Saying More

Tending to Ending (thirty-five)

Two weeks ago, when I wrote about CaringBridge, I typed out the name of the cancer my mom had and then I pulled it out again before sending out Tending to Endings. I questioned this decision–this is a blog about talking about things after all–but I hesitated because it seemed unnecessary for the point of the post, and it’s a cancer that is not easy to drop easily into a sentence without feeling the need to say more.

Ultimately, I decided that I would instead write another post about how certain diseases carry stigma that make them difficult to talk about, which of course can ultimately lead to more isolation during a time when community support could help the person and the family.

It makes sense that I would hesitate before putting medical information about my mom on the internet. There is a spectrum between public and private and posting on the web falls to one extreme. But stigma goes beyond that—it makes us hesitate even among close friends and family. It makes us question whether we are betraying a person by mentioning their struggle.

Alzheimer’s of course is one such disease. Many people feel they need to hide the symptoms. For my mom this tendency started in earnest only after she had lost some of her capacity to make decisions. In the beginning of her disease which was first called a mild cognitive impairment, she would be very direct. When someone asked a question she couldn’t answer, she would often say, “I’m having a problem with my memory. Can you remind me…”

Years before she was diagnosed, she was aware of memory changes, which she attributed (and may well have been at that time) due to normal aging. Still, words she shared with friends and family in a book of collected poems, seem prescient now.

It was later, in the last couple years of her life, that Mom treated her cognitive changes more secretly and I do not know whether this was fear of judgement or a symptom of her disease or something else.

I have been quite open about my mom’s Alzheimer’s on this blog. I believe she would agree that one way to relieve the stigma for others is to be willing to talk about it. Also, my mom and I shared a belief in storytelling as a way of finding strength. We may not be able to control outcome of all of the events in our lives, but in telling the story, we can choose our perspective, and this can be empowering and freeing.

Ron and Jane during my mom’s last visit to Idaho. August 2018.

The other disease my mom had was cancer of the vulva. You can say breast cancer these days or ovarian cancer or prostate cancer because of all of the people who have talked about these cancers in the past. But cancer of the vulva is still a bit much. It tends to stop any further conversation. Genitalia are not typically mentioned in conversation in our culture and when they are it is often as objects of desire or shame. Just mentioning my mom’s cancer feels utterly personal.

I often felt angry that my mom had to have this particular combination of illnesses. My mom was all about making meaning out of life and Alzheimer’s had robbed her of the ability to shape her own story. Then this second disease gave her intense, chronic pain in an area that is already sensitive. Because of the Alzheimer’s, she often did not know why she was hurting. Due to the shame that so often accompanies vaginal pain for women in our culture, I worried my mom would be afraid to acknowledge when she was hurting, or worse, feel somehow responsible for it.

I no doubt was projecting some of my own imagined responses onto my mom’s story. And in fact, my closeness with my mom during the last months of her life gave me a window into the ways my assumptions were wrong. Or maybe not wrong exactly, but one-dimensional like a flat character in a bad novel. I’m not saying there is anything good about Alzheimer’s or vulvar cancer, only that life with it can still contain good—and in fact contain a multitude of experiences. That is not something my fear presupposed.

My mom’s life was changed drastically by these diseases, and in ways that included pain, exhaustion, and at times, trauma. But her life also included curiosity and joy and contentment. During her five months on hospice care, there were many moments where she enjoyed eating pineapple or teasing my dad or telling us stories about my grandparents that I’d never heard before. She would grin upon spotting an egret or catching the eye of a toddler. She sit on the lanai and joke that it was so nice of the sky and the ocean to turn her favorite shade of blue.

And even later, when my mom’s memory and verbal skills had faded, she continued to shape her own story in ways that were both subtle and fierce. Watching that unfold was one of the most profound, reassuring experiences of my life. While my writing skills are not up to communicating the experience fully, a poem I wrote on CaringBridge the day before her death, reflects some of her strength.

