hospice (ending)

I just finished my month-long hospice rotation at the Connecticut Hospice in Branford, which both gave more and took more than I anticipated. Perhaps because after a slew of clinical rotations, I've lost a bit of the expectant newness that used to come before each new venture, and so there wasn't much anticipation to begin with. I didn't think much about what hospice would be like before I started. Having had a strong experience that led me to being interested in the rotation in the first place, I think I unconsciously felt that I'd reached a certain level of intensity that would prevent me from being taken by surprise here, even as I approached this rotation as an opportunity for broadening experience, concrete and emotional. I'm glad to have been wrong.

I haven't felt this motivated to write about a medical school experience for a long time, but before doing it in a structured and comprehensive form, it feels nice to sit in bed and ramble about all the things that made it filling, and hard.

On my last day, an APRN asked me what was the most memorable event during the rotation. It would be hard, and probably not accurate, to choose one event or interaction or experience. Instead it was more generalities absorbed that most affected me. I told her that I'd take with me the calmness of the place, the simplicity of the medicine, and the kindness of the people.

Connecticut had the most snow in January on record since years and years ago. We had two two-feet snowstorms, a couple ice storms, and record below freezing temperatures. While I was used to this in Boston where the winter is more harsh than here, I'd never had to deal with the visceral challenges of snow and ice. For the first time in my life, I had to shovel my car out of the snow, had to try to drive it through the narrowly plowed driveway, had to shovel myself out of the driveway that wasn't plowed widely enough, had to shovel piles of snow off the entrance to the street where the tires would just spin in place, had to chip away at inches of ice off every window and off the roof of the car, had to see why getting ice off the roof is important as a I saw sheets of ice slip off cars on the highway, had to steer my car as it slid on unsalted iced roads, had to walk strategically to avoid puddles of slush and piles of iced snow. It was uncomfortable, and tiring to have to work so hard and think so hard about how to simply get somewhere.

There were also incredible vignettes of how pretty harshness can be, in the snowflakes that would freeze on my car windows to create a printed pattern I'd have to scrape away, in the ice that dressed bare tree branches making the forests on my drive looks like crops of glistening gray hair, and in the sheen of clean soft snow hardened on top like creme brulee, by the ice. There were incredible views from the windows, of big flakes falling against warm yellows and cold grays. There were the first falls, untouched, and the old snows, dirtied.

After the trek through all of that, I arrive at a workplace with windows in tandem, bookshelves, and fireplaces. Laid on the beds are crocheted blankets and patchwork quilts. Hand-painted signs of patient's names are hung in their respective spaces. Guitars strum, and every other day there are sweets from families or employees. It seemed to me I was lucky to have done this rotation during the onslaught of winter, to have to confront bitter elements with reason to escape to this cove. It's not often that you think of a workplace as soothing, especially not hospitals.

It's true that this atmosphere is partly due to the way that the rough edges of medicine are worn away a bit by the different goals and mindset of hospice. There is more thought to necessity, and the removal of what's not. In that sense, things feel simpler. There are no fancy tests to order; people often get sicker and instead of embarking on a diagnostic quest for etiology, we acknowledge the worsening condition and continue. There's still a lot of room for creativity in catering to individual needs. My attending pushed us to consider the best options for care, to not get stuck in status quo. But grounding all of that movement is a framework of simple stability. Not to say that dying is simple, but in the face its possible complexities, people's wants and needs become basic and streamlined to the core, without the excess that can often distort. After awhile the pharmacological treatments become routine, leaving more room to focus on non-pharmacological care, and hospice focuses on that much more than other areas of medicine. Its wholistic perception of people is reflected in its interdisciplinary approach to care; doctors aren't at the center, are instead an arm, of the scheme. There is constant, continual communication with the nurses, social workers, pastors, and family. And while there are many factors to consider, the way in which all these people work together to focus on each person's care, gives a simple sense of value.

I imagine that the comforts and simplicity help the staff as much as the patients, because as calming and welcoming a place it is, it is a hard place to be. Because of that, I think it attracts and seeks certain qualities in the people who work there, making for an incredible community. I've never met such a cluster of genuinely warm, kind, and strong people. The nurses, who are the heart of hospice care, made the biggest impression on me, but the kindness is palpable in every person encountered, from the person at the front desk to the person manning the cafeteria.

In the morning, the nurses and physicians round together, going over the care for each patient. The nurses are the ones giving report, which has never been the case for any other rounds I've seen. They make me remember why I want to be good at whatever it is that I do. They take care in the most whole way possible: delicate where people are fragile, tough and honest when needed. They advocate for their patients, they know their stuff, and they all have voice. It's this combination of warmth and strength that I admire most in women who give care, and every day it reinforced goals to work for.

