As personal as some Tending to Endings posts have been, I have not aimed for it to be a series where I spool out what is going on in my life while it’s still raw. Those blogs are probably more true to the form. But when something big happens in my life, I tend to traverse huge expanses of thoughts, feelings, insights in ways that are disjointed. It’s hard to know where I’m going to land and what is just anxiety and grasping and noise. So generally, I begin in my journal or with close friends who know to not put too much stock in anything as I verbally wander and epiphanize through the early stages of whatever just happened. Instead I tend to see how events take shape and then write something more akin to a personal essay that I hope might also be useful to others. There was a time when I wanted to be a columnist—Mike Royko and Erma Bombeck were my favorites when I was a kid—and Tending to Endings has let me play at that a bit.
But, two weeks ago, while I was in Maui visiting my dad, John called from Idaho to let me know the MRI results showed the mass in his liver is cancer. I was already staring at my phone because he had promised to call as soon as he came out of the appointment. We knew it wouldn’t be great news since the doctor invited him into the office for the results. I expected more tests, or the cirrhosis is worse, or we need to do a biopsy. But, I learned that afternoon that liver cancer can be diagnosed from an MRI. John’s voice over the phone was relaxed. He was as surprised as I was. All this had started with a wellness exam and none of it seemed real.
John and Laura in Maui last May
As I’ve contemplated what or whether to write this month, I’ve realized that what is going on is a little too relevant for me to ignore. I’ve been writing Tending to Endings for just over two years now, and though the readership is still modest (150 subscribers), you are steady! Some of you have been friends for years or family forever, and and others have been referred here because you are going through a time of loss. Or maybe you found me from a Facebook share, which probably means you are friends with my sister Amy. No matter how you found this blog, I’m glad you are here, and anytime someone takes the time to read something I have written, I am touched and appreciative. It felt important to write this post, even though I don’t yet know the shape of the story or how it might be useful.
Like many medical stories, this one already contains reasons to be hopeful as well as complications. On the good side, John is very healthy and active and doesn’t drink (hasn’t since 1988); it looks like the cancer began in the liver and has not spread; he is currently symptom free and playing tennis daily. On the complicated side, John has prior liver disease advanced enough that the tumor cannot be surgically removed without risking liver failure.
On Thursday, the surgeon referred us to a liver transplant center in Salt Lake, and we are currently researching options and awaiting that appointment. Due to the cancer diagnosis, the surgeon believes John will be placed high on the list. The upside of the transplant is that it offers the best chance of living a cancer-free life and John will have a new liver. On the downside—my husband needs a liver transplant!
I know many of you are at some point on your own hard journey or have just gotten through one or know someone who is going through something painful and full of loss. I don’t have a lot of insight to share yet, though, being me, I’m collecting observations that may someday turn into some post about surviving the first couple weeks after getting really horrible news.
For now, I’m remembering how overwhelming medical news can be. There is the worry over the person you love and then the way the axis of your life suddenly changes to a whole new plot line that includes a mountain logistics to navigate all with a hurting heart and brain that is not operating at full capacity. I didn’t even know how to manage getting home from Hawaii quickly much less helping my husband through a liver transplant. But I did make it home just in time for the first oncology appointment, which is a story of kindness and grace that I will save for another day.
John, by the way, is doing much better with all this than I am. The hardest thing for him is not being able to go out in the garage with his tools to fix his liver himself as is his usual way. But, the other day he came in from tennis and told me that he was in the car listening to music and a wave of pure joy for being alive came over him. “That happens to me a lot,” he said, “but I didn’t know it would still happen after news like this.”
That still happens for both of us.
We are at the beginning of a journey that we would not choose, but we are both seasoned adventurers. I will probably be writing about it here though I don’t know in what form or when. We have set up a Caring Bridge site to let our friends and family know more details as we learn them. You are welcome to visit there. Thank you for being part of our community. We know know we have so much love holding us.
