Checkpoint - Month 8: March in Review

One of the best views of Rangitoto, a volcano just off of Auckland.

Another month has come and gone. My heart is dropping slowly to my stomach while writing this piece because I can officially count on only four fingers the months left of my Watson. Even as the fatigue of constant movement and travel has felt stronger as of late, I still feel quite resistant to “The End” whatever that will mean when it comes, and of course, will not likely be an end but a new beginning. This month has been one of adjustment which is odd to say because it was my 8th month of travel and you’d think I’d be adjusted by now but more on that in the personal reflections section. It’s been a month of balancing Watson work, exploring New Zealand, and the demands of “Real Life.” With so much happening, I have found little time to individually share my experiences in separate blog posts so instead I will put it all here now and apologize for the length. I have so many thoughts, and so little time, and my notes app is sick and tired of my wandering thoughts as I explore Auckland.

Project Reflections

Introducing the Team

For the past month, I have been working with the Honohono Tatou Katoa (HTK) team within Mercy Hospice in Tāmaki Makaurau (Auckland), Aotearoa (New Zealand). HTK operates as a compassionate community, a term coined by sociologist Allan Kellehear to denote public health palliative care work. The overall goal of HTK as it pertains to the Tāmaki Makaurau community is to enable palliative care to be accessible to all. Aotearoa’s history of colonization of the indigenous Māori people, in combination with the thousands of immigrants from all over the world, makes the fabric of the community both incredibly diverse and incredibly complex. The cultural subjugation of minority groups to the dominant settler “Kiwi” culture has not only reduced ways of life that don’t mimic Western living but has made systems that once belonged to the community now entirely inaccessible. Through trust-building actions within the community and purposeful efforts towards shifting attitudes and beliefs surrounding death, HTK has been working over the past three years to strengthen the ties between hospice and all the communities it serves. From art therapy for elders in the public housing system to death cafes at local libraries to palliative care education services to addressing the funeral poverty amongst Māori people, this team has its hand in almost every possible palliative care issue that faces community members. Moreover, they have taken me on as one of their own the past month, allowing me to contribute to project ideas and even add my ideas from my travels to their growing list. Their passion for public health palliative care is addicting and has solidified a growing feeling I’ve had for the past few months – that public health education and research will be an essential piece of my career looking forward. 

HTK is an all-women team made up of 6 amazing members. I will preface what is to come by saying no I was not paid by Honohono to write any of this and none of them were looking over my shoulder – they are all as amazing as I am about to make them sound. The team is small but incredibly mighty with each person taking on the role of what would normally be accomplished by many. A quick introduction to each and the role that they play:

·      Dr. Carol McAllum (Director of Quality and Partnerships): Hailing from Scotland, Carol handles much of the clinical side of the HTK project but she juggles just about everything. Carol trained as a pediatrician in New Zealand before coming to palliative care. In conversations with her, I can’t help but see the parallels between her journey and the one I am about to start; she similarly was asking all the same questions I am now about what it truly means to care for people at the end of life and what it means to serve a community. I am beyond grateful to have the role model I have had in Carol this past month.

·      Maria Mariotti (Project Manager): Maria is one of the most interesting people I have ever had the honor of meeting. She has truly lived a million lives in one; after being born and raised in Italy and working a corporate job, she decided to leave on a spiritual journey that took her all over the world. She came to New Zealand as a yogi at first but later found her way to palliative care through companioning. She has one of the best energies and instantly brightens any rule and she truly represents the heart and soul of this team.

·      Hera Pierce (Pou Atawhai Kaumatua): Hera is the fearless leader and teacher of HTK, as well as our Kaumatua (Māori elder). She, along with Chantel, make up the Tangata Whenua –the people of the land—team. Besides being a champion for bringing palliative and end-of-life care services to all underserved communities in Tāmaki Makaurau, she is also an expert on family and sexual violence within Māori communities. Hera has taught me so much about the Māori way of being. She simply has that way of quieting a room with a single sentence; there are very few conversations or meetings I have had with Hera where I don’t leave learning something entirely new about myself and the world around me.

·      Lana Petrović (Equity Advocate): Lana wears so many hats for the team that it’s almost hard to keep track of. She is a social worker by training and originally was brought to HTK as a placement while she was a student; she was so inspired by the work she has come back to work full-time on the initiative. Lana has the answer for everything – I’ve not only been inspired by her expertise and creativity as we discuss complex issues facing palliative care access but also her consistent commitment to learning. She has taught me a ton about te reo Māori (the Māori language) from her time studying the language itself. She is also currently taking a reiki course which is also ridiculously cool.

