Coming Clean

Writing this particular post for months.  It’s a tough one, for me and probably for anyone brave enough or bored enough to read it, too.  It’s about meditation and confession and humility and becoming friends with ourselves and vulnerability, just for starters.    I’m willing to bet that there is a common thread, however, for those of us who are on borrowed time, and know that down to our bones.  Here goes.

Almost every cancer patient is given or finds a list of things we can do for ourselves as we make our way through cancer land.  Meditation is often not only on the list but if not at the top, nearly there, for pain control primarily and as a way to deal with anxiety and depression.  Buddhists teach meditation and mindfulness as a way to “make friends with ourselves” and to develop skillful means as a spiritual path.  Quakers know that when we are silent and listen deeply, we can hear the “still, small voice of God” within.  Sounds great, doesn’t it!  Yup.  It is.  Mostly.  Except when it isn’t. Great, that is.  It can be excruciatingly difficult, also.

This starts with a little story.  When I was working full time, providing therapy for others on multiple levels decades ago,  I used to take a silent retreat every 3 months, for at least one week, with a group of Zen Buddhists who were also Catholics.  We sat in complete silence for 8-9 hours a day, not making eye contact, not reading, not speaking, just sitting in meditation with walking meditation every half hour, all day for about 7 to 10 days, with mass in the morning and a zen talk every evening by our roshi who was also a priest.

One day, I was noticing my own mind – because what else was there to do, really?  No TV, just my own mind unrolling movies in front of my awareness, my witness.  I noticed that  day that I was impatient, irritable, judgmental and stubborn.  I could see this as I played out little movies of memory or thoughts, in my mind, and began to name what I saw.   Great.  Next half hour, I noticed I was scheming, anxious, smug and opinionated.  Yup.  The list got a little long, so I went upstairs to my room, and started writing these darling traits down so I could remember, in between our sitting sessions.  It went on that day: domineering, victimized, possessive, suspicious, snide!

Truly, I was horrified!  Shocked.  I’d run upstairs and add more to my growing list, hoping no one would ever know.  Next day, same shit:  self-righteous, angry, pushy, manipulative, aloof, greedy, evasive.  After more of this: insolent, bitter, arrogant, conniving, seductive, snotty… I started to laugh!  It just got so funny!  Maybe you had to “be there”, but it was hilarious!   Still makes me laugh.  Sort of.  Fussy, fearful, murderous impulses (way down, hidden from sight, but I saw it like a flutter of something scary in the dark forest) grandiose, snobbish, rash, self-absorbed… on and on.  To this day, I am still adding more charming aspects of my own being, my own history, when I catch them;  being prejudiced about one thing or another are especially hard to see, elusive.

Some might say, “Hey wait, Susan!  You are much more than all that, what about all your positive traits, too?!”  Wanting to somehow dilute these insights, perhaps, or to make me feel better about myself, to take away the sting.  Maybe this makes some uncomfortable.   I have a page of positive traits, too, not to worry.  But this part of the meditation process doesn’t exactly get a lot of press, as far as I can tell.  Wonder if the doctors really know what they are recommending.  Want to bet? Because this is what eventually happens if you actually meditate.  A lot.  Probably different lists…

But here’s the thing.  I have finally made friends with myself (Did I say sullen, severe, scattered, punitive?)  and in the doing of that, joined the human species, warts and all.   Does all this lower my blood pressure any?  Not so as anyone would notice.  I wonder about AA and their thing about “taking a fearless inventory”.  Perhaps this is what they are referring to.  Certainly this has aspects of the great sacrament in the Catholic church, confession.  If done with mercy and humility, there is wisdom there.

So, if this is such great medicine for cancer patients, how do I transform the internal horror of such a freaky show into something inspiring and useful?  In other words, why in the world would anyone want to become so vulnerable? Why fucking do this!!! (Using bad language, undisciplined, cutting, intolerant) (Rebellious)

That question, dear ones, is why it’s taken so long to write this post.  (lethargic, procrastinating, making excuses) (Judgmental) Here are some answers that have emerged in the past 3-4 months.

William Stafford has a great line in one of his poems:  “If you don’t know the kind of person I am, and I don’t know the kind of person you are, a pattern that others made may prevail in the world.”  Right now, we have others prevailing in the world who are basically insane, so it’s becoming more and more urgent that we not only know who others are, we also know who we are, at the deepest level.  I believe this to be so urgent, I’m willing to share this story.  It is from the very bottom that we are able to create and describe our own internal moral compass.  Handy when there are no maps. Or when our so-called leaders have no morals at all.  Or when our own teachers are no longer around or it just gets too hard to cobble stuff together anymore.  And there is death, lurking.  Time is running out for all sorts of things, not only for me and perhaps for you, but for the planet and all beings.  Developing the capacity for wisdom and compassion is needed.

