Kintsugi: The Golden Joinery of Love—An ancient Japanese art shows how to heal a broken life

 

 

I was surprised and honored to be invited as a keynote speaker last month in Atlanta for an innovative national health care organization. A few years ago, my brother introduced me to his friend, the CEO of this company, via e-mail. He is a remarkable leader and writer who follows my cancer journey with kindness and support. We agreed I would focus part of the talk on the terminal cancer diagnosis and how I stay positive, even joyful, despite this challenge. I knew the team was young, and I wanted at the very least to be interesting, and if possible, inspirational.

I knew it was not going to be easy to simmer my life’s journey and message into one hour. I had also just learned the cancer had advanced beyond my brain and bones, into the liver and lungs. I sincerely was “walking the walk” and not just “talking the talk” as they say in A.A.

At one point, after several weeks, I found myself fretfully pawing through fifty pages of notes, books and several outlines spread over my desk, chair and floor, but I still had no theme.

I have learned when this happens while writing, I need to set it all aside and take a break for a day or even longer. Then I start fresh on a blank page with an open mind. I did that here. I began by creating a list of “Books that Help Me Live a Good and Happy Life,” something I have wanted to do ever since I got the terminal diagnosis to give my three sons. Next, I gathered together all my favorite quotes and poems, which I have been collecting for years.  I did not write a single word of the talk that day, but I noticed two recurring themes in my favorite works: overcoming tragedies and unconditional love.

It was then, surrounded by my beloved books, quotes and poems, that I received the answer on how to put the pieces of the talk together. Something a friend told me in passing months earlier, came to mind.

She had mentioned an ancient Japanese method of repairing broken porcelain that uses gold to fill the cracks. I remembered loving that idea immediately— more than Leonard Cohen’s famous lyric, “there is a crack in everything and that is where the light comes in.”  For some reason when I pictured being cracked up inside, I tended to feel a harsh wind coming in, not the light.

This method of restoring breakage with gold is called Kintsugi (also known as Kintsukuori) and translates as “golden joinery.” I did some quick research and discovered that Kintsugi is an outgrowth of the Japanese philosophy of Wabi-Sabi, which honors the beauty of imperfections.

The Kintsugi artisan uses gold or other precious metal mixed with epoxy to repair the broken piece. This method emphasizes, rather than hides, the breakage. The repaired piece is often considered even more beautiful than the original.

Kintsugi embraces the breakage as part of the object’s history, instead of something unacceptable to be hidden or thrown away. This is the opposite of what I was taught. I learned that I was supposed to be perfect, and that I must hide any imperfections. This belief is imbedded in our culture: if something is broken, toss it out; if something is flawed, hide it.

Kintsugi was the perfect metaphor for my talk on how I was able to find healing in a life that for a long time, was not only cracked, but broken apart—and, in a few places, shattered beyond recognition.

When I was suffering as a child in a home filled with violence, alcