“Die Wise” Book Review

After reading the book Die Wise, by Stephen Jenkinson, I wrote a review for the professional journal for Hakomi therapists, called The Forum.  It’s an academic journal, so I am pleasantly surprised that they accepted my submission and published it.

Here it is.  If you wanted to read the book, maybe this will inspire you to do so, or give you enough that you can move on to whatever is next in your reading pile.

Book Review

 Jenkinson, Stephen. (2015). Die wise: A manifesto for sanity and soul.  Berkeley, California: North Atlantic Books. (382 pages).

Jenkinson, Stephen.  Griefwalker: a film about the redemptive power of deep love for life, when life glimpses its end. Produced by www.alivemind.net. DVD, 70 minutes.

Jenkinson, Stephen. How it all could be: A workbook for dying people and for those who love them. Published by www.orphanwisdom.com. 37 pages. (“Something that can be useful in the sorrowing heat of the moment, and in the time before and after”).

 

In early February of 2015, a doctor told me that I had Stage IV Kidney Cancer, and that I had about 2 months to 2 years to live. In my travels in this new-to-me realm of “imminent death,” I encountered Stephen Jenkinson and his book Die Wise. I devoured his eloquent language, his wisdom and experience that he shares so thoughtfully and carefully. His teachings fit seamlessly into the Hakomi Principles and deserve to be introduced in the Forum for others who may be approaching death, or those who have clients, family or friends who may be.

Jenkinson has a MA in theology from Harvard University and a MA in social work from the University of Toronto. He speaks around the world, is consultant to palliative care and hospice organizations, and is the founder of the Orphan Wisdom School in Canada.

For Jenkinson, high tech health care has become an undeclared war on dying itself. “If you can, you should” (p.23) is the mantra in our death phobic culture in North America especially, meaning you should do whatever you can to continue living, no matter what, no matter how much violence you do to the dying person, their body and their very soul. Dying wise goes against attempts to control and domesticate dying including palliative care. It is a way of redeeming our way of dying that is the right of everyone, a moral obligation, a political act, an act of Love, spiritual activism, and yes, immensely hard labor. Therein lies his manifesto.

Instead of a sedated, managed, defeated dying, (Cope, Hope, Dope) Jenkinson is talking about purposed, meaningful dying that roots us into our life in a way that nothing else can do. He doesn’t say not to use pain meds if they are needed, but to be mindful of each choice, each prayer, and what it accomplishes in a death phobic culture.

So, what would dying look like from a Hakomi perspective? We seek non-violence, organicity, a body-mind connection that is trustworthy, mindfulness in and of the process, and unity. That is precisely what Jenkinson is teaching once you read between the lines.  He also includes: village mindedness; caring for our ancestors and our dead, weaving them in our lives; breaking the trance of our death phobic culture; seeing dying as an angel, rather than an executioner, something you live, wrestle with, share and can teach to others.

Die Wise is not an easy book to read, especially for someone with a terminal diagnosis. He offers not even a thread of wiggle room. For example, people who are dying often ask for “more time.” He thoroughly demolishes that idea. If you get more time, you get more time to die, more death, “temporary citizenship in the Land of the Living.” (p. 133) He titles one chapter The Tyrant Hope. What he means is that if you are living focused on hope, you are living in the future, and are not present to your life that you actually still have. His alternative is to live hope free, which is a subversive move towards lucidity, a revolution of sorts.

He talks about Word Voodoo: if you say it, you can make it (death) happen, so no one talks to the dying person about their approaching death. No one will name it for fear they might make it happen. I’ve walked with some good friends during their dying time who carried this view. There was no way to be with them in any level of honesty and devotion. Jenkinson offers no place to hide.

Even the notion of “quality of life” as a deciding factor in dying is up for grabs with him. He believes that quality of life is a principle strategy in our culture’s project of dying–not dying. It enforces the addiction we have to competence, mastery and autonomy. It doesn’t serve the dying, who are anything but competent, and quite literally out of control. “If there were no palliative care, what would the arc of dying look like?” he asks. What if we respect the process itself, and listen deeply to what might be needed here? This is right up Hakomi alley.

Our culture says, according to this man who has worked in the “death trade” for decades, that we can die not dying. Dying, instead, in his view, must be allowed to change literally everything. As a person living this through right now, I have to say it really, really does change everything. Staying mindful to this cataclysmic shifting is challenging, and hard work. Jenkinson is a trustworthy guide.