·      Chantel Matthews (Kaimahi – Tangata Whenua): Chantel makes up the second half of the Tangata Whenua team at HTK. I’ve spent a lot of time with Chantel, and she is simply one of the most interesting people I’ve ever met. First and foremost, she is an artist who does amazing, complex, and hauntingly important pieces (look her up!). Within the team, she brings a ton of fire, creative solutions, and fierce advocacy, often laughing about wanting to solve all of the world’s problems at once. I’ve learned so much from Chantel about what it means to be a true advocate and about self-expression; she has even gotten me to do art on many occasions which is pretty impressive if you know me.

·      Chloe Bangs (Hugh Green Fellow): Chloe is a Hugh Green Fellow – a public health palliative care fellow—along with being both a doctor and having an MPH. Essentially, she is my blueprint for what I would love my career trajectory to look like. At HTK, she can span the expansive, creative ideas for tackling inequalities with the often harsh, bureaucratic realities of the Western care system; she does so in such a graceful and expert way. I’ve been so impressed with her ability to translate amorphous, abstract ideas into actionable ways to enact change. She is certainly the type of physician I hope to emulate. 

I felt it was important to introduce everyone because of the mosaic nature of the team. Each member brings not only their unique background and expertise but their personality that contributes to making this environment so exciting and infectious, and oftentimes leads us to discuss all of the world’s problems before realizing we have to start somewhere a tad smaller.

For ___, By ____: From Womb to Tomb

While I could spend endless pages discussing each project I’ve worked on or near while at Honohono, I’ve been particularly inspired by the overarching frameworks that HTK operates under. Many of the projects being fleshed out at HTK follow a method in which Honohono enters a community space, identifies a gap in resources, provides a means for access and education surrounding this need, and then withdraws to the background, remaining only in a supportive manner. In simple terms, the team would call this a “train the trainers” initiative. It follows the idea that underserved communities don’t have worse end-of-life care outcomes for some internal reasons but rather that there are barriers to these community members receiving education about the resources that are in place for them. HTK does not see its job as coming in to commandeer the end-of-life care from these communities; it sees its role as strengthening the confidence of community members to teach each other and navigate the system for themselves.

HTK’s programs are for ___, by ____ (ex: for Māori, by Māori), systems that are set up for a certain underserved group with the intention that they will later be facilitated by the group themselves. This approach immediately piqued my interest; it is so simple yet something so overlooked when it comes to health advocacy and education. In each country I’ve been to, communities have been defined differently. In Ghana, communities were very homogenous in that they were all typically native Ghanaians whose genealogy could be traced back to the very same town they were living in now. In South Africa, this was also true amongst native South Africans but there were deeper complexities amongst the white Afrikaans, the white “British South Africans,” Indian immigrants, and an extremely complex distinction of a mixed race community referred to as “colored.” However, the systems in South Africa were not yet entirely “Western,” they were still in many ways developing. Here in New Zealand, I have my first taste of what it means to practice Western healthcare in an extremely heterogeneous society where colonizers became the dominant class. With this clash of cultures, advocacy becomes increasingly more complicated; entering a space as a pakeha – a white foreigner – means carrying a legacy of colonization, erasure, and violence. I say all of this because I have noticed more since my travels to these very diverse countries how faulty some of the mainstream ways of “advocacy” or “aid” truly are. The idea of white saviorism – going in and providing aid only to take it away when you leave – is at the core of so many medical-based missions. By not teaching or building the foundation for lasting systems, this type of aid only exists in a bubble and often negatively affects the communities that are meant to benefit from it. However, this year I learned the harm of advocacy that does not ask but assumes. I think of how many times, as a younger person, I had an idea about a way to help a group in need; we all did it in some form – food drives, volunteering schemes, internships, etc. There’s not an inherent harm in doing these things, in trying to help in any way you can. I have come to see, however, that the strongest, most effective, and most enduring forms of advocacy are the ones that don’t assume they know what is best for an underserved group, they ask what is needed. In my experience this year, asking rather than assuming also prevents cultural incompetency or perceiving that a group of people needs something because, in Western culture, we would want those things.

