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.
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.
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.