Paying New Year’s Blessings Forward

noah & zahraIn a new year with meanness and cruelty on the news every day, there are counter forces at work. Here is my favorite Pay-It-Forward story so far for 2019. It involves my lovely friend Eva Zimmerman, who agreed to let me to share it. Eva and her husband, Noah Schreck, welcomed their first child, daughter Zahra, into the world last spring. But the exuberant joy they were having was interrupted by Noah’s diagnosis of colon cancer, requiring surgery in December.

On January 2, Eva posted this story (lightly edited here) on Facebook.

“Noah is home! He has a lot more healing and resting (and eating) to do to get back to his old self and Zahra is being super helpful by screaming and screeching at a newly-discovered ear piercing volume, constantly. We’ll readjust and recalibrate and make this work. We’re thankful to be together.

“We are so fortunate to have so much support. Meals waiting on the porch, welcome signs and ice cream delivered, childcare, and just the love and prayer that we’ve felt this entire time… Thank you, all.eva, noah, zahra

“As I was leaving the hospital with all of Noah’s belongings, taking everything to the car to load it and go pick him up in the patient loading zone, I stood watching a beautiful young black couple comforting each other as they were waiting for the parking lot elevator. The elevator opened, she entered, he motioned for me to go ahead of him, he held the door open for me. As we stood there, heading to the same parking lot floor, he wished me a Happy New Year. I told him that it truly was a Happy New Year, that I was taking my husband home today after almost two weeks in the hospital.

“The woman said, ‘Our son will be here for the next two weeks.’ I told her I hoped he’d be home soon, healthy. She said, ‘Hoping for soon and cancer-free.’ I told her, ‘My husband is leaving today, cancer-free.’ She said, ‘This is why he’s here, they are doing surgery to remove his cancer.’ I told her that this is exactly why my husband has been here, they got it, they got the cancer, and he’s leaving today cancer-free. She and I held hands and I said, ‘I’m sending the blessing to you all now. It’s with you now.’ As we walked to our cars, she told her husband of the chills that went through her and simultaneously, they went through me.noah & zahra1 Though incredibly hard, we’ve been protected through this, because of you all. I gave that protection and blessing back to another family just as we left. It was a moment I’ll never forget. I don’t know their name. But as I write this, I’m watching Noah sleep next to me, and I’m thinking of them, envisioning their son home safe, soon and cancer-free.”

Take that, meanness.

It’s a Happy New Year in Ethiopia

Ethiopia 9.14.18

Some of the host crew

Happy Enkutatash (that’s እንቁጣጣሽ in Ethiopic) to us all. Ethiopian New Year actually fell on September 11th, but we’re still celebrating in San Francisco.

A group of gorgeous young Ethiopian women (and a couple of handsome guys) who work in the dining room of the geezer house where I live put on an Ethiopian New Year’s festival today, complete with a vast assortment of delicious, spicy dishes I cannot pronounce, a coffee roasting demonstration* (see below,) an exhibition of traditional dance (intermittently joined by a few nontraditional American geezers) and one precious but disinterested two-year-old.Ethiopia3 9.14.18

We also got a lesson in international understanding. So herewith, some facts you might not have known about our faraway neighbors:

Ethiopia, founded in 980 BC, is one of the oldest nations in the world, and the only country in Africa that was never colonized. Its citizens had to beat back the Italians twice, but remain independent to this day.

Ethipioa1 9.14.18The official Ethiopian language is Amharic, but more than 80 languages are spoken. None of them are easy for English-speakers – although this writer is proud to have mastered the Amharic word for “good morning” (which I cannot spell.) This may be as far as I go. Ethiopia is also the only country in Africa with its own indigenous alphabet, but there are 33 main alphabets with each containing a row of seven different pronunciations . . .  The Ethiopians I know speak English with beautiful accents.

Ethiopians are famous for being great runners. Some of us are old enough to remember when Abebe Bikila won Africa’s first Olympic Gold Medal in 1960, setting a world record when he ran the marathon – –  barefoot.

While the majority of Ethiopians are Orthodox Christians, the country embraces practitioners of all three Abrahamic religions – Christianity, Judaism and Islam.Etheopia2 9.14.18

*About the world’s most popular breakfast drink – Coffee was discovered in Ethiopia! Legend has it that a sheep herder in the 11th century noticed his sheep having a fondness for a particular bush, and decided to try a nibble. The coffee industry took off from there. Ethiopia is now the largest coffee producer in Africa.

And finally, Ethiopia and Eritrea are about to sign a peace agreement ending a bitter, long-running dispute. Could we learn something here?

