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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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About Living

Tending to Endings (Seven)

The first time I contacted hospice was a little over one year ago. Before I made the call, I called friend Betsy from the shower stall in the back bedroom of the condo where my parents lived in Hawaii. It was the furthest point away from my parents’ bedroom, and there were two sets of doors closed between us. Betsy is a nurse who has worked in palliative care, and I wanted to ask her about hospice.

I can’t give a good explanation for my fear and secrecy. Hospice was the logical next step for my mom: Her cancer was inoperable and other treatments hadn’t worked. Mom had a clear advanced directive she created long before she had Alzheimer’s symptoms. My father and sisters and I all knew from that directive and from knowing my mom for many years that she would not want us to prolong her life under these conditions. Mom was living with two terminal diseases.

But there I was huddled in a shower stall whispering to my friend in Idaho and feeling very, very guilty. Bringing in hospice felt like a betrayal. I felt, maybe not that I was causing my mom’s death, but like I was rushing it or agreeing with it or saying that it was ok with me.

This, even though I have been pro-hospice ever since I heard of it, which I believe was back in the 1970s when my mom became enamored by the teachings of Elisabeth Kubler-Ross and shared them with everyone who would listen including her children.

I believe quality of life matters. I believe in choices. I know that research shows hospice does not shorten lifespan. But when faced with my mother’s actual decline and actual pain within her actual living breathing self—the choice to make the call felt, well, wrong. Because the loss of my mother felt wrong.

“Oh Laura,” Betsy said, “Hospice will help all of you.”

“Mom can still sometimes walk to breakfast,” I told her, thinking this was evidence that my mom wasn’t sick enough for hospice.

“That’s excellent. Your hospice nurse will help her to enjoy that more. Some people receive care for years. Most people wait too long and they don’t get the full benefit of hospice which is really about quality of life.”

I remembered the slogan on the Islands Hospice brochure: It’s about Living. I think I actually rolled my eyes at that one. All we could think of these days was illness and death. It seemed a stretch.

Betsy also assured me the staff would tell me if it was too early, in which case there were likely palliative care options available.

I talked with my dad and sisters after that call, and then I made another to Islands Hospice on Maui.

What receiving hospice care meant for my mom was that for the next four months her pain was managed at a level that allowed her to walk to breakfast and play Scrabble and dance in the living room with my father. It meant she never spent another hour of her life in a doctor’s waiting room.

Ron and Jane dancing to Embraceable You

Noelle, our nurse, would visit twice a week and talk with mom out on the lanai of the condo while she checked her blood pressure. Mom quickly befriended Noelle, telling jokes and asking her about her own children.

My dad and I learned the skills necessary to help take care of my mom between Noelle’s visits, and we had a number to call if we had a question or if we needed a nurse to visit at any hour of the day or night.

I don’t want to paint a picture that suggests all of this was easy for any of us and especially for my mom. There were still many moments of uncertainty and worry. There were times when we couldn’t help my mom nearly is as much as we wanted to. There was still unimaginable loss ahead. But the move to hospice care meant less chaos and more guidance and support for our family. For my mom, it meant less pain and more human connection. More regular life.

Betsy was right. Hospice helped all of us. And yes, the pamphlet slogan was right too.

Mom visiting with Pat, her friend for over 40 years!

This week I made another call to hospice. This time to enroll in training to be a volunteer. As I’ve begun to explore end-of-life issues, it feels important to be with more people who have firsthand experience. Death and dying can seem abstract when we talk or write or think about them. But they are not abstract. Any more than labor and childbirth are abstract. I don’t want to forget how hard it is, or how full of life.

I look forward to sharing more of what I learn through hospice training and volunteer work. You can also find excellent information at the National Hospice and Care Organization including answers to frequently asked questions, research findings, and a historical timeline for hospice in the United States.

And if you have other topics related to end-of-life that you would like to suggest, please email laura@laurastavoe.com or leave comments below. (If you don’t see a comment box, click here: laurastavoe.com).

I will be traveling next week, and so I will be posting a collection resources I am excited to share on February 21. I will return with a regular column on February 28.

I truly appreciate everyone who reads Tending to Endings and all who have subscribed (72 of us now!). If you would like to receive the post each Friday, please leave your name and email below. My hope is to help create community and conversation around end-of-life matters so that we are better able to support one another.  

Have a beautiful week,

Laura

photo of Laura

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