by John Byrne Barry | Jun 27, 2019 | End of Life
On a spring afternoon at the Mill Valley Library, more than fifty people filled the Creekside Room to talk about death. Leading the discussion was Dr. Dawn Gross, UCSF Palliative Medicine Physician, who also hosts the KALW radio podcast series, “Dying To Talk.”
I spoke with her on the phone the week after the workshop.
Tell me about your journey to focus on death and dying.
When I went to medical school, I did so as a scientist. I had no interest in practicing medicine. My father was an administrator for Kaiser Hospital and he told me the doctors hated him. What kind of people would hate my father? I didn’t want to be one of them.
My scientific mentors steered me toward an MD and PhD, in immunology. When I finally started seeing patients, what I learned was counterintuitive. Don’t touch patients. That made me second guess myself.
I was on a clinical rotation when I first witnessed a patient about to die, and I was ready to burst into tears. I left the room, went into the hallway, and cried. The supervising clinician found me and said, “Don’t ever do that again. And don’t think I don’t go home and cry every night.”
But later that year, I watched a doctor leap onto the exam table next to her patient and put her arm around her. Oh, I thought, you can do that?
I picked the subspecialty of bone marrow transplants, because every single patient is a new immunological puzzle. I had no med school training in bone marrow transplant, and it was a steep learning curve. I started seeing people die and I was a deer in the headlights. We knew they were going to die, but we didn’t talk about it. I remember this one young man, seeing him on rounds. When we walked out of his room, my attending said, he’s going to die. I was thinking, what did he see that I didn’t? But what stayed with me most was that we didn’t tell him that he was dying.
We didn’t talk about it as a team after he died. It didn’t occur to me that we could do that. We didn’t have the language.
Around that time, my father became terminally ill, and that shifted my orientation.
I remember my father saying to me, “why is no one asking me what I want?”
He knew he was dying, and I realized that he had started an advance care conversation with me when I was a child. One day he had taken me to work, at Kaiser in Oakland. “Dawn, I want to show you something,” he said. “When people are walking down the halls, they aren’t looking at the signs, they’re looking down at their feet. I decided we should paint lines on the floor.” We stopped where the pink and green diverged. Pink was maternity. Green was intensive care. “Dawn,” he said, “I need you to know I would never want to go down the green line. I would much rather the time and money go toward my grandchildren’s education.”
At the time, I wasn’t thinking about the end of his life. I was thinking, oh, he expects grandchildren. I felt the weight of that responsibility.
For reasons I attribute to my father, I came to learn about this new specialty, hospice and palliative care. It didn’t exist when I was in medical school.
When was that?
2008 is when hospice and palliative care became a formal specialty. So fast forward, when my father died, I stopped everything. I was in the thickness of grief, and I had no resources. I reached out to the VITAS Hospice, and met the medical director, who became my mentor. “You clearly have a hospice heart,” he told me. He took me under his wing and trained me like an old-fashioned apprentice. I saw patients with him, watched his every move.
I felt like, this is what I’ve wanted to do all along. I found my people.
I’m very much a supporter of your approach, and getting people to talk about death. But is there evidence to support that?
There is. The palliative care field is looking at this. Asking questions like, did so-and-so die in accordance with their expressed wishes? The likelihood that that will be the case is correlated with whether they had conversations prior to their death. They found that those who did had better experiences than those who didn’t.
This is also true for the surrogate decision-makers, who often wonder if they made the right choices.
(Note: This study from the Dana-Farber Cancer Institute found that cancer patients experienced less anxiety and depression when they had end-of-life conversations.)
You work with patients who are dying. How do you balance compassion/empathy for your patients with taking care of yourself, not getting too caught up in loss. I know a cancer doc and one of her challenges is getting too emotionally invested in patients.
I reject that thinking, that physician burnout is because of being too emotionally involved. Yes, I was taught to separate my emotion, put boundaries between my patients and me, but I don’t agree with that approach.
So are we making progress in terms of getting more people talking about death? On the one hand it seems like there’s so many people and groups doing amazing things. On the other hand, most of it is invisible to mainstream society.
Well, we don’t always get a full house like we did in Mill Valley. We do see, however, that a lot of people are hungry to engage in this conversation. We have to address the challenge that for many, the word death is a turn-off.
We have to look at more accessible ways to explore end-of-life. For example, there’s this group, Reimagine End of Life, that’s hosting a week of events this fall in San Francisco. Art, music, comedy, spirituality, dancing in cemeteries, plus advance care planning. There’s a culture-changing movement going on. The first gathering was here in San Francisco in 2016. It brought together the entire spectrum of ages. There’s a millennial mindset. With the arts as an entry point.
