"Neil and Peggy were excellent physicians, but... imperfect healers." In those very few words near the end of her fine, textured study of an immigrant family's struggle with American doctoring, Anne Fadiman articulates the single most fundamental source of contention between today's medical establishment and those who entrust themselves to its care. In the minds of many of its most fairminded and supportive critics, the greatest challenge faced by Western medicine as it evaluates itself in the fading days of the twentieth century is not one that can be overcome in laboratories of immunology, genetics, or microbiology, or in the thinktanks of health care planners. It must be met at the bedsides of the sick.
The challenge is an old one, but the profession has never universally acknowledged its gravity in the modern era, nor has confronting it been treated as a worthy endeavor by those responsible for training young physicians, except perhaps in lip service. Simply stated, the challenge is to respond to a reality whose enormous consequences are too often underestimated or ignored: patients bring to doctors not only their diseases, but also their entire lives, including the cultures and the worldviews of their families' history. American clinical teachers are fond of enjoining their students never to forget that diseases occur in sick people and not only in sick organs--and then they ignore their own injunctions by going ahead and treating those same patients as though they were no more than containers for the pathology. As in every other situation, the young learn far more from the actions of their elders than from their words.
Some of those whose writings have addressed such failings in our approach to caregiving have taken great pains to call attention to the distinction between disease and illness. Arthur Kleinman has defined disease as the problem as seen from the point of view of the doctor, and illness as the problem as seen from the point of view of the person who is sick. In The Illness Narratives: Suffering, Healing and the Human Condition, his important work that appeared in 1988, Kleinman wrote that "in the narrow biological terms of the medical model, this means that disease is reconfigured only as an alteration in biological structure or functioning." On the other hand, "By invoking the term illness, I mean to conjure up the innately human experience of symptoms and suffering. Illness refers to how the sick person and the members of the family or wider social network perceive, live with, and respond to symptoms and disability.... And when we speak of illness, we must include the patient's judgments about how best to cope with the distress and with the practical problems in daily living it creates."
Essentially, then, a disease consists of the microscopically or chemically demonstrable manifestations of a pathological process so similar in all people afflicted with it that it can be recognized from a detailed description in a textbook. The evidence of its existence is objective, verifiable by others. An illness, by contrast, is the total of the psychological, social and cultural ways in which the sick person experiences the bodily changes caused by the disease. By its nature every illness is subjective, distinct to the individual in whom it makes its presence known.
But no sick man is an island unto himself. The illness of an individual is experienced and interpreted in terms that he has inherited, and shares with others who are not ill but are like him. It is in "the wider social network" of illness that Anne Fadiman's book finds its focus. Of such networks, Kleinman has this to say: "Local cultural orientations (the patterned ways that we have learned to think about and act in our life worlds and that replicate the social structure of those worlds) organize our conventional common sense about how to understand and treat illness; thus we can say of illness experience that it is always culturally shaped."
Anyone being medically trained in an American urban center (which means almost all of our physicians), but especially those who became doctors in the 1950s or before, has been exposed to a wide variety of cultural influences among his patients. Before the extensive participation of so many working people in Blue Cross and other systems of third party payment, patients who might nowadays be considered members of the lower middle class--and even further down on the socioeconomic ladder--were almost always treated on the ward or charity divisions of teaching hospitals. This meant that many of those admitted to the so-called training services of these hospitals were middle-aged or elderly foreign-born patients who had come to America from Europe in one or another of the large waves of immigration since the last decade or two of the nineteenth century. More than a few of them did not speak English. It was not uncommon to encounter families who were terrified by the system into which they had been plunged, who were unable or unwilling to comprehend its rules or to abide by the decisions of the white-uniformed young men (we were almost exclusively men) who ruled imperiously over their health and sometimes their destinies.
