In Sickness and In...Sickness.

Travels in India are invariably filled, for us, with intermittent, unpleasant, but usually non-serious digestive problems. Travel in Brazil, as it turns out, has been filled with unexpected respiratory problems and topical infections. I say "unexpected" because, having lived in New Delhi's thick smog for a year, we were looking forward to the pure, clean air of rural Brazil. As I write, we are in the heart of the dry season, and the air is anything but pure and clean. The dirt roads have become dust roads, everyone is burning their lots and their yards and their trash, and the result is respiratory havoc. In Dancing Skeletons: Life and Death in West Africa, nutritional anthropologist Katherine Dettwyler chronicles the trials and tribulations of fieldwork in Mali with a child. Having left her husband and their son, who has Down's Syndrome, in the States, Dettwyler takes her older daughter along. Already racked with guilt about leaving her husband and son, Dettwyler describes with great poignancy the crisis she faces when her daughter contracts malaria and nearly dies. This book has been coming to mind a lot lately. In our 6 months in Brazil, Annabelle has been on more than 6 courses of antibiotics, for everything ranging from a stubborn sinus infection, to an ear infection, to impetigo covering half her body, to what she has now--a serious kidney infection. Had we had better access to a pediatrician and a laboratory for a urine test, we could have caught the UTI before it progressed to her kidneys. I'm going to recount at length the process we engaged in to get diagnosis and treatment. My purpose is not to complain, but to illustrate how high the barriers to medical care are here, and how in learning to adapt we’ve gained additional insight into some of the daily struggles faced by those in our research community.

We first noticed symptoms but waited for several days, hesitating because the doctor who visits the settlement twice a week is not a pediatrician, usually prescribes Annie a course of antibiotics without any alternative treatment suggestions, and has intimated in previous conversations that he thinks we're a little crazy for always bringing her to the doctor. Then Dave was out of town for a couple of days on a research trip. Then her symptoms seemed to disappear. Then the doctor wasn't visiting the settlement. Then it was the weekend. By this time, Annie was beginning to run a fever. We fought heatedly about whether or not this was serious enough to take her on the long trip to a pediatrician. Finally, we got worried and took her on an hour-long truck ride to the nearest bus station in the small town near the settlement, then got on a 2-hour bus to the nearest town big enough to have a pediatrician. Unsurprisingly, the doc wanted a pee test, but all labs are closed on Saturdays and Sundays. With a prescription in hand, the next day we made the three-hour trip home and began to try to figure out how to get a pee test done from rural Brazil. First we had to make the hour-long trip into town by motorcycle on a dirt road to get the collection bags. Then we were only able to collect a tiny bit, but the lab told us to bring it anyway. It wasn’t enough. We had to try for two more mornings to collect enough pee for the test, not an easy feat. We dropped it off one day and had to go back the next to pick up the results. Then we had to call the pediatrician in the city, and visit the consulting doctor who just happened to be in the settlement that day, to make sure we were going to proceed with the correct treatment. He was the one who finally took a careful look at the report and informed us that this was a serious kidney infection, not just a UTI. By this time, Annie had had symptoms for two weeks. The total cost for all the transport, consults, tests, stays in a hotel, and medicines was around $300—more than most people here make in several months.

The barriers here are clear, and high. One key problem is the remoteness of the place we live. As I mentioned, there is a general practitioner who visits the settlement twice a week for a few hours in the morning. He is good at what he does, but is limited by the poverty of most people here and by the fact that there are no testing or diagnostic facilities nearby. Any test, imaging, etc, must be done in town, which is the hour-long truck or motorcycle ride. If it's anything beyond a routine blood or urine test, you have to undertake the much longer bus ride.

A second major barrier is the lack of infrastructure in this region of Amazonia. As one of the poorest parts of one of Brazil's least-populated states, this region's roadways are pitted with pot holes that could swallow a car if given the chance. The distance between the towns I've mentioned is actually quite small, but the state of the roads makes it impossible to move quickly.

A third major barrier is the cost. Medical care in the settlement is free, but if one needs to consult a specialist (in this case, that's anything other than the GP), one must choose to either go through a long certification process to get government-sponsored access to free care, or to pay out of pocket for private care. We opted for the latter since we're not entitled to government care anyway, and the expenses were high.

Unfortunately, the stakes here are also clear, and high. The health of one's child--and the responsibility one feels for putting that child in a situation not particularly conducive to good health--is an onerous burden. We feel racked with guilt about the near-miss we had with this kidney infection, especially juxtaposed against the background of the many other illnesses Annabelle has had since we arrived here. I am always quizzing mothers in the settlement about what they do to keep their children healthy, and their responses differ little from what we do. Why, then, does Annie get sick so much more than other children here? Why, for example, does a cold go away within a few days for most children here, while for Annie, it almost invariably turns into a sinus infection requiring treatment? Do they get just as sick, but people view symptoms differently (e.g., green snot and a fever are not viewed as worthy of a medical consultation and a course of antibiotics, while in the US, those are considered red flags)? What does a parent do when faced with the tough choice between family togetherness and good health?  And what insights do these experiences yield into the daily lives and struggles of those in our field site?

