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Tending to Endings (twelve)

It may sound strange to be comforted by a book about death during a pandemic, but I have been reading Frank Ostaseski’s The Five Invitations: Discovering What Death Can Teach us about Living Fully. I have returned to it morning and night during this last week when so many of us find our lives changing, and it has given me direction and comfort and hope.

The principles will not be new to anyone who has practiced Buddhism or a Twelve-Step program of recovery or studied Brene Brown’s research on vulnerability and whole-hearted living or who knows the tenets of acceptance, humility, and love from a wide variety of traditions.

What Ostaseski does is give generous personal context to the practices, using story to show how they hold even in dire conditions. He takes the hard stuff head-on and gives such relevant, poignant examples that I end up trusting his perspective and being reassured.

Ostaseski began his work with hospice patients in the 1980s during the AIDS epidemic. He founded the Zen Hospice Center in California, where he worked for thirty years. More recently, began the Metta Institute which provides education on spirituality in dying. Over many years, he sat with thousands of people as they approached death.

He writes, “I am not romantic about dying. It is hard work. Maybe the hardest work we will ever do in this life. It doesn’t always turn out well. It can be sad, cruel, messy, beautiful, and mysterious. Most of all it is normal. We all go through it.”

Death is normal.

This week I intended to write about hospice, but like so many things, visits have been halted where I have been training to volunteer.

The stories of loss that have been getting to me most lately have been the ones about care facilities on lock-down and the many people who cannot be near their spouses or family or friends. It has been reading about people in Italy who died in isolation and whose families cannot yet come together to honor and grieve them.

My impulse to write this blog and to pay attention to endings myself has in part come from my sense that it is important to be present for people during their final months and days on earth. To bear witness and to share those times. To usher people out of this world lovingly the way we usher them in upon birth.

But even births hardly ever go as planned. Dying, too, involves a great deal we cannot control. Ostaseski’s book offers a window into how to proceed with an open heart anyway.

I have underlined a great deal throughout the whole book, but it is the second invitation, Welcome Everything, Push Nothing Away, that feels most relevant to me this week. Ostaseski explains, “I cannot be free if I am rejecting any part of my experience.”

His personal stories are of his brother’s alcoholism and death, his own triple heart bypass surgery, being sexually abuse as a young teen. So, he really does mean everything. Or, more specifically, everything that already is.

Welcoming what is, as it is, we move toward reality. We may not like or agree with all that we encounter. However, when we argue with reality, we lose every time. We wast our energy and exhaust ourselves with the insistence that life be otherwise…Acceptance is not resignation. It is an opening to possibility. And openness is the basis for a skillful response to life.

In 2001, when anthrax was showing up in the mail and in the headlines, which happened about a month after the World Trade Center bombings, which happened soon after my divorce while I was still grieving and helping my young sons grieve, I had a teaching job that involved traveling to Southern Utah for a backpacking trip with a group of seventh graders. My own kids, kindergarteners at the time, were at home with their dad and I would be out of contact with them for five days. As we drove away from Boise in the vans, I felt vulnerable and uncertain and like the world might really be coming to an end. 

At the trailhead, the teachers—four of us—cinched packs on awkward, seventh-grade shoulders, and the heaviest over our own. We walked into the desert among juniper and yucca, over red earth and beneath the clear blue sky.

The first night we slept on the rim of Dark Canyon, where we told stories from our sleeping bags and watched bright Orionids slip across the night sky. The next day, we found springs to refill our water bottles. We were in wilderness, so we took care to watch out for ourselves and each other and the organisms in cryptobiotic soil.

A couple of days into our trip while exploring Mule Canyon, we came upon the dwellings of ancient Puebloans, curved stone shelters shaped by people living more than a thousand years ago. It was impossible not to consider that these people, too, lived and drank from the spring and climbed the towers and slept beneath Pleiades. That the clay and the canyon and the sky had outlasted them, and would outlast us too. 

I don’t know why humility reassures me during difficult times, but it does. What I felt in that moment was not that I was insignificant, but that I was connected, part of something vast and beautiful and whole.

When it came time to leave the canyon and we drove to the first small town where there was a gas station and convenience store, we saw the headline on the New York Times, “Twenty-one Senate Employees Test Positive for Anthrax.” It was jarring, but it was not everything anymore. Like the florescent light of the store, it outshone the sun due to proximity, not power.

Like most of us right now, I am unsure of many things. And maybe that is why it helpful to read something that reminds me good can come from not knowing. Ostaseski writes, “The energizing quality of mature hope helps us to remain open to the possibility that while life may not turn out the way we first thought, opportunities we never imagined may also arise.”

