I have been fortunate to connect with Abigail Johnston, a dynamic woman who has selected a title for her blog that’s a perfect description of her and her mission: “No Half Measures: Living Out Loud With Metastatic Breast Cancer.”
Faced with a daunting diagnosis that could crush many of us, Abigail has instead seized the time she has to become a patient advocate and educator. While she’s unsparing in her descriptions of her own and others’ ordeals–often worsened by bureaucratic entanglements and seemingly uncaring (possibly burned-out) professionals–her posts are marked by humor, a sense of the absurd, compassion, and practical suggestions. They are life-affirming.
I am pasting her most recent post, “Ring Theory,” below because its approach to communicating with seriously ill people–and their loved ones–provides information that I think we all need. And, when we eventually find ourselves in the center of the ring, I believe we will all hope that those around us are similarly well-informed.
[From the blogNo Half Measures: Living Out Loud With Metastatic Breast Cancer, by Abigail Johnston.]
I ran across this theory early on in my experience with Stage IV Metastatic Breast Cancer and it really resonated with me. The longer I’ve lived with the disease, the more it resonates with me. While I’m horrible at asking for help and often overestimate what I can handle, the kindness of some family and friends has driven home how important this idea really is.
Actually it’s probably more the actions of some family and friends who have not shown kindness that has really driven home how important this concept is to those of us who are dealing with a health crisis.
I’ve included a link below to the full explanation of the theory, but here are the basic tenets, paraphrased from Silk and Goodman:
1. Draw a circle. In this circle, write the name of the person at the center of the Health crisis.
2. Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.
3. In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. . . When you are done, you have a Kvetching Order.
A pictorial representation may help:
The basic idea is that the person in the middle does not receive the venting/kvetching from outer circles, especially when said venting is about the person in need of help.
For example, if you are a family member of a terminally ill patient who spends the night in the hospital with your dying family member, you don’t then get to complain to that dying family member about how that night away from your family was stressful for you or how others in the family did or didn’t communicate nicely when arranging for someone to spend the night.
This theory takes into consideration that the person who is dying is carrying a much heavier psychological load than anyone else and that close family is affected more than distant relatives or acquaintances.
In essence, this theory is how to demonstrate love in a clear and understandable way. Violating this idea creates more and more angst and damage to the person who is already carrying more than a healthy person ever could understand.
Why would someone who loves a dying person want to cause further damage?
Here’s an article that lays out the ring theory in much more detail for anyone who is interested in learning more.
I hope after you’ve read Abigail’s post, You’ll also read the Psychology Today article about the Ring Theory to which she links, and the original LA Times Op-Ed by the authors, Silk and Goodman. The Psychology Today article includes some practical suggestions that are extremely helpful.
Please don’t let yourselves be put off by the rough-hewn drawing; this material is more than worth the few minutes it will take you to read through it all.
Well, sure: the holiday season is, ironically, a time of stress. But we know there are high levels of anxiety that have preceded this supposedly joyous time and will surely follow us into the New Year/decade.
I don’t have to itemize the list: it’s as close as your newspaper or electronic device. All sorts of problems and calamities—natural and manmade—have been occurring just about everywhere.
We can’t change the world, but we do have some control over how we view the world and our place in it. And if enough of us exercise that control, we can make a difference.
How Can We Do That?
By learning from the fortunate fusion of Buddhist practice—validated and adapted by Western scientists. Science writer Daniel Goleman, who was interviewed in an article titled “Can Compassion Change the World?,” collaborated with the Dalai Lama on a book called A Force for Good: The Dalai Lama’s Vision for Our World.
Long a collaborator with scientists, the Dalai Lama set forth his views on how to improve the world with the help of science. When the interviewer asked Goleman why compassion is so important, he said the Dalai Lama wasn’t speaking from “a Buddhist perspective; he’s actually speaking from a scientific perspective. He’s using scientific evidence…which shows that people have the ability to cultivate compassion.”[emphases mine throughout]
“This research is very encouraging, because scientists are not only using brain imagery to identify the specific brain circuitry that controls compassion, but also showing that the circuitry becomes strengthened, and people become more altruistic and willing to help out other people, if they learn to cultivate compassion—for example, by doing traditional meditation practices of lovingkindness. This is so encouraging, because it’s a fundamental imperative that we need compassion as our moral rudder.”