John and Laura, Leslie’s Gulch, ID January 2021
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Letting go is a common theme at the end of a year. At least three friends have mentioned burning bowl ceremonies recently which offer a ritual to consider worries or habits or relationships we intend to release. And objects, too. I go through closets and cabinets, and John is cleaning out the garage each afternoon—finding things to give away to make more room.
I am reminded by my sweatshirt, which is worn and faded, but still my favorite to slip into mornings when the house is cold, that there is a keep pile, too, even from these pandemic years. I want to carry forward this renewed admiration for simplicity: The way make-do yoga class on the lawn with friends can turn into my favorite way to do yoga. Or the joy I get from seeing how the library in our backyard along the trail evokes smiles.
This year, along with clothes and books to re-home or reread, I have a lot of index cards with words authored by others scattered around my office, used as bookmarks, or piled into stationary boxes where I someday intend to do something with them. Sifting through them now is slow going, as I remember all I’ve read, all I want to someday write.
And I know exactly where this tendency comes from! My mom was a collector of words. Before I could even read, we memorized favorite poems by Robert Louis Stevenson and recited Madeline like a duet. When I was school age and the new Reader’s Digest arrived, Mom and I would read our favorite “Quotable Quotes,” aloud to each other, me sitting on the shag carpeted stairs, my mom on the couch staring out at the trees. It was there I was introduced to Carl Sandburg and T. S. Eliot and Margaret Mead!
Later, Mom gathered quotes into books she called Borrowed Wisdom that my dad printed and bound using his recycled calendar company materials. She would pass them along to us at Christmas. Mom wrote her own poems, too, but I think finding quotes that illuminated the truth she carried inside her gave her hope and a sense of connection.
In past years, I’ve included a list of books I’ve read and loved from the prior year in a post. With school, that list is skewed and sprawling in ways that makes it more difficult for me to know what to include. Instead I’ve decided to share some of words that prompted me to grab a pen and index card mid-page, a curated collection from the keep pile.
Borrowed Wisdom 2021
Ancestors
The world today is just as full of sacred presence as it was centuries ago. With the hardening of our minds we are no longer able to feel and sense the ever-present sacred the way our ancestors did. We desperately need to retrieve our capacity for reverence…we let our days fall away like empty shells and we miss all the treasure.
John O’Donohue, Eternal Echoes: Celtic Reflections on Yearning to Belong (76-77)
Walking I am listening to a deeper way. Suddenly all my ancestors are behind me. Be still, they say. Watch and listen. You are the result of the love of thousands.
Linda Hogan, Dwellings: A Spiritual History of the Living World (159)
Our stories from the oldest days tell about the time when all beings shared a common language–thrushes, trees, mosses, and humans. But that language has been long forgotten. So we learn each other’s stories by looking, by watching each other’s way of living. I want to tell the mosses’ story, since their voices are little heard and we have much to learn from them. They have messages of consequence that need to be heard, the perspectives of species other than our own. The scientist within me wants to know about the life of mosses and science offers one powerful way to tell their story. But it’s not enough. The story is also about relationship.
Robin Wall Kimmerer, Gathering Moss: A Natural and Cultural History of Mosses (vii)
I wash her neck and lift the blankets to move down her heart. / I thank her body for carrying us through the tough story.
Joy Harjo, “Washing My Mother’s Body,” An American Sunrise (32)
Toward the end of her brilliant career, Kübler-Ross was convinced that there really is no death, only a leaving of the body to take another form. Like those who believe in an afterlife, resurrection, or reincarnation, death becomes, then, not an end, but a new beginning. These insights, however enlightening, do not change the fact that in death we surrender our embodied life on earth. Love is the only force that allows us to hold one another close beyond the grave. That is why knowing how to love each other is also a way of knowing how to die.
bell hooks, All About Love (202)
Action
We are capable of bearing a great burden, once we discover that the burden is reality, and arrive where reality is.