Given the choice, I would not pick Alzheimer’s or cancer of the vulva for a way to go. But it is interesting to me that I have come out of that experience feeling less afraid of death and disease, not more. This is even true of Alzheimer’s which has long been a fear of mine.

I don’t know how to get past the stigma of vulvar cancer or any disease other than by first being willing to name it. For me the aim is not desensitization but rather the beginning of integration. By welcoming the unsayable into the lexicon of what it means to be human, I can begin to open. I see the disease has boundaries; I see the person again. Openness makes it possible for me to overcome fear and be in relationship with my community, with reality, with possibility. With Jane Stavoe in whatever way she shows up that day. Ultimately, it is a very satisfying way to live.

Whale watching on March 16, 2019. (Cheering neighbors and voice of Jane Stavoe).

More Resources

On the topic of saying more, recently I was introduced to a podcast Death, Sex, and Money, hosted by Anna Sale. The show has aired since 2014 and is quite popular, so many of you may already know about it. I’m not sure how I missed it for this long!

It is billed as a show “about things we think about a lot, and need to talk about more.” Even in episodes with a different theme, death tends to make its way into the conversation. Which is how I think it actually should work in a more perfect world: that discussion of dying weaves its way into many conversations because it is such a common and profound human experience, rather than being relegated to Death Cafés or blogs that focus on focused on end-of-life.

One recent episodes that may be of interest is A Widow’s Guide to Grieving. As I listened, I was reminded of how many different ways there are to experience grief, and how refreshing to hear a variety of perspectives. I’m including the link to this particular page because it also includes a playlist on the topic of grief, which is one of the themes I get the most response from on this blog.

Thank you for reading! If you would like to subscribe, please leave your name and email below.

August 21, 2020August 21, 2020

Bridges

Tending to Endings (thirty-three)

I am in the midst of a hiatus from social media accounts, and I have been thinking about forms of technology. The ways we use them to both connect and to distance ourselves. Technology has been the hero during quarantine times in so many ways. Telehealth counseling sessions and FaceTime from hospital rooms and yoga classes on Instagram. Like many, I have been bemoaning the ways technologies are imperfect, while also being incredibly grateful that I can have Zoom coffee with my dad on a Tuesday morning.

My break from social media is not because I don’t see benefits. And I am reminded of how, when my mom was on hospice care, we eventually decided to communicate with friends and family over an online social media platform designed for keeping people informed about a medical journey.

There are of course other ways to accomplish this communication–email lists, phone trees, private Facebook groups, posting to your own website. We chose CaringBridge because I had seen it work well for friends. CaringBridge is a nonprofit organization that offers the service for free. It does not place ads on user pages or share or sell user information. (It does solicit donations). The information posted can also be kept more private than some social media sites, depending on the settings selected.

I could share photos like these on CaringBridge and friends knew that even though my mom was at the end of her life and there was much to grieve, it wasn’t all bad.

By the time we began posting updates, my mom had been on hospice care for three months. When I wonder now at how long we waited to inform people more broadly that my mom was dying, I think it had to do with our own jagged journey towards acceptance.

Also, I wrestled with the ethics of sharing my mom’s experience when, because of the Alzheimer’s, she did not have the capacity to make that decision herself. Sometimes Mom understood she had cancer and other times she forgot. She often knew her mind was not right, but she usually wanted to hide that fact. Most of the time, she did not understand she was dying, and if I brought it up, she would look at me like I was the one not right in my mind. Like many important decisions, my mom no longer had the context or the capacity to give approval.

It might seem right then, to err on the side of privacy. But there is a cost for that, too. My parents were married fifty-six years and lived in the same township for the entirety of that time. My mom wasn’t only a joiner in the community, she was a leader. As soon as she learned something new, she wanted to create a group in her living room to talk about it.

My parents had bridge club friends and church friends and antiracism group friends and teacher friends and former students who grew up to become friends. She had friends she met at peace marches and parenting groups and while walking to the train station. When my parents began spending half the year in Maui, they nurtured a community there too.

