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 Pallium 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.
The discussion about the right to die when “one’s life is complete” often revolves around ethical principles of bodily autonomy and self-determination. Those are worthy grounds, but I’ve found that they limit the scope of the debate. When someone would say “It’s my body, I have a right to do with it what I want,” it’s hard to counter while within the classically liberal, Western framework that recognize individual self-determination as an important political virtue.
But while is is important to acknowledge how this change to euthanasia law does move the conversation from diagnostic questions to philosophical-ethical grounds, this kind of reasoning relies on an abstracted vision, distant from the reality of human aging within a specific society. It creates an illusion of a person quietly staring back at their accomplishments, comfortable that their life’s work is complete. I talked with Anne Goossensen, a quality of care researcher who focuses on non-traditional measures of medical success.1 She co-wrote a couple of phenomenological studies on the lived experience of people considering self-euthanasia. Contrary to the grace and dignity implied with “a completed life,” many had immediate, tangible concerns about their future.
Professor Goossensen emphasized “a fear of losing control.” She found examples like a man on a walk with his daughter, watching birds, who suddenly suffers from fecal incontinence or a woman whose meaning in retirement came from experiencing and creating art who goes blind. The inevitable damages of old age destroy familiar agency, in turn taking from people the structures and activities that had offered them meaning. By choosing self-euthanasia, the people feel they are able to assert some control of their lives. Professor Goossensen noted this need for control is particular to the modern age. In the past, religion assured people that the transcendent world held the ultimate agency, and that to assume authority over your life was not just absurd, but nearly blasphemous.2 But now even the religious people she’s interviewed believe that the authority to “end their suffering” ultimately lies in their individual desires, even if they acknowledge God’s ultimate position.
She takes it one step further: “We have a problem with ‘broken’ things.” The “we” in this case is modern, Western society. We desire youth and flawlessness, smooth skin and limber limbs. We treat the loss of these as indignities. The idea that one’s life loses its value and purpose because of this loss is deeply ingrained in our society. Atul Gawande’s Being Mortal digs into this, noting how our modern, western societies are an inversion of the historical trend, worshiping our youth over our elders. Our sense of what makes our lives valuable is tied to our role in the economy and our capacity for change, traits tightly linked to youth. A failing body is considered less worthwhile, and this sense, implicit or explicit, is internalized and manifests in a desire to control the end of one’s life on one’s own terms.
It also ties to the other recurring theme among those considering euthanasia: a deep fear of loneliness and of becoming a burden on one’s children. The social networks of work fade, a spouse dies, and increasing physical limitations mean that the elderly end up relying on their children, losing their independence and experiencing the shame of having their dependents become providers.
In considering elderly loneliness and dependence, it helps to think about the shifts in Dutch medical care. I got a run-down from Dick Winterkorn, a retired GP originally from upstate New York who moved to the Netherlands after marrying a Dutch physician. We met in his home, where we grabbed coffee in his kitchen. As we sat down to chat, another physician, a nurse, and a secretary walked in for their mid-morning break. Dick and his wife’s home is based on the old model Dutch medicine, where the family doctor’s home doubled as physician’s office. Walk in through one door and you find a cozy home, early 20th century Dutch home, through another, an examining table and a case exhibiting old medical equipment. Patients could call at all hours of the night, and the doctor’s work was essentially constant. It was Dick’s wife’s grandfather’s, but once Dick’s wife retires, they’re planning to sell the place. Most modern doctors have a separate office. Rather than being on-call at all hours, doctors work regular shifts through a call-center, taking all calls for a geographic area for a weekend rather than their own patients at any time of the day. Dick says he works harder during those shifts, but at least he knows he’ll get to sleep when he’s off. And if someone needs immediate medical attention, they can go to the hospital and get what they need.
There’s big advantages to this system. There’s evidence that suggests this approach reduces costs and improves patient outcomes, and, in the Netherlands at least, they’ve retained the valuable GP relationship. But it does suggest a shift to medicine as a more compartmentalized relationship. Interactions with the medical world are either check-ups and fixes for immediate challenges, or intensive long term treatments for complex problems. The continuum for medical care has shrunk.
