Tuberculosis and Healthcare Inequalities: It gets personal

I had tabled this particular blogpost because I felt it wasn't quite complete enough to tackle the controversy that I'm trying to expose. But as this blogs is merely a platform for an exercise in writing, I thought I'd post it in hopes for a lively discussion or searing critiques. 

I’ve always loved a good story, particularly when the subject matter revolves around my favorite celebrity—me.  To start with, I realize my fortune; I don’t have any serious medical conditions and I have health insurance. But sometimes, I want sympathy, I want shock value, and saying you’ve got a sore back when you just finished 5 rounds of disco-bowl doesn’t usually make friends and family come running with a heating pad, foot rubs, and chicken noodle soup. So imagine my incredulity when I tested positive for TB.

This Christmas, when I was in town, I visited my pediatrician, whom I still visit occasionally for inexplicable reasons (mostly because he wears a teddy bear bow-tie) due to a persistent cough and cold. My mother strongly suggested that I get a TB skin test as well, in the same way that she strongly suggested my sophomore year that I wear a helmet and hockey pads while riding in the car with my girlfriends. That being said, I brushed her off initially, but then, on a whim, decided to request it anyways.

Three days later, I came back in with an angry, red lump underneath the skin of my forearm. It was clear. I was positive for the TB bacteria. He called the public health department and ordered a blood test and a chest X-ray, looking wide-eyed. As one of the only positive results in his three decades of practice, I’m pretty sure my case was an exciting break from his routine of baby hernias and snotty noses. After all, most pediatric patients don’t run in high risk circles. Despite my questionable choices in friends, migrant laborers and Russian prison inmates have unfortunately heretofore not been a part of my immediate social network.

But I have sat on a bus so crowded that people clung to the sides, and children laid over rows of seats like plywood. I suppose in that circumstance, an uncovered cough could be problematic. As my skin reaction continued to swell, I thought about all the famous noteworthies who succumbed to TB. Emily Bronte, King Tut, Nicole Kidman’s character from Moulin Rouge, and Doc Holliday, the famous gunslinger from OK Corral. A sanitarium would be the perfect setting for a Gothic romance novel, I fantasized! They called it consumption at the time, which sounds a lot… wetter.

My X-ray, sputum test, and blood work all came back negative. I have the TB bacteria inside of me, but no active infection. I AM NOT CONTAGIOUS.

But, as the reality and scope of the disease sank home, my nonchalance over a potential 9 month round of antibiotics sickened me. I was ashamed. I was treating a potential TB infection as a joke, a ploy for attention and some well-placed references to Florence Nightingale.

But it’s not. It’s not a joke. It was only a joke to me because I’m a lucky one. Put simply, I’m healthy, I’m young, I’m well-fed, I am part of one of the most developed biomedical systems in the world. I’m rich, comparatively. I have health insurance. I’m the neatly pieced and presented Exhibit A of Market-based Medicine’s display at the science fair. I have no reason to be scared.

It’s a matter of access, haves and have nots. Consumption, as it was known in the olden days, did not discriminate back then. Egyptian mummies are buried with ancient curses and some bling, but their skeletons spell TB.  Emily Bronte, a high-born Victorian (although perhaps constitutionally delicate, as she would, no doubt want us to imagine her) died of it. 

So where are the posh patients now? All I see are poor patients. Because in 1,323 B.C. or in 1848 A.D. water was dirty, travel was hard, and black, graveyard themed 40^th birthday parties were swiftly followed by an actual funeral. Doctors were quacks and antibiotics a thing of the future. Modern medicine hadn’t made its grand debut, with scrub-clad high kicks and latex-gloved jazz hands, a show performed only for those who can pay the price of admission.

But now, the 1.3 million people who die each year are concentrated in the poorest countries in the world, where all those hardships of the past are present realities—Nepal, Haiti, Malawi house the burden of disease. Treatable diseases, such as TB, HIV, and malaria, doggedly follow the poor, and if they don’t run fast enough, will snatch them by the ankle and bear them to the ground.  For many, TB is a death-sentence, or at least, another giant setback for those already fighting the long defeat of poverty and malnutrition.