These people weren’t mere acquaintances. They were people my mom loved. Many did not know she was at the end of her life. That suddenly felt very wrong. Yet, it would’ve taken hundreds of phone calls to catch everyone up.

I asked my dad and my sisters whether they were ok with me keeping a journal on CaringBridge, not for medical updates, so much as for bringing friends and family closer to all of us during the last days of her life. They were supportive of the idea, and I am forever grateful they continue to give their blessing when I write about our family. It has helped me process a very profound time.

We did talk about what my mom would want if she was able to make that decision. We knew Mom would not have wanted people to feel bad or worry about her. My mom liked that she was a very strong person and she wanted others to know that she understood how fortunate she was. On the other hand, she would’ve wanted others to take comfort in knowing that she was surrounded by love. She would’ve wanted her family to feel the support of our community. She would have been just fine with all the times I reminded friends of her commitment to peace and to making the world a better place through acts of love.

We decided to move forward and I’m so glad we did. We were able to work as a family to decide the level of openness and landed on being fairly general about the medical journey and more specific about the emotional one. We felt it was important to name some of the heartbreaks as well as the love for the sake of honesty and because others in our circle of friends were trying to cope with illnesses, too. Particularly those that carry stigma like Alzheimer’s, can be isolating when everyone is silent.

I never have had qualms about that decision since. The clearest confirmation of came afterwards, when my dad flew home to Chicago wheeling the walker my mom no longer needed through airports, carrying the box of ashes up to the agents at each security checkpoint. Because on the other side of that lonely journey, he had hundreds of friends to welcome him home.

No doubt people would’ve showed up for my dad even without CaringBridge, but the fact that friends and family carried some of the story and understood some of what he had just endured, mattered. And I think it helped others, too. The most common thing people said to me at my mom’s Celebration of Life is how much they appreciated being kept in the loop through our online journal. And in the months to follow, my dad had more dinner invitations than he possibly could attend each week. I believe that made my mom very happy.

Below are few excerpts from our CaringBridge journal, which makes for a very long post this week! But I wanted to include examples. And, next Friday, August 28, is the 81st anniversary of Jane Stavoe’s birth. As my dad reminded me, it seems an appropriate time to honor some of her last days here on earth.

Welcome to our CaringBridge webpage. We know many friends and family of Jane Stavoe are thinking of her and our whole family as Mom enters this last stage of life. Thank you so much. We feel your love and support. Jane is living with both cancer and Alzheimer’s, and both have advanced considerably in these past few months. She and my dad are here in Maui, which is their second home and, according to Mom, paradise. All three of her daughters have had time here this winter, and Sandy and I are here now. Amy will be back to visit in early April. My mom is receiving excellent care at home here through Island Hospice and of course also, every day, from the love of her life, Ron Stavoe.
I will attempt to write brief updates often for those who would like to stay in touch. Mostly these will probably be about small everyday things rather than health updates, since right now our focus is being together, keeping mom as comfortable as possible, and noticing beauty and grace. The two things Mom says most often these days, is “Ron, aren’t we lucky?” And, “We are soooooo blessed.” It is remarkable considering all she is facing each day. But it is because she has practiced gratitude, and because she has people like you in her life that, that is what she has to say.

Evening of March 27

Journal Entry by Laura Stavoe

Mom spent the day out on the lanai, first listening to a book with Sandy, then soft music. She slept most of the day and did not want much food or water. It is becoming more difficult for her to speak.
Still, she smiles often. She grins at our jokes. She always says “I love you” back (if she’s awake). She said at least twice today, “we are sooo lucky.”
There have been times over the last week or so that mom has become agitated and anxious, both because of the Alzheimer’s and because she is facing a very hard transition. But talking softly to her and reassuring her of the love that surrounds her, relaxes her. Love really is powerful. We remind her often of the many people who are sending love her way.

