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.
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?
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.
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.
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. ↩
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.
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 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
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.
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.
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:
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. ↩
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.
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.↩
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.2There’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
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. ↩
My Grandmother passed away recently. I’m not going to dwell on the personal and familial ramifications here. I have a journal for that. But it has brought up a long percolating thought. What do we do about our fear of death?
It’s a good place to think about this. For the last week, I’ve been in Varanasi, the holiest site of Hinduism, a place so infused with divine grace that to die here is to be freed from the cycle of death and rebirth. The environment, and the introduction of my work, prompts conversations along the Ganga about death and its place in our lives. These conversations, especially with other foreigners, circle around the same theme: “we should not fear death.” Moreover, the answer to that fear is simple: The Indian’s have figured it out.
Setting aside the problems of imagining there to be a single Indian approach, in a country of immense religious diversity, where even the focus point of this analysis, Hinduism, is notable for the flexibility of its doctrine, I think it’s worth exploring why we are so afraid of our fear of death. I don’t mean to imply it’s just in Varanasi. Over and over, from palliative activists and priests and funeral directors, I have heard that Western culture is scared of death, which is why we’re so bad at it. And often in the conversation there is a presumption that in the East, the religious realm has an answer we lost, or that just never developed in the West.
I hate to be a spoilsport, but after seeing how families react from the US to India, the anticipated loss of a loved one seems to tear at hearts no matter the geography.1
But I don’t think people are talking about a concrete fear of death in those conversations by the Ganga. They mean an abstracted, distant death. For most of us, our own death is a ticking clock. It’s a sense of closing doors, paths not taken, time slip slipping away. YOLO. If we see life as an accumulation of discrete, but replicable experiences–having a child, visiting a city, making that disastrous career move–reincarnation is a way out. A yogi said as much to me, that the rush and hurry of the West was a response to our single lives, whereas in India “we can just do it next time.”
But you can’t. Life isn’t lived that way. It’s not “a child,” it’s my child, my mom, my job, my life. Death is the loss of the specific, to the dying and to the bereaved. The dying are faced with a transformation or an elimination beyond their understanding, an erasure of the world of certainties. The bereaved are left with a hole that can be patched over but never filled. Why shouldn’t we fear the unknown, or loss, or our own fleetingness?
When my Grandmother died, I was scared. The constant subconscious sense of distance and unfamiliarity lurched into acute homesickness. I thought about how life contains this violence, that in the end everyone I know and love will leave me, unless I leave them first.
Religions offer ways of understanding these feelings, affirm our deep sense that this can’t be it. But that sense is dialectical, feeling responding to feeling. To reduce a religion to an opiate, or even to go further and call it a solution to the problem of being alive, is to ignore the way faith brings our fears to the fore, even as it offers tools to grapple with our terror.
So when I’m asked if this year is making me more comfortable with death, I respond with a firm no. It’s not about comfort. It’s about facing grief and fear head on, not trying to hide from it in either the biomedical myth that death can be fought off or the hope that there is some simple truth halfway around the world.
1. I think there’s also a commentary that I’m not making here about how Westerners imagine “Eastern” religion as the source of ancient wisdom and how this skates over the reality of other people’s emotional and spiritual depths. My (admittedly limited) experience talking to Indian people here about their thoughts on death suggests that most people don’t think their faith gives them an easy answer, even if it is a reassurance and a comfort. A simple narrative for the other, whether positive or negative, reduces their humanity ↩
For much of my childhood, I spent two weeks each summer at a Presbyterian retreat in New Mexico called Ghost Ranch. There, my mom taught classes with titles like “Learning to love the questions.” Red rocks and arid landscapes were fused in my mind with spiritual spaces. The Meenakshi Ashram taps into this sense memory. Warm ochre dust covers everything, matching the color of the tarps covering the main hall and dorms. Purple and orange flowers, intermingled with crimson leaved bushes, line the meandering paths. To the northwest is garden that grows food, aligning with the Yogic dietary tradition. Rock walls beneath shade trees offer space for conversation or reading. I stay in one of the dorms, sharing my space with thirty or forty other visitors. The whole compound is compact and beautiful.
5:30 AM: In the dark we walk to the main hall for satsang at six. Here, we spend around twenty-five minutes in meditation, followed by chanting. I try to empty my mind, focus on my breathing and some mantra, but keeping my eyes closed and mind turned inward is impossible when the sun is rising and bathing everything in golden light. I never found sitting still a helpful way to clear my mind. Some days we go for meditation walks instead. There I am able to just take in the world, quieting the constant mental recitation of tasks.
After the mediation and chants, the Swami, dressed in orange, reads a short passage from one of the gurus and then riffs on it. He laughs often, mostly at his own jokes, but it’s infectious, opening up his face to a bright smile. He is fond of extended metaphors, which tend to move around some point rather than moving towards it. Sometimes it’s on the subtle relationship between karma and the mind, but usually he just wants us to not skip satsang.
7:30 AM: We break for tea, followed by yoga asanas at eight. Here I have my real guru, the asana instructor. He has a large oval face, eyes bright, typically with a smile. Vowels are extended, sung at the same note every time. “Inh-aaaaaale…exh-aaaaaale” he intones, a hypnotic voice that reaches deep into the subconscious. “No jumping” he informs us when we’re overambitious in attempting a handstand. “we need the floor for the next class.”
