Follow Up

I meet Isabella the day I arrive at La Escuela de la Montaña. She lives behind a small wooden fence, in a tin roof house of four wooden beams at the end of a dirt footpath. The house is divided into a living room and a kitchen with a tarp, though the entire time I’m with her, I never see the living room. I spend my time either at the small table on the front landing, overlooking her dirt yard, or in her kitchen. At the far end of the kitchen is a wood burning stove-top, where there is always a griddle frying tortillas. To the left is a stack of vegetables and kitchen equipment, and on the right there is a small table with a plastic, floral-print tablecloth. Atop it are sugar, tea, and instant coffee. The room is lit by an uncovered florescent bulb, the universal lighting in Guatemala. In her front yard are a series of wooden poles, shoved into the dirt, with clothes drying on the wire between them. Nearly attached to the house are two other shacks where her neighbors live.

Isabella is short and stocky. Even in the absence of her warm, easy smile, her eyes are turned up. She gives me a seat on the front porch, offers me chicken and frijoles. She’s constantly making tortillas, patting the dough between her hands and quickly rotating the disc between her fingers, until she places the perfect pancakes of maize and water on the stove. Her Spanish is too fast for my two weeks of practice, though we manage to cover what food I like (everything), the white, scrawny puppy tied up by the fence (Toby), the problems he causes in the kitchen (todo), and the Spanish names of the vegetables in her pantry (forgotten). Her kids pass through: her youngest, Emerson, who is around 6, and the elder, Oliver, 9. They’re terrified of me. Other families in the community regularly eat with students from La Escuela de la Montaña, but I’m the first in their home.

La Escuela de la Montaña is a Spanish language school in a rural part of Guatemala. It was created as an offshoot of Proyecto Linguistico Quetzalteco (PLQ), a school that prioritizes learning Spanish within and through the history and culture of Guatemala. PLQ is based in the city of Quetzaltenango (popularly known by its Mayan name, Xela), but because roughly half of Guatemala’s population lives in rural areas, the school prioritizes students experiencing life outside of cities, in the untouristed parts of the country. These spaces tend to be poorer than the cities, and the area around La Escuela de la Montaña is no exception. The two neighboring villages, Nuevo San Jose (where Isabella lives) and Fatima, were founded by families fleeing coffee fincas. The history is multilayered and specific to each finca, but, in short, Guatemala has always had a single cash crop, coffee. For most of its independence, farming was done plantation style. Families were paid sub-subsistence wages and received a small plot of land for their own use. Typically, the workers were ethnically indigenous, while the owners were blancos, or the white descendants of the Spanish. All of the workers’ health care, supplies, and housing were provided on the finca, and families farmed for themselves only after the work of the plantation was finished.¹ This system persisted until the end of the Cold War and the rise of neoliberalism, when workers were given the “freedom” to search for work on the open market, without a commensurate increase in wages. At the same time, a collapse of world coffee prices during the 1990s forced many workers to labor without pay. The villagers-to-be of Nuevo San Jose and Fatima spent years organizing to successfully sue for back wages, after which they were summarily fired. Some of the leading labor organizers helped form these communities around the same time La Escuela de la Montaña was created. La Escuela seeks to be a part of these communities, dedicating a set portion of tuition to projects in the villages, such as supporting local education and providing scholarships to students. More immediately, they pay the women who are providing our meals. Jobs are scarce, and the men of households travel each day to nearby cities to look for work. The women generally stay at home, providing childcare and cooking, with little contribution to household finances. Our payments give them a more formal place in the home economy. All of which informed my decision to attend PLQ over other language schools.

More personally, I traveled to Guatemala after assiduously refusing to learn a foreign language over a year of travel. I cannot remember a single lesson from the high school Spanish classes I faked my way through. Languages have scared me for the same reason as dancing lessons: I’m inherently bad at them and improving means public failure, an open vulnerability I loathe. Plus, I thought, I would have to deliberately restrain the depth of my conversations to the level of my language. But I’m starting medical school, entering a health care world where many patients feel more comfortable in Spanish than in English, and I want to bridge a little of that distance. What’s life without humiliation anyway?

Guatemala has calmed since the height of the civil war in the 1980s, but it remains dangerous, even if those threatened are mostly people who live there. A man was shot and killed on the road near the school a couple weeks before I arrived, likely the victim of gang violence. It was almost certainly personal, but the school insists each of us walk home with a student partner, accompanied by our respective host moms. Isabella and I walk up the uneven cobblestones, her rushing to keep up with my steps, while another student and his host chat behind us. We manage a few words about the weather and then fall silent. I can compose phrases in my head, placing the building block verbs I have mastered into familiar patterns: Tener, ser, estar, querer, poder. But then there would be a follow-up, and a follow-up, and a follow-up, and I am unable to relinquish control. Passing by the shrine of flowers in plastic bottles, placed where the young man had died, I manage “muy triste.”

“Un accidente,” she responds. We walk the rest of the way in quiet.

Classes start the next day. They’re one-on-one for four hours, outside in straw-thatched ranchitos. Every afternoon it rains so loudly that we can barely hear each other, even with the straw dampening the sound. Class is a mix of irregular verbs, conversation, and mosquito slapping. By the second day, my legs and feet are covered in bites. The rain drives them inside, straight to us, looking like a snack. I’m struggling this week. My maestra is trained as an elementary school teacher and has the reserved manner to match. Class is structured formally, repeating the same subjects, working out of a textbook. She seems amazed that an adult my age keeps making the same silly mistakes, throwing in prepositions as the spirit moves me. But the space is beautiful. The daily rains make the world a verdant green. A coffee finca is in the back of the school, a steep hill leading to a river, above which is a lookout where I sit and make flashcards, next to deep purple flowers. The gardener, Jorge, is a miracle worker, creating an ordered jungle. Three dogs, Coyote, Hache, and Luna run and play in doggy bliss while I lie in the hammock on the front porch, half-reading a novel.

Isabella’s children are still scared of me. During meals, they play with marbles in the yard. Isabella suggests I join to cut the tension. One day, after the rains have stopped and the ground has had a chance to dry, I head over. Kids have no capacity to target their vocabulary and asking them to slow down gets me blank stares. After a brief struggle to communicate the rules for marbles, they give up on educating me and suggest tag with a light push. We run around, and I try to play my role, giving their short legs a chance to catch up. Little Emerson keeps coming for me, and my long arms swing around, nearly knocking over the laundry poles and sending a day’s work into the mud. As I duck around the small hands and thin poles, my feet slide out beneath me. I fold into the mud, coating my pants and jacket. The kids laugh, Isabella looks mortified. I try to smooth things over, but my Spanish fails. All I can manage is repeating “está bien” over and over and excusing myself to go take a bath.

When I return for dinner that night, Isabella is still worried. I reassure her it’s fine, it’s a good story, it was my fault. I don’t know how to set her at ease. All we manage are pairs of sentences, sprinkled with pauses as I look up words. There is no back and forth. I feel my way around conversations about feelings, without the confidence to address them directly. But the kids are comfortable with me, now that they’ve seen my true self. I bring down a Richard Scarry book of common words for us to read. I practice the Spanish and tell Oliver the English equivalents. He’s whip smart, picking up words fast and intuiting English sounds. We make plans to play fútbol at the school tomorrow. But the whole next day, Isabella seems distracted. I wonder if I’ve committed a faux pas, or if she’s still thinking about my fall. But we’re almost strangers, and our conversations remain limited to Como estás? Todo bien, y tù? Muy bien. As pro forma as can be.

Of course, it has nothing to do with me. When I show up to dinner, her kids wave hi and continue playing. Isabella is quiet for a minute until I ask, “Como fue tù tarde?” OK, she replies, breaking our implicit vow of substanceless chit-chat. She spent the afternoon at the cemetery. Her son died three months ago in a car accident. He was 18, returning home from Xela, where he was studying on a scholarship given to him by La Escuela de la Montaña. He was so lively, all the other kids are so serious, Isabella says. Her smile stays, but tears start to leak from her eyes. She asks if I want to see a picture, passes me a photo, crinkled from handling, tinted by the smoke. He’s in a marching band, carrying a snare, one hand lifted as if to hit the drum head. The boy is tall, good-looking, in a black button-up shirt and jeans. I say he’s handsome, and set the photo next to my plate. Isabella tells me her daughter is about to give birth. She’s around his age. Life is happy and sad, she says. I think she’s trying to count her blessings. I can’t form the words, or the words to follow the words. I offer a hug. It seems like the thing to do.

It’s only later that it occurs to me I don’t need the words. If I could offer a more complex sentiment, would the words be any less empty, any less sufficient for the scale of her grief? My presence has little to do with nouns and conjugations. It is only presence. It is only hearing and seeing and knowing.

