India was/India is

December was another month littered with travel. From Mumbai to Delhi, Delhi to Mumbai, Mumbai to Varanasi, Varanasi to Delhi, and finally from Delhi to Singapore, I can only hope that my refusal to eat meat will continue to counterbalance my existential distress over my carbon footprint. 

I’ve delayed writing this post for a while. It’s not been for lack of activity nor lack of stimulation. In the time since I penned the last update, I’ve shadowed a pediatric palliative care unit in Mumbai for a few weeks, attended a conference about the future of public health, travelled to Varanasi, and celebrated the holidays. 

There are actually numerous drafts of this post saved to my computer, each of which I scrapped for one reason or another—too much focus on the work, too much focus on my personal experience; too meandering, too pedantic; too much, too little. 

Writing has always been an outlet for me, a means for creation when comprehension fails. There’s a lot about India that didn’t make sense to me (many things that, in three months, would’ve been unrealistic for me to completely understand), so I wrote. A lot. However, regardless of how many words I spilled into Microsoft Word, each was spurned for its inability to cohere with the others and accurately convey my experience. 

It wasn’t until late last night as I replayed my memories in the liminal space between wake and sleep, did I realize that my time resists synthesis because it largely existed in fragments. 

India was a place that completely upended my understanding of palliative care. 
India was a place whose chaos and cacophony often left me enervated. 
India was a place that I stayed a month longer than I originally intended.  
India was a place whose current political situation is equally heartbreaking and terrifying.
India was a place where I made friends that continue to inspire me. 
India was a place that pushed my boundaries, that forced me to be more open and understanding. 

India was all of those things, but it also still is. It is a place that is nuanced, layered, and difficult to make sense of; it is a place I that miss. 

A picture of the River Ganges from one of the ghats in Varanasi

I spoke with an American physician who has worked extensively in India a few days after my arrival in September. He offered advice and suggestions for things to do near where I was staying, he also cautioned that the country could be extremely frustrating. Naïve (and nervous), I laughed at that, a reaction which lead him to explain that he’d once read a book about an Australian couple who lived in India for years yet, when boarding the flight back home, flipped the country the bird out of exasperation.

He assured me that he did not flip India the bird, though he’d come close. 

And so, I’ve had trouble writing because as I boarded my plane, I had the simultaneous urge to give India the middle finger and to run off the air bridge, out of the airport, and back to all that I’d started there. 

When comparing palliative care in the UK to Greece I wrote, “If my project in Greece was a matter of trying to locate disparate puzzle pieces to put together a cohesive image, my project in the UK is a matter of looking at a mostly completed puzzle and trying to understand how it was pieced together.” Continuing with the analogy, my project in India was largely a matter forsaking my fluency in puzzles to learn instead how to solve a rubix cube. A rubix cube is not inherently more difficult to solve than a puzzle, though it certainly is if you’ve only ever solved puzzles and have the cube thrusted into your hand with minimal explanation. 

The rules that govern are just different. 

To understand how palliative care is provided to individuals in India, I had to struggle to understand, among many many others things, why palliative care services take such a different shape than elsewhere that I’ve seen, how communal culture impacts medical decision making, why intersections of identity (which dictate, even if only subtlety, how care is provided in most places) really dictate how it is provided in India. 

An interlude before the punchline: the tiny Christmas tree that my friend and I adored with gifts

To be entirely honest, as I write this, I’m still not sure where all of these experiences leave me. I have thought a lot about something a psychologist I shadowed for a while said to me when chatting about the importance of palliative care, “There is not always a cure, but there is always an opportunity to heal.” 

As readers of this blog will know, the last two posts have struggled with the realizations that: (1) we all generally want the same things—to love, to be loved, to feel valued, to be free of pain and (2) that experiences, particularly unfamiliar or overwhelming ones, can be made manageable, easy even, when we are met with kindness and compassion. I’ve wondered out loud if I really needed a trip around the world to realize those things; to conclude at the halfway mark of the most immense opportunity of my life that we just need to do a better job being beings felt a little unsatisfactory. 

In my last few days in India, as I allowed a bit of time for rest over the holidays, I began to think differently. Rather than accusatorially asking myself ‘did I really need a trip around the world to realize those things,’ I began to question ‘why has a trip around the world spurred those realizations?’

I now wonder if this trip around the world has spurred these realizations because it’s the first time there’s been no pressure for an answer or a cure, no pressure to immediately understand all that is in front of me. Instead, it’s the first time I’ve been able to think deeply about curing’s elusive and enduring cousin, healing.

In some ways I’ve always been aware of the omnipresent opportunity for healing—intellectually, theoretically—but now I know it differently, know it as a part of my constitution rather than my consciousness. India, I believe, is largely to thank for that. 

I am spending a few days in Singapore for a short vacation before heading onward to New Zealand where I will be based through March. 

Sungazing

Last week I left Trivandrum for Delhi, then spent much of my first week here getting my feet back under me and recovering after falling sick.  

I feel a kinship to the sun over Delhi.

I’ll admit, it’s a weird thing to feel an affinity towards.