We recently led a workshop at a high school in Oakland. Death Ed. Like sex ed, but for death. When we first approached the school, I expected they might be hesitant. But the kids were engaged.
We have to reject this assumption that death is an inappropriate subject for kids. We’re not born afraid to talk about death. We’re born curious. Kids look at their pets that have died and in that moment, they want to understand what it means. It’s how we as the adults in the room respond that makes the difference.
I remember when, as a child, our cat died, and my father told us we were fortunate that our cat came home to die with us.
Death is something sacred. Something that brings us together.
by John Byrne Barry | Apr 26, 2019 | End of Life, When I Killed My Father
I heard Ram Dass on the radio telling a story about a Chinese farmer who is too old to work in the fields any more. He sits on the porch watching his children tend to the crops.
One day, his eldest son lugs a wooden box to the porch. “We’ve got too many mouths to feed,” the son says. “Get in the box.”
The old man gets in. The son puts a lid on the box and drags it toward the cliff at the edge of the farm.
He hears a knocking from inside the box. Takes off the lid.
His father sits up. “Son, I know what you’re doing and why, but might I suggest that you lift me out of the box and throw me over the cliff. That way, the box will be there when your children need it.”
That’s not quite the theme of my upcoming novel, an assisted-suicide family thriller called Why I Killed My Father, but it’s in the same universe. Without intending to, I’m now knee deep in writing about death and dying.
A few alarmed friends have reached out and asked if I’m OK. I am. Yes, I am going to die just like everyone else, but I’m healthy and active now and I’m hoping for several decades more. But I have been devoting far more of my energy to thinking and talking and reporting about death, and it’s not as morbid as I might have expected. I know it’s a cliché, but it’s true. Being more aware of death — our own as well as others — can make life more meaningful and precious.
That said, I know that many people are not necessarily waiting in line to talk about death, let alone read a novel about death. One friend, upon hearing what I am working on, said, “I’ll pass and wait on your next effort.”
I was disappointed to hear that, but I get it. Which is why I’ve worked hard to make this book as entertaining as possible. I call it a “page-turner with a conscience” — it moves like a thriller, but without explosions. Well, I guess there are explosions of a sort.
If all goes well, the book will be out this fall. You can read Chapter 1 here.
(I’m seeking a few more beta readers. Let me know if you’re interested.)
by John Byrne Barry | Apr 11, 2019 | End of Life
You might think that talking about death would be somber, and yes, sometimes it was.
But there was plenty of laughter. One man introduced himself by saying, “Today is a banner day. Today I’ve lived longer than I’ve ever lived before.”
One woman told the story of a friend, who, when she learned she had inoperable cancer, said, “Oh, I don’t have to go to work anymore.”
One man said he was comfortable with the idea of dying, but he couldn’t get himself to move on the paperwork like his will and advanced directive.
We heard about a woman with a terminal disease who was determined to end her own life and planned her suicide so thoroughly, she even sought out a partner for her soon-to-be-widowed spouse.
Another participant told about a friend who was dying who asked to have his funeral before he died, and he did, with a marching band and a theater troupe performing skits, and then he died two days later.
We even heard about a new attempt to use virtual reality to help people prepare for death. You put this contraption on your head and experience entering into a different reality.
But there were also tears. One woman, whose mother had died a number of years ago, found herself unexpectedly crying. She had missed her mother’s death, and is still grieving over that.
This Death Cafe, on the last day of March, was hosted by Sukhasiddhi Foundation (pronounced suka city), a Buddhist meditation center in Fairfax, California. I had attended one in the same venue four years ago — see My First Death Cafe — and for almost everyone who came then, it was for the first time. This time, at least half had attended one before.
Death Cafe is a “social franchise,” which mean anyone can host one, use the name Death Cafe, post their event to deathcafe.com, and speak to the press as an affiliate of Death Cafe. The events are usually free or for a small donation. There’s no agenda, or intent to sell people on a product or idea. And there’s always coffee and cake. It’s a discussion group, not grief support or counseling.
The Death Cafe model was founded and developed in 2011 in London by Jon Underwood and Susan Barsky Reid, and built on the ideas of Swiss sociologist Bernard Crettaz, who opened a Café Mortel (Death Café) for an exhibition in his Geneva museum called La Mort à Vivre (Death for Life).
Pat Berube, a teacher at Sukhasiddhi, facilitated this gathering and said that since the Death Cafe started, more than 8,000 gatherings have taken place. All over the world, primarily the western countries, but in April, there are Death Cafes scheduled in Lagos, Nigeria, and Lázaro Cárdenas in Michoacán, Mexico. There’s even a Virtual Death Cafe meeting online on April 12 via Zoom.