We rotate señoras each week to reduce the stress placed on each house and to spread the income throughout the community. My last night at Isabella’s she greets me with a smile, introduces her daughter. She’s very pregnant. I search in my head for the words. “En inglés ‘congratulations,’” I mumble, more to myself than anything else. She says, “Oh! En Español, embarasada,” pointing to her stomach. Embarasada means pregnant. The conversation moves on, a little comedy of errors for the next gringo visitor to navigate. I ask if I can make a tortilla. Isabella says sure, then watches as I produce a sad, misshapen pancake. Isabella, without a trace of sarcasm, pats me on the back, “está bien.” Enough said.

The next week goes by in a rush. My new instructor is the best I had at PLQ. She forces me to talk, but corrects my mistakes with such grace that I feel comfortable. We even manage to crack a few jokes, and I start to see the edges of conversational Spanish. My new señora is a nearly deaf 79 year-old woman, so my mealtime chit-chat focuses on the rain. I still owe the kids a fútbol game. I stop by and call Oliver over. Oliver has learned how to navigate my Spanish and now communicates mostly with hand signals. He indicates I should wait and goes to gather a crew. The game goes well, though I’m supplanted by a Jesuit priest-in-training named Ian who has played since he was 4. The kids love him. When I invite them up the next day, the first question is if Ian will be there. My efforts to buy their love are all for naught, though Oliver is bad enough at fútbol we at least bond over our shared bookishness.

The last day rolls around. I go to say goodbye to Isabella. She asks me what has become a common question in my last week: “Vas a volver?” Will you return? I say I hope to. She says that she prays that I will, that I have meant so much to her in the last couple weeks, that she only started taking in foreign students after her son’s death. I’m speechless, at a loss for words in every sense. I give her a last hug and walk back to the school.

What do we offer each other when our worlds crack open? I am tempted, always tempted, to solve, to change, to make reality something other than what it is, to use persuasion to transform circumstance. But in the immediacy brought on by limitation, by placing myself within the moment, I find depth. I find health, but not a cure. A cure would deny Isabella her right to grieve, would imagine some mortal state where her loss is restored to her. Health is found in mutual recognition, in how we know each other, in a space beyond language. I can’t go on. We’ll go on.

I’m starting medical school at UNC-Chapel Hill. I want to get my hands dirty and participate in the art of healing. I think this will be my last post here. I will find another forum for writing, I’m not sure where. I want to write about other subjects, or find ways to write about death outside of a travelogue. To everyone who read any of this, thank you. Your generous thoughts and eyes have pushed me to write and think more clearly. Hope to hear from all of you soon.

^{1. For a great history of the brief moment Guatemala was freed from this system, and the United States’ role in crushing that dream, read Bitter Fruit: The Untold Story of the American Coup in Guatemala.}↩

Watson Conference Presentation

The following is the presentation I gave at the Watson Conference at Bryn Mawr College

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I realized I was going to die when I realized I was going to go bald. Of course, I’d known intellectually, but looking in the mirror at a brand new, and steadily growing, widow’s peak, catching the thinning spot on the crown of my head in pictures, was the first time I understood my invincible body was not eternal, that it would continue to change, and eventually decay, and eventually stop.

I’m half joking, but I can guess everyone here has had a moment, whether a dramatic near death experience or mundane fading or sagging or shifting, that brought our end into focus. In a sense, that was what my Watson was about.

That was the more existential side, and I’ll come back to that. At its heart, the day-to-day of my project focused on how we care for people close to death. I worked as a nursing assistant for hospice when I was younger, and I hope to go on to a career in medicine, maybe in palliative care. When we talk about medicine, we focus on how we treat broken bones and heart attacks, things with defined beginnings, middles, and ends. But so much of health and healing is a process, without easy conclusions. Spending so much time around palliative physicians taught me a few things. First, you’ll never meet a kinder community. Thousands of miles from home, I got hugs and open ears from strangers. Second, palliative care is far more revolutionary than I ever knew. It breaks down our earliest assumptions of what domains fall under healing, opening the frame to include every aspect of our selves, and in doing so, removes the primacy of biomedicine to be replaced with an interwoven quilt of disciplines and approaches. I saw how in caring for those close to death, we can reimagine our care all the way down the line.

The Watson is greater than the sum of its anecdotes, but let me offer a brief illustration. I remember when I was at a hospice in Soest in the Netherlands. Almost all care was provided by volunteers, with only a few critical pieces conducted by nurses. I spoke with the director about how they dealt with the very end, when I imagined the need for medical care was greatest. She stopped me in my tracks: “There’s nothing wrong with them. They’re just dying.” Sure, sometimes a nurse had to issue morphine, but generally, people wanted someone to sit with them, not do anything in particular.

The lynchpin of this realization came when I was at Pallium India in Kerala. There, I saw a clinic without resources, struggling to provide basic medicine, and yet moving above and beyond what we can accomplish in the States. The community provided most of the care, and because it was the community, they knew of all the pain the families suffered. The family gossip was a critical part of patient contact, a genogram in every case history. Pain was seen beyond a 1 to 10 scale, and the patient relationship couldn’t end at the hospital door.

It was a different kind of medicine than I had seen in Europe or the States, particular to the context and culture of Kerala, but its vision aligns with the heart of palliative care. Holistic and interdisciplinary, but not just as buzzwords. Your allegorical heart taking the same priority as the one that pumps blood.

But despite my breathless enthusiasm, there’s a limit to palliative care. Even at Pallium, the relationship is bounded, centered on a case or a discrete set of symptoms. There’s a deeper pain tied to the very fact of death, that is a part of every life even in the absence of illness. Or maybe pain is the wrong word. Pain is what we feel when we lose someone. Anxiety is what we feel when we realize that one day we will be lost. As I heard from a man in a pub in Dublin: “every couple weeks I wake up and realize I’m going to die. And it’s…terrifying.”

In my travels, I found the spaces that had done the most work to address this anxiety are religious. My spiritual background is complicated, to say the least, and it seemed time to sort out my relationship with the whole thing.

There’s an idea that religion is a balm for this fear of death, offering an easy comfort, a crutch, an opiate in line with those used by palliative care. But in every religion I encountered, death was seen as a violence upon the world. From the Bible: “Therefore, just as sin entered the world through one man, and death through sin, and in this way death came to all people, because all had sinned.” In Hinduism, a sign of this age’s degeneracy is our short life span. African traditional religions have multiple narratives for the origins of death, most at their heart stories of human foolishness or greed.

Certainly, all of these faiths offer comfort of some kind, but it’s a complicated comfort from staring the terrible reality right in its face. And it’s a comfort based in particular contexts.

The Hindu nexus of the extended family, the Netherlands staunch agnostic individualism, these approaches are so different that trying to describe the nature of the comfort each offers really would go beyond the time I have here. Even nominally the same faith, Christianity, is reshaped by country’s needs. In Ireland, Catholicism is tied to nationalism. One can be an atheist Catholic, because to stop being Catholic is to stop being Irish. Whereas Botswana, a far more explicitly religious country, they navigate a narrow trail, coming to terms with the faith’s colonial origins while at the same time adapting it to fit the existential pain of the HIV/AIDs crisis.

All of which is a bit tough to cover in ten minutes. So what can I say? I’ll stick with what ended up being the big takeaway for me. I’ve learned to love cliches, sayings whose meaning is obscured through unreflective repetition, transforming the profound into trite. Here’s my favorite for right now, one that has specific ramifications for a 23 year old who has spent the last year surrounded by the morbid: Live in the moment.

It can be tempting in a year studying death to see life as an interlude between two states of nonbeing. Look ahead a bit and the scalp is shiny, regardless of its current coverage. But this year, when I talked to people who seemed to have managed to quiet their minds, who actually seemed to have found peace, they seemed to delight in the part of life they were living. In my moment, a 20-something, the flirtations and uncertainties of so many possible futures are the grist that will reshape me, in the same way I see my past leading to the self I am right now. The unpredictability of the future matches with an ordered sense of progression, moving from ambition and adventure to stability and contemplation. The theologian Richard Rohr talks about a move in life, one that should come with age, from chronological time, the sequence of one thing after another, to deep time, a sense of consciousness based in contemplation. It’s a move from dualistic thinking, imagining life as a series of either/or choices, to an experience of being. If the Watson has given me one thing, it would be the capacity to seek out this sense of unlabled existence.

I’m not sure I’m getting myself across, and maybe it’s moving away from the core question of how we live with mortality. Let me let someone else speak then. Here’s a poem I read my first week in Dublin, that kept popping into my head all year, that says it better than I could hope to.

