patient’s diagnostic examination, arranging the thousands of pages in neat stacks, rapidly discarding any they deemed irrelevant, never skipping over—in fact, often specifically pointing out—details that failed to put them in the best possible light, and stopping every once in a while to laugh ruefully at the chart’s many errors. (The errors were invariably made by transcribers, nurses, or other physicians; their own contributions were flawless and usually even legible.) “‘She was seen to have lice coming out of her nose.’ Lice. That can’t be right. Ice? Mice? Rice! Shoot, that’s what it is, rice!” Sometimes Neil would stop and stare at a page, often one that seemed anesthetically dull to me, and shake his head and sigh and say, “Oh God, Lia.” When we looked through the records of Lia’s first visits to the emergency room, he started to flip the pages back and forth with angry little slapping motions. He had forgotten that she had had epileptic seizures for five months before they were diagnosed and medicated, and was wondering in retrospect whether the course of her life might have been different if his hospital had offered her optimal medical care from the beginning.

Neil Ernst and Peggy Philp are married to each other. They alternate call nights, and each prayed that when a Lia Lee call came, it would be the other one’s turn to roll out of bed. Neil and Peggy are both the children of physicians, both high school valedictorians, both Phi Beta Kappa graduates of Berkeley. They met when they were nineteen and eighteen, two tall, good-looking, athletic premed students who recognized in each other the combination of idealism and workaholism that had simultaneously contributed to their successes and set them apart from most of their peers. By the time their lives intersected with Lia’s, they shared a practice and a half, as well as an office, a beeper, and a byline on the articles they had published in medical journals. Neil’s curriculum vitae, which was flush with academic and professional honors, was the only one I have ever seen that noted Marital Status and Children first. Their schedules were arranged in such a way that one of them was always home in the afternoon when their two sons got out of school. Every morning, the alarm buzzed at 5:45. If it was Monday, Wednesday, or Friday, Neil got up and ran eight miles. If it was Tuesday, Thursday, or Sunday, Peggy got up and ran eight miles. They alternated Saturdays. Their runs were the only time either of them was entirely alone for more than a few minutes, and they never skipped or traded a morning, even if they had been up most of the night on call at MCMC. “I am a fairly driven and compulsive kind of person,” Neil told me one night in the living room of their extremely neat ranch-style house, the care of which was evenly split between them. Peggy was on call at the hospital. “Peggy is very similar to me. We get along real well.
Real, real
well. Medically, we complement each other. My strengths are infections, asthma, and allergies. Peggy is strong in hematology and she’s better than I am in child development. When you’re confronted with a difficult decision, it’s nice to talk to someone whose judgment you respect. Am I thinking okay? Would you offer anything else? Can I do anything else? If I feel like a dumbshit I can be a dumbshit with her. We don’t have to impress each other. If she was not in my life it would…well, take a while for me to be able to function.”

I once asked Teresa Callahan and Benny Douglas—a pair of married family physicians who trained as residents under Neil Ernst and Peggy Philp and who, like their mentors, now share a practice—what they thought of them. Teresa said, “It’s hard to perceive them separately.” Benny said, “I mean, like, Neil apostrophe n apostrophe Peggy is the way we think of them. Neil ’n’ Peggy know everything and they never make mistakes. They are perfect. If we ever had problems all we had to do was call Neil ’n’ Peggy and they would figure it out.” Teresa said, “Neil ’n’ Peggy are controlled, Neil especially, almost to a fault. I have even heard him say, about getting angry or crying, that he just doesn’t feel comfortable doing things like that. But that doesn’t mean he isn’t compassionate. He prides himself on establishing a good rapport with his clinic patients, including some very difficult ones, some Spanish speaking, and most patients accept what he and Peggy say as gospel and do whatever they say. Few other people I know would have gone to the lengths they did to provide good medical care to Lia. They were always thinking about her. Whenever they had to go away, they’d tell all the residents, ‘Now if this little fat Hmong girl comes in seizing….’”

Lia was indeed fat. Her Physical Growth chart shows that although her height usually hovered around the fifth percentile for her age (not unusual for a Hmong child), her weight climbed as high as the seventy-fifth percentile. Her thick subcutaneous padding compounded the challenges that awaited the doctors in the emergency room. Neil Ernst wrote in a pediatric clinic note that in addition to her seizure disorder, “Lia’s other problem, which is of considerable concern, is the fact that she is quite overweight, which makes intravenous access during the time of seizures quite difficult. Considerable effort has gone into weight control in this child. The father apparently likes Lia the way she is and is somewhat resistant to this problem.” (In Laos, where food was often scarce, a plump Hmong child was perceived as healthy and especially well cared for.)