On Getting Through the Worst Day

JUST WHEN YOU THINK YOU’VE HIT BOTTOM, HANDS REACH DOWN TO PULL YOU UP

Photo by Jametlene Reskp on Unsplash

My beloved friend Bob left the planet recently.

It was time. He was done with all this. We have a good law, the California End of Life Option Act, that offers the choice of Medical Aid in Dying if one is a mentally competent, terminally ill adult. So after many years of battling cancer — most of them wonderfully good and productive years — he didn’t so much surrender as choose to leave the battlefield. We should all have the grace, and the good fortune, to make such a choice.

Still.

A few days earlier he’d called to say goodbye. I declined; we settled on See you around. Then on that morning after I awoke to an email of two hearts in my inbox from him; another two, later, from his wife. (Though he and I had loved each other deeply for years, she understood. I’m pretty sure I was not even close to being his only extra-marital beloved.)

I had gone to bed that night before, after sending off my own hearts, with a heavy one of my own. The hearts in the inbox helped, but the heaviness was slow to lift; loss takes its own time to wear itself down. As Anna Quindlen concludes in her poem “Old Friends” — which also references earthquakes and tsunamis and terrorist attacks — “Catastrophe is numerical. Loss is singular, one beloved at a time.” So I poured a cup of coffee, thought sorrowfully and fondly of his family, and wondered how any of us would get through the day.

And then these things happened:

A new photo of my one-month-old great-granddaughter popped up in a family text stream. Her father, my grandson, is shampooing her hair.

A neighbor of Bob’s — who knew him only casually but knew of our friendship and his illness — sent an email saying she and her husband were walking by his house this morning and thinking of how often they enjoyed the lovely music coming from his piano. She hoped things were okay and just wanted to send a note.

My daughter-in-law called to fill me in on family lives, and discuss some technological issues she has offered to help me with. If dealing with technology won’t take your mind off your sorrows (and/or replace them all with rage and frustration) nothing will.

A neighbor in my building sent a text saying how much he was enjoying the new flower arrangement outside my door. As it happened, the flowers in my building’s lobby were to be replaced in the morning,

New arrangement of aging flowers (Author photo)

so it was legal to snatch a few (the white ones, dahlias perhaps?) late last night. I poked them into a vase with some hydrangeas brought by dinner guests two weeks ago. Who needs new flowers, when aging ones bring community joy?

A political activist friend emailed an invitation to a fundraiser for some national candidates I greatly admire. She knew I couldn’t afford the big bucks initially advertised, but a few cut-rate tickets had quietly been made available. (Or so she said.) Maybe these folks aren’t as big a draw as we’d hope? — at least it meant getting to meet and greet a few heroes, and in lively, fancy company!

Some old Substacks and Medium posts generated thoughtful comments, some of them funny, all bringing just a tiny fragment of someone else’s soul.

At lunch I visited with a group of old friends; we talked causes and politics and trivia. After dinner, another old friend came for a visit and to use my shower, because she has no hot water. Life in senior living facilities does not always run smoothly. But her trouble was my gain.

In my reading pile are several unfinished New Yorker’s and Atlantics, Ann Patchett’s new Whistler and (audiobook version) The Odyssey. Miss Mabel K. Whiteside, who taught me Greek 101 an antiquity ago, would be proud.

Just another day on planet earth. Minus the physical presence but not the living spirit of one treasured soul, and still peopled with others — 

Each one reaching down a hand of friendship.

Taking My Husband’s Ashes Home

A PERILOUS, NOSTALGIC, OCCASIONALLY HILARIOUS JOURNEY TO CORNWALL

“Tinners’ Way” near Penzance, Cornwall (Author photo)

It is entirely legal to take someone’s ashes (“cremains,” in creepy cremation society lingo) from the U.S. to the U.K. All you need are a death certificate and a letter from the cremation people — details that had not occurred to me until I was leaving for the airport.

Oh, well.

