Tuesday, April 21, 2015

The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures

            “The Spirit Catches You and You Fall Down”* sounds like it’s describing someone getting into bed after a full day of tripping acid. In Hmong culture, it translates to “epilepsy”… *I was close*. For them, sickness is inextricably linked with the soul; thus they have txiv neebs, or shamans, who treat health issues by serving incorporeal needs and communicating with ethereal beings, namely dabs. A person could incur an illness if their soul wanders from the physical body for whatever reason. They could have an ADHD soul that is distracted by something shiny and floats away, the soul could be scared off by certain noises, the soul could grow weary of its surroundings and bail, etc. If only I could use that excuse at work and say that I must leave because my soul has decided it is bored of my environment. There are certain rituals that help retain the soul inside the body, but at the onset of sickness, the soul is the immediate culprit.

            The particular case of epilepsy is complicated among Hmongs-- the seizures are indicative of the individual’s ability to communicate with a higher realm. As such, they don’t necessarily immediately scramble for an all-out cure. The notion of epilepsy as an endeared bestowment of special powers is not purely Hmong; epileptics like my boy Dosteovsky, Lewis Carroll, and Vincent Van Gogh openly praised their disease for the surges of creativity that accompanied their seizures. The idea of bits of “wellness” being embedded in an illness is lauded by Oliver Sacks in The Man Who Mistook His Wife for a Hat. By the same token, epilepsy is also a severe neurological problem that can lead to some serious shit.

Eastern religion and culture is so mysterious and tantalizing to me, but sometimes Eastern-Western divisions seem insurmountable. In a comical example, one time I dropped my phone and it was taken to an MTA employee from New Delhi. When I went to retrieve it, he refused to believe that it was mine because my phone background is a beautiful depiction of my favorite Hindu god, Ganesha. We quarreled about it for quite some time until I finally convinced him that white people could dabble in India stuff too. As a token of goodwill and in order to encourage cultural exchange, I recommended the NSYNC Christmas album as representative of America.

            The Lees—the family depicted in this book—have their world rocked as a result of Eastern-Western miscommunication much more detrimental than me not having my phone for twenty minutes. The parents, Foua and Ni Kao Lee, arrived in Merced, California as Laotian refugees in 1980. Foua birthed an epileptic child, Lia, in 1982. Lia was hospitalized numerous times and her doctors continued to note medical noncompliance from her parents. Over time, the relationship between the Lees and Lia’s physicians became frustrating as hell for both sides. Eventually, Lia had an uncontrollable epileptic attack that left her in a vegetative state for the rest of her life. At age four, she was pronounced brain dead. So, who is accountable for this tragedy? Let’s look at both sides.

            The Hmong people have a negative perception of the American health system to begin with. At one point, a panel of Hmongs in Thailand sincerely asked if “American doctors eat the livers, kidneys, and brains of Hmong patients” (Fadiman, 32). Of course we do, when no one is looking and we have barbeque sauce handy! But truly, our practices stand in such stark contradiction to the belief system inherent in their medicinal approaches. For instance, they believe that the body has a finite amount of blood that it does not replenish; therefore, they are weary of blood draws and operations involving blood loss. They take issue with organ donation because it will interfere with their future reincarnation as a complete being. The list goes on.

            I think it’s very easy to write off this line of thinking as naive or inept…but that’s also very impudent. Fadiman consistently stresses that we are intransigent in our own perspective; we hail our point of view as correct above all else. It is the classic snare of ethnocentrism that keeps us from entertaining the possibility that “our view of reality is only a view, not reality itself" (Fadiman, 276). So, it is hasty to instantly devalue Hmong animistic shamanism at the expense of Western medicine. You might disagree with me, but then you’d be wrong (see what I did there?).  

            On the other hand, the doctors at Merced Community Medical Center hit a brick wall any time they tried to effectively treat Lia. They had no understanding of the details behind Hmong reluctance to their method of care and extremely limited access to adequate translators. Even when they were able to properly communicate complicated dosage regimens to the illiterate, non English-speaking Lees, they had no means of ensuring this was correctly adhered to at home. Surprise…it was not. Furthermore, it was virtually impossible to discern whether the Lees were defying their life-saving prescriptions out of stupidity, cultural misunderstanding, or outright parental neglect. Ultimately, that led to the involvement of child services and the Lees lost custody of Lia for some time. The Lees, who were extraordinarily loving parents attempting to navigate the unfamiliar world of Western medicine, were devastated and confused by the state’s involvement. The doctors, who made it their mission to serve the patient to the best of their ability, were horrified by the Lee’s homeopathic insistence and the haphazard way in which they administered Lia’s medications. After a while, “Lia’s case had confirmed the Hmong community’s worst prejudices about the medical profession and the medical community’s worst prejudices about the Hmong” (Fadiman, 253).

