"Be very mindful of what is appropriate for you because, I tell you, to stop in this world is to create the conditions where a lot of unusual experiences can rise up. So be very respectful of your situation and proceed with love and with care as well as courage."
It can be a stretch to summon buoyancy rather than burnout in how we work, live, and care. Roshi Joan Halifax is a Zen teacher and medical anthropologist who’s been formed by cultures from the Sahara Desert to the hallways of American prisons. She founded the Project on Being with Dying. Now she’s taking on the problem of compassion fatigue, though she doesn’t like to use that phrase. For all of us overwhelmed by bad news — and by the attention we want to pay to suffering in the world — Joan Halifax has bracing, nourishing wisdom on finding this buoyancy in our daily lives.
What shall we do about the elderly dying with dementia, losing who they are — how do we help them “die well”?
My mom is at the end stage. She is losing her abilities to speak, to eat. How do I help her? Is it okay to talk about dying with her? I do read to her, I tell her I love her, I see her as often as I can at her long-term care home. But as she declines, I am not sure how to help her “die well.”
I have had a great sense of healing in my time with her in this stage of life, but as I see her becoming less and less connected I am not sure what to do. How can I help her at this stage? Perhaps just being there, holding her hand, reading, I am not sure. How do we address her dying? Is it okay to talk about it? I don’t want her to die without being at peace about it.
We received this powerful note with searching questions yesterday from a listener in Vermont. What advice would you offer her, or suggestions on resources that would give her good counsel? Please leave them in the comments section and we’ll forward on. Many thanks for your help.
“I’ve been more than blessed with people, with miracles, with angels all around. When I’ve been in trouble and couldn’t get up the stairs, along came a neighbor, and she just said, ‘Can I help you?’…So I consider myself really blessed, and I want my children, I want everyone to know that they need to help one another. It comes back to them ten-fold.” —Ruth Wilkes, on what she would like to tell her family before she dies
Photo courtesy of StoryCorps and Suncoast Hospice (distributed with instagram)
It’s difficult to believe these days, when so many of us have had some experience of moving toward death with a loved one in hospice, or even a stranger on the CaringBridge website, how “badly” people died in this country until very recently. That’s the word Dr. Ira Byock uses. He began his life in emergency and family medicine and recalls that when people were deemed to be dying — when what was wrong with them was beyond “fixing” — they too often died in pain in the hospital or were simply sent home. Doctors practicing now still recall their training, implicit and explicit, that death was a failure of the body, and of medicine. We turned away from it, scientifically and culturally.
The palliative care and hospice movement arose first in England and then took hold in the U.S. in the 1970s and 80s to compassionately treat the pain of chronic illness and all the suffering — physical and otherwise — as the end of life approaches. Its spread has converged with the continued advance of medicine. In our lifetimes, many forms of cancer have transformed from fatal diagnoses to chronic illnesses.
Dr. Byock sees this as a human opportunity and challenge. Medicine is remarkable, he knows from the inside, and will continue to get more remarkable with the passage of time. But we must “grow the rest of the way up” and acknowledge that we have yet to make one person immortal. Even while we fight for life with all the tools at our disposal, we have to reckon with the reality of death. The good news, as he tells it, is that there are riches to be gained in that reckoning. That edge of life — which our miraculous medicine allows some to perch on longer than ever before — can be a time of unparalleled repair and celebration. Like it or not, as Dr. Byock says, death completes us. These days more than ever before, we can shape that moment of completion together with those we love.
With this kind of thinking, Dr. Byock is taking the impulse behind hospice to a new place. He goes so far as to suggest that dying can be a developmental stage of human learning and actualization — like adolescence or mid-life accomplishment. He names “the four things that matter most” — words that can be transformatively spoken and enacted — at the end of life: Please forgive me.I forgive you.Thank you.I love you. These are four sentences, a mere eleven words, with a power to call up a lifetime of struggle in so many of our families.
I think here of that phrase attributed to Oliver Wendell Holmes that has recurred so often in my interviews: the “simplicity that lies on the other side of complexity.” For in the time of life we call dying, as Dr. Byock describes, these elemental human capacities like thanks, love, and forgiveness can unfold in their most complex and immediately redemptive power. I love this quote of the theologian Paul Tillich, which he put in the preface of his book The Four Things That Matter Most, and which points at the way being with dying has opened Dr. Byock’s imagination about the word “forgiveness”:
"Forgiving presupposes remembering. And it creates a forgetting not in the natural way we forget yesterday’s weather; but in the way of the great "in spite of" that says: I forget although I remember: Without this kind of forgetting no human relationship can endure healthily."
One difficulty of this conversation is that there are no rules for when, in any life or any course of medical treatment, we can know we have crossed the boundary between fighting death and facing it. Dr. Byock suggests that this is not an either/or but a both/and. Still, there is something fierce and sacred in us that resists the end of our life and the death of those we love. That same impulse resists the kind of contemplation that happens in this conversation as well. One of Dr. Byock’s most basic insights may be his most helpful: we must remember that, even in the 21st century, death is never really a medical event but a human and personal event. Dying is a defining feature, strange and mysterious as it remains, of living.
"You feel your obligation to a child when you have seen it and held it. Any human face is a claim on you, because you can’t help but understand the singularity of it, the courage and loneliness of it. But this is truest of the face of an infant. I consider that to be one kind of vision, as mystical as any." ~from Gilead by Marilynne Robinson
I woke up and held my son for a long, long time. I’d been gone for three days at the National Tay-Sachs and Allied Disorders Family Conference and had missed him terribly. Driving through Boston on the way to the airport, I told my friend Kate that it was so difficult, so impossible even, so disastrous to imagine feeling that way forever. The missing, the ache.