In the hospital where I trained, Yale-New Haven, most of the immigrants were southern Italians, Slavs or East European Jews, but we had a sprinkling of other European groups too, and also the occasional Hispanic, Gypsy or Cantonese. Other than the Chinese, there were no Asians. In addition to these arrivals, New Haven--like so many cities of the Northeast in those days--had recently become the destination of many indigent rural black families, who seemed in our case to have come primarily from South Carolina. In a sense, our resident physicians dealt every day with a microcosm of the melting pot in which not much melting had yet occurred.
Unlike many of their patients, the young doctors on the medical, surgical, and pediatric services had (with some exceptions) been born in the United States, and in almost every case into families that had reached these shores at least several generations earlier. Those few of us who were the sons of immigrants were preoccupied with our own headlong dash toward acceptance by our colleagues and by the waspy corps of professors to whom we looked as mentors and often as models. Multiculturalism would not breathe its first breath for decades. Any hint of ethnic pride was submerged in the interests of the universalism and the uniformity that were unquestioned American values in those days.
Almost all of the very few of us who were but a generation removed from one or another of these immigrant groups tended to keep our distance, choosing to identify not with our patients but with our colleagues, among whom we numbered, of course, our closest friends. Rarely was a young doctor willing to serve as an intermediary for a patient, lest it reveal too uncomfortable a closeness to similar origins. I remember an Italian-born colleague (who had long propagated a rumor about his high-flown lineage) refusing to interpret or otherwise act as an advocate for an elderly and frightened Neapolitan man, because he sneeringly claimed not to understand the man's low-class dialect.
We made our rounds as though among interesting specimens of friendly but incompetent transplants from various foreign proletariats and peasantries, here and there patronizingly sprinkling the few words of their languages that we had found it absolutely necessary to learn. We were amused by their old-world customs, and certainly by their attitudes toward sickness. To us, they were a superstitious and uneducated lot. As much as we might learn from their organs and tissues, we were certain that their lives and their cultural beliefs had nothing to teach us about the practice of good medicine. We concentrated on their pathologies and studied their diseases. We were trained to become, as Fadiman's Neil and Peggy would become, excellent physicians. It would have shocked every one of us to be told we were not good healers.
Many of us would later--sadly, decades later--wake up, the awareness usually being as slow to develop as it was painful. That we awoke was due to an amalgam of reasons. Some of the rousing from smugness was the result simply of time, and its tendency to afflict the self-satisfied and the self-righteous with the experience of their own vulnerability to sickness and tragedy. We finally saw ourselves mirrored in the physicians treating us and our families, whose humanity we so desperately yearned to evoke, and usually didn't. True empathy is granted to few of us until adversity makes inevitable our identification with those whom we have previously perceived as being different from ourselves. For some physicians, it seems not to appear until they have been beaten and bruised by life sufficiently to assimilate the anguish that is part of everyday existence for so many people, and made so much worse by illness and the specter of death.
Some of our increasing awareness was the result of factors far less personal. Demographics had far-reaching effects on the perception of "the other" in the current America, where the figure of the wasp plays ever a smaller role. As the Hispanic and Asian proportions of our population grow, we are finding ourselves immersed in the folkways of ethnic groups much slower and less likely than earlier ones to melt into a unanimity of American appearance and behavior. In addition, the enlarging black middle class has become increasingly a factor in the greater American society, even as a wide-ranging variety of African American patterns of speech and activity have been valued to the point of imitation by recent generations of white youth. Thus, a sense of ethnicity is no longer equated with a sense of inferiority. Not being a quality to be purged, the particularity of one's identity has become a quality to be proud of, to flaunt.
For these reasons, the needs and the customs of so-called minorities have become the very warp and woof of daily life in our country. A physician training in the bustling urban hospital of today cannot properly care for his patients unless he takes into account at least a modicum of the variations in background and worldview that they so overtly bring to their sicknesses. But that is hardly the end of the story. Acting against the humanization of medical practice, against the acceptance of the notion of illness as distinct from disease, is a trend so forceful that it has engulfed the gains made in recent years and quite overpowered them. I refer, of course, to the massive increase in the influence of laboratory science and clinical distance in the evaluation and the treatment of the sick. Today's physician has become a master of detached observation, but less of his patient than of his patient's tissues, fluids, and images as they can be studied by a variety of machines.