The session opens with three “Om’s” followed by a short prayer. The first ten minutes of the class are dedicated to breathing exercises, beginning with three sets of Kapalabhati, a series of rapid exhalations “to clear toxins” interspersed with breath retention. This is followed by Anuloma Viloma, where we close alternate nostrils to balance our prana, or life force, between the right side, representing the sun, heat, and the masculine, and the left, for the moon, cool, and the feminine. Pranayama, loosely translated as breath control, is considered a critical aspect of maintaining spiritual balance and discipline. I struggle with the spiritual/body linkages, but on days where I just want to skip yoga, I know that after these exercises I always felt prepared.
We move into sun salutations to warm up our muscles and then contort our bodies in all sorts of ways for around 100 minutes. After a week, I was able to touch my toes for the first time in my life. Each session ends with relaxation. As we lay in Savasana, the instructor tells us to tense our legs, then hips, then lower back, up through the body until we “make a lemony face…squeeeeze, eyes open, mouth open, tongue open.” Then we visualize each body part as he tells us to “re-laaaaaaax.”
10:00 AM: Our first meal of the day. Food is served on metal trays as we sit on the floor and use our hands as utensils. It’s a satvic diet, vegetarian with occasional milk and minimalist spices, no garlic or onion. These foods are supposed to focus the spiritual aspects of the self, reducing our libidos and focusing our minds. After no regular exercise outside of lugging my pack around and a lot of unhealthy eating, there’s a euphoric effect just from four hours of yoga a day and food that isn’t based around butter and carbs.1
11:00 AM: Karma yoga. We reduce our ego by doing chores. That beautiful dust gets into everything, so I spend my time sweeping and mopping out the yoga hall. I don’t know if it affected my ego. Mostly it seemed like it cut down on labor costs.
2:00 PM: Lecture, or so it is called. In truth, it’s more a question and answer session, or given Swami’s tendency towards distraction, a question and meander. For someone hoping to understand more, this is frustrating. On the 24th, there is Maha Shivratri, a festival celebrating the Hindu god Shiva. Swami meandered through an unrelated myth until arriving at a story about scientific observation of the “energy body.” I’m frustrated, I feel there should be some clear reason why people stayed up the whole night chanting. Swami is not a great listener and the gift of gab, so he’ll tend to misinterpret questions and talk a mile. It doesn’t feel like a back and forth. When we ask for specifics about symbolism or narrative or just what we are singing at satsang, Swami defers, saying that understanding isn’t the point or that all of these things are a part of yoga and just must be done. And I’m unsure how to feel about that.
Some if it is a difference in approach. The core of Sivananda yoga practice is “an ounce of practice is worth tons of theory.” Spiritual refinement comes not from intellectual understanding but bodily discipline. It’s why yoga is not a form of exercise, but a spiritual practice, why we do it for four hours a day. My asana instructor moves me into positions where I can focus on my body, creating a space for mediation. In improving my body’s ability to comply with ritualized postures, I in turn improve my ability to reflect on myself. This task aligns with Swami’s description of the goals of Hinduism. In his telling, Western Judeo-Christian systems pursue of objective perfection, an external orientation, while Hinduism emphasizes subjective perfection of your own self and mind. Yoga, diet, chores, meditation, all of these are part of our refinement.
It comes off as lessons in mindfulness, focusing on the interweaving of our bodily and mental state, processes of individual development. But then the Swami makes a move that puts my personal refinement into a cosmic context, transforming this development into spiritual meaning. The Swami emphasized over and over again that there’s a reason for everything, a relationship between our thoughts and the universe. Our sense of ourselves is a sense of God. He talks about his nonviolent nature, and how the universe conspires to turn away conflicts, going to so far as to cause a man to have a heart attack so that the Swami would not have to fight him. Proper thinking leads to proper results
At the same time, when I try to put the model into words, describing the process as trying to recognize what is in your nature, the Swami pushes back: “You try to think too much.” Guilty as charged. My parents are a research physicist and a Presbyterian minister cum sociology professor. I grew up in a household where intellectual analysis was at the dinner table, and our spiritual tradition focused on the exegesis of a text. Swami’s lectures don’t give me those moments of clarity I find in a piece by Christian Wiman or MarilynRobinson or a good sermon, and while I can be lost in the chanting, it lacks the moral force of the symbolism I am familiar with or the hymns I know.
4:00 PM: Second set of asanas. Perhaps the problem lies with what I define as spiritual. At the Ashram, I just feel good. Every time after I finish the asanas, I feel my mind and body slip away as I lay on my yoga mat. The embodying and physicalness, the space that invites release and catharsis, these are things every faith should offer. Perhaps it is a failure of my understanding that the Christianity of my childhood did not focus on that bodily experience, and that I assume spirituality must involve theological puzzles, questions to turn over in my mind.
6:00 PM: Dinner. Smaller than brunch, but just as delicious.
8:00 PM: The evening satsang session. Each satsang closes on the Arati, where we sing the praises of important spiritual figures: Shiva, the gurus who founded Sivananda. Thrown in at the end are Moses, Jesus, Mohammad. In one of our lectures the Swami says “all religions are the same.” And that’s where it clicks, why I need more knowledge, some sense of explicit meaning behind the mysterious symbolism. Because I don’t agree. Certainly, all religions try to meet the same sort of human needs, the same problems of what is meaningful in our lives. But they have drastically different approaches.
For example, I hear someone quote the opening of the Gospel of John: “In the beginning was the Word, and the Word was with God, and the Word was God.” But they add one more thing “and the word was Om.” That’s not how it works. Christians have puzzled over that verse, often arguing it is an assertion of Christ’s nature as the human incarnation of the divine. It introduces the mystery of the Gospels. What does it mean for God to become human, to live and die as we do?