Since I attended my first Death Cafe, the founder, Jon Underwood, died of leukemia at 44. I also learned that the man who led the Death Cafe in Fairfax four years ago had died as well. (I do remember that when he introduced himself, he said he had a terminal disease.)
What’s also happened in the past four years has been an explosion in the end-of-life movement. More organizations are promoting talking about dying. More doctors and medical practitioners are urging a change in how we approach death.
The Netflix documentary, End Game, gives viewers an intimate look at dying patients at UCSF Medical Center and the Zen Hospice Project in San Francisco.
Another documentary, Extremis, which was nominated for a 2017 Academy Award and 2 Emmys, explores end of life-decision-making in the intensive care unit
Dr. Atul Gawande’s Being Mortal, published in 2014, has been hugely influential. Pulitzer-Prize winning columnist Ellen Goodman founded the Conversation Project to make it easier to initiate conversations about dying.
This fall, in San Francisco, a group called Reimagine End of Life, will be hosting its second gathering exploring death through music, comedy, dance, and the arts.
There are more than 100 Death Cafes scheduled this April, from Denmark to New Zealand to Texas. Sukhasiddhi has hosted more than ten in the past five years.
At the Sukhasiddhi gathering, after introductions, we settled into discussions at tables of four or five, and we took turns talking about why were there. I spoke about my mom dying last year, at 95. But more about her decline—how she lost her sight, then her mobility, then her mind. We had a small crowd on a sunny and gorgeous Sunday afternoon, but it was a very moving, intimate, and profound experience.
I left feeling grateful.
You can find a Death Cafe near you at deathcafe.com.
by John Byrne Barry | Mar 13, 2019 | End of Life
No one wants to talk about death, right? Most of us would rather talk about anything, even sex or money.
So it was somewhat of a surprise to arrive at the Mill Valley Library on a March afternoon to find the Creekside Room packed for a “Plan Well, Live Well, Die Well” workshop. (Somewhat of a surprise? Well, Mill Valley.)
The workshop was the first collaboration between the library and Mill Valley Village, a volunteer membership organization that helps older adults remain active, independent, and connected. It was led by the three founding members of Dyalogues — a Bay Area- based company dedicated to facilitating conversations about death and what matters most in our lives.
UCSF palliative medicine physician Dawn Gross, business development consultant Nancy Belza, and marriage and family therapist Paul Puccinelli kicked the workshop off by introducing themselves, describing the goals of the workshop — for participants to “have what they want, by starting with the end in mind” — and then passed out decks of cards.
We each received a deck of 43 cards, and we were to imagine that we were seriously ill, near the end of life. Each card had a wish. Such as:
— To die at home.
— To be clean.
— Not to die alone.
— To forgive (or make amends).
— Not to lose my dignity.
We were instructed to go through our cards and put them in three stacks — what we want most, what we pretty much want, and what maybe isn’t all that important.
(It was a challenge for me not to put almost all of them in the first pile, and I’m sure that was the case for many of us.)
Then we were asked to take that first pile, the cards with the wishes that resonated most for us, and narrow it down to three.
I picked: To be at peace. To be with people I love. To keep my sense of humor.
(I figured that if I’m at peace and I have my sense of humor, I can weather losing my dignity and not being clean.)
Then we worked with a partner, or two, to dig deeper. We were supposed to ask questions to help our partner get as clear as possible about what he or she wanted.
Dawn and Paul modeled the conversation for us. One of Paul’s wishes was: To be with people I love. Dawn asked him who those people were. Paul said his wife, his two children, and his dog.
Dawn asked, what does it mean, to be with them?
I’m in a bed at home, Paul said, and my family is being normal and I’m part of it. (Then came a discussion about whether the dog would be allowed on the bed — yes — and how some hospitals now allow animals for end-of-life patients. One participant also mentioned that there’s a way, through the SPCA, to arrange care for your pets after you die.)
We had half an hour to discuss our wishes with our partner(s). My partner and I got through two of our cards. In regards to my wish to be at peace, she asked me if I was at peace now, and I said yes, but not as much as I could be.
One of her wishes was to forgive (and make amends), and when I asked her to tell me more, she said there were people who had wronged her who were no longer in her life, but they were, “still renting space in my head.”
We both noted that what we wished for on our deathbed was just as true for the present, but we didn’t grasp until the wrap-up that that was intentional. That what we wish for the end of our life is generally what we want today.
