Community – Laura Stavoe

April 23, 2023May 14, 2023

Recent Findings

Tending to Endings (seventy-two)

I mentioned to a friend that I’ve been trying to wrangle my next Tending to Endings and have been struggling, not because I have nothing to write, but because I have so many things! Between Chaplaincy School and the surprise Liver Transplant Practicum that fate enrolled me in over this past year and a half, I have a firehose of material related to end-of-life and the other topics I focus on here—caregiving, storytelling, grief, aging, talking about hard things! Also, community, community, community! (I will write more on community soon).

My favorite Tendings to write are those where a short true-life narrative leads into a topic that might actually be useful to others! I’ve started about twelve of those recently and they each seem to unravel into too many threads. Which I know just means that I’m too close to it all to write it here. As you may have recognized by now, I don’t mind sharing the details, but I like to have a clear purpose in doings so. It takes me awhile to know what might be most relevant and helpful to others.

So, I figured I’d start here, with a few resources I have found especially powerful and resonant, all written by people who already have their thoughts in order! They write to many of the topics I’ve been drawn to lately. This gives me hope that there is a cultural shift or at least the potential for one that will offer more support, more freedom, more honesty, and more loving community during end-of-life care and other stories of upheaval.

Speaking of which, I want to let those of you who have following since John’s liver cancer diagnosis to know that he is doing great! We both are really! At his six-month post-transplant appointment, we learned there are no signs of cancer. John will be on anti-rejection meds for the rest of his life, but right now they don’t seem to be causing any problems and he feels healthy and is back to full activity including (of course) almost daily tennis. We are both forever changed by this experience (which is part of what I’m finding my way towards writing about) and it is such a gift to be on the other side of transplant!

I appreciate you being here very much!

More Resources

Alzheimer’s Society, UK

I want to begin by thanking everyone who posted about aging and Alzheimer’s care on the website last month: Diane, Janet, Lorelei, Wendy, Tom, Amy, Katie, Jana. I have new books on order!

I also wanted to mention that the national UK Alzheimer’s Society has a community care focus for their website that I find helpful and that is very different from the US ALZ.org site which is more research and fundraising focused. To me it seems both are essential as so many people are currently impacted.

To Be a Healer, Interview with Vivek Murthy

Did you know we in the U.S. have a Surgeon General who investigates loneliness as a public health issue and can lead an amazing group meditation? I did not. Here is his conversation with Krista Tippet that aired a couple weeks ago on the On Being podcast.

The Light of the World, Elizabeth Alexander

Elizabeth Alexander is a poet who write with wisdom and beauty about the unexpected death of her husband, Ficre. Here is how the memoir opens:

This story seems to begin with catastrophe but in fact began earlier and is not a tragedy but rather a love story. Perhaps tragedies are only tragedies in the presence of love, which confers meaning to loss. Loss is not felt in the absence of love. “The queen died and then the king died” is a plot, wrote E.M. Forester in The art of the Novel, but “The queen died and then the king died of grief” is a story.

Later she writes about her mother-in-law’s death which occurred before her husband died. (This memoir elegantly meanders forward and back and time):

When my mother-in-law was dying, she faced illness with tremendous equanimity. She did not want pain—and luckily, medicine could take care of that—but she was not afraid of dying. We never saw her flinch in its face. I had always been afraid of death, waking from nightmares of its imminence even in my childhood. Much to my surprise, I was able to be present and useful and near to her as death approached near. I was surprised to learn I could sit by the side of death. I was grateful to be able to help this great woman who by example showed me so much of what it meant to be a matriarch. By letting me near, she showed me I was much stronger than I’d known I was.

So often spiritual thoughts and questions arise when people die and one of the things I love about this book is the natural, fluid way Alexander lets us in on those moments where she notices and questions mystery:

My mother-in-law’s last night on earth, a fox crossed our path in Branford, Connecticut, as we left the hospice. We knew somehow that it was her, as I no know the ravenous hawk came to take Ficre. Do I believe that? Yes, I do. I do not believe she was a fox. But I believe the fox was a harbinger. I believe that it was a strange enough occurrence that it should be heeded. Zemesh Berhe, the quick, red fox, soon passed from this life to the next.

