I know the world is crazy right now — and here’s what you can do about it

“I know the world is crazy right now. I know it’s hard to find the good in the news but you won’t find it there because the news asks you to be only a passive consumer of the world’s pain and joy. What we need to do is rise from our seats and participate in the world as fully as possible.”
Chris Corrigan, Pick up the unclaimed portion of joy

Illustration from The Never-Ending Play Of Life, in which Bernie De Koven is quoted by Chris.

How to live your life

Two important truths from Stephen Jenkinson:

“…it’s the awareness of death — and not happiness or positivity or stoicism — that allows us to live fully in the time that we have.”
—Stephen Jenkinson in the 2008 documentary Griefwalker

and

“…live your life as someone who has an enduring obligation to that which has kept you alive.”
—Stephen Jenkinson, in an interview in The Sun, August 2015

Photo attribution: Flickr user x1klima

Shut up and listen

Shut up and listenOne of the hardest things for me to do is to shut up and listen.

“If I could give just one piece of advice to all medical students, I would say, ‘Show up completely, and then shut up for at least two minutes while the miracle in front of you tells you who they are and how you can help them.’ If every doctor did just that one thing, it would change medicine.”
Raymond Barfield, Professor of Medicine and Divinity, Duke University, from “The Miracle in Front of You”, January 2016 interview in The Sun

It’s hard for me to shut up and listen because I get sparked by what people say and I want to respond.

It’s hard for me to shut up and listen because people often talk about their problems, and I love solving problems—even when I haven’t been asked to solve them.

It’s hard for me to shut up and listen because I have a need for connection with others and want to share who I am, sometimes more than is best for our relationship.

Yet, when I am able to shut up and give the gift of listening, the odds that the person speaking feels heard increases.

And, when I am able to shut up and give someone sharing a problem the space to say fully what’s on her mind, it’s more likely she’ll ask me what I think, and then, perhaps, I can help her.

And, when I am able to shut up and connect with someone through listening well, I’ll usually end up connecting with him more deeply.

Finally, of course, when I shut up and listen well, I’m less likely to miss important information that I need or want to hear.

We can all—especially me—benefit from shutting up and listening.

I’m working on it.

Playing with myself

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“Yesterday I took the Trailways bus home from New York City. My seat had a small video screen above it. (The screen was blank.) We had a stop at Kingston, and as I stood up, I hit my head on the screen — then laughed at my blunder. My life is a slapstick comedy for an audience of one.”
—Sparrow, The Sun, July 2015

My life is a slapstick comedy for an audience of one.

At moments like these, my life feels perfect.

Photo attribution: Flickr user jliba

My father’s death—should we force the terminally ill to accept sustenance?

In 2007 my father was slowly and painfully dying from side-effects of Parkinson’s disease. I am sharing here an astonishing newspaper article—written by columnist and registered nurse Richard Davis—on my dad’s and family’s experience. The article was widely distributed around the world and I still occasionally receive requests for a copy, so I am reposting it here.

April 27, 2008

THE DEATH OF JOSHUA SEGAR

By
Richard Davis, © 2008
Brattleboro Reformer: May 23

BRATTLEBORO- Newspaper obituaries provide a few glimpses into the lives of people. They serve to provide friends and relatives with news of a death and the details of plans for funerals and memorial services. Rarely, if ever, do obituaries describe the way a person died. Perhaps it is too morbid for most people to contemplate, but how we die is just as important as how we live.

“Joshua Mark Segar, 84, died peacefully at his home on Tuesday, December 11, 2007. Mr. Segar (a.k.a. Josh, Joshie, Jeff, Joe or Mark) was born in London, England on Dec. 21, 1922. At the age of 13, in order to help support his family, he was forced to leave school and was apprenticed as a barber.

During World War II he served in the Rifle Brigade for five years without a break, fighting in North Africa, Italy and Germany. On his return to London, he was able to open his first barber shop. On weekends he played drums in a dance band and as a session musician for Stephane Grappelli, among others.

In 1948 he married Lilly Solley, the love of his life. Segar became a successful small business man, eventually owning a chain of hairdressing salons and a flourishing electric shaver supply and repair business.

He was the president of the British National Hairdressing Federation and the Hairdressing Council for many years. He loved opera, traveled extensively and was a lifelong learner of art and art history. He was kind, thoughtful, humorous, hard working, loving and generous, a devoted husband and loving father, grandfather and great-grandfather.

In 2004 he moved from England to Brattleboro in order to be closer to his children. During three years of declining health, he showed great fortitude along with his ever-present wit.”

Reading Segar’s obituary, we can get a sense of what kind of life he led. But in order to understand this complex man it is just as important to understand how he died. That part of his life began with the onset of symptoms of Parkinson’s Disease.