Pope Francis has a new book out, titled “The Name of God is Mercy“.  Pope Francis is the real deal.  He has this to say:  “Justice on its own is not enough.   With mercy and forgiveness, God goes beyond justice, God subsumes it and exceeds it in a higher event in which we experience love, which is at the root of true justice.”  If we are longing for true justice (not vengeance) and if we cannot accept ourselves with mercy and forgiveness, how can we offer that to anyone else? Or even to conceive of what justice might be?  Or care?

For Francis, the teaching is that we must be involved, we must be moved, we must feel compassion.  “This kind of compassion is needed today to conquer the globalization of indifference. ”  And meditation is a great tool to develop that compassion.  Which leads to wisdom, and developing a moral compass that is trustworthy and sane, a profound equanimity.

I am just learning how to embody this.  Mostly I fuck up and stumble around.  But the thread is strong.  Kidney cancer is riveting and debilitating, but its also a great teacher, keeping me focused and aware.

After decades of meditation and other practices, and getting to know death pretty darn well, at times there is a moment, an opening, and I see through all of this, the whole thing, and see and feel the shimmering grace that’s always there, the supreme joy.

 

 

 

 

 

 

 

 

 

 

 

In the Realm of Hope

Hope tends to play a role for most of us who live with a terminal diagnosis, whether it is acknowledged or not.  It’s there, either looming large and constant, or laying in pieces on the floor, fragmented and fragile.  Or somewhere in between.  Upfront or out of sight, out of mind, lurking.  Or leading us on into what’s next.  I think of myself as being essentially hopeful.

It wasn’t until I got into the book Die Wise, by Stephen Jenkinson (from the video Griefwalker) that I began to ponder how hope lives in me these days.  His third chapter is titled The Tyrant Hope.  My very first thought was “What the fuck?”

My second thought was “Fuck you!”

After that, I settled down to read what he has to say.  As a worker in what he calls the death industry (hospice and palliative care), he writes “Sometimes you have to wonder aloud whether hope is all it’s cracked up to be, and then wait for the pieces to fall.”  And so, they are.  Falling, that is.

In his world, people with a terminal diagnosis generally hope for more time.  Hope is the “conjuring chant taken up in the name of compassion.” However, “More Life is mostly More Death.”  Hope is “an anesthetic of the spirit.  It ensures that it will be too late to learn how to die, in a death-phobic culture.  Dying in a death phobic culture is traumatic.”  Hence, “Cope, Hope, and Dope” is what the allopathic, Western world has to offer the dying.   In his world, Hope is a vote for a future, a mortgaging of the present.  As long as you are hopeful, you are never in the land you actually hope for.  By that, he means that you are always living down the road, not where you are.

Hope is not life, and hopeless is not death and depression.  It’s a false choice.

“The alternative is to live your life and your dying hope-free: a subversive move towards lucidity.  A revolution.”

Well, okay then.  As a practicing Buddhist, I can practice letting go of hope and moving more strongly into the present, through meditation and yoga and so on.  Got it.

Hope

Then along came the next book, Mystical Hope, by Cynthia Bourgeault, an Episcopal priest who is lucidity personified.  And her book is an entirely different take on the concept of Hope.  The subtitle is Trusting in the Mercy of God.  If I hadn’t already read one of her very fine books, I would have passed this one by.  However, the thing shimmered at me on Powell’s website, so I ordered it, a small gem.

Her whole book leads to this paragraph:  “Hope is not imaginary or illusory.  It is that sonar by which the body of Christ holds together and finds its way.  It takes enormous courage to live the Christian gospel..to move forward in hope. ” But it takes her whole book to get you there.  If you are willing.

Hope, most people feel, can help them live, providing a surge of energy that would make life feel possible again.  Going from a Stage IV to a Stage III cancer has certainly opened up my heart again to hope. Here she agrees with Jenkinson: ordinary hope lives in the future, seeking some kind of good outcome.   However, what Cynthia is addressing is about finding a deep and steady current of life that is the source of hope itself, a theological journey instead.

Mystical Hope has nothing to do with a good outcome, with the future.  It has something to do with presence, the experience of being met, held in communion, by something intimately at hand: a direct encounter with Being itself. It brings strength, joy and satisfaction, producing them from within.  If we rush into the future or stay rigidly focused there, we miss the hand of God who can only touch us in the now.

And that is, I think, what Jenkinson is also teaching, only with vastly different language and context.

Cynthia goes on to make a distinction between Grace and Mystical Hope.  For her, mystical hope is not an extraordinary infusion, (such as we tend to think of with Grace) but an abiding state of being, developing a permanent connection to this inner wellspring, becoming a body of hope itself.  It’s connected deeply to Mercy , “God’s innermost being turned outward to sustain the visible and created world in unbreakable love”.