My infatuation began a few days ago while looking at the sky (leisurely sky gazing is one of the very few requirements of a Watson year). With my head tilted upwards, it suddenly dawned on me that I was staring directly into the sun. Even with sunglasses on, I’ve never been able to manage more than a glance, so the realization that I was not only looking at the sun, but had been so for quite some time, was a bit startling.  

It took a moment for me to realize that the sort of prolonged eye contact I was indulging in was made possible by the layer of polluted air kindly affording a few extra degrees of separation between the sun and myself.  

I’m sure it’s still not great for my eyesight to stare directly into the sun here, nor is the pollution going to have a net positive impact on my health, yet I found it hard to avert my gaze. While staring, it occurred to me that the experience of being a Watson Fellow is akin to being able to look into the sky and stare directly into the sun; the lack comfort, familiarity, and routine paradoxically providing a layer of protection, one that frees you to do and ask things that may otherwise glare too imposingly.  

Almost exactly one-third of the way through this experience, I’ve become a proficient sungazer. So much so that just looking no longer satisfies me. I’m eager instead to test limits, to see just how long I can hold the stare. The toll for looking directly into the sun is levied in hard questions: “What have I learned?” “How have I changed?” “In what ways do I want to shape the rest of this once-in-a-lifetime experience?” 

The most honest answer to ‘what have I learned?’ is that I framed my project incorrectly (and that it is not only okay, but wise, to acknowledge these sorts of things). As proposed, “through participant observation, interviews, and volunteer experiences, I [and my project] will explore how the notion of a “dignified death” is socially and medically constructed.” As written, this endeavor rested on two assumptions: (1) that palliative care, the medical lens through which I planned to approach the topic, was largely only concerned with end-of-life issues; (2) that notions of dignity and a ‘good death’ would vary greatly depending on culture and norms.

Both assumptions are only somewhat true. 

And continuing with the trend, the revision of my assumptions was not the result of engaging directly with my project how I had envisioned. Instead, it stemmed from doing something entirely basic and almost deceptively simple: just talking to people.

In the last few weeks that I spent with Pallium India, I worked with one of the staff members to coordinate a social media campaign aimed at inciting interest for World Hospice and Palliative Care Day. Together, we asked some staff members the question, “Why is palliative care important to you?” and then posted the response on Pallium’s social media pages. From personal anecdotes about a family member’s experience with palliative care to detailing the importance of the educational and vocational support programs provided to Pallium India’s patients, the answers revealed not just the range of personal experiences the staff had with palliative care, but the sheer breadth of how what is defined as ‘palliative care’ can be imagined. 

One of the responses to the question ‘Why is palliative care important to you?’

Even though palliative care is perhaps most often provided to individuals at or near death, to imagine it only as end-of-life care is to hugely discount both the vision and the existing work of the discipline (particularly in countries where the notion of ‘palliative care’ is still being developed and defined). 

First assumption, debunked. Now, onto the second.

In August, when feeling like I wasn’t ‘doing enough’ for my project, I decided to start asking individuals I met on the street three questions about death. Some may have noticed the dispatches from this project on the sidebar of this site; I’ve also written about the impetus behind it here.

I’m not sure what I expected when I started talking to strangers about death; however, what I didn’t expect was that so many of the answers would be so similar. That, when answering the questions, people would mostly speak of their desire to live life fully, to feel loved, and note that they do not fear death itself, rather the potential of dying in pain. 

One of the posts displaying an individual’s answers to the three questions about death

So, while it’s true that cultural and social norms may dictate how we understand and express ourselves surrounding serious illness and death, these differences don’t equate to radically divergent emotions or desires which underpin those experiences. 

Second assumption, also debunked. 

This raises an important (and hard) question: am I really going around the world to conclude that we all generally want the same things—to love, to be loved, to feel valued, to be free of pain?

Maybe. It’s too early to tell. But it’s not yet too late to allow this insight to remold my experience. 

Instead of asking how culture and norms impact approaches to death and dying, I’m beginning to ask how, within different contexts, can serious illness and death be approached in a way that upholds those basic desires that we all seem to share. I’m also pondering how this discipline of palliative care, whose conceptualization now has a certain air of ephemerality to me, can be harnessed to promote compassion and dignity. 

I was recently asked how the experience of being a Watson Fellow has changed my own attitudes towards death. Like a palliative care clinician when asked if they have completed their own advance directives, my initial reaction was to take the defensive, to interpret the question as an accusation that my lack of personal forethought on a topic that I spent most of the day engaging with is an insinuation of my own intellectual ineptitude. 

After taking a moment to lower my guard, I said I wasn’t sure exactly how my thinking has changed but that life as a Watson Fellow is sort of like dying every few months. With each country change comes new a life—new cities, languages, cultures, cuisines, experiences, and people. It’s a privilege, this making and remaking. It can also be exhausting and, at least for me, a bit heartbreaking to tear up roots so often. 

I am sustained, however, by all the ways I’ve grown as a result of staring directly into the sun. 