On my last day I told a slightly demented patient of mine that it had been really nice to take care of her. She replied, "It was really nice to take care of you too." Even as her response was a rote one, I appreciate the truth in that. I think that at their worst these patients and their loved ones have given me more than I could give at my best. Each person copes differently, experiences different pains and discomforts. It would be misguided to say that all of them gave the same thing, but as a whole, it was valuable to witness their capacity to give when so much is being taken from them. There is a woman whose body has been distorted and disfigured by tumors, and as she struggles with grace and patience, she makes me think of how deep our reserves run, how much we can face without being torn. There is a man who has accepted that it will be difficult for him to breathe until he no longer has to, and his first thought in conversation is to answer all the questions he knows you'll ask before you ask them, without pause and without rest, with the creases in his face working with effort to give you all he can. There is a man actively dying before the eyes of his wife, who comforts me with stories of him before he was sick--redheaded, singing silly songs in the morning.

In conversation about this, it was pointed out that perhaps it is something about this stage in life, and not something intrinsic to these specific people, that make us that way. It doesn't matter to me too much from where the source stems. To see people in pain, so close to something unknown, be gracious and generous and sensitive gives me faith in the endurance of these qualities and makes me try harder for the patience to endure. And it's not to say that these people weren't struggling, weren't falling back in some ways, but that there seems to be a pull to hang onto the good when things are slipping away.

I can't say that I endured the past month of this rotation with the same kind of grace that I observed in my patients and their families. The rotation was hard for me. I was surprised by how quickly people transitioned from alert to unresponsive, how I could never get used to someone changing so much over hours or days from the way I first met them even for the ones I rationally knew had come to hospice to die. I missed the people they were as they were still breathing, and I wondered how it was for people who had been their lives. While the pace was unhurried and I was never overworked, and I loved most days there, at the end of them I felt tired.

And I was mean when tired, and the emotional stress of seeing and taking in this weighty process manifested in a lot of physical breakdown. Getting sick, breaking out with a cold sore, a couple allergic reactions, and developing various muscle strains, I was told that I was pushing myself too hard, that I needed to listen to my body. I think it is true that we should take care of ourselves, but I also find value in digging for the resilience that lies in vulnerability, and believe that this first means knowing what makes us weak. I didn't plan this of course, and it could be argued that I'm rationalizing the discomforts of the experience. But somehow, an intuitive, inexplicable part of me feels that there is good reason the weather was so harsh, the people so fragile.

summer / travels

The days have followed a routine these past days, of early morning heat collecting more and more moisture that it returns at night with heavy rain, adding some noise and light in the mix. It's not just that this weather doesn't bother me. I love it, and I can guess how you'll respond--but it has nothing to do with a principle of appreciating imperfection. I tolerate the dry heat of California and dislike it when it hits the high 80s, but I love East Coast summers of the sort we've been having in July (not the steady cold gray rain of June), where the sun fries the days and we walk through dense air that cools with rain. Coming home to a stuffy non-air-conditioned house, I open all the windows and wait, and the water comes down so thick and loud that it's like being outside, hearing the slickness of the roads and the miscellaneous trees and railings interrupting the rain's course.

This is the first time I've been on the East Coast for summer since Cambridge in 2005. I have so, so many moments I hold so close from that summer, of being able to live through the night in summer clothing, of escaping to the river after the stillness of lying in front of the fan in my dorm room, of getting drenched in post-humidity rain. At the same time this summer takes me back to a places nearby, it reminds me of summers faraway. I've been so lucky to have been able to travel the last three summers, the past two in Asia where the humidity allowed me to slip into the foreign surroundings. I'll never forget the calm rain of Japan or those crazy amazing thunderstorms in Vietnam.

People say they love travel, and I would say that too except that I think it's more that I love places. I like transiting too, and the movement, and places may not quite be the same without all that, but mostly I think it's what place has meant to me, whether it's everyday corners or momentary visits. These summers have been Greece in love, Japan in transition, Southeast Asia in adventure, Vietnam in solitude and history, cross country in anticipation, Eastern Europe in relief. I never write cohesively as much as I'd like about these bulks of time, because as always I struggle between wanting to experience so that I may express and finding that experience takes from me the time that a slow one like me needs to write.

I did journal through a lot of it. In college, knowing that I wanted to go there one day, one of my roommates gave me a spiral journal clothed in a red Japanese print. When I went to Vietnam, my best friend from high school gave me a travel journal (it came with a protective plastic bag, perfect to shield from rain). It's funny how there are places you long for, that you still long for after you visit; then there are places you long for, that after you visit you don't imagine in the same way again. Japan preoccupied a part of me for some time, but is a place whose significance for me changed afterwards. My desire to go there developed from images, and now afterwards I can't conjure images the way I can for some places. But I do recall a lot of what I felt there--the struggles of that time period and that trip, understanding and learning (still) to value the tough nitty gritty of connections to my family and friends, the long train rides, how much I appreciated really living with myself.

