Checkpoint – Month 3: October in Review

Disclaimer: I have in fact already arrived in Ghana but this was written on October 29th!

I’m starting to develop an emotional attachment to trains after teasing my roommate Sophia about her obsession for years. With the countryside of Lancashire flying by my train window as I head back to Heathrow Airport to leave for Ghana (and continent number 2!), I figured now was as good a time as any to reflect on the past month.

And what a full month it’s been. About halfway through October, I felt guilty over my lack of blog posting. But for the past two months, I have been hard at work on a literature review I was researching and writing with the International Observatory on End-of-Life Care. Any blog writing I would’ve done on what I was doing would just be a premature regurgitation of the eventual paper itself, and what fun would that be! You’ll just have to wait until (fingers crossed) it makes its way into a publication. However, I thought I’d use this space to speak about some of the questions and reflections that working with the IOELC has brought up for me over the past month. So, differently from my last two “checkpoint” posts, I will include some project-related reflections here as well.

Project Reflections

My building on Lancaster University's Campus!

For the past two months, I have been working with the global guru of palliative care research, Professor Catherine Walshe, co-director of the IOELC at Lancaster University. Together, we have been constructing a systematic review of the experience of engaging a death doula at the end of life. For those who are unfamiliar with the term, in short, a death doula is a non-medical personnel who works with a dying person and their family to meet the holistic wants and needs of the person at the end of life. Much like how the birthing doula evolved to advocate for and meet the needs of mothers who felt abandoned by the health system, death doulas are part of a growing “death movement” that focuses on the whole person and pushes for change in the over-medicalized death care system of the West. In a perfect scenario, the death doula adds a layer to the existing network of carers and fills in the gaps of care that result from a strained healthcare system. This definition is purposely vague as there is no one role of a death doula, but rather, they come as a blank slate, facilitating flexible, intimate, and individualized care based on each unique person they engage with.

While my review will describe the experience of those who engage with death doulas as well as the experience of being a death doula, there was one disparate but interesting line of inquiry that kept cropping up for me as I read paper after paper. Though not directly related to our research question, many journals discussed the skewed gender representation of death doulas to be almost all those who identify as women. In discussion of why this might be, there was a repeated refrain of a death doula as “daughter.” In other words, a death doula seems to be a possible answer to the question “who parents our parents?”

In lots of cultures, and some far more than others, reverence to elders and respect for your parents is upheld as one of the most important values. This theme comes out strongly as one nears the end of life; there seems to be this innate expectation that it is your children who will care for you, the same way you once cared for them. I have lots of fond memories of my mom reading me the classic American children’s book “I’ll Love You Forever,” which in hindsight should NOT be a children’s book. In the book, the mother talks about singing the same refrain to her son as he grows until at the end of the book, the son rocks the mother in her old, dying age and sings the refrain to her. Through books, TV, movies, and our own parents, we are taught this “expectation”. I’ve never questioned this concept because I, myself, don’t disagree but this agreement comes from a place of privilege. I’m lucky enough to have a relationship with my parents where I don’t feel ambiguous about caring for them. However, this is not the case for everyone and I can’t help but consider the additional caregiver burden that comes with feeling the responsibility to “parent” a parent with whom you did not have a relationship with. But the expectation remains. Moreover, I think about those who will never have biological children because of health issues or because they choose not to. Do they not too deserve to know what it is to be “parented” through the end of life?

This question – who delivers you through the end-of-life – has been an itchy scab on the skin of my project lately as I continue to assess the equity and accessibility of end-of-life care. In studying death doulas more intimately over the past two months, I agree that this extra companionship at the end can relieve some of this need to rely on having generations below you who will be automatically “responsible” for your care. However, as my research has shown, death doulas are employed one at a time and one person can’t simply meet every need. In the experience of many death doulas, they find themselves reaching for existing resources in their client’s communities, engaging in what is referred to as “compassionate community networks.” Perhaps they ask a neighbor to assist with walking the dogs or put out a call for dinners to be made, or groceries to be collected. Instead of the onus falling on any one person, death care becomes a community focus. This line of thought has brought me somewhere with my Watson project that I had previously not anticipated. I have been spending time recently doing a deep dive into the state of communities globally and the ways that Western framework and thinking has moved us out of communities while Indigenous and traditional thinking has always upheld the importance of this notion. As I move forward in my travels and enter into culturally more traditional spaces, I am very interested to see what this does to the definition of end of life care and how returning to some of these community tenants could possibly be key for creating more accessible ways of dying well.