Goleman speaks of “muscular compassion,” and he explained that the term is necessary to demonstrate that
“compassion is not just some Sunday school niceness; it’s important for taking social issues—things like corruption and collusion in business and government, and throughout the public sphere…for looking at economics, to see if there is a way to make it more caring and not just about greed, or to create economic policies that decrease the gap between the rich and the poor. These are moral issues that require compassion.”
The Buddhist term for practicing compassion is Metta—and mindfulness meditators call it lovingkindness meditation. Sometimes lovingkindness appears as one word; sometimes two; sometimes it’s hyphenated. In the scientific literature, it’s abbreviated as LKM. My personal preference is lovingkindness, so for consistency, that’s what I’m using throughout this post.
A Quick Look at Mindfulness
Mindfulness meditation per se, scientific studies have found, regulates attention to create a calm mind, and varied areas of the brain have been identified as showing changes (including increases in gray matter) among those who are regular practitioners—experts—as compared to novices.
Jon Kabat-Zinn, who coined the term mindfulness and developed an eight-week course on Mindfulness-based Stress Reduction that is widely used, defines it as “paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally.”
Practitioners, of whom I’m one, use a focus on the breath to calm the mind. Sometimes people get discouraged meditating and give up too soon because their minds wander, but expert meditators will tell you that every time the mind wanders, you’re becoming aware that it’s happening, and that’s a good thing. You simply return to breathing in and out.
There are many techniques to help you stay on track. That’s a quick look at a complex process that has been scientifically validated to reap benefits as you explore your internal self–mind and body–and your place in the world.
And Now, Lovingkindness…
Lovingkindness is an associated practice to mindfulness. Specific studies have also shown that practicing lovingkindness reduces stress, helps those in the helping professions prevent burnout, aids veterans with PTSD, and possibly even extends life.
One study found that the telomeres—the ends of the chromosomes that prevent deterioration and whose length is associated with longevity—were longer in women who routinely practiced lovingkindness than in those who didn’t.
The Goleman article led me to the work of Tania Singer, formerly the director of the Max Planck Institute for Human Cognitive and Brain Science in Germany. (There’s an irony here that I’ll detail shortly.) Her professional life has been devoted to studying empathy and compassion.
I learned from her that the empathy I’ve always valued isn’t always such a good thing. Empathy, the ability to feel another’s pain, is clearly important for interacting with other humans.
But it can have a stressful side—empathic distress—that leads to potential burnout and a lessened desire/ability to help. The high rates of physician burnout and suicides are examples.
Compassion, on the other hand, doesn’t involve sharing another’s suffering, Singer has observed.
“Rather, it is characterized by feelings of warmth, concern and care for the other, as well as a strong motivation to improve the other’s wellbeing. Compassion is feeling for and not feeling with the other.”
In fact, Singer and her group have found that the apparently similar traits of empathy and compassion involve different, and not overlapping, structures in the brain.
What’s more, because of the brain’s neuroplasticity (ability to change based on training), compassion training can lead to positive results.
“Compassion may, therefore, represent a very potent strategy for preventing burnout. In light of high prevalence rates of burnout and stress-related diseases in Western societies, we anticipate that the present findings will inform other intervention studies on the plasticity of adaptive social emotions….[and] hopefully help to design new training programs aimed at increasing resilience and coping strategies in many domains, including health care, educational settings, and high stress environments in general.”
I watched two videos of Singer, a prominent neuroscientist. describing her work, which includes programs with economists to try to draw up models that more closely adhere to the compassion that Goleman described. She was a compelling and delightful speaker.
However, In 2018, this woman whose life’s work has focused on empathy and compassion resigned as director of the Max Planck Institute after eight colleagues accused her of bullying them and some said she’d reduced them to tears.
Alas! She practiceth not what she preacheth! Hard to fathom, but her poor behavior doesn’t detract from the validity of her research findings.