Emergent Strategy: Shaping Change, Changing Worlds, adrienne maree browne

There are many things I love about this book. For instance, browne builds on prophetic work of Joanna Macy, Octavia Butler, and Grace Boggs to offer a way to envision and enact social transformation. One reason it speaks to me is that browne gives attention to the set-backs and losses and range of emotions that occur along the way in any collective movement:

Transformation doesn’t happen in a linear way, at least not one we can always track. It happens in cycles, convergences, explosions. If we release the framework of failure, we can realize that we are in iterative cycles, and we can keep asking ourselves—how do I learn from this? Emotional growth is nonlinear. It feels really important to me to include pieces on grief and emotions in this book because, as people participating in movements, we are faced with so much loss, and because we have to learn to give each other more time to feel, to be in our humanity

From Here to Eternity: Traveling the World to Find the Good Death, Caitlin Doughty

Before my mom died, I was often one of many people referring to the body as “just a vessel.” That bodies, might be rather important vessels (even after death) given that they carried the people we loved throughout their lives was not something I pondered much. Since then I have come to believe that spending some time considering, honoring, caring for the body after death can be helpful to many throughout those early days of grief.

Caitlin Doughty is a mortician who does a deep dive into learning how bodies are considered, tended to, honored, celebrated, grieved over, and dispensed of in various countries. Like most good travel stories, this one helps Doughty also see her own culture’s death practices in a new light. She also investigates some newer (still rare) US options such as composting in Washington and open air funeral pyres in Colorado. Her book is not an argument for a particular way, but rather a look at what elements of death care are tended to in different communities.

This is a quote gives a view into her overarching thesis:

In America, where I live, death has been big business since the turn of the twentieth century. A century has proven the perfect amount of time for its citizens to forget what funerals once were; family-and-community-run affairs. In the nineteenth century no one would have questioned Josephine’s daughter preparing her mother’s body–it would have seemed strange if she didn’t. No one would have questioned a wife washing and dressing the body of her husband or a father carrying his son to the grave in a homemade coffin. In an impressively short time, America’s funeral industry has become more expensive, more corporate, and more bureaucratic than any other funeral industry on Earth. If we can be called best at anything, it would be at keeping our grieving families separated from their dead.

For those who are newer to Tending to Endings, Body of Grief is an earlier essay post related to this topic about being surprised at how important some of the death care rituals were to me after my mom’s death.

Instructions on Not Giving Up, Ada Limón

And finally, I want to leave you with a poem someone mentioned in my writing group last week that seems just perfect for spring during complicated times. By U.S. Poet Laureate, Ada Limón.

I love hearing from you! If you have resources you want to share or questions or feedback about Tending to Endings please leave comments below. You can also reach me at laura@laurastavoe.com. If you would like to subscribe (for free!) to Tending to Endings, please leave your name and email. Also, in case you are wondering about those photogenic goats! They live next door and are quite neighborly!

Laura

November 19, 2022December 30, 2022

Where to Begin

Artwork on the wall of Intermountain Transplant Center in Murray, Utah

Tending to Endings (sixty-nine)

It was our second day in the little house in Salt Lake, where John and I moved to be close to the transplant center while waiting for John to hopefully be called in for a liver transplant. His MELD score would go up on September 29 due to his cancer diagnosis, making it far more likely that he would get called. Still, it would likely be a month or two, we were told, maybe longer.

We arrived with a trailer filled with our work stations, clothes for all seasons, the mattress from our own comfy bed, piles of books for my seminary coursework and a few extras just-in-case. We held out hope for making it home by the holidays, but it was a slim hope.

John and I were told to stay within an hour drive of the transplant center and to answer every call from every area code. I told friends that for me, the waiting was going to be the hardest part. Yes the months of testing and procedures to get John on the list were stressful and all-consuming, but at least I knew what to do. Now we were entering this unknown stage where a call could come at any moment or not at all. All there was to do while my husband’s life was on the line was wait.

And yes, to live while we were waiting, but even that was a strange task, uprooted as were were from our community and home and not certain of how long we would be in this unfamiliar place.

On the road; the view of the Wasatch Range from the backyard of the little house.

The second evening in Utah, just as I logged off Zoom where in my History of Modern Theology course we had been discussing Immanuel Kant and Friedrich Schleiermacher — Is religion morality at its core, or is it, at its essence, a feeling, an experience of the Divine? — I heard John’s phone ring just outside and his hello. He had walked into the backyard of the little house, I would learn later, to snap a photo of the clouds over the mountains at sunset.

A pause and then, This is John, and there was something in his voice—hope? surprise? fear?—something that made me stand and head toward the door, thinking, Already?

When I opened the side door, John was right there about to come in. He pointed to the receiver, wide-eyed, nodding.