Peace and joy and Happy New Year!

dove of peace

Weird Times and Guardian Angels

“I don’t know where I am,” I said. “I don’t recognize this place.”

“Well, you did get here. Where’s your car? Did you drive?”

“I don’t know how I got here.” And since I also didn’t know where I came from or where I lived, it was not going to be easy to get home.050910-F-MS415-009

My short-term memory had totally, inexplicably vanished

I had just told the story of my long-ago (1956, to be precise) back-alley abortion at a fundraising event for nonprofit TEACH (Teaching Early Abortion for Comprehensive Healthcare) in a San Francisco theater. One five-minute speaker followed me, and the program ended. When we got up to leave – I was on the second row next to my young friend Alexa and her visiting aunt and uncle – I didn’t know how to get to the lobby. Since I had met with other speakers onstage before the event and had led my guests to our seats, something was obviously weird. We finally did get to the lobby, where we had met and visited before the event, and the above exchange took place. At that point something weird turned into something frighteningly wrong.

Alexa left her aunt and uncle to find their own way back to their hotel, summoned a cab and gave the driver my address. Later I would have a dim fragment of memory about being in the cab, and another fleeting memory of entering our building, going up to our condo and then seeing my husband.

“Something’s wrong,” I said. “I need to go to the hospital.” He and Alexa had long since come to that conclusion. She had been texting with one of my children on the east coast and on the phone with my husband since the exchange in the theater lobby. Finding my car safely in its garage space, she had already called a cab to get to the emergency room.  But after that moment of seeing my husband, the next four or five hours are lost to me forever.

Its official name is Transient Global Amnesia. If you have it, it’s a good idea to be among friends.

Since I come from a long line of stroke victims, that had been the immediate fear. But it only took a few tests in the Kaiser ER to rule out stroke, a few more to rule out other serious afflictions and arrive at the diagnosis of TGA. Sometime around 2 AM my conscious memory swam back to the surface of reality, which was Alexa sitting on the side of my bed. Then, with a little help from some drug they gave me, I fell asleep.Guardian angel

Fewer than one half of one percent of people in the U.S. experience episodes of TGA every year. It is most common in people between ages 56 and 75, with the average age being approximately 62 – unless I’ve now upped that by a decade or so. For the victim, TGA is really no big deal. You don’t remember anything anyway; but there’s no pain, no suffering, no after-effect and no permanent damage. All I do remember is the comforting vision of my lovely friend, who is known as my West Coast Daughter (now additionally Guardian Angel), sitting on the side of my bed. I was visited by numerous concerned physicians and nurses, several of whom said they’d never heard of TGA.

But now we all have! Before sending me home the next day the very cautious Kaiser people did an MRI of my head, and lo, my brain was still there. Actually, it was functioning on remote even while I was malfunctioning. When posing the traditional questions about what year it was (Nope, didn’t know) etc the ER doctors asked if I could say who is the president of the U.S.

“Noooo,” I said, “but I know I don’t like him.”

 

Gag Rule Harms Millions of Women

Can you muzzle a million women? Really?

Female symbol

Unfortunately, that’s exactly what the Global Gag Rule seeks to do. Reinstated by President Trump two days after the Women’s March on Washington (take that, women of America,) the Global Gag Rule stipulates that non-U.S. nongovernmental organizations receiving U.S. family planning funding cannot inform the public or educate their government on the need to make safe abortion available, provide legal abortion services, or provide advice on where to get an abortion. Thus, every one of the organizations working to provide critical, comprehensive healthcare to women around the globe who desperately need it must either promise never to mention the A-word, or lose the funding that allows them to continue. We’re talking nine billion dollars.

Never mind that Marie Stopes International has estimated that without alternative funding – not easy to come by – Trump’s GGR between 2017 and 2020 will likely result in 6.5 million unintended pregnancies, 2.2 million abortions, 2.1 million unsafe abortions, 21,700 maternal deaths and will prohibit the organization from reaching 1.5 million women with contraception each year.

Susan Wood IWHC

Susan Wood

Other statistics are equally mind-boggling. Ibis Reproductive Health data shows the harmful effects of the GGR around the globe. HIV prevention efforts suffer. Health clinics close. Rural communities lose access to healthcare.

This dangerous foolishness started with Ronald Reagan, who enacted it by presidential decree in 1984. Since then, every Democratic president has rescinded it, and every Republican president has reinstated it.