Last month on an anxious day of my own, I wrote a short little meditation. I read it to my mom the other afternoon and I felt her breathing and her whole body relax and she smiled. It may be that she has always been my biggest cheerleader for my writing. Or it may have been the words helped. In any case, thought I’d share it here.

Today I breathe. I won’t always breathe. Today my lungs fill, my limbs move, my eyes see. I do not know what is next, but it is not this. And this is a gift worth showing up for. Today I get to be here with you, with us.

My Dad posted occasionally as a co-author. (He is more fluent in emoji than anyone else in our family):

Amy’s Arrival

Journal Entry by Laura Stavoe — April 2, 2019

Journal Entry by Ron Stavoe — April 3, 2019

Gifts

Journal Entry by Laura Stavoe — April 6, 2019

From the lanai where I sit this morning, I can see on my left, through the glass sliding door, the rise and fall of my mom’s chest, and to my right, the waves rolling onto shore, one after another. I feel that when mom’s breath ceases, these waves will still be breathing for her.
People have said such nice things about my sisters and I being here. And I have to admit I never in my life have thought of myself as nurse material. I used to joke with my kids that they could be sick up to two days in a row and after that, I was done.
But oh, what a gift. If you have this opportunity, take it. Yes, it’s almost unbearable at times, the heartache that comes with watching someone you love lose memory and mobility and words. And the pain when there is no way to alleviate it. That does feel almost too much.
But it also means staying connected. It means learning about our own strength and capacity for love, both giving and receiving. And even about our own weaknesses. It means being granted so many moments and a thousand gifts that I don’t yet have words for.

April 9, 2019

Journal Entry by Laura Stavoe

Mahalo and Celebrating Jane

Journal Entry by Laura Stavoe — April 10, 2019

I have much I want to say to this beautiful community of friends who have helped us to walk through this time and I know I will not be able to say it all in the manner that you deserve. I want to first thank you for responding with such tenderness and kindness to these posts. We know that my mom valued community and honesty and connection, and you have helped make one of the most difficult times in our lives, a time and a place to honor her as well as helping us to feel a sense of community and love.
Yesterday Dad and Amy and I walked to the Hula Grill and ate crab wantons (mom’s favorite appetizer) and listened to a local play James Taylor and John Denver songs. We saw rainbows in every direction. Those of you from Maui know that rainbows are not rare on what is sometimes referred to as Rainbow Beach. Still, there seemed to be even more than usual, and in deeper colors, bows that stretched across the whole sky.
All of this to say, we are ok. And we are taking care of ourselves and each other. And we are thinking of mom with every step and every breath and that feels mostly good, though sometimes we also ache from loss and those losses we know are yet to come. We will be in touch shortly with more information about Jane’s Celebration of Life which will be held on April 22, Earth Day, at the Metropolis Ballroom in Arlington Heights, Illinois.

Thank you so much for reading Tending to Endings. One downside of my social media break is that I am not posting Tending to Endings on my Twitter Feed or Facebook site, which is one way new subscribers would find me. If you are on social media and feel a particular post was helpful and may be of interest to your friends, please feel free to share it on your page or to send a link to those who might appreciate it.

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Next week I will be sharing lessons I’ve learned from hospice workers and others who have dedicated their professional lives to end-of-life care.

August 14, 2020August 14, 2020

We’re Here

Tending to Endings (thirty-two)

Are you taking care of yourself?

This is a question friends, acquaintances and even strangers would ask me after learning I was a caregiver for my mom. Everyone was aware of statistics about how stressful caregiving is on the health of the caregiver. This is especially true of spouses of Alzheimer’s patients for which the trajectory of decline is often long with care needs increasing with time. For years, I had been asking my dad the same question.

When I left my job to live with my parents to help with my mom’s care after her cancer returned, I no longer knew how to answer the question honestly and succinctly. Do you mean have I eaten or showered in the last few days? Well, yes, probably. Do you mean am I physically, mentally, emotionally, and spiritually in balance? Of course not, and it would take too much energy to explain why that is not possible. During those days, a trip to the grocery store was self-care. It offered a change of scenery and time for a short phone call to a friend outside of the walls of the condo.