*John the day before transplant and the photo he took* of clouds at sunset, September 29, 2022

All that happened since that call is a story I will be writing for a long time. The very short version is that, as of October 1 at about 1:30 in the morning, John has a new-to-him liver and is cancer-free, cirrhosis-free, and very much alive.

John was released from the hospital four days after surgery, and we attended follow-up appointments at the transplant center twice weekly for the next three weeks, and then were told we could head home to Idaho. We happily hauled all those unworn winter clothes back to Boise on October 26.

John still gets blood draws each week and takes an array of medications each day, and we are back to pandemic level protocols during these first months while his immune system is knocked down to the ground floor. But, he is doing exceptionally well. At his latest appointment in Boise, Alyssa, the transplant P. A. said John was definitely an outlier based on how well he is accommodating the new (to him) liver and how fast he is healing. She also confirmed that he really does have to wait until at least January to play tennis so that his abdominal muscles fully heal.

For this event you get a new organ and a tee shirt; John ten days after transplant (Oct 11, 2022)

Transplant has profound physical, emotional, moral, and spiritual implications. I knew this going in, but now it is a more textured knowing. Ours is only one experience of many (there were ~9000 liver transplants in the U.S. last year), but it gave me a glimpse into a world I had not seen up close.

One of the reasons I haven’t come here to write all this down sooner is all that complexity. Also, I don’t even know where to begin to acknowledge the grace that showed up in seen and unseen ways, and it feels important to start there. John and I are grateful beyond measure for the help we have received from that first moment we learned that he had cancer in February, all the way to now. Grace that showed up as exceptional medical care and generous housing help and food on our porch and handwritten notes in the mail and heartfelt prayers and people caring for so many parts of our lives that we dropped to tend to this.

It will be a long time before I am able to sift through (and maybe write) about the many strands of this experience that make it whole. But there was a moment the night of the transplant that feels important to attempt to capture here in a blog I’ve been writing for almost three years now about endings.

We were in the hospital room and John was prepped for surgery, but we didn’t know yet whether he was going to get a liver that night. We knew the donor was out-of-state and was scheduled to be taken off life support at ten pm. Then there was a window of time for a number of events to occur that included waiting for a heart to stop beating and a liver to be flown back to Utah.

That night, while we waited to learn whether the surgery was truly a go, I though about the times I have been in that other room while a loved one was taken off life support. It had been twice now, with two dear friends, each too young to die, that a small group of us gathered close and did our best to love someone through the end part of her story in a strange hospital room, under heart-breaking circumstances.

And it came to me and I said to John, “No matter what happens with that liver, that other family is having a terrible night.”

“I’ve been thinking of them all day,” John said quietly. “Something that always get’s me is all the people I don’t even know working on my behalf.”

The place to begin of course is gratitude to the human who checked that box on their driver’s license application or wrote it into their advanced directive or told their spouse they wanted to be an organ donor. And then, to the circle of loved ones who did the very hard work of seeing that wish through.

That night in our room, John and I prayed, and wept, and talked a little but not much. Mostly we waited. We ate hospital jello and texted with our kids and eventually watched the latest episode of The Rings of Power on my laptop. After midnight, John was brought down to surgery.

*Back in Idaho in time for the first snow (November 4, 2022)*

I often know when I’m standing on the cusp of something big, but hardly ever how the story will go. I don’t know what will be the hardest part. Or the best. What will be sloughed off and what will be carried forward. What will be ending and what will be birthed or re-birthed or just plain borne.

But I always know, these days at least, that I am not alone.

With gratitude and love,

Laura

Feel free to comment below or send your thoughts or questions or ideas for future installments to laura@lstavoevoe.com.

If you would like to read future issues, please consider subscribing by leaving your name and email below. If you are interested in seeing my favorite end-of-life care resources, you can find them at Laura’s Library.

September 3, 2022September 5, 2022

The Long View

Tending to Endings (sixty-eight)

I carry my camp chair to the circle of people sitting in the sun among gravestones. There is a large group beneath the shady oak, too, but this is June and the temperature is more Boise spring than summer. Dry Creek Cemetery is only blocks from my house and adjoined to Veterans Cemetery which I can locate from the U.S. flag flying atop the hill, every time I walk my regular trail loop behind my house.

Once, a few years ago, the summer after my mother’s death, I was about halfway through the canyon when I heard the sound of a solo bugle playing “Taps” coming from beyond the ridge. I stopped, listened knowing this was for some soldier, yes, and also for my mother. Mom was a peace activist, but even she was moved by “Taps” and would sing the words, which she remembered from her days at summer camp. In the months after my mother’s death, she was with me on every walk, and I would see each songbird and insect and wildflower as though through her eyes.