Parkinson’s Disease is a progressive degenerative neurological condition that results in a wide variety of symptoms which can vary in severity among individuals. It is not considered a life-threatening disease in the strictest sense. Segar coped with the disease for a few years, but in 2007 the symptoms became severe and the quality of his life was deteriorating.

His wife of 55 years had been dead for two years and he told his family that he always thought he would die before his wife. Segar enjoyed a loving relationship with his family in the U.S. His 56 year old son Adrian and his family in the Brattleboro area and his 47 year old daughter Alison and her family in Burlington stayed close to their father.

His greatest pleasure came from his family and perhaps that is why Thanksgiving marked a turning point for him. According to Adrian, “We spent this Thanksgiving at our home—my wife, my dad, my older daughter and her family. Thanksgiving is our favorite family holiday, but this Thanksgiving was different. Now dad could barely swallow, he was in serious pain much of the time, and was worried about his incontinence. His fear of choking was too much for him to enjoy eating his food, cut up as it was into tiny, almost indistinguishable bits, and his other Parkinson’s symptoms overwhelmed his ability to delight in his two adorable great-granddaughters. After five hours, miserable, he asked me to drive him back to his apartment.”

“The next morning he called me. In a trembling voice, he told me that ‘he didn’t want to continue like this’, and that he wanted to stop eating and drinking.”

This was not a quick decision on the part of Joshua Segar. He was losing the pleasure of being alive and he wanted to be able to have control over the manner and time of his death. He did some research and found a method to end his suffering that he believed would cause the least amount of pain for his family while allowing him to end his suffering in a perfectly legal way.

It’s called terminal dehydration or “patient refusal of nutrition and hydration” (PRNH) and is believed to be a commonly used method for a person to end their life. Statistics are nearly impossible to find, but there is a great deal of anecdotal evidence from health care professionals that terminal dehydration is relatively common.

This writer, a registered nurse, has cared for a number of people over the past 30 years who have chosen this way to end their lives. The public perception of withdrawing food and water is one of great suffering. The reality is quite different. Most people who stop eating and drinking in an effort to end their lives die peacefully and are given the time to say goodbye to friends and family.

According to Ira Byock, M.D., one of the most respected experts in hospice and palliative care, writing in a 1995 article in the “American Journal of Hospice and Palliative Care”, “The general impression among hospice clinicians that starvation and dehydration do not contribute to suffering among the dying and might actually contribute to a comfortable passage from life. In contrast the general impression among the public and non-hospice medical professionals is that starvation and dehydration are terrible ways to die.”

Byock goes on to explain, “A more extensive review of the scientific literature relevant to starvation and dehydration appears in an article by Sullivan entitled, ‘Accepting Death without Artificial Nutrition or Hydration’. Published studies of healthy volunteers report that total fasting causes hunger for less than 24 hours. Ketonemia (the burning of the body’s fat stores) occurs and is associated with relief of hunger and an accompanying mild euphoria. When ketonemia is prevented by small feedings hunger persists, explaining the obsession with food commonly observed during semi-starvation occurring in times of famine or war. Animal studies also suggest that ketonemia may have a mild systemic analgesic effect. Experimentally induced dehydration in normal volunteers may report thirst, yet this sensation is consistently relieved by ad lib sips of fluid in cumulative volumes insufficient to restore physiologic fluid balance. One study of healthy subjects suggests there is a decrease in the severity of experienced thirst associated with older age.”

Another critically important aspect of terminal dehydration is that it does not require professional help and it does not trigger any legal issues. As Byock explains, “Unlike physician-assisted suicide, refusing to eat or drink is a purely personal act. While it may require information, the decision obviates the need for physicians, nurses or other agents of society to participate. After adequate discussion, and in the context of continued caring, at some point the patient’s choice becomes ‘none of our business’.”

Adrian collected his thoughts after hearing his father’s desire to end his life and wrote, “When dad told me of his desire to die by stopping eating and drinking I was shocked, but I knew I had to take him seriously and I knew right away that he must have been thinking about this for a long time. Although his Parkinson’s had caused several short-term memory issues, his ‘big picture’ thinking had always been and was still in superb shape. I told him that I took his desire very seriously, but we needed time to understand the implications, and we wanted to support him to the best of our ability, and we needed to learn what that support might entail. I asked him to wait while we did this research, and he agreed. He asked me to work as quickly as possible.”

“For the next two weeks my wife and I worked hard. We discovered that dad’s desire is called Voluntary Terminal Dehydration (VTD), that it is legal throughout the U.S., and, provided that the requestor is competent to freely make the decision and is not clinically depressed, VTD is medically ethical and should be supported with appropriate palliative care. We also learned that VTD, when supported with palliative care, seems to involve minimal discomfort.”

