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October 11, 2016October 7, 2021

Vin Scully Leaves Us With a Smile

What’s not to love about Vin Scully?

Born and raised in the Bronx, where he delivered beer and mail, pushed garment racks, and cleaned silver in the basement of the Pennsylvania Hotel in New York City. Lost his first wife – of 15 years – to an accidental medical overdose. A year or so later, married Sandra, to whom he remains married 40+ years later. At the age of 8 – this would’ve been in 1935 – he decided he wanted to be a sports broadcaster. And in 67 seasons of broadcasting Dodgers baseball games he has accumulated a long list of awards – without ever being profane, boorish, self-serving or fodder for the scandal mills.

This writer cannot claim to be any reputable sort of baseball fan. But admirable public figures are in short enough supply that one has to be grateful for Vin Scully.

Giants fans loved having Scully wind up his illustrious career in San Francisco recently, in a stadium with more “Thank You Vin!” signs than orange rally flags. Several signs in the stands read “This Once We’ll Be Blue” – in honor of Scully’s beloved Dodgers. (The Giants went on to win the game.) But it was up to the New York Times to publish the entire transcript of his narration of the top of the ninth inning – his final words to the listening baseball public, headlined Vin Scully’s Final Call: I Have Said Enough for a Lifetime. Enough to include a few nuggets in between the calls (“And the strike . . .”)

“There was another great line that a great sportswriter wrote, oh, way back in the twenties,” Scully ruminated on air. “A. J. Liebling. And it said, ‘The world isn’t going backward, if you can just stay young enough to remember what it was like when you were really young.’ How about that one?

“Ground ball foul. 0 and 2 the count to Yasiel Puig . . .” And later –

“That was awfully nice. The umpire just stood up and said goodbye, as I am saying goodbye. Seven runs, sixteen hits for the winning Giants, 1-4-1 for the Dodgers. …I have said enough for a lifetime, and for the last time, I wish you all a very pleasant good afternoon.”

It was an elegant departure for a good man, ending a long and distinguished career. But this writer’s favorite snippet, among all the short tales and one-liners that wound through the reportage, was this:

“I’ve always thought it was attributed to Dr. Seuss, but apparently not. It’s still a good line, and it’s one certainly I’ve been holding onto for, oh, I think most of the year. … ‘Don’t be sad that it’s over. Smile because it happened.’”

What a treat to have something – someone – to smile about on the national stage today.

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September 21, 2016October 20, 2021

Loss, Love and Loyalty

by Fran Johns

Several decades ago a close friend of mine lost her only son in a senseless, tragic accident. He was in his late teens, on his motorcycle, on his way to work at a part-time Christmas season job. All of which added to the unspeakable sadness: a promising life cut short amidst the merriment of a season of joy.

Her friends gathered around to do what we could. We brought food, made lists of callers, tried to keep track of daily needs. My friend’s daughter, a best friend of my own daughter, suddenly found herself the middle child of three girls, all bereft of the one brother they had so loved.

In the large, shifting, changing, sorrowing group of those who came to the house were a number of young men also in their late teens who had been friends of the one now gone from their midst. They said to the bereaved parents, “We’ll always be here for you. We’ll always remember Mark, and represent him in your lives.” The kind of thing people often say at such times.

These were teenagers. Ordinary kids starting out in life – who had been in their own share of ordinary teenage mischief. In the ensuing years they had their own share of ups and downs. But as it turned out, they were true to their word. They were there for Mark’s parents at Christmas and New Year’s, graduations he would have shared, special times he would have been a part of.

Time passed, Mark’s friends matured as his parents (and this writer) aged.

Recently, Mark’s father died. I happened to be back in town at the time – though like many of those young people I had gone on to life elsewhere – and was happy to be able to be with my old friend and her daughters at his memorial service. It was a bittersweet time: he had lived a full and honorable life; old friends had come to celebrate that life and talk of the good times we had shared. My daughter, still best friends with Mark’s sister although they live on opposite coasts, was there with me.

As I looked around the gathering after the service I slowly began to recognize middle-aged men I had known all those years ago. Several had married women I recognized — also from all those years ago. They were now telling stories of their own children who are starting college or launching their own new lives. They were Mark’s representatives. The stand-ins for their long-ago friend whose memory they would not let die, whose presence they would certify to the mother who lost him so long ago.

How to make sense of it all, young life cut short, long life come full circle? How, indeed, to make sense of life and death and loss and continuity?

Mark’s friends, I think, help answer those questions. Out of loss and tragedy come love and loyalty. Out of singular death comes communal life. Out of anguished sadness comes humanity. We all come and go, but we’re all in it together. For a few years or a few decades – but together.