(I am not sure what laws I recently broke, or what the statute of limitations for sending me off into London Tower may be, so let’s just keep this story between us friends. Including any TSA people or customs agents who may be reading along.)

A piece of my husband’s San Francisco soul was always in Cornwall. Generations of ancestors walked those ancient pathways in the pre-dawn darkness, headed deep underground into the mines that, long abandoned now, still dot the landscape.

So it’s been in the back of my mind, ever since my good husband Bud died in 2019, to take some of his ashes back to The Fatherland. And thus it was that I found myself landing at London’s Heathrow Airport with two small vials of his earthly remains plus a quart-size baggie, triple-baggie’d just to be safe, with more. And no requisite documentation. It was not that I don’t still have multiple copies of the death certificate, or that I couldn’t have found the name of those cremation people we signed up with several decades ago if it had occurred to me. It had just not occurred, and this was an inconvenient time to run back to the apartment and get things.

An extremely polite customs man motioned me aside, as my carry-on emerged from the scanner. It was then that I first realized — since I wasn’t smuggling any controlled substances or sneaking California produce into the country — that Bud’s ashes were at risk of remaining at Heathrow Airport forever, rather than scattered on hallowed Cornish fields. Any doubts about this possibility were erased when the young man gently lifted the baggie from its comfortable space and laid it on the table. Wordlessly, he began to run a small scanner back and forth across it.

Never say I can’t think on my feet, even after they’ve just gone through the airport scanner. I thought: Hmmm. He wasn’t at all concerned with the vials. As it happened, I’d found little 4-oz clear plastic tubes somewhere in an assortment of never-used beauty containers, so they bore labels that said “Skin cleanser” and “Conditioner.” The customs agent, now having pulled out an even more serious-looking scanner, was carefully running it back and forth, occasionally looking up with a pleasant expression.

I said something offhand about ashes used in facial cleaning. He said something, still with a pleasant expression, about “having to be certain about inorganic material.” (Inorganic? One’s mortal ashes?) To be honest (now, at least,) I think both of us still had questions. But he just carefully placed the baggies back where they had been and closed my suitcase. I was on my way, all ashes with me.

The person who would enjoy this story most of anyone I know is my late husband. I choose to believe he is, in some inorganic state, enjoying it on some celestial cloud.

Low tide at the harbor, St Ives (Author photo)

I met my daughter Sandy at Heathrow and we splurged on a driver to travel the utterly gorgeous countryside that Bud and I had enjoyed together so many times. Without that excellent assistant (Thanks, Sabir!) there is no way we would have found our AirB&B cottage above the harbor in St Ives, nestled among other cottages and shops in the labyrinth of steep, winding cobblestone alleys of this charming fishing village — where I had always stayed with Bud, who knew his way around. I did not; I still do not.

We spent a day or two readjusting our inner time clocks and enjoying St Ives, Cornwall. It was then time for the first half of the mission: spreading a few ashes in the sculpture garden of the English artist Dame Barbara Hepworth, who lived and worked in St Ives from the beginning of World War II until her death — in a fire in her studio in 1975.

The Hepworth Museum and sculpture garden are a quick walk from the Tate St Ives Museum, one of my favorite museums in the United Kingdom. They adjoin her former studio, now preserved and feeling as if she just left for a spot of afternoon tea.

I managed to get myself into the mirror in the framed collage (Author photo)

Hepworth moved to St Ives in 1939 with her husband, the painter and sculptor Ben Nicholson (and their 5-year-old triplets, two sons and a daughter,) and lived there until her death in an accidental fire in the studio in 1975. Their story, and the stories of other artists who flourished in that time and place, are fascinating. As is the adjacent sculpture garden serene in its surrounding lush greenery, which was a haven for Bud and me.

But do the present-day managers of it all welcome scatterers of ashes? We thought it unwise to ask. So, after making sure no other visitors were nearby and giving thanks that the winds had subsided, we each quietly emptied a vial behind a Hepworth sculpture. It felt right.

