“You’re going to die. Why not die well?”

One instance of serendipity in exploring “death” as my One Word for 2026 is my retirement community’s simultaneous decision to host a 13-session, yearlong program on death and dying for our residents. The timing was ideal for me. The program provides the practical and social perspective for my emotional and spiritual probing.

I’ve been so impressed by the presenter’s sensitive and comprehensive treatment of end-of-life matters and planning that I asked if she would be willing to talk with me in depth about how she got into this line of work and what it means to her. She obliged, and after a lively hour together, I ended up with a ten-page interview transcript, which I have distilled into this blog post.

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“You’re going to die. Why not die well?”  asks the headline on the home page of Leona Oceania’s website, Die Well Death Education.

Leona Oceania

Good question. If we must die, who doesn’t want to die well? And what might dying well look like? 

If anyone can make learning about death, dying, and our options for a good death downright compelling, it’s Leona. Previous attempts to discuss human mortality in my community had been poorly attended, and the conversation shy and stilted. However, this time, from the start, Leona packed the room.

Her appeal, at least for me, and I suspect for others, is threefold: she knows her stuff and is an eloquent communicator; she’s passionate about her mission to educate; and she sets a frank and open tone that emboldens her audience to ask questions they have not previously dared ask and discuss topics they have formerly avoided.

Like many others zealous about their vocations, Leona was awakened and inspired at a young age by a deeply personal experience that set her on the path to the work she loves. Though she had always been fascinated by death and puzzled by others’ unwillingness to talk about it, her biological father’s death from lung cancer in 2003 was her wake-up call. In her words:

              “He was getting all the treatments, and it was not benefiting him in any way. I knew a little about hospice, and that it was a beneficial thing, so I suggested it and got a very negative reaction initially from the rest of the family. Ultimately, though, he did end up at home in hospice, and it was an amazing experience for everybody, though it was sad and overwhelming. He was young, only 54 when he died.

“I remember the critical moments that really set me on this path. He had a hospital bed in his living room, and his five brothers and sisters, my half-sister and I, were there. It was just the family in and out, but people were staying there and being with him. Eventually, he was unresponsive for about two or three days and was obviously getting closer to the end. It was January, and it just kind of organically happened that one of my uncles built a fire in the fireplace, which was right at the foot of his hospital bed. We all came into the room, mostly because the fire had been made, and we were sitting around. Wayne, my biological father, hadn’t been conscious for days. Suddenly he opened his eyes and looked directly at every single one of us. And then he closed his eyes, and he died. Wow. It was just amazing. It was sad, overwhelming, but also incredibly beautiful. I had never experienced that before, and it set me on the path to learning more about death. It was a pivotal experience. Once I started sharing about it and asking questions, I learned that others had similar experiences.”

Shortly after this occurrence, her grandfather, who knew of her interest in death, alerted her to the death café movement, and she began attending one in Portland, Maine. Her enthusiasm and desire to learn caught the attention of the Portland café’s founder, who, when she was moving in 2019, asked Leona to step in as facilitator. Seven years later, the café is still going strong, and Leona is still facilitating it and others in Maine. From the cafés, she learned about the End-of-Life Doula movement and signed up for online training. Things came together at the beginning of COVID in 2020 when she was laid off from her regular job and had extra time to devote to doula, home funeral guide, and life legacy training, all online. She had become a hospice volunteer just before the pandemic began, so she stayed in touch with her client through letters during the lockdown.

Once COVID lifted, she decided to dip her toe in the water to see whether a community-based death education program might be of interest. Through a colleague on the Funeral Consumers Alliance of Maine board, she contacted Portland’s West End Neighborhood Association and offered a program. It went well, so she offered another at her local library in Cape Elizabeth, then at the Scarborough Public Library, and she was on her way. After that, instead of convincing groups to host her, organizations recruited her. The Die Well Death Education brand was launched, and her programs are well received and well attended, with highly engaged participants.

Last year she presented one hundred programs, and this year she already has about 100 lined up. I asked Leona if this has become a full-time job, from which she earns a living. Her answer was halting: “Am I doing this full time? Yes, but I am still doing my regular job as well…Has this been, how do you say, lucrative? No.”

You see, Leona strongly believes the program must remain free for attendees.

“There are a couple of reasons for that. A, it’s hard enough to get people to talk about death without charging them money for it. And B, once you charge money, it seems to change the whole dynamic into something I don’t really want it to be. And then it also immediately excludes a whole bunch of people that need the information just as much as anybody else. So that’s not a very good business model. Most of the venues I present at are libraries or places already operating on a limited budget. So, even what I ask for as a fee is a stretch for them, but what I get for a fee doesn’t even scratch the surface of materials.”