Today is Diwali (Happy Diwali!), so I will be spending this week enjoying the festivities and doing a bit of traveling before beginning ‘work’ next week.

(Not so) Peripatetic Palliation

I have been based in Trivandrum, India since the last update. It has been three weeks since I arrived, marking the longest that I’ve stayed in one place since beginning my Watson exactly 101 (!!!) days ago. 

It feels like it’s been forever since I’ve written, and that’s because in some ways it has been. 

I wrote my last update from London, drafting the post in a swath of hostel common rooms while inevitably sipping some sort of bitter black tea. Now, half a world away from all of that, I write this update from India, having drafted this entire post in intermittent bursts seated in the same spot while pondering why tea tastes so much better on this side of Dubai (the sugar!).

It’s been about three weeks since I arrived and started working with my current organization, the longest amount of time I’ve had a semblance of routine since beginning this journey some three months ago. When crafting my Watson proposal, most of the research I did about palliative care in India seemed to point back towards one organization: Pallium India. At the time, I sent them an email expressing my interest in learning from them, they responded by indicating their receptiveness and experience with international visitors. Life worked its mysterious wonder and exactly a year after initial contact with Pallium, I was sitting inside of its Trivandrum office.

Pallium India is located in the state of Kerala in the south of the country. For many reasons that I will not list here, Kerala is quite different from the rest of India, so much so that some have jokingly welcomed me to the ‘Country of Kerala.’ It’s estimated that less than 2% of patients in need of palliative care in India actually receive it, but Kerala, a state with 3% of the country’s total population, boasts over 90% of all palliative care programs in the country (1). Even though I was aware my exposure to palliative care in this southern state would be far from a representative sample, I was interested in learning more about what has been dubbed ‘The Kerala Model,’ a model of development characterized by the creation of a strong social infrastructure, and particularly its impact on palliative care development (2). (Over)Simply put, as it applies to palliative care, the main components of this approach rely on community mobilization and engagement, involvement of local self-government institutions, and attempts to incorporate palliative care into primary care.

Having accommodated so many international clinicians in the past, it’s often assumed that I am a doctor or a nurse even though I am quite far from either. Since being a Watson Fellow is not necessarily something that can be described succinctly, I’ve settled on saying that I am studying palliative care anthropologically. It’s not entirely true, and I take some issue with the label, but it’s the most accurate way to describe what I’m doing quickly.

Perhaps that raises the question: what have I been doing? For the better part of three weeks, I’ve been learning as much as I can from the folks here. I’ve joined clinical teams on home visits, went for rounds on the inpatient unit, and interviewed just about every person working in or around the organization. Prior to arriving, I had read enough about their model of delivering care to understand how the proverbial machine worked, so I endeavored to use my time here to learn how all the pieces and parts come to function in unison.

A picture of one of the Pallium India home care vans I took during a day of home visits.

After all I’ve learned here, I may be better off asking ‘What isn’t palliative care?’ than ‘What is palliative care?’ A 2017 Lancet Commission Report describes palliative care well through one of the five key messages it identified for global access to palliative care and pain relief, “Alleviation of the burden of pain, suffering, and severe distress associated with life-threatening or life-limiting health conditions and with end of life is a global health and equity imperative” (3). Notice in this definition that both life-threatening and life-limiting health conditions are separately acknowledged. 

Recently when talking about my work, someone affiliated with Pallium asked, “When speaking about your project, you mention palliative care and death, so which is it about?” A few months prior I think I would have quickly come up with an answer that may have made it seem like the overlap was entirely intentional and very well-reasoned. Instead, I answered honestly, “You know, I sometimes have to laugh at myself because I confused end-of-life care and palliative care in my proposal, using the two synonymously when really they are quite distinct. I think there is a tendency to confuse, and I am guilty as charged.”

Watson has made me bolder, more willing to be vulnerable.

It common to confuse palliative care with end-of-life care, and astute observers will notice that I have here at times. I am far from alone in doing so. Even as someone who worked in a department of palliative care for two years, my conflation is largely subconscious. True that illnesses which are life-limited are often also life-threatening, but to assume that palliative care should only be available to that subset of individuals is to deny many more much needed care. I hypothesize that this occurs because in countries like the US, where for most people (but certainly not all) aspects of life that may be impacted by illness such as employment, education, and rehabilitation needs are taken care of by established support systems, the services rendered under the guise of palliative care may only be needed at the when facing the end stages of a life-threatening illness. It can also be argued that there is just not enough awareness or development of palliative care provisioning to have the field understood as holistically as it endeavors to be. Either way, it was an Indian palliative care physician who recently told me that he had to help lobby tirelessly to make sure the language surrounding palliative care included both life-threatening and life-limiting health conditions, explaining that “clinicians from other countries just have not seen the scale of suffering here.”