We agreed that, say what you will about heaven or where we go or visions of the afterlife, the truth about someone being dead is that they’re gone from this life, right now, here on earth, with you. That particular person has been removed from your particular life. That’s the gut punch and there is no balm for that, no platitude, no prayer, and, I would argue, no belief even that will fix it. My son will be dead within three years and there’s nothing I can do about it.
"At one of the times that I’m supposed to be extremely miserable, I would say that this is the most loving I’ve ever been in my life."
As Rose Tisnado's physical body became ravaged by terminal cancer, she received regular visits from Robert Chodo Campbell, a Buddhist priest and co-founder of the New York Zen Center for Contemplative Care. Chodo used Buddhist practices including guided meditation and mindful breathing to help Tisnado stay present to what she was experiencing in the moment, which is profiled in the short film Love and Fear. Tisnado died in 2007 at the age of 57.
The Center is the first Buddhist chaplaincy training program in the United States that’s fully accredited by the Association for Clinical Pastoral Education. Trainees, approximately 46 of them to date, don’t have to be practicing Buddhists to enroll. The program’s instructors include rabbis, nuns, as well as Buddhists. They learn to develop a Buddhist contemplative practice, and also to support people in their own faith traditions.
What differentiates a Buddhist approach to chaplaincy care? As Chodo explains to Religion & Ethics Newsweekly, most chaplains are rooted in a theology and doctrine that has predetermined ideas and rituals for helping people through illness. Whereas Buddhists, Chodo explains, are “coming in from a place of just being present to whatever is arising in the moment.”
On January 1, 1990, Jeff Johnson, a gay man and pastor of First United Lutheran Church, and Ruth Frost and Phyllis Zillhart, lesbian pastors of St. Francis Lutheran Church are ordained in San Francisco. Both churches were suspended in 1990 and expelled by the ELCA in 1996. (photo courtesy of Extraordinary Lutheran Ministries)
My old English prof used to say “The Victorians were obsessed with death. We’re obsessed with sex.” I made an unexpected discovery on a recent assignment: sex and death have something in common: secrets.
In August of 2009, the Evangelical Lutheran Church in America (ELCA) voted to allow gays and lesbians in committed relationships to serve as pastors. As a reporter for MPR News, my assignment was to follow up a year later on the impact of the vote. I stumbled into a news story: the church was in the process of reconciling with partnered gays and lesbians who had previously been unwelcome. In July of this year, the ELCA added seven people back to its roster in San Francisco. Then, this September, they did the same with three women in Minnesota.
Two of the Minnesota women, Ruth Frost and Phyllis Zillhart, were the first lesbian couple to be ordained without the blessing of the ELCA in San Francisco in 1990. They invited me to their home for an interview.
For the next 70 minutes, their story spilled out, spanning a sweeping slice of a social revolution moving rapidly through in our times. They told of coming out, falling in love, losing jobs then gaining them, and feeling God work through them during the AIDS crisis and hospice chaplaincy. Their story transcends Lutheranism. It’s personal, yet tethered to movements on both coasts, inside churches, seminaries, universities, courthouses, and workplaces.
"When you’re a change agent," said Frost, "you act where you are. Some people do in the secular arena: political activists, social activists. Our arena was the church. I’m third-generation Lutheran clergy."
For me, the unexpected part of their story was how they connected their work in hospice with the battle for inclusion in the Church. Zillhart and Frost began their ministry in San Francisco just as AIDS was ravaging the city. As they plunged in to help the men, their partners, and their families prepare for death, the two women saw opportunities for forgiveness, reconciliation, respect, acceptance, and love.
The “tape” at the top of this post is my favorite, but I had to leave it out of the final radio version. My news piece needed to cover the ordination, expulsion, and eventual embrace — already a tall order — and I wasn’t sure my editor would let me wander into end-of-life stuff at all. Thankfully she did, and it gave the story more depth. I think it also showed what Frost and Zillhart have been striving to show all along: there’s more that unites people than divides them. We all have secrets. Death is a universal unburdening of secrets.
Sexual orientation can be just one of them.
"There isn’t a family that doesn’t have a secret that they yearn to share and talk about the hurts and hopes we all have," said Zillhart. "Our difference is more obvious, more politically charged, people do a lot of fund-raising around how scary we seem — that feels electrifying — but the differences we have are all among us. The commonalities are so much deeper."
Frost adds with a note of amused exasperation, “I would love to get past being an issue in the church as a lesbian. I’ve been a professional Lutheran lesbian all my life. It’s time to be meeting one another in deeper ways than that affords.”
Frost and Zillhart show just where that depth can take us.
Unedited Interview with Frost and Zillhart(mp3, 71:00) This interview is what I call “a spigot interview” — the story spilled forth with very little coaxing. Their narrative connects their individual lives to a larger canvas of social and religious history.
Sasha Aslanian is a reporter for MPR News and creator of MPR News’ Youth Radio Series. From 2000 to 2008, she produced documentaries for American RadioWorks, the national documentary unit of American Public Media. Aslanian has won awards named for famous news men: Edward R. Murrow, Lowell Thomas, Heywood Broun and Eric Sevareid. She is a graduate of Grinnell College.
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