Leona provides a purple folder of materials for each participant filled with information essential to preparing an end-of-life plan: advance directive, declaration of final disposition, information on wills, contact lists, financial information access, password access, death certificate, medical aid in dying (MAID), legacy work, obituaries, hospice, end-of-life doula offerings, living wakes, funerals, body disposition, and death cafés.

Some have suggested that she do away with the printed materials and direct attendees to online resources, but in her experience it’s important for folks to have the information readily at hand.

“…We live in such a death-phobic society, and nobody talks about this stuff. I come along and throw all this information at people. It’s overwhelming to begin with, but it’s also easy to be engaged with the topic and have good intentions to move forward with your end-of-life plan while you’re sitting in the room…but as soon as you go home, you lose the impetus… If you must go online and print all the documents, it’s easy to procrastinate. Whereas if you go home with the purple packet and it’s lying on your counter or someplace, and you see it, it’s easier to say to yourself, ‘I really should do that.’ So that’s the primary reason why I provide the printed material. That’s another non-negotiable for me: I think people need to walk away with information in their hands to motivate them to do the work.”

She also provides multiple flavors of delicious cake in the form of skulls, just one way she lightens the mood during the presentations.

A couple of people financially support Leona’s death education work, and she’s recently begun the application process for non-profit status. That will enable her to form an advisory board, apply for grants, seek tax-deductible donations, and perhaps eventually become a paid employee. But it’s a long road ahead and still very much a labor of love. She says, “I feel one thousand percent that this is what I am supposed to be doing.” She doesn’t know anyone else, especially in Maine, who is doing this work the way she is. Others give sporadic presentations on special topics, but she knows of no other comprehensive program. She’s always learning. When participants ask questions, she researches the answers and incorporates them into her program, which is, consequently, always evolving.

Leona has been extremely gratified by the response to her death education offerings.

“I have been so pleased with how much positive feedback I’ve gotten. I think people are really grateful and energized to learn they have more options than they thought. People get really engaged… It’s just been so positive, rewarding, and motivating. One woman—I love this story—raised her hand and said, ‘Why don’t we know this stuff?’”

I asked Leona if she thought some of her success could be chalked up to American society becoming more open and receptive to talking about death.

“That could be possible,” she opined. “I think COVID changed a lot of things for people. But I tend to think my approach also leads to success because I don’t tiptoe around it. I don’t use soft words; I just talk about it, and I’m upfront, and I try to bring levity to it.”

I also asked what age groups make up her audience. She says attendees tend to be on the older side, but she’s also had people in their twenties and even some teenagers.

“…when I do these programs, it’s an offering to everyone. It kind of drives me a little crazy when people want to bring me in only for an elder series. I’m fine with that, but in my head, this is for everybody. I think that the sooner you know this information, engage with your mortality, think about it, and prepare for it, the sooner you can put it aside and live your life in a freer, more meaningful way.”

Leona tries to avoid offering her personal views on death and mortality during her presentations. She sees herself as an information provider and a conversation facilitator. But there is one almost universal experience that she sometimes speaks about:

“I’ve seen it, and I’ve heard about it, consistently, the fact that people who are actively dying very often talk to or about people that have died before… And that’s consistent across cultures, religions, countries, and social groups. I’ve seen it over and over. There’s something to that, but I don’t know what it is. I’m not a religious person…I just feel that we’re made of energy, and that energy goes somewhere when we die. It brings me a lot of comfort, but I don’t know exactly what it means. So, long story short, I do not bring my own stuff to the conversation… I’m always intrigued to hear about what other people feel or think.”

What is most rewarding about this work? Leona says it’s twofold: one, getting the information into people’s hands, planting the seeds, letting them know about their options, and two, giving them tools for dealing with death at the bedside. She says,

“…if someone is bedside in a dying experience, they may remember things they can do to help the person that’s dying or themselves, to neutralize the fear of what’s happening…If you don’t know what to expect, it can look kind of scary, and it can seem like a terrible thing when it’s not.”

Of course, the overwhelmingly positive response to her program is also rewarding. “It’s all come together in a way that I never imagined. I’m doing the thing I really wanted to do.”

“What advice do you have for others interested in pursuing a career in death education?” I asked.

“There should be more of what I am doing. You can’t do it all by yourself. I don’t want a monopoly on it. I think the way I am doing it is kind of unique. Maine Death with Dignity does community presentations on medical aid in dying. There are obituary-writing workshops and legacy workshops, but I’m doing it all in one…People are so hungry for this information when it’s presented in a digestible way. I would love to see more of what I am doing.”

Talking with Leona, who is extremely well-informed about everything related to death and hungry to learn even more, was an exceedingly upbeat way to end my reflections on the Five Remembrances (see previous posts in this series). You could say she is passionate about death—well, really, about dying well and helping others make the decisions and take the actions that make that possible.

Building Trust with Respect

One of the people I have come to respect deeply over the last two years is Dr. Nirav Shah, head of Maine’s CDC (Centers for Disease Control.)