It is tempting to write an entire post delving into just that, exploring the heartbreaking magnitude of need that I have witnessed. Certainly, it would be an appeal to pathos, and perhaps because of that the most effective way of convincing others of the importance of palliative care. Yet, I have always felt a great reticence in showcasing any suffering that is not my own. Instead, I will describe one of my most impactful experiences I’ve had on my year thus far:

I am on a home visit and see a woman with a stomach tumor so large I initially thought she was pregnant. Despite the rural location of their home and the financial constraints under which they live, she’s been to a number of hospitals and had a number of procedures done. I don’t speak a word of the language, but I don’t need to in order to sense how much distress she and her family are under. The clinical team rushes around me; I can’t take my eyes off of her. All I can think is ‘I am here with you,’ then do my best to allow every part of myself to be in those moments with her. I can feel the tears welling—are they mine or hers? I can’t be sure. I don’t cry, but as I leave, I met her eyes giving a soft smile and a small nod. 

Did I make any difference? I don’t know, but no longer think ‘making a difference’ is what really matters. I think what matters is being a human; is embracing all of the pain, the tragedy, and the joy that comes with it; is being unafraid to touch others with our humanity and to allow ourselves to be touched theirs. 

I decided to extend my stay with Pallium India for another week, meaning I will be based in Trivandrum until nearly the end of the month. With this extra time, I’ve been working on a social media campaign for the organization that will form the substance of the next update to this blog. 

(1) “Models of delivering palliative and end-of-life care in India.” Suresh Kumar, 2013. https://pdfs.semanticscholar.org/3fe1/388e88d07934f1215a33cb79fd206d914545.pdfd

(2) More can be read about the Kerala Model can be found in this article: “Growth and Success in Kerala.” Alexandra Brown, 2013. The Yale Review of International Studies.

(3) “Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report.” https://www.ncbi.nlm.nih.gov/pubmed/29032993

Collecting Moments

Since the last post, I’ve returned to Athens from Mytilene, then travelled to two islands in the Cyclades: Amorgos and Tinos.

When I arrived at the airport in Mytilene a few weeks ago for my departure, I was met with an odd question by the ticketing agent. “Athens,” she began, “why would you go there in August?” 

Athens is somewhat of a ghost town these days. Hoping to escape the unrelenting heat, individuals who can afford to take a vacation often do so for most, if not all, of the month. Many go to the islands which are much cooler than the mainland, offer a near constant sea breeze, and demand at least one swim per day. Though I’ve spent my fair share of time on these landmasses in the Aeagan, much to the ticketing agent’s dismay, Athens has been a ‘home-base’ in between stops. 

I was aware that the August holiday would make it difficult to schedule interviews with individuals from the medical community, so I filled the month mostly with cultural and social experiences. One such experience was a trip to Tinos for August 15th. August 15th marks Dekapentavgoustos, or the Dormition of the Virgin Mary, one of the most important Greek Orthodox feast days. The Virgin is believed to have ascended to heaven on that day, and pilgrims come to the island to pay homage to a Holy Icon which represents the main source of connection between individuals and the Virgin Mary. On the 15th, the Holy Icon is led down from the church in a grand procession, with individuals lining up many hours before it begins to guarantee a chance to touch the Icon.

Individuals lining up for the procession on the 15th

Pilgrims pray intensely to the Virgin Mary for compassion, good health, and healing and, in a demonstration of pure devotion, some even crawl from the port of Tinos to the Church about 1 kilometer immediately upon their arrival. I wanted to observe the day to better understand the role that faith plays in the experience of serious illness, particularly in the instances in which individuals believe to have been cured. 

I arrived on Tinos August 14th, giving myself a day to explore prior to observing all that was to come. Earlier in the week, I’d finally visited some of the museums in Athens I’d neglected previously, so it felt natural to spend the day at the Cultural Foundation of Tinos Island. While there, I was captivated by a mirror inlaid within a double-panel window frame with the words ‘Touch here’ written in white letters across the bottom of each side. 

Obliging the command, I placed my hand over the text, an action which resulted in a loud click and the illumination of the mirror in front of me. Startled by the bright blue, idyllic image that overtook the space where my body stood, it took me a second to register what had just happened. I pulled my hand back and, just as quickly as my imaged disappeared, I was met with it once more. 

An image of the mirror captured amid illumination.

The motivation behind the piece was political, though I gleaned a very different meaning. A few days prior while exploring the Benaki Museum of Greek Culture, I was taken by a painting entitled St. Nicholas and scenes from his life. As the title suggests, the painting highlights pivotal scenes from St. Nicholas’ life by positioning depictions of them around a rectangular rendition of the saint himself. I don’t know enough of Christianity nor St. Nicholas to unfurl the narrative those imagines undoubtedly wound, though I do know that when I take stock of the pivotal moments in my life, they manifest in a similar way—a series of moments, seemingly disparate yet at once connected, upon which my own likeness rests.  

My predisposition to thinking of moments was perhaps a result of the recent research I’ve been conducting into the Greek Orthodox view of death and euthanasia (“Prolonging life or hindering death? An Orthodox perspective on death, dying and euthanasia” is great reading on this subject, if interested). In brief, death is seen as the rapture of the psychosomatic unity of body and soul, though the exact moment at which this occurs is unknown. Despite the mystery of that moment, there is little interest in knowing exactly when it occurs so as to not profane its sacred character. The moments surrounding death are seen as the most important in a person’s life because they are when the soul is judged and can repent for its sins. Thus, efforts which may hasten those moments (such as euthanasia when used to ‘cut the life short’) ultimately impede a person’s ability to engage in those all-important final seconds.  