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September 14, 2016October 7, 2021

Caregiving and the fight-flight-freeze response

by Fran Johns

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-hearts infants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.

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March 24, 2016October 7, 2021

Looking Globally at Death – & Life

by Fran Johns

Buda-conf.5 In Japan the shift from Buddhism to secularism is complicating life and death. Ireland has launched a nationwide effort to encourage end-of-life planning. A Celtic Storyteller now based in Canada draws on her training as a nurse in helping people through illness and grieving. And at the University for the Creative Arts in Farnham, UK, one researcher/textile artist explores the intricate usefulness of cloth in the mourning process.

These were a few of the insights into end-of-life issues around the world shared at a recent Inter-Disciplinary.Net global conference in Budapest, Care, Loss and the End of Life. The conference provided a perfect excuse – once the abstract for my own paper was accepted – for this writer to take off several weeks for a memorable trip to Paris, Cologne and (eventually!) Budapest. The latter two ancient and wonder-filled cities I had never visited. More on travels later. This essay is a severely abbreviated commentary on a remarkable event, and explanation of the absence of any other commentary in this space over recent weeks. (The digital world does seem to have kept right on turning without my assistance.)

Inter-Disciplinary.Net was founded in the late 1990s by Dr. Rob Fisher, who gave up a tenured position at Oxford (not something many people would be inclined to do) to devote his entire and considerable energies to bolstering the “interaction of ideas, research and points of view that bear on a wide range of issues of concern and interest in the contemporary world.” The recent conference was the second global Inter-Disciplinary.Net event this writer has been privileged to attend, and they seem just to get better. As with more than a decade of conferences on end-of-life (and several other) issues, Care, Loss & the End of Life was organized and run by Nate Hinerman, PhD, Dean of Undergraduate Programs at Golden Gate University in San Francisco. The following brief glimpses into end-of-life matters in other countries are summarized from three out of nearly two dozen presentations.

ancestor altar

Tomofumi Oka of Sophia University in Tokyo spoke on “Making Peace with Grief Through Indigenous Wisdom: A Case Study of Japanese Family Survivors of Suicide.” Oka illustrated his presentation with clips from Japanese films (thankfully with English subtitles) showing several Buddhist altars to departed relatives. The tradition of ancestor worship that has for generations been part of Japanese culture, Oka maintains, was helpful both in confronting death and in dealing with grief. As the country has become increasingly secular, though, the business of helping survivors through the grieving process has been turned over to nonprofits that are largely funded by the government – and Oka is dismissive of their usefulness. “You join a group of other survivors, talk about your loved ones for a while until you are ‘graduated’ into another course in which you’re supposed to get on with your life,” he told me. “The nonprofits don’t know what they’re doing, and the system just doesn’t work.” Japanese Buddhists seem to have it better.

One of the most moving presentations was titled “The Materialisation of Loss in Cloth,” given by Beverly Ayling-Smith. An award-winning textile artist and researcher, Ayling-Smith illustrated her presentation with images of burial cloths and related textiles, including some elegantly ethereal images of shrouds. “Cloth has its own language as curator Julia Curtis has written,” she comments, “‘. . . fold, drape, stretch, stain and tear – it signifies an emotional range from intimacy, comfort and protection, to more disquieting states of restriction fragility, loss and impermanence.’ It is this range that allows cloth to be used as a holder of memories of events, experiences and people.”

This storyteller bonded early in the conference with Celtic Storyteller Mary Gavan, whose mastery of the oral form is both challenge and inspiration to a practitioner of the written form. Gavan grew up “as a Celtic storyteller tramp,” delighting in the ancient tradition as she heard it from grandparents and friends across Scotland and Ireland. Her presentation was told as story from her two personal perspectives: community palliative care nurse and Celtic Storyteller. It served as a vivid demonstration of how effective the well-told story can be in communicating and understanding the complex emotions brought to bear at the end of life.

Buda-conf.3

There were many more: perspectives on loss and grief offered by participants from Turkey, Spain, Norway, Slovakia and elsewhere, and one mesmerizing – if not for the squeamish – illustrated discussion of an anonymous 15^th century Middle English debate, “A Disputation Between the Body and the Worms.” On that latter, presenter Martin Blum of the University of British Columbia Okanagan read the ancient text “not only as a contemplation of the transitory nature of life, but also as an affirmation of life.”

Which was, in effect, what this conference managed to achieve: pulling together diverse global perspectives on death to create a giant affirmation of life.