And it certainly doesn’t seem indicative of what I’ve heard and read about leaders in the field of lovingkindness.
I consider Sharon Salzburg, one of the most respected and beloved teachers and authors on the topic, a personal guru on the journey into lovingkindness that I’ve been taking for a couple of years now.
I believe she’s a reliable guide into how the practice can help us all, physically and mentally, improve our relationships—and even help us enrich the lives of strangers.
Want to Try It?
Though Singer’s neuroscientific experiments took practitioners nine months, it doesn’t take that long to get the hang of it. For those who’d like to try it, here’s what you do.
Because so many of us are our most severe critics, traditionally, we begin by offering these unconditional good wishes to ourselves: “May I be happy, healthy, live with ease.”
We then draw an ever widening circle, extending these sentiments to those we love, to friends and acquaintances, to problematic people whom we wish we could more readily accept, to strangers, and finally, to the entire world.
And the practice of lovingkindness is portable: traditionally, you sit on a cushion, but you can just as easily be walking on a crowded street.
Jack Kornfield, another leading educator, has written that some people find it difficult to begin with themselves:
“We may feel that we are unworthy, or that it’s egotistical, or that we shouldn’t be happy when other people are suffering.”
If that’s how you feel, Kornfield says,
“Rather than start lovingkindness practice with ourselves, I find it more helpful to start with those we most naturally love and care about.” [Start where it’s easiest, he suggests.] “We open our heart in the most natural way, then direct our lovingkindness little by little to the areas where it’s more difficult.”
If you choose that sequence, you might then circle back to yourself after that. Or move on to people whom you find difficult. Eventually, you open your heart to strangers and to all living beings.
How can this approach affect our everyday behavior? Salzburg has a short series of videos depicting various scenarios. In “Street Lovingkindness,” she hones in on Grand Central Station in New York City, a hectic place, during Rush Hour.
But, says Salzburg, “Don’t rush. Take in the world. Look at the people,” and silently send your good wishes to strangers, possibly adding “May you be joyful, peaceful, contented.”
She has also noted: If you’re stuck in traffic because an emergency vehicle is snaking through, you might say to yourself “I hope whoever needs that vehicle is OK.”
Standing in line, she acknowledges, can be frustrating. You want to move faster, to get somewhere. Instead of fuming,
“take a breath, savor the moment. Feel your feet on the ground. Notice those in front and behind you. Fully acknowledge each person [mentally]: ‘May you be joyful, peaceful, contented.’ Just as we seek happiness for ourselves, may all beings be at peace.”
Suppose you’re sitting in your car, in a traffic jam.
“It’s stop-and-go, you’re making no progress. You’re frustrated, annoyed, stressed out, tired of being stuck. Pause, take a breath, feel your body being seated, your hands on the wheel. Look at the others, all moving together. ‘May we be safe, healthy, happy, be at ease.’”
Salzburg speaks of compassion to self as being restorative, rather than allowing ourselves to be overcome by events. She explores our thought processes: “I’m a terrible person.”
How is my holding onto negative thoughts healing me?, she asks. Detaching and running doesn’t work.
We can’t automatically make our pain—physical or emotional—go away, but holding on to our fear and projecting into the future adds to our suffering.
(There’s an oft-repeated phrase among mindfulness folks: “Pain is inevitable; suffering is optional.”)
Compassion, she says, is a unifying experience. It sparks the impulse to help someone else: we’re all vulnerable in some way.
“When a person says, ‘I’m overwhelmed,’ having a sense of community is a tremendous asset. Doing it all alone is hard. That’s the context for this practice.”
If you’d like to listen to a delightful interview with Salzburg, click on this link. Sarah Jones is a gifted actor who creates believable, very diverse characters with her voice and motions. She interviewed her friend Salzburg, asking questions as several different personae.
It’s great fun to listen to. In something many of us can relate to, one of the points she made was “Most days I can barely stand to read the news. But when I do lovingkindness, there’s a shift.”