The wisdom we seek can be found in suffering, from being broken-hearted, which for him is a skill. Wisdom comes from learning grief, and from practicing grief. Who asks us to be fulfilled in our dying, or to even thrive in our dying, or to be good at it? We need a faithful witness to our dying, not someone who will banish what is hard and demanding.

In Ron Kurtz’s language, we need someone with Loving Presence who can make being vulnerable and incompetent, safe; someone from whom we can receive comfort; someone who is not there to fix what cannot be fixed; someone who is aware that death goes beyond just humans, to trees, rivers, stones, even mountains. We need to proceed as if there is merit in knowing death well.

Jenkinson asks huge questions with a rare precision. He asks the question: When in human history did the death phobia begin? It’s not so in other cultures. How “natural” is it to be afraid of dying?

What if this insistence on dying being a trauma is the traumatizing thing about dying in our culture? High tech dying turns you into a victim. That’s not true for all cultures. In my opinion, high tech tends to do this to birth as well.

A large portion of Jenkinson’s book is about our dead: they are “a rumor, unclaimed and unknown.” Their bones are somewhere else. It is the orphan story of the Americas, which is a type of homelessness. The alchemy of belonging comes when we plant our dead and their bodies sustain that place. In our history we have slavery, people fleeing, flight as culture, no bone yard in common. People internalize “home” when they are homeless. That leads to a culture of autonomy, self-sufficiency, lonely multi-cultural cities. The outcome for the dead is, mostly, unknown. Even our Gods are homeless, not of a place. Even our foundational story, the Garden of Eden, speaks of the loss of home, the loss of eternity, of death. Indigenous cultures tend to have Gods who live on the same land that they do, embedded into the very earth.

When my mother was dying in our home, about two weeks out, she suddenly declared that she wanted to go home. No amount of saying that this was her home now, no amount of saying she was going home in her dying, appeased her. She had told me my entire life that she wanted to be cremated, and that’s what we had planned. But now she wanted to be buried, she wanted to go home, to Ohio I guess, where her family and her ancestors were buried.

Part of our fear of dying for Jenkinson is that the dying begin to understand that their very reality is pending. “They are on the Lost Nation highway, even as dying, not yet dead,” disappearing from the memory of those left behind. (p. 279) Amnesia is built into our care of our dead. They don’t need us anymore. They are mysteriously completed and self sufficient, above the fray. That is power, in a culture like ours. How will I be remembered, if at all, I wonder? Do I just disappear from life, from the human sphere into the realm of “the dead” that almost no one even thinks about?

Now that I am dying, I find myself turning to face those from whom I come, my ancestors, my own “dead,” trying to learn from them. We don’t treat our dead with any degree of hospitality, usually.

“Dying means to be wrecked on schedule.” (p. 300) Being sad is not being depressed, not something to fix. We need courage to stop trying not to die, and to relax into it. Dying can be achieved, not endured as we tend to see it. It can be learned. We can die wise. Dying is the time to untie the links of strength and competence that bind us to our bodies. Stopping eating is to “vote no” for keeping on. (p. 309) It turns the tide.

To die wise, we can “faithfully report on our ebbing days, the sway of it.” (p. 310) My husband will likely not have an escort when it’s his turn, a sorrow that brings me to my knees. Children need to know, too, to begin to get a feel for it.

“If you are attending a death, bring a soft focus, a slow gait in your thinking and your speech. Stay willing, be supple in your understanding, ask your eyes to stay open, wonder what is needed of you.” (p. 314) As Hakomi therapists, we have practice in working in the non-verbal realm, so this will help a great deal.

Dying people are busy trying to find their way out of their bodies and out of their lives, and there is scant language for this. (p. 315) I remember my Mom late one night describing being in a tunnel, about half way through. She had a new doctor “on the other side, who had done all the paperwork,” and now she wanted to know if she could turn around and come back. Exhausted, I told her that I didn’t know, but I would see her in the morning, or not, depending on her choice. We said good night and goodbye. And she was all sparkle in the morning; she did figure it out. She lived another few months after that. When my beloved companion David died, he was radiant and said that he could see the light all around.

“When dying is understood as justice, mercy, a sign of compassion that is stitched into the fabric of life itself, that can bring us into a world-loving, community-serving love of life.” (p.350) Then we can die wise.

“Grief isn’t an intrusion into the natural order of things. It is the natural order of things.” P. 367. It’s the ability of seeing the story of the thing, the whole story. We are grief impaired, grief illiterate. We learn instead how to manage it, resolve it, get over it. It’s not just the feeling of sorrow, or guilt. It is knowledge and understanding that each of us is obligated to live, for our life. “How you die grows kinship, a chance to practice unlikely gratitude, a way of loving,” and love is a way of grieving. (p.378) Jenkinson steps into the Unity principle easily and often. He is an unusual man, with language that delves deep into the heart of things, a poet, a storyteller, and a fearless angel of death.