I have numerous friends who are primary caregivers for a spouse or parent, and I have been worried about them during these COVID times. They are caring for people who are already in fragile health and so they are more isolated than usual. They don’t have anyone coming in to give them a break. They are not able to go to yoga or play tennis; they can’t have company over for visits. Groceries have to be delivered! There is no break.

Ana and Patty were always only a phone call away when I was caring for my mom.

Early in March, my friend Debbie received word from her dad that her stepmom had cancer that would require six weeks of radiation therapy in Colorado. By the time Debbie arrived to help, Colorado was already on lockdown. The medical situation was dire and my interactions with Debbie were only through occasional texts. She sent pictures showing the snowstorm that almost kept them from radiation therapy.

I was worried about my friend and longed to talk with her, but she had little time for phone and her step mom could not be left alone. COVID protocols meant others couldn’t be called in to help.

Debbie texted me,

As soon as I get a chance, I’m going to cry. But it will have to be after a split feeding, a doctor appointment and the last feeding after which I need to keep my stepmom upright for thirty minutes while she is miserable because all wants to do is go to bed.

Oh how I understood that place. I sent my friend hearts and let her know I loved her.

Debbie has been home since mid-May and her stepmom is recovering well. The crisis has passed. When I asked Debbie about caregiving during COVID, she answered by comparing it to another time she was a primary caregiver at the end of her Mom’s life.

I’m not sure this will be helpful but what I felt this time was that the whole world had similar feelings as I was having, albeit for different reasons. This time, I didn’t feel so alone. When taking care of my mom, I felt isolated because others lived as though nothing had changed. For me, everything had changed.

It reminds me that I never know the particulars of a caregiving experience except for my own. I have a tendency to fill in the details with the worst possible scenarios. Debbie’s experience was full of difficulties and graces, too, much like my time with my mom.

Friends from work made a poem book for me to carry with me when I went to care for my mom. I treasure it still.

I’m not a fan of articles that tell you what to say in difficult situations as though we can short-cut our way to empathy. Whether Are you taking care of yourself comes across as a loving question or a pat cliché has to do with context and tone and whether I’ve had enough sleep.

But what is true for me is that I would rather my friends ask pat questions than back away out of worry about saying the wrong thing. Whether they say the right or wrong thing is not going to change the gravity of the situation. But their presence in my life, even from the sidelines, can make all the difference in how supported I feel.

At times I have been that friend who has backed away. I told myself I was giving my friend privacy (without asking if that was what she wanted). Usually that distance was born of fear. As a result, I have missed opportunities to learn, to grow, to be a friend.

Sometimes being a friend to someone in dire circumstances is difficult not because there is so much to do, but because there is not much that can be done. I couldn’t give Debbie what I thought she needed most, which was a break and some rest. I often felt like I was bugging her when I would ask things like have you been able to go for a walk? And I felt like the words I had to offer were far too small to match her situation.

It doesn’t always feel helpful to stay in touch with someone during critical times. But looking back at Debbie’s and my long thread of texts which sometimes were despairing and sometimes philosophical and sometimes funny—texts that sometimes involved her telling me, no, she really could not fit in a walk that day—I am very grateful we stayed in touch.

There are definite advantages to having young mom friends who can send photos like this one of Josie! Photo Credit: Jenna Petrykowski.

During the last months of my mom’s life, when my father and I were living in the caregiving bubble that sometimes felt like chaos and other times like a cocoon, I had no energy for friendships. And yet, I needed my friends more than ever.

And now thinking back to that time, I see my friends as being central to how I got through. They sent cards and texts and voice mails. They responded to the sunset photo I sent them with hearts. They answered when I called on my walk and let me spill my sadness and exhaustion into the short time we had to talk together. They sent me poems and really good pears; they took online Scrabble turns late into the night; they sent photos of their babies they knew would make me smile.