But while the shift in primary care is all-in-all a good care, the same general approach has problematic public policy implications for residential geriatric care. The Netherlands had a network of “old age homes,” akin to assisted living facilities in the United States, that offered a compromise between solo apartments and nursing homes. They provided the sort of limited care designed to allow the elderly to retain their independence, with the added benefit of a built in social space for people at similar place in their life. But they weren’t considered cost effective and are slowly shutting down, leaving the elderly with the choice between a total institution like a nursing home, or finding some way to continue living independently. The implicit assumption is that the family will step in.3 So the public policy approach assumes that the elderly have a family with the resources, time and interest in providing for the elderly member, and moreover, that the psychological costs for the elderly are worth it.
The point being that the social isolation and stigmatization the elderly experience is both socially constituted and complicates the ethical assumption of a autonomous self deciding to rationally end one’s life.4 To argue the state should address these problems through offering a right to die seems to me to rest on an ageist assumptions of human value. Without disregarding the pain of losing capacity, and a legitimate desire to control one’s body, it seems dangerous to address the challenges of aging through state legitimization of the complete life, without an incredibly careful consideration of the way society shape’s the elderly’s decisions.
But hey, that’s my opinion, and it’s not my country or my culture. And the Dutch seem to have an impressive ability to discuss these challenges fully and complexly. Euthanasia as it currently stands took a decade of national conversation. This one is just getting started.
1. I hope to write more on her work later. She observes the quality of the relationships between carers and the cared for, instead of the usual array of variables about the patient’s body. It’s a fascinating way to rethink what matters in medical care, but this is already a little too scattered to dig into here. ↩
2. Jenny van der Steen also observes that this is a particularly Dutch tendency. In a country where much of the land is below sea level, control and tidiness are seminal virtues. A friend and I walked around the small Dutch town of Edam and remarked on the absurd level of aesthetic detail visible in each living room. They looked like the fake living rooms in the furniture sections of upscale department stores. If you ever visit Edam, look at the light fixtures. As far as my spaces are concerned, the highest complement given to my dorm rooms is that they “look lived in.” It’s amazing the mess I can make in a hostel dorm room in one night with my little backpack. ↩
3. Atul Gawande, again, has a compelling analysis of the shift away from the familial model in the Western world, comparing the experience of an elderly person in the States to that of his grandfather in India, a man whose position as family patriarch meant that the entire family network supported him in maintaining independence. By contrast, in the more modestly sized American household, where children scattered to other places for careers and spouses, the burden of caring for the parents tended to fall to the eldest daughter. Lots of assumptions about the lives of women, like acting as housewives or being more geographically tied to home, no longer apply. He does a better job describing the whole thing, so uh….here. ↩
4. It is also to dodge the important question of who we live for. Professor Goossensen bring in examples of spouses who want to die together, but one is ready before the other, or the wounds felt by children and grandchildren who find their relationship with the parents or grandparent’s meaningful, only to have that meaning rejected in that relation’s decision to die. Inside of the messy reality of these familial network, this rational actor model fails to describe reality. ↩
In the summer before the Watson, I went to my dentist. I explained I wouldn’t be around for a year, that I would be traveling the world exploring approaches to death and dying, so make sure to patch up anything that might need doing. He didn’t miss a beat, regaling me with thoughts on physician assisted suicide in Canada while his hands evaluated a back molar for a crown.
Whenever I mention my work, folks jump to the question of euthanasia. I don’t know if it’s a macabre fascination, its political ramifications, or its ethical complexity. But in truth, before traveling to the Netherlands, I hadn’t thought much about the subject. I was vaguely in favor of some sort of legalization, but always thought of euthanasia as a divisive issue, one that distracted from policy questions where common ground is easier to find. But after a month of conversations in the Netherlands, I’ve discovered the debate goes beyond abstracted ethical and religious questions, right to the heart of what we mean when we talk about freedom, independence and a meaningful old age.