Sandy after finishing her scattering task (Author photo)

The next day it was on to find the right spot for the final resting place of the rest of Bud’s ashes, grateful that it had not been Heathrow Airport after all.

We found another intrepid driver (ask for Barry) to tour us around the countryside, and specifically to get us to a remote area of the Tinners’ Way — a 16-mile stretch of pathway along the coast where generations of miners walked on their way to work. Bud and I covered much of it, a few miles at a time, on visits to Cornwall.

Again, as informed, agreeable and charming as we found Cornish-native Barry to be, we thought that trying to explain the ashes mission was a story too far. Having made it through customs, I also didn’t want to risk losing my precious cargo to HRH Charles III’s National Trust, which maintains the landscape. So we just said we wanted to do a walk of a mile or so, at some remote point.

Along the Tinners’ Way, Cornwall (Author photo)

There are plenty of remote points along the Tinners’ Way. We found one (above) that seemed right.

And there, in the tall grasses and the rocky soil of Cornwall, lie a few of the mortal remains of this last generation of Johns’. May they rest in peace.

Mission accomplished.

Aging into the Zero Percentile

THIS IS HOW IT FEELS TO BE THE OLDEST PERSON ALIVE??

Photo by Harli Marten on Unsplash

It is right there on the website: 100% of the people in the world are younger than I am; 0% are older. The French Institute for Demographic Studies told me this. I found it more than a little disconcerting. But could I argue with INED, a public research institute specializing in population studies, working in partnership with national and international academic and research communities? 

One teeny reassurance was in the minuscule black tip of the still-alive-and-kicking graph of the world’s population. It looked like there had to be a few remaining others this old. That, plus the fact that I do have an actual friend or two still very much alive in their later 90s. 

So I clicked myself over to percentages for the U.S. and lo! the numbers looked a little better: 1% of the people in the U.S. are older, even, than I am. Whew. Do we care if 99% are younger? Nahh, we one-percenters are happy to occupy that tip of the iceberg. At least we, and it, are still clinging to the precipice.

All this came about thanks to my fellow WordPress blogger Neil, who grouses more about being old at 77 than I think should be permissible. 

“My status as an ancient has been made crystal clear to me,” Neil wrote, referring to INED’s revelation that 97% of the world’s population is younger than he is. He should grouse? He even admits to being “still nicely functional, still pretty much an ace at stumbling gracefully through life.”

Which brings us back to the whole demographic study business. At no point are the trends going to reverse. However more (or fewer) babies appear in any given 24-hour span, except for those who leave the planet for the hereafter, every one of the rest of us is another day older. 

Perhaps the only answer is to ignore wherever we are on the percentage scale and focus on the 24 hours. Aim to do the right things, Neil suggests. Seek justice. Do a little good somewhere. Love your neighbor. 

Smile when the sun goes down; it’ll come up tomorrow, whether you and i do . . . or not.

The Good Death: A Demonstration

SHE MODELED, FOR THE LIVING, HOW TO DIE WELL

Photo by Rafael Hoyos Weht on Unsplash

I’ve just finished an obituary of sorts for my friend Laurie, who died yesterday afternoon, slipping quietly into an ever-deeper sleep with those she loved best beside her. We should all, eventually, be so lucky.

The way you know you’re dead, in today’s senior living communities, is that your picture goes up on the hall table. Laurie and I laughed about that just last week, when I was saying I’d work hard at writing something elegant to go beside her photo. From somewhere in the ethersphere I am certain she’s getting the last laugh.

Elegance was easy to come by in this case. A decade ago Laurie had shepherded her physician husband through a descent into dementia, managing to keep him at home in their apartment until his own relatively gentle demise. They had raised two daughters and led a full, good life.

One daughter was extremely close to her mother, as was her wife, a particularly beloved daughter-in-law to Laurie.