Toward the end of the nineteenth century, as medicine began to rely more and more on the discoveries of science, a welcome change occurred in its ability to study disease in a systematic and rational way. The great model for medical researchers became the germ theory, promulgated through the work of Louis Pasteur, Joseph Lister and Robert Koch, in which the objective was to trace specific pathological entities to individual instigating factors. The notion of single causes was enormously productive, not only in understanding the origins and development of a sickness, but also as a beacon illuminating the direction in which proper therapies might be found. The general use of antibiotics introduced in the 1940s provided an idealized example of the way in which the accomplishments of the laboratory might be transferred to the bedside.
By then, X-rays were routine, methods of culturing bacteria were easily available, and much of the guesswork had been removed from the diagnosis of infectious disease. Reliance on detachment and objectivity in evaluating observations and data was increasingly proving to be the key to success in diagnosis and therapy in all aspects of medical care. Even when it gradually became obvious that understanding the progression of a disease might often require investigation of more than one factor, it was clear that the methods of biomedical science were the path toward that goal.
To this scientific orientation toward diagnosis and therapy, we owe the wonders of modern medicine. But the astonishing progress of recent decades has come with a price. Patients who are the beneficiaries of the best of the new medicine are at the same time victims of a paradox that exposes them to its worst: the very distancing so essential to the science of medicine has too often distanced the healers from their patients, from the art of medicine. In the meticulous and necessary attention paid to the bits and pieces of the sick, doctors have not frequently enough looked up to see the entirety of the human being who needs help beyond the reversal of his pathology. The eyes brilliantly on the cure of disease are increasingly blind to the pleading eyes of illness.
Doctors today devote far more time and thought to the words of a pathologist or a radiologist (words that are often not even heard, but read off a computer screen) than to the words of the man or the woman for whose life they have taken responsibility. They are being trained to believe that they can help a suffering man more effectively by doing this than they can by trying to find out who he is; to believe that a woman's sickness cannot be best understood in the form of a narrative obtained through personal interaction with her, but only in the form of an algorithm obtained through impersonal interaction with the laboratory evidence of the pathology within her.
All of this leads back to the greatest challenge faced by contemporary Western doctors: the ever-widening gap between the profession of medicine and the calling of medicine; between the science of medicine and the art of medicine; between medicine's interest in treating disease and its interest in treating illness; between medicine's genius and medicine's humanity.
And it leads directly back also to the theme implicit in every page of The Spirit Catches You and You Fall Down, although its author does not raise that theme overtly until she has expertly woven together all the fascinating narrative threads in the story of a Hmong family's collision with the American system of medicine. The ordeal undergone by the Lees is a massively magnified version of what was experienced by my own Buonfiglios, Czarkowskis and Lefkowitzes; and yet it is such an extreme example of cultural misunderstanding that it may qualify as being unique. But then I remember the Gypsies, and the uniqueness of the Hmong seems a bit less.
Since the fall of Laos to the Communists in 1975, some 150,000 Hmong have fled that troubled land, and the great majority of them have settled in the United States, primarily in California and Minnesota. Their history is a long and tempestuous one, going back to what were probably prehistoric origins in Eurasia, a sojourn of several millennia in Siberia, and then their arrival in China in approximately 3,000 BCE, where in the course of time they chose to become a mountain people as a means of maintaining their independence. During their entire long sojourn in China, the Hmong never in any way intermingled with the indigenous population except when necessary, and fought hard to maintain their distinctness and sovereignty, "in hundreds of small and large revolts." This is the pattern that has characterized their dealings with every national group with which they have come into contact. Each of the many times their independence was threatened, the Hmong responded in one of two ways: they rose in bloody rebellion or fled elsewhere, always becoming farmers, as they had been since the earliest memory of any of their clans. In the first decades of the nineteenth century, half a million of them--having had their fill of Chinese repression--migrated to what are now Vietnam and Laos, with some later moving to Thailand.
