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

Navigating the Valley

Since arriving in the UK, I’ve spent time in London, Bath, and Dorset County.  

My time in the United Kingdom can be best described as a whirlwind. Before I’d even stepped off of my flight at London Heathrow three weeks ago, I knew a shifting of gears would be necessary. Rather than arriving and immediately navigating to an unknown place to be greet by strangers, I headed directly to a house rented by my grandparents who would be visiting for about a week. No scrounging for dinner or awkward small talk upon this arrival—just the pile of clothes from home and known faces. 

Transitioning to the UK also marked a significant change for my project. Unlike Greece which is in the preliminary stages of palliative care development, the UK is the birthplace of many of the ideas integral to palliative care as commonly understood. 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. 

Ostensibly, this makes my work here ‘easier.’ In reality, I’ve struggled to navigate as I’ve felt pulled in many directions.

To put it into perspective just how many ways I could have taken my project in the UK, here is a list of all that I have done while here: 

  • Attended…
    • A Death Café 
    • The garden of a hospice for its open afternoon 
    • A poetry event put on by a public health commission 
    • Two conferences
  • Spoken with…
    • A poet who works with individuals with dementia and their caregivers 
    • Academics who work at the intersection of death and either art, humanities, philosophy, or education 
    • More than a handful of clinicians—doctors, social workers, etc. 
    • The fundraising and marketing team of a hospice 
    • Many more who I am forgetting to include 
  • Participated in…
    • A one-day conference on broadening the LGBT Health Care agenda 
    • A four-day conference on the social context of death, dying, and disposal 
    • A poetry workshop 
    • The Summer Fete of a hospice organization—both as a volunteer and attendee 
  • Plan to (in the few days before I leave)…
    • Interview individuals about the foundations of the Death Café movement 
    • Spend an afternoon with an author who is writing a book about death festivals 
    • Be given a tour and a chance to interview folks at the oldest hospice in the UK 
    • Enjoy the last bits of cooler weather that I’ll feel until I return to Europe in March 
  • Been struck by…
    • A cold! My first this year which kept me in bed for two full days
    • The first ‘valley’ of this experience 

Things have been… crazy. Though the list above may make it hard to believe, I’ve regretfully had to turn down a number of opportunities. I’ve struggled to write this due to the sheer amount of learning that has taken place in such a short amount of time. I could write an entire blog about all of my experiences over the past three weeks, but instead I am going to take this one in a different, more personal direction: the first ‘valley.’ 

Before that, here’s a touristy photo I took outside of Windsor Castle while with my grandparents

In the time leading up to the Watson, when people would ask me how I felt about the impending journey, I would overconfidently assure that it would be a series of ‘peaks and valleys.’ If I could keep sight of that, I would be okay. 

I’d been keeping sight of it, but now I’ve also lived it. 

Greece was an extended peak. The country is gorgeous, organizations were very willing to accommodate my work, I quickly made friends. It was the perfect place to start this trip—just different enough to force me to stretch, yet similar enough that I could relish in familiarity when needed. My time there bolstered my confidence in a big way. 

Then came London. 

You wouldn’t expect London—with American creatures comforts and its resemblance to Boston—to be the place where I first floundered. Oh, but floundered I did. 

I really can’t explain how it all unraveled. Maybe it was seeing my family for the first since I started the trip, maybe I was a bit too ambitious scheduling six straight days of conferences immediately after five straight days of ‘vacation’ immediately after making my first country change, maybe I should have been more deliberate in choosing a direction to take my project beforehand rather than figuring it out upon arrival. It was likely a mix of all of those things, but all I really know is that I spent a few days walking around with two main thoughts: (1) how can I sustain this for nine more months?; (2) what would happen if, on July 1, 2020, I returned to the Boston Logan International Airport, laid on the ground, and never got up? 

My two thoughts were irrational (though imagining the second often made me laugh), and I recognized in the moment that they were an indication that I was in one of the inevitable lows that this year would bring. There are so many ‘maybes’ that may have contributed, though instead here I am going to focus on what got me out of the low.  