Personal Reflections

My hosts Char and Rach, and host pups, Poppy, Penny-Flo, and Marley on a hike around the Forest of Bowland.

            With October being the last month I would be in the UK and my last month specifically in Morecambe and Lancaster, I found myself noticing many of the small things that made my time here incredibly special. One particular Thursday, my hosts and I piled their three dogs in their car and drove 20 minutes out of suburbia to end up on one of the most beautiful hikes through the Forest of Bowland. It was a beyond beautiful day – not a rain cloud in sight which for England feels like the universe giving you a gift – and my favorite season visibly being ushered in. While nothing in my mind can compare to Vermont in the Fall, I would give the Forest of Bowland a close second and it brought me immense joy to be able to see the leaves changing and the crisp cold being ushered in as September moved into the rearview. Mostly though, I was awed that so proximal to city and town life, there was nature this untouched. I remarked to Rach and Char, my hosts, that the oxygen literally tasted different. I think I had this typical college-aged notion in my head that after graduating I would end up in a city and who knows, perhaps I still will, but being in Lancashire these past two months has made me feel like I can never be too far from being able to escape to a place like the forest. The quiet, the beauty, but specifically the air, brought me an intangible sense of contentment and peace.  

Intermingled in this sense of calm I felt throughout October, there was the aging feeling of impending anxiety. I knew that soon enough I would be leaving for Ghana and would be “starting from scratch” in terms of settling in once more. There’s a certain exhaustion to the impermanence of travel that though I’ve grown used to I don’t know if I will ever grow comfortable with. The Watson has required me to become skilled at making a home if only for a second. At first, the most tiring aspect of this was constantly occupying spaces that aren’t entirely my own which in turn makes me feel like I must be “on” all the time. But as I settled into this feeling more this month, I realized that this is only an extreme example of what everyone my age is dealing with right now as we leave the comfort of college, of possibly still calling our parents’ house home, or navigating whether the apartments we rent in the new cities we move to are actually home or just where we are for right now – it gives me some comfort to know that all I am feeling during this year is an echo of what all my friends from Middlebury and beyond might be feeling too.

But just as I started to get used to this uncomfortable transience, the panic of saying goodbye and moving on began to set in. It was a shock to wake up only a few days ago and realize that a quarter of my time has passed. On most days, I feel my brain raging a battle between rest and action; between the sadness I hold at having to say goodbye to a place that has been home for three months and the beautiful friends I have made here and knowing it’s okay to also be excited for what is coming next; between settling in for the long haul that is this year and also panicking about how singular this opportunity is and how quickly it insists on moving.

For once though, I don’t feel as though this is something I have to learn to “fix” over this year. Holding space for both emotions – for sadness and joy, apprehension and excitement – feels important in the process of saying goodbye. The struggle I’ve found in this constant cycle of wanting to hold on to every little thing on this journey and not knowing fully how to say goodbye mimics a lot of the thinking I’ve been doing about memory and how memory is preserved towards the end of life. This month I’ve found memory preservation to take all sorts of forms – sharing my challah recipe with my hosts Rach and Char so that Rach could try challah for the first time (she loved it!), carving pumpkins with them on my last night so that way I could somehow participate even though I would be spending Halloween in Ghana, taking pictures of all the dogs on my way out the door. Though immensely challenging, I do think there is something important about letting go during this process and not lingering too long on what has been. While my whole being wishes I could stay in this home I’ve created for myself in Northern England, I know that I need to move on with my journey while still leaving space to carry the people and lessons with me. What an incredible thing to know that in this first quarter of my Watson I have somewhere that makes it so difficult to say goodbye; and what an insane thought it is to know that there are places all over the world I have yet to get to that I may feel similarly about in a few months time.