In the 1960s the Laotian Hmong were sucked into the wars of their afflicted region by our CIA, which created its largest operation ever in the form of the Hmong Armee Clandestine, a secret guerrilla force of 30,000 soldiers, some of whom were taught to fly combat missions in spite of the absence of a written Hmong language or the ability to speak or read English. As always in their long and turbulent history, the Hmong fighters proved to be skilled and brutal, providing an effective surrogate army for the Americans, but at a huge cost to themselves in terms of massive casualties and the destruction of their villages. When the war ended in 1973, most Hmong families were transferred to temporary relocation sites.
In May 1975, the communist People's Democratic Republic displaced the 600-year-old Lao monarchy, and determined to exterminate the Hmong. Starving, decimated in numbers and might, with thousands of their ablest young men dead in combat, the ancient tribe had no choice but to flee. Foua and Nao Kao Lee were among the huge multitude of couples carrying their few possessions, the youngest of their children and even their elders on their backs, in the long caravan of survivors attempting to trek through the jungle to the safety of Thailand. Recaptured during their first attempt to flee in 1976, they were forced at gunpoint back to their village, which had become little more than a concentration camp. The family endured three more years of persecution before joining 400 other villagers in a second escape attempt in 1979. After twenty-six days of dodging the fire of Vietnamese and Laotian soldiers furiously doing everything they could to ambush them, they made their way across the Thai border, where they were taken to an overcrowded staging camp south of the Mekong River. On their arrival at such makeshift facilities, some 80 percent of refugees were found to be suffering from malnutrition and a variety of infections.
After a year spent in two refugee camps, the Lees were permitted to emigrate to the United States in December 1980. They lived briefly in Portland, Oregon before settling in Merced, California. By then, three of their thirteen children had died, victims of starvation and the dreadful conditions of the refugee facilities. The family arrived illiterate, unable to speak or to understand a word of English, and penniless. But they were Hmong, and determined not to be changed one iota by this latest of peoples among whom they would have to live. Unlike virtually every other immigrant group reaching our shores since the founding of the republic, they had no interest in becoming at all like us. As Fadiman tells us: "The Hmong came to the United States for the same reason they had left China in the nineteenth century: because they were trying to resist assimilation." Or, as more bluntly put by an anthropologist who had worked among them: "Those Hmong are really into being Hmong."
The new immigrants' appearance, behavior, customs, religion and life experience were unlike anything previously encountered by the Americans who met them, no matter how worldly or experienced they might be. Having survived the Laotians and the Vietnamese, the Hmong were not about to be intimidated by supermarkets, superhighways, or the super-efficient American medical system. And they were not about to be intimidated by those who would attempt to dilute their Hmong ethnicity. As Fadiman observes:
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.
Fadiman does not dislike the Hmong--far from it. She admires them not only for their capacity to love and their sense of family and clan loyalty, but also for the very characteristics that vex so many of those who have tried in vain to help them by providing all the benefits of our advanced and highly technologized civilization. As for the Lees themselves, her feelings for them go well beyond admiration. There is no doubt that what she came to feel for them during their eight years of mutual observation and friendship is love, in the natural and easy way that admiration grows into something greater when common values are discovered beneath the carapace of culture, and another's humanity can be seen to glow through the veil of social differences that obscures what binds us to one another.