Two women with long experience and a deep understanding of the GGR and complex issues involved spoke at a recent event in Marin. Susan Wood, Director of Program Leaning and Evaluation for the International Women’s Health Coalition, and Caitlin Gerdts of Ibis shared the extensive bad news above – and a glimmer of good news:

Caitlin Gerdts-Ibis

Caitlin Gerdts

A bipartisan (though predominantly Democratic) group is behind a bill which would permanently end the Global Gag Rule. Senator Jeanne Shaheen (D-NH) and Representative Nita Lowey (D-NY), along with an unprecedented number of original cosponsors, introduced the Global Health, Empowerment and Rights (HER) Act. The Global HER Act would remove dangerous eligibility restrictions on international recipients of U.S. foreign assistance and would ensure that U.S. foreign assistance prioritizes women’s health.

The Global HER Act would also:

  • Allow foreign organizations receiving U.S. aid to use non-U.S. funds to provide safe abortion and other medical services that are legal in the U.S. and in the respective countries.
  • Promote safe, ethical medical practices by removing discriminatory restrictions on essential health care services.
  • Support and encourage democratic participation and freedom of speech abroad.
  • Nullify any existing U.S. law or policy that interferes with these provisions.

After decades of yo-yo-ing U.S. political whims, this bill would finally put the health and safety of women around the globe on a steady footing. Miracles happen.

 

 

 

 

 

Death, Dying and a Few Questions

Third & final report on a few highlights of the global conference ‘The End of Life Experience: Dying, Death & Culture in the 21st Century’ in Lisbon, March 2018

Question markWhat are the tough end-of-life questions facing the people of Australia? Pretty much the same as those facing the people of the U.S. Or the U.K., or Canada, or Portugal. A few of those discussed at the recent End of Life Experience interdisciplinary conference in Lisbon would include:

How, exactly, do we define death after all? Iona College Professor Vincent Maher, who holds a variety of degrees and whose career has included broad based legal, health care and non-profit sector experiences, presented a paper on the complex case of Jahi McMath. McMath was declared brain dead following surgery to correct a sleep apnea condition at Children’s Hospital, Oakland CA in 2013. She was 13 years old. Her family refused to accept the declaration of death and insisted she be kept on a ventilator. “Court interventions, news and social media exposure ensued,” Maher explains. “Fingers were pointed. What should have been a difficult but straightforward medical decision became a management, ethical and legal fiasco.” Eventually the family succeeded in having Jahi flown to New Jersey, one of two states (New York being the other) which follow a family’s definition of death. This policy was designed to accommodate Orthodox Jews, some of whom believe that the presence of breath signifies life. Jahi remains on a ventilator and feeding tube, with 24-hour care covered by Medicaid; her family still hopes to bring her back to California – where the coroner issued her death certificate in 2014.Grim reaper

Set aside the ethical, racial (McMath is African American,) financial and other questions, what is death? When the heart stops? When breathing stops? Or when the brain is dead? Medical technology can now keep a body functioning after brain death – organ donation is benefiting from this – but at some point, death takes over.

Can we keep control of our lives as they are ending? Increasingly, no, says Dr. Peter Saul, Senior Specialist, Intensive Care Unit, Calvary Mater Newcastle, NSW, Australia. “Dying in the 21st century in a wealthy country,” Saul says, “is now dominated by elderly people with significant disability, sometimes cognitively impaired, faced with making complex end of life care choices.” And those choices commonly follow “standard (medical) protocols and (are) in line with family wishes regardless of preferences recorded in advance care directives.” Australians, like the majority of people everywhere, would choose to die at home, Saul says; but “the entire structure and funding model of Western medicine greatly favors tertiary and hospital care over that provided in the community.”

Saul suggests that “the medical system at all levels would need to become proactive in creating genuine opportunities for choices to be available. This means asking more, offering more education, taking choice seriously and pushing back against a legal system that favors defensive medicine and over-treatment even in the same breath as pushing ‘patient autonomy.’”

So, is there anything hopeful on the horizon for the end-of-life experience? Definitely. Ottowa, Canada psychologist Morry Appelle and his wife, therapist Christine Appelle presented a paper on a discussion group they started five years ago “in an attempt to address more consciously and formally our own concerns of death.” They were surprised to find eager participants who became faithful, regular attendees, and who agreed to allow videos of some of their meetings to be shared. It is a remarkably effective way to confront mortality.