            A startling example of the culmination of misinterpretation, anger, and exasperation between these two sides surfaced when Nao Kao was told that his daughter had just a couple of hours to live (Fadiman, 178). This is already problematic for a Hmong, as the explicit prediction of death is thought to encourage a dab to go ahead and pull the plug. Additionally, Nao Kao was asked to sign some documents indicating consent that he was voluntarily taking the patient home in critical condition. Indignant, Nao Kao understood the hospital’s two-hour prognosis as a threat and thought that they were forcing him to sign off on an agreement to definitively end Lia’s life. Frightened, he abruptly ran away with Lia in his arms, setting off an emergency “Code X” throughout the hospital. Nao Kao did not want his precious daughter to die because of the doctors (of note—the Lees thought that Lia had succumbed to this state because the doctors had given her too much medicine).  On the other hand, the resident on the case at the time was finishing up a 33-hour shift and was not trying to put up with any of Nao Kao’s bullshit.

So, we’ve established that the Lees have a tenuous relationship with the hospital at best and Lia suffered as a result. But it’s not like anyone here was maliciously trying to deprive Lia of good health. I started to ask myself some hard-hitting questions that emerged from this painful situation. Should doctors give a patient suboptimal care and cater their therapeutic regimen such that the patient’s caregivers are more likely to comply? What constitutes discriminatory practice and how far should a doctor tailor his approach in light of the culture at hand? Where do parental rights and child rights start to clash, and when should the government get involved? What kind of reasonable culturally sensitive expectations can there be for doctors who already require so much schooling? How much stress can they be asked to endure when it comes to dealing with opposing cultures and subpar cross-cultural resources? How much assimilation should we mandate before it actually becomes a submergence of their culture completely? This is a book club GOLD MINE, you guys.

At the end of the day, there’s a bottom line: Lia is a vegetable. We’ll call her an asparagus because I really like asparaguses as of late. I found myself getting a little worked up at times when I wondered if I respect cultural values at the expensive of life. My answer is a resounding: no. But there were better ways to handle this predicament—something which Fadiman hopes to shed some light on. Of course, hindsight is 20/20, but we can learn something about the benefits of conjoint treatment—an approach that in this case would integrate shamanistic and Western practices. Heal Lia’s body and her soul. The prospect of a “consensual reality” is not totally infeasible (Fadiman, 95). 

Not only did I think Fadiman was an absolute boss in carefully elucidating Lia’s medical progression and giving a balanced account of the justifiable frustrations of both sides, she also seamlessly integrated an elaborate lesson in Hmong history. We’ve all learned about the highly publicized Vietnam War, but I know no one, including myself, who has heard about the concurrent war in Laos pointedly dubbed the “Quiet War”. The United States C.I.A., troubled by communism embodied in the Pathet Lao, backed the Royal Lao by recruiting thousands of American-trained Hmong soldiers as proxies. There was a repeatedly guaranteed “Promise” involved in which the CIA assured the Hmong that their fighting was not in vain (Fadiman, 201). If the Pathet Lao emerged victorious, the Hmong would be abetted and granted American refuge; instead, when the commies won, the United States got the hell out, leaving behind the very men they had sent to battle on their behalf. The Hmong were slaughtered by the thousands. The ones who did manage to survive fled to Thailand—an unfathomably dangerous and trying journey. Gradually, the remaining Hmong were filtered into America, mainly in the 1980s. Now, having lost every single possession and many family members/neighbors along the way, the Hmong come stateside and are blamed for gobbling up welfare. Rather than being grateful for their service, we’re criticizing them for their lack of immediate American self-sufficiency. It’s akin to the veteran-homeless problem. We’re assholes.

And welfare is certainly a factor in this book. The Lee’s situation is complicated by the fact that they could not afford to pay a single penny for the hundreds of hours of healthcare that was necessary for Lia. Not to mention Foua birthed seventeen children. Again, this book is a wellspring of discussion topics—power dynamics in the medical system, the cyclical nature of limitations for the poor, the structure of welfare programs, veteran aid, etc.

             Overall, I was incredibly impressed with Fadiman’s presentation of such a heartbreaking event. She seems invested in the story—it took her eight years of research—but she also successfully surfaces all of the facts and the range of point of views. Everyone was trying to take care of Lia in the best way they knew how and I now feel that it’s unwise to categorically say that medical treatment trumps cultural beliefs. At the same time, I’m not one to wholeheartedly espouse cultural relativism. Moreover, this book taught me what it is to be human and understand others in their humanity. A Western “encounter with the Hmong is a confrontation with radical difference—in cosmology, worldview, ethos, texture of life…Unfortunately as [the French critic] Tzvetan Todorov reminds us, ‘The first, spontaneous reaction with regard to the stranger is to imagine him as inferior, since he is different from us’” (Fadiman, 167). Fadiman takes these weighty reminders and grounds them in a story that is both relatable and baffling. The cultural barriers were simultaneously shocking, entertaining, and understandable. For instance, Foua admits that prior to America, they had “never seen a toilet before and [they] thought maybe the water in it was to drink or cook with” (Fadiman, 182). These little snippets of Hmong perception alone earn the book 5 out of 5 camel humps, not to mention Fadiman’s ability to educate without maintaining that she knows all of the answers.