I had previously scheduled myself to spend the week down in Dorset county, a coastal region of country renowned for its natural beauty. In Dorset, I would learn from a poet who hosts workshops for individuals with dementia and their caregivers, and then spend two days with individuals at the Weldmar Hospicecare Trust—one interviewing with people from their marketing, fundraising, and operations teams, the other volunteering at their annual Summer Fete. 

Since poetry, marketing, and fundraising are not worlds that I typically spend much time in, I was excited to see how they may enrich my project. Admittedly, I was also anxious to leave London. The city, while endlessly fascinating and always buzzing, enervated me.

Dorset, however, was the perfect antidote. Looking down different project-related avenues awoke a sense of curiosity whilst my understanding of my project and its boundaries expanded. I was also inspired by the sense of purpose and community palpable in Dorset County surrounding Weldmar. 

As I’ve come to learn, many hospices in the UK are funded dually by state and charitable contributions. Both are important sources of funding, though money from the charitable contributions is more versatile, allowing the hospice to provide services such as art therapy or day centers with social activities. The more funding that is brought in through charitable contributions, the more ‘value-added’ type activities the hospice can provide. Hospices also serve a particular area, only admitting patients who live in that region or have a GP that practices within in it. This puts the hospices in an interesting position: in order to provide all of the ‘value-added’ services (which can and do make a big difference), they need to be well-supported by the community; in order for the community to support the hospice, they must know about it, believe it its mission, and not just see it as a ‘death house;’ in order for community members to believe in the hospice, the hospice must be highly visible and rely on word of mouth praise regarding its service.

If that seems confusing, it’s because it is. I’ve interviewed many people that work in the field and still feel like my understanding is shaky. Put simply (and over generally) it means that hospices often need to put on events that make them visible to the public and raise money. One such event is Weldmar’s annual Summer Fete, where I was set to volunteer. Held at Weldmar’s hospice house, this traditional English Summer Fete comes complete with carnival-like games, music, and a grassy yard full of stalls selling various items. The atmosphere was completely jovial, my time there even more so. I spent the day chasing after balls from the Coconut Shy game where I was stationed with a new thought populating my consciousness, “This is the exact sort of atmosphere you’d want surrounding a hospice, and exactly where I needed to be.”

It’s difficult for me to put into words what exactly about my time in Dorset and with Weldmar changed my perspective. Certainly it was important for me to give time to time to get through the low. The closest I can come to explaining it is through acknowledging how special it is to be a part of something that is not only believed in by the community, but also believes in the community.

Upon returning to London from Dorset, I felt reinvigorated. I am grateful for this short amount of time in the UK; for all it has afforded me, personally and intellectually. It’s because of experiences like mine here that I am learning to look in the unexpected places. To trust the voice inside me that nudges, “open yourself and this will open to you.” 

The sky literally did open to me during one of the walks I took along the coast in Dorset county. It was a profound moment for me.

On Thursday I fly to India where I will be based through late November. Amazingly, I am about a quarter of the way through this year.  

I am going to do something good for you

After attending a writing festival in Possidi, Halkidiki, I returned to Athens to say some goodbyes, then boarded a flight to London.

Two days into my Watson year, I interviewed a funeral director in Athens. He was in his sixties, soft-spoken, and kept his wireless ear buds in for the entirety of our conversation. Directing funerals was not always how he’d imagined his life, but after the stress and dissatisfaction with his job in journalism proved unbearable, an ostensibly morbid career path suddenly became an attractive one. 

We talked for about two hours, enough time for me to get the full rundown of burial rituals in Greece, to learn why bones are exhumed only a few years after they are buried (often due to lack of space in cemeteries), and to have discovered that he views his job as more consultatory than macabre. His main role, as he explained to me, was to listen to the families and their stories, to help them in the first few moments after a death. I imagined that providing this sort of guidance came naturally to him since earlier in our conversation he fondly recalled his time in college reading horoscopes for extra money.

