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

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.  

Goodbyes

The past few weeks of my life have been filled with goodbyes. A necessary part of graduation, each farewell serves as a reminder that my time in the place that I’ve come to know as home now exists in the form of memories and monthly checks to a student loans servicer. Many of these goodbyes have come with a gift that has inevitably fallen into one of three categories: (1) mementos of a shared experience, (2) travel-inspired gifts meant to welcome my coming year, or (3) books about death and dying. An interesting amalgam of my past and future, each gift is a reminder that this chapter is closing while the next is beginning and yet, somewhat paradoxically, the two will be linked by what usually characterizes a final chapter: death. 

Perhaps a bit more explanation is needed to justify what may seem like an otherwise macabre connection. As a Thomas J. Watson Fellow, I’ll be spending one calendar year outside of the United States while pursuing my project, “Dispatches from Death: Exploring How We Die.” Broadly, my project is concerned with the concept of ‘dignified death’ and how it comes to be defined by individuals and medical communities. Topics such access to and provisioning of care at the end of life, meaning-making in serious illness, and the influence of culture/religion/ritual in shaping views about death and dignity all fall under the purview of my project (of which you can read more about here).

My year will officially begin on July 1 when I board a one-way flight to Greece. For now, I’m trying to strike the balance between making plans for the year and allowing it to unfold naturally. One of the gifts that I received (which falls under the category of ‘Travel-Inspired’) reminds that finding the delicate equilibrium between the two will likely be an ongoing challenge. A deck of 75 cards that promises to help “discover the unexpected, wherever your journey leads,” it is designed to make you more appreciative of your surroundings through literal reminders to stop and smell the roses. While shuffling through the cards, I thought that perhaps I should try to guide my days by them, using each as a directive to ensure that I appreciate all of my time. I sometimes fear that the lack of normalcy caused by a year of travel will shift my focus towards attaining a sense of familiarity rather than enjoying the present, so the cards promised the perfect antidote. My momentary resolve was quickly dashed by the realization that I only have enough cards to live every 4.867 days by each one and while intentionally getting lost for one day might be nice, wandering aimlessly for 4.867 days is likely overkill. 

I think my compulsion towards the cards runs deeper than a mere desire to appreciate each day, instead embodying the greater desire to create order amid disarray by attaching significance to certain moments. Attaching significance to my days, through even inconsequential means, allows me to achieve some sort of structure over the time that has passed.

I’ve come to notice the ways in which passing time is counted without clocks or calendars. Some hospice organizations mark the time since a patient passes in phone calls to surviving family members. Calls occur at pre-determined monthly intervals, often until about thirteen months after the patient’s death, though I’m not entirely convinced family members have stopped marking the time since their loved one’s death by the final call, if they ever stop at all. A hospice patient that I was particularly fond of marked her moments by the delivery of the daily newspaper, once telling me that she maintained her subscription mostly to “feel normal.” The daily delivery of the paper was one of the only artifacts from her previous years as a passionate advocate to carry forward into her recent years characterized by stagnation and decline. Each new headline marked another day that she was still unabashedly herself despite existing in a profoundly altered way.

With each goodbye, I’m counting my time towards a year that will be spent exploring how we say goodbye. I’ve struggled in deciding whether to keep a blog, fearing that doing so would be akin to assuming a bully pulpit. I ultimately decided to create one after a friend suggested that the site need not be solely populated with my thoughts and experiences, but could also be a means to share and engage with the experiences and opinions of others. That felt right because even in the months leading up to my year I’ve been overwhelmed by the generosity individuals have shown me in lending their advice, connections, and personal stories. I am humbled by the year ahead of me and the experiences that will inevitably challenge my views of humanity, dignity, health, society, and, crucially, how they all intersect. Thank you for sharing in it with me.