In order to understand the Dutch conversation about euthanasia, it’s necessary to look at how the right to die developed. According to Jos Welie “Even though euthanasia and assisted suicide were illegal, cases against euthanizing physicians were dismissed by prosecutors and judges alike because of article 40 of the Dutch penal code. Article 40 waives the liability to punishment for anyone who commits a crime while compelled to do so by force majeure, that is, by a psychological or moral force so strong that the perpetrator could not resist it.” Among privileges like prescribing narcotics and slicing people open, doctors were afforded the authority to end someone’s life in extreme cases as an aspect of their role as independent professionals, even if it was understood as a workaround at the ethical limit of normal legal structures. At the same time, this sort of extrajudicial reasoning without clear guidelines, dependent upon the discretion of the judge, was untenable in the long term.
Euthanasia’s legal status in the Netherlands grows out of this tension, and is thus narrowly tailored to emphasize physician accountability and patient autonomy. The physician and the patient must agree that the patient’s suffering is unbearable and intractable. The patient must request euthanasia, and the doctor has to believe that they have the mental competence to make that decision and that the choice is long lasting. The doctor must also request a consultation by a specially trained doctor with no prior relationship to the patient. The second physician forms their own separate opinion about whether the euthanasia is justified. Their opinion is not binding, but both doctors’ justifications, along with the case, are forwarded to a separate committee that evaluates the legitimacy of euthanasia. If they have doubts, the physician that conducts the euthanasia may be prosecuted for homicide.
Here are the big takeaways. First, euthanasia is legally a specific medical treatment for a specific problem, not a broad based “right-to-die.” Second, the legal structure is very tight, biased towards the prevention of inappropriate use, at the risk of “underprovision.” One doctor I spoke to described it as almost “guilty until proven innocent.” Finally, individual competence and choice are paramount. A family cannot request euthanasia for the sake of a patient who is either unconscious or incompetent,1 and a patient must be considered competent enough to make the choice for themselves.2
As far as I can tell, there is near consensus among the Dutch that the current legal access to euthanasia is at least acceptable. The medical professionals are grateful that the law emphasizes their ethical discretion, the broader population is happy the option is available, even if the bureaucracy does get in the way, while those with ethical or religious objections generally thought the law was limited enough in scope that it could be ignored.
Jenny van der Steen, an academic researching palliative approaches to dementia, helped me to understand how this consensus was forged. Over dinner with her, her husband, two daughters, and a family friend from Eritrea, I was given a basic overview of the Dutch societal decision making process. The Dutch have a saying that roughly translates as “don’t stick your head too far above the grass, or it will get cut off.” In other words, societal interests are also your own, think beyond yourself. This, plus a relatively homogenous society and high trust in political institutions and professionals, means controversial subjects like the euthanasia law are discussed for nearly a decade, insuring everyone has had their say before a change is made. Consensus is almost an inextricable part of the process.
But despite this discussion-based consensus, there remain at least two fundamentally different conceptions of euthanasia’s purpose. One is the narrow exception to laws on killing, designed to meet a specific need of a small population already close to death. But for many others, the bureaucracy built around protecting physician discretion is as a violation of individual autonomy. Euthanasia is a reflection of the liberal right of self determination: “who are you to tell me when I should die? My body is my own.” It moves from a specific service into a general “right to die,” and if it is a right, then the government is obliged to insure access. The current debate over euthanasia reflects this qualitative difference, as the discussion moves to the right to determine whether one’s “life is complete.”
There’s a lot to dig into with this shift, and so it feels like it deserves its own space. The takeaway here is that while the Dutch may argue about the exact bureaucratic procedures, the Netherlands are not Senator Santorum’s nightmare of forced elderly euthanasia. The law is designed to protect from those sorts of abuses.
1. Such as a case of late stage dementia, though an exception can be made for a person who has an advanced directive and repeatedly indicated they wish to receive euthanasia in the case of dementia prior to dementia limiting their decision making capacity, a situation that opens up a whole other can of ethical worms that I can’t/won’t go into.↩
2. There is a whole other category of euthanasia that I’ve left to the side, because I feel I lack the expertise to evaluate it. Dutch and Beligian law allows euthanasia in the case of untreatable mental illness. An excellent article by Rachel Aviv covers the challenges in incredible depth, but as a simple level, it explicitly raises the question of which subjectivities we choose to trust as a society. If someone with chronic depression has pursued treatment and is left with their pain, do we allow them to decide to end their life? Why are physician’s entrusted with the discretion over who has the “competence” to end their life? Can we be considered a unified, atemporal, singular self in these decisions, capable of making a decision to end our lives that our future selves would respect?