Meditation on a Grapefruit

by Craig Arnold

To wake when all is possible

before the agitations of the day

have gripped you

                    To come to the kitchen

and peel a little basketball

for breakfast

              To tear the husk

like cotton padding        a cloud of oil

misting out of its pinprick pores

clean and sharp as pepper

                             To ease

each pale pink section out of its case

so carefully       without breaking

a single pearly cell 

                    To slide each piece

into a cold blue china bowl

the juice pooling       until the whole

fruit is divided from its skin

and only then to eat

                  so sweet

                            a discipline

precisely pointless       a devout

involvement of the hands and senses

a pause     a little emptiness

each year harder to live within

each year harder to live without

“Precisely pointless,” a devotional to the little moments of grace we have every day. Boundedness, temporality, these are the forces that give us an instant in the reality of the infinite. Without hyperbole, those moments are the gift we are given by death, the ability to make a moment count. Thank you. And without hyperbole, the gift of that understanding is what the Watson gave me. Thank you.

The Botswana Retired Nurses Society

A peek at Victoria Falls

My contact with the Botswana Retired Nurses Society (BORNUS) is its chairwoman, Joyce Tamocha. She is a retired nurse, though as I’ll come to find out, that doesn’t mean she isn’t busy. Joyce worked in a variety of healthcare roles for the government until her nominal retirement in 2006, but now she’s at the clinic in the Maruapula school in Gaborone. Her main patients used to be old people and babies, so caring for teenagers has been a shift. On a cabinet in her clinic is a white paper with “Please note that an observation has been made that some students use the clinic in order to bunk tests.” She needs a of diagnostic exam for required for exam-shy students.

Joyce invites me to visit BORNUS’s campus, right outside Gaborone in the village of Tlokweng. There are a couple small buildings built out of converted trailers, with a few examining rooms and offices, a small library and a daycare for children. I’m introduced to the Director, a woman with the same face as my grandmother to an eery degree, her smile matching through a different skin color.

A bigger peek of Victoria Falls

She offers me a brief history of BORNUS. It originated as an interest group in 1999, with the initial hope of establishing an elder home, but after the emergence of “the scourge of AIDS” and a call for action from the President, the nurses decided to step up and help. Now they try to meet a diverse set of needs, from daycare for orphaned children and children of ill parents, alcohol and drug rehabilitation, support for grandmothers, and, most relevant to my work, home based care and palliative care.

All of these programs are reliant on a patchwork series of grants, recited off the top of the Director’s head, but which I would need a flowchart to track. There’s an inherent instability to the system. Breaks in funding cause staff to leave, or year to year arbitrary shifts in sponsor’s mission goals create whiplash between different priorities. A group will pay to build a new day care so the client capacity is increased, but won’t pay for more teachers. Sometimes when funding runs out, the Botswana government will provide bridging funds, but these are temporary, just to cover a short term gap.

Right now, palliative and home based care are unfunded, which means Evelyn Tsae, the retired nurse heading these programs, and her team are currently working without any pay. Medical supplies come from local clinics in exchange for BORNUS identifying and monitoring at-risk patients. The BORNUS home-based care team does community outreach and patient evaluation, referring relevant cases to a government social worker that coordinates with the clinics. My sense is BORNUS is one of several organizations helping to integrate the national healthcare system, filling in gaps of resources and monitoring.

I’m told I can come back in a few days around 9 AM to join in on home visits. I make the mistake of showing up fifteen minutes early. The only car BORNUS owns had to go to the bank this morning, so we’re going to have to wait. I sit in Evelyn’s office, half of a converted trailer, with the heater on blast, listening to the winter wind whip around outside.

Finally, at 10:15, the car is back and we’re ready to leave. We drive out the gate, but then realize it’s teatime. We head back, and I’m served full plate of food, sausage and bread and muffins and tomatoes, which I eat by myself in BORNUS’s library. A bit more than tea time. I try to eat fast so we can get on the road, though when I step outside, everyone is still snacking in the truck Time to leave for real, though when I get out, everyone else is still snacking. Two hours after our original schedule, we head out to see patients.

Maun

I need to be careful here, because Botswana is a very small country and what wasn’t identifying information in Kerala is in a village with as few people as Tlokweng. So rather than going through specific cases, I’ll give a few general impressions. The cancer cases had progressed much further than anything I had encountered before, necrotic flesh and a lost ear. A man needed a bandage change, but we lacked hot water and, it turns out, bandages. The emphasis seemed less on medical care than on talking with caregivers, especially where the patient had a long term disability like a head injury.

We head back to the clinic and I debrief with Mma Tsae. We talk about the patients and she comments on how few resources are available, the fact they have to share transportation across the whole organization, the financial instability and uncertainty. She ask me, “can you make any difference? Is this just your studies?” I feel a twist in my gut. I’ve often heard this question in Botswana. It places me in a bind. On the one hand, there is a long history of colonialist approaches to aid, white foreigners coming in and offering high tech, expensive medical knowledge that is unworkable in the Botswana context, or well-meaning agencies offering two year grants and then leaving BORNUS high and dry. On the other, what am I doing here? Isn’t there something exploitative coming and poking around, writing my notes to further improve myself as a person but giving nothing back? Explaining that I have the money to travel for a year, but somehow can’t help buy a car? I am apologetic, offering a suggestion of an NGO that offers grants, aware that it this is totally inadequate. ¹

Within this unresolved tension I also see problems that have nothing to do with scarce resources. When I visit, all the local clinics on which BORNUS depends for basic medical equipment are rationing the supply. While the Ministry of Health has allocated resources for this year’s gloves, diapers, etc., they are still negotiating contracts with suppliers. Apparently, this is a yearly problem with shortfalls every March through July.

Without government support, simple building blocks of medical care, like disposable gloves and adult diapers, can be prohibitively expensive for donation based organizations. But these shortfalls aren’t seen across the board. During my time in Botswana, I heard a recurring theme: why spend for the dying in a nation where so many are sick? Reports from folks working around HIV/AIDs clinics suggest that that care has a high level of coordination and follow through, and the decline in the infection rate agrees. And in a country focused on development, with limited resources, children are a higher priority. Don’t get it twisted, there’s a concerted government effort to improve palliative and home based care, but there are a lot of competing priorities and right now palliative care just isn’t at the top.

There’s also complicated set of cultural, economic and biomedical relationships at play that’s worth trying to tease out. There’s the fairly common a cultural aversion to telling people they are going to die,² believing that doing so will at best remove the will to live and at worse curse them with death. But there’s also the ways biomedicine’s capacities and limitations are understood. Julie Livingstone’s phenomenal book Improvising Medicine discusses the particular anthropological understanding of oncology in Botswana. At the peak of the AIDs crisis, ARVs arrived with an almost mystical power, returning people to something like normal lives. A simple pill regimen, staving off a societal collapse. But post-ARVs, people suffer from diseases with less clean solutions:

“…patients like Lovemore Makoni [a cancer patient] face a situation in which the oncological cutting edge keeps edging up costs and therapeutic intensity with what are sometimes only marginal payoffs for metropolitan patients, while patients in impoverished contexts are often ignored wholesale for lack of funds. In middle-income countries like Botswana patients receive care from clinicians like Dr. P [a German expat, the only oncologist in the country at the time] who are buckling under the weight of growing caseloads, while struggling to adapt metropolitan knowledge, technologies, and goods to African biological, technological, institutional and economic circumstances.”

As a medical specialty, oncology, while offering tremendous relief of suffering and longer lives, lacks the clarity one often finds in treating infectious diseases.³ Some forms of cancer can be pushed into remission, sometimes even cured, but with many cancers, it’s a task of extending life by weeks, months, years, often in a diminished capacity. This is especially true in Botswana, where the limitations in medical integration mean cancers are often detected later, when reversing course is nearly impossible. Biomedicine tends to be more attuned to frameworks of acute than chronic conditions, something also at play in metropolitan nations. Add in the limitations of resources scarcity and, as Livingston describes it, communicating that nothing more can be done is read as a refusal or a condemnation, rather than a limitation of economics and science.

Palliative care grew out of oncology, and some of the challenges in Batswanan palliative care can be seen as reflections of oncology’s struggles. Even at BORNUS, patients on the palliative service are viewed as sad lost causes, described with phrases like “isn’t it a pity.” The idea of palliative care as a support for other care hasn’t taken root, and its role in assisting processes of dying is often constrained to pyschosocial support for caregivers. The problem of pain is something that biomedicine offers tools to address.

But perhaps I’m just in a limited frame, bringing with me metropolitan notions of how dying should happen. Sure, these cancers are new to Botswana, but death isn’t. The angles from which I have understood death have been hospices and biomedical institutions, but everyone acknowledges most death happens in the home here. Who am I to say there isn’t adequate support? Perhaps this is a classic example of a Western model of medicine creating a problem, and then offering up a solution. Three months in Botswana, and all I know is that I don’t know.