Salzburg stresses that practicing lovingkindness doesn’t always mean saying “yes.” If you see a street person asking for money,
“whether or not you feel giving the cash would be useful is one thing, but whether you look at that person as a human being is another.”
It’s not new that we feel good about ourselves when we show kindness to others. But it’s something to relearn. In the supermarket where I shop, a tall, thin man is responsible for herding all the shopping carts.
I assume his job is simply to bring order to the carts that shoppers leave wherever they choose (usually not where the sign says “Return carts here”).
But he goes well beyond that job description. He is unfailingly gracious, smiling pleasantly and offering everyone a cart who approachesthe store, or relieving us of the need to return them to the intended area.
Last week, as I was walking to my car, I had a sudden impulse. I turned around and walked toward him. He thought I needed a cart and was about to give me one. “I’m done shopping,” I said. “But you’re so good at your work, and so gracious and helpful, that I wanted to give you this.”
I won’t miss the money, and I’ll long remember the look on his face as he thanked me profusely and blessed me. It was a small act in the scheme of things, but it made both of us feel pretty darn good.
Salzburg has heard it all, and she says there’s a common idea that lovingkindness is stupid, or gooey, or yucky. I like Daniel Goleman’s term: Muscular compassion. And that should lead to action, Goleman said:
“The Dalai Lama often talks to people with great aspirations, and, after he’s gotten them all roused up, he says, ‘Don’t just talk about it, do something.’ That’s part of the message in my book: Everyone has something they can do. Whatever means you have to make the world a better place, you need to do it. Even if we won’t see the fruits of this in our lifetime, start now.”
My Wish for Each of You–and for Us All
As the new decade dawns, I repeat, as I did at the end of 2018, the words I’ve learned from Jack Kornfield and other mindful meditators:
May you be filled with lovingkindness;
May you be safe and protected;
May you be well in body and mind;
Strong and healed;
May you be happy.
And may 2020 find us in a country and world of greater unity, peace, greenness, and kindness. We can make small gestures to move us in that direction.
I’m not terribly fond of Christmas letters, which sometimes resemble those Facebook entries in which people tell you all the details of their day, including every morsel they ingested.
But there was one letter I always looked forward to receiving. It was from my friend Peter, my colleague at the continuing medical education company that was my last job before retirement.
Technically, I was Peter’s “boss,” a word I loathed, as I really believed in a collaborative work environment. But with Peter, it was irrelevant: he needed no bossing.
Though his position was medical editor, he possessed two masters degrees and a PhD. It was our/my great good fortune that he wound up in that office. He was brilliant.
In terms of his work, that meant not simply meticulousness about spelling, grammar, punctuation, organization—even style. He would find errors in physicians’ manuscripts and illogical conclusions in published journal articles.
And he would rewrite passages of the manuscripts we were preparing that wouldn’t otherwise pass muster. Oh, how he could write!
He also had a very offbeat, sardonic, often hilarious wit with an eye for life’s absurdities that others might miss.
And his restless intellect encompassed such varied interests—many different types of music, especially opera (the more obscure, the better), good films, politics, travel, and on and on—that his Christmas letters were a joy to read.
The absurdities parts were often featured prominently. I loved them.
At some point a number of years ago, Peter developed a dry cough. His doctors treated his symptoms, but they lingered.
After several weeks, he told me he was having night sweats. That set up a warning light for me, and I asked him if I could check with a physician friend. She led him to the oncologist who diagnosed a rare T-cell lymphoma. The prognosis wasn’t great.
But Peter had a strong will to live, and he beat those odds. We celebrated his five-year survival.
In his Christmas letters, he wrote about all the medical indignities and horrors he’d been subjected to with an astonishing degree of humor and objectivity—and not an ounce of self-pity.
A few years later, the company we worked for was failing, and I was required to lay off Peter and several other terrific people. I wept; Peter was visibly upset, and I worried that he’d never forgive me.
But he did, and my husband and I attended several of his delightful home musicales/dessert parties, where he and some friends, accompanied on the piano by his very charming and talented music teacher wife, regaled us with songs. He had a fine tenor voice.
Then came a SNAFU Christmas letter, explaining in a matter-of-fact tone that the lymphoma had returned, and treatment had once again commenced.