The nature of Om is a separate mystery, tied no to the miracle of divinity in a man, but the essence that makes up all things. I can’t claim to know much about it. But I would like to! We are presented with “Om” as an open concept, one that can fit any box, but are at the same time told by the Swami there are right and wrong answers. When the Swami shies away from giving specifics, it doesn’t feel like it’s opening up a spirituality for everyone. It feels like I am being subtly shunted down a specific path. This isn’t a small gloss on the human relationship to the divine, it’s a change in the meaning of that orientation. If my research has taught me anything, the meanings we develop are at the heart of how we approach our lives, and we need the space to know and explore those meanings in an honest way.
To be clear, this religious encounter is very particular, and is far from the experience families have of the Hindu faith. The Sivananda organization is geared toward outside visitors. Classes are taught in English, and the organization has centers all over the world. So some of the mishmash is an indication they want to be accessible to all comers, to offer a “spiritual” experience anyone can get a purchase on.
I’m not interested in a generic spirituality, either for myself or for the Watson. I think there’s a modern tendency to think that a religion that tells us how we should be and what we should do is dangerous, a holdover from a time when kings were tied to God. Of course organized religion has been a part of horrific cruelty throughout history. Faith taken only as dogma, without any sort of doubt or criticism or awareness, is dangerous. But if religion doesn’t inform how we are in the world, doesn’t push us to act towards one another in some way, what does it do?
Anyway, none of this is really about my project, is ti? The time at the ashram does feel like a kind of failure as far as my project is concerned. But I did have one critical conversation that opened up a new way of thinking about death. Not with the Swami or any of the spiritual leadership. Instead I talked with my karma yoga boss, a woman about my age whose name I failed to write down.
Like most people, she is taken aback by my odd hobby. But after thinking for a while, she talks about reincarnation. She had arrived to the ashram viewing life as the end, and that scared her. “I’m very emotional,” she says. When people leave her social circle, it takes a long time to get over the loss. Talking with the Swami, she realized “we are all on our own journey.”
This isn’t the Westernized “may we meet again in another life.” That view comes out of the Christian conception of heaven. My sense from the ashram is the move towards enlightenment means abandoning the desire to return to those one has lost. Oneness with brahman makes such considerations meaningless. Often we postulate “Eastern” philosophies as collective in opposition to the individualistic West, but the Hindu spiritual journey involves an interior personal focus, a detachment from the actions of others, while the Calvinist understanding emphasizes acts within a society. As the Swami often said, it’s the why, not the what, in yogic philosophy.
Critically, this woman does not take on the reincarnation belief as an easy comfort. From a choose-your-own spirituality approach, she should seek out a practice that allows for a reunion with her loved ones, something to anticipate. But that’s not how religion works. We may have a distaste for dogma, but to have faith is to leap beyond personal preference to trust in a recorded, divine wisdom. And because it insists on narrowness, it challenges how we are in the world, for good and for ill. To open the tent to everything is to belittle the power of theology to push ourselves.
I’m traveling to Varanasi next, a place where death and dying is in the water. Despite my qualifications and hesitancy about the Meenakshi Ashram, it did give me a partial introduction into Hinduism. As an outsider, I am always navigating between accessibility and authenticity. Perhaps a city so steeped in spiritual significance, a pilgrimage spot for all Hindus, can give me a different lens than a yoga vacation. Consider everything above preliminary.
1. A central aspect of my experience was my first encounter with full on traveler’s diarrhea, so the first two days of my time at the ashram were spent either in the bathroom or passing in and out of sleep. It may seem like exaggeration, but the bliss I felt eating some lightly spiced rice after two days without food felt divine. Likewise returning to the asanas brought the joy of a functional body. Deprivation brings out the smallest joys and transforms them. People describe fasting as a reset for the metabolism and the spirit. I imagine joining the sense of relief of a return to vitality combined with the satisfaction of self-control gives a depth to the experience that can’t be found in the randomness of illness. Also, I lost five pounds! ↩
I arrive at Pallium under the twin hazes of newfound allergies and tropical heat. Perhaps because I struggle to focus, all I see for my first few days are slow paced rounds that lead to conversations about symptom management, a groggy version of a US palliative ward. I’m told it takes a couple weeks to get what’s going on here.
Pallium is a palliative clinic in Trivanthapuram, the capital city of the Indian state of Kerala. Its chairman and beating heart is Dr. Rajagopal, an anesthesiologist who came to palliative care after seeing how it could relieve patient suffering. The clinic has an inpatient wing, a halfway home, and a set of 16 volunteer link centers that compose the geographic map of its homecare team. The organization is also tied to advocacy and education around palliative care in India.
I spend my first few days trying to find my feet. I had hoped to fade into the background and watch, but it is clear that won’t work. First off, I don’t speak Malayalam, the main language in Kerala, so while I can watch for body language, most of my understanding comes through translations, abbreviated because obf time and filtered through the physicians. More importantly, there is some confusion about my role. I’m visiting at the same time as an attending palliative physician and her Fellow from the University of Iowa and a fourth year medical student from Mount Sinai. While I lack any medical skills, it’s assumed I will offer guidance and clinical support. It creates an outsized Hawthorne effect, and not just from the clinicians.
This was apparent on my very first day, we visit a woman with post-polio syndrome that left her legs paralyzed. She lives in a two room house with her mother who is blind. The bathroom is a squatting toilet short walk away down an unpaved road, shared among the community. An architect joins us. She is hoping to pave the road leading to the communal toilet and install a European toilet, so that the woman could use a wheelchair to toilet herself. The woman survives on a government pension for her disability, which she only got when her case was in the local paper.