^{1. In my final conversation with Mma Tsae and the Director, they asked me to reflect carefully on any criticisms I may have. A Ministry of Health official had come by and warned them to keep an eye on what I write. Often foreign researchers publish about how terrible the medical care is, without any regard for the resource-scarce context. I try to put them at ease and explain what I see as the reality, that I see a collection of people coming out of retirement to try to help their community, hamstrung by inadequate money and administrative challenges. But I also have to note that there are other challenges not related to resources, but to prioritization. That’s what I’m digging into here, but try to keep in mind that there are a lot of people trying to cover a lot of bases in a nation that is just stabilizing from one of the worst epidemics humankind has every faced. The HIV/AIDs epidemic brought the Botswana average life span down by over ten years. The fact they have universal medical coverage still shows a degree of good governance and national spirit the US would do well the imitate. ↩}

^{2. The notion that a doctor has an obligation to inform the patient is actually a relatively recent development in Western medical ethics. ↩}

^{3.Okay, some cancers are tied to infectious diseases, an ontological distinction Livingstone draws out in considering which cancers are “visible” to the biomedical view of Africa. Really, it’s a very good book! Also has a stunning chapter on pain as imagined and crafted in the Batswana community. Worth your time, 5/5. ↩}

Letting Things Happen

Oh hey, it’s an elephant

The woman who cleans my flat in Botswana lives in the certain knowledge that we are staring down the end times Every day brings confirmation that morality has leaked out of this world. One day her phone is stolen out of her hand in a combi, the next it’s the false prophets misleading people from the true faith. This morning she saw an overfull combi hit “on its belly,” with the police stealing injured women’s handbags. I’m unsure the veracity of this story (Botswana’s police are known for their honesty),¹ but while her specific fears may be from a certain religious niche, the depth of religious belief and the reading of the world through the lens of faith is common here. The phrase “it’s in God’s hands” or “God will provide” is not an idle cliche. It’s a way of being. While the notion that we are in the end days is probably no more prominent than in the US [Maybe less. You guys doing ok?], there is a pervasive sense that there are larger forces at work, outside of our understanding. Sometimes it manifests in a religious framework, sometimes in less existential forms. A Batswana author, Lauri Kubuitsile, answered a question from a Londoner of what she missed most about home with “fatalism.” Expanding on her thought:

“In Botswana, people accept that life sometimes goes wrong. Problems happen. Sometimes things don’t work. Many questions have no answers. Sometimes the outcome you expect is not the one that you’ll get. It’s just the way it is. There’s something very comforting about that for me. It alleviates a lot of responsibility.”

But here is where I get tripped up. Does this attitude apply to death? Kubuitsile argues yes, of course it does:

“In America, if you say someone died, people need to know what happened. Something must have gone wrong. A 94 year old woman dies and people will want to know why, who messed up, what caused her death. “She went to the hospital but the oxygen couldn’t save her,” they’d say. It’s okay then. There’s an answer. The oxygen failed to work. As if death is not a natural part of life. In Botswana, people are allowed to die and no one gets blamed. Death is part of life, something to be accepted because that’s just how it is. No one needs to accept responsibility for messing up.”

Woah, it’s a bunch of elephants!

 

At the same time, when I talked with Doreen, a traditional African Religions professor at University of Botswana, she emphasized how the cause of death shapes death’s meaning. Within many African traditional religions, those who die properly become ancestors, dwelling in a world similar to ours, interacting with and directing the lives of their blood kin. To become an ancestor one must die a “good” death: living a full life, getting married, having children, and dying of natural causes. By contrast, a death from a car crash or a fallen tree, or a death in the prime of life are archetypal bad deaths and can lead to a malevolent spirit that haunts the living. Ancestors and evil spirits must be assuaged and are considered a part of day to day life, without a divide between the material and spiritual realms. Deaths are attributed to some ultimate cause, some action that forced a reaction out of the universe, whether the directness of witchcraft or a cosmological comeuppances for some wrong done.

So there’s a cosmology of both deep interconnectedness and, for want of a better word, indifference. Our actions have far-reaching consequences, but sorting out the cause of a specific event is a fool’s game. It seems like a question of control.

Let me illustrate with a counterpoint. In Western medicine, the ultimate goal is a “good death,” a controlled descent, free of pain in all of its dimensions. A prototypical example of this, and a case of retaining control, is the story of John Shields. The article itself is beautiful and worth reading, but the short version is this: John Shields was diagnosed with amylodiosis, a progressive disease that left his extremities numb and his mind and body severely weakened. Under Canada’s new physician assisted suicide law, John elected to receive a cocktail of drugs and end his own life on a day of his choosing. He designed a wake for before his death, a chance to say goodbye, and the non-denominational spiritual rituals to follow his death.

At every stage, the individual controls the terms of their death, from the rituals to the time. It’s in a sense the ultimate triumph over death’s control. Death may win eventually, but it has to be on our terms. It may dictate what happens to us, but we know why and when and how it will happen. ²

Here, stories like John Shields’ prompt shock. The idea of a doctor killing someone, even if they had asked for it, is terrifying. And the notion that one could go as far as John Shields as to create a whole spiritual artifice for an individual would be unheard of. Funeral traditions often fuse Christian and traditional elements, but they are carried down from some authority, either the church or the tribe, not just based on preference. Ending your own life is as far away from natural causes as one can be, regardless of one’s medical condition. It goes further than Kubuitsile’s description. To know and cause the death is to do harm, not merely investigating something that is better let be. Life is something that happens to you. It’s in God’s hands.

^{1. I don’t know if I ever told the story of my encounter with the Indian police. Once I was staying in this AirBNB next to a temple in Trivandrum. I went out for a couple drinks with a friend in the same flat. On our way back, we found the road to our house had been blocked off by police armed with what looked like automatic weapons. They told us we couldn’t go back that way. We replied that our house was there and we sure would like to get away from the mosquitoes. They replied that we would have to come back in the morning, submit our passports to the main office and get a residency pass. This wasn’t going to work, so we forced the head honcho to come down. He asked us if we had money for a place, clearing up the terms of negotiation. I only saw two Bollywood movies while in India, but both had bribeable police at their heart. Anyway, eventually it became clear we could just take a ten minute walk around, though we still had to argue to leave.↩}

^{2. Let’s be clear, this is an extreme example of Western death care. Most palliative and hospice workers I know have complicated views on physician assisted suicide. But the core ideology is the same. We can decide when it is time to let go. I wrote about the theoretical basis of euthanasia here and here ↩}

The Search For Social Workers, or the Triumph of Bureaucracy

The Ministry of Health

I’ve spent the last few weeks trying to figure out the deal with the home and community based care (HCBC) I’ve been told was at the heart of palliative care here. After getting lost in Princess Marina Hospital and multiple unreturned phone calls, I decide one day to start at the top and wouldn’t stop until I found someone willing to explain things to me. I started at the Ministry of Health, a towering building of exposed steel at the far end of the government complex. I stride inside, ask my question. I’m told to go to the Ministry of Local Government, a shabbier brick building right across the street. Entering, there’s a cluster of men around the front desk. I say “dumelang,” somehow implying I speak fluent Setswana, and I’m immediately lost in a mess of foreign syllables. My terrified face provokes a laugh and I’m told to go “over there,” a finger pointed to a point far off.

Oh dear.

I wander in that general direction, doubling back as some unemployed men outside the district labor office point in the opposite way in exchange for a few pula. Once I’m certain I’ve seen every possible government building, I ask another woman and she gives me the first concrete direction: It’s next to Masa.

Somewhere in the government complex

Those of you unfamiliar with Gabs, if there’s one place every foreigner knows, it’s Masa. It’s an upscale hotel in the Central Business District basically built for well-off foreigners.¹ Unfortunately, it’s another 30 minute walk away and the early cool has given way to a redhead scorching, midmorning sun. I arrive sweat-soaked and disheveled. There’s another pause while folks figure out exactly who will have to deal with me. After a pause, a very kind woman informs me that here, they just issue the top level policy, that I should go to the Gaborone City Council (GCC) to see how HCBC actually works. I try to explain that I’m interested in the top level policy, that it will inform how I see the day-to-day, but it’s clear I’m being shown the door. I get a copy of the policy and leave. The GCC is back and past where I came from, and I’m already tired.

I’m also told I should write a brief letter explaining who I am and what I’m doing, in case this blog becomes a viral hit and the HCBC staff at the GCC needs CYA. Given that it’s lunch and governments around the world shut down for meals, I grab a cup of coffee and type something at Masa. On my long walk back, I grab a quick bite to eat and find a print shop. Arriving at the GCC, I see a sign indicating HCBC is in Block B, Office 27. Jackpot. I ask someone finishing their lunch for directions. “Oh, it’s right over there.”

So it goes.

The GCC is a set of L-shaped building laid out doorway to doorway in such a way that at any given moment, it’s impossible to ascertain where I am in relation to any other place. I wander for thirty minutes, passing up promising offices for the sake of the foretold Office 27. Not once do I see an office below 35.