Looking at the artwork in Tinos (whose name I regretfully didn’t write down nor can remember), I couldn’t help but wonder if that was what the final moments according to the Orthodox faith are like. Do they occur in flashes or together like a dream? Is the focus retrospective or prospective? Does life ‘flash before your eyes?’ 

Once the notion of life flashing before your eyes entered my consciousness, I began to quickly tap the display, wondering if this is what it feels like to have that happen—a sequence of bursts so rapid that it’s hard to distinguish the start of one from the end of another. 

Even though I was memorized, a woman who was also viewing the exhibit was less enthused, shooting me an annoyed glance when my tapping bordered on obnoxious. Taking the hint, I removed my hand, allowing my physical life to flash back before my eyes. 

I stared at myself for a moment. 

Since departing for Watson, I’ve sometimes looked into the mirror and felt like I didn’t recognize the face staring back at me. This may be partly attributed to the drastic haircut I received approximately 24 hours prior to my departure—the first diversion from the one-length, blunt cut since I was seven years old— but I think it is more so emblematic of the struggle I’ve felt in synthesizing the moments that make up my life now into the collection of moments that make up my life as I knew it. 

Disjunctive feelings are not uncommon to the experience of illness (or, as I’ve gleaned from my newfound obsession with travel-based literature, when an individual immerses in a new culture), though I’ll omit a thorough discussion. Rather, I believe the first few lines of Susan Sontag’s Illness as Metaphor illustrate the point,

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” 

The understanding provided by our culture, traditions, or religion can help make sense of the moments that we are called to venture into previously unexplored kingdoms. Much of my work throughout the past month has been a whirlwind of witnessing first-hand how individual come to make sense of these forced ‘kingdom crossings.’ In the refugee camps on Lesvos, where so much more than an ocean separates the texture of individuals moments, something such as continuing to work barber may act as the keystone in the arch spanning two seemingly disparate places. A woman that I met in Tinos during the procession of the Holy Icon described her yearly pilgrimage as a way of honoring the good health miraculous granted to her after facing a serious illness thirty years ago—a time full of chaos and disruption in her life render sensical by the grace and compassion of her faith. 

To be entirely honest, I’m not always sure what to make of all the moments I’ve collected over these past two months. With about a week left in Greece, I feel pressured to collect my memories and experiences—to name them, organize them, wrangle them into something that even partially conveys the wonder of my time here—yet, I suspect that doing so may only profane their sacred character. 

This post hardly scratches the surface of all of my thoughts, feelings, and experiences since the last update. For example, glaringly absent is any mention of the few incredible days I spent camping in Amorgos. I depart for the United Kingdom next Tuesday, and plan on using much of the week to reflect on my time here, though I will make one small trip up to Thessaloniki to attend a writing festival where a piece of my fictional prose is being featured.

Dignity, Guilt, and Google Maps

Since the last update, I’ve settled in the town of Mytilene on the island Lesvos to complete some volunteer work.

I purposefully booked my accommodation in Mytilene because it boasted a central location, pristine sea views, and plentiful terrace space. The pictures of the place confirmed that I’d indeed be able to drink a morning coffee while admiring the Turkish coastline; Google Maps confirmed that was a mere two kilometers from the town center. I finalized the reservation without hesitation. 

This is not another post about the existential distress I feel as a result of Airbnb (though an entire post could be dedicated to the complicated, often slum-like housing market that sprouted to accommodate the influx of short-term volunteers on Lesvos), instead this will be a post about dignity, about not checking the elevation change feature on Google Maps, and about guilt.

Where to begin? 

First, with a picture from the beach ~5 minutes from my home. The landmass near the horizon is Turkey.

Since winning the Watson, I knew that I would want to take time in each country for a bit of volunteer work. Growing up in the heyday of the ‘Cleveland Renaissance,’ I was indoctrinated to believe that places change when people change them, for better or for worse. I am not naive (nor arrogant) enough to think that a week or two of volunteering will profoundly alter a place that barely spend fortnight in, but I do see the importance of dedicating time, even if only a little, to a greater good. 

I am spending a little over two weeks volunteering with an organization that coordinates yoga and sport activities for refugees. All yoga takes place in the ‘Yoga Shed,’ a rectangular structure with an exposed frame of cylindrical metal pipes shaded with a tarp roof, while many of the sports take place in an old warehouse retrofitted with mismatched foam play mat tiles and handmade, plywood storage units for the clothes and equipment that are borrowed for each class. My role involves providing support to the long-term teachers here. Some days that means partaking in a women’s yoga class, other days a men’s muy thai, and, every so often, providing babysitting services so mothers may fully enjoy the experience of a class. One of the organization’s main goals is to dignify individuals who live under the indignant conditions of the camps here. Though I certainly prefer assisting with deep breathing to serving as a punching bag in muy thai, in each class I witness this goal being fulfilled as the number one rule (‘Have Fun’) is diligently obeyed. 