*Fadiman, Anne. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus, and Giroux, 1997. Print

Wednesday, April 1, 2015

The Man Who Mistook His Wife for a Hat

            Let’s get some nonfiction into the mix, shall we? Oliver Sacks’ The Man Who Mistook His Wife for a Hat* is not all about one man who thought his wife resembled a fedora (although that sounds like literary gold). Rather, it is a collection of case histories that Sacks, an esteemed neurologist, has recorded over his fifty-plus year practice. It is split into four parts: Losses, Excesses, Transports, and The World of the Simple. The first two sections are concerned with so-called “deficits” or hyperactivity. The “transport” chapter deals with atypical stimulation of specific brain regions that leads to perceptual hallucinations. The final portion refers to the “mentally defective” (patients with low IQs, autism, etc.).

            Sacks is interested in the human condition as a whole; a diseased person cannot be so easily parsed that their identity is unaffected by their illness. That is not to say that one becomes an entirely different person as a result of their diagnosis. Simply, identity and illness meet, interact, and transform each other. He emphasizes that there is a person beyond the disease and that treating that person entails much more than just addressing the physical.

Consequently, he has a real problem with a purely rigid, systematic approach to medicine. He maintains, “Empirical science, empiricism, takes no account of the soul, no account of what constitutes and determines personal being. Perhaps there is a philosophical as well as a clinic lesson here: that in Korsakov’s, or dementia, or other such catastrophes, however great the organic damage and Humean dissolution, there remains the undiminished possibility of reintegration by art, by communion, by touching the human spirit: and this can be preserved in what seems at first a hopeless state of neurological devastation” (Sacks, 39).

            It’s a beautiful thing—he really believes in his patients. He fights for them to gain control of their symptoms AND grapple with the psychological side effects. Many of the cases demonstrate a triumph of will, as the patients turn inwards to find creative ways to cope with their physical limitations. Several patients teem with innovation. For example, Mr. MacGregor creates a custom pair of glasses with a level (like one used in carpentry) extended from the rims to help him walk straight, whereas beforehand he unknowingly strutted with a noticeable tilt (Sacks, 75). Here is where identity and illness converge, as patients strive to assert themselves in the midst of their condition. “He may be faced, from early childhood, with extraordinary barriers to individuation, to becoming a real person. The miracle is that, in most cases, he succeeds—for the powers of survival, of the will to survive, and to survive as a unique inalienable individual, are, absolutely the strongest in our being: stronger than any impulses, stronger than disease. Health, health militant, is usually the victor” (Sacks, 125). One cannot help but think that his own words are applicable to his current plight, as he recently announced that he has terminal cancer (My Own Life).

            As a whole, this book surprised me with its brooding, existential undertone. Some patients suffer from diseases afflicting their memory capabilities, so Dr. Sacks makes some unscientific inquiries as to the relationship between memory and soul, i.e. how one’s personality might be affected by the lack of a continuous stream of memories. What remains of a person who has lost some (or even all) sense of reality? At one point, he asks the nuns at his hospital if it was “possible that [the patient] had really been ‘desouled’ by a disease” (Sacks, 37). Talk philosophy to me, Dr. Sacks.

            Furthermore, he encourages us not to look at illness and wellness in such a binary framework. He encounters numerous paradoxical situations in which some patients find that their so-called “illness” actually provides them with a benefit… so much so that they do not wish to be treated. Could an illness have a healing power? Intrigued? *You’ll just have to read for yourself*

            I find it quite remarkable that he is so bent on restructuring the medical perspective so that patients might fully flourish. Still, this book confuses me a little. Perhaps I’m breathing words into Dr. Sacks that aren’t true, but I feel as though at its core, this book is meant to be accessible to the layman; yet, he is still an erudite professor…and it shows. There is nothing wrong with sounding scholarly as a scholar, but I think that it complicates the voice of his book. I wonder if the formality of his writing interferes with his ability to paint his patients as truly human. And isn’t that his whole point? He cries out for medicine that incorporates meaning—a flexible practice that acknowledges the existential—but crams his book with a pretentious air and jargon that distracts the reader from envisioning the patient in this holistic way. As a result, I think I like him very much as a person and a doctor—not necessarily a writer. As an aside, he is allegedly celibate, which is funny insofar as Dr. Sacks isn’t getting any in the sack.
That being said, the cases he presents are wildly entertaining. One man literally tries to pick up his wife’s head, confusing it with his hat due to his visual agnosia (Sacks, 11). A medical student gets amped up on a bunch of drugs (cocaine, PCP, amphetamines) and then is left with an outrageously keen olfactory system for weeks (Sacks, 156). If this makes you want to do PCP, check out what happened to Big Lurch. In a later chapter, autistic twins each shout the number of matches that fall out of a box the instant it hits the floor—111 matches (Sacks, 199). The book is abound with truly fantastical stories though some are communicated too obliquely; thus, my review balances out at a cool 3 out of 5 camel humps.  

*Sacks, Oliver. The Man Who Mistook His Wife for a Hat. New York: Touchstone, 1998. Print.

*Sacks, Oliver. “My Own Life: Oliver Sacks on Learning He Has Terminal Cancer.” The New York Times. 19 Feb. 2015. Web. 1 April 2015.