As I have been reflecting on this notion of advocacy as it pertains to medicine, I am constantly reminded of the novel The Spirit Catches You and You Fall Down by Anne Fadiman. Fadiman writes about a young Hmong girl, Lia, who has epilepsy but whose family is non-compliant with the medical treatments because in Hmong culture sickness is representative of a loss of soul or the attack on a soul by spirits. The book chronicles the long battle between the Western medical system which wanted to “cure” and Lia’s Hmong parents who wanted to heal her soul. The clash even resulted in Lia being removed from her parent’s custody and placed in foster care for a year as doctors claimed her parents were harming her through being medically non-compliant. Ultimately, Lia falls into a coma and is taken home by her parents where her soul is cared for by Hmong shamans and traditions. Lia lives for 26 years in a coma; the average coma patient with medical complexities like Lia will live for 2-3 years.

I share this story because it is a prime example of Western medicine attempting to supersede the spiritual beliefs of minority cultures as opposed to incorporating them within the framework of modern medicine. The team at HTK allows this lesson to guide every single one of their initiatives through their by ____, for ____ approach. The “for ___” emphasizes that their programs are designed for the underserved community groups they enter and are done so by organizing wānangas – discussions and deliberations – with existing community groups to better understand the needs of underserved communities. From these wānangas, programs emerge that have the long-term goal of independent self-instruction. In other words, while initiatives may at first be facilitated by HTK, HTK designs the programming such that other people within the community can take on their role, becoming “by ____.” Some examples:

·      From wānangas with local Māori groups, HTK discovered an obvious need to address funeral poverty, the debt that is accumulated when Māori people try to fulfill their funeral traditions within the Western funeral bureaucracy. HTK has even heard stories of sick family members who refused to tell their family they were dying, going so far as to leave to die, because they did not want their loved ones taking on funeral debt. To address this issue, HTK plans to implement “kits” that will exist in various places accessible to Māori people (local maraes, hospices, libraries, etc) that include materials and resources that enable Māori people to have access to the items necessary for a tangi (funeral) and feel confident in their ability to facilitate a proper tangi for their loved ones without going into unimaginable debt.

·      In concert with a Muslim community group, the Working Together Group, HTK recognized a need for Muslim people within the Auckland community to feel better prepared to take care of their community members who are dying at home. After several meetings with the Working Together Group, HTK began preparing the At Home Aged and Palliative Services initiative, a training app that would follow the “by ___, for ___” model. The app would aid community members by training them to be informal caregivers who then can visit the homes of community members who are seriously ill or dying. While the main role of these “care connectors” would be to provide respite, culturally appropriate end-of-life care, and at-home services that fill the gaps in the medical system, they also would be informally training the family caregivers, helping them to feel more confident in managing their loved ones care.

Watching HTK work under this model, I have been amazed at how simply genius it is. By focusing on identifying issues through asking rather than controlling, they target the exact needs of the underserved, providing methods and resources that attempt to ameliorate the most pressing issues. Moreover, by centering programming around training up the community rather than installing structures that require the “advocates” to constantly be present, these public health initiatives have the endurance to outlive HTK’s involvement tenfold. The hubris of Western forms of public health and community work is overridden completely if one enters spaces intending to leave, of merely being a stepping stone or bridge. Being so integrated into this work for the past month, I have found it enthralling, eye-opening, and beyond fulfilling. While much of my work this year has been clinical or having to do with clinical structures, I have found I have equal passion for community work and in many ways, perhaps given the current political climate, feel so energized by my involvement this past month. As I move through my time in New Zealand, I not only feel myself growing as a better advocate but feel that my future career path will likely include deep roots in public health palliative care work. Perhaps, even starting compassionate communities in and around the US.

Language and Dominant Culture

A less obvious but pervasive theme to my work in Auckland this past month has been that of language and culture. During my time with HTK, I have done my best to learn some te reo Māori (Māori language). Unlike in Ghana or India, where learning bits and pieces of the language were entirely necessary for basic communication between myself and others, learning te reo Māori has been more about a way of seeing the world. Te reo is generative, expanding, undefinable, and entrancing. To me, it’s poetry incarnated into a language so no wonder I am endlessly enthralled by it the more I learn about it. During HTK meetings, my team will slip in and out of te reo Māori because it encapsulates feelings, beliefs, and the spirituality of the native people of this land that much better. More than that, I have come to find it encapsulates what it means to be living and dying that much better.

