therestlessnest

where life's not empty, it's restless.

Archive for the tag “end-of-life”

Being Mortal in the Time of Trump

UnknownWhat matters most? That question has been like a three-word anthem for me this month, as I re-read Atul Gawande’s Being Mortal: Medicine and What Matters in the End. The small Seattle church I attend is having a summer book club, of sorts, which consists of reading Being Mortal and getting together in small groups to talk about it over dinner.

The group I was in kept coming back to that question: what matters most? In Being Mortal, Gawande talks about a patient who decided that for him, life would continue to be worth living as long as he could enjoy chocolate ice cream and watching football on TV. Another patient, who knew her time was limited, wanted to be able to continue to give piano lessons as long as she could. But what really matters most—behind the scenes of those two and pretty much all of Gawande’s examples—is being with the people you love. Being able to love and be loved. That’s what matters most.

The other day, I was feeling a sort of low-grade emotional fever, triggered by Not Accomplishing Enough Work-Wise while wishing I could Just Go Swimming. My malaise was compounded by that other virus I can’t seem to kick: Creeping Despair.

IMG_0198.JPG          I decided to wallow. Just for a few minutes. So I opened Facebook. And there was the most delightful post from an old friend, describing how much fun she’d had hiking in Mt. Rainier National Park with her adult son. There were photos and captions loaded with mutual affection.

That’s what matters most, I thought. Love. The thoughtfulness of an avid hiker taking his mom, who probably doesn’t quite match his usual pace, up to Mt. Rainier, because he wants to share his favorite trails with her.

What is jarring, in this time of Trump, is to be reading a book that invites readers to reflect on the value of life, and the desire to live as fully as you can, with as much love as you can, until as close to the end as you can, while all the while the daily news is saturated with the casual and cruel devaluation of life. And the opposite of love: however you wish to characterize that. Is it hate? Yes. Too often. Is it also fear? Yes. All the time.

What we are learning, over and over, is that what matters most to some Americans is the right to buy and bear arms, including automatic weapons, with all that the word automatic applies. And in the darkest cases, the perceived “right” to use those arms. Against fellow humans. Apparently that is what matters most, to people who feel their 2nd amendment rights are more sacred than our right to take our kids shopping for school supplies without dying violently in a spray of gunfire. Or our right to go out on a Saturday night with friends and not be gunned down in cold blood. Or our right to attend high school—or elementary school—and live to attend college.

It is painful to think that while our reading groups have been contemplating what matters most at the end of life, our news headlines are braying the deathly drumbeat of rampant disregard for all of human life.

And it’s more than just gun violence. The same rampant disregard for human life is inherent in violent treatment of immigrants and in all the many forms of racism and bigotry that our president and his party personally encourage on a daily basis, egged on by the fundamentalist Christians who are more and more openly proclaiming their fealty to a white Christian nationalism that excludes pretty much everyone Jesus taught us to love.

However: there is a different kind of Christianity that is still strong in this country. I was startled to see the Washington Post point this out in a recent article about why evangelicals support Trump: startled because it’s so rare, though I hope it will become less so.

IMG-2885These other Christians are numerous, but a whole lot quieter. They are the sort of Christians who shelter immigrants in their churches, because they genuinely want to do the work that Jesus called them to do. They want to walk his walk, rather than be the noisy, attention-getting kids on the block, like the evangelicals.

Because what matters most to them is, as the prophet Micah famously put it: “to do justice, and to love kindness, and to walk humbly with their God.”

Do justice. Love kindness. Walk humbly.

Serve chocolate ice cream and football on TV to a dying man.

Hike in a mountain meadow with your mother.

Walk humbly with immigrants facing deportation.

Read Being Mortal, and talk about it.

And keep asking yourself—daily, hourly—What matters most?

9780525436058A few more end-of-summer book recommendations: Maggie O’Farrell’s I Am, I Am, I Am: Seventeen Brushes with Death, and Xu Xi’s This Fish is Fowl: Essays on Being. 41WiKzooBhLYou can read my interview with Xu Xi on the China-US Women’s Foundation website.

Seattle-area readers: Registration is now open for my Introduction to Memoir Writing class at Seattle Central College, which begins September 25. 

From Sun to Sun

51NYhLAG7FL._SX326_BO1,204,203,200_ “I am not an angel,” Nina McKissock told me firmly. “I’m just doing my job.” McKissock is a hospice nurse. She is also the author of a new memoir called From Sun to Sun: A Hospice Nurse Reflects on the Art of Dying, in which she tells the stories of composite patients based on many of the real people she has cared for at the end of their lives. (McKissock and I will be reading and talking together at Elliott Bay Bookstore in Seattle on Sunday, November 1 at 3pm.)

From Sun to Sun is one of those books I was hesitant to read, thinking surely it will be too hard and too sad to bear. But once I started reading, I couldn’t stop. Each one of McKissock’s 24 patients became my friend for an hour or two; a friend whose story had much to teach me. “There can be great healing within the dying process,” McKissock writes in the frontispiece to the book, and though this may seem counterintuitive, she goes on to show us many examples of how it can be true. One of the most moving stories was of Eric, a 51-year-old with ALS: Lou Gehrig’s disease. Eric had watched his father die of the same illness, so he knew what lay ahead. His type-A, executive wife was heartbroken and enraged. Of course. But her anger at ALS made it nearly impossible for her to slow down and muster the patience caring for her dying husband required. When McKissock persuaded her and Eric to accept the help of Rachel, a gifted full-time caregiver, both of them began to heal. Emotionally.