Any glance at the front page of a major newspaper will reveal a blindness to the indignity rampant in refugee camps (or detention centers in the US), but our reaction to an ill-fated diagnosis received by a loved one confirms that this blindness is only partial. Throughout my time here, I’ve come to believe that dignity is related to value, and that one of the greatest ways to help dignify another is through showing them that they are valued (certainly, the opinions and actions of others are not needed to cultivate a personal sense of dignity, though I believe they can be quite influential in doing so). Outside of the work done by NGOs, for refugees, the bottom rung of Maslow’s hierarchy is, at best, only sloppily guaranteed—a direct reflection of how little they are valued in the eyes of the state. However, when a loved one is diagnosed with a serious illness, the inclination is often to drop everything and play our part in the epic drama of navigating medical institutions, coordinating treatment, and providing support. We show our belief in the other’s value by happily serving as a personal Uber, DoorDash, or TalkSpace service.   

The relationship between dignity and value helped to resolve a paradox that has emerged in my research. Many individuals in Greece have told me that a good death would be a sudden one, yet many more have also told me that it is important to ‘do everything to delay death.’ If the goal is to die suddenly, I’ve wondered why everything should be done to extend life. When I’ve probed as to why the sudden death is the preferable one, the answer has almost always been so as to avoid suffering. The rigors of treatments involved with ‘doing everything’ are seldom synonymous with alleviating suffering, ergo the paradox continues. After pondering this seeming incongruency, it occurred to me that ‘doing everything’ may be a way of showing someone they are valued. A way of affirming that their longevity should follow lockstep with the impact they’ve had on our hearts, even if it means undergoing treatments or procedures that assure against a sudden, or ‘good,’ death.  

Organizations involved with spreading awareness about palliative care often work to revise the notion that valuing an individual involves bestowing things with a perceived high value upon them (expensive treatments, endless tests, a myriad of consultations with all of the ‘best’ clinicians). Instead, these organizations promote the idea that individuals can also be valued when we do our best to preserve the things that they value. Some individual can, and do, value receiving intensive treatment to delay their illness, though many more place the greatest value on maintain a high quality of life, however that may be defined. 

Altering this perception of value may seem simple, intuitive even, but rewiring cultural thinking about value and dignity is a task rife with Sisyphusian frustration. At the end of the day, I think that most people simply want to believe that they did the best that they could to honor their loved one. For Greeks, I’ve often heard that many feel it is their duty to take care of their parents in old age as repayment for the care they were provided as a child. The dedication with which this duty is approached is truly astonishing—I’ve anecdotally heard of individuals who, for many years, paid meticulous attention to osentibly minute details such as room temperature to prevent the worsening of a parent’s condition.

A surefire recipe for languishing guilt is to agonize over whether you did ‘the best’ that you could to dignify another. To me, it seems natural and somewhat hopeful that this is a source of anxiety. Naturally, we all hope that our best was commensurate with the way we valued the other; hopefully, our agony is a sign of how deeply we wanted to communicate that value. Natural and hopeful as it may be, I recognize that languishing guilt is corrosive if held for too long. During my volunteer orientation, one of the experienced coordinators sternly instructed us ‘not to be guilty.’ Undoubtedly, this advice was a result of his own experience with the aftereffects of corrosive guilt. But, even with that advice in mind, in the face of this too-huge world confronted with the too-huge prospects of death and despair, we flounder, we bargain, and we feel immense amounts of guilt. We, or at least I, have the somewhat obsessive inclination to take measure of the uneven cosmic scale: he got cancer, she was born in a war-torn country, they tragically lost their mother; I am healthy, I was born in the US, I am at peace with those I’ve lost. How can this scale ever possibly near balance? 

It is precisely this sort of weighing that the advice to ‘not be guilty’ was targeted towards. Even still, it’s difficult to stop. Often as I walk home, I can’t help but indulge. Though the trip from the bus stop to my accommodation is indeed the promised two kilometers, what was not obvious at the time of booking (because I neglected to look at the terrain change) was a steep, 120-meter elevation gain during the last 800 meters of the walk. While I make my way up the hill—huffing, puffing, often needing to stop and catch my breath—I sometimes have the urge to run. The neighbors and stray cats watch this scene with great confusion: a young, very obviously not Greek girl, already dirtied from a day of sport, makes a beeline up the street whilst her bag thrashes against her back. They probably wonder what I’m doing and, to be honest, I wonder the same thing. Maybe this is my way of dealing with uneven cosmic scales, of trying to communicate the innate value I see in others, of trying to show that I am striving to do the best I can. Or, maybe, this is my way of grappling with not feeling guilty.

A view from the midway point of the hill, taken during one of my walks home in the evening.

I will be spending about one more week in Mytilene before heading back to Athens for a few weeks. In Athens, I will begin to tie up some of the loose ends of the research I’ve been conducting over the summer before partaking in a few festivals near the end of the month.