 

The DVD Griefwalker is a lush, marvelous video of Jenkinson and his work, his language, his teaching. Again, there is no hiding place, no way to avoid death in this. He helps us take a long, deep drink into what it is and what it could be, how we got here, and what needs to change for it to be more organic.

His workbook, How It All Could Be brings a whole series of questions to the table. Here is his dedication:

This was made for all those who have come to me questioning, sorrowing, fighting and trying to lay low while their lives go as lives go, for the families and friends of those who didn’t live to see this done, for all those who asked for it. It was made with gratitude to the teachers and great rememberers out on the dangerous and darkening roads, where it all lives.

It’s a study guide to Die Wise, a shower of questions that incite deep reflections, conversations with shared ideas, delving deeper still into this concept, this manifesto of dying wise. He teaches that you wrestle the angel of death “by grief, by wonder, by courting uncertainty, by falling in love again with being alive, this time with the taste of its end strongly on your tongue.” It’s part study guide and part workbook, part meditation, and part kitchen table conversation. He wants us to work at this. It’s quite grand, and I recommend it to those who read his book.

As for me, I have only been using alternative medicine, and I am now, a little over a year later, a Stage III cancer patient. We don’t know what that means exactly, but I am learning to live hope free. I’m putting language to this journey in my blog www.SusanShawnAlive.wordpress.com. I keep my eyes open, and I’m learning how to die wise, as best I can.

 

 

 

 

 

 

 

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St. Benedict Chimes in

Chiming In from the 3rd century or so
Chiming In from the 3rd century or so

St. Benedict informs my life with Eric, my husband who lived in a Benedictine monastery for 18 years, starting in high school.  Benedictines are taught to “keep death daily before your eyes”; (Chapter 4, vs. 47) just one line in the whole of the Rule of St. Benedict. Some monasteries within this order will keep a human skull in their dining area, as a reminder.  Always, there is one shoveled and open grave. It’s a both/and teaching.

What’s not so clear to me, and depends on the translation and edition you might be reading, is why this is part of their teaching.  From what I can tell, on the surface it is a method to keep monks from Sin, a word that causes me to have a brain warp when I see or hear it, packed to the gills with judgment and fear and some sort of dark Catholic realm of desolation, my mother’s birthright as a French Canadian, and my father’s atheistic dismissal.  If you keep death daily before your eyes, the idea seems to go, then you will be less likely to step into the horrors of sin, because if you can die at any moment, you might die in sin, which is a big no-no in their world.  For me, I don’t tend to buy this for a minute.  God is way bigger than this notion.  Way bigger.  Because these folks tend to have a very hollow, narrow definition of sin itself.  Like too much laughter, for example.  Yup.

A friend of mine, a nun, described Sin to me once in a way that actually made sense.  She said that sin is anything that you do, internally or externally, that keeps you from your own inner core of goodness and spirit, that separates you from your experience of God, or the Buddha or whatever you want to call it.  From the shimmer, for example.  From joy and from love.  From Grace. So, I wouldn’t like to die separated from the shimmer.  I get that.  I just don’t buy all of the Rule, it’s oppressive.  Thank God Eric left.

So, I’m back to my tightrope of living/dying, holding both at the same time, my koan.  My belief is that St. Benedict intuited this fundamental wisdom and built it into his Rule for communities seeking God, leaving it to us to unpack.

Why does this matter?  I have had several dear friends who, approaching death, refused to acknowledge it, and believed that by denying their death, they would somehow be assisting or ensuring their longer life, that intention was everything. No one was allowed to harbor the idea that they might be dying, and still visit.   They each died with lies and falseness all around them, fierce to the end, giving it their all.

Some of the books I’ve been reading lately, here in cancer land, do suggest that one “decide to live” and not even allow the thought of dying to enter one’s mind; a single minded focus on living, only.  It’s the idea that the mind controls the body and one ought to be able to do this, to literally stop one’s dying based on the power of one’s intention.  It’s a powerful idea, and I understand why my friends took that route.

There is an element of aggression in this, however, for me.  To follow the principle of non-violence, it seems to me that I need to lean into the very unfolding itself, accepting not knowing from one moment to the next, both living and dying simultaneously.

By opening my heart to balance, to homeostasis, to equilibrium, to the slack tide, the Tao of dying (the yin/yang of it) together with St. Benedict’s blessing, this fits me the best.