As I stood, something came up behind me on the trail, I assumed a mountain biker, but when I turned, it was a young buck. I’d never seen a deer in the canyon on one of my walks (and haven’t since), though I’d recently discovered one eating breakfast at our apricot tree. I wondered what a deer was doing out on a trail in the heat of the day on the last week of July. He stepped over some sage and then stood a few yards off, both of us giving our full attention to the song. When the last note hung in the air, the deer leapt off into a neighbor’s backyard, and I continued my hike through the canyon, my mom as present with me as she has ever been.

So, I have a relationship with Dry Creek Cemetery, and yet, I have only been inside these gates a handful of times to attend services.

Usually Death Cafés are held quarterly but, like many gatherings, they have been on hiatus since the start of the pandemic. Now, about twelve of us sit and chat, waiting for the official start, and I feel calm and peaceful among the tombstones.

I wonder when that change happened? When did graveyards cease being scary? As a child they made my skin tingle and I dutifully, superstitiously, held my breath so I would not be the first one in the car to die when, whenever we passed a cemetery. As a teenager they were the settings for horror films and scary stories. Now, cemeteries settle me, give me perspective.

One of the first times I remember noticing this change was not in a graveyard per se, but while backpacking through the canyons of southern Utah and coming upon remnants of kitchens of people from ancient times in alcoves. I thought, This is us! All I worry about, and this is where our bones will be. Bones and maybe shards of some of the things we made, mere fragments from which to imagine a story.

Why that insight was reassuring to me at that time, I can’t quite explain. I am fond of existing. Maybe in my older age I am just more aware of the benefits, the whoosh of freedom and release, when I recognize all that is not mine to worry about or control or carry. All that will outlast me. And then, the other side of that knowing, what is mine right now, the miracle and the rarity of it. In recent years, I find myself wanting to hone that perspective of the long view, to keep it close at hand like some smooth polished stone.

Tending to Endings is partly an attempt to hold that perspective, I suppose, to remember what I have at hand and its worth. And, of course, it is also an attempt to learn more about the stage of life I avoided thinking or talking about for most of my life.

Death Cafés were started in England for some of the same reasons, and thirty-two months ago I attended my first one in Boise and wrote about it in the first two installments of this series. It felt good to be back this June, sitting in the grass at Dry Creek listening to stories about death. My circle included a social work student in his twenties and a man in his eighties who had technically died twice already and a woman who had recently sat vigil with her mom. I spoke about my mother’s dying with more distance this time, more perspective, though she is with me still. I continue to feel her smile spread across my face, for instance, when I see a preschooler crouch to inspect a ladybug.

Throughout the evening, we laughed a lot and cried a little, which I’ve learned is typical of a Death Café. And afterwards, we folded up our camp chairs and carried them over the graves and between the tombstones, heading back into the sweet brevity of our lives.

The next Boise Death Cafe will be held at True North Yoga on September 16, from 6:30-8 pm. All are welcome. You can find more information at the Boise Death Cafe Fb page or email deathcafeboise@gmail.com.

Mom and I at Chicago Botanical Garden, 2016

More Resources

Cemetery scenes figure prominently and positively in the three recommendations I’ve included here: two fictional books and an audio essay. Each, narrator meditates on, yes, loss, but also what continues on after a big loss. In each case, cemeteries are rendered as a place for the living to find healing and perspective as well as a place to mourn.

Fresh Water for Flowers, by Valérie Perrin (translated by Hildegarde Serle).

This novel has been accused of being “too chock-full,” but I loved that about it! It is love story and mystery and bad relationship drama and a spiritual meditation and a family saga and a story about friendship and parenthood and finding home. All the life that can go in and out of a cemetery happens here, pulled taut through the voice of the caretaker, Violette.

The Last White Man, by Moshin Hamid.

This speculative fiction reflects on various forms of loss and the different ways humans in an unnamed city and country respond. Here is one passage from a time when the two central characters, Anders and Oona, visit the cemetery together:

They walked on, and Anders put his arm around Oona, and he suspected then that maybe there was something different about them, about Oona and him, and he thought that possibly they felt the dead as not everyone felt the dead, that some people hid from the dead, and tried not to think of them, but Anders and Oona did not do this, they felt the dead daily, hourly, as they lived their lives, and their feeling of the dead was important to them, and important part of what made up their particular way of living, and not to be hidden from, for it could not be hidden from, it could not be hidden from at all.