“After discussion, including a session with dad alone, Dad’s GP, neurologist, and cardiologist all supported his decision, and his GP authorized hospice care through the Visiting Nurse Association and Hospice of Vermont and New Hampshire.”

Adrian’s sister Alison reacted differently to her father’s decision. She is a social worker and said that her father’s decision was ethically problematic for her as a daughter and a social worker.

Alison also believed that there was a high probability that her father may have been depressed and she felt he should have been treated for depression before carrying out his plan. She wrote a letter to her father asking him to try anti-depressants and to see Parkinson Disease experts before going through with his plans for death.

She may have never fully come to terms with the plan for terminal dehydration but she respected her father’s courage saying, “I think my dad was incredibly brave to do what he did, whether he was depressed or not.”

In response to her letter to her father he wrote back,

“Dear Alison,
   Thank you for your nice letter.
   I do not want to take anti depressants.
   I want to carry on with my plan to end my life soon.
   I love you deeply with all my heart.
Love, Dad”

Joshua Segar’s last meal was his favorite, calves liver. His own personal last supper was the last time he ate or drank and he died one week later. His family was comforted by the care they all received from the local hospice, visiting nurses and private caregivers.

Alison noted that when her father made his final decision, “… he became animated, as if he was going on a trip. He called friends and relatives of his decision.” Joshua received necessary comfort care with low doses of morphine and ice chips to soothe his dry lips and mouth.

Byock has had many years of experience with death and dying and his perspective is particularly relevant in the Segar family’s situation. “Clinically, for a number of people at the very end of life, the decision to refuse food and fluid may not arise from depression or emotional denial as much as from a felt sense of ‘being done’. Most such persons I have encountered one way or another expressed a sense that eating or drinking were no longer relevant to their situation. They were far along in a process of withdrawal, having turned their attention inward or ‘beyond’. Even here the option of PRNH has important advantages over complying with a patient’s request to be killed, for it allows the clinician’s attention to remain focused on relief of suffering — physical, psychosocial and spiritual. It requires — or frees — the clinician to remain vigilant for treatable depression and to remain, in humility, open to the possibility of unexpected opportunities for the person to again discover value in the life that is waning.”

The Segar family said they never noticed that their father experienced discomfort as he died. He became weaker and after three days he drifted into his final sleep. Alison was with him when he died and she said, “It was peaceful and it was beautiful.”

Look back to look forward

Janus-VaticanFrom September 2002 through November 2009 I kept a journal, writing each day before going to bed. Every once in a while I’ll pick one of the five thick notebooks I filled during those seven years and read some entries at random.

Why do I do this?

I don’t revisit my journals to immerse myself in my past. Back then, I wrote to capture and reflect on my experience while it was still fresh, to explore how I responded to and felt about the day’s events. I didn’t write for posterity, and there are many raw experiences in these pages that are painful to recall.

Instead, I dip into what I wrote to compare where I was then with where I am now.

Sometimes I discover that life circumstances have changed. Perhaps I’m no longer impacted by certain issues that once preoccupied me (e.g., my financial situation has changed for the better.) Perhaps some issues are still part of my life, but my response to them is different (e.g., speaking in public no longer scares me as much as it once did.) And perhaps I’m aware now of issues that were absent from my journals (e.g., the implications of growing older.)

Whatever I discover, when I look back at what I used to think and do I receive important information.

Often I discover that I am continuing to change and grow in specific ways. As someone who wants to be a life-long learner, someone who doesn’t want to be “stuck”, that is good and encouraging information to have.

I also notice that certain aspects of my life haven’t changed significantly. Frequently, that’s because they are core aspects of who I am and the world I inhabit.

And sometimes, I become aware that I’m stuck in some pattern of behavior or response that I’d like to change. That’s good information too.

Look back to look forward. At the end of a peer conference, a personal introspective allows participants to explore new directions as a result of experiences during the event. On a longer timescale, old personal journals (or any records of past personal introspection) can be a great tool for learning about ourselves and mapping our future path on life’s journey.

Creative Commons image of Janus courtesy of Wikipedia

Are you waiting for permission for your mission?

Stephen Jenkinson
Stephen Jenkinson

On Mission

“You exist as a consequence of people seven generations ago who were willing to proceed as if a day would come when you and yours would be in the world and they’d be long gone, and you somehow picked up an ember of that and safeguarded it until it caught a spark. And maybe that turned into your life’s work, but you can’t claim to be the author of it. You’re on the receiving end, and your job is to have the humility of a broken-down jalopy. So you’re not going to make a lot of claims for yourself, but you can say you have a sneaking suspicion this has been around before, and you’re a part of some kind of tradition.”

On Permission

“…when I was working in palliative care…I realized that if I was going to serve these dying people well, then I couldn’t wait for anyone to ask me to do it.”