James Baldwin, The Fire Next Time (91)
We cannot name or be named without language. If our vocabulary dwindles to a few shopworn words, we are setting ourselves up for takeover by a dictator. When language becomes exhausted, our freedom dwindles–we cannot think; we do not recognize the danger; injustice strikes us as no more than “the way things are.”
Madeleine L’Engle, Walking on Water: Reflections on Faith and Art (30-31)
If we really knew how unhappy it was making the whole planet that we all try to avoid pain and seek pleasure–how that was making us so miserable and cutting us off from our basic heart and our basic intelligence–then we would practice meditation as if our hair was on fire.
Pema Chödrön, When Things Fall Apart: Heart Advice for DifficultTimes (104)
So the practice is not to fight or suppress the feeling, but rather to cradle it with a lot of tenderness. When a mother embraces her child, that energy of tenderness begins to penetrate into the body of the the child. Even if the mother does’t understand at first why the child is suffering and she needs some time to find out what the difficulty is, just her act of taking the child into her arms with tenderness can already bring relief. If we can recognize and cradle the suffering while we breathe mindfully there is relief already.
Thich Nhat Hanh, No Mud, No Lotus: The Art of Transforming Suffering (27)
If we merge mercy with might, and might with right, / Then love becomes our legacy, / And change our children’s birthright.
Amanda Gorman, The Hill We Climb (25)
Freedom is only part of the story and half of the truth…In fact, freedom is in danger of degenerating into mere arbitrariness unless it is lived in terms of responsibleness. That is why I recommend that the Statue of Liberty on the East Coast be supplemented by a statue of Responsibility on the west coast.
Viktor Frankl, Mans Search for Meaning (132)
What happens when they realize that the Americans don’t actually care about this? “Well, do you think they don’t?”If they did, I’m sure I wouldn’t be the one making this clear to the Salvadorans. “You’re right. That is an excellent observation, but don’t worry. No one is going to admit having listened to a poet. That is your protection. Now try to get some sleep.“
Carolyn Forché, What You Have Heard Is True: A Memoir of Witness and Resistance (185)
Spirit
The poem Death finally conjures up the moment (while I was standing one night on the beautiful bridge in Toledo) a shooting star which fell through outer space in a taut and slow curve passed at the same time (how shall I put this?) through inner space: The dividing contour of the body was no longer there.
Rainer Maria Rilke, The Dark Interval: Letters on Loss, Grief, and Transformation (24)
All too many people attempt to face the tensions of life with inadequate spiritual resources. When vacationing in Mexico, Mrs. King and I wished to go deep-sea fishing. For reasons of economy, we rented an old and poorly equipped boat. We gave this little thought until, ten miles from shore, the clouds lowered and howling winds blew. Then we became paralyzed with fear, for we knew our boat was deficient. Multitudes of people are in a similar situation. Heavy winds and weak boats explain their fear.
Martin Luther King, Jr. “Antidotes to Fear,” Strength to Love (127)
As I grow older, I discover more and more that the greatest gift I have to offer is my own joy of living, my own inner peace, my own silence and solitude, my sense of well-being.
Henri Nouwen, Life of the Beloved: Spiritual Living in a Secular World (113)
God is both intimate and ultimate.
Richard Rohr, Just This (64)
Know that your vision will follow you back and must be incorporated into your life and the lives of those you know. The best way to communicate your experience to others, says [Steven] Foster, is not to talk about it but to live it. “Vision if it is anything, is your life story in action.”
Greg Levoy, Callings: Finding and Following an Authentic Life (162)
And we might, in our lives, have many thresholds, many houses to walk out of from and view the stars, or to turn and go back to for warmth and company. But the real one—the actual house not of beams and nails but of existence itself—is all of earth, with no door, no address separate from ocean and stars, or from pleasure or wretchedness either, or hope, or weakness, or greed.
Mary Oliver, Long Life (24)
This is why we love the earth, honor the human body, and bless the stars. Religion is not just a matter of things unseen. For us the Holy is not hidden but shows its face in the blush of the world’s exuberance.