So tell me, in a world where Twitter can start a revolution, a man can play putt-putt on the moon, you can take a satellite photo of your own garage, and medicine can reattach limbs, why can’t we prevent poor people from diseases we’ve had cures for since before that inaugural lunar golf game? Does this showcase the progress of humankind? I think not.

What it shows, in stark, dark relief, is that we haven’t gotten our priorities straight. It can’t be scientifically impossible to ensure that neither rich nor poor die from these diseases, we just… can’t be bothered with it. The rich aren't dying from it, so why are the poor? We must ask ourselves this question, and not be afraid to stare at the ugliness of the answer.   

But I’m lucky. I can take the possibility of a disease that kills 1.3 million people each year as a God-given gag gift. A trivial anecdote to pull out at during that summer camp ice-breaker. 

There, my friends, penned into every syllable of this text, is packaged privilege. 

Into the field: Some things never change in Piyarjung.

For this blogpost, I've decided to give you a little blast from the past, for two reasons.

1) Sapana and I revisited the same village we were in EXACTLY one year ago, with much the same barriers, relationships, and annoyances. Indeed, this place hasn't changed at ALL, except their village development committee did install waste-baskets every 100 yards.

2) I'm not feeling very original and sometimes, you just gotta recycle old material. I mean, "I Dream of Genie" ran for several decades. 

After another grueling bus ride, Sapana and I arrived in Piyarjung on February 27. The dynamics of public transportation never cease to amaze me. In addition to the colorful decor, sharing seat space with live chickens, and surrendering all control of whether you reach your destination in one piece or careen off a cliff, a tendency towards motion sickness among rural Nepali women adds to the excitement.  Many passengers do not have a lot of experience on motorized vehicles, and although their stomachs can stand up to the rigors of dirty water and serious spice, they are no match for the buckwild bus ride. For this reason, each bus is fully stocked with plastic bags in a Kleenex box near the driver. If one was not sitting beside a motion-sick village woman, one might hardly notice this phenomenon, as rural women toss their cookies with class. When feeling green, they ask the conductor to pass them a plastic baggy as nonchalantly as if they were ordering a round of beer. The main event is often composed and understated, with none of the loud, dramatic theatrics that I like to incorporate when I'm feeling seasick. When finished, they toss the bag out the window (advice: if forced to walk beside a bus, always watch for incoming vom bombs), and order another round.

Piyarjung is a village of about 100 houses, about 80 of which are Gurung. As I mentioned in a previous email Gurungs are an ethnic group closely related to Tibetans. They have their own language and are native to the highlands. Thus, these people have calves the size of your head.  We stayed at the house of Takur and Dhane Kumari Gurung, paying them per diem for room and board. Before striking the deal, we visually confirmed that Takur and Dhane Kumari owned a water buffalo, as y’all already are aware of my penchant for buffalo milk tea and yogurt. After striking the deal, we were informed that the buffalo was pregnant, which, for those of you not well versed in issues of livestock husbandry, simply means no milk. Balls.

Note: This visit, the buffalo had died. So again. No milk. 

Our host family lives in a small house and share a courtyard with their relatives, who have a young son named Safal, the apple of my eye. Safal is about 2 years old, and is the only son of aging parents. His mother is 40, and suffered 4 miscarriages, as well as bore 3 children who died in infancy. He woke us up every morning during his breakfast, knocking on our door and yelling “Didi! Didi! Uthna!” which means “Older sisters! older sisters! Wake up!” as his mother followed after him with a spoonful of porridge. Baby mealtime, rather than strapping the tot into a high chair and playing airplane, involves mothers simply chasing after their children as they toodle around the yard, kicking chickens and throwing rocks and attempting to consume any and everything other than the pursuing porridge. I am still seriously considering a covert operation to steal Safal.  

Check out this little piece of work! Safal! 

One of our main tasks in this research phase was/is to build rapport and relationships with village teenagers, and then lure them into an interview. To do this, we visited the school nearly every day, sometimes to watch class, sometimes to socialize during recess. The second day after our arrival, we went to the school to introduce ourselves. While sitting in the office, the headmaster mentioned that the intermediate English teacher (Takur) would be absent for several days. “But you can teach the class,” he said with a grin. Naturally, Sapana and I thought he was joking, so I giggled and said “Well, I do speak English very well.” I realized in immediate retrospect, as I was herded across the school yard and into the classroom, with nothing more than, “here’s your chalk and eraser,” that joke was, indeed, misunderstood. Yes, people, they still use chalk. Sapana and I walk into the room to find 35 seventh graders staring, whispering, and giggling. To my great chagrin, these kids can barely read English and can’t understand the difference between “What is your name?” and “Where are you from?” After some failed attempts at encouraging class participation, I sang a song (Madonna’s “Like A Prayer”) and told some slightly inappropriate jokes (with complete confidence that they wouldn’t understand a word, much less a punchline). My performances were received with blank stares and open mouths, but apparently were a hit. The kids requested that we visit their class on a daily basis.  