So the first thing they did, en route to the Good Death, was to talk frankly and in detail about what exactly Laurie wanted. At 91 — precisely the age of this writer — Laurie enjoyed being with friends and family, walking her San Francisco neighborhood, reading and listening to music. She could still do most of these, but recent illnesses were imposing limitations. 

We talked, occasionally, of how she felt her quality of life had diminished. Because of my volunteer work with Medical Aid in Dying, which is legal in our state (and 9 others plus DC,) we talked a good bit about that option — which she said she would choose over any painful & debilitating end. 

A few weeks ago an intestinal issue sent Laurie to the hospital. Surgery would be required, the doctors said; and it would be a high-risk procedure.

No thanks, said Laurie, I think I’d rather go home to die in peace.

Which was exactly what she did. With a hospice bed positioned so she could look out at the distant mountains, a TV set she mostly kept turned off and flowers on the windowsills, she made herself comfortable. There was morphine for pain, but she had almost none.

There’s a name for this way to die: Voluntary Stopping Eating and Drinking (VSED.) The intestinal issue had spelled the end of her eating; stopping drink hastens the process. A popsicle-like swab was by her side to prevent any discomfort from thirst.

For a week, friends stopped by. We’d tell her how much she had meant to us; she’d return the sentiment — but nothing faux or flowery: “We really didn’t know each other that well,” she said to one visitor. “But I remember a funny thing you said not long ago . . .” 

Sometimes, as the days wore on, she would fall asleep mid-sentence. Nobody cared. 

Ten days after her return from the hospital Laurie’s sleep simply deepened and her heart and breathing stopped. Her two beloved daughters were holding her hands.

Birthdays, in the 90s, Come & Go

YOU’RE INVITED TO MY CELEBRATION

This marks the official end of my 90th birthday celebration. Please help me celebrate #91.

All I want for my birthday is for EVERYONE in the State of California to know of the legal right to Medical Aid in Dying. Easy peasy present for you to give me and everyone you know and love in California! (And/or 10 other states, more on that below.)

SUCH A CRITICAL HUMAN RIGHT, AND WE DON’T KNOW WE HAVE IT?

Before the California End of Life Option Act took effect, on June 9, 2016 (another birthday to celebrate!) I spent a good 5 or 10 years of my life working to make it happen. Pulling on yellow T-shirts, roaming around Sacramento, the whole activist thing. Gov Jerry Brown signed it into law, said he “couldn’t deny (Californians) the right.”

AT LEAST EVERYBODY SHOULD KNOW WE HAVE THIS RIGHT, RIGHT? A mere 25% of the good citizens of California even know such a right exists. Please help change that statistic.

My favorite California nonprofit, End of Life Choices CA, helps people know & understand all of their legal end-of-life options. (Among a LOT of other good works.) Other states, in addition to Washington DC, where MAiD is legal are Maine, New Jersey, Vermont, New Mexico, Montana, Colorado, Oregon, Washington, California, and Hawaii. Maybe you want to help some of them know their rights!

Meanwhile, for my birthday this year, please visit our website, send the link to a friend or two (or 3 or 4,) post a note about the CA End of Life Option Act on Instagram. Facebook. X or whatever it is now. Tik Tok if you’re that savvy. Spread the good word is all I’m asking.. . but you’re welcome to Like our  FaceBook Page, Join our Volunteer Team, Invite us to speak to a community group or donate. Donations are always welcome, even when it’s not my birthday.

Losing – But Not Mourning For – My Sister

Photo by Tim Mossholder on Unsplash

Several weeks ago I lost the last of my three older sisters. Condolences are still coming in almost every day via calls and notes and emails. In response I’ve often explained that while I’m feeling extraordinarily sorry for myself — much of my lifelong identity has been as the youngest of four: The Moreland Girls — I do not grieve for my sister Helen.