The origin of Fadiman's affection for the Hmong is an event that occurred on July 19, 1982, six years before she met them. On the morning of that day, Foua Lee, whose age was estimated to be anywhere between 38 and 55, gave birth for the fourteenth time, to the first of her children to be born not only in America but in a hospital. The child, named Lia, seemed normal in every way until she was three months old, when she had the first of what would be many epileptic seizures, a condition called in the Hmong language quag dab peg, literally "the spirit catches you and you fall down." The Hmong believe that such a convulsion occurs when a bad spirit, called a dab, strikes a person so hard that her soul leaves her body. In such cases, the proper course is to call in a txiv neeb, "a person with a healing spirit." A txiv neeb is a kind of medicine man, a shaman who by a complex healing ceremony involving animal sacrifice, prayer, holy water, the invoking of a trancelike state and even the ritual of simulated horseback riding, can retrieve the soul.
And yet Foua and Nao Kao had mixed feelings about their little girl's seizure. As it has in many cultures, including that of our own cultural forebears in ancient Greece, epilepsy signifies to the Hmong that there is something special about its victim. It may even mean that he or she has been chosen to be the host of a neeb, or healing spirit. There is consequently a certain reluctance to be totally freed of such a possibility. But when Lia experienced at least twenty seizures in the next few months, her parents, having had a few somewhat satisfactory experiences with Western medicine in the camps, several times carried her the three blocks from their apartment to the Merced Community Medical Center, a public hospital staffed in part by the trainees and faculty of the Family Practice Residency of the University of California at Davis. To Foua and Nao Kao, Lia's symptoms were being caused by soul loss; to the doctors, "they were caused by an electrochemical storm inside their daughter's head that had been stirred up by the misfiring of aberrant brain cells."
And so the misunderstandings began. For the next four years, through one seizure after another, fifteen hospitalizations, more than a hundred trips to the emergency room and outpatient clinic, and untold numbers of nursing visits to the home, the basis of Lia's illness and the proper course of treatment were constant sources of friction, and of overt clashes, between the Lees and the medical staff at Merced. The two physicians most directly responsible for her care were the wife and husband team of Peggy Philp and Neil Ernst, two of the finest (some say the finest) doctors in the hospital. "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," say two younger physicians who trained under them.
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.... "
Through all the changes in medication, it was never possible to know how much the child was actually receiving unless samples of her blood were tested, because her parents varied the doses on their own, often as a result of having decided--on the basis of religious criteria inscrutable to the doctors--that the treatment was harming her, and actually causing the seizures they were meant to prevent. She had many convulsive episodes that would have been avoided were she being given the prescribed amounts of medicine. And at the basis of the Lees' disagreements with Lia's doctors was the fundamental element that differentiates so-called traditional medicine from its modern scientific counterpart. As Fadiman sees it, "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."
The conflict is hundreds of years old. The approach of science is to separate every problem into each of its smallest constituent factors and then to study that factor in isolation, in order to avoid surrounding influences that might alter the conditions in which it operates. Such methods are the basis upon which have been built the wondrous achievements of the scientific enterprise, including that portion of it which has come to be called biomedicine. But the foundations of virtually every system of traditional medicine are fashioned on the principle that in the real world of nature everything is a part of everything else and affects everything else--nothing can be understood in isolation from the very influences that a scientist tries to avoid in his researches.