For now, anyway.  Koans are tricky.

How could I not know I was this sick?!

IMG_0551How could I not know I was this sick?  Looking back, it’s pretty obvious to me.  This image of a person dragging himself through an ice field on his arms and legs, crawling for miles…I picked up this image in 2009 (!) during a collage prayer card day. My subconscious knew something was wrong, that I had burned out somehow.

Docs had told me back then that I had chronic fatigue syndrome.  It got worse and worse, year after year, until I could barely get through my day as a retired woman.  Finally had to hire some help cleaning our house, I couldn’t do it myself.  Mostly I felt embarrassed and tried to hide it, even from myself.  My world got smaller and smaller, as one beloved activity after another got dropped into the “I can’t do this anymore” bin.  My lower legs and feet began to swell and it hurt to walk even down to our mailbox at the end of our driveway.  No more walking our dog, Tara, on a regular basis.  Why didn’t I demand more assistance from Kaiser?  At a certain point, I was too sick. And before that? With chronic fatigue, there is nothing to do.  I accepted that diagnosis as being accurate.

In my journal from June well over a year ago, I reported “I think I am dying.”  By then, dying did not seem like a very long step.  However, I have a tendency to brush aside things like this report from myself, either by not listening or choosing not to respond.  I have learned not to entirely trust my conclusions. I saw all that fatigue as a deficiency in my own character.  This is a very old childhood pattern.  So, that report did not show up on my radar, internally, beyond those few written words.  It’s a little like a Facebook meme that you see one moment on your site and then it’s gone as new ones take it place.  It faded from view.  I kept crawling through life, slower and slower.

Deeper underneath there is a voice that explains, “You were so tired and depleted that you simply could not gather up the strength to try to deal with that other part that warned you might die.”  A deep shattering kept occurring, evaporating my will to live. Dying seemed like a good thing.   A frail voice would pipe up: “Who cares? You’re not worth the effort. Why bother.  I won’t try and then lose.” It’s a voice that sucks me down fast. Very old voice. Depression is one of the key symptoms of kidney cancer.

Sometimes I ask myself: how does this cancer thing work?  There is a place where the will to live connects (lightly, in my case) with the evaporating part.  It reminds me of when the tidal waters come up the Willamette, and meet the waters coming off the Cascades – there is a moment when the waters stop, and the surface is like a mirror. They embrace with a million little silvery arms. Then tiny little wavelets appear, the water turns to mercury, and then the river turns back the other way, back upstream.  The master ebb and flow, twice a day around here – a potent, magical, fleeting moment.

I wonder if within us, we each have a tidal effect of the will to live and the longing to die.  As long as they are in balance, we have health.  Several times I recall my wanting to die, the evaporating part, showing up in my awareness. This cancer has been growing for at least the past six years or more.  The cancer, to some extent, feeds on me feeling despair of ever being well again. It is a lethal feedback loop. I have been out of balance.

Is it possible to simply turn that imbalance back to balance, and let the body slowly readjust?  Would the cancer either slow down or better yet, go away?  Turning the tide of cancer. I like it as a metaphor for healing.  I can’t seem to relate to the more common ones of war… I am seeking a natural key to this process, one that is non-violent, that I can watch with mindfulness, knowing that the mind and the body affect each other intimately, profoundly.

This doesn’t yet solve my underlying question: did my feeling like dying come after living with the cancer for awhile and is therefore a symptom, or did that feeling actually cause the cancer. Or both.

Reading The Emperor of all Maladies: A Biography of Cancer, by Siddhartha Mukherjee, he reports that Claudius Galan, a Greek doctor from AD 160, wrote about the black bile that is cancer.  Galen links the word Melas (black) with Khole (bile), hence melancholia.   For him, depression and cancer, psychic and physical diseases of black bile, are intertwined.  He proposed “that cancer was trapped black bile, static bile unable to escape, and thus congealed into a matted mass”,  just what I studied in Chinese Medicine: stagnation can cause disease. This feels accurate to me.  And is nothing that my oncologist can affirm or acknowledge or do anything about.

I’ll be watching to see what is stagnate around me and within me.  What needs to be freshened up, turned inside out, removed from my life, embraced differently? How can I let the depression energy escape and/or stop forming?  Selling our house, downsizing and moving to Rose Villa, an unusual retirement community, has started things moving.

Looking for the shimmering, too, and letting in that awareness as often as possible.  I tell friends “I am swimming in a sea of shimmering grace.”  I just have to remember that, dial it in.  Remember the View.

I’ll be asking myself these questions for awhile yet.