Afterward, we hear from another physician how the presence of international visitors could turn the community against the woman. It is assumed that we visited to give her money, and the community has already started to resent the woman and her mother for the media coverage and her pension. “Without the community, they have nothing,” the physician tells us. The neighborhood helps out with many of the small things the woman needs, and given that her ability to prepare food relies on her elderly mother’s capacity, that need is only going to grow. It’s disconcerting to realize how my presence moves me from observer to participant, and how that movement weighs on their relationships. In less dramatic terms, it means everything I understand must be understood through how I am read, just as I try to be aware of how my background influences my reading. In the immediate though, there’s a new rule: only one international visitor on each home visit.
At the same time, this interaction prompts me towards a specific question. Why is the community so critical? How does it play into medical care? Of course community matters in America, but I can’t recall a time where someone’s survival depended on such a network. Or at least, I can’t remember a time when I heard physicians discussing the community network in a clinical context. I’m told that I should talk to Sarath, the social worker, if I want to know more.
Sarath is young, almost baby-faced. In conversation he seems attentive and aware, with a constant quiet smile as though he’s anticipated what you’ll say next. He’s easy to talk to. Sarath has only worked with Pallium for the last one and half years. Before, he worked with an HIV/AIDS advocacy program, and before that, he studied chemistry at university. This sort of liberal arts transition seems to be rare in India, so I ask about it. “I fell out of love with chemistry.” he says. For him, the joy of the work is in listening to people’s problems, the fact that, “I [the patient] have a problem, and I share it with you.” That’s what makes it meaningful. For each patient, he writes a psychosocial evaluation, based on interviews with patients and their families, which amounts to a case history, an informal financial audit, and the family gossip. He creates a genotype, laying out a family tree in circles and boxes, diagramming who are the caretakers, who is absent, who has passed away.
Most of Pallium’s patients can’t live independently. Many are paraplegic, cancer ridden, or with other serious chronic conditions. But Kerala has few places where they can go, no nursing home or assisted living equivalents. Many people don’t have the money or insurance that could pay for them even if they did exist. The social worker’s map of who is involved with care is the registry of what care the person can get, who they can call. And it’s not just biomedical and it’s not just for the patient. The psycho-socio-spiritual stress is an element of the care for everyone in the network, and part of Sarath’s job is to know and build connections within the family.
She asked me to do a photoshoot
I sit in on one of Sarath’s meetings, with a husband whose wife is unable to sleep, tossing and turning for two straight weeks. He discovers their social network is dissimilar from the Indian norm: no children, small family group. More so than the usual, the husband and wife are reliant on one another. The husband seems calm, his eyes shining beneath bushy eyebrows, thinning hair still more pepper than salt. He describes his wife’s medical history quickly in Malayalam, which I find out as I skim over Sarath’s notes. I have trouble focusing, but it seems like his composure is maintained throughout. A few times he seems frustrated, but with an insomniac wife, whose manic eyes dart around the room looking for any relief, how could any empathetic spouse not feel frustrated?
After the talk, Sarath and I debrief. “He says he’s coping well, but I guess not,” Sarath says. I nod on the principle that I have no idea how one could could cope well. “He knows it’s her last lap around,” Sarith continues, “A few times he almost started crying.”
I had not noticed the tears. Maybe because he was male and I didn’t expect it, or I wasn’t paying attention, or Sarath’s experience let him see things I missed. When I think about it later, I realize it reminds me of how physicians diagnose. There are subtle symptoms that suggest possible explanations, some that can only be picked up with a trained eye. But it requires an emotional sense and careful awareness of other people, without the crutch of scientific measurements and tests. And in the case where the caregiver determines the quality of the care, it’s at least as important. Here, the absence of close family places the total burden on the husband. He has to come to terms with his wife leaving him while providing for all of her needs. The care doesn’t stop at the patient. The caregiver needs to be relieved of their suffering too. Sarath plans to call their niece to see if she can help out. I suggest maybe calling their friends. He says that idea hadn’t occurred to him, that’s “not really what we do in India.” It’s the first time one of my questions surprised him.
That afternoon, I sit off to the side writing in my notebook. It’s incredibly hot. The power has been cutting in and out all day, with a brief pause as while the backup generator cuts in. The fans spinning overhead keep a constant buzz of electronic motors and rushing air. In this part of the hospital, the ward is open, separated by turquoise curtains made of thin plastic that the fans whip around. I hear someone wailing. A man with mouth cancer who had lasted two weeks past the single day a doctor had given him, has just died. His wife who had been unable to accept the trajectory now has to face his passing. She is inconsolable. The fans do nothing to mask her crying.
After a while, there’s a discussion of how to pull the wife away so the staff can prepare the body to leave. The mother of a patient with severe cerebral palsy gently holds her hand and guides into a room. She sits with the wife, giving her space to grieve for her husband. The body is wheeled out on a thin gurney, the man’s face out of the sheet, indiscernible beneath the bandages covering his tumors. The wife follows, carrying the things she brought with her, the turquoise curtains billowing.
Pallium’s work isn’t done. Sarath or another social worker will reach out to provide bereavement support, checking in on their grief. Some of that processing happens collectively. Sarath invites me to sit in on a bereavement session, where a group who have lost family share in their experience. Much is in Malayalam, but as each member of the group must introduce themselves, I go up and try to explain the strange reason I’m here. Dr. Rajagopal translates. Something about me provokes a laugh. That seems fair.