William F. Shultz, quoted by Forrest Church in Chosen Faith (193)
The final verse is always the trees.
Joy Harjo, “Exile of Memory” An American Sunrise, (13)
More Resources
When People Change Their Minds, a recent NYT guest essay by a palliative care expert, mirrors what I have often heard from those who work with the dying and facilitators of Death Cafés: the most important end-of-life planning is to select a health agent who knows you well and understands what is important to you. I might add, to have conversations about end-of-life matters early and often with those you love, so it isn’t so hard to talk about when someone becomes sick or when circumstances and perspectives change.
My Art, Religion, and Contemporary Culture course included an incredible materials including films about extraordinary artists that broadened my perspective considerably. I’ve listed three below that especially spoke to me, but there are many others that I included on my Library II page. With thanks to my UTS Art Instructor, Dr. Jennifer Awes-Freeman for introducing me to these and so much more.
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I am at my computer where I’ve been all afternoon. Patty’s voice over the phone sounds concerned.
“Richard just got home and says there’s a fire by your trails.”
I stand to look out my office window and see billowy smoke just over the ridge. The ridge where Patty and I hike each week and I walk every day, a brisk two minutes from my backdoor. In between those two points, grows sagebrush, some native grass, and lots and lots of cheatgrass, all of it crackling and dry. It is October 6 and the wildflowers have long withered. I cannot remember the last rain.
I remind myself things on the horizon often look closer than they are. I open the slider from our living room and walk out back, Patty’s voice still up to my ear. The winds are erratic, the kind that sends tumbleweed tumbling; the kind that breathe flames to life. It is hard to tell what way the fire is moving.
“It doesn’t look good,” I say, “I’m going to try and get more info.”
I have one of those 21st century moments where I’m googling on my cell phone for information about the smoke I see with my eyes. I find nothing. I hear sirens. My heart rate quickens.
It’s never time to panic, some inner voice says. Think. Pray. Water.
I dial John while heading to the garage.“Call me when you get this,” I tell his voice mail, “There’s a fire in the foothills.”
John is playing tennis on the other side of town, his phone in his truck. I will continue to try to reach him every five minutes.
I go to metal box in the garage that contains the automatic sprinkler controls, aware of things I should pay better attention to, like when John shows me how to reset the sprinkler system in case I ever need to when he’s not home. I see an array of buttons and knobs. I flip switches, and turn dials until I hear the familiar whoosh running through the lines and the start of the rotation.
I walk to the backyard and crank open the faucets on the house, flop hoses as close to the stupid junipers as I can get them. We are grateful to Beryl and Otto who built this house in 1980 and cared for it until we got here a little more than three years ago. The house is sturdy and came with fruit trees in the back and tall pines on the western edge of the yard.
But the junipers—which will take heavy equipment to yank from the soil—are not on my gratitude list. We’ve been meaning get rid of them ever since we moved in because they are scraggly and overgrown and, as the fire-wise websites inform us, they are among the least fire-resistant plants due to their lacy leaf structure and volatile oils.
I walk into the house and I grab my computer and John’s and set them in my car. I pack passports and car titles and the wills John I just signed. It turns out in a crisis, I’m not sentimental–I do not pack photo albums or my mother’s tea set–but I know how much I despise bureaucratic paperwork, and I don’t want to redo it.
I back the car out of the garage and turn it around for a quick exit, toss keys on the seat. Patty has pulled in the drive and is asking what she can do. We walk to the backyard and she picks up the hose and sprays the junipers, the dry grass.
My neighbors, Rob and Daryl are next door in their garden. Rob, walks over.
“What are we doing?” I ask as though there is a joint plan.
“If the flames come over the ridge, we’re going to leave.” They have dogs and two daughters and turkeys and hens that lay eggs in our yard. “Mike says, for now the winds are in our favor.” Mike another neighbor, has worked for the Bureau of Land Management.
“The winds feel all over the place,” I say.
“Right!?” Rob nods, “And you and I both know this is a tinder box back here.”