What I needed from my friends during that time was not privacy so much as grace. I had very little to give. Still, my friends stayed. They were thousands of miles away, and yet I remember them as being with me in that cocoon of a condo during that sacred time. It made all the difference that they kept reaching out, each saying, one way or another, we are here.

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July 31, 2020July 31, 2020

Being Here

Tending to Endings (thirty)

Last Thursday John and I slipped inflatable kayaks off the bank into Marsh Creek and the rain came pelting down. We were paddling a couple miles of water to the camp we had saved for our family gathering. Our kids would arrive the next day and we were floating this section hoping it would be tame enough for the grand girls to paddle over the weekend, and also, a bit of adventure for ourselves.

Marsh Creek which borders the Frank Church River of No Return Wilderness has long been a magical place for me. The first summer we were together, John and I paddled this stream during higher water, stuffing tents and food and sleeping bags into our hardshell boats. We slept at Big Hole camp where creeks converge to become the headwaters of the Middle Fork of the Salmon River. It felt right to return to this water nineteen years later during a year filled with so much tumult and change.

The current of river beneath my boat has a way of bringing me to the place my body is. The water this late in summer is sometimes only ankle deep. I needed to pay attention to avoid perching the boat onto rounded stones or careening into the marshy grass. About a mile into our float thunder rolled through the mountains and echoed throughout the valley. The sky darkened; the air cooled; rain fell hard, turning the surface of the water into a percussion instrument. I let my boat spin in the current, the rain fall on my face. I could breathe.

We were about a mile into our float when the rain made a new, more rapid sound. White pellets gathered in the current. John and I yelped and then broke into laughter as we paddled through the hailstorm, our skin stinging, our bodies leaning towards the deepest channel, eyes squinting towards shore, looking for camp.

I was not laughing when we left town early that morning. I was weary and unsure whether we should even hold our family campout. One of John’s daughter’s and her husband decided to stay home due to Covid concerns and we didn’t blame them. We would be outside, but still, there were fourteen of us (now twelve). Boise’s cases were surging and hospitals, filling.

Also, George, a close friend of ours and a mentor to John was in the hospital having suffered a serious heart attack only days before. He had been without oxygen for ten minutes before his wife, Melinda, found him and gave CPR. He made it to the hospital where the doctors induced a coma. Given the amount of time he was without air, doctors did not offer much hope for recovery.

It did not seem right for us to be out of cell range during such dire times.

Like so many decisions, lately, this one felt confusing and ethically fraught. Whether to camp, whether to march, whether to go for a walk with a friend, whether to support schools opening or staying closed.

I didn’t even know what to write for my column, not because I was out of ideas but because a foundational premise for Tending to Endings is that sometimes the difference between a tragic end of life and a difficult but beautiful one is in the intimacy that comes from paying attention to one another. It comes from community.

But, how do you show up for each other when hospitals must institute no visitor rules in to keep Covid from spreading and family who are primary caregivers must isolate to protect the fragile health of those they care for? My blog was one more place I felt ungrounded and confused.

There is a tendency I have to want to skim the surface of life during chaotic times. As though I can skip over the hard part without feeling it, like a stone skittering across the surface of a lake. I can tell when I am living this way when I have the sense of my life being on hold until things change, presumably for the better. It feels like half living.

We did not cancel the campout. We let Melinda and other friends know that we would be in the mountains for a few days, but we would be back and ready to help in whatever way possible on Sunday. We dropped a note and a jar of apricot jam on their doorstep. We continued to pray. All of it seemed so flimsy in the face of so much.

That night, the rain paused while John grilled steaks over an open fire and we set up our tent on the bank. The moment we pulled our sleeping gear into the tent, the clouds let loose again with a ceaseless rain.

Throughout the night, John and I woke again and again to the world brightening in a flash of light, our hearts thumping in the pause, thunder cracking and rolling through the land. The rain drummed on bark and leaves and ground and our dome of tent. Beneath it all was creek song. We slept cradled in earth and each others arms. It was a spectacular storm that that lasted until morning.

