Life, Death and Rebirth 2019

Note paperThe envelope is lying right here on my left, now looking altogether spooky. It is even stamped and addressed; that’s how close I was to getting a note into the mail.

Then the phone rang. The note was to begin, “So, how are things going? How’s Gerry? How are you holding up?” The envelope is addressed to Gerry’s wife Kathy.

Several months ago our old, dear friend Gerry, age 75, was looking after the horses on their beautiful Southern California ranch when his heart failed. They got him to the hospital, but then came the bad news: his heart could not be revived or repaired. His only option would be a transplant. The good news? Because he was strong and otherwise healthy, he was a good candidate for a new heart. The further bad news? In order to be on the transplant list he would need to remain in the hospital, in intensive care, ready.Heart in circle

Kathy and Gerry are what I would call salt-of-the-earth Good People. They are deeply religious, clean-living and hard-working, and committed to living lives of service and gratitude. Within a few days of Gerry’s diagnosis they found themselves in the unenviable position of waiting for someone, somewhere, to die. Some generous someone who had signed agreements for his organs to be donated. (It would presumably be a ‘he,’ as Gerry is a fairly big guy, and would need a heart coming from someone roughly of equal size and weight.) After talking with Kathy early on in this saga I found myself also having queasy thoughts: How hard should I pray for some good person – do bad people sign organ donor forms? – to die in order for Gerry to live? It is an across-the-board existential dilemma.

The longer he remained in intensive care, the further Gerry’s condition deteriorated. This  presented a scary picture but pushed him higher on the recipient list. In other words, the worse he got, the more urgent his need, the higher his spot on the transplant list. Another existentially fraught situation.

They waited.

New life - typewriterOn August 15 (or perhaps the hours before August 15 dawned,) a 34-year-old man died in another state. A man who was on life support in a hospital because at some earlier point he had taken the generous step of signing organ donor forms. One of Gerry’s doctors flew to that hospital, examined the heart, confirmed it to be a very good match for Gerry, and boarded another jet plane back to Southern California. Gerry was already opened up, his original heart beating – with a lot of help from outside sources – outside his body.

He is already back home. Part of the somehow endearing characteristics of these two old friends of ours is that they do not have email or participate in any social media. So it’s taken Kathy time to get around to calling friends with this lovely update.

Somewhere in the southwest a grieving family is saying goodbye to a 34-year-old they had not expected to lose. “Gerry cries every time he thinks of him,” Kathy says. “There are just no words.”Birthday candles

Other than these: “August 15th is his new birthday.”

 

How Not to Die in the E.R.

Doctors and nurses pulling hospital trolley,“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18
The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

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.

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.

Protests, and Hope for the Future

We considered it a badge of honor. An event I engineered recently (with a LOT of help from my friends) in San Francisco drew luminaries from the interfaith community, women’s rights and reproductive justice groups – and several stalwart protesters holding signs aloft in the chilly drizzle. What’s a champagne reception without protesters?Dr. Willie Parker flyer jpeg

Actually, they were not protesting the champagne reception (though they were there before it started.) They were protesting the main event that followed: Reproductive Justice on the Front Lines. It was a conversation between Director of the UCSF Bixby Center for Global Reproductive Health Carole Joffe and noted physician/author Dr. Willie Parker. Dr. Parker, a deeply committed Christian and an abortion provider, believes it is morally right for a pregnant woman to control what happens to her body. The protesters believe the fetus takes priority over the woman carrying it. To set the record straight, our protesters were hardly worth notice as far as Dr. Parker is concerned – he is used to being the target of threats and angry insults hurled by protesters who regularly surround the deep south clinics where he flies to provide service to mostly young, poor women of color seeking abortion care.

I appreciated our protesters’ civility, but rather strongly disagree with their dismissal of women like me. These sign-carriers would have opposed my back-alley 1956 abortion, demanding that I carry that rape-caused, life-wrecking pregnancy to term.march-crowd

Which brings up this current reality: there are protesters who want to destroy rights, and protesters fighting to keep them. There are sign-carriers wanting to send us back to the dark ages, and fighters for light overcoming darkness. Fighters for human rights, for the poor and marginalized, for the planet, for decency, sanity, truth.

I’m with the protesters who are fighters-for. Their movement aims to get us back to being a country of justice for all, and get the U.S., eventually, back to its long-held place of respect around the world. It’s a movement forward that I joined with the pure-joy Women’s March early this year. Happily those protesters are still out there in force: the Stand-Ups, the Indivisibles, the Occupiers, the MoversOn, the countless other groups all over the country. Young and old, male, female, gay, straight, black, brown, white, they embody that same Women’s March spirit of ebullient hope.

And they are my hope for the future.