Finally I hear a helicopter overhead and look up to see it pulling the tiny bucket of water towards piles of smoke and flame. A police SUV makes its way up the wide trail past our backyard and the officer tells hikers and bikers to leave the area. It has been about twenty minutes and the calvary has arrived. I notice how small they seem up against the long giant cloud of smoke and the vast expanse of brown hillside.
I see the glow of orange flame licking the ridge.
We might be homeless, I say to myself. Though the word, doesn’t quite sit right. We might lose our house. That is true. And I have the twin sensation knowing how awful this is and how lucky I am at the very same time.
I walk back in. This time I grab underwear, sweat pants, tee-shirts, my contact solution and glasses. If I have to stay at someone else’s house, I at least want to have clean underwear and clear vision.
John has finished tennis, seen my twenty-three missed calls. I tell him over the phone that I have turned on the sprinklers and Patty is here helping water. I have packed our computers and paperwork. I ask what else.
“It sounds like you have done all the right things,” he says. “I’m on my way.” He assures me it will take time even if the flames come over the ridge. I don’t quite believe him.
“Anything else you want me to pack in the car?”
“No.” he says, and then, “Did you get my guitar?”
I walk back in the house. The wood from the piano flashes at me from the living room, the piano my sons learned to play on. Out of the corner of my eye I see the tiles John’s daughter fired in her kiln and that our kids set into the kitchen wall during our last Thanksgiving together, pre-Covid. The year we dined on Indian take-out while the grout dried.
I see now, but I cannot afford to think of all we will have to grieve. I walk out the front door lay John’s guitar in its black case across the backseat of my Subaru.
Thanksgiving at the Prairie House 2019
By the time John gets home, there are bulldozers on the ridge and the plume of smoke is making its way northeast of us towards other homes. A stray spark from the smoldering embers could still set fire to the hillside, but our house is no longer in the direct line and at least four city fire departments have arrived.
By 8 o’clock we are without electricity but feeling out of danger for ourselves. We worry about neighbors to our east who have had to evacuate. John and I play Scrabble by flashlight. We realize the network news has aired when friends from all over the Boise Valley text me to see if we and our house are ok.
By ten pm the flames are out and all the residents are able to return home.
This was not the first time I packed a bag to leave home with my heart racing and fear for my well being. The other is a story I don’t tell often or even think of much anymore. But it came forward during those moments I spent packing and illuminated things I don’t think I saw decades ago, when I left my first marriage and before I had children. And of course this is very pared down version of a complicated story:
While in my twenties living in San Diego, I was driving home from my new teaching job one afternoon trying to figure out if my husband really might kill me or if I was overreacting. A thought came that was more like the bright flash before a migraine than an everyday thought: I’m wondering if my husband might kill me. That’s not normal.
When I got home, I called my mom in Chicago from the back bedroom, whispering into the phone even though I was the only one home. My mom asked only one question. Did I have somewhere I could stay that night? This surprised me. I hadn’t told them much. It was a marriage after all. I thought there would be more questions. She told me to grab only what I needed and leave. I took random clothes and my wallet and headed to a friends.
For a few months I did not have a stable address. The threats and stalking continued for some time, and for years I remained on hight alert and half afraid. But I had so many friends willing to give me a guest room. I had access to counseling. I had parents in Chicago who would’ve gladly had me move back. I always had a kitchen table where I could unravel, places where I felt more at home than the apartment from which I’d run.
Eventually less than two years later, I moved to Idaho rather spontaneously and for variety of reasons. Once here, I noticed I was less afraid. I stopped looking for a particular shape of headlights in the rearview mirror. I made new friends, taught in a new school, grew a new life.
About two weeks after the fire, rumors were confirmed. The blaze was started by teenagers setting off fireworks. Thanks to multiple fire crews, no homes or animals or people were lost. Four-hundred and forty acres of land and trail system burned. The brush and sage will recover. We were all very lucky.