Tourists and Travelers; Voyeurs and Witnesses

I spent the first two weeks of my fellowship in Athens, Greece getting a feel for the country and the palliative care landscape. I interviewed at a funerary, was kindly given a tour of a palliative care unit, attended a healing circle, and have made a few friends who have gracious enough to show me the city through their eyes.  

During my interview for the Watson fellowship I was asked a question that stopped me in my tracks. The interviewer leaned back in her chair, then coyly posited, “Don’t you think your project is just a little voyeuristic?”

I remember feeling my face grow red as I thought, ‘Voyeuristic? Well, I am proposing a project that seeks to explore one of life’s most intimate moments… Is that voyeuristic? Oh god…’

She must have seen the panic wash over me, quickly offering that perhaps all of anthropology is just a little voyeuristic. I laughed, agreeing that anthropology may be a little voyeuristic, but clarified that I thought the attitude with which the work is an important indicator of its intrusiveness.

In the months following the interview, I thought often of that question, pondering the ways that I could ensure my actions were not voyeuristic. I posed this question to many people—academics, clinicians, peers—eventually concluding that it is both attitude and intention that decide whether someone is bearing witness or being voyeuristic. The former characterized by authentic, present participation, while the latter by selfish motives and/or being removed from the moment as it occurs. 

This question has been on my mind again as I’ve started to develop a feel for Athens. It’s a place that shouts at you. The graffiti found at every corner is an omnipotent reminder of the city’s pride, pain, and temperamentality. The blazing sun and nearly constant blue skies make no room for subtlety. Though I don’t always understand the graffiti, nor the chatter going on around me, I can often sense the passion with which it is delivered. 

The view from a street in the Plaka neighborhood

If you can’t understand a shout, does that make it a whisper?  An invitation to lean closer and open yourself to what may not be easily comprehended? 

I think it does, so I’ve been trying my best to listen carefully.

There are some messages that need not be deciphered—they shout with the intention of being understood. One such message confronted me from the moment that I went to check into my Airbnb: 

Later that evening I asked some local friends about the message, hoping to better understand the impact that Airbnb has had on their city. They explained to me that in the past few years units in neighborhoods close to the city center have been turned into ‘Airbnb Apartments,’ spaces where no Athenians live, but are instead only rented out to tourists. This, coupled with an increase in tourism to the city, has led to a rapid increase in the price of rentals. An increase so great that citizens are leaving the neighborhood where they may have longed resided or are being forced find new ways of making ends meet. 

After hearing this explanation, I was overtaken by guilt. Just two weeks into the year, I have realized that much of my project will be made possible by the willingness of strangers and places to open themselves to me. Athens and its people have been exceptionally willing, so it feels important to return the favor; important to leave a positive (or at the very least net neutral) mark on the city. Important to not be a voyeur. 

I confessed that I had unknowingly booked an ‘Airbnb apartment’ for my time in Athens. They reassured that it was okay since I was acting as a ‘traveler, not a tourist.’ Though their consolations were appreciated, I ended up switched my accommodation to clear my conscience of the negative contribution.

The distinction made between a traveler and a tourist reminded me of that between a voyeur and a witness. The traveler distinction had been bestowed upon me because, as it was explained, I was making an effort to venture outside of the area immediately surrounding the Acropolis, to engage with the city rather than merely visit the tourist attractions and was attempting to be self-aware in my actions. Crucially, I was making an effort to be here rather than just see all that is here. 

The traveler/tourist distinction also brings to mind something I often heard from the family members of the hospice patients I worked with. They spoke of how they were comforted by the ‘home-like feel’ of the place. Though the hospice certainly had many ‘home-like features,’ at its core it was still a place where care was to be provided to individuals—a purpose more typically attributed to a hospital than a home in contemporary US culture. The palpable difference in energy, in my opinion, was a result of the meticulous attention that was given to ensuring that each individual felt welcomed and care for (beyond just medically) during their stay. Individuals were travelers at the hospice house, not merely tourists in the medical world.  

When I asked a doctor last week what would be considered a ‘good death’ in Greece, she surprised me by answering that every death used to be a good death. She explained that individuals used to die at their homes, surrounding by those important in their life. If they needed to be cared for, it would have also been at their home and again would have involved the people most important to them. No tourism whatsoever. 

This has changed in the last ten years, however, with the decline in village/neighborhood life and flight of young people from the country in search of suitable work. More people are now dying in hospitals or away from their loved ones. Just as I am toeing the line between being a traveler and a tourist or a voyeur and a witness, a similar navigation is being performed by the medical community in defining the emerging field of palliative care.  

When given the choice (in literal or metaphorical journeys), I believe that most people would prefer to be a traveler rather than a tourist. So, I wonder, why is it the case that there so many tourists and so few travelers? 