Both quotes are from an interview with Stephen Jenkinson, in The Sun, August 2015.

Are you waiting for permission for your mission?

How I got on my feet and danced again

On the stage at PCMA ECHere’s a story I told at the opening of the 2015 PCMA Education Conference:

“The EduCon organizers asked me to say a little about the conference format, and I thought about when I was a teenager, and loved to go to parties and dance. Then something happened, I don’t remember what it was—probably something incredibly embarrassing involving a girl I liked—and I became self-conscious and stopped dancing.

I stopped dancing for 40 years.

In 2003 I go to a workshop, and if you had told me beforehand that I would dress up in costume there and dance, solo, in front of an audience I would have a) said you were crazy and b) skipped the workshop.

I’m very glad I wasn’t warned, because at that workshop, when I experienced dancing again, I remembered that I love to dance—and I’ve been dancing ever since.

If I had been reminded at the workshop that I used to like to dance, it wouldn’t have made any difference.

All the lecturing in the world wouldn’t have shifted my belief that I really didn’t like to dance any more.

I had to experience dancing again.

I had to get on my feet and dance!

Now, we’re not going to ask you to dress up and dance at this conference—unless you like doing that, in which case we’ve got the Fort Lauderdale Pool and Beach Party tomorrow night!

But what we are going to do at this conference is to give you plenty of opportunities for participative engagement—to experience things that we think may be useful for you in your lives and work.

In addition, this conference is full of experiments with a variety of learning environments and methods. We are proponents of risky learning—Sarah Lewis & Mel Robbins—will be exploring this in their sessions.

And, in our crowdsourcing experiment tomorrow, you’ll get to choose what you want to learn about, discuss, share, and connect about.

So our hope and desire is that, at EduCon, you will:
engage;
be open to your experience, with a willingness to learn from each other; and
be a resource to your peers.”

It was my hope that sharing a revealing story in front of a thousand people at the start of this conference would model openness amongst attendees for what followed. Based on the feedback I received during the event and my observations of the level of interaction and intimacy that ensued, I think my hope was realized.

Alone in the woods with my MBTI

Vermont foliage 1425557604_b18c1c3fde_zI’ve spent the last 10 days living alone in the woods. (No, not what you might be thinking: my home is surrounded by fall foliage, and my marriage is fine.) Quite a contrast from the previous week, which featured two cities, two events, and two meetups.

If you’ve met me, you’ll know that I love to schmooze in company, and you may wonder if it’s hard to be suddenly on my own. Not at all. Although I love bringing people together, I also am comfortable living by myself for a spell, talking to no one except for an occasional phone call.

This makes sense in terms of my testing on the popular Myers-Briggs Type Indicator® (MBTI®.) As I’ve shared before, I score pretty neutral on the extravert <–> introvert axis of the test. Someone testing highly extravert prefers to draw energy “from the outside world of people, activities, and things”, while an introvert prefers to draw energy “from one’s internal world of ideas, emotions, and impressions” [all quotes taken from”Introduction to Type in Organizations“, Krebs Hirsh et al.]

What the MBTI doesn’t provide is any indication of the intensity of anyone’s aspects. Because MBTI is about personality preference it’s perfectly possible for someone who tests neutral on a specific axis to have strong desires or abilities around the poles of each test dichotomy. As it turns out, I am comfortable not only when I’m socializing with others, but also for extended periods alone in creative, thinking, and feeling modes—I enjoy and need both states.

Consequently, a neutral “weak” score on an MBTI axis may indicate greater flexibility and comfort with the range of preferences associated with that axis. And those of us with a strong preference on axes (in my case, Intuition and Feeling) may have a harder time communicating and working with people whose preference lies at the other ends of the scale—for me, these are folks who prefer Sensing (“taking in information through the five senses and noticing what is actual”) and Thinking (“a preference for organizing and structuring information to decide in a logical, objective way”).

While my clear preference for MBTI’s Intuition and Feeling axes feeds my energy to pursue the congruence, facilitation, and consensus that inform my mission to improve what happens when people meet, its shadow side can be increased difficulty in relating to people who prefer sensing and thinking modes. One’s strengths invariably point to one’s weaknesses. In general, there seems to be a tradeoff between well-roundedness and drive.

Meanwhile, I’ll continue to be alone in the woods. Well, until Celia returns later today…

Photo attribution: Flickr user paulmoody

Stuff breaks all the time

repair bicycle 9506355716_32325afc2b_bWe live in an imperfect world. Life doesn’t go according to plan. Entropy increases. The terrible has already happened.

In other words—stuff breaks all the time.

We need to remember this, and keep one thing in mind.

It’s the repair that’s important.

Photo attribution: Flickr user pedrosek