When I walk along the ridge now, I see scorched earth on one side and the beauty of Boise’s autumn trees on the other. There is something—not comforting, exactly—but grounding about having both so clearly in my view. I almost wish the scar from the fire was more visible from town. You have to hike up the ridge to see how close this fire came to the edge of us. It’s easy to think the danger has passed as if it couldn’t happen again next summer or tomorrow.
We are all vulnerable in the face of wildfire or hurricanes or the threat of violence or cancer or Alzheimer’s or death. And yet, in moments when this frailty comes most into focus, I am also aware of what I have. The things that won’t burn down.
Had we lost our house, I would have many kitchen tables where I could be myself as I wept. House or no house, I have places I belong including inside my own body, my own marriage, my own community.
The truth is that the winds have always been in my favor. I have had and always had layers and layers of safety net, many of them since birth. I have to participate to maintain relationships, but I have had one hell of a running start.
Loss in these conditions is different than losing a home when everyone you know is also living on the edge of poverty. Or when you are new to a country. Or when you have fled abuse and no one in your community believes you.
My questions for myself these days have less to do with how do we build emergency shelter and more to do with how can I help make sure that in my community people have places where they can be themselves in good times and in times of loss. It feels like a complicate question that will take me time to know.
November is a month of giving thanks for many of us. It is also my birthday month, having made now fifty-seven trips around the sun! What a gift it is to be here.
As a small way to celebrate, I am making donations to nonprofits in my area committed to providing community and support as well as secure housing to those in Boise going through challenging times. I welcome you to join me! Or to give in your own community in whatever way is most meaningful. In the meantime, I will be following my question about what my own role is in nurturing a beloved community in my home town.
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The first Friday of October snuck up on me! I thought of postponing Tending to Endings. I have many ideas to write about. Just less time to go through my rather organic process, which begins with a big sprawl of words and ideas and tangents and then slowly over a number of days becomes shaped into something that others might be interested in and able to read!
Writing Tending to Endings also feels weighty this month. Death is a relevant and painful topic in Boise and much of Idaho. The ICUs are overwhelmed with COVID patients and the coroners and hospital leaders are past pleading. They are in despair.
If the models are correct, cases will not peak until mid October. I am frightened by the trauma so many in our community have had to face, especially our healthcare professionals. I don’t understand the mental rift that has happened in my own community, and I don’t yet know how to write about it other than to say please get vaccinated if you have not already.
I am so very sad about the unnecessary deaths, and how many have occurred isolated from family and friends because of COVID. And I am worried about how these experiences are going to affect the people on the front lines who have been carrying so much of the weight for eighteen months and are now facing the worst conditions yet. I have nothing wise or helpful or new to say about this, but it felt wrong to not say something.
Prayer wheel at Sawtooth Botanical Garden in Hailey, Idaho
I knew you’d understand if I postponed. I feel like I have the kindest readers on the planet.
But then my students started turning in one of their assignments for my Aspects of Death and Dying class this week, and I have to say it felt a little like magic. I gave them a simple assignment: sit down with three people they know (one at a time) and ask each to tell an experience about a time they learned something about death. I asked students to record their conversations and turn in recordings between five and fifteen minutes each.
To provide a model for my students, I asked John to tell a story about an experience where he learned something about death.
John talking about his mom’s death.
As soon as I began listening to what my students turned in, I realized that it was fulfilling a little dream of mine. They talked to their parents and neighbors and classmates and their own children about some of their most important stories.
I often include a tagline at the end of my post: Tending to Endings aims to build community and conversation around end-of-life matters. Yet I admit, mostly this blog has been a lot of l me talking! Comments features are clunky and asynchronous. We have been more isolated than usual. It’s hard to actually find ways to converse. But I suppose my hope is that what you read here might help you open conversations with those who are in your daily life.
Along those lines, I want to invite you to this assignment, and I hope you’ll dive in! It is not a new idea, of course. Story Corp has been capturing conversations for decades now, and they have helpful info on their website.