I decide to double back and try one of the earlier promising options. Unfortunately, the Escher-esque layout leaves me scrambled and confused. I retreat to the front and start over, stopping at the first office with the word “social” in its title (Offices of Social Welfare, 60-65). Confused office workers try to find the secretary to help me out, but she’s still at lunch. In a moment of serendipity and proper paperwork, my letter winds its way to Flax Setlhare, who, while confused what the hell this kid is up to, seems willing to humor me.

Flax is the principal social welfare officer, placing HCBC under his jurisdicition. He explains that HCBC is limited to a fairly small pool of patients. They try to get most people get back to work, negotiating with their employers for accommodations or limited hours. Alternatively, they provide “life change counseling,” encouraging people whose capacities have drastically changed to “participate in finding decisions.” To be strong enough for survival, you need someone to push you, Flax tells me as he lightly shoves my shoulder.

Fields of sage on the road to Kasane

The experience was something like this

But what about those individuals who really can’t return to work? People who cannot stand on their own, who are listed by the Ministry of Health as unable to be employed, receive HCBC. Flax’s department provides a monthly food basket, refers folks to appropriate services across the government, and can help with schoolkid’s tuition, while the Ministry of Health provides rehab equipment.

While all good, it seems fairly limited. Certainly, counseling from social workers and referrals are valuable services, and as Flax says “food is medication,” but some people need more. There are bandages to change and medications to monitor. Regular medical check-ins can make a world of difference. For those needs, Flax says, they work with hospices and NGO’s that provide more substantial home based care. Hospice daycare programs give relief to caregivers, while the the hospice volunteer networks can provide an extra layer of day-to-day support.

Unfortunately, Flax acknowledges that these groups are full of “tired people,” overworked and dependent on scattered donations. There just aren’t enough resources right now for all that they might be able to do in communities. He hopes in the long run the GCC might be able to offer financial partnerships with these organizations, but right now it’s not the top priority.

Despite my wanderings, I still haven’t seen home based care in action, just a narrative of its potential. Luckily, my host in Gabs knows the chairperson of the Botswana Retired Nurses Society (BORNUS), one of the major NGOs providing Home Based Care. I’m invited to drop by for a chat and a few patient visits. And this time, I have a ride.

^{1. The Central Business District itself is a bit of a misnomer, other than Masa and a couple other buildings it’s untouched brush. One of those zoned spaces the market has not yet developed to the point of serving its purported purpose. ↩}

Two Hospices

Lions of Lion Park

Holy Cross Hospice opened in the mid-90s, through the Anglican Church and Rotary Club. It initially served as a support for children orphaned by the AIDs epidemic pre-ARV, but over time it has shifted to an adult day care center, offering caregivers relief and a space for psychosocial and medical support. They are working to establish an inpatient wing, but are struggling with funding. Pearl, the manager of the organization, has moved from a full time position to part time without cutting the amount of work she has to do. USAID was willing to fund childcare, but once the organization decided to focus on adults with life-limiting illness, that dried up. One Monday when I visited, the van that transports patients from their homes was broken and had been since last Thursday. They were using Pearl’s car (when she didn’t need it) for the patients with critical needs, but the rest were just stuck. I talked with one of the social workers. “We are just sitting here doing nothing,” she says. “Ah! These people,” she says, throwing her hands up in the air in a pantomime of new families discovering the gap between the promised and available care.

Case conferences continue without patients. The hope is some cash will appear to pay for repairs and everyone will get back to work. Conversations are surprisingly nonmedical. Symptoms are mentioned, but seemed secondary to psychosocial and spiritual concerns. For one woman, they discuss how to persuade her to receive care, something she refuses despite her family, physician and pastor’s arguments. For her, if God intends for her to die, she should do as little as possible to interfere. “God is sending different people to help” says Pearl, a little exasperated, “You can’t let yourself deteriorate.”

“Faith has become just the Prophet” says the chaplain, referring to the televangelist prophets who hold rallies around the country, performing prayer healing and offering God’s blessings for a low, but still surprisingly high, price.

One of the prophets

Next door to the conference room is an art therapy cabin. On the wall are tracings of hands, with each finger framing a picture reflecting an element of someone’s life. There’s one from a 30-year old woman living with AIDS, her right leg amputated and Karpis Sarcoma (KS) in the left. The thumb is a raging storm, the index finger simply stating “botlhoko,” or pain, the middle a pair of stick finger children playing with a ball, the ring finger a wedding ring, the final finger a cow, a sign of wealth and adulthood. Each shows a tension between the reality of the woman’s collapsing condition and her hopes for the future, a tension that might be impossible to draw out in traditional counseling. If Holy Cross can help reconcile her paradoxical position, or at least open her up to see it, the organization will have done a great service, regardless of the demedicalized emphasis. The maintenance of hope is one of those universal constants of caring for those with life-limiting illness.

I’m tremendously impressed with the work of Holy Cross, especially given the instability of their resources, but I’m at a bit of a loss on the formal medical care. Psychosocial care is critical for caring for the dying, but one also needs the tools of biomedicine to deal with more mundane types of pain. Botswana has universal coverage for its citizens, but it only recently began implementing a plan for palliative care. At this point, coverage is centered in the Princess Marina Hospital oncology ward. As there is one palliative physician for the country and only a few nurses, coverage is limited. Much of Holy Cross’s work is dedicated to education, explaining what palliative care is and what it can do. This challenge is made explicit in conversations about the resources dedicated to palliative care over other treatments. With so many people sick, why focus on those likely to die?

I go and look through the national archives at the Ministry of Health’s correspondence from the late 80s through the mid-90s, at the absolute peak of the AIDs crisis, before the availability of ARVs. There’s document after document discussing the need for prevention and the potential costs, but I don’t see any documents on what is being done for those already diagnosed.

I see the corners of the answer though. Talking with people around Gabs, most mention various community home based care outfits that popped up in the 90s, funded by the Ministry of Health. But it’s unclear the scope of care. Some talk about nurses providing daily care and check ups, some say it was simply a support to family caregivers. My reading suggests that this is an area still under negotiation and development, sorting out on what scale and in what style the government will provide palliative care. I’m hoping to shadow a couple groups in the next few weeks and get a sense for myself.

Visiting another hospice, Paebelong Hospice in Mogiditshane, I encounter something more familiar. They have an inpatient ward, with hospital beds and accessible bathrooms. Again, the organization is tied to a church, this time the Gaborone dioceses. Most of the nurses are nuns, many of whom have come from India. I talk with Sunila, the manager, about where I went and what I did. She’s from Darjeeling and Bihar, neither of which I visited to my chagrin. I ask her to compare Botswana and India. Botswana is calmer and there are more places with more resources, but “there’s more freedom in India.” Why did she come here? “We go where we’re needed.”

On our tour around the hospice, I see what she means about freedom. When Paebelong opened its inpatient ward, it was the first in the country. The government required that it meet the same licensing requirements as a hospital. Sunila points out a counseling room. That’s for meeting with doctors, she says, though of course they mostly meet patients at their bedsides “but we needed it for licensing.” Same for the ambulance I notice outside. For better or for worse, in India the regulations are much more flexible.

When I think of a hospice, an ambulance seems out of place, but Sunila tells me that families often want patients to be taken to the hospital at the end. They aren’t ready to let someone just die, or believe that the doctor will save them. It’s different than the palliative care I’ve encountered before, but I’m not sure how yet. I need to see the scale of the home based care to know how it fits in. Is it more like assistance, a supplement to community or familial caregivers already in place as it was in Kerala? Is it a total care system, providing for the majority of the patient’s daily needs? It seems to me that most people die at home, in the hands of a family caregiver, or in the hospital. The in-between medicalization of a hospice doesn’t fit into the traditional, community based medicine or the new biomedical tools that have appeared in Botswana over the last couple decades. Is this another case of medicine trying to occupy a role already met by societal structures, or an absence that needs to be rectified?

Welcome to Gabs

I have like 50 photos of this guy

Gaborone is on a plane, arid streets spread out in a horizontal sprawl. Houses in varying shades of brown and orange are fortresses: 6 foot concrete walls, topped with electric wires, metal gates with infrared sensors in front of the driveways. Most of the day the city feels strangely empty, especially after four months in a country where a neighborhood may have people than all of Botswana, but at 6 PM traffic is so bad one is lucky to cover 7 kilometers in 45 minutes. If you look in the Lonely Planet guide to Gabs it says “There aren’t many reasons to come here – it’s a world of government ministries, shopping malls and a seemingly endless urban sprawl, which is why most travellers either fly to Maun or cross overland elsewhere.” Maybe a little harsh, but when some friends went to the tourist office to ask what there is to do, the woman behind the desk said “Not much.”