All five sections of the book have been compelling, useful: Don’t Wait; Welcome Everything Push Nothing Away; Bring Your Whole Self to the Experience; Find a Place of Rest in the Middle of Things; Cultivate Don’t Know Mind. They have been an antidote to fear and a reminder that humility is not weakness. It is a way towards openness and possibility.

With love,

Laura

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Books by Mortals

Tending to Endings (three)
Snowy Bitter Brush

Hospice workers often say, “Every death is different.” I would add, every decline, too. One reason I didn’t find much literature directly applicable during the time I was caregiver for my mom is that Alzheimer’s affects people in such individualized ways and it keeps changing. My mom was either in a much earlier or a much later stage than whatever I was reading about at the time.  

Also, I was grappling with the hugeness of what I was going through at the same time I was trying to figure out how to help my mom remember how to sit down in a chair. Books either left the existential crises out or approached it in a way that felt clinical. OK, I may have had unreasonable expectations on what the average book could offer.

But two helped me a great deal, and I have been recommending them ever since.

I first read Atul Gawande’s Being Mortal: Medicine and What Matters in the End in 2016. Gawande, a surgeon, gives historical and cultural context regarding end-of-life treatment, and he draws on research and case studies and personal memoir–all compelling–to arrive at a series of conclusions:

…our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.

Two years later later when it felt like mom’s options were closing in, Gawande’s words helped me envision a broader landscape from which to make choices. For instance, when I explain to friends why my mom’s dying was beautiful and good as well as devastating, I include that we were able to get her Maui, my parents’ second home and her favorite place in the world.

It may seem an obvious decision. Mom, age 79, had two terminal diseases: inoperable cancer and advanced Alzheimer’s. My parents hadn’t spent a winter in Chicago in fifteen years. Why would we hesitate?

And yet, one constant of being a caregiver was that I was hardly ever sure I was doing the right thing.

Was it more important for my parents to be close to a deeper family support system or to get to their island home? Should we stay near Chicago where there were more medical specialists? Was the nine-hour flight too much for my mom to bear? Also, Alzheimer’s made it difficult to know what my mom truly wanted.

What Gawande’s book gave me was not a prescribed course, but rather, a broader framework. It offered language beyond treatment options: What is important? What is meaningful? What are we afraid of? What would make this a good day?

Those simple questions helped me make peace with a thousand imperfect decisions. A few —like getting mom to Hawaii and onto home hospice care—significantly transformed her experience. Mom spent her last four months at home on the lanai watching whales rather than in doctors’ waiting rooms.

I read the second book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying in the weeks after my mom’s death. Sallie Tisdale, a palliative care nurse, covers the particulars of dying from the point of view of someone who has been beside many deathbeds. Her tone is warm and open and direct. Somehow found it very comforting to have versions of what I had just been through recounted. It made me feel less alone.

Tisdale does not suggest that having extensive experience with death means that we understand it. One things that helps me trust both of these writers is each approaches the topic of death with a sense of humility. “I have never died,” Tisdale writes, “so this entire book is a fool’s advice.”

Tisdale’s writing is elegant and honest and often funny. I found her section on grief especially relatable.

 No one tells you that grief is like a long march in bad weather. You’re forgetful and find it hard to make decisions and have no interest in the decisions you are being asked to make. You lose track of time, because time changes too, shifting and slowing, speeding and stopping altogether. An hour becomes an elastic, outrageously delicate thing disappearing or stretching beyond comprehension. One is deranged, in the truest sense of the word: everything arranged has come apart.

Ultimately this book helped me consider my own future and that I really do not want my death to usher in complications and decisions and paperwork for those who love me.  Tisdale includes an enlightening chapter about the body after death and also useful templates for death plans advanced directives. 

Early her book Tisdale writes, “We share a grand social agreement about mortality. We choose not to notice, if we can.”  I read both of these books during a time when mortality and all of its messiness was already in my face. I have not always been so ready to read about the end-of-life, and I am well aware that these topics can be anxiety producing.  

But I will say that while the books are very straightforward and direct about death— no euphemisms, no glossing over the hard stuff—one reason I am so quick to recommend them is that ultimately, I also found them empowering and hopeful. As honest as these authors are, each also treats the topic of death with gentleness and love. They write about mortality with a great deal of professional knowledge, but also from the perspective of, well, being mortal.   

Next week I plan to explore the idea of memory books.

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