Helen, I am quick to say, was greatly beloved. By her four children and twelve grandchildren, by a host of friends and other relatives, and very particularly by me. I was her Franciscavichy; she was my Helenchen. Though we’ve been geographically separated for most of our adult lives by thousands of miles, we wrote (yes, old-fashioned notes and letters) and emailed often, and spoke on the phone at least every few weeks. A visit to her western New York retirement community home during the pandemic break of 2021 and again in the fall of 2022 were highlights of those years.

I just don’t mourn for Helen.

The Moreland Girls circa 1940s, bookended by Helen and me (Author photo)

Some years ago, not long after the death of her husband, Helen began to talk about how she didn’t want to “linger.” Her husband had lingered.

When he was diagnosed with Parkinson’s in his late 60s they called to say they were going out to celebrate. He had suspected dementia, she’d thought he might have a brain tumor, and they both believed Parkinson’s a far better affliction.

His physician had said my brother-in-law could expect to have “10 good years,” and they said with one voice, “We’ll take it!”

What nobody talked with them about was how many bad years he would have, and how bad they would get. My brilliant, witty, gregarious brother-in-law had spent his life in academia but spent his last years in hell, slowly losing his mobility, his speech and eventually all physical or cognitive function.

I knew exactly what Helen meant when she spoke of not wanting to linger.

More recently she took to saying things like, “This isn’t living.” Life, for her as well as for the two of them during their long and eventful marriage, meant going to dinners and lectures and events with other bright minds, singing in the Boston community chorus they founded, attending concerts and operas and plays.

I often quipped with Helen that she might consider taking up prayer — she was a determined atheist — so she could pray when she went to bed that she wouldn’t wake up. Instead, she simply wished it.

Photo by Sunguk Kim on Unsplash

Once, after feeling bad all day, she was so certain of this likely happenstance that she left a long message on my answering machine about what a wonderful little sister I’d always been; she wanted to let me know that in case she didn’t wake up. (A lovely message to have now forever.)

Over decades of working as a volunteer with hospice, an AIDS support group in the 1990s and currently End of Life Choices CA, I’ve seen some tragically bad deaths, and more than a few you’d call Good Deaths: peacefully in one’s own bed, surrounded by loved ones.

Helen finally got the good death she wished for. Her physician daughter came over to rub her back when she went to bed, after a day of feeling generally low. The next day she didn’t wake up.

Helen was 95. We should all sign up for this: resting in peace like my Helenchen.

# # #

FOR SOME EXCELLENT HELP WITH MAKING YOUR OWN END-OF-LIFE WISHES KNOWN, SEE THE RESOURCES TAB AT WWW.END0FLIFECHOICESCA.ORG (EVEN IF YOU DON’T LIVE IN CA!)

Two Reviews: Two Fine Books on Life’s End

Anita Hannig’s “The Day I Die” and Amy Bloom’s “In Love”

Photo by FORMAT arw on Unsplash

(The following appeared first as a blog for End of Life Choices California, an excellent nonprofit on whose board I’m proud to serve. It’s reprinted with pleasure, especially after Hannig told me that our blog resulted in more visits to her website than did her interview with Diane Rehm; I love being mentioned in the same sentence with Diane Rehm.)

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on Medical Aid in Dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices CA.

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

*****

Amy Bloom’s In Love is a book for anyone facing Alzheimer’s, anyone who knows someone with Alzheimer’s – or  anyone who’s ever been in love.

It is, despite the somber underlying theme, a love story.

Bloom writes unblinkingly of her husband’s decision to end his life before Alzheimer’s can pull him into years of oblivion, and her own decision to support him in this quest. 

In just the first few pages it’s easy for the reader also to fall in love with Brian Ameche. Bloom writes with warmth and honesty about their love affair, begun while each was committed to someone else and eventually legitimized into a more or less conventional marriage. The handsome Italian architect/ex-Yale football player from a sprawling Catholic family and the celebrated Jewish writer/ teacher/ psychotherapist who share, at least, a dedicated atheism, create a life together bursting with joy. Until his diagnosis.