This was 11 years after his first occurrence. We had all been so sure it was a horror that he’d never again have to face.
After that, Peter’s SNAFU letters weren’t just at Christmas. He began regularly describing his strange new journey—always with humor, always with a sense of the absurd, and—once again—always without self-pity.
He went through hell, but he never dwelled on all that.
His last missive was dated October 20. It was longer than usual because the process to prepare him for stem cell transplantation had begun.
He knew the odds were not in his favor, and he knew what he was facing, but his incredibly strong desire for life overrode all else.
He titled the email “SNAFU Sequel: A Million.” The million referred to the first count of his harvested cells. But “a million cells is not like a million dollars,” he wrote.
“Ideally, a transplant for T-cell lymphoma requires 6 to 10 million stem cells.”
The last amount he documented was a harvest of 2.8 million cells, and it was increasing.
Despite his situation, he found silliness everywhere. Told in the hospital to go to room 318 for an MRI, he walked through a long dark corridor where there were no rooms.Suddenly the hall ended and became room 318,
“and there we entered a new dimension…The room and atmosphere reminded me of the creepy opening hotel lobby scene from Stanley Kubrick’s The Shining. The MRI was uneventful.”
“As with Stalin’s 5-Year Plans, the pace of my medical procedures accelerated as I got closer to a transplant date.
“On Monday (the 14th), we had to be in at 6:30 AM for a procedure to insert a central venous catheter with 3 lumens (the proprietary name is Trifusion, but I call it King Ghidorah, after the ludicrous 3-headed Japanese movie monster that appears to shoot arcs from Tesla coils) to facilitate the harvesting of stem cells…
“At 10:30, I was instructed to have blood work, and then we had to wait until 6 PM to get an injection of Mozobil, which is designed to promote the creation of stem cells (it is very expensive, so the pharmacy only makes it at 6, and only if the patient is present).
“That left 7 hours to sit in the hospital to get a single injection. I decided to play a literature game, inspired by Woody Allen’s film Love and Death, in which 2 characters converse using Dostoevsky novel titles (e.g., ‘They say he was Possessed.’ ‘No, he was an Idiot.’).
“As a patient and medical editor, I have dealt with absurd drug titles that lend themselves to bad literature. With apologies to Sophocles, here is my one and only Greek tragedy (those not in medical education may want to skip this section).”
[Note from Annie: All the names below refer to medications or medical procedures; I’m assuming Peter had endured each one.]
“In the city-state of Amlodipine, known for its high level of education and culture, King Azacitidine and Queen Romidepsin rejoiced at the birth of their son, Granix. According to custom, they brought the child to the Temple of Invokana.
“They were alarmed when the high priestess Apheresis prophesied that Granix was destined by the gods to be the worst playwright in history.
“They tried to avoid the prophecy (not recommended in these plays) by sheltering their son and home-schooling him.
“When they died, he was unaware of the prophecy until the soothsayer Carmustine revealed the curse. Terrified, Granix changed his name to Zarxio and fled into exile.
“He decided to avoid his fate by settling in the city of Thiazolidinedione, whose ruler, King Actos, forbade all education and culture.
“Soon, however, the city was besieged by the dreaded monster Mozobil, who tormented the population with riddles such as ‘How do you spell your city’s name?’ ‘Is the word ‘data’ singular or plural?’ ‘Is ‘health care’ one word or two?’ In desperation, King Actos issued a proclamation for anyone to rid the city of the monster.
“Displaying his hubris, Zarxio stepped forward and answered all the riddles, and then drove Mozobil away by challenging him to explain why ‘nonadherent’ did not have a hyphen. Instead of gratitude, King Actos wondered why Zarxio knew so much, in a city where being educated was a crime.
“Eventually, Etoposide of Amlodipine, who had been searching for Granix, heard about Zarxio’s exploits. Etoposide explained that Zarxio is an alternate form of Granix, unmasking the criminal.
“For defying the will of the gods, Granix was banished to the realm of Polypharmacy, where, in a drug-induced stupor, he churned out the worst plays of all time.