Last week, the settlement inaugurated a gleaming new health post. While still quite modest by hospital standards, it is lauded as the state’s most advanced for a rural area. Its recent construction was the result of a long political struggle between members of the community and the state, requiring various forms of lobbying and protest. Yet, most of its rooms stand empty, and it is only staffed by trained medical personnel two days a week. Perhaps as a hold-over from earlier days when absolutely no medical care was available, people here maintain a palpable lack of emotionality to both sickness, and it turns out, death (something Nancy Scheper-Hughes wrote about at length in Death without Weeping). We’ve lost count of the number of times a woman has nonchalantly mentioned in passing that she lost a child at an early age from a preventable illness, injury, or choking accident. Nearly every woman we know over the age of 35 has lost at least one. We feel scared by the  “What can you do?” expression we encounter as we worriedly scurry about, asking how to get lab tests, or whether it is abnormal that our child get sick with such frequency. But we also are beginning to understand, feeling our own measure of resignation that sometimes, unfortunately, there's very little that one can do.

We Can't Do This- We Can Do This

About a year and a half ago, we found ourselves standing on the side of a 6-lane divided road in central Delhi, jetlagged and having just learned that Jo was pregnant. We each stood there, silent for a few minutes, watching morning rush hour traffic crawl by and breathing bus fumes. Finally we looked at each other, saw our own panic reflected in the other's eyes, and freaked out. What followed was a veritable smorgasboard of catastrophizing. The general gist of the conversation was, “Oh God, we can't do this.”

 Flash forward to about two weeks ago. We're sitting in the cab of an ancient pickup truck retrofitted with bench seats and a metal cage on top for cargo. We join approximately 10 people and heave a year's worth of our suitcases, stroller, and other accoutrements onto the groaning roof. The truck bumps and squeaks its way slowly along a rutted dirt road, taking us to the rural Brazilian settlement where we will be living for the next year. Annie is crying, Jo is getting sunburned, David is getting irritated, we're all dripping sweat. This time, there's only a single terse exchange: “Honey, you can't do this kind of thing with a family. This is ridiculous.” Same idea—we can't do this.

  We've both reflected quite a bit on the similarities between these two memories, and on the very real feelings of panic that choked us both at one point or another as we've traveled around while pregnant, giving birth, and with our (now) 8-month-old. We've realized that there have been many times when we thought we couldn't do it, but we did, and quite a few times when we thought we could do it, but we couldn't. In this post we discuss some of the challenges of doing fieldwork with a family. What happens when reality is really too much, and how can compromises be negotiated? It is neither solely about rising above the challenges of doing fieldwork with a family and riding off into the sunset, nor about retreating with one's proverbial tail between the legs. It's about negotiating the professional and personal juxtapositions that are kids in the field.

We'll draw another example from our first days as a family in Brazil. To provide a little background, David's research is about the potential linkages between political participation and environmental education in the Brazilian Landless Workers Movement (MST). In 1996, 21 MST members were massacred while marching as part of their struggle for agrarian land reform. Survivors of the community have created an annual 10-day educational event leading up to the anniversary of the massacre.

 Group discussion following debate on agroecology

 Che: "To be young and not a revolutionary is a genetic contradiction." Who knew?

  Discussion group on gender with monument to those massacred--made from burned Brazil nut trees-in background

 The daily protest, closing the highway for 21 minutes in memory of the deceased.

This encampment on the side of a rural Amazonian highway was a key event for David's research. However, sleeping under black plastic tarps on the side of the highway, in the rainy season, with unspeakable heat indices and little shade made the chances of encamping for 10 days with an 8-month old pretty much nil.

 Home sweet home?

 Turns out black plastic is actually fairly waterproof. Emphasis on fairly.

 The 2000 liter open shower

First, we both acknowledged that there were the things we HAD to do to keep everyone safe and comfortable. For example, avoiding heat-stroke, dengue, and dehydration. The onus is greater when only one member of the group speaks the language, as was the case for us in India and now in Brazil. Then, there are the things you WANT to do. Oh, man, it would be so nice just to skip taking an hour-long motorcycle ride tomorrow in the heat of the day to the encampment and instead hang out in the river with my daughter. Similarly, I think I'll go to the encampment another night so I can have dinner at home and not wake up in a mud pit. Or the reverse: I'd really like to participate to the fullest extent in this 10-day encampment, and get that sought-after 'emic' perspective. Early on we decided that David would go each day to the encampment, and at some point we would try to spend two nights there as a family. This seemed realistic in principle, but the day that we tried to encamp as a family turned out to be the hottest of the entire event, and Annie started getting diarrhea. Not a good combination for any involved. Annie was clearly not happy, and as a result nor was Jo; David was trying to conduct interviews with little success as it became increasingly clear that this family encampment was just not going to work out after all. A marital skirmish ensued and we re-evaluated and compromised again: David would continue to commute to the encampment during the days, and would spend two separate nights encamping with his research community. We think this example illustrates the fact that combining fieldwork and families is a lesson in tradeoffs: we can't do this— we can do this. Situations that you would be comfortable in, e.g., sweating it out on the side of a highway for 10 days, are sometimes not fair to ask of your family, particularly when they can't answer back. But at the same time, having Jo and Annie at the encampment during the day was incredibly rewarding, both personally as well as professionally as a multitude of people wanted to hold her, bathe her, and watch her during the day (Annie, not Jo, although Jo wished someone wanted to dunk her in a big tub of cool water). We realized that it wasn't only the MST members that had been learning during the week at the encampment; we had as well. And importantly, although David's style and depth of participation in the event did not turn out as he had originally envisioned it, he came away feeling he had collected enough material in those 10 days to write an entire MA thesis, or at least a dissertation chapter. We can't do this—We can do this.

Happy Annie=Happy Us