The village of Piyarjung is nestled into a hillside (if a hillside can have an altitude of 8500 feet) and is quite spread out, requiring extensive climbing and descending to merely go to the nearest tea shop. Because the entirety of the data we collected would put you in danger of falling asleep on your laptop or mobile device, I will brief you with some descriptions of the people we encountered. Vast, sweeping generalizations are discouraged for anthropologists, but I’m gonna make them anyways. However, true to ethnographic form, I will include anecdotal data to support my points.

11)     Gurung teenage girls are extremely shy, i.e.) resemble a flock of pigeons when you approach them to simply compliment them on their plastic hair clips, dispersing in a quiet panic, not completely fleeing, but keeping a distance where you can’t really start a conversation while eyeing you from the side of their head. But they can’t be coaxed in with food. We tried.

22)     Gurung teenage boys have great legs. I’m sure the girls do too, but due to point #1, I wouldn’t know for certain. We often found ourselves at the community soccer field, watching their games, in order to “build rapport” with the youth.

33)     Gossip is rampant. Gurung women’s primary pastime (other than running a household and chasing their children around with a spoon and a bowl of mash) must be gossiping and fingerwagging. I noticed that the older women don’t really treat you as an adult until you are married. As I am not hitched up with a man, I know nothing of the world, am wild and irresponsible and in need of a good chastisement. Furthermore, perhaps because they have nothing better to do, they like to talk about you behind your back about things you did that they never actually witnessed, resulting in increased finger wagging and condescension.  For example, Sapana and I, at the beginning of our field work, attended a wedding at which we drank 4 glasses of raksi over the course of 5 hours. We asked Dhane Kumari if it was OK to drink raksi, and she assured us “Yes, but not too much. Have fun,” as she ordered us 2 glasses. We also danced, which, obviously, meant we were, thoroughly and irreparably and shockingly, schwasted. Apparently, our definitions of “too much” and “have fun” don’t quite match up. So by the end of our stay, according to the popular belief, we were getting drunk every day and stumbling around the village, conducting our fieldwork in yeast-induced stupor. Oops.

44)     Gurung women also wanted me to marry their sons, not because of my impenetrable honor and striking good-looks, but because of my U.S. passport. When I replied that I already have a boyfriend, and he’s American, they would merely wave their hand, as if shooing away a fly, and casually counter, “No matter. Marry both.” Although I disapprove of their gossip, I can’t say that I wholly disapprove of these women’s ideas.

55)     Gurung men are quite forceful. If they want you to drink raski, or take tea, or eat rice, or teach a middle school English class, good luck getting out of it.  But at least attempt a pretense of refusal. In the end, it will get you nowhere, but it makes you look a little more reputable. For example, at the wedding, Sapana and I were literally dragged onto the dance floor despite our objections and multiple attempted escapes. And don’t even try to refuse raksi, your efforts will be futile and the women will talk about you anyway. In the end, I have strong suspicions that the men and women conspire in this matter; the men provide the material, and the women finish off the spectacle with all the backbiting they can muster. Endless entertainment!

66)     Gurung babies are the cutest in the world!

To be honest, our time in Piyarjung wasn’t the most fun I’ve ever had in the field. There were undoubtedly some really kind, funny people and we encountered far more hospitable situations than not, but to be truthful, the aforementioned generalizations were some of the biggest challenges of our fieldwork—I mean, those soccer shorts nearly drove me to distraction!  We did, however, learn some important lessons, as noted below.

11)     Don’t drink raksi, ever.

22)     Get married, or at least say you have.

33)     Stalk the school girls, like a cat in the tall grass, in order to gain an audience with them; look for a dead end to chase them into. It's not stalking; it's ethnography.