Dr. Raj and Sarath leave Susan, the palliative fellow from Iowa, and me in the hands of the group. They close the session with some songs. We start with “We Shall Overcome,” a song so caught up in a particular political moment in my country that I had failed to notice how it captures surviving more intimate pain. They call us up to sing, and we stumble our way through, with our efforts falling apart at the Hindi verse. We are told the event closes with the singing of the Song of the Republic. They ask us to sing some song for our nation’s independence. Neither of us feel completely comfortable jumping into the Star Spangled Banner, partly for its range and partly for fear we’ll somehow forget the words. They laugh at us, but find an alternate: Edelweiss. It’s a blessing for both our homelands. “America needs it,” one woman says solemnly.
At last we finish with laughter yoga. We hold hands and flip them up in the air, letting out a loud “Ha ha ha” as we go. Most people seem to leave with a smile.
Dr. Rajagopal is receiving an award tonight in honor of T. N. Gopakumar, a Kerala journalist notable for his emphasis on reporting on the lives of regular people. His speech is in Malayalam, but his delivery has the sense of a quieter Enjolras, similarly lit by a revolutionary spirit and a sense of justice. There’s a reason for this sentiment. 35,000 people committed suicide in Kerala last year for health related reasons. Medications like morphine are underused or inaccessible, leaving people in incredible pain. Even as the legal restrictions loosened, there’s still aversion to its use because of misplaced fears of dependency and respiratory depression. Dr. Rajagopal is in this fight, working to set up palliative clinics and pain free hospitals around India, educating other clinicians on the medications use, lobbying to increase access and funding. Lives are at stake.
Sarath gives me a ride home on the back of his motorcycle. I try to play it cool, though at first every turn seems terrifying. But Sarath exudes the same measured calm while driving as he does while speaking with patients. On our way, he chats about his plans for Pallium’s future. He wants to create smaller bereavement groups, places where quieter people feel comfortable sharing their experiences. We get back to Pallium in one piece.
I still feel like I don’t have a grasp on how volunteers work. For clarification, I talk with Dr. Amritha after rounds. The core of Pallium’s community network are the volunteer link centers. These volunteers are the initial contacts for care and coordination. They keep tabs on who needs what and providing what assistance they can. When someone has medical needs beyond their capacity, they call Pallium. It’s an inversion of the American model, with the clinic as the subcontractor to the volunteers and community.
It reminds me of an inpatient hospice I saw in Soest. Similarly, there the volunteers cooked, bathed, fed and ambulated the patients, only contracting with the nursing staff for some critical needs. The approach created a philosophical shift in the care. I asked the co-director of the hospice, Annemarie, if the care burden shifted to the clinical staff when someone started actively dying. Sure, she said, there was more of a role for pain relief, but she discourages nurses from waiting around unless the patient wants a nurse: “there’s nothing medical wrong with them. They’re just dying.” That approach, the idea that people aren’t a set of problems to be solved, comes more easily to people who aren’t clinically trained.
Of course, for many reasons it’s a bit different in Pallium. For one, it’s a community with prior relationships with the sick person. It’s not just their orientation that’s different from clinical staff, it’s their entire relationship. The care happens in people’s homes, not during someone’s shift at a physical building. Second, Pallium is entirely different in scope from palliative clinics I visited before. It isn’t just people with severe symptom management, or those who are close to death that appear in the clinic. In truth, it seems to be just about anyone with a care need. I asked several people about this, and they anticipated how Dr. Rajagopal would respond, repeating almost the same phrase: “would you rather I wait for them to be suffering more? Is it not relieving suffering to treat them now, to anticipate their decline?” It’s one of the things Dr. Amritha loves about her work. She sees a patient on a home visit and they are so excited to see her: “there would be no one there for him without Pallium.” She says she came to Pallium by accident. She started out as a dentist, just doing palliative care as part of her training. But the opportunity to feel like her work meant something to all her patients brought her in.
I go with Doctor Sreedevi to see the volunteer link centers in action. On our way, we stop to pick up Elsa. She’s a nurse trained by the link center, with less specific clinical training than a university degree. But, Doctor Sreedevi said, having less medical training offers its own gifts. One time, a patient had symptoms that suggested depression. Trying to judge motivation, the team asked if she had prepared any food. The patient said that sure, she had just had breakfast. The link center’s nurse went into the kitchen, digging through the drawers, pointing out there wasn’t any food in the place. Her connection to the community, plus the fact she lacked the blinkers that come from narrow training, helped her to see and communicate with the patient.
A lot of the visits I watch seem a lot like getting tea. Someone would flip through a box of medications, then we would sit around and chat. The conversation was in Malayalam, so I sat, sipping my specially prepared coffee. Supposedly it had less sugar in it, Doctor Sreedevi assuming I would prefer European style. It was still more recognizable as sugar water than coffee. I leaned over to Doctor Sreedevi and asked “What are we talking about?”
“What the neighbors are up to, their kids.”
We go see a patient living with her daughter. Outside the door were a pile of sandals in all different sizes. Inside, the woman was in the late stages of dementia, non-responsive, curled up on her side. Dr. Sreedevi spoke to her daughter, asking about the care she was providing. Then Dr. Sreedevi asked how the daughter was coping. She started to cry, even as the smile stayed on her face. She says she is doing fine.
Dr. Sreedevi told me she is the only caregiver for her 90-year old mother and her two toddlers.
“That’s not sustainable,” I venture.