There are habits I am having to unlearn. Americans in Botswana are considered “too energetic and rude” according to my host. Greetings are important, as is chewing the fat and generally taking a more lackadaiscal attitude towards life. I jump in forgetting hello all the time. At one point I was visiting a pay-to-use bathroom. I rush in, ask how much it is. The woman behind the counter is a little taken aback, says three pula. I slap it down, she slides it behind the glass and looks up with an over-the-top, mocking smile: “Good morning!” I’m chagrined, on my way out we chat for five minutes. Another time, I see a man outside a public bathroom ¹ asking people something as they walk past. Trained by Indian panhandlers, I say “no” as he mutters to me and stonewall him. Once inside, I discover none of the toilets have paper. I see him walking in as I walk out, a roll in his hand. He makes eye contact, gives a little smile, lifts up the roll. My instincts from four months in India aren’t working so well.

The flat layout of the city is built for cars, so the options available to me are either a combi, a van of 15 seats that runs in a set loop, or a cab. The combi routes are nominally online, but what and where they run seems to vary based on the availability of drivers. Plus, the driver’s play games of pool while they wait until the combi is completely filled before leaving the central hub, making it a tough method for someone on a tight schedule. A cab, on the other hand, will show up to a location somewhere between 5 minutes and an hour, and cost about ten times as much. So regardless of what one does, there’s a lot of waiting involved.

Generally good advice

This was nice for my first couple weeks here. Coming from India, I had learned to accommodate the constant presence of people, a guarded attitude towards interactions with strangers, but it had left me worn out. But this laidback attitude also filtered into project work. I accidentally arrived labor day weekend with a handful of phone numbers, but I found everyone’s schedules filled up by the short week. Delays and dropped phone calls and meetings canceled on short notice are the norm.

At one point I spent a day trying to contact a woman at a hospice who had “just stepped out,” when the hospice’s fax line kept cutting into the conversation, giving me flashbacks to the dial-up sound of my early childhood. Finally getting in touch with her secretary, I find she stepped out and didn’t come back. But once you do get ahold of someone and nail down a time, everyone is extremely gracious. Busy people make time out of their day, and do their best to set up connections down the line. Their pace may not be what I’m used to, but neither is the generosity.

What I take and publish from those conversations is a bit of a balancing act. I’ve always brushed off the description of the Watson as research. There’s no peer review in the process, I’m only evaluating myself. But here there’s the additional consideration that to do research requires a research permit, something I don’t have and don’t have time to acquire. As a sub-Saharan nation of 2 million people with a reputation for stability and relative wealth, it has attracted outsized international research attention. There’s a desire in the government to try to control the narrative published outside, and many communities are small enough that one article can be used to identify who made individual comments. For example, there is one palliative doctor for the country. It’s pretty easy to track things back to her without too much effort. So, I’m going to be careful in the subjects I explore and how I explore them to avoid getting anyone in trouble. This is part of my reasoning for not writing much in my first month here.

It’s also strange traveling in a country where English is regularly spoken after spending so long in spaces where it’s secondary at best. Don’t get me wrong, being an English speaker is a huge leg up anywhere in the world, but Botswana is the first space I’ve been in since Scotland where I can ask anyone a question and be sure I’ll get an answer. It changes my orientation to the place, in good ways and bad. Before I left, a friend gave me the book “Leaving Atocha Station.” The narrator travels to Spain to write a historical poem on a generous grant from a foundation. I would like to believe I’m less of a dirtbag than him, but there are plenty of sections that twist in my gut: “As we walked through the Reina Sofía I would offer up unconjugated sentences or sentence fragments in response to paintings that she then expanded and concatenated into penetrating observations about line and color, art and institutions, old world and new, or at least I imagined those expansions…Of course we engaged in our share of incidental talk, but our most intense and ostensibly intimate interactions were the effect of her imbuing my silences, the gaps out of which my Spanish was primarily composed, with tremendous intellectual and aesthetic force.” While he uses that ambiguity as a seduction method, I found the gap between language and understanding an impetus for analysis in India. Conversations failing to fall into predictable patterns forced reconsideration. In Botswana, the clarity and matter-of-factness tempts me to take interviews at face value. After so many encounters with this subject, I imagine I’ve heard it all.

The climb up to Mogonye Gorge

Another reason for my sloth is what I think of as the 2/3rd semester feeling, at the time when the initial excitement has faded but I’m not quite in the desperate rush to wrap things up at the end. Factor in the difficulty of exploring the country and the fact I was pickpocketed,² and the challenge of self-motivating begins to seem insurmountable.

But I kept going to meetings and writing things down and typing up notes and poking around and it turns out that there’s a lot here.³ I’m trying to pull this stuff together, find out the questions I want to explore for my last two months of the Watson, not fall victim to ennui and the illusion that after so much traveling, I’ve seen it all.

^{1.why are bathrooms the center of my cultural incompetency?↩}

^{2. Okay, the story in brief. I was out for a night with some new friends and then discovered that my wallet had disappeared. Reported to the police and hotel we were at. It was an interesting contrast, the anger I felt at people taking my wallet, and the kindness expressed by all the people who stopped their night out to see if we could find it. We didn’t, and because of another long and complicated story, I’ve been waiting for my bank cards for the last couple weeks. ↩}

^{3. Obviously. ↩}

So Be It

The view from Chondrashila

I just left India. At four months, it’s the most time I’ve been in a country outside of the US. So how to approach leaving? Because I’m nominally pursuing a “journey of self-discovery,” rather than just bumming around, I tend to think of my year in thematic chunks. Ireland offered a historio-philosophical framework, the Netherlands the position of medical autonomy within a political framework, France and Italy the tension between the macabre and the divine.

So where does India sit? There’s a terrible temptation to lean on clichés: A land of contradictions, “overwhelming.” I’m not averse to a good cliché, and they capture something of my time, but they recreate an exotic otherness. Indian friends who have lived in the US have also found it overwhelming and contradictory. Probably most places are if you don’t know the implicit rules. Strangeness is a universal cultural trait.

The confluence of Bhagirathi and Alaknanda

But in exploring India, I’m inevitably a part of and pushing against a legacy and present of Western imagination, from the boy’s adventure exoticness of Kipling’s Kim to bad Coldplay music videos. In particular, my focus on death and dying brought me into contact with the Western tourist on a spiritual quest. Often dreadlocked and hennaed to the gills, they talk about Eastern spirituality’s acceptance and openness in opposition to the West’s cloistered Christianity. When I would introduce my project, they exclaimed about how comfortable Indians are with death, or more broadly, with accepting life as it is.

Studying death for year means examining how we incorporate the inevitable end of life into our day to day. So despite my distaste for this orientalist attitude, I had to see where it comes from, what it might mean.

The Gateway to India and the Taj Hotel in Mumbai

The men on the ghats in Varanasi offered one vision.¹ One 24-year old guy attended school until he was 12, when his mother died. He left his village, down a way on the west side of the Ganga, to work odd jobs on the ghats, paying his sisters’ dowries and caring for his brothers. He had a sense of fatalism. Along for the ride.

I pushed him a bit, asking him his dreams. “To make people better off,” he says, but then acknowledges his plan is to keep on keeping on. One of the employees at my guest house, Manoj, had a similar attitude. You don’t know what’s going to happen next, so take your money and spend it. Maybe there’s a next life, but you won’t get this one again. For both of these men, and for other guys on the Ghats, this was the life they had, so be it.²

Scissor makers in Kolkata

But does this have some grounding in Hindu orthodoxy? Well, it depends, A guru who founded the Kautilya Society in Varanasi, Om, seemed to offer contradictory messages. The intentions behind our actions matter, our minds rightly construed affect the universe, but at the same time karma, in the sense of a divine interplay of action and reaction across our lives, is a convenient fiction. A child that dies from fever isn’t paying for a past life, he says, it’s dying from a fever.³

While I was at the Meenakshi Ashram in Madurai, the Swami offered a variation on the same theme. He described the Hindu ideal as that of a grandparent with their grandchild. They play with the child’s toys for the delight, but not with the expectation of a result. A good life, then, is in line with the men on the ghats. Live life, take pleasure in the experience, don’t expect anything. It’s an interesting contrast with Christianity’s personal God, invested in your decisions, commanding that you reshape rather than inhabit the world.

Mumbai

But Om and Swami-ji’s theory felt contradicted by the daily practices I saw on the streets. People stop in at temples to ask for intercession on all sorts of things. Sick people try prayer alongside antibiotics, and every morning I saw shopkeepers burning incense and offering prayers. So maybe for a spiritual figure, someone who seeks to separate themselves from worldly concerns, this observational and dispassionate approach works. But at the ashram, Swami-ji would go to Temple and participate in these rituals, and Om certainly seemed invested in the Kautilya Society’s work of preserving the ghats.

Om told me that where the the West wants to understand, India wants to experience. I’m a part of this paradigm. Trying to tease apart a holistic experience, find contradictions in life philosophies that were never meant to mimic an academic article. So what if I can’t capture the deeper meaning inside some essay. I should let it escape my grasp, let go, just sense. Perceive, don’t understand.

