Category Archives: end-of-life

Notes From My Second Death Cafe

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.

 

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We Don’t Have to Wait — What We Wish for the End-of-Life Is Likely What We Want Now

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.

 

 

How I Inadvertently Led the Women’s March in Oakland (Sort Of)

My wife and I had planned on walking together in the Women’s March this past Saturday. But pressing family issues came up on Friday, she had to cancel, so at the last minute, I signed up to be a marshall at the march, a “peace ambassador,” and I arrived at at Madison Park in Oakland early Saturday morning, where I got an orientation and a neon yellow vest.
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The park was still pretty sleepy at 8 a.m. Elderly Chinese were doing tai chi and badminton volleys on the west side of the park, and on the east side, a dozen or two volunteers were gathering and chatting. The sky was overcast, but there was no rain, and the sun peeked through now and then.

We all teamed up with buddies and one member of each team got a radio, and then we went over the route and various contingency plans. They divided us into groups by where we were standing and I ended up as one of three dozen or so volunteers whose job it was to create a wedge in front of the lead banner, clearing the center of the street for the march and creating enough space in front for photo ops.

This proved to be more complicated than I imagined. By the time we left the park, shortly after 10 a.m., the streets were so packed with people, we had to clear a path before the march could start.

At 9th and Oak Street, about 30 to 40 of us peace ambassadors held hands, formed a V-shaped wedge, and walked north on Oak Street, gently herding people from the center of the street to the sides. We walked about two blocks, trying to hold the space behind us as we moved forward. Then about half of us turned around, and went most of the way back, to where the folks holding the lead banner had set up, across four lanes of Oak Street. A man named Stefan with a megaphone was directing us — it felt like a military operation even though we were marching for peace.

(One fellow marshall noted, that of course, we had to have a man with a megaphone giving orders at the front of a women’s march. But he knew what he was doing, and the vast majority of the marshals in the front and the people behind the lead banner were women.)

Later on Saturday, someone shared a CNN video on Facebook of marches throughout the county, and there I was in the upper left corner of a clip from Oakland. With my fanny pack and bald spot on the top of my head. You can see the space we created in front of the banner.

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Here it is from further above. See that empty space behind the wedge.

oakland2

And here’s what the lead banner looked like from the front. (Photo by James Lerager.)

womens-march-lead-banner

We started marching. We were directed to slow down, speed up, and now and then to stop and kneel, so photographers could get a better photo. “If only,” someone quipped, “someone was documenting this amazing march.” If only.

One of my buddies, Lily, was at the apex of the wedge for most of the march. I shouted over to her at one point, “Hey, Lily, I bet you weren’t expecting you’d be leading the march.” She shook her head and smiled.

photo-3-1I was on her left, about three or four people away, walking sideways for much of the march, holding hands with Jane, my other buddy, a few feet ahead of me on my right, and a man whose name I never learned a few feet behind me on my left. Sometimes both my arms were being pulled, in opposite directions. We didn’t always stay in formation, but the wedge worked the way it was supposed to. I had never given much thought to how to manage a march. It was harder than I expected, especially with crowds in the tens of thousands. We heard estimates ranging from 60,000 to 100,000. I was in no position to assess the size of the crowd, other than it was larger than organizers expected. And everyone was peaceful. 

The energy, the camaraderie, the creativity, the love was palpable. It felt as much like a celebration as a protest, though of course, the signs were defiant.

Some of my favorites.

“Girls just want to have fun-damental rights.”

“You’re so vain, you probably think this march is about you.”

“The future is female.”

“We are the wall.”

“I would not want to be the guy who pissed all these women off.”

A wonderful day. A wonderful march. I’m so grateful I stumbled into the opportunity to lead it. Sort of.

I’m going to treat this experience as if it’s a metaphor for something. Now I just need to figure out what it is.

Thanks to all the hard-working folks who organized the march. Now we start the really hard work.

If you haven’t already gorged on march photos, here are more from the Oakland march, courtesy of James Lerager.

slide-show

Politically Correct Dating

Here’s a silly piece I wrote a long time ago and dusted off last year for an audition.

I pride myself on being a sensitive enlightened feminist man. I’ve read Our Bodies Our Selves twice, once in hardback, and I never exploit women by opening doors for them.

I have a tough time at dances, however.  I love dancing, but asking a woman to dance without compromising my integrity is where I get hung up. I can’t ask a pretty woman to dance because I’d be imposing my patriarchal standards of beauty on them. So I look for a woman I’m not attracted to. It’s even better if she doesn’t like me. Or men.