Actually, no conflict should exist. The individual phenomena of nature can best be studied by the principles of science, but the findings of the scientific method are best applied at the bedside by utilizing the realization that a human being is an instance of the holistic interaction. Up to a point, physicians understand this, teach it and build their treatments on it, to the extent that they do see individual biological systems--like the biological system that is the human body--as wholes in which all parts influence all other parts. And yet the continuity and the unity of the body with all of nature, so much a part of traditional medicine, has been to a great degree neglected and underinvestigated, and sometimes even scoffed at, by the finest physicians. Even the influence of the mind on illness (and, as we should know so well, on disease) has received shorter shrift than it deserves. When faced with a code of belief based entirely on unproven factors considered not subjectable to the methods of science, modern physicians too often respond with rejection of the entire set of premises on which the code is based. Ironically, the one exception is prayer, as long as the prayer is consistent with the religion of an individual physician of faith. Religious American physicians see no inconsistency in such a stance
Instead of appreciating that the differing perceptions of scientific and traditional medicine have something to offer each other, their respective proponents too often behave like the Lees and their daughter's doctors. Each tries to undo the other's intentions. It is understandable that the Hmong would be confused and mystified by scientific medicine, but there is really no reason why an American doctor should not be able to take into account the traditional beliefs of his patients. Fadiman outlines the problem as it applies to the Hmong. Of the doctors treating Lia, she says:
They could hardly be expected to "respect" their patients' system of health beliefs (if indeed they ever had the time and the interpreters to find out what it was), since the medical schools they had attended had never informed them that diseases are caused by fugitive souls and cured by jugulated chickens... [N]one of them had had a single hour of cross-cultural medicine. To most of them, the Hmong taboos against blood tests, spinal taps, surgery, anesthesia, and autopsies--the basic tools of modern medicine--seemed like self-defeating ignorance. They had no way of knowing that a Hmong might regard these taboos as the sacred guardians of his identity, indeed, quite literally, of his very soul. What the doctors viewed as clinical efficiency the Hmong viewed as frosty arrogance.
As Lia's chart grew to five volumes, weighing a total of almost fourteen pounds, one entry after another detailed the parents' resistance to the best efforts of the medical and nursing staff. When the Lees dug in their heels more deeply, so did the doctors--not only Neil and Peggy, but almost everyone else as well. Here and there an understanding nurse or social worker came on the scene, but for the most part it was the Lees against the American world. At one point, it became necessary to use legal means to take the child from her parents and place her in foster care for an extended period. The Hmong are well known for the affection that they shower on their children, and Lia was the favorite, the little queen, of the household. For Foua and Nao Kao, it was a crushing blow to be separated from her. Not only had their adored daughter been wrenched forcefully from them, but the authorities had brought shame on the family by declaring them unfit to take care of her.
Late one night, Foua tried to explain to Fadiman what soul loss means to the Hmong. Through an interpreter, she said: "Your soul is like your shadow. Sometimes it just wanders off like a butterfly and that is when you are sad and that's when you get sick, and if it comes back to you, that is when you are happy and you are well again." To this Nao Kao added that "sometimes the soul goes away but the doctors don't believe it. I would like you to tell the doctors to believe in our neeb." (The word neeb, or healing spirit, is often used as shorthand for ua neeb kho, the shamanic ritual, performed by a txiv neeb, in which an animal is sacrificed and its soul bartered for the vagrant soul of a sick person.) "The doctors can fix some sicknesses that involve the body and blood, but for us Hmong, some people get sick because of their soul, so they need spiritual things. With Lia it was good to do a little medicine and a little neeb, but not too much medicine because the medicine cuts the neeb's effect. If we did a little of each she didn't get sick as much, but the doctors wouldn't let us give just a little medicine because they didn't understand about the soul."
The doctors didn't understand about the soul and the Hmong didn't understand about the body. That was the cause of the impasse that ultimately led to tragedy. The seizures began to worsen, and everyone grew more worried. Neil prophesied the eventual outcome when he told the Lees that, if the trend continued unchanged, he feared Lia might have an episode he would not be able to stop. And that is precisely what happened. On November 25, 1987, she went into a prolonged convulsion called status epilepticus, a state of continuous seizure that did not come under control for two hours. When it was over, she was transferred by speeding ambulance to the Pediatric Intensive Care Unit at Valley Children's Hospital in Fresno. She arrived seventy minutes after her departure from Merced, having begun another episode of status epilepticus on the way, and with a fever of almost 105. By the time everything was brought under control, there was no longer any electrical activity in the cortex of Lia's brain. She would exist for the rest of her life in a persistent vegetative state.