The crew at the trailhead. Caroline and Gabe ran up the mountain from the other side.

By the time the kids arrived that afternoon, the sun burned off the fog and the air felt clean. Still, true adventures rarely run smoothly. Saturday we planned a two mile, family friendly hike up to an alpine lake. Only after we passed the three mile mark and the trail continued to rise over another ridge, we pulled out the GPS and learned we had .8 miles more to go up to 8400 feet. We had underestimated the climb by half.

We hadn’t brought lunch. Knees ached. Stomachs growled. Everyone was tired and cranky. John and I split a measly Lara bar that bragged on the wrapper about how little it contained. The grand girls ate their Pringles before they made it to the top.

Just about the time I was ready to nap by the side of the trail, I heard the loud whoops ahead and Tesla came rushing back down towards us, her eyes sparkling.

“Worth it?” I asked.

“So worth it!” she waved us up the last few steps. “The lake is huge!”

Before long, John and Dylan were catching cutthroat one after another, and Jay was cleaning fish and starting a fire. We scooped tender white fish off the warm rocks with our fingers. We filtered water from the lake and refilled our bottles. We swam in the cool water and lazed on shore. We reveled in abundance, in serenity, in togetherness.

Brains are excellent for some kinds of knowing: science and data and insights based on prior experience. But for me to feel whole, or even, if I’m honest, to get through a day well, I also need intuition. Maybe you call it spiritual guidance or energy or flow. For this kind of knowing, as my friend Louise says, I need to be where my feet are.

I don’t always have to get to wilderness to drop back into my body, but it helps. I know which way to lean by paying attention to where I am, not only with my head, but with all of me.

It was a beautiful four days. Once we were in the wilds, I never questioned our decision to camp. Not because I knew we were completely safe, but because I felt connected again to the whole of things. Intuition and spiritual reliance do not promise error-free living. Only that it will be life; and nothing will be wasted.

When we arrived home tired and happy, John pulled up his email. There was a message from George who was very much alive, and able to write at length about his adventure. The subject line read: Your prayers helped/I got out of the hospital last night! George was home. We could hardly believe it.

He began by writing, “I don’t want ANYONE to feel they did not have a part in my continuing to live.” He listed the doctors, the friends who showed up, the ones who left voice messages, the 911 operator who guided Melinda through CPR and reassured her she was doing fine. He was brimming in that very thing I was so sure was missing during this Covid time–that feeling of community, of being loved.

Nothing was fixed in the world after our trip. Well, maybe George. But he, too, will have a long recovery. We will be here to help in ways that will feel flimsy and far too small.

Maybe that is the biggest illusion when I get ungrounded. That the small things don’t matter and aren’t worth doing in the face of impending tragedy or global crises or systemic injustice. In the face of perpetual uncertainty.

How many times have I learned they are exactly what matters? A day, a heartbeat, a step. I just don’t get to control when or how or in what way they matter. A spectacular storm in the mountains reminds me: of course I do not carry this world on my shoulders. And it would be silly to think that was the point. I keep showing up with my kind note, my little story, my jar of jam. It’s how we weave a cradle for one another. How we know, we are all here.

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July 10, 2020July 16, 2020

Heart Art

Tending to Endings (twenty-eight)

When the towers in New York were hit by airplanes, I was the mother of twin six-year-olds and an English teacher to classrooms full of middle and high school students at a community school in Idaho. In the days that followed the tragedy, I set aside the planned for curriculum and instead, my students and I wrote poems. We eventually turned it into literary journal that included contributions from each student and faculty in the school. The theme of the first annual RiverRock Review was hope.

I’ve been thinking lately about the the relationship between creativity and upheaval. When my foundation is shaken and nothing makes sense, creativity suddenly feels meaningful, worthy, even comforting. I always know art is important, but there is something about crises or loss or major life transitions that makes creative pursuits one of the few endeavors worthy of the conditions. Art doesn’t have to make sense.