“It’s not moral,” Doctor Sreedevi replies. The woman has seven other siblings who don’t help with the care. Doctor Sreedevi calls them with a lecture.
We see another old woman, her straight silver hair in a tight bun. Her eyes are perpetually 1/4 open, her body stooped over. Above her bed is a picture of an old man in a clean white shirt, his face serious. A small red rose is painted in the left corner. Around the simple gold frame is a garland of flower. The room is filled with images of Saints, Jesus, and Our Lady. She is suffering from the burning neuropathic pain, repeating herself over and over. She starts to cry, though again, her smile doesn’t leave her face. She asks why she should live, her duties are done, what’s the point anymore. The nurse. touches her head, pulls it in so their foreheads touch and pats her cheek, staring into her slivers of eyes, tells her she’s so pretty, she has to live so people can see her.
The woman seems calmer, as does her family looking on. It’s not the words. Presence and touch matter.
In my last couple days, I finally get a chance to sit down with Dr. Rajagopal. He’s below average height, which in India means I stand far above him, but like most revolutionaries, he carries himself with confidence. He has the look of men who are used to busyness and constantly ringing phones. But he also has the manners of someone with a fundamental sense of palliative care, the instant sense that he is listening to you and only you. I don’t know how he does it. Our meeting starts ten minutes late, and I don’t even notice. That is, until he has to take three phone calls in a row.
My sense is this busyness is only balanced through the work of Ashla, his assistant, who is constantly at his side, juggling her two cell phones, as well as fielding his calls. With an instantly winning smile and calm demeanor, she uses wheelchairs and lives in the hospital for her care needs. She reminds him to send me a promised article on social capital. I still haven’t gotten the e-mail.
I ask him about community and family in India and how it’s changing. He grabs a notepad full of memos, flips over to the other side of the page. He starts by drawing a small, scribbled-in circle, “Here’s the individual.” He expands the circle, the immediate family. Another larger circle, less filled in “the extended family.” And then a slow, easy spiral, the community, “that continues until eventually the connections fade out.”
He tells a story about the village where he grew up. His mother had to go to the hospital, but for a kilometer “there was no road. There is now, but there wasn’t then.” Four men picked her up in her easychair (“we didn’t have wheelchairs”) and carried her until they were tired. They set her down, and four more men appeared. In that village at that time, “If someone was crying alone, in five minutes, everyone would be there.”
At Pallium, the family is a unit. Patient-centered also means them. As Dr. Rajagopal tells me, the emphasis on the patient as an individual, with all “its positives and negatives, is more in your country than in mine.” One of those old orientalist adages is about how in the “East” there’s a different conception of the self. I want to avoid that. Despite my presentation, much, perhaps most, of Pallium’s care is directed towards individuals and their needs. Pallium as an organization emphasizes patient autonomy, pushing back on family’s that try to hide diagnoses. But there is something to the idea that care in India can’t just consider patients. The wellness of communities and families is critical for Pallium’s work. Perhaps this shouldn’t be postulated as a difference, but as a lesson.
On the scratch paper there’s another scribbled in circle in the bottom left hand corner, for an elder who is alone. Globalization, despite offering economic opportunity and growth, has changed communities. Children now move away for jobs and the rise of the nuclear family has shrunk the scope of the unit. Neighbors change year to year and month to month, relationships aren’t givens but temporary conveniences.
In the US, we’ve seen a similar loss of traditional community structures, but there we replaced them with safety nets and governmental support. In India, whether because of resource scarcity, or ineffiecient and ineffective government, “Or,” as Dr. Rajagopal says, “perhaps, because it is a better way,” they have adopted a different strategy. Dr. Rajagopal starts making little dashes around the edges of his drawing. “We can call it a hypothesis, but I think it is a fact” that there are compassionate people in the community, people who want to help, who find helping makes their life is more meaningful. He draws an arrow from the dots to the center. It’s about making the connections between these people and the people who are suffering around them. If you can find those people, it’s only a matter of organization.
“So this is Pallium’s mission?” I ask
“This is good, it lets me emphasize something,” Dr. Rajgopal responds. Pallium’s mission is not to build a replacement for the community. Their goal is to integrate palliative care into the medical system to relieve suffering. Some of that is through, as Dr. Raj says, “boring” measures like advocacy and changing laws, some of it is through educating others, and some of it are making for a more compassionate community. But it can’t just be that, the medical system “has to become more compassionate too.”
There are other challenges to this task that are closer to home. While it’s good that the pace of Pallium is slower than American hospitals, some of this seems to be tied to unclear clinical authority structures. Put another way, after two weeks I still wasn’t clear who was in charge of what. This led to some troubling clinical outcomes, like antibiotics given for less than the standard duration or wounds that were poorly managed partly because no one knew who was supposed to do the managing. It’s possible I missed something in translation, though it seemed like people were aware of the challenges. Some clear authorities with responsibility to address problems might go a long way towards helping patients.
We hear someone burst into tears, Dr. Raj rushes out. I sit, trying to collect my notes, think about if there’s another question I should ask. Dr. Raj returns, “someone just died.” He walks into his washroom to clean his hands. Our meeting is over.
The next day, I get another couple minutes with Raj. He talks about the challenge of making palliative care a priority in global health. Something like HIV/AIDs is a new problem, and it’s something, with good reason, that people will put resources into solving. But pain is an old problem, one we can’t even see. He mentions Terry Kettering’s poem “The Elephant in the Room”
There’s an elephant in the room.
It is large and squatting, so it is hard to get around it.