Mystical Hope is for her an electromagnetic field of love.  “It warms, it fills, it connects, it directs.  It is the heart of our own life and the heart of all that lives.  Hope’s home is at the innermost point in us, and in all things.  It’s not a feeling that results from a happy ending, but lies at the very beginning, a  pulse of truth that sends us forth.  When we are attuned to this, hope fills us with the strength to stay present.”

I tend to think of this as radar, my own radar.  Once, having taken too much cannabis oil, I found myself flying through time and space, no up and no down, no right or left, no way to navigate, no vistas, just space.  It seemed that I needed to make micro decisions every few seconds, and had no way to know how to do that.  It was infinitely scary.  My notion at present is that death somehow holds moments like this, and we need to have a way to safely find our way.

If I consider Mystical Hope as the Source of Love itself, then simply attuning myself to this deep place would be enough.

Simply.  Well, maybe not simply.  So glad I have more time to do this necessary attuning.  My pieces are falling, but into place.

 

 

 

 

 

The end of Murk, for now anyway.

On a wet and breezy afternoon, leap year day, Eric and I sat down to talk with a new urologist/surgeon who affirmed, confirmed, announced that I am, in fact, no murk, a Stage III kidney cancer patient.  Not Stage IV. We peered at the CT scan, 6 eyes peeled, and could see what appeared to be lymph nodes between the aorta and the vena cava, but they appear to be normal lymph nodes that could be a little iffy, but yeah, mostly normal.  There is no indication anywhere that there is cancer in the right kidney, except that the first surgeon told us he had seen it there when he went up with a camera to try to zap the kidney stone, which, it is true, no longer exists.  That one is a mystery.

After talking it all through, we’ve decided to simply wait another 6 months for the next CT scan.  The first urologist/surgeon said a year ago that I had a 4% chance of living through surgery to remove my primary cancer of the left kidney.  He also said it appeared that the cancer had spread to my lungs, and to my other kidney, and was in the lymph nodes, so I would probably die in 2 months to 2 years.  This new doc said I had a 99% chance of living through the surgery, if I decide to go that route, and that it was “highly unusual for such a large kidney cancer to stay stable for one whole year”.  He agreed with the idea of waiting for another 6 months, with some trepidation because kidney cancer can “bloom” without any warning, and become life threatening quickly.  I understand that and live with that.

He refused to update the prognosis, or even comment on it, because “we never really know how long anyone will live or can live, and it’s better to leave it open ended.”  Yes!

It doesn’t hurt, ladies, that this doc reminds me of the new PM of Canada.  I’m old, but I’m not blind, as the saying goes.

So, Eric drove me to A Piece of Cake to celebrate with a vegan Irish Oatmeal vegan cake!

Instead of becoming complacent, my intention is to increase our efforts to remove this cancer from my body, to become a Stage II in 6 months.  We’ll see if it’s possible to do that, or at the very least stay stable.  If, and it’s a HUGE if, I decide to have this surgery, I want to be much stronger before I go in for that.  Chemo might follow that, which is daunting.  I’d prefer to kill this shit with joy!

Meanwhile, I stumbled upon a marvelous little jewell of a book called Mystical Hope by Cynthia Bourgeauldt, an Episcopalian priest.  I highly recommend it to those of you who are not allergic to Christianity at its finest.  Cynthia knows about the shimmer, she does.

Stay strong in your heart, and keep that channel open if you can.  I’ll meet you there.

 

 

 

Green Tara steps up.

Green Tara and I have been good friends for decades, she more constant than I.  Who is Green Tara?  The masculine Buddha cries a river of compassionate tears, and from that river emerges Green Tara, wisdom personified, one leg set down ready to protect, to intervene, to help.  Green Tara claims that she will continue to be reborn as a feminine figure until all suffering has ended.  She is, for me, a mixture of Mary and Sophia, the Christian image for wisdom, and so much more.

One of my stalwart friends, Renette, traveled to Tibet and Nepal years ago; I was to go with her and another, but I fell and broke my shoulder which then slightly crushed together.  I had to stay home, so asked her to bring me a Green Tara tangka, or picture.  Which she did.  Boy, did she ever! It’s hand painted by the head of a Tibetan tangka painting school in Kathmandu.  She shines and shimmers and keeps me company.

IMG_0753

At one time, I chanted over 100,000 mantras to her, counting on my yak bone mala which is like a Christian rosary only with counters, 108 beads.  Devotion is an alien concept for most of us in the West but for Tibetan Buddhists, it’s one channel or doorway into the absolute realms. It’s real. At some point, I participated in a Green Tara Empowerment and brought her along to be blessed.  Somehow or other, I developed devotion to Green Tara, so here I am.