If you want a bit more before diving in, this interview with Hamid introduced me to the book in a more thorough way than some of the other media coverage and made me want to read it: “How Do We Face Loss with Dignity,” The Ezra Klein Show.

The Joy of Being an Unwilling Traveler through Life, by Maya Shanker.

While I was working on this post, I listened to an essay written by Dr. Maya Shankar which includes a scene where her father brings her to a cemetery as a way of offering perspective. Shankar is also the host of a A Slight Change of Plans, which is a podcast I listen to regularly and I suspect would appeal to many readers of this blog. This essay is found on the podcast, Meditative Stories.

Library Remodel!

Last week I spent some time refreshing my online library, starting with the titles related to end-of-life matters. I’ve added some images and briefly annotated each title with a few thoughts. The categories (nonfiction, fiction, poetry, podcasts, film…) now include five favorites related to Tending to Endings themes. I also have started an overflow page for those wanting to delve deeper in the stacks. I will continue to add to that list as I find more resources that seem relevant and helpful.

All of this is of course only a small, subjective sampling of the resources available on the topic, but I figure those who come here regularly might have similar reading taste and interests.

I hope you’ll visit soon and let me know what you think, both about the library and what would make it more useful, and also any suggestions you have in general for Tending to Endings. I plan to continue to write here about once a month. At the end of the year, I hope to make some small changes including broadening the scope of the series a little based on things I’ve learned along the way.

Please consider sending your thoughts about topics, frequency, style, length, organization or anything at all you think will make this better. Or, feel free to tell me things you want to stay the same, too. There is a comments field below, or you can also reach me at laura@laurastavoe.com. If it is your first time you are leaving a comment, it will appear after I approve it (just to save all of us from spam comments), but future comments will appear as soon as you post.

If you are not yet a subscriber and wish to receiveTending to Endings when it posts, please include your name and email below.

Thank you for being here!

Laura Library

August 19, 2022August 24, 2022

Sharing Stories

Tending to Endings (sixty-seven)

Louise has been my friend for a very long time. When I lived in San Diego, we would meet in her beautiful backyard and talk amongst the lush greenery and blooming hibiscus. She helped me through so many of my young adult questions and anxieties about relationships and college and career and worries over nuclear war (It was the 1980s). Louise and I both stopped drinking when we were very young with the help of a recovery community, and she is in front of me in age and sobriety years. I have long considered her an important mentor.

We share a love for words—reading and writing and finding precisely the right one for the occasion—and we share quirks like a tendency to overthink and a knack for wanting to solve problems far beyond our scope of influence. No matter how serious the topic, our conversations always include laughter. I don’t mean the awkward, cover-up-feelings kind, but full-belly laughter that comes from a shift in perspective and seeing our own ego-trappings more clearly.

It was 1989, my last year as a California resident, when Louise’s husband Gordon was injured in a car accident causing him to lose mobility and sensation from the neck down. Louise’s post-accident life began in a hospital room where Gordon was not expected to survive long. As a close friend, I had the privilege of seeing parts of their story unfold.

One of the things that continually surprises me about hard stories is that from a distance they seem monochromatic—all tragedy and ending. And in some ways that is the truth—so much is ending—losses like this one are devastating and traumatic. But up close, I see that there is movement and texture and the light casts various hues over every journey.

I noticed this first in Louise. When we talked on the phone, she would start by telling me how horrible and hopeless everything was—Louise is very expressive—at times she’d even say things like she sometimes wished they had both died in that accident. And then a bit later she would come upon a weird thing that one of the nursing aides had said that was funny and that clicked with her and the laughter would return to her voice. And I felt more secure that she would make it through the day.

I was at a loss on what to offer. I was young and self-centered and often afraid. I think I mostly wanted Louise to be ok, for me. She was my spiritual rock. I had not known Gordon well before the accident, but I had had dinner at their house a time or two and got to know his intelligence and quiet sense of humor. When I visited Gordon’s hospital room his helplessness frightened me and I didn’t know what to say. But I was aware of how earth shattering this loss was for my friend. Louise and Gordon had been married 19 years. They were utterly in love. I couldn’t see a clear path through this to any kind of happiness and that made me feel guilty and worried and confused.

After months in the hospital, Gordon suffering bouts of pneumonia and hovering between life and death, the medical staff recommended a long-term care facility. The paralysis was permanent. He would remain a quadriplegic and his doctors did not expect him to live long.

Instead, Louise brought Gordon home. They bought a motorized wheelchair. Friends in our community built a ramp to the front door. A health aide came to help part time. Gordon began a slow recovery, and he and Louise began to learn how to live in these new circumstances.