“Take home number one,” said Dawn, once we finished our discussions. “This is about now. You don’t have to wait to have these conversations. What matters to you as you imagine the end of your life most likely matters to you now. If there’s a playlist of music you want to hear when you’re dying, don’t you also want to listen to it now?”
She did remind us, however, that what we want evolves. “My husband and I play this game every year on our anniversary. It’s one of the most intimate conversations of the year.”
With people we know well, she suggested we play the game in reverse. Instead of sorting the deck for ourselves, we sort it for our partners. See how well we know them.
She uses the cards with her patients, some of whom are too weak to hold conversations. She holds them one by one, sees if they nod.
The wish cards are not available yet — we were the first to use this particular set — but they will be later this year. But, of course, you don’t have to wait for a deck of cards to talk about your wishes.
—
To learn more about Dyalogues, go to dyalogues.com/. You may also be interested in listening to Dr. Gross’ KALW radio podcast series, “Dying To Talk.”
To learn more about Mill Valley Village, and its parent organization Marin Villages, go to: marin.helpfulvillage.com/.
To find out more about future workshops like this, and other wonderful programs at the library, sign up for the Mill Valley Library email newsletter at millvalleylibrary.org. (That’s how I found out about this workshop.)
Also, the San Francisco Public Library has just started a new series called “Death & Dying: Rest in Peace,” with a free program every month through September.
by John Byrne Barry | Apr 21, 2017 | Murder Mystery
Ever been part of some big production and thought, “I can do better.” And then you had to follow through?
Over the past few years, I performed in two murder mystery plays here in Tam Valley. The scripts were purchased online, and I was not the only one unimpressed with them. More than once I said to myself, “I can write something stronger than this.” I might have even said that out loud a time or two.
To our credit, the actors and director in our Tam Valley Players pulled off entertaining shows, adding our own jokes and schticks, and involving the audience in solving the mystery.
Shortly after our short run last spring, I proposed writing the script for the 2017 show — titled “Publish or Perish: Tam Valley Mystery Writers’ Retreat Murder Mystery,” about a mystery writers’ retreat with real murder. I got the green light, and an August 1 deadline. The script was supposed to have roles for 12 to 14 actors.
Scenes from dress rehearsal. Photos by Barry Wasserman.
Then I sat down in front of a blank screen. Yikes! Be careful what you wish for and all that. Where did I get this idea I could be a playwright?
I’d never written a murder mystery play before. More than 30 years ago, I did write (and direct) a political Christmas comedy called “You Better Watch Out,” about Santa Claus fighting a corporate takeover and refusing to hawk military toys, like GI Joe.
But there were only six actors and it wasn’t a mystery.
I had written two novels, one a mystery, the other with a mystery subplot, and read thousands of mysteries over the years, including, back in my youth, almost everything Agatha Christie ever wrote. I’d even played Clue now and then.
I told myself that, daunting a task as this was, a play is all dialogue and that’s what comes easiest to me. Many an early draft of scenes in my novels has just been people talking. I had to go back and aerate the dialogue with setting and internal monologue. That’s not necessary in a play.
And I reminded myself that part of why I wanted to do this was because it was hard. Because I could fail.
Still.
Formula + Creative Twists
Though I found a few useful tools online, mostly I started by deconstructing what had worked in the two murder mysteries I’d performed in. The advantage of writing a murder mystery is there’s a formula. That’s also a disadvantage because, well, let me quote from one of the early scenes in the show.
Rooster, a singing cowboy writer, is flirting with Olive, author of a successful series of vegan detective mysteries. “Your books are fun,” he says, “but the plots are so predictable, I mean, the murderer is always the meat-eater.”
So my plan was to use the formula as a starting point, and add my own twists and turns and clever ideas so it wouldn’t be too predictable. Create my own formula.
Here’s what I came up with.
1. Involve the audience.
Audience participation is what makes the murder mysteries so much fun. For our Tam Valley shows, the audience comes for dinner beforehand and sits at a table for ten. Many are longtime residents who’ve been coming for years, and/or family and friends of the performers.
After dinner, we start the scripted show, then comes intermission and dessert, and then, toward the end of the second act, we stop the show, ask each table to discuss among themselves who they think committed the murder and why, and pick a table captain. The table captains report their votes, the accused respond, the play wraps up and the real murderer is revealed.
Involving the audience is risky, because you never know what’s going to happen, but that uncertainty, and the social, community feeling, is integral to the dinner theater experience. The audience doesn’t come to passively watch a show. They come to share a meal and solve a mystery.
2. Closed-room mystery.
The murder mysteries take place at a remote resort, a family reunion, a dinner party — always a closed room of sorts. The murderer, and the victim, are always characters we’ve already met. He or she is never someone who comes in off the street.