Towards the beginning of July this year, after we moved to Rose Villa, I put my finger on her hand which is open, on my tankga, and prayed: “Help me!”  It’s like plugging into her unique channel or current, and opening mine up to her.  Boom! Electric sizzle ! Help poured into me on every level, completely blessing me through friends, family, resources known and unknown, pouring in to me.  I heard that it was going to take time, and to rest.  Staggering experience.  I’ve only recently decided to speak of it here. Lasted all of about one minute.

So, a month or so later, I decided to see if I could find a doctor of Tibetan medicine here in the Portland area.  Tibetan medicine is similar to Chinese medicine but coming from the Bon tradition in Tibet.  I asked many people. Nothing.  I asked my shaman friend who also put out the word, and was recently connected to a lovely young woman who is a student of Tibetan medicine, as well as Chinese medicine at the Naturopathic College.  She arrived at our cottage carrying water that she infused with a protective healing mantra, and a Medicine Buddha practice that is fairly simple. I need simple these days.

I fell promptly in love with her, of course.

Now, here’s the miraculous.  She is bringing to Portland a teacher of Tibetan medicine, a doctor who graduated from the Tibetan Medical College in Dharamsala, India.  She practiced for many years under Dr. Kunga Gyurme, the personal physician of the Dalai Lama.  She travels all over the world treating patients and teaching.

And I have a private consultation with her this Friday.  I am amazed, completely amazed.

And bow to Green Tara in profound gratitude.

Delusional?  Who cares, if it works.  I am not looking for my cancer to disappear in a cloud of magic dust, but seeking a way through this thicket with trustworthy companions.  It doesn’t really matter to me at this point whether I live or die anytime soon.  I’m just showing up, and sharing as much as I can along the way.  Who knows.

So, if you are one with cancer and are lost like me, don’t follow me but find your own seeds of devotion, your own due north, your own internal compass, what you resonate with, who you trust, and follow that. Send us reports, if you can, along the way.  I’d like to know.  It may be important.

Send smoke signals.

 

 

 

 

A short note from Mary Oliver and Joan Chittister, OSB

While I’m at it, in one of her poems Mary Oliver says (in West Wind):

“To put one’s foot into the door of the grass, which is the mystery, which is death as well as life, and not be afraid!  To set one’s foot in the door of death, and be overcome with amazement!”

A sturdy and trustworthy companion and guide, Mary Oliver.

And Sr. Joan, a warrior,  reminds me of how the Rule of Benedict speaks over and over again about hospitality and the reception of guests, just in case I have left an incomplete sense of the Benedictine way.   It’s hospitality that teaches us honesty and self control, devotion and love, openness and trust.  The way of hospitality is more difficult – and more meaningful – than any asceticism we could devise for ourselves, she says.  The monastery, throughout all time, was to be a place of comfort and of solace and of safety for everyone.  Refugees included.

My husband does hospitality better than anyone I know.  And he is learning to laugh.

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.

Shimmering Grace? WTF is that?

The day after I got my prognosis (“which is an opinion, not a prediction”, says Rachel Naomi Remen, MD!) I was floating high on adrenalin, doing the dishes. Jesus, I may die really soon!  Suddenly a lens shifted in my mind’s eye, like when you get your eyes tested and the doctor slips in the lens that finally clears it all up, and Bam, you can see again?!  Like that.  A new lens.  Literally everything that I could see around me – trees, sky, chairs, table, parsley, the works – was made out of love.  The essential building block for the whole world, from what I saw then.  And that love beamed towards me, and through me, through my heart.  Shimmering.

Didn’t last very long, maybe one second, but it got my attention.  O yeah.

In the Catholic world, there is such a thing as Lectio Divina, which translates as Divine Reading, or Reading the Divine.  People who train in this practice will take from scripture, usually, a small section and read it until some words literally begin to shimmer, either in their sight or in their mind or both.  According to this practice, that is a sign from God that those words are meant for you, in that moment.  So, one then rests in those words for as long as needed, soaking it up.

As a Taoist at heart, I turn to nature as scripture. It’s an ancient practice, a shamanic practice really, listening deeply to signs from God through nature.  When something shimmers in nature, I perk up, don’t you?  Lots of ways to do Lectio Divina.

After six months to reflect on this, I believe that all the prayers being sent my way by quite literally several hundred people were surrounding me and teaching me in that moment, holding me in a love that transforms everything, even cancer, into grace.  Prayers as a felt experience.

The word gratitude doesn’t even touch how I still hold this moment.  It’s part of who I am now, but it’s not always available or present to me at will.  Hence the grace part. It’s gift.

So this blog is in honor of that moment.  Now you know.