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 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.