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January 16, 2016October 7, 2021

Dying On Your Own Terms

by Fran Johns

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

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September 4, 2015October 7, 2021

Holding Silvan: A tale of loss and love

by Fran Johns

The new mother’s worst nightmare came in shards of bewildering words: “subdural hematoma… basal ganglia… thalami…sagittal sinus…” And the terrible eventual diagnosis: “severe hypoxic ischemic encephalopathy.”

Once they had processed the meaning of it all – that their beautiful baby had no functional brain, no hope for a life, Monica Wesolowska and her husband David made the hardest decision ever required of parents, to let their infant son die. It was a decision complicated by advanced medical technology, a world into which the family was swept up, and by the wrenching physical, emotional and moral issues. But the two grieving parents clung fiercely to the conviction that they were choosing what was best for their son, and to the determination that for whatever time he had they would give him comfort, care and abundant love.

Wesolowska tells this tale with unflinching honesty in Holding Silvan: A Brief Life, a small book that manages to keep the reader mesmerized with what is ultimately a story of courage and, above all, life. She spoke with this writer recently about the book, and those days.

“I wanted and needed to write it,” Wesolowska says, in response to a question about whether the writing was therapeutic. “I felt very fortunate to be able to spend time remembering Silvan. Also, to revisit the time, do research…” Years later, both the experience and the firstborn son are integral to Wesolowska’s life; in the days and weeks after Silvan’s birth there was time only to struggle with the issues at hand. It is the immediacy of this struggle, overlaid with the love that surrounded Silvan as he died, that holds the reader.

After publication, we asked, did Wesolowska get negative feedback? “I was surprised at how little,” she says. “In part, I think it was because so few people want to read a book about the loss of a baby. A few heartening back-and-forths, when people came around. But the most difficult (discussions) are with parents of brain-damaged children. It turns out that what they’re dealing with is much less extreme (damage.)” In such cases Wesolowska tries to communicate the singularity of the choice she and David made. “My goodness, I would never suggest a child with disabilities is not absolutely loveable. I’m not here to judge the difference of your love.”

There were helpful and unhelpful things that people said and did as Silvan was dying and in the aftermath. The best, Wesolowska says, “were the people who told me I was a good mother. What I was going through was motherhood, and a deep love. The hardest to take were when people said ‘Why didn’t you let him die a different way,’ or ‘How can you be so certain?’”

No one, though, tried to talk them out of their decision. In their Berkeley, CA area, “We were in a kind of liberal bubble,” she says. “But we really struggled toward the end. Legally, it was frightening.”

For all the fear, tragedy and loss, Holding Silvan is surprisingly uplifting. And, Spoiler Alert: there is a happy ending.

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August 6, 2015October 7, 2021

Dust to Dust — to save the planet

by Fran Johns

Why is this not a good idea? Wherever you stand on the “ashes to ashes, dust to dust” business, doesn’t it make sense to quit burying tons of toxic materials in the ground along with our dust and ashes?

Recently an idea for better handling of our dust evolved into the Urban Death Project, a nonprofit that caught this writer’s eye with a Kickstarter campaign some months ago. The campaign having surpassed its designated goal, my “Future Tree” tee shirt is now on its way; and the good idea seems worth sharing.

Urban Death Project founder Katrina Spade is not the first to come up with an alternative to the seriously harmful burial practices of recent centuries – practices that dump unimaginable amounts of contaminating formaldehyde, non-biodegradable metal and concrete into the ground, as if the planet had limitless ground to contaminate.

Natural burial, or “green burial” has been around for at least as long as civilization. The writers of Genesis saw fit to include that “unto dust you shall return” line, and most people found ways to make that happen fairly effectively, with exceptions made for the pharaohs. But somehow, embalming and vaults and caskets crept in, and staving off decay became both profitable and popular. Jessica Mitford’s 1963 The American Way of Death exposed abuses of the funeral home industry – Mitford herself had an inexpensive but memorable ceremony in San Francisco this writer recalls with fondness, and her ashes were scattered at sea. Her wildly popular book, though targeting funeral homes, may also have helped kickstart the search for better alternatives to what had become traditional burial practices in the U.S.

Cemetery Jerrigrace Lyons was among the natural burial movement’s pioneers, with the founding of Final Passages in 1995. Lyons sought to “reawaken a choice that our ancestors once held sacred.” Final Passages is “dedicated to the reclaiming of traditional funeral and burial practices,” including green burial. One 65-year-old whose will specifies a green burial puts the issue in plainer terms, declaring he wants “to be part of a tree, part of a flower, go back to being part of the earth.”