Part of the challenge was my frustration with the repetitiveness of my exploration. Conversations about my Watson project fell into a groove, with people asking me the same questions, or telling me the same phrase about learning to accept death. I wanted to seek out a conclusion so I could say something satisfying in response, something that moves us out of platitudes and sentimentality. It’s not a helpful way of approaching conversations, hinging on offering rather than receiving.

The final climb to Chondrashila

So to shake myself out of my funk, I embodied one more traveler stereotype and took a trip to the Himalayas in search of myself. I needed to do something different, take a break charting my own way and instead follow a set path. And I’ll be damned if it doesn’t kind of work. Leaving the chaos and human noise and cabs of cities for long, linear, strenuous mountain walks for hours every day, I’m able to just be, to stop trying to think about how I’m supposed to think about what I’m thinking about.

I woke up one misty morning in Chopta and crawl out of my tent. The sun hadn’t risen, but the clouds refracted the light out from below the horizon. I sat on a rock to finish a novel I was given at the start of this trip, way back in July: They Came Like Swallows by William Maxwell.⁴

Set during the Spanish Influenza epidemic of 1917, it follows a family in the lead up to and aftermath of the death of its matriarch, Elizabeth. After her death, her husband, James, a kind man who is at a loss of how to raise his children, is devastated, wandering sleepless for days. He plans to sell his house, let his son’s be raised by their Aunt. His life, it seems, has ended with his wife’s. But one night, he wanders out into the snow, lost in his thoughts about what it all means:

“’But to what purpose?’ he said aloud, and hearing the words, he lost their meaning and all connection with what had gone before. He knew only that there was frozen ground under his feet, and that the trees he saw were real and he could by moving out his path touch them. The snow dropping out of the sky did not turn when he turned or make any concession to his needs, but only to his existence. The snow fell on his shoulders and on the brim of his hat and it stayed there and melted…And knew suddenly that it was all a mistake…everything he had done and thought this day. He was alive, that was the trouble. He was caught up in his own living and breathing and there was no way possible for him to get out.”

It clicked then, and it clicked with things I had been told but hadn’t heard. My friend Nehmat recently lost her grandfather. Her family is Sikh and shares the cremation tradition. She told me about the visceral experience of setting fire to a loved one:

“…there’s just something so counter-intuitive and supremely uncomfortable about setting a person on fire. And the son of the deceased person has to do it. So I’ve watched my father pour ghee [clarified butter] over the funeral pyre and then take a stick with one end burning and light the wood/actual head of his parent…And at that point, you’re not dealing with a person anymore – the body of this human being that you love necessarily has to turn into an object in your mind for it to be somehow acceptable that it is burning in front of you. The smell is the other thing because the smell of burning ghee is also linked to cooking food, often comfort food, and all of that associational stuff gets very fucked up….The ritual is that family members go to collect the ashes the following morning. In the Sikh tradition, you’re supposed to pick the bones from the ashes and then take those to the river to immerse. I felt weird and sick looking at what was left of this whole entire person. But at the same time, it’s hard to visually connect a pile of ash to a human being, even though I know that that’s exactly what it is.”

Or this other passage from Amitava Kumar’s piece on returning home to India after his mother’s death:

“I thought of the priest telling me each time I completed a circle around the pyre that I was to put the fire into my mother’s mouth. I didn’t, or couldn’t. It wasn’t so much that I found it odd or appalling that such a custom should exist; instead, I remember being startled that no one had cared to warn me about it. But perhaps I shouldn’t have been. Death provided a normalizing context for everything that was being done. No act appeared outlandish because it had a place in the tradition, each Sanskrit verse carrying an intonation of centuries of practice. And if there was any doubt about the efficacy of sacred rituals, everywhere around us banal homilies were being offered to make death appear less strange or devastating. The bhajan that had been playing on the loudspeaker all afternoon was in praise of fire. Death, you think you have defeated us, but we sing the song of burning firewood. Even though it was tuneless, and even tasteless, the song turned cremation into a somewhat celebratory act. It struck me that the music disavowed its own macabre nature and made everything acceptable. And now, as the fire burned lower and there was visibly less to burn, I saw that everyone, myself included, had momentarily returned to a sense of the ordinary.”

This is acceptance of death stripped of cliché. The relief it brings in companionship with a deep heartache. It’s an acknowledgment of James’s revelation “ neither he nor anyone else had known that his life was going to be like this” or in Leonard Cohen’s darker mirror:

“Goodnight goodnight
My fallen star
I guess you’re right
You always are

I know you’re right
About the blues
You live some life
You’d never choose”

^{1. A methodological note: In India, conversations with strangers are a constant. I sat with a friend in an outdoor cafe who started a ten minute, fairly intimate sounding conversation in Hindi with a passerby. After the interloper left, my friend said to me “Would you believe I have no idea who that is?”}

^{So in some ways, conducting the informal interviews that are the bread and butter are the Watson are a breeze here. But asymmetries of wealth and perceived role shape everything. When I sat on the Varanasi ghats, my pasty pallor constantly pulls in young men. All of them have multiple hustles: Local tour guides, boat pilots, commissions from saree shops. Add in the language barrier, and our casual conversation becomes an exercise in repetition. It’s (almost) always friendly, a no taken almost as a given, but it isn’t really moving my project forward.↩}

^{2. I need to avoid pulling a Thomas Friedman here, extrapolating to a society based on a conversation with a cabbie. These are just a few guys, giving me their take. That’s valuable! They’re a part of this place, what they have to say reflects some of it. But it’s not representative or academically rigorous. It’s just what I took away from a conversation, or an image that stuck in my mind, rather than a take on “Indian society.” As though a country of a billion people with a 7000 year history and 22 officially recognized languages (and hundreds of local variations) could be described meaningfully by some 23-year old from Wisconsin after four months. ↩}

^{3. This is not the dominant viewpoint on karma, though it’s hard to say if there is a dominant view on karma. But in general, the notion of karma as physical accumulation of sin or blessing is wrongly put onto Hinduism. For Jain’s, karma is a physical object that a righteously spent life is spent reducing, while in Hinduisim it’s better thought of as a verb, the universe’s swing between action and reaction. ↩}

^{4. Spoiler alert, I guess, though the work of the book isn’t in its twisty plotting. ↩}

This Degenerate Age

A man comes up to me on the burning ghats. “Burning is learning” he says, suggesting a spot to stand and watch, “cremation is education.” Don’t take photos, he warns, there was a fight here just the other day with some rude tourists.¹ He tells me he works on the ghats as a dom, wants to share his culture with me. He doesn’t want money, no charge, no charge, but people who come here to die are left in a hospice over there–he waves his hand in some indeterminate direction–and they need money for food and a pyre. If I just give him a small donation, he’ll take care of them, he promises. He’s insistent, strangely pushy for someone who thinks of himself as a charitable, cultural ambassador for a sacred space. I relent, hand over a few rupees. He waits for more. Desperate to be alone with my own thoughts, I give in. He leaves, but returns a little later to tell me the spot I’m sitting in, surrounded by a ring of empty space, is reserved for families.

Something suggests this isn’t totally above board.

Some of the wood for the cremation ghats

The advice from other people on the ghats is to avoid giving any cash. It’s unlikely he’s a dom, or if he is, he’s definitely not employed as a guide. But there’s no sense of condemnation, the way one might imagine if a door to door salesman dropped by a visitation.

I sit and watch and try to understand. The corpses are burned in all their regalia, dressed to impress for their journey to the next life. But, though perhaps the true essence of the jewelry and gold may move on, in a more mundane sense there are pickings left over. A man leans on his friend’s shoulder, doing a little soft shoe in the ash-filled water. People look like they’re panning for gold, prospectors who have hit a solid vein.

Doms negotiate their wages in public, with a certain flair.² Johnathan Parry describes the negotiations:

“But whichever Dom has rights on that is the raja of the cremation ground, and the mourners are never allowed to forget it. During the negotiations over his ‘tax’, he makes a point of touching the mourners, and treats them with the haughty disdain an Untouchable might normally experience at their hands. Lounging on a bolster, he addresses the mourners with the disrespectful second person singular pronoun tu, while they use the polite ap and call him ‘elder brother’ or ‘Chaudhuri (headman) Sahib.’”

He then quotes a particularly colorful argument:

“Your respected father won’t die again and again. You won’t perform his last rights time after time. Your father raised you, educated you. Now you must give with an open heart. You have brought him to Kashi to burn. Do the work happily. You will die also….So how did he die? Did you poison him…You say you are poor! You want to teach me how to fuck? If you can’t give more than that, then go. Take your corpse away, and take your money too.”