The point being this gets into deep metaphysical waters I can’t trust myself to navigate in any sort of intelligible way. Please please please send me thoughts, I’m curious where I should look.↩
My original plan was to jump straight from Ireland to the Netherlands, but Orla Keegan at the Irish Hospice Foundation sent me a link to a blog post about advanced directives from the University of Glasgow. Digging a little further, I found out about the Cecily Saunders Institute in London. Ryanair tickets are cheap, I felt like comfort exceeded discovery in Ireland (another one of those Watson phrases), and the collapse of the pound, bad for British exports, was good for an American Expat. A two week UK trip seemed fun. So I packed up and flew to Glasgow.
Random spot in the University of Glasgow
Switching from Ireland to Scotland is hardly a world shattering transition. There’s a shared Celtic tradition, and a similar, erm, complicated relationship with the English. Meandering through the city, I’m in a familiar pattern. Fixed on Google Maps, I move towards a goal, this time a random working class district in the north of Glasgow. Reaching it, I decide to wander back. The city funnels me back to where I began, the shopping centers surrounding Glasgow Central Station.
Not that I dislike the familiarity. The year is marked by constant change. Consistency is welcomed where it’s found.
My first “work” day in Scotland was spent with Catriona, the PR representative for the end-of-life studies group at the University of Glasgow that gave me the excuse for this extra jaunt. She first took me to the Necropolis, where the wealthy families of old Glasgow are buried, mostly old tobacconists. We reflected on the way the elite class immortalized themselves.
We then met with Richard Thompson, a PhD student in design, who is working on developing alternative approaches to grave memorials. He describes his work so: “my grandma was a writer. She left behind some books and a few letters, things she basically had control over. But my nephew, even before he was born, had sonograms on the internet.” A woman recently sued her parents for putting her baby pictures on the internet, claiming “They knew no shame and no limits…They didn’t care if I was sitting on the toilet or lying naked in the cot, every moment was photographed and made public.” Our digital selves are created before consciousness, develop our whole lives, both through private communication and deliberate public presentation, all immortally preserved on some server somewhere. What happens to these selves when we die?1
In the immediate, Richard is designing a modern day memorial, some way of preserving and presenting our digital legacies. He’s in the early stages, asking folks to imagine their digital memorial. Some are small trinkets, almost a digital photo frame. Some are grander, a room with screens showing different parts of a life, designed to decay with time.
Contrast these representations to the gravestones in the Necropolis. Graves give remarkably little detail about the deceased’s life. A couple dates, a name, maybe a career. Everyone is a beloved husband and father or a devoted wife and mother or an adored child. And these are the memorials to those who were wealthy, the industrial elite’s tributes to their status.
At the bottom of every Google in Europe is “Some results may have been removed under data protection law in Europe,” Google’s acknowledgment of the new right to be forgotten. For much of history, this right was insured through historical indifference. There were no records for the vast majority of people, and those who had the status to be remembered had the wealth to design their legacy, to some extent. Now billions of people have full and complex digital legacies.
The National Museum of Scotland
If we consider the broadened definition of life to mean the memory of what we did in our lives, what does the preservation of our digital data mean for our memorialized selves? We did not choose to document our lives, and unlike the industrial families in the necropolis, our texts are on some server somewhere, not wearing down in the rain. And nowhere are we assured that we were a “beloved wife and mother” or any of the usual headstone sayings. Instead, every Facebook message I sent since middle school sits on some server somewhere (horrifying, I know).
Richard is trying to move beyond headstones, to present our new digital sides. He brings in numerous tensions, between controlling our digital legacy and that control’s tendency towards hagiography, the inherent durability of digital records versus the right to be forgotten. For myself, there’s the question of owning our records. Facebook transforms the profiles of those that have passed into memorial pages, but their control seems inherently problematic. After I die, can my life be used in marketing materials? Will Facebook retain a record of every article I clicked on, to recreate a facsimile of my media preferences?