Yet we squeeze by with, “How are you?” and “I’m fine,”
and a thousand other forms of trivial chatter.
We talk about the weather.
We talk about work.
We talk about everything else, except the elephant in the room.
There’s an elephant in the room.
We all know it’s there.
We are thinking about the elephant as we talk together.
It is constantly on our minds.
For, you see, it is a very large elephant.
It has hurt us all.
But, to paraphrase what Dr. Rajagopal told me at the end of the interview, once you know the elephant is there, it won’t let you go.
I’ve been in India for three weeks, struggling to encapsulate my experience. There’s too much. So this is a collection of anecdotes and impressions, divorced from theme or analysis.
The food in Delhi is consistently incredible. Growing up in the Midwest, black pepper was an aggressive spice. Here, it is an incidental seasoning. The flavors at play in Indian food are still a mystery to me, but they’re delicious.
However, and not to put too fine a point on it, my GI tract is like Delhi pollution. It’s always at an unsettling level, but with a few New Year’s Eve fireworks, it becomes deadly. My Wisconsin stomach is adjusting.
When I was little, my elderly neighbors invited me to rake the leaves in their yard. Rather than focusing on improving the order of the lawn, I took joy in entropy, piling the leaves up to be scattered with a leap, until their brittle frames were pulverized into unrakeable dust. My memory suggests I was raking for weeks, though in truth, it probably took a couple days. Nonetheless, slow work for a couple hour job. With a regular employer, it would have been fraud. But that wasn’t the point. They were neighbors. They wanted to give me a gift, and the leaves were a good, Protestant work-ethic building pretense.
I don’t remember how much I was paid. At the time, anything over five dollars was as good as a million. What I do remember is that my labor was incommensurate to the payment. My mom explained that I couldn’t accept that much, that I had to negotiate down.
This was true all throughout my childhood. I would house sit and leave behind money in the envelope. Christmas gifts were ritually refused before accepting. On a trip to a theme park with my girlfriend’s family, I was dextrous enough to pay my admission to avoid the uncomfortableness of the gift.
That was my upbringing, and it’s deeply ingrained. I fall back on it instinctively. I’m not a master negotiator.
This is not standard operating procedure in India. Rickshaw drivers are almost insulted if you take them at face value, or at the very least flash an instantly recognizable smirk. The bathroom at Qutab Minar cost five rupees, and all I had was a fifty. Three ten rupee coins were slammed onto the table. After I insisted, another ten rupee coin followed.
I cut my losses to attend to a more pressing matter. Paying for a ride later, I discovered that the last coin was counterfeit.
My previous orientation to payment doesn’t work here. If I were a better economist, I would speak to how information assymetries, like knowing the price of a particular rickshaw drive at a specific time of day, create a dynamic price mechanism that functions outside of the classical microeconomic model of a fluctuating market that arrives at a single price for all sellers. But I’m not. So all I know is that that counter to my instincts, I bargain down on price, not up.
It’s stressful, moving so far outside of my normal. But it’s also kind of fun. The first time I negotiated a ride from a hundred rupees (“absurd, sir”) down to fifty by performatively walking away, it scratched the same itch of socially sanctioned lying that I got from theater. While I still find the constant attentiveness draining, once I knew the rules of the game, it became fun.
Plus it’s mostly in good faith. The quoted price is high, but if I make it clear I’m a “serious negotiator,” I usually only end up paying a 10 rupee foreign white kid fee.
This brings me to a key part of my experience. Somehow, as I walk around, everyone can tell I’m not Indian. This manifests in pretty benign ways, like the fact I’m going to pop up in a lot of vacation selfies. The red hair gives me an exotic flavor.
Broaching conversations with strangers is more casual than it has been elsewhere in my travels. They run on a script. The prototypical was a conversation with a pair at Qutab Minar.
“Where are you from?”
“Uh, the States…USA.”
“Ah, America. First time in India?”
“How do you like it?”
“Is it beautiful or,” he gestures to the ancient palaces around us “so beautiful?”
This bit can also go the other way, like the college kid who complained about the dustiness. But eventually, we always got around to some version of this:
“We would like to go to America.”
“Do you have a number we could call?”
Now, I’m really not that well connected to the US immigration office. So I declined.
Even if not asking for bureaucratic favors, there’s an aspirational quality to the idea of the US that I’m still thinking through. Like most good liberal arts students, I have an appreciative but critical view of my nationality. It’s tricky to think about how people here understand it, and how that shapes how they read me.
There are less pleasant aspects of my conspicuousness. I was killing time around Rajiv Chowk, waiting for my friend to finish work. I knew there was an underground market someplace nearby, but I was struggling to find it. Passersby, recognizing my confusion, kept pointing where I should go, but also suggesting I take an auto-rickshaw there, “it’s safer, and only ten rupees.” I was wary and resisted, as this was written up as a classic tourist scam. But after the sixth guy recommended it, I thought how could all of these people be in on the same scam? Plus, 10 rupees? That’s like fifteen cents.
So I hopped in and I was taken to a street of mall like buildings, filled with tourist crap. Clearly not where I was supposed to be. But when I walked outside to leave, all of the rickshaws that had been jostling for my business ignored me. When one finally responded, the price had quintupled, and my bargaining skills floundered. I gave in. On the trip back, my driver informed me that they all got a commission from the mall, so i had to beat their price. Annoyed but appropriately chagrined, I got back to the Metro stop, and went to the first recognizable shop I could find: Dunkin Donuts. Their coffee tasted the same as it did in the US. It was pretty bad. But familiar.