“The moral: It is better to play with your cell phone than to try to write a Greek drama.“
Peter provided considerably more detail about what he was experiencing, and then wrote:
“Now for the reason this is such a long SNAFU. The current plan is for me to enter the hospital next Tuesday or Wednesday… In order to ensure the complete response, for 6 days I will receive a very strong chemotherapy called BEAM…, which is associated with serious adverse effects.
“ If nothing else, my multiple regimens (Hyper-CVAD, CHOP, ICE, clinical trial, and soon BEAM) will make me a connoisseur of chemotherapy.
“After 1 day off, I will have the transplant and continue to stay in the hospital for about a month. The SNAFU Sequel will be on hiatus.
“I am sure that when I return there will be numerous hilarious episodes to recount. With a recovery period that may last a year, the SNAFU Sequel will inevitably become a tome.”
He then observed:
“The hospital neighborhood, which I have noted is a nightmare of construction vehicles, iron plates, and gridlock, has a few surprising areas of calm as well.
“Across the street is an armory where I ran track while in high school, providing me with an unintentional foundation for surviving lymphoma.
“One block west, the traffic noise cannot be heard.
“Instead, you see a veritable United Nations of medical students with their youthful exuberance, quizzing each other and giving one some confidence in the future, as opposed to our political situation.
[Here he expressed his profound gratitude and love for his wife and appreciation for his friends—and then became philosophical]
“The Tao Te Ching, perhaps by Lao Tzu (Laozi), contains an often misquoted statement, with the true meaning close to ‘The journey of a thousand begins beneath one’s feet’ (obviously, they did not measure distance in miles 2,500 years ago).
“However, my own path has comprised many paths. A better way to sum up my treatment journey is a quote from the Pirkei Avot, compiled about 2,000 years ago:
“‘You are not obligated to complete the work, but neither are you free to desist from it.’
“So off I go to the big city, with Kander and Ebb’s ‘New York, New York’ ringing in my ears.”
At his wife’s suggestion, I had planned a phone call with Peter shortly and a visit once he was out of isolation. Peter died on November 19 at age 65. He left his body to science.
His wife referred to him as her “brave warrior.” Though he was a peace and social justice advocate, her words seem apt in terms of how valiantly he fought to remain on this earth.
I learned many things from Peter, and one of them was the extraordinary intelligence of rats. Yes, rats.
Peter requested that anyone who wanted to make a contribution in his memory send it to Apopo, a non-profit organization that trains African giant pouched rats to save the lives and limbs of children and others by detecting landmines that are buried in more than 60 countries that had been at war. The rats can also detect tuberculosis, which is often otherwise undiagnosed and therefore deadly. Thus, they are called HeroRATS.
I’ll end this post by borrowing Peter’s typically Peter closing. I find its generosity of spirit, in view of his own circumstances when he uttered these words, nothing short of remarkable.
“I hope you all have wonderful times and holidays ahead. Remember to laugh!”
Three women, strangers, seats 23D (aisle), 23E (center), 23F (window).
One soybean farmer, one blogger, one psychotherapist.
Flight delayed by weather at destination.
10,000 feet above ground, swiftly nearing landing.
23D and E heading for home.
23F preparing for romantic rendezvous with second husband.
Twenty years married, only one previous holiday sans kids—hers/his.
He’d joined his kids for one lap of their year sailing ‘round the world.
I have to pass through Portugal on my way home, he’d said.
Why don’t you meet me there? She was thrilled.
Meet in Lisbon, tour the countryside.
Time was 7:40 PM. Connecting flight gates to close at 8:15.
Why don’t we change seats now? suggested 23D.
The change was made. Traveler-in-motion now seated on the aisle. Precious minutes saved.
Maybe tell the flight staff to call ahead? offered 23E.
The call was made. Anxiety easing.
I can’t find my boarding pass, lamented the traveler-in-motion.
Here it is, her companion said, picking it up from the floor.
A spontaneous warm hug from the traveler-in-motion.
Shared moments, caring among strangers. Empathy in action.
A week before Thanksgiving, but appropriate for the season.