The other faculty were mostly at the other campus in Dumfries, but as I considered what Catriona said, I decided take a weekend in Glenfinnan and see a little of the Scottish Highlands. I showed up at the perfect time, after the midges died and before it got truly wet and miserable The few rain showers added to the beauty, the sun coming in between the clouds, refracting a golden light over the deep red hills.
Plus I was near the viaduct from the Harry Potter films.
On a hike, I kept hearing a barking echoing off the rocks. I asked the folks at my hotel about it: “Oh, the stags are rutting.”
Ah, something sounded a bit unhappy.”
A beat, and then with a chuckle:
“Oh, I’d say they’re pretty happy.”
After my, ahem, fantasy holiday, I traveled to Dumfries, where Catriona kindly put me up in a spare room for a couple nights. I spend the next day talking to everyone I can in the study group.2
The view from Arthur’s Seat
I talked to Jacqueline Kandsberger, a graduate student researching Advanced Care Directives (ACDs). ACDs tend to pop up in conversations with hospices as an element of community outreach. The theory is that ACDs will allow individuals to extend their autonomy, even if they lose capacity, making decisions about intensive and invasive treatments like feeding tubes and ventilators. The theory is that these policies will reduce confusion at the end of life, allowing family members and physicians to carry out the wishes of the patient, and reduce the use of aggressive procedures that may prolong suffering at the end of life. Furthermore, while not cited as a core reason to use ACDs, they do tend to reduce the use of costly treatments.3
Jacquelyne pushes back on some of this theory. She notes how ACDs, a legalistic document tailored to a specific situation (i.e. the loss of capacity) are often treated as the end all, be all of end of life planning, a purpose beyond the original inspiration. Furthermore, people understand advanced care directives as conversations about more than extending autonomy. ACDs are a symbolic right-of-passage into acknowledging one’s death, which in turn opens other questions about becoming a burden to one’s loved ones and the value of lived relationships. Planning for death can’t be treated as an abstraction, a technical, objective evaluation of utilitarian preferences, but as a social process located within the interplay of one’s values and relationships.
Not that doctors actually approach these conversations from a legalistic perspective. I have two doctors that have been my mentors, one in geriatrics and the other in geriatrics and palliative medicine. I saw both of them navigate these conversations, carefully balancing practical questions (do you want a feeding tube?) with values (What do you do that you enjoy? What’s important to you?). Critically, they did not view these conversations as a single moment to fill out the paperwork (though of course, the paperwork matters), but as part of an ongoing relationship.
But, and this is from reading rather than personal experience, both the nature of medical training and our (by which I mean the American) medical system means that these conversations are challenging. Doctors report finding advanced planning conversations uncomfortable, aware of their symbolic seriousness but with limited training in navigating those waters. Add in the pressures of time, and the often more temporary relationship between doctors and patients, it becomes tough to bridge the gap between the legalese and the human reality.
This was further complicated when I sat in on a class taught by Naomi Richards on Death Cafes. Death Cafes are a movement started by Jon Underwood and Sue Barsky Reid in England. The thought is to create a space for strangers to come together and talk about death to “to increase awareness of death with a view to helping people make the most of their (finite) lives.” On paper, and from the perspective of someone studying death and dying for a year, this is admirable, breaking down the death taboo. In my experience, when I introduce my project, people welcome the opportunity to talk about death, something that weighs heavy on their minds but which they lack a forum to discuss.
Well, except for the people who pull back, nervous, or joke about swapping hostel rooms.
This speaks to a challenge similar to that presented by Jacquelyn. The Death Cafe movement positions itself as value neutral, simply a forum for discussion. But the value of these discussions comes from the norm that talk, and in particular a public confessional, is good. It’s assumed that individual reflection or private, familial conversations are less valuable or would not happen in the absence of the death cafe. Furthermore, the almost jovial aesthetic of the movement can undercut those for whom death is, legitimately, a traumatic or feared thing. There is an implicit value system that society needs to be able to discuss death openly and publicly, a certain cosmopolitan public intimacy.
This is not to say that I don’t hold the view that the death taboo can, and has, caused great harm, just that it’s problematic to present ACDs or Death Cafes as value neutral or agendaless, simply tools to improve life. I think they do help people, but I’m coming from a particular Western, liberal arts higher-education, modern medicalized perspective.