From that journal more than two years ago, a day in Nara--

So many of the temples, statues and buildings here were destroyed in some way (burned, earthquake, conquered), and then rebuilt. On the train back to Kyoto--walked a great deal today, as the sights in Nara Park are very spread out. A deer bit my shorts and ate my map. The people here are very proud of this ancient capital--Japan's first permanent one, though it was only capital for 74 years, before it was moved to Kyoto for 1000. That endears me to this city, to which the Japanese are so connected to, despite its short life as capital. I like the idea that something like that persists in communal memory. The largest bronze Buddha is in Nara, and I liked the temple it was enclosed in very much--the largest wooden structure (and the original was even bigger). The building had been burnt twice and an earthquake knocked the head off the Buddha and melted it. Yet these were restored and the Japanese are all over the place as a tie to the past. I respect that kind of respect for history and conceptual entities.

It was fairly late after I left the temple and it was a far walk to the last sight I wanted to see, Kasuga Shrine. By the time I got there it was closed but I hadn't planned on seeing the inside anyway. It turned out to be the best part of Nara.

It's tucked away in the woods and contains 3000 stone and bronze lanterns. They went on forever. It was pretty empty since it was early evening/late afternoon but the few wanderers around asked me if I wanted a photograph of myself. Even when people offer it's hard to accept but I appreciate the sentiment. For most of this I was very much alone, and I liked taking my time to walk around. The lanterns were beautiful--I can only imagine how other-worldly they'd be when lit. I'm not sure why they appealed to me so much. Thinking of it now, the simple idea of sources of light is appealing, but also that there's something so heavy and sturdy built to contain a bit of warmth and light--something fragile, really. Also something with a lot of power. Mostly I like the idea of holding and containing and protecting light. The idea that it's a delicate thing which requires defense and protection with bronze and stone. And there were so many.

I like old Japan a lot, even contrasted against all the modernity. It's a refuge, and perhaps will never again feel like the original, not a part of daily culture, but it stands as a backdrop.

Apparently from 768 to 1863, the Kasuga Shrine was torn down and rebuilt every twenty years, based on Shinto beliefs of purity. How funny that rebuilding is both a philosophy, deliberate; and an unplanned necessity.

untitled

In Connecticut, a morning in January and a morning in March don’t look too different when you look outside for help with what you should wear that day. Usually it’s bright and there’s often unplowed white on the sidewalks and people shuffling in layers. Even if there aren’t, you know enough about this coast to know that your scarf is not accessory but requisite. I came here from California, where warmth is numbing. Here winter occupies half the year, and the seasons are stitched together. Sometime in April someone starts pulling the thread. White turns to gray to yellow, a familiar and welcome flow. As capricious as the outside can be, even if it’s cold when sunny or if twenty degrees separate two consecutive days, we sense its character. And so, the oft elusive weather becomes part of our concrete knowledge.

This is why, when testing a patient’s cognitive function, we ask them what season it is. It’s supposed to come naturally. Our patient is seventy-eight, and the deeply pressed lines of her face change what I consider natural. As she furrows her forehead in an effort to find the “right” answers that she so badly wants to give us, the rain falls steadily harder outside. Watching her sit and speak in front of the weather, the bus ride we took to the nursing home feels farther away in time. I’m suddenly aware of my socks wetly clinging to the inside of my shoes.

When asked, our patient tells us the correct month—April. It’s only when she says this that I realize how far into the year we are. Only a couple weeks ago stacks of muddy ice tinged with white still created tunnels on the street. Not so long did thirty degrees feel warm. At some point in that winter the snow glazed over and made a varnish still visible at night and worthy of ice skating. During the day a friend commented that he liked how bright it was, when the snow was fresh and the sun piercing. This year it all ebbed into spring slowly so there was no time for embrace or longing. But we still remember.

When then asked what season it is, the woman sharing with us her presence hesitates. She doesn’t consult the window behind her, even though I look past her to the outside. Instead she looks ahead and I wonder at what or for. I think the sound of her delicately mouthed April has faded. Then she says, “fall,” and I think our insides break a little.

Would she have known, if we had been sitting outside to let the falling water slip off our cheeks, rest in her creases? What if the season had been the stronger one of few weeks past, and she could hear the salted snow stuck in the grooves of our shoe soles as we walked across the room to her? Or if she’d walked long enough for the water to seep into her socks? It’s out of grasp to feel what touches her, much less link sense with thought.

And fall here is not far from spring, anyway; what does it mean to mix and match transitions? It’s solemn on the ride back to school. My classmate sitting next to me confesses some depression over what he’s seen. In not these exact words he says that life is for interaction with experience, and to not know your experience takes away purpose. It’s funny to me that this sounds and is often true, when I came to medical school with the purpose of meeting experience.

But our windows tell us little, and what we feel of the outside is inexplicable. For the woman giving us her words, the layers of expression have been shed, and the experience left so bare that it’s gone from our view. Without even the frayed threads of winter past to twist around her fingers, it’s still spring.