But, as I reminded my students, those stories are edited and produced and aired, whereas their recordings have the aim of opening a conversation and saving it for their own purposes. Stumbles and backtracking are fine. All they really need is a person to talk to and recording device, which these days usually means a smart phone.
The results so far have been beautiful. When I listened to my students’ stories, I knew they were hearing things they might not have heard if not for this assignment.
Or maybe they would have. I have talked with John about his mom’s death many times during the twenty years we have been together, after all. But this conversation and the others I’ve recorded have felt different. As though setting the record button to on is a way of marking sacred space. We speak and listen more intently. I listen again. We tend to this story, and find it worth saving.
More Resources
For you, there are no requirements or deadlines! But if you want to know the details or where this is going, here they are. (You’ll have to expand the text if your eyes are like mine).
I’d love to hear any feedback from you about how your own conversations went!
Thank you for reading Tending to Endings. If you would like to subscribe, please leave your name and email below and you will receive it by email on the first Friday of every month. Tending to Endings aims to build community and conversation around end-of-life matters.
In preparation for classes at United Theological Seminary (UTS) next week, I received a list of questions to ponder before orientation. One read, “If you came with a warning label, what would it be?”
Which brought to mind a memory from my grade school years of standing on the slippery tiles at the base of the high dive at Kopp Pool in Des Plaines, Illinois. My friend Amy Ayers is next to me and she says with a sigh, “Laura, do you always have to be so deep? Can’t we just have fun?”
I don’t know what I said to garner that response, but given my intense fears about high dives and what others thought of me, my guess is that I was trying to make a philosophical case for why getting out of line for the three-meter board was actually the brave thing to do.
Even at age ten I warranted a label: Ill-equipped for small talk.
My making it to middle-aged as a relatively happy person has involved some combination of acceptance and balance and having good friends who can make me laugh. And when I think of that day on the pool deck in the context of my current work–writing Tending to Endings and volunteering for hospice and beginning a chaplaincy program–I do laugh.
Not everyone wants to address the meaning of life in every conversation, but I seem to have found places where it is the natural thing to do!
This month I return to College of Western Idaho to teach in the Social Studies Department, I start graduate school for the first time since the 1980s, and I begin hospice visits as a volunteer at St. Luke’s Hospice. For someone who writes about endings, I’m immersed in a whole lot of beginnings!
In preparing for this new work, I’ve come across so many things I want to share here. I’ll start with three finds that have been particularly helpful.
This American Life: In Defense of Ignorance
As I’ve prepared my CWI course, “Psychosocial Aspects of Death and Dying,” a friend reminded me of Lulu Wang’s story which first ran on This American Life in an episode called What You Don’t Know (30 min).
Wang is troubled by her family’s elaborate plan to keep a cancer diagnosis secret from her grandmother (the person with the cancer). Family members fake medical test results and quickly plan a wedding so that family members have a reason to travel to China to see Nainai (Wang’s name for her grandma).
In this short passage Wang explains how her aunt (named Little Nainai) justifies the secrecy:
Little Nainai told the doctor that Nainai is too old, that she couldn’t handle a blow like this. It’s not just that Little Nainai didn’t want to upset her sister with the news of her death. She actually believed that not telling her was a way to prolong her life. Knowing Nainai’s personality, Little Nainai worried that her sister would get overwhelmed with fear and depression. She’d stop eating. She’d stop sleeping. She’d lose interest in life. The Chinese believe that mental and emotional health are completely linked to physical health.
Mom with her sister, Carol and my sister, Amy.
The story reminds me how many factors influence how we think and feel and act about death: culture and generation and geography and personality and particular circumstances. And the part that resonated most with me was how even values that I considered foundational and clear looked different amidst the particulars of my mother’s illness.
If you asked me whether you should tell someone of their own terminal diagnosis I would say of course!