As much as I have come to appreciate te reo, I have equally come to have a distaste for the English language for more reasons than one. During this initial introduction te reo, I feel more and more the dangers of the reductive powers of English. From a writing standpoint, te reo Māori employs paragraphs of English to summarize what a whole world encapsulates. As an example, I’ll use the word mana which I will attempt to describe the way it has been taught to me. Mana exists within a person from the time of copulation, the literal meeting of a sperm and an egg. As you grow and move through the world, every choice you make can serve to increase and strengthen your mana or dampen it, however, you can never make it disappear altogether. A person’s mana is tied to how well you treat others – your family, your friends, your general community – and because so much of Māori spirituality is tied to a person’s whakapapa, their genealogy, a person’s ability to maintain Māori traditions and honor their whakapapa has much to do with their mana as well. Moreover, it is the whakapapa itself, the line of atua or ancestors, that confer mana onto the newest descendants of their line. It is the very thing that connects life on Earth to the spiritual plane, to Wairua. I would need to fill pages and pages to fully describe mana and even then, I don’t think I could do a very good job. That’s how much of a force, of an intangible but all-encompassing tenant of Māoridom it is. However, if you were to look up mana in a te reo to English dictionary you would get something like this: “prestige, dignity, power, influence.” My creative writing brain is amazed at the power of a single word like mana and the pure work and world-building it can do that English could only do in pages and pages. I find myself more than jealous of cultures that have developed a language that is imbued with so much meaning and spiritual belief.

However, there’s a greater danger to all of this than just my feelings about English and te reo. In my role at HTK, I have been tasked to do “translation” work, to take what I have learned about end-of-life care from my travels to help HTK translate Māori needs into a Western model of healthcare. However, in doing so, I have realized how even in its best attempts, English reduces the power of te reo words, reduces the spiritual connotations, and therefore reduces the culture. As I have said, to best encapsulate Māori needs at the end of life, I would need a dissertation. Unfortunately, the world of Western healthcare bureaucracy and reform responds only to one-pagers and condensed graphics. In other words, the essence of te reo Māori and the demands of Western structures, down to the English language, are at complete odds. My time at HTK has taught me so much about how to be flexible given this notion; I’ve come to understand the act of translation can be culture-preserving. I have spent most of my time at HTK deeply listening to the Māori members of the team or to community groups I have had the privilege of working with. The essence of the Māori language can be found in the mission and essence of HTK programming. However, when it comes to “selling” this program or aligning it with the Western care model of New Zealand, the words have to be reduced into palatable enough English “bites” that don’t lose the action of the program. It is this back-and-forth work that has made me so energized and simultaneously so angry. While I feel so empowered to be using one of the things I love, writing, to aid HTK, I am angry that the system has to be this way, that a group native to this land is forced to perform lingual acrobatics to get what they need at the end of life. But it’s nothing new. Language has also been a source of oppression and power, you need only look to the dying languages around the world that belong to members of previously colonized groups of people. It saddens me in a way I can’t exactly articulate that this thing I love that allows me to create poetry and to speak about my experiences is the same thing that is used to control and diminish other cultures. While I am not positive how I can reconcile these two emotions, I do know how much HTK has allowed me to grow as a writer and how I consider myself a “translator” between dominant and minority groups in terms of end-of-life care.

Personal Reflections

My work at HTK has also been largely situated in my growing feelings of doom, fear, and sadness for what is happening in America currently. It’s been interesting to reflect on the frustrations voiced by both Māori people and pakeha advocates here in New Zealand who feel that they still have a very long way to go to respect the treaty that was made so long ago between colonizers and native people. And that’s true, there is a long way to go. However, here, you can find little pockets of change, from bus automation that has spoken to me in both English and Māori to announce stops to hiking trails that mark off tapu – sacred – sites of the Māori people. It’s not enough, and will never be enough, but it’s certainly more than the work America is doing in terms of reparations towards Native Americans or anything that uplifts the culture of the people whose land it is that we occupy even before the current government. I’ve lived my whole life in America and I’m not sure I could have told you, before going to Middlebury, that reservations still exist today. 326 of them, governed by the Native American tribes that hold them only so that the government can say they will not provide anything to them on a federal level. I recently have gone down a rabbit hole of understanding the White Colonizer’s history in the US more fully and found out the true history of Mount Rushmore. It’s repulsive and I feel immense guilt that it took me traveling to a country about as far from home as I could get to spark interest in learning more about Native Americans. It’s ingrained propaganda – our schools don’t teach about it and therefore it must not exist anymore. It's a bad thing we did but it’s over. But it’s far from over. Just last night, I was invited to a talk at a potter’s collective by Chantel as the talk was being given by a filmmaker and potter, Katsitsionni Fox, from the Iroquois nation that is now upstate New York. The film she screened showed the reclaiming of a cooking pot tradition that had been lost to her people through colonization and had not been rediscovered until just five years ago by combing through museum archives. I watched as the film’s subject was escorted by white men to the back of museum archives where she had to wear gloves and was given a finite time to handle pottery pieces from her ancestors such that she could learn how to make the pots herself. I had no words for the anger and sadness that poured through me as I watched this woman learn about her people through a museum exhibit that she still doesn’t have a right to or ownership of. Take a minute and just imagine that. This is the best picture of America I can conjure up. After conversations with the filmmakers last night about reclaiming burial traditions and end-of-life care within reservations and Indigenous spaces, I feel very strongly that the work I am doing here in Aotearoa is work that I will need to continue once reaching home.