During the years I taught creative writing through a nonprofit arts center in Boise, I often worked with students whose lives were in transition. Some of the most powerful writing came from students at the school for pregnant and parenting teens, the cancer unit at the hospital, the juvenile detention center. Having lost many of the things that had defined their former life, these writers were seeing things anew. It was a gift to bear witness to their journey.

Sometimes I think all of the cooking is going on these days is part of that same impulse to create during a time of collective grief. As Grace Paley demonstrates in The Poet’s Occasional Alternative, it is an art form that is more dependable in terms of satisfaction than writing a poem.

The painted rocks and crocheted hearts and sidewalk murals feel part of this creative energy, too. As does gardening, which has been on an upswing. My father, who spent much of the first spring after my mom’s death planting flowers, tells me this year he cannot find his usual plants at the nursery because so many people are growing gardens.

We aren’t always very good in our culture about encouraging creativity. We remind each other to exercise and eat and sleep right, but we really don’t remind each other to be creative very often, though I am sure it is as important as being intellectually and physically active. I don’t mean creating art for galleries or for the masses, but rather, exercising the muscle. I mean playing around with music or words or the dirt in the garden.

Especially when the ground beneath me is shifting, creativity helps me to get from one day to the next. One of the reasons I have so many details from my mom’s experience to use in these posts is that I journaled during the time I was caregiving. I didn’t know whether I would ever share any of that material publicly, but I found comfort in putting sentences around the experience.

I realize writing isn’t comforting for everyone. I love messing around with with words, but if someone hands me a colored pencil and tells me to draw something, I usually feel anxious. I know for many people, the opposite is true. When it comes to creating during hard times, I think it helps to pick a form that feels more like play than performance.

And now when so many people are separated from those they love most, it occurs to me that art is another way we find each other.

In The American Book of Living and Dying, authors Richard Groves and Henriette Anne Klauser tell a heart wrenching story of a four-year-old with leukemia on hospice care whose mom is incarcerated. The girl loves to draw pictures, particularly of sunflowers and she even paints one on her bald head, which becomes her signature. The mother, Angie, is encouraged to engage in art therapy from the prison, and the two begin to share drawings as a way of healing relationship wounds and connecting. Years later, Angie eventually teaches art therapy in a senior center using her daughters pictures and experience as a model.

Though my mom died the spring before Covid-19 isolations, she was separated by an ocean and a cognitive disease from many loved ones. The memory book we put together brought many of her friends to her during her final days. And people added their own projects. My aunt quilted a blanket using soft textures and my mom’s favorite shades of blue. My dad brought moms favorite Hawaiian flower arrangements to her bedside. My sisters made playlists from old favorites like the Carpenters “Close to You,” and Cat Steven’s “Peace Train.”

Hearing about how much my mom responded to music, my son Dylan sang a beautiful version of Iron and Wine’s “Trapeze Swinger” and sent the file to our phones so we could play it for my mom in her last days.

My mom received these creative offerings. Even after she could no longer talk, they would make her smile. They were a form of connecting when very little else held meaning.

Dad’s garden. Dylans music. Carol’s blankets. Creativity moves things. It feels good when it is hard to feel good about anything. It honors moments when everyday tasks, like turning to page 373 of the textbook after your country has sustained a tragedy, feel wrong. Instead, you write a poem about hope. You build a castle in the sandbox with your toddler. Plant a garden, make a quilt, curate a slide show. You sing a song.

Other Resources

Alive Inside, is a powerful and inspiring documentary about the power of music on those living with dementia.

The Artist’s Way: A Spiritual Path to Higher Creativity, by Julia Cameron is a book that offers a path for reconnecting with creativity and shedding some of the obstacles that get in the way of creative expression.

Poetic Medicine: The Healing Art of Poem Making, by John Fox is a book about writing poetry as a way of healing. It offers information and exercises.

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