Brian, who has probably had Alzheimer’s for a few years, finally exhibits enough symptoms – confusion, forgetfulness, erratic behavior – that it can’t be ignored. And he is immediately, defiantly certain that he wants to end his life while he has the wits to do so.

In the U.S., there’s no legal, nonviolent way to accomplish this goal. Even in the 11 states or jurisdictions where Medical Aid in Dying is legal, one has to have a terminal diagnosis and be mentally competent; Alzheimer’s is a disqualifier. 

Ameche and Bloom finally settle on Dignitas, a Swiss nonprofit that helps people with terminal illness – including Alzheimer’s – end their lives peacefully. But Dignitas, in addition to the costs of getting to Zurich, has its own strict regulations: certifications of Ameche’s diagnosis, medical information and proof that he’s not just depressed, time-consuming hoops that must be jumped through. The couple set about making it happen, while keeping their plans from all but a necessary few. Toward the end they accomplish the final details – notes to friends and relatives that will be delivered after Ameche’s death, discussions about his wishes, plans for a few celebratory days in Zurich – which do include a celebratory moment or two – and for a friend to be there to fly home afterward with Bloom.

Bloom skillfully weaves glimpses of their romance and marriage, the good and the bad, into the story of their struggle to meet Dignitas qualifications and complete the journey. It’s a remarkable journey, remarkably well told.

(For anyone addicted to audio books, as this writer increasingly is, this one is a special treat: Bloom reads her own words. It’s as if she were telling the reader the tale.) 

Dying in Pain – or Comfort?

Photo by Sharon McCutcheon on Unsplash

This essay appears on the blog page of End of Life Choices CA, a nonprofit which I am proud to serve as a volunteer and board member. Perhaps you’ll visit the site, or at least find a little food for thought here.

When is being comfortable and pain-free not a good idea? Most of us would say never. As we humans approach life’s end, though, that question can get trickier. Or at least more complex.

 A recent court case stirred renewed discussion of end-of-life care, specifically comfort care and pain control.

Dr. William Husel, a physician with Columbus, Ohio-based Mount Carmel Health System, was accused of killing 14 patients between 2014 and 2018 by administering excessive doses of fentanyl, a powerful opioid which has become a common, and very dangerous, street drug. Prosecutors argued that he had committed murder; the defense argued that he was providing comfort and the patients – all were in intensive care units – died of their underlying disease. Dr. Husel was found not guilty on all counts in April, 2022. 

The controversy spread throughout the Mount Carmel Health System, eventually leading to the resignation of the chief executive and the firing of more than 20 employees. Dr. Husel, though acquitted of all charges, later voluntarily surrendered his medical license. But renewed discussion of end-of-life care can only be seen as a plus. All of us will face life’s end; not all of us will have given thought to what we want that end to look like. Or what choices, including pain management, we might make.

Photo by Stefan Kunze on Unsplash

“It sometimes happens that families and even caregivers are not familiar with comfort care,” says End Of Life Choices CA Board Vice President Robert V. Brody MD. This can include end-of-life care, “where the direction switches from curing disease to keeping the patient comfortable (and) can be misinterpreted as hastening death when in fact the medical literature says that keeping people at peace actually prolongs their life.” A primary care, hospice and palliative care, and pain management physician, Dr. Brody is Clinical Professor of Medicine and Family & Community Medicine at the University of CA San Francisco. He is also a leading spokesman on matters of medical ethics in the U.S. and abroad. “Dying people often need high doses of opioids to manage pain,” he observes. “This is done in an entirely beneficent way, and in no way is it meant to cause harm. Those not directly involved may misinterpret these efforts.”

As the currently popular meme goes, “It’s complicated.” This was shown in the Husel/Mount Carmel case, and countless other instances since the meme appeared years ago. While opioids are highly addictive, and one of the leading causes of death among Americans under 55, they are widely used in treating dying patients. Most of us would welcome them, if appropriate, as we are dying.

Comfort is a happy state at any age.

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