Planet earthThis writer left Lisbon urging the Appelles to publish a book about their novel idea, but you don’t really have to wait for the book. A group of friends or strangers willing to meet together for an extended period of time and simply talk through everyone’s fears and concerns offers an invaluable way to face, and embrace, life’s end. Such an experience could well lead to the patient autonomy and personal choice currently under threat in wealthier nations around the globe. It would undoubtedly help to have someone like Morry &/or Christine Appelle as facilitator. “Mostly,” they said about their experimental group, “we wished to look more intimately at the mystery of life and death, thereby dispelling some of its associated anxiety and fear. To the extent we could live out this life as fully and consciously as possible, we proposed that lifting the veil on death was a reasonable place to begin.”

The Lisbon conference did a lot of veil-lifting. Also lifted up? Questions worth pondering, wherever on this fragile planet we happen to be sharing our fleeting mortality.

A Global Look at Death & Dying

Three things you and I have in common with the rest of the world: We are born, we live, we die.

Lisbon - Conference brochure

Conference brochure

Dying being so universal, it seems appropriate to talk about it. But the truth is we seldom do that, unless it’s happening to somebody else. An interesting group of people who do talk about it got together recently for a global conference in Lisbon I was lucky enough to attend, The End of Life Experience: Dying, Death and Culture in the 21st Century. It was put on by Progressive ConnexionsInterdisciplinary Life, a not-for-profit network registered in the U.K. (Freeland, Oxfordshire) and a successor to the organization that ran earlier conferences I attended in Prague and Budapest. Full disclosure: Part of my motivation for the hard work of creating papers for these events is the mesmerizing pull of Prague, Budapest and Lisbon. That mea culpa is now out of the way.

As end-of life conferences go, this was the best. Not because any great, existential questions were answered, but simply because it proved so eloquently that we’re all in this life (and death) together. We struggle with the same questions about pain, loss and grief; we face the same dilemmas about aging, illness and dying itself. Whatever corner of the planet, whoever we are.

Lisbon - Castelo view

Lisbon at dusk

In my group in Lisbon were a couple of anthropologists, professors of everything from Philosophy to Nursing to English Literature, an actress/storyteller, some doctors & nurses & clinical psychologists, an interfaith chaplain, a textile artist – just lovely people from corners of the planet like Portugal, the U.S., Canada, Malaysia, U.K., Australia. Ordinary people sharing extraordinary insights shared below (and in subsequent posts on this page.) No attention was paid to titles and degrees – a very good thing for me, since an MFA in short fiction wouldn’t exactly be at the top of the list; attention was paid only to the voices, insights and generously shared thoughts. Here’s the first report:

Pain. Nobody gets out of life without pain, and since it’s often a big factor in end-of-life experiences, pain got its share of attention in Lisbon. Conference chair Nate Hinerman (a professor at Golden Gate University in San Francisco) submitted a paper titled “The Death of Hospice” which was in the first conference segment. Because he was committed to keeping to a strict time schedule – and this was a talkative group not easy to settle down – Hinerman skipped the actual presentation of his own paper. But it was appropriate to the broader issues addressed in the first segment, of which I was a part. There are some big questions here.  Pain

“I argue that as boundaries blur between palliative care, hospice care, and patient-centered curative care,” Hinerman writes, “ultimately, palliative care ought to the goal.” Palliative care means, essentially, do everything to alleviate pain – for patient and family alike. Focus on quality of life rather than life-extending treatments and technologies. “Patients do not benefit,” Hinerman says, “from boundaries like those, say between disease-centered care and palliative care. Or say between palliative care and complex chronic conditions management. Or again, especially between palliative care and hospice.”

In other words, are these fine points (which are eternally argued by professional groups – as well as insurance companies) focused on you and me – patient and patient-advocate – or somewhere else? Boundaries get blurred. “We still need policy changes to support this (palliative care) work, and payment structures to ensure coverage of palliative care.” Hinerman says.

Which brings us to another common theme: money. In both the formal sessions and in casual conversations throughout the conference, the issue of the almighty dollar was often raised. The problem of how to pay for healthcare needs is not confined to the U.S. But more common, and more complicated, is the also-universal question of distribution of finances. Such as: if we spent less on the last few days of life – emergency room and intensive care unit costs are significant especially in the U.S. – could we put those dollars to better use somewhere else?

Lisbon presentation

Doing my presentation

My own paper looked at two different models of Continuing Care Retirement Communities in the U.S. One is a church-related not-for-profit community with independent living, assisted living, nursing and dementia units. Newcomers must be mobile and reasonably healthy, and pay a substantial entry fee, but – as my brother-in-law remarked when he and my sister moved into a similar facility in another state, “the advantage is, they can’t throw us out.” The other is a condominium building in which residents own their apartments but buy into the management company, a national for-profit corporation which furnishes meals, assisted living in owners’ apartments, activities, etc. Both have substantial monthly fees; the condominium community’s are higher, but when a resident dies at least the heirs profit from the unit’s sale. CCRCs now number almost 2,000 across the country – and, while fairly well regulated, none of them are cheap. It is a very big business. One of my questions is: should these populations of aging and dying Americans, among the most vulnerable of groups, be caught up in a multi-billion-dollar enterprise? If something comes up that requires a choice between the aging residents and the bottom line, which direction do giant corporations usually go?