But while negotiations with families are fierce, it would be a mistake to call it a market. The right to sift for jewelry (sona) or receive the lion’s share of the fee is given to each dom on a scheduled day. The rights are heritable and unequally distributed, enforced through professional bonds and old record books, with the male children splitting their father’s position in the rota after he dies. The allocation changes depending on the deceased’s ethnicity, whether they are South Indian or North Indian or Bengali. Similar temporal arrangements are made for the Mahabrahmans (funeral priests), who stand in for the deceased’s vengeful ghost and must be appeased. The supply of funeral labor is essentially a cartel. So, while hustling a clueless foreigner is not ritually condoned like the dom and the Mahabrahman³, it isn’t as untoward as it seems at first.

Or if it is inappropriate, it’s also expected. According to the Hindu faith, we are living in the Kali Yuga, the fourth and most degenerate age of the universe, a time when people are faithless and cynical in their dealings and material matters have replaced spiritual enlightenment. In dark times like these, the world is always on the edge of chaos, and some semblance of order must be retained to avoid a war of all against all. Parry observes “Hindus often appear to see themselves as engaged in an endless battle against impeding chaos and disintegration, of which the ever-present danger of a disintegration and degeneration of the actor’s own person is the most immediate and apprehensible manifestation.” So, “the rota system is quite explicitly represented as a device to eliminate conflict and competition between members of the same occupational group” as an assurance of some form of order in a world without trust. There’s no way you can trust the family of the deceased to treat you fairly, but you can at least insure your fellow doms will have to follow some rules.

In comparison, when I talked with funeral directors in Ireland, there was hope for regulation to protect grieving families from greedy funeral directors, or, more cynically, to protect the reputation as an industry. But there, the focus was on controlling market forces, dealing with an information asymmetry between the clueless family and the upselling director. In India, the information asymmetry is a given, the dom feeling out what the family can pay and trying to maximize his haul. But a full on market has to be avoided at all costs. Without rules to govern behavior, the theory goes, one’s very self is at risk. Identity and the soul are contingent on ordered systems.

Or so it seems to me. In writing this, I am aware of how much I’m relying on second-hand accounts, like Parry’s 20 year old book. I don’t know the language, I didn’t have a translator. I felt distant from the specific, personal narratives that I feel form the heart of my work. I found those unusually hard to get for reasons I’ll go into another time, but there’s so much happening at the ghats, I feel it’s inevitable as an outsider to misunderstand and mischaracterize it.

^{1. Every day I visit it seems like I’d just missed a brawl.↩}

^{2. An important piece of context: Doms were previously known as Untouchables, the most impure of the impure. While legally caste discrimination is no longer permitted, there is a taboo around interacting with them. The aggressiveness in their negotiations is partly a reflection of the inversion of power brought about by death. The lowest caste has incredible authority in the negotiations, regardless of the status of the deceased, and it’s a chance to exact some revenge. ↩}

^{3. The comments from Indians on the ghats labeled these scammers as drunks or drug addicts.↩}

In the Middle

On the roof kids just flexing

My initial encounter with Varanasi gave no indication of its spiritual significance. As I got off my train, it seemed like most other North Indian cities. Wide, sidewalk-less streets, auto-rickshaw drivers jockeying to give me a ride and, incidentally, tell me about their cousin that owns a guesthouse. But as I got close to the Ganga River at the heart of the city, narrow footpaths split off from the main roads, little capillaries off the main artery. These lead into the medieval quarter, tall buildings flanking narrow alleyways. It feels similar to Genoa, but whereas Genoa’s medieval quarter was a curiosity, a tourist sideshow or a bougie farmer’s market rather than a core location, in Varanasi the streets are lived-in. Tourist knick-knacks and lassi shops sit next to general stores and temple offerings. Cows create pedestrian traffic jams as they chew their cud. I swear the winding paths move when you’re not looking. Turns I expect to lead me to the river take me around past another aisle of paan stalls.

But I eventually find my way to the Ghats, stepping through an archway, out of the shaded streets into the blinding light. As my eyes adjust, I see stone steps leading to the Ganga. Irregular plateaus create a promenade between the river and the city. I expected an austere space, a cross between a church and a graveyard. But that isn’t right. It’s like central park, or a less pretentious Seine riverbank. India doesn’t go for the sitting around in cafes. In nearly empty restaurants, waiters will give you an evil eye for chatting after eating. But here, people lay around chatting, or sitting in silence. People (and cattle and dog) watching is the pastime of choice. After the frenetic pace of the medieval corridor, the ghats are otherworldly. Time moves slow, drawn out by the lingering sun. A whole eon passes each day, carried on golden light.

A Yogi I interviewed explained how the ghats tell the story of the soul: death on either side and life in the middle. Manikarnika Ghat and Harishchandra Ghat are the cremation ghats to the north and south respectively, but in between there’s chai drinking and card playing and small boys playing cricket, soldiers bathing next to Delhi bankers, dreadlocked holy men getting in water fights with little girls in the Ganga’s purifying, polluted water.

In Hinduism, to die in Varanasi (also called Kashi) is to be freed from the cycle of death and rebirth, to achieve moksha (also translated as mukti) or liberation. Theologian Diana Eck cites a song from the Puranic mahatmyas:¹

Here why should a man dwell in a solitary place

And what is the use of turning from the pleasures of senses

And what is the use of practicing yoga or sacrificing to the gods

For without these one gets mukti easily in Kashi

The city is the domain of the god Shiva, one of the core trinity of Hindu gods, and it is he who whispers the mantra of liberation in people’s ear as they die. The Ganga flows through the center. Holy and purifying everywhere, it is particular powerful in this city, as it flows from south to north, matching the idealized flow of energies from the hips to the head. Bathing in the Ganga is supposed to rid your soul of sins from past lives. It’s a deity in its own right.² There’s another piece to be written about the doctrine around Varanasi, but the narrative is so dense I know I couldn’t do it justice.³

Also managed to make it to Holi

I see two officers putting on their uniforms after a swim in the Ganga, returning to their posts. Is it for the spiritual cleansing or a cool dip in the hot afternoon? Does it matter? Conversations on the ghats flow back and forth between one’s karma and the Austrailia vs. India test match. For once, when I bring up my project, everyone acts unsurprised. The boundaries between the divine and profane blur, though my feeling is that no one here would see a line.

The burning ghats push the ritual into a public view, far more public than the Christian funeral, cloistered as it is in the chapel and graveyard. Nearly a hundred corpses flow to Manikarnika Ghat every day and night, carried by the male members of the family who chant “Rama nama satya hai” (The name of Rama is the truth). The dead are wrapped in orange sheets with shining silver trim and garlanded with marigolds. Arriving on the burning ghat, I sees piles of wood fifteen feet high, weighed out with a metal balance. The dom builds up a pyre, tucking the dead into a bed of wood and straw. The eldest son, his head shaved other than a small patch of hair in the back, lights the pyre with a coal from the eternal flame. The wood catches quick, helped along by ghee and the straw, as the air above shimmers from the heat.

Families sit on the steps and watch the burning while a shop sells tobacco and crisps. The space is solemn but not heavy. Despite spending more time in graveyards in the last eight months than most well-balanced people, the burning ghats feel profoundly unfamiliar. Sure, the Necropolis in Glasgow was a nice spot for a picnic but you wouldn’t see a charred leg at the same time. Like the city as a whole, the cremation ghats lend themselves to snapshot descriptions, a whole that overwhelms their parts. They’re a strange mix of the mundane and profound.

I feel understanding on the tip of my tongue, but at every moment of clarity I become more aware of the deep waters I skim across. When I was at the Ashram, I spoke words without meaning. Here I feel meaning without the words. Around the corner, doms play cards and gossip. Their voices echo over the corpses.

^{1. Sort of a collection of travelogues, but with some divine weight.↩}

^{2. It is tempting to treat the Hindu Gods as akin to the Greek Gods, as in the God of Messengers or God of War. While there are some deities that have these clearly delineated roles, different sects assign different qualities to different deities. So in some Shiva is confined to the role of transformation and flux, while in others he emerges supreme above all other Gods. Another example of this is Rama, the protagonist of the titular Ramayana, who in some places is an incarnation of Vishnu and in others a virtuous and blessed human. In fact, this tendency makes it hard to write about Hinduism as a generalized religious category at all. As far as I can tell, it’s not like Christianity where different sects argue over who speaks the one true word of God. Each version is true in its own way, or is an aspect of truth, or is the tradition of a particular group. It’s a shift in perspective that I’m certain I’m misunderstanding and mischaracterizing. The point is, any statement made here is based on one interview or one book. Ask the guy on the next ghat and they’d say something else. ↩}

^{3. It has been written by a lot of folks more qualified than me. The first chapter of Johnathan Parry’s Death in Barnaras is a good pick or, if you’re really into it, Diana Eck’s Banaras: City of Light. ↩}