But then my body language gives me away. She can sense I don’t find her attractive, and I end up oppressing her by judging her with my internalized sexist standards, and we both feel terrible.

Fortunately, when I met Jenny, the music was loud, and we were dancing before I had a chance to think through all the socio-political implications. We made a date for the next night.

She came over to supper, because it’s hard to find a restaurant that can accommodate my diet. I used to eat meat and other oppressed foods. But now I don’t eat anything that requires the killing of any animals — or plants. I only eat fruits and vegetables that have already died of natural causes. (Of course, I also include onions in my diet because cutting onions is how I learned to cry.)

I was sobbing over the cutting board when Jenny arrived. One look at the wilted carrots on the table, and she said, “Let’s just catch a movie.”

But I had already made plans—to ride our bicycles to a civil disobedience against fracking. The perfect first date, I thought, getting arrested together for a good cause.

But on the way, she ran over some glass and got a flat tire. “It would be patronizing of me to offer to fix this,” I said, “so I’ll let you do it.”

“I’ve never been treated like this before,” she said.

I explained that that was because most men put women up on pedestals and don’t allow them to achieve their full potential as human beings or, in this case, bicycle mechanics.

“I don’t believe what you’re saying.”

“I forgive you for that,” I said, “because I understand that your mistrust of men is based on centuries and centuries of brutal oppression of women by white men, like myself. And—”

“You are one of a kind,” she said, “And why are you putting that broken glass in your pocket?”

“To recycle it course,” I said, but by then, she had hailed a cab and vanished. She didn’t even write or call me in jail.

I guess I’m just not as sensitive as I thought. So I’ve recently started a support group for men—the White Man’s Burden Support Group—because it’s crucial we men become more attuned to the plight of women.

Our first act of solidarity—since we’re not able to menstruate—is to go down to the Red Cross once a month and donate blood.

 

 

Why Design Matters

OR

From My Kitchen Cabinets to the Russian Far East

Last year, I devoted many months writing and designing the Conservation Investment Strategy for the Russian Far East—which was about, among other things, growing markets for wild salmon in Kamchatka, scientists and indigenous hunters teaming up to monitor walruses in Chukotka for climate change impacts, mobile fire brigades fighting wildfires accidentally set by farmers burning their fields. More fascinating than you might think.Conservation Investment Strategy for the Russian Far East

The client, Pacific Environment, was thrilled with the report and I was proud of it too. It’s some of the best work I’ve ever done.

What I found interesting, though not surprising, was that almost all the kudos were about the design, even though that accounted for only a quarter of the work.

That’s probably because most people didn’t read the entire 80 pages. And those few who did appreciated that the design elements reinforced the message of the document.

It’s a reminder to me, as a writer and designer who identifies more as a writer, that in many cases, design is as important or more important than the words.

My plan here is to deconstruct my design process to see if I can learn from what I did, and maybe others can as well. It’s not that I didn’t consciously make decisions along the way as much as that I’ve been a designer for decades and some of those decisions were almost intuitive. Looking back I can see more clearly what I did.

Screenshot 2015-02-20 14.37.21

A word about the writing part. There was heavy slogging along the way—I had to distill hundreds of pages of dry scientific language into a compelling narrative, and there were moments when I was pulling out my hair. It’s not that the content I had to work with boring, though some of it was. But it wasn’t exactly high in entertainment value, so one of my goals was for the casual reader to get the basic message from the decks and captions and headlines.

Here’s an example—I didn’t have a photo for this story, but the concept was pretty straightforward, that satellite photos could document pollution much more effectively than a government agent who has to make an appointment to visit the mine.

Gold-Mining-Example

What Do Readers Read?

Photos, of course, play a huge role, not just the images themselves, but the captions, which get read, depending on who you listen to, four times more often than the body text. The best captions reinforcing the message of the document. So, for example, the caption for the photo below of two tigers growling at one another doesn’t reference the photo directly, as much as it provides important context—how there are only 500 Amur tigers left in the wild, but they are on the rebound.

Screenshot 2015-01-20 12.16.22

There’s no need for the caption to repeat what the reader can see in the photo.

I also looked for ways to feature people, in the narrative and the images. So much of the content I had to work with was scientific, like the names of threatened species, or fishing harvest data.