When Fadiman met the Lees in 1988, Lia was almost seven years old, and had been incapable of purposeful movement for two years, kept alive only by the autonomous functioning of her brain stem. She had no conscious mental activity. Her seizures had not recurred because the motor cortex was dead. And yet she remained the central focus of the family's activities. They spoke and crooned to her as if they had the expectation that her soul would one day return, and they were scrupulous in the care of her body. Now that there were no anti-convulsants or other important medicines to give, Foua and Nao Kao became the perfect caregivers. In their own eyes, they had always filled this role. Now they began to be seen by the doctors in the same way.
During this time, Lia's contact with Merced's medical establishment was through a yearly clinic visit and checkups by the visiting public health nurse, which would gradually dwindle down to one about every four months. But her contact with the Hmong medical establishment continued to be close. She was fed special foods, and given tea made from powdered roots and herbs, some of which her parents bought at a Hmong-owned market and some of which they grew in the parking lot behind their building. When they could afford it, about twice a year, a txiv neeb came to their apartment to perform a ritual pig sacrifice.
It is with one of these ancient ceremonies that Fadiman closes her book. Its last words are the chanted verses of the txiv neeb as he rides furiously fast on his simulated horse, in a deep trance and headed for the skies to try to retrieve Lia's soul: "Come home through this door," he implores it. "Come home to your family--come home, come home, come home, come home, come home, come home." Lia's soul never came home, but neither did the child die. In their own way, her parents have found solace in her life, and have continued to love and care for her as though she were vibrantly healthy, or perhaps as though with a certainty that her soul will yet return. And then their beloved daughter will be as before.
Beginning with her first meeting with the Lees in 1988, Fadiman spent thousands of hours with them, and hundreds more with the wide spectrum of professionals who were involved in Lia's care; she seems to have reviewed each page of Lia's 400,000-word hospital chart with Peggy Philp and Neil Ernst; she has tracked down every possible datum and bit of background information that she thought might explain any aspect of the impasse between the family and the powerful establishment of medicine, law, and government that they believed was arrayed against them; she has studied the history of the Hmong and the culture of Western medical care, and developed a deep understanding of both; she has sought out experts in every area of concern, while at the same time scouring the literature of medicine and sociology, seeking overt information and abstruse clues; she has counselled with herself and with others, and thought long and hard about the whys and the what ifs. The result is a profoundly memorable book.
This is a book that should be deeply disturbing to anyone who has given so much as a moment's thought to the state of American medicine. But it is much more. One senses rather early in Fadiman's narrative that within a short time of becoming well acquainted with the Lees, Fadiman's journey became a personal one, gradually moving far beyond the mere retrospective investigation of an unfolding sociological event. She did not hesitate to allow herself an emotional closeness not only with the Lees and several other of the Hmong she came to know so intimately, but also with their caregivers as well. She let them enter her life, which is probably why they let her enter theirs.
There are no villains in Fadiman's tale, just as there are no heroes. People are presented as she saw them, in their humility and their frailty--and their nobility. I cannot think of a book by a non-physician that is more understanding of the difficulties of caring for people such as the Lees, or of the conditions under which today's medicine is practiced. The empathy that physicians are urged to give is here given to them, no less than to the Hmong. Moreover, Fadiman grasps and recreates the atmosphere of emergency situations far more vividly than such things have ever been portrayed on film. Medical readers will recognize these scenes and these people because they have taken part in them and seen them. Others will intuitively recognize their truth.
But a reader's greatest appreciation of this book must be for its larger message, which applies to the entire edifice of Western medicine: modern medical treatment cures disease, but for illness a little neeb goes a long way. Know thyselves, Fadiman is telling us. You are excellent physicians, but imperfect healers. Perhaps we doctors are the ones who might benefit from the ritual of a txiv neeb, so that we might call out after the part of our profession's soul that has been captured by the regime of essential but unfeeling science, and beseech it to "come home, come home, come home."