Almost weekly, since March 2020, he has held a press briefing on Maine Public Radio, taking questions off the cuff from media journalists in Maine in an attempt to keep the public informed about COVID. Frequently, Maine’s governor, Janet Mills, and its Commissioner of Health and Human Services, Jane Lambrew, have joined Dr. Shah on these broadcasts. Together they have answered questions, explained CDC guidelines and recommendations, and encouraged Maine’s citizens to do everything possible to stay safe during the COVID pandemic.

I have been impressed time and again by Dr. Shah’s communication skills and his command of COVID scientific findings and statistics. In my mind, he is the consummate communicator. He speaks lucidly, intelligently, respectfully, and empathetically. I have only once or twice heard him ruffled by not having information at his fingertips. Throughout the last nearly two years, he has never criticized or showed anger or frustration with those who refuse to follow mandates and guidelines, deny the seriousness of the pandemic, or continue to resist vaccination. He has the proverbial “patience of Job.”

On January 3, he demonstrated his genuine care, concern, and respect for the people of Maine by participating in a Maine Public Radio Broadcast—Maine Calling, hosted by Jennifer Rooks. (Maine CDC director Nirav Shah addresses questions about the pandemic, particularly about vaccine hesitancy) His purpose for this call-in program was to open a dialogue with those not vaccinated against COVID; his stated goal was to build trust. When I began listening to the broadcast, I was nervous that none of those opposed to vaccinations would call in, the ultimate slap in the face to trust-building. However, callers, emailers, and tweeters engaged with Dr. Shah for nearly an hour. Because he entered into an authentic dialogue with each one, asking genuinely curious questions about their views, assumptions, and situations, relatively few callers got on the air. Some were angry, afraid, and belligerent; others were open and curious.

While he acknowledged and lamented that vaccinations had become politicized, he avoided political debate or criticizing others who engage in such discussion. Instead, he stayed with the “facts”—the statistics, the scientific models, and studies. One could hear the sincere emotion in his voice as he spoke about Mainers who had died of COVID. He listened, expressed understanding, acknowledged agreement where he could. Though he didn’t say these words, I could imagine him thinking, “I can’t do anything to change the politics, nor can I force anyone to follow CDC guidance. All I can do is build trust and try to persuade.”

As the pandemic has unfolded, scientific information and best-practice recommendations have changed and developed repeatedly. As a result, early guidance was superseded by the findings of further studies. Dr. Shah acknowledged that the evolving nature of the scientific understanding of COVID has led to confusion and fed into mistrust of public officials and their recommendations. This broadcast, he said, was one attempt to rebuild trust. It was worth the try.

Such a genuine, careful, skilled effort at trust-building could only come from one who respects his fellow Mainers. Dr. Shah demonstrates that he believes each of us wants to do the right thing. Therefore, he is willing to invest the time to understand the convictions of others and is hopeful that offering his best knowledge and sincere concern will make a difference.

I encourage you to listen to the podcast at the link above. Some have heard me say that I wish Nirav Shah would run for President of the United States. I am saying that I want all politicians and public servants to demonstrate the respect that he does for the people they serve.

Final Burst! 2021 Wrap-up

Near the beginning of 2021, I began a series of articles under the theme of “Brief Bursts.” My goal was to be less wordy—to say things as briefly and directly as possible—and therefore post more frequently. Unfortunately, as you can see from the shortlist of articles under this sub-heading AND the length of several, I did not accomplish either goal.

In the previous twelve months, many of my posts have appeared under comments to the first article, “Deep Listening.” There, I’ve engaged in an enlightening conversation with my conservative friend Ryan about a wide range of topics, including politics, leadership, and, recently, attitudes toward vaccinations and COVID.  I encourage you to read these comments if your interest is piqued by an exchange between a bleeding-heart Democrat (me) and a conservative Republican (Ryan.) It is not a coincidence that this conversation appears in a blog about respect.

Where With All Due Respect is headed in 2022 is still a mystery. I’m currently preoccupied with writing my first novel and find myself wanting to dedicate most of my creative and wordsmithing time and energy to that. Approaching the sixth anniversary of my retirement, I see the rhythms of my daily life coalescing more and more around the act of writing—my way of being in the world, my orientation toward life.  Whenever I put pen to paper or fingertips to keyboard—journaling in the early morning hours, email during the day, scant hours writing fiction, essays, and the occasional poem, or short phrases jotted in my “brain-dump” notebook just before sleep—choosing the precise word is a passion bordering on obsession.

Yesterday, the best-selling writer Joan Didion died at the age of eighty-seven. An NPR report (Joan Didion has died at 87: NPR) declared that

Didion spoke about the act of writing more astutely than pretty much anybody else. “I write entirely to find out what is on my mind, what I’m thinking,” she said.