I moved to Idaho, the year after that accident. Occasionally Louise would send an envelope from their address with a letter from each of them. Gordon could now type on the computer with a mouth stick. His letters were warm and intelligent and filled with details about ordinary life. I thought, He is a whole person! It was a revelation to me that this man who seemed barely conscious when I last saw him and who still could not move most of his body— was whole. I had his full voice in that letter as proof.

I eventually moved again and Louise and I fell touch for about twenty-five years. But I continued to carry Louise’s story with me.

Louise is Episcopalian and I remember once in her backyard she said, “I don’t think God makes bad things happen, but I believe God can bring good out of anything.” At the time this seemed a bit of a demotion for God—I would’ve preferred a higher power that would never ever let my spouse become a quadriplegic. But the years since, in the light of my own losses that sentence has turned to reveal a different hue. What once was: Oh please, not that God, turned to, Thank God I know you can stay sober through that. Your life can re-open even after that.

I thought of Louise often during difficult times—remembered how she continued to be open and honest through all of it. I found myself sharing Louise’s story with others at particular moments. For me it is story that keeps platitudes from being empty, story that acknowledges the texture and emotion and hard-won gains.

In 2018, I was interviewing for positions at San Diego colleges, thinking John and I might move there. During one of my stays, I tried to find Louise, which meant leaving notes with random people who sometimes saw her but did not have her contact information. About a month later, Louise sent me an email. We connected by phone and I heard her beautiful laugh and her stories.

I learned Gordon died of pneumonia in 2008, nineteen years after the accident. He was 74.

“You were his caregiver for nineteen years?”

“Yes,” she said. “But I never really saw myself as only that, so that helped.”

Louise told me she was the liturgist for her church, St. David’s, and she also also wrote (and still writes) a monthly column for their newsletter, which Gordon edited using his mouth stick. They were partners and spouses for thirty-eight years, nineteen before the accident and nineteen afterwards. She spoke of Gordon and their life together with so much love in her voice.

Louise has never been one to sugar-coat, and she continued to express how hard things had been, saying, “A lot of the time we lived suspended between crisis and chronicity!” Mostly, though, she told poignant, quirky, and happy stories about what clearly was, and continued to be, a full life. Louise was still Louise.

It was a few months after our visit that I went to help care for my mom during her decline into cancer and Alzheimer’s. My dad and I would take turns going on a walk each day while the other stayed with my mom. Often, I would call Louise as I walked the ocean path outside of my parents’ Maui home, and I never had to pretend everything was ok. Louise understood that it was not ok at all. I could spill all of my fear and utter disbelief—that my mom had to go through this painful and confusing and traumatic end—and there was so little that we could do to make anything better.

Louise’s story was different than mine. She was a caregiver for nineteen years for the love of her life. But I knew there were things she could hear that few others would know about in such detail. That we were reunited just when I needed, not only her story, but her? That was my idea of a Higher Power bringing something worthy from the rubble.

Where I was going when I started writing (what I thought would be) a short anecdote about Louise, was a reflection, maybe even an explanation, about why I share stories. Even the personal ones, and often while I am still living them and don’t yet have answers or know the way through.

John and I are now six weeks from moving into temporary housing in Salt Lake where we will await a call from the hospital telling us there is a liver that matches his blood type on the way. The prognosis is good. But we have a formidable story ahead with many unknowns. I have been sharing this journey often when I talk with friends, and occasionally here, and also on CaringBridge, a social media site designed to help families communicate during a health crisis.

Readers often mention openness as a quality of my writing, maybe saying something like, “You’re so honest!” Sometimes they are expressing gratitude and other times I am pretty sure I’m making them uncomfortable. I get that! Sometimes I make myself uncomfortable!

Even for me, the question of what to share and where is sometimes complicated, and I don’t take it lightly, especially when it involves other people’s stories.

We started the CaringBridge site originally because John—who is famous for his ability to tell stories, particularly those in which he the protagonist—got tired of telling the story of his cancer by the time he got through all five adult kids. He wants people to know and to stay in communication with family and friends, but he prefers that I write it out so they can at least have the basics before he jumps in with whatever is going on today. I am incredibly blessed to have a partner who likes my writing even when I am writing about him.

And while, yes, I tease him about his Johnny West Lore, I know we share a belief that living through hard times a bit more openly can sometimes be helpful to others, too. Not because we have answers, but sometimes it helps to see some of the terrain up close ahead of time. If so, then that helps us to feel useful during a time that can be very self-absorbing. And of course, our main reason for sharing on CaringBridge is because we want to stay connected to our community of support.