3. Lots of suspects and motives.
The more suspects the better, usually, though the characters need to be distinct and the motives clear and plausible. One problem with lots of characters, however, is that the stage can get crowded. We ran into that problem.
Because they all have motives to kill, the characters almost all have disreputable histories and/or secret lives, or at least secrets. What you see is not what you get.
4. Over-the-top characters.
The characters need more than motives. Since I was going for laughs, I wanted big, broad, cartoonish characters — the egotistical showman, the flaky facilitator, the pompous professor, the self-loathing hack.
What I aimed for was a tricky blend of cartoonish and over-the-top, but with real human emotions, like yearning, like regret. For example, Jake, the murder victim, retreat host and M.C., is a narcissistic con man and philanderer who everyone hates. But he’s also tired of hustling. He longs to turn over a new leaf, be a better person. (Spoiler alert: He’s too late.)
5. Complicated plot with clues and red herrings. But not too confusing.
While my first priority was that the show be fun and funny, I did want the story and mystery to hold together. We know from previous shows that audience members take solving the mystery seriously, and pay close attention to the clues.
Unfortunately, my plot was complicated enough that the actors didn’t understand it even after weeks of rehearsal.
The premise was that Jake and Stormy, the bickering husband-and-wife hosts of the writing retreat, are in desperate enough financial straits that they hatch a scheme to boost attendance for future retreats by staging a murder. Of Jake. A mystery writers’ retreat with a real murder! That is, a fake murder than appears to be real.
Stormy turns the staged murder into a writing prompt, essentially getting the writers, who paid to attend, to generate publicity for the retreat in their blogs and twitter feeds. Pretty brilliant, except the fake murder leads to a real murder and Jake ends up dead. Maybe not so brilliant.
6. Twists and turns.
Here’s one of the jokes in the show: How many mystery writers does it take to change a lightbulb? Two, the first to screw it almost all the way in, and the second to give it a surprising twist at the end.
As with mystery novels, these plays need a twist or two to keep the audience guessing.
I added a couple twists in addition to the fake murder, the main one being that the most obvious suspect committed the murder, but as she says when she’s accused, “Haven’t you ever read a mystery? It’s never the obvious person.”
7. Data Scraper App collects video clips.
In the second act, instead of a traditional investigator running down the clues and suspects, I created an “app developer,” a writer already at the retreat, who is deputized to investigate the murder, and his Data Scraper App, which scours all the security camera footage, as well as videos, texts, and more from everyone’s phones.
Using an algorithm, the app determines which video clips are most relevant to the murder, and the actors are “pulled” into a frame, like a large TV. They enter at fast-forward speed, then slow down to act out the scene.
The actors rebelled against this idea, urging me to consider real video instead of pretend video. But that’s a story for Part 3. Directing — Creatively Exciting, But Herding Cats. (Still a work in progress — link to come.)
8. Greek chorus.
Hiding behind a prop and eavesdropping on the private conversations between retreat workshops is Trixie, Jake’s majordomo — one-part Puck, one-part Quasimodo. Then, like a Greek chorus, shares her take on the proceedings with the audience.
As the play proceeds, she tells the audience that she’s writing her own tell-all mystery — the Tam Valley Mystery Writers’ Retreat Murder Mystery. “Don’t worry,” she says, “It’s fiction.” (One of my favorite parts is at the end when she is handed a package, and pulls out a copy of the book that she has somehow managed to write and publish during the course of the play.)
The First Reading
I made my deadline, and scheduled a reading, in mid-August, at the community center, inviting potential cast members and some friends and family. We got an excellent turnout, enough actors to read all the parts. I read the stage direction.
But it did not play out the way I hoped.
What did I hope for? That there would be gales of laughter and buckets of praise. People tugging at my arm and gushing, “This is brilliant.”
Instead, I heard actors who hadn’t read their parts in advance deliver what were supposed to be funny lines without the funny. The reading dragged, took far longer than when I read it out loud to myself.
And then there was the feedback.
Too many characters.
Too many words.
Too many video clips.
Not enough physical action.
Too confusing a plot.
Characters not clear enough.
The fake murder doesn’t make sense.
It was painful. They didn’t get the plot twists I thought were so clever. There were long stretches with no laughs.
I reminded myself that this was what I wanted. A roomful of actors reading my script and giving me feedback. I wanted to write this script and I did. I put myself out there. Took in what everyone said, acting as if hearing critical comments didn’t bother me. At least I knew not to defend myself.
There’s a note I make in the margin of my drafts when I know something needs to be improved.
Make better.
The day after the reading, I started making the script better.
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