“The writing itself was a path to understanding and clarification. Her definition of a writer was ‘a person whose most absorbed and passionate hours are spent arranging words on pieces of paper.’ She said that in a 1976 speech at her alma mater, the University of California, Berkeley.”

For me, those passionate hours are spent arranging and re-arranging words on a computer screen. And a total of ­­­­ 39 journals over 50 years betrays my compulsion for writing as inner exploration.

Thank you to those who read With All Due Respect and offer your comments and encouragement.  Thank you to fellow bloggers who inspire me, including three with different styles and perspectives: Carolyn, Rick, and Joan. I’m grateful to my two writers’ groups: the spiritual writers (Al, Ann, Carol, Hugh, Nancy, Paige, Rick, and Sarah) and the group from my retirement community (Deanna, Fayal, Marcia, Mark, Nan, Phyllis, and Terry).  They have patiently read and critiqued my monthly submissions for over three years, and I’ve become a better writer with their kind guidance. Finally, though it may seem odd, I want to put in a plug for Grammarly, the editing app that I use daily for everything from email to chapters in my book. It’s improved my grammar tremendously and saved me from some dreadful faux pas.

Writing is what I most love to do. Paradoxically, the tragic circumstances of the pandemic have provided more opportunity to do it than my busy nature would have eked out on its own. So, whatever becomes of With All Due Respect in 2021, I will enjoy every minute of it.

Creeping Normalcy…in a retirement community

I have not posted to the series “Diary From a Social Distance” in many months. The novelty, even of a pandemic, and the insights it might offer each of us, have gradually faded into the background of daily life, no matter how restricted. I offer this poem, written over the course of the summer and early fall, as a final post in this series. An historic US election will take place in less than a month and, regardless of the result, will, perhaps, give birth to a new series of posts under the umbrella of “respect.”

Creeping Normalcy

Normalcy is creeping back into our lives.

It is hard to resist.

All my resolutions to live

By the lessons learned during

These past months of pandemic,

Are donning fresh feathers and

Getting ready to fly out the window.

Sick of “social distancing” guidelines,

An impromptu cocktail hour

Has sprung up on the patio.

Technically, chairs should be

Six feet apart and masks should be donned,

But even without a tape measure, I can

See that the chairs are nudging closer.

And masks are dangling from one ear

Or bundled beneath the chin.

A nose peeps out, to catch a breath

Or lips to speak a word unmuffled by a covering.

Others have dispensed with masks all together.

After all, how can you consume a cocktail

With your lips held prisoner by a mask?

The staff, hoping I suppose to set good examples,

Wear their masks avidly and sit at great distances

For their lunch breaks on the patio.

At the beginning of this long ordeal,

When I would step outside my door in early morn,

To begin my daily round,

I would be shocked by the quiet – the absence

Of traffic humming in the distance.

Now, not only do I hear it at

Rush hour, but when I drive to some “essential” errand

I notice a “normal” number of cars on the road. 

In pandemic’s early months, the streets were quite deserted.

Though I have not dined in a restaurant,

But only ordered take out,

Or shopped in any store,

Except a pharmacy or a supermarket,

I felt emboldened by the warm weather

To meet friends outdoors and walk

Among the budding trees,

Six feet apart, of course,

En-masked for sure.

Now that nearly seven months have passed,

And we are reminded frequently that not one single

COVID case has plagued our retiree sheltered lives,

We feel a sense of invulnerability.

We think, why not eat inside at the “Dolphin”

Shop with crowds at Walmart,

Go to church, a wedding, or a funeral.

Let those who live in congregate housing

And those who live in cottages co-mingle, we implore,

To do jumping jacks and yoga,

Play bridge and ping pong,

Meditate and talk!

But no, the risk is still too great

Until we vaccinate.

The prime concern as winter comes,

And holidays are round the bend

Is contact with our families.

We’ve seen them “en plein air,”

So to speak, in summer months.

Cold gradually prevents that luxury now.

The staff is searching for a way

For us to see those we love in cold and snow.

A special room, a special shield,

Hygienic cleansing, no touching please!

Enormous effort, expensive too.

Reminding some of TV scenes

Of prisoners on either side of

Touch-proof glass

With hands outstretched, and eyes engaged.

What seems acceptable and normal now

A year ago

Would have been unthinkable.

This normalcy has crept upon us

Each day, each week, each month.

So now, the temptation is oh-so-keen

To abandon caution,

Let down our guard.

But no! En garde! My friends.

A little more patience and sacrifice

Is required of us still.

Our strength and ingenuity will help us

In this battle against virus and the flu.

Get your shot, wash your hands,

Wear your mask, stay six feet apart.

We will prevail!

And though the virus spreads and kills,

We’ll do our part on our small front

To end this Plague, and stem this Tide

Of loss and grief,

Inhumanity, and vicious Pride.

Moriah Freeman

October 10, 2020