As for me, I’ve been a sharer my whole life. Over the years, I have learned to accept this quality as well as try to avoid some of its pitfalls. I question what is over-sharing—either because it’s self-centered or not relevant or too much vulnerability for the context. Or because it’s someone else’s turn! I’m sure I don’t always make the right call.

Writing is my favorite form of sharing because it slows me down enough to see the nooks and nuances of a story, the hue cast by the current light. I have a journal and loved ones like Louise and John who get my first drafts. And then sometimes, after reflection and a prayer in the form of a question–Is there anything here for someone else?–I go to the page and write as honestly as I can, usually spending an unreasonable amount trying to find exactly the right word for the occasion. Sometimes it turns into something.

I share because I enjoy it and it feels a more natural way to live for me. And to untangle confusing thoughts and feelings that seem to conflict. And as a counterweight to cultural habits that seem to isolate people unnecessarily during times of need. I share to invite others, who are so inclined, to do the same.

Louise’s story reminded me—when the details and the longevity of it rose into view—of what I have gained from the stories of others, and how they have accompanied me through some of my hardest times. It is not an exaggeration to say that the stories of others have saved me.

Louise and I talk regularly these days—I usually call while I walk on the trails behind my house and she is in her kitchen or sunny back room. John met Louise over zoom at the beginning of the pandemic and in 2021 we went to San Diego. We ate take-out Mexican in her backyard and visited next to the hibiscus blooms and the statue of St. Francis I remembered from my college years.

And then, this summer, because there is a six-month waiting period before John receives the MELD points for cancer that will move him high on the Transplant List, we were able to spend time doing things we love which included a family reunion in Mission Beach. This time, we met Louise for lunch at a restaurant on the boardwalk with windows looking out onto the Pacific. I don’t even remember what we talked about that day—we talk so often now—only that it was so very good for the three of us to be sitting around a table together.

I share to remember what matters, and what lasts. I share so that when the details of our stories overlap, even miles apart and years later, we can find each other.

Tending to Endings aims to build community and conversation around end-of-life matters. If you would like to subscribe, please leave your name an email below and it will arrive in your in-box about once a month. You can leave comments below, and you can also reach me at laura@laurastavoe.com. Thank you for being here. Laura

May 22, 2022May 23, 2022

Retracing Steps

Tending to Endings (sixty-five)

In my last post, I wrote about learning my husband has liver cancer, and so it seems only fair to begin with a brief update on our medical journey. Many of my readers know John and while I also have a Caring Bridge site set up for those who know John or want to follow to learn more, this will give an overview which leads into this post’s topic.

John and I have spent much of the past three months going through the very complicated preparation for him to be approved for a liver transplant. It has involved four trips to Murray, Utah (five hours from Boise) dozens of medical tests and interviews, and five outpatient surgeries. I will write more about this someday when I am not so tired from having just lived it, but it is a relief and a joy to report that John has been approved for transplant by the team and our insurance. He is officially on the list.

Because cancer affects the liver differently than some of the other reasons for transplant (It’s complicated, and not all bad for us that they do it this way) there is a six-month waiting period before John will be moved up to a priority spot where he is likely to receive a liver. That will be October 1, and therefore, we plan to move (temporarily) to the Salt Lake City area to await transplant at that time. We of course don’t know how long we will be there, but from what we have learned so far, we expect it to be between two and six months, including wait time and recovery.

In the meantime, John is doing well. The tumor has been zapped by microwave ablation and is now an empty crater and moon dust (not the technical term). He still feels no symptoms from the cancer or cirrhosis. He is playing tennis at least four times a week, and working from home part time as he was before all of this. We are both feeling very grateful to have made it through the transplant prep process and for all the love and support we have received from so many.

John on one of our walks between medical tests in Murray, Utah. March 2022.

I was talking to my friends about how sometimes I function better in the intense time of a crises than after the worst of the danger has passed. Like the stories (maybe urban myths) of people who receive super-human strength when they need to lift a car to save someone’s life. For three months the priority in our life was very clear and I was very focused. Now that John’s prognosis looks good and we have some room to move about, my decision-making skills have unspooled. Do I go for a walk or finish my ethics paper or catch up on laundry? Do we go camping or to visit friends or have the kids over? I have about eight books by my nightstand, and three on audible and I am likely to switch from one to another mid paragraph. Seriously, one reason I haven’t written here in awhile is each time I start an essay I can’t decide what it is about.