While walking through the Necropolis, Catriona talked about coming to this job from her previous work as a freelance reporter. She mentioned how the constant talk about death and dying started to wear on her. Maybe death shouldn’t be a taboo topic, but it can’t be healthy to think about it all the time.
I agree. That’s why I set aside a decent chunk of my Watson funding for food.
The next day, I went to Edinburgh for a bit, nominally to talk to Dylan Hassel, a public health graduate student whose work on a scoping review of the literature on palliative care has given me more reading than I know what to do with, but really because everyone told me “you have to go to Edinburgh.” It is an incredible city, itself built on itself. So you can think you’re headed to a nifty coffee shop, when it turns out its on the road beneath you.
It’s also an interesting place to think about death and the macabre. Edinburgh’s extensive catacombs, cloudy skies, and all-in-all creepy atmosphere has earned it a place as the world’s most haunted cities. But is that tied to my project? The macabre is a way we interact with death, an acknowledgment of our twin fear and fascination. But I tend to avoid focusing on it, despite suggestions that I visit cemeteries and crypts. My interest in death and dying has been on the role of society in aiding those moving through those processes. But maybe societies fascination with the creepy gives a lens into its relationship with death, a context for the death taboo. Something to consider.
I also went to the Surgeon’s Museum, which was creepy and cool. Big fan. They didn’t let me take pictures though.
I was flying out of London. The hope was to visit another notable end-of-life research center, the Cecily Saunders Institute. Unfortunately, after e-mailing them a few weeks ago, right before heading down I got this response. If I was to visit I would need:
“1. completed visitor application form
2. A copy of your CV.
3.Two professional references.”
I was also strongly encouraged to donate to the institute. I decided I could afford to skip it. But I still had to get to London, so I gave myself one day there to sightsee. Ridiculous, I know, but wouldn’t a week be nearly as silly? I’ve been to NYC many times, and I’ve barely scratched the surface.
The moment I arrived, I was aware of the number of people, the scale, the sheer constantness of London. The cities I’ve visited so far, from Dublin to Glasgow, felt provincial in comparison. The energy was exhilarating but exhausting.
My hostel was, well, a bit much. It catered to school groups, and placed me in a 12 person dorm after I had requested 4. If you haven’t stayed in a hostel, let me say: 12 people means the sleep is going to be much less restful. 12 people coming in and out, and the odds are much higher one of them snores, or in this case, fearfully moans in their sleep.
The next day, I decided I should stroll around, do a few tourist things. I stopped by the British Museum and the National Gallery. Both were stunning and massive. I had no idea where to start. The constant moving for the last two months, barely sleeping in my hostel, and the weight of the cosmopolitan left me overwhelmed. I wandered out into Trafalger Square, hoping to find a restaurant, or better, a pub that seemed calm. I wandered into the crypts of St. Martin’s-in-the-Field, in theory because it related to my project, in practice because it had a cafe with a free restroom. There, I saw a sign indicating that the evensong had just started.
I decided to wander in. Again, like the Catholic service in Dublin, the Anglican was familiar, but with enough small changes that my instincts were slightly off. Stood up too soon for songs, mumbled through some prayers. But it was calming, feeling the enveloping of the ritual, the stillness. At the end, the minister announced a lecture that night, which recommended to anyone “who takes the questions of rationality and theology seriously.” It was a meditation by Sarah Coakley in a series on the well known “Good Samaritan” story from the Gospel of Luke. I struggled to follow all of it, but she moved between theology and evolutionary theory, trying to examine and explain how we can learn to care for the other. She argued in favor of a radical empathy, an excessive altruism, one that couldn’t be found purely through the logic of rational choice theory but required an ascetic reflection. I dunno, with where I was at, the self-reflection of ascetic isolation seemed necessary but impossible.
Fortunately, the next day I flew out to the Netherlands, where I now have a room to my own. A family friend, Mirjam, encouraged me to contact Marc, her brother, and Barbara, his wife, and they, incredibly kindly, offered to put me up for some of my time here. After so much time wandering, I was ready for a couple weeks with a desk and a bed of my own.