As far as my project goes, I’ve had some trouble figuring out where to start. Getting in touch with people, and even figuring out how to get in touch with them, has been trickier than I expected. But I travel to Kerala soon, where I have a palliative care organization that should give me some more guidance. In the meantime, I just went to a Punjabi Sikh wedding, and that has definitely left me with plenty to think and write about. Did you know they can last five days? And another five to recover?
On the principle that Europeans take their holidays seriously, I decided to take a little vacation. I was planning to meet my Mom and Sister in Rome for Christmas, and it seemed appropriate that for my first time in Europe, I should take a little Eurorail trip. So I wandered southward from Amsterdam to Paris to Nice to Rome, before hopping over to Crete and Athens for Christmas. Not a bad break.
The Watson offers me this freedom, but, fortunately for me, people die everywhere, so I was able to continue to do some “research.” Given that I was mostly looking around the sorts of world capitals that had been built on old Roman ruins, this mostly meant exploring old catacombs.
I started in Paris, whose image as the city of lights and love is in tension with its history as essentially a live-in sewer. Its catacombs grew out of two concurrent public crises. The first was that blocks of houses kept falling into the earth. Since the Romans, Lutetian limestone had been mined from the Paris bedrock, with varying degrees of safety and forethought. As the pillars began to buckle, sinkholes started devouring houses. The Inspection Générale des Carrières (Inspectorate of Mines) was founded in 1774 to map and shore up the Swiss cheese foundations of the city. Around the same time, Les Innocents, the euphemistic name for the paupers mass graves, had begun to overflow, with walls of propreties bordering the cemetery collapsing beneath the weight. spreading disease and human decay to their surrounding neighborhoods. Seeing a way to get rid of the bodies on the cheap, the old mines were consecrated, and over two years, the peacefully at rest remains were picked up and plopped into their new home, and the door was shut behind them.
The space was reopened in 1814 Héncart de Thury, the head inspector of mines, an entrepreneur who saw an opportunity. The bones of the interred are arranged in patterns, the tibias and scapulas filling the spaces along the walls between rows of skulls. Realizing the obvious entertainment value of having a date in this skeleton jungle, he placed quotes on death from the Bible, literature, and poetry around the maze and started selling tickets.
Now a part of the Museé Carnavelet, the catacombs have become educational in intent, leading one through the historical narrative of the place, from the geology to engineering tricks that hold the place up. People take pictures with the bones, the flash from their cameras bouncing around. The path is well-lit and fixed, leading to a gift shop where you can buy a t-shirt exclaiming “Keep Calm and Remember You Will Die” and absinthe in a skull shaped bottle. It’s a little kitsch.
But in the moments when the sounds of the family vacations faded away, the experience was unsettling in the best way, while the macabre vision of the mountains of skulls offered an underlying humor. A sort of pleasurable unease under the weight of the anonymous dead.
By contrast, the Catacombs of San Callisto in Rome were a more sedate affair, with the bodies moved out of public view to the lower floors. The spaced house many of the early Popes and Roman converts to Christianity. Small niches in the volcanic rock held the bodies. Families often shared a room, including space for their slaves, “freed” at the point of death. Early Popes were buried there as well, their spaces crowded with other niches from those seeking some divine perks. During periods of Roman persecution of Christians, it’s said church services were held in the catacombs, as Roman law strictly prohibited interference in cemeteries. Unlike the Paris Catacombs, the tour was led by a guide. Much of the emphasis was on the religious-historical significance of the space, the ritualistic nature of the artifacts and frescoes left behind.
Both spaces are unlike a cemetery. A cemetery is solemn, but it’s a collective quietness. The peace of the dead is shared with the living. But to enter a catacomb requires moving beyond a threshold, descending underground. Unlike the Necropolis in Glasgow, one couldn’t imagine having a picnic among the bodies. But in the Parisian catacombs, the laughing skulls point to a different kind of peace. The macabre death has a cheery nihilism to it. Entering the catacombs, there is a sign that says “Arrête, c’est ici l’empire de la mort!” Stacked in grotesque piles, the bones say “we can’t be touched here.” In the disregard paid to the bodies of the paupers, there’s an authority claimed.
With the Roman catacombs, the tone is changed. The slaves may have slots next to their masters, but always in secondary places, off to the side. There are trinkets and items placed near them, and the spaces nearest to the Pope are the most valuable real estate, as if the divine selects for heaven based on geographical distance to piety. Death feels less strange in Rome, not an ultimate transformation, more a move to a new neighborhood.
At the same time, with the Parisian catacombs, the anonymity offers no space for an interplay between the living and the dead. The dead are unrecognizable, and we can only look at them as a future we cannot understand, that can’t be integrated into our experience. We can visit their realm, but hear only their silence. Absent ritual significance, it unsettles but does not provoke. The place of religion, as offered in the Roman catacombs, is to give a language to this experience. The dead are offered dignity, because we see in them a fundamental part of ourselves. The experience of visiting is less immediately visceral, because I at least lack the framework for understanding the role these individuals played. The meaning of a stone niche is specific to those who survived. The Popes and Christian symbolism hope to put meaning into life’s ultimate transformation.
Two ways of interacting with death, one reverent, the other macabre. Self-serious and ironic. A symbol of status, rubbing up next to Popes and a ramshackle resting place for the unremembered.
I dunno, at least those are my initial thoughts. I’m continually curious about what seem to me the two broad categories through which people read death. I’ve made it to India (!), where maybe I’ll find a totally different approach to this sort of thing. Who knows.