Urban Death Project takes green burial to a new level. A three-story cone will form the space into which bodies are gently laid to rest, following a cycles-of-nature ceremony for loved ones. Also within the cone are high-carbon materials which – with the help of “aerobic decomposition and microbial activity” – decompose everything fully into a rich compost

All of which makes perfectly good sense.

It is not easy, however, to give up long-held ideas about dealing with one’s remains after one has presumably gone on to a better place. Family burial plots, oak-shaded cemeteries, columbaria and the scattering of ashes in special places all have great attraction. This writer has long cherished the notion of her children and grandchildren having a couple of lovely parties while they toss her ashes into the Chesapeake and San Francisco bays. This despite knowing that cremation takes high amounts of energy and sends carbon dioxide, mercury vapors and other pollutants into the atmosphere.

But here is the irrefutable bottom line: the total land surface area of planet earth is 57,308,738 square miles, including 33% desert and 24% mountains to divvy up among more than 7 billion people – all of whom will eventually die.

Turning us into trees to shade the next 7 billion? The Urban Death Project could be onto something.

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August 1, 2015October 7, 2021

Fighting off dementia

by Fran Johns

Alzheimer’s – already afflicting well over 5 million Americans – is expected to claim more than 16 million of us by 2050 if a cure isn’t found. Today it is at the top of the Bad News list of potential diagnoses for almost anyone over 50. Justifiably so, since the Centers for Disease Control and Prevention reports than one in three seniors now die with Alzheimer’s or other dementia.

That’s the bad news.

The good news, explained recently by Patricia Spilman, M.S. at a sold-out Commonwealth Club event in San Francisco, is that there are things one can to do lower the risk, and perhaps slow the progress of the disease. Spilman, who is Staff Scientist at the Buck Institute’s Bredesen Lab, should know. She has spent more than two decades researching neurodegenerative disease, and has written and spoken extensively on Alzheimer’s and related diseases.

“Forgetting,” Spilman says, by way of reassurance, “is normal. You don’t need to remember where you put the car keys last week, or a doctor’s appointment last month.” And studies – including one by Buck Institute founding President and CEO Dale Bredesen M.D. that is fascinating even for a lay reader – suggest that cognitive decline can be slowed, or in some cases reversed.

Spilman’s prepared remarks consisted largely of useful, realistic advice about how to delay the cognitive decline most of us will experience at some point. The audience, ranging from 20-somethings to more than a few senior citizens, was furiously note-taking throughout (or furiously jotting down questions for the Q&A session to follow.)

Exercise – particularly activities that combine movement and navigation such as tennis or golf – is at the top of the list. “It’s easier if you have a partner,” Spilman suggests, “because this adds the important element of socialization. Walking, plus climbing, is particularly good if you try new routes.” More than a few audience members nodded knowingly when Spilman noted the increasing, widespread dependence on mindless GPS. “Take the opportunity to look at a map,” she said.

Cognitive decline can also be offset by paying attention to the critical need for plenty of sleep. To help with a good night’s sleep, Spilman advises allowing at least several hours between eating and going to bed, and having a dark room. Chronic stress is relieved by a combination of exercise and sleep, along with those other preservatives of gray matter, yoga and mindfulness meditation.

Also good for the brain: almost any sensory stimulation. Music, smells, touch. Spilman cites Oliver Sacks’ Musicophilia: Tales of Music and the Brain, and Norman Cousins’ Anatomy of an Illness, in which Cousins treated himself with comedy as useful reading.

“Do something new every week,” Spilman suggests; “every day. Have goals in later life. Take classes, volunteer, build intergenerational relationships, pursue spirituality, encourage others to change and to grow.”

Computer games can improve cognition also. Spilman did not mention any specific sites, but this writer has enjoyed BrainHQ, and other brainy items from Posit Science’s Karen Merzenich, as well as introductory games on the Lumosity site. Most fascinating of all is the University of California San Francisco (UCSF)’s Brain Health Registry, in which anyone can participate; it’s free, and your brain might wind up helping someone else’s brain one day.

The Q&A segment following Spilman’s talk was fast and full of both personal stories and pertinent questions: “What’s normal decline?” (The difference between not remembering the movie star’s name and not being able to do a job well. You might keep a diary of cognitive function.) “What about genetics – the father-daughter-son factors?” (Yet unproven.) “How about overexposure to electromagnetic fields? (Don’t have unnecessary radiation.) And enough other issues raised for two or three more hours.

No one’s brain, in any event, was idle. Which indicates that everyone in Spilman’s audience was lowering his or her risk of Alzheimer’s.

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