The chapter on Chukotka, which is across the Bering Strait from Alaska, and equally frigid, didn’t have a lot of compelling stories. All of the photos I had to start with were of stark landscapes. None of people. In my search for better images, I came across a wonderful website and story by a photographer from California, Sasha Leahovcenco, who was born in the former Soviet republic of Moldava and journeyed to Chukotka to take photos of indigenous people there, most of whom had never seen photographs of themselves before. He was happy to let me use his photos. Here’s one of my favorites.

Screenshot 2015-01-21 10.11.58

Five-Column Grid—It’s Great to Be Odd

Even though I’ve designed dozens of reports like this, I deliberated carefully on what kind of grid to use. Mostly, for reports that are standard 8.5” x 11” size page, I use a simple two column grid, but for something long and complex like this, with maps and photos and charts, I chose five columns, which allows for both uniformity and variation. The default layout was two blocks of text, one two columns wide, the other three. It’s more interesting than two columns the same width.

It also allows for one column of white space when necessary. I found this very helpful for fitting copy. When text was added or cut, and I didn’t want to add extra pages, I could expand or contract the column width and still have a unified look.

Here are two chapter-opening spreads where the left-most column is primarily white space, and the right page uses the 2 + 3 grid. Then comes a text-heavy page with 2 + 3 on both the left and right side.

Screenshot 2015-01-20 12.34.42


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Screenshot 2015-01-20 12.38.26Note also how the map, which is a dominant element in the first spread above, is used on a smaller scale at the bottom of the second spread, as a locator map for the particular region being addressed, in this case, Chukotka. Maps are especially important when readers may not know the area, but even when they do, they help anchor the story.

Another design element that helped orient readers (pun intended) was including a mini-contents box at the bottom of each chapter’s opening page to supplement the map. This was a big and complicated document, and though these mini-tables of contents were redundant to what was in the main table of contents, I wanted to make it as easy as possible for readers to know where they were and what was coming.

Color Bars

Arguably, the most important design decision was to use wide horizontal bars in gold, olive, and rust to feature what I call “decks.” (They are often referred to as “pull-quotes,” but for this project, I more often distilled an important point into a sentence that might been a paragraph in the text.)

Like the grid, the regular use of the color bars contributed to a unified design, but they were even more versatile than the grid.

Because I used the color bars in a slightly different way each time, I was able to use them more than a dozen times without being repetitive. What was consistent was the color palette, the height of the boxes, and the typeface, and what varied was the length and placement of the stripes, and the specific colors. In some cases where there were three lines, I used all three colors. In some cases, all three stripes were aligned on the left. But other times, I staggered them or only used two colors. (In a few places, where I was already using the olive green as a background, I added a fourth color, a darker green to the color bar palette.

Below are a some examples. You can see that the placement, alignment, colors, and length vary, and of course, the words do too, but the palette and typeface keep things unified.

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Screenshot 2015-01-21 10.15.52 Screenshot 2015-01-21 10.18.53

From My Kitchen Cabinets to the Russian Far East

Choosing a color palette is one of the most important parts of a design, and there are almost an infinite number of options.

I knew I wanted warm colors to counteract the arctic content. I started with rust, one of my favorites, and before I realized it, I was working with roughly the same colors I painted my kitchen cabinets in Berkeley a decade ago. (I know I can’t keep using the same colors over and over, but recycling a palette every ten years doesn’t seems to be a problem.)

Back around the turn of the century, my kitchen cabinets were medium brown wooden doors and drawers that were becoming increasingly ugly with wear and tear. On a trip to Mexico, I purchased colorful ceramic (Talavera) knobs from street vendors in San Miguel de Allende, and my plan was to paint the cabinets white and add the knobs for color. The first few I painted didn’t look as interesting as I’d hoped.

So I played with some richer, more intense colors, and after some trial and error ended up with three colors—rust, gold, and olive green. You can see the cabinets here.

Screenshot 2015-01-21 10.42.30

Reinforcing the Message, Telegraphing the Character

Design that is visually appealing and memorable is a strong start. But not enough. The most critical element of good design is that it telegraph and/or reinforce the message and character of the content. Is it authoritative? Whimsical? Serious as death? Important, but not self-important. In the case of the Russian Far East document, it was important to get across the comprehensiveness of the report. Because the length of the report and the long list of contributors at the beginning already characterized it as comprehensive, I didn’t need to do much more with the design to reinforce that. Instead, my primary design goal was to make the report more engaging and welcoming. The colors and the maps and the intimate closeups of people helped with that.