I think perhaps it is because feeling a place requires an opening, and eventual breaking, of portion of your heart. To be a traveler in a place, to get to know it intimately and allow it to know you, demands that you make yourself susceptible to being changed by it. In my attempts to not be voyeuristic, I’ve been changed by experiences I’ve had shadowing clinicians in the States just as I have in the two short weeks I’ve spent in Greece. Bearing witness, whether it be to an individual suffering in an intensive care unit or to the hum of daily life in the Athens, is often when I feel the strength of our shared humanity most strongly and pain of life’s indiscriminate misfortunes most acutely. 

To borrow (and slightly alter) a quote by Maya Angelou, the price of being a traveler is high, but the reward is great. I’m paying the price in teary, indefinite street corner goodbyes and bouts of existential distress over realizations regarding just how much privilege the eagle on the front of my passport holds. Yet, the reward of being able to fully experience the beauty of this place and its people is immense. 

In the ephemeral spirit of the Watson fellowship, my travel plans have changed slightly. I’ve spent a few days enjoying the natural beauty of Meteora and was supposed to make my way towards the islands for some research. However, an opportunity opened on the mainland to further bolster my understanding of how the country’s palliative care field. Island life can wait a bit longer.  

On the precipice of being vaulted

Last Wednesday I said goodbye to my family in Ohio, then boarded a plane for Boston. Beyond the cost-savings associated with flying internationally out of Boston Logan versus Cleveland Hopkins, it felt right for Massachusetts to be the penultimate step before launching into my Watson Year. 

There is a certain degree of irony in this for me. It was only three years ago that I left my first year of Wellesley College after what felt like months under duress. Though I had made great friends—many of which remain my closest to this day—I spent the year feeling entirely disconnected from the environment around me. This feeling was so profound that there were often visceral pangs of not belonging…the same pangs that I now feel when thinking about the weekend bike rides I took on various paths in the Greater Boston area or the communities here that I’ve come to deeply know and love. 

Each time I’ve felt this way, a quote from Jack Kerouac’s On the Road has come to mind: “What is that feeling when you’re driving away from people and they recede on the plain till you see their specks dispersing? – it’s the too-huge world vaulting us, and it’s good-bye. But we lean forward to the next crazy adventure beneath the skies.” 

Bittersweet, inevitable, and largely uncertain, this feeling comes with no promise that you will be vaulted into a place where it becomes equally difficult to say goodbye.  

I believe the feeling described by Kerouac is a near opposite of what the social work researcher and author Brené Brown dubs as ‘the lonely feeling.’ (On the Road, Brené Brown’s Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone… There’s clearly been a theme in my recent reading). While I imagine Kerouac’s feeling to be partly a result of the sadness associated with leaving a place where you feel sustained, Brown explains that ‘the lonely feeling’ is one of disconnection to those around you, to the place that you are in, or to yourself.

I’d never thought much about being disconnected to self until I struggled in the aftermath of a torn ACL—often feeling like the body that I was now in was not that one that I had always known. Illness and injury have the ability to make all that was formerly tacit suddenly taxiing, while also altering the range of possibilities that may have perviously informed an individual’s way of life. My experience was not unique, in fact the philosopher Havi Carel has written an entire book entitled Phenomenology of Illness which explores how an individual’s body, values, and world can change in serious illness or injury. Essentially, she explains how our own bodies can come to feel unhomelike. 

Phenomenological thinking has also been used to describe the experience of grief. The beavered individual’s world is made unhomelike by the absence of someone that came to underpin so much of it. Time marches forward while everyday experiences take shape in unfamiliar ways. 

The remedy phenomenologists offer to this disconnection is a remaking of the individual’s world, a refamiliarization so that the taxing may once again become tacit. One of the most powerful ways in which this can occur is through a shifting of personal narrative. Many individuals have written much more eloquently and persuasively about this than I will here (if interested, Arthur Frank’s The Wounded Storyteller is a good starting point), but the crux of most of their arguments is that in telling and revising our stories we can reestablish connection to them, and therefore to ourselves as well.

As I type all of this, I am acutely aware of how my temperament, biases, and culture have made this way of thinking the one I identify with most. I tend to favor things that are analytic and explanative; theories that would receive credit if applied in a blue book examination. This has been challenged to a certain extent this year as I doubled down on my interest in zen meditation, but I’d be remised if I didn’t mention that a large part of my attraction to phenomenology is because, in my estimation, it intellectualizes many Buddhist and contemplative insights. 

In the ‘Getting it Right?’ guide supplied by the Watson Foundation they call on us to ‘find new truths that work for [us]’ through revisiting the assumptions, stories, and voices that guide us and trusting ourselves to ‘build new and resonate narratives.’ Beyond being open to the possibility of a changed perspective, I imagine that part of finding these new truths is accomplished through finding new ways to connect to place, people, and self. 

With the year officially beginning later this evening, I am both excited and apprehensive. I expect that there will be moments intense disconnection as the language I’m used to crafting my stories in is challenged. But I also expect that the process of revisiting and revising my worldview will lead to a depth of emotion, insight, and connection that is impossible to imagine now. 

I’ve said all of my goodbyes; I’m on the precipice of being vaulted. Time to lean forward to this crazy adventure.