One night, Rachel and McKissock carried Eric outside to see the full moon. “There are moments in my life where I feel so humble that I simply want to kneel in reverence; this was one such moment,” McKissock writes. “It was sacred to witness this beautiful, broken man wrapped in blankets—who knew full well he was seeing his last full moon.”

MicKissock speaks truth when she says hospice nurses and caregivers are not angels. They are the opposite of ethereal. Much of their work is hard, physical labor: moving patients, dressing patients, changing sheets, preparing, serving and cleaning up after painstakingly offered meals. Much of it is a highly professional mix of cognition and intuition, calibrated by years of experience, as they assess a patient’s ever-changing needs for care and medication, even as they carefully juggle his or his family’s needs to be kept informed and prepared for what lies ahead. They know that as they do their job, the dying person is doing the hardest spiritual work any of us will ever do: saying good-bye. And then preparing to take that final step, the one we will all have to take alone. A good hospice nurse can be a very real guide and helper as her patient embarks on that journey.

My brother died of a brain tumor at 52. Because his brain was affected by the tumor, it was very hard for him to express his thoughts and feelings in his final days. But I’ll never forget two words he said to me, as we sat together in his hospice room: “I’m scared.” I felt helpless in that moment. I don’t remember what I said in response. But I was so grateful for the hospice nurses, who had created an atmosphere of comfort and serenity for him and for us.

At the end of the chapter about Eric, McKissock quotes the 13th century poet, Rumi: “This being human is a Guest House; treat each guest honorably.” With the help of hospice nurses, caregivers and social workers, I believe we are, at last, re-learning how to do that.

Bonus event! At 5pm on Sunday, Nov 1, I will be at Northwest Film Forum to talk about the Kickstarter campaign for our film, Zona Intangible, as part of their free Join the Crowd presentation about crowd funding. Please support our Kickstarter if you can and share the link with others!

Being Fragile

IMG_1380Human beings are fragile, though we prefer not to dwell on this. We prefer to celebrate our resilience, our strength, our endurance. But in the end, we are fragile, because we are mortal. Some living things—for example, the bristlecone pines of Nevada’s Great Basin—can live for a thousand years. Not us. Not a single one of us. Not ever. Unknown

Mortality is what Atul Gawande wrestles with in his book, Being Mortal. Gawande is a surgeon, and he is trained to fix broken humans so they can go back to being strong and resilient and busy. But when his own father was given a diagnosis that both father and son knew was incurable, Gawande realized how ill-prepared he and his parents—both also doctors—were to accept what medicine can’t do to fix things. And he realized he and his family weren’t alone in this. He began to look around his world, the world of surgery, oncology, all kinds of high-tech solutions to human fragility. He started asking hard questions about how and why doctors so often aggressively treat terminally ill patients—frequently causing great distress and discomfort—and why they so rarely ask questions about what their patients might actually want from life in their final years, days or months. He sought out people who were trying to do things differently, and learned from them how to ask the right questions. A piano teacher with, at most, weeks to live, told him what she most wanted was to leave the hospital, go home, and be given just enough pain relief to enable her to teach as long as she could. She got it, and in her last days, her students played a final recital for her in her house.

Gawande also takes a long look at what life is like in America for people who may still have years to live, but who have reached that most fragile phase of all: old age. He questions whether safety—the stated priority of most adult children, when they look for a place for their parents to live—should really be our number-one concern in housing the elderly. What about joy? Meaning? The dignity of privacy; the pleasures of community? Gawande tells the story of how one assisted-living residence was transformed when dogs, cats and 100 parakeets were brought in. He also looks at programs to help seniors stay in their homes by zeroing in on small things: finding someone nearby they can call to change a lightbulb, or take them grocery shopping.

It may sound like a tough read, and at times it is. I wish he had wrestled more with the emotional and ethical challenges posed by Alzheimer’s disease and other dementias. But Being Mortal is ultimately an uplifting book because Gawande seeks and finds examples of how we can do better at facing mortality: our own, and that of the people we love. His focus is on the medical end of the conversation, because, he contends, we have come to view old age and death as medical challenges. He wishes this was not the case, but given that it is, he wants us to think about ways to steer the conversation from what the intensive care unit or nursing home has to offer to what human beings nearing the end of life really need and want.

Gawande writes that he “never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being—would come from helping others deal with what medicine cannot do as well as what it can.”

After reading Being Mortal, I felt less fragile. Less fearful. There’s something about facing fear head-on that does that, especially when you’ve got a good guidebook. 

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Buy Her Beautiful Brain from the small or large bookstore of your choice. Find a bookstore here. Order the Kindle version here.

Registration is open for Introduction to Memoir Writing at Seattle Central College. Starts February 11, 2015. Six Wednesday nights. Non-credit = all inspiration, no stress!

 Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:45 a.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. Podcasts available too.

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