Grateful to have had such a good first interview when I’d hardly been in the country long enough to overcome jet lag, I asked if he could teach me how to say ‘thank you’ in Greek. “Eυχαριστώ,” he said, and then said three more times as I poorly mimicked, my mouth struggling to make the sounds corresponding with the letter ‘χ’ (a sound with no direct English equivalent). Once I came even remotely close to something that sounded like thank you, he smiled and explained that the translation means “I am going to do something good for you.” 

I’m actually not entirely sure if that translation is accurate—I’ve tried to google it to no avail—but it has nonetheless set the tone for my time in Greece (Greek friends, don’t spoil this for me if it is incorrect). As I was leaving, I asked if there was a place where I could dispose of the plastic water bottle he’d given me. Though the bottle itself was to go in the trash, the cap was to be collected and later given to an organization which, for every few thousand bottle caps that are returned, donates a wheelchair to someone in need. Then and there, I resolved to collect all of my bottle caps, promising to return them to him before I left. 

That’s how I wound up carrying a plastic bag around with me for the rest of the summer, diligently collecting each of my bottle caps and incessantly bugging those with me for theirs. Even mere hours into my time in Greece, I had the feeling that by the time I left I would have the strong urge to do something good for it.  

I write this post from the United Kingdom, where I arrived only two days ago. Coincidently, my first country change coincided with the beginning of the school year in the States and the first peaks of fall in many of London’s pristine parks, two evergreen markers of a summer’s pass. For me, change always catalyzes reflection, awakening a dual desire to hold onto my most fond memories from ‘the past chapter’ and also to write its last few sentences so as to begin the next. 

While in Greece, I conducted interviews with individuals working in all sorts of jobs related to palliative care, witnessed a number of religious celebrations with elements related to health and illness, volunteered with refugees in Lesvos, learned just enough Greek to sheepishly make it through basic exchanges yet confidently express gratitude, felt the magic of the island Amorgos, and filled 1.5 journals recounting my experiences.

There was a period of time where I struggled to synthesize all that I was taking in, often feeling as if the things I was learning lacked a cohesive narrative. In those moments, I questioned if my lack of understanding was a result of not doing a ‘good enough’ job or not ‘doing enough’—two anxieties common to the Watson experience. Ironically, it only occurred to me on the day I walked aimlessness through Mytilene, having purposefully chosen to accept the fact that I had nothing to do that day, did I realize that the seeming lack of cohesion was not a result of my own doing, but rather a reflection of the current palliative care landscape. Greece is in the very preliminary stages of developing a national palliative care strategy, so those involved in the field are grappling with many of the same question that I am: What constitutes effective palliative care provisioning? How does serious illness impact the individual, the family, the state? How do laws and rules (both political and religious) affect medical care? What matters most at the end of life?

Though it was not intentional, beginning Watson in a country at the preliminary stages of implementing a palliative care strategy has taught me many vital lessons about doing a Watson. For one, it’s made me resolve to go low and slow this year—to, as my favorite author Barry Lopez once wrote, “take measure of the bend through experiences.” 

I’ve learned to take measure equally from conversations with clinicians who voluntarily work weekends and nights to provide end of life care as I have from the traditional music that lands so well on my ears accompanied by dances that so graciously forgive my two left feet. From two-hour harborside dinners that couldn’t (and shouldn’t) be hurried by anything as from overcoming the challenges of interviewing with the bounds of a language barrier. From views outside of a train window that literally make my jaw drop. From people and places that I’ve come to love. 

Greece has got my number; it has since the first moment I stepped onto the tarmac after an EasyJet flight, looked out into a sky made pink by a sun lazily disappearing behind mountains and thought, “I’m here. I am really here.” 

There are a million good things I want to do for Greece, but for now I’ll have to settle with my returned bottle caps and an incredible heartfelt ευχαριστώ.

One of the many incredible sunsets I saw in Greece.

I am ‘on vacation’ this week, enjoying time with my grandparents. It is nice, albeit a bit odd, to see people I know again. I’ll be based in the UK through mid-September, attending a conference on the social context of death, dying, and disposal and learning from a hospice organization that does a fantastic job engaging the community where it is based. I leave the UK onward to India in about three weeks. 

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 themself 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.