And what is it that I’m doing with my life again? How did I get to be a person writing about death and going to chaplaincy school and using the term end-of-life in regular conversation? And there are so many threads to this life project that may or may not turn into vocation. Do I work on my book, my blog, or my research paper? Do I make a plan to get back to hospice volunteering first or teaching. I’m keenly aware that time and energy are limited resources and so these decisions feel weighty.

Deep down I know myself well enough to realize this is grief and it will pass. So many things are put on hold or slip away when cancer becomes the story. I am both grateful things are going well and very sad that my love has a life threatening illness. People respond to grief differently and for some reason one of my biggest symptoms is difficulty making decisions.

Yesterday, during my morning meditation, something I read made me think, rather than trying to figure where I am going, maybe I should retrace my steps.

This brought me back to a moment in my kitchen when I did know what I wanted to do next and began moving towards the end-of-life field. The full arc of the story, of course, is longer than one moment, a series of deaths of women I was close to in a few short years. The moment of decision that comes to mind, though, was when I was sitting alone at my new kitchen that John had remodeled it to bring in more light; I had just returned home after six months living the confusing, beautiful, excruciating journey of my mom’s decline, and her leaving. I felt like I had visited terrain I had been unaware even existed. I could’ve used a guide, I thought, some preparation, a few anecdotes from those more familiar with the landscape.

When I imagine where this place is, Alaska comes to mind—or what I imagine Alaska to be as I’ve never been there, either. I envision land steeped in ruggedness, days so long they are surreal, nights that never end. I envision weather that changes without notice and beauty dangerous enough to require guidance to enjoy. Or even to survive.

Only, this place that I had now visited three times was somewhere we are all destined for. For most of my life I was okay not thinking about that very much. And then I stood next to the bed as Susan and then Ellen and then my Mom crossed that rugged, strange terrain and death got my attention.

That day in the kitchen I had some vague notion of eventually providing a space for resources and workshops and community. I’m still unclear. There are practical and emotional and spiritual questions surrounding death—all of which seem to overlap on top of one another during times of crises and loss. There are a thousand small decisions and a few big ones and you have no idea which ones you’ll get until they start to glimmer into view. It seems we could help each other with that but it would require acknowledging that someday we will die.

I am from a family of passionate readers. When I was a child, my grandparents read to all the grandchildren regularly and its one of my fondest memories of time with them. I can still hear the unique cadence of each of their voices as they read. My grandma died when I was a teenager, but my Grandpa Vic lived until I was in my thirties, and we often traded book titles and talked about writing and literature over the phone or through letters. When he died of cancer, I was in the middle of reading Stegner’s Angle of Repose and I so wanted to be able to send him a copy. That is what death is, I thought. It’s not being able to read the next book no matter how good it is.

And as I write all this down I suspect that the other reason I can’t decide what to read or where to camp or what I want this post to be about is because with mortality so vividly on the horizon, I want to read and write and live all of it. And I want to do so meaningfully. And deeply. Which of course is an impossible order, but also casts this indecisiveness in new light. There are worse problems to have during a difficult time than to want to be fully alive.

This retracing of steps did not divine my future or even clarify which project I should start next. But it reminded me that this journey I am on started from a place of desire–to be helpful yes–but also because for some reason, I’m really interested in in Alaska.

More Resources

This month I listened to two audio books recommended by friends. The first is Ann Patchett’s Precious Days which is beautiful and honest and includes a number of essays about loss and mortality and love. Her writing reminds me that one of the reasons we need more stories about end-of-life is that people are different in how they experience similar events. There are plenty of places I identified with Patchett, and then others where I am reminded of how different we all are, too, and how a talented, honest writer can help me see and understand a wider emotional range. This makes me feel more empathetic, but also more connected. It is such a generous book.

And then, interestingly, the day after I finished Patchett’s essays someone else recommended What We Wish Were True: Reflections on Nurturing Life and Facing Death by Tallu Schuyler Quinn. Quinn also lived in Nashville, and Patchett’s bookstore hosted an event for her family and her book just last month. What We Wish Were True is a gorgeous love letter that Quinn wrote after receiving a terminal cancer diagnosis at age 40. I have to remind myself to breathe while I’m listening; it is exquisitely beautiful and painful in turns, and it is full of wisdom. There is so much more I want to say about this book so I will likely dedicate a Tending to Endings post to it in the future.

Thank you for being here,

Laura

Tending to Endings aims to build community and conversation around end-of-life matters. If you would like to receive Tending to Endings each time I post, please leave your name and email below.