After my presentation, which was mostly a group discussion about such choices, a conference speaker from Malaysia approached me to apologize for not having participated. “In my home,” she explained, “if I were to allow my parent to live in one of those places, no matter how nice it might be, it would bring great shame on my family. Our culture mandates that the family take care of its aging members.” Ah, so. In our U.S. culture, that was also true as recently as two or three generations ago; but we have become so scattered, and so technologically and institutionally advanced, that living with family through dying is a rarity today.

All of the above offers more questions than answers. But they are universal questions and worth pondering: When you’re seriously ill and in pain, what kind of care would you choose? Where would you prefer to die, ICU or at home? Where will you spend the retirement years leading until you die? Pondering – and creating written plans – could avoid a lot of grief for you and loved ones alike.

Lisbon conference group

The 2018 EOL Experience Conference Group

 

Next week: The Lisbon Conference: Appearances from beyond the grave

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

in addition to supplying trained providers, and maintaining ongoing public engagement.We need to increase the consumer demand, and at the same time, continue to pursue palliative care with hospital administrators, so that those services can be bolstered.

Aging, Guilt & When to Complain

One of an occasional series on the advancing years

It’s more than a little ominous: 85. I mean, look at all those good people who missed this mark in just the past few months or so: Oliver Sacks, 84 – just barely. Dead Poets Society founder Walter Skold, 57. Peter Mayle, 78. David Cassidy, 67. Stephen Hawking for heaven’s sake, 76. Approaching 85 is its own little why should I still be around anyway? season of guilt.

Guilt - Lachlan Hardy

(Lachlan Hardy)

So perhaps it’s only right that the impending milestone might involve a teeny negative or two. Guilt will do it every time. For me, it’s a nagging suspicion that this party is about to be crashed. On March 15th of my last turn at being 84, for example, I woke up at 5 AM, even before the alarm rang, to catch a flight beginning an overseas adventure. Everything went right. Bags properly packed. Good breakfast. All devices and power cords cross-checked. Problem-free trip to the airport. Zip through security. Thirty minutes before boarding time, when I heard my name being summoned to Gate 11 it was not even a surprise. Probably left my wallet at home, I figured, or someone just called to say the conference had been cancelled. It was so unexpected, this call, that by the time I reached the gate I was fully reconciled to having had too much good fortune for any one day. They wanted to offer me $500 on a future flight if I’d trade my Business Class upgrade. Such is the emotional hazard of approaching 85.

Then there is the limitations business. Pre-80, who worried about acknowledging limits?  Certainly not I. At 72 I signed up to run my first marathon, just because I figured everyone should try to run a marathon before hitting 75.Runner A bout with breast cancer intervened to mess up my training, but I got back on track at least enough to finish the half, feeling absolutely confident I could’ve kept right on going. (Although probably not for another 11 or 12 miles.) And then. One day in Paris, having inched past 80 with no further temptations into distance running, the ominous stairs challenge sneaked up on me. I had only recently moved, at the time, out of a 4-story house in which I was constantly zipping from laundry (ground level) to studio (4th floor) with nary a care. Thinking it would be fun to trip up the circular staircase to the top of Notre Dame right before closing time, I got about 30 steps and decided to let the rest of the group go ahead. More slowly, I climbed another 20 or 30 steps before my little heart said, “I don’t think so.” This would’ve been less embarrassing were not the Notre Dame lookout designed as one way Up, straight across, and one way Down the other side. Luckily for me the concessionaires were just closing up shop and let me follow them down the Up staircase, which is why I did not have to spend the night locked inside the cold stone walls of Notre Dame.Nob_hill_view

Ever since, I have begun to notice limitations on previously-negotiable San Francisco hills. If the heart doesn’t send out alerts, the lungs huff and puff their indignation. This happens a few times to my intense consternation, and I make an appointment with my doctor. I complain a lot. She orders tests that proclaim everything is just fine and dandy. She speaks briefly of the really sick people under her care, mentioning a few of their ages and afflictions. “You’re 84 years old,” she observes; get over it.”

How am I going to complain when I hit 85?