But when my mom was given a cancer diagnosis while she was also in the grips of Alzheimer’s, things didn’t feel as clear. Mom was in the room when the doctor explained that her cancer was not curable, so she heard it. But by the time we made it to the parking garage of the hospital, the information was foggy and by the next day, she had forgotten it completely. And it wasn’t just memory, but also her ability to process and cope with the information of her condition–both the Alzheimer’s and the cancer–was different on different days.
Before this I knew honesty and directness weren’t always easy, but now I didn’t even know if they were the right path. Do I keep reintroducing painful information when Mom would have to go through the pain of processing it again, and again, and again? What about when she asks why she is hurting? Do I tell her then? What about when she becomes more agitated after I tell her? Do I do something different next time? How important is it at any given moment that my mom understands she is nearing the end of her life?
I was never fully able to reconcile those questions in a way that was satisfying to me. Mostly, I bumbled my way through, doing the best I could to give my mom the information she seemed to want to know when she asked.
Towards the end, I sensed that at some level below the Alzheimer’s, my mom knew and made peace with her own leaving. But this was not a knowing that had anything to do with talking it through. Instead I felt it in the changed cadence of her breath, her relaxed brow, the way the corners of her mouth turned toward laughter in her particular Jane way. It wasn’t because I said the right thing, but it happened, and for that I am grateful.
Call to Care
I’m reading The Call to Care: Essays by Unitarian Universalist Chaplains edited by Rev. Karen Hutt (who is also our Vice President of Formation and Vocation at UTS!), and I could easily pull quotes from any of the essays, which tend to take on the very questions I have about the role of chaplaincy. But this passage from Nathan Mesnikoff’s “Lost (and found) in Translation,” has stayed with me:
Philosophers and theologians have debated for ages what knowledge we can have of the world, let alone for the complexities of another’s heart and mind. There is always a gap. Indeed, one of the first things we are taught [as chaplains] is never to say, “I know how you feel.” I don’t know how you feel, or how you understand death or God. I don’t know what this particular moment of suffering, which you happen to be present for, means to you in the context of your life and faith.
So I reach out across that gap and do three main things. First I bear witness through unflinching presence. I don’t turn away from your suffering, remorse, guilt, or anger. Second, I ask what this experience means to you. Where does this episode fit in the narrative of your life? Third, I try to help you connect with sources of strength and hope, whatever they may be: organized religion, disorganized religion, hiking, schnauzers, grandkids, whatever. Many people have no one who can effectively do these three things, these acts of human love and compassion.
One of the things I loved most about this quote is it named things I can practice in my relationships today that don’t require any special degree or certificate. They require a deep breath, maybe, a little courage, a willingness to be present with another in the face of uncertainty and pain and the things we cannot fix. Given how much is going on in the world and in the lives those I know, it’s good to have a place to start.
Heart & Soul: St. Luke’s Home Care and Hospice
Writing has long been my creative outlet, but so often words fall short. The above article in Heart & Soul: A Newsletter for St. Luke’s Home Care and Hospice Volunteers, reminds me there are other options.
After years of service in the downtown St. Luke’s hospital, Barbara Beck began sewing memory bears for hospice patients and their families in 2005. Since then, she has sewed over 1000 bears. Suddenly, I wish I knew how to sew! What are words when you could have a bear made from the soft garments worn by loved ones?
Many hospice providers have programming around the arts. Volunteers sing in traveling choral groups. High school students interview elders about their favorite music and bring iPods with special playlists. People gather to create prayer shawls or quilts or memory boxes. And of course there is a long tradition of friends and family bringing comfort food to the porch.
I currently am not practiced in any art form other than writing, but I would love to have an alternative for those times when there truly are no words. I don’t think I have enough time left on earth to master the sewing skills necessary for bear making, but it is a goal of mine in the next year to explore some other small (imperfect) offering I could create that doesn’t rely on sentences. I’ll let you know how it goes!
It means a lot to me that so many of you keep returning here! Please feel free leave comments or add your own resource suggestions below. You can also reach me at laura@laurastavoe.com. If you would like to subscribe leave your name and email below, and you will receive Tending to Endings on the first Friday of every month.