A traditional cooking pot made by Katsitsionni Fox, cooking a traditional porridge made from maize, raspberries, and maple syrup.

I was asked recently how I feel that any of the reforms or focuses coming out of this year will be possible for me to accomplish given the “State of Things at Home.” I see it all as incredibly depressing but also eye-opening; this hate isn’t new, it was ignored and suppressed in the teaching of our history. America never really was all that great. We can all panic, as I have done on several occasions over this year, or we can continue educating ourselves and orienting ourselves towards action in whatever way we can. If there’s anything I have learned this year from my deep dive into how the state of communities reflects how we care for the dying, it’s that community intimidates power. I’ve been thinking about this more and more – how power’s ultimate goal is to create such deep division because it fears community. Community can do everything – if not more – than what the people we elect to power say they can do for us. That’s why Indigenous people and their ways of being pose such a threat: they’ve been living in community-based structures of economy and society for centuries. People of the land, of community, don’t need “modernization” and all of the evils that come with it. They don’t need the people in power. Political rant over, I promise.

My time in Auckland has also been a time of push-pull towards home on a more personal level. Arriving here after 5 and a half months of living in Africa and India, I experienced extreme reverse culture shock. I took the first couple of days to get reacquainted with the ins and outs of the “Western World” again. Some things were incredibly overwhelming; I spent about an hour in the grocery store on my second day here because I was so crazed by the size and all the choices, and I eventually walked out with the weirdest assortment of groceries ever. I was absolutely wiped after that adventure. But some normalcies returned to me that I much appreciated; after 5.5 months of dressing extremely conservatively in long pants and long sleeves despite the intense heat, it was a great feeling to put on shorts and a t-shirt again to roam about Auckland. Speaking of roaming, it was the best feeling in the world to be able to explore via walking, listening to music, or a podcast and not have to be ultra-aware.

The adjustment to Auckland has also brought with it the reminder of life back home, not only because I am reminded of what it is like to live independently in a westernized city again but because the long arduous process of applying to medical school has begun. I’ve been dealing with the unique challenge of devoting proper time to my Watson, exploring my new home, and completing my applications. Most days, I have felt there is not enough time in the world to do everything I want to. On some days, I find myself overwhelmed by some of the stress of balancing “real world” tasks coming up and my Watson travels and work; I’ve caught myself feeling disappointed with how easy it is to feel pulled back into the Western world norm of stress, anxiety, and having a one-track mindset. These were pieces of myself that I very gladly shed the last 5 months that I am worried will creep slowly back in, that I will somehow lose these pieces of myself that I’ve grown to love when I return home. This week, I spoke about this fear with Maria, the Honohono project lead, who has traveled all over the world after a spiritual awakening that pulled her from her corporate job in Italy to ashrams in India. She assured me that these changes never truly leave you, especially if you continue to emulate the person I was this year. She said it would be about following my desires and referenced the Bhagavad Gita which teaches us to “do your dharma (duty” without attachment to the results. She reminded me that whether we succeed or fail is none of our business, it’s the universe’s business. But whether we follow our desires and do our duty is our whole business. With my increased fascination with spirituality as I’ve traveled from Ga proverbs in Ghana to Māori karakia (invocations), I quite like the idea of “doing your desires” and throwing away the rest. I feel incredibly grateful every day to be called so strongly to this work, to the people I have the chance to meet, to learning and exploring. These are my desires and I’m leaning into them more and more, regardless of the outcome.

Mānawa mai te mauri nuku               

Mānawa mai te mauri rangi              

Ko te mauri kai au,                               

He mauri tipua                                      

Ka pakaru mai te pō

Tau mai te mauri

Haumi ē, hui ē, tāiki ē

Embrace the life force

Of the earth

Embrace the life force

Of the sky

The life force I have gathered

Is powerful

And Shatters all darkness

Come great life force

Join, gather, entwine