1.If you have a New Yorker subscription, this is a fantastic short story on that theme by Mavis Galant. You can also hear it read here.
2.University of Glasgow-Dumfries is built in an old psychiatric facility, reconverted into a university. Of course, this leads to all sorts of horror stories. Catriona tells me there’s a rumor that the tunnels running between buildings were used to dispose of bodies, “but they’re just steam vents.” The campus is beautiful, open fields and lovely sandstone buildings. The mental hospital was supposed to be a more modern institution, designed for healing and support instead of simply containment.
3.This podcast talks about an interesting example from Wisconsin:https://www.npr.org/player/embed/496749767/496761394
I’ve tried writing this three times now, but each time it comes out as too focused on the narrative of my experience of the election, a long, self-indulgent sort of story about a rough and lonely night. Given the stakes faced by a lot of Americans, it seems unimportant to publish. Suffice it to say, the election of a man who has accused friends of mine as harboring terrorist sentiments and of being the worst of the worst in our nation, threatened the freedom of the press and the safety of those who speak out, and who has been described by those who know him well as having “an existence unmolested by the rumbling of a soul.” I feel far from home, and focusing on my project has been nearly impossible.
I’ve also tried to write about the subject is some way that could be tied to my project, exploring how my emotional reaction to Trump is tied to my research on grief. But there’s a lot of people writing and talking about grief and the election, and my writing fails to acknowledge those who are tremendously excited. Certainly an elite political order has been overthrown (though I would ask if an Administration led by a billionaire, the head of the RNC, a former Speaker of the House and the Mayor of the NYC can really be called a populist revolution). But still, the election has awakened the dominant political order to the system’s failure to meet the needs of millions, leaving 60 million people to throw a molotov cocktail at Washington and millions more to stay home in disgust. Those voices matter, and I’ve been guilty of ignoring and belittling them.
And I do believe in the democratic process. By our rules, Trump won, even if it was through a historical quirk. As an American, I wish him luck insofar as he works to uphold our values and better the lives of all Americans. But he doesn’t get a blank slate, he’s not free to create a new persona separate from his campaign persona. The increased violence against minorities and the spike in LGBTQ suicides? This is what happens when you talk like President-elect Trump and Vice President-elect Pence about people, telling your supporters to beat up those who protest and describing immigrants as rapists and terrorists, in total disregard for reality. To the extent our differences in politics are due to different reads on classic political dilemmas, a government that helps the vulnerable versus one that minds its own business or other legitimate tensions, I respect their right to a different philosophy. But to the extent the Trump Administration moves against values I view as fundamentally American, like the freedom of speech, assembly, press, and religion, each of which been challenged in the first week after the election of our new President, I will not view the debate as in good faith or deserving of the benefit of the doubt.
And I hope my friends, who are doing more than I out in the streets this week, are ready for the long haul and are ready to make new alliances with people we’ve ignored.
All of this is to say my head is not really in the project right now. I have a long blog post that was put on the backburner for a while I’m just going to publish after a little cleaning up, because I need to move on. I’ve Skyped friends back home more regularly, finding people to share in my anxiety. That’s been my focus.
And here I’ve gone on longer than I told myself I would, regurgitating things I’ve seen elsewhere. I think anyone who wants an insightful take on this election should look elsewhere. I’m going to take the advice given to me Sneha, the Watson Program manager, when I woke up at 5 AM on the 10th with a strange weight on my chest and needing some reason not to just buy a flight home and skip this whole studying death thing:
“We need Watson fellows more than anything right now. Traveling, crossing borders expands minds, opens hearts and makes us more understanding of other cultures and perspectives. In a lot of ways you are the ambassadors to all that is good about Americans…Yesterday a Watson Alum from the 90’s emailed me and shared something she posted. It resonated with me so I thought I’d pass it on:
‘In the absence of leadership we can believe in, we the people must lead. We must be our own hope, our own model of love, of kindness, of resolve, of resilience. We must be the answer that we seek, and the bright light for our children. It is not the time to sit back, but to stand up and lean into the gale force winds of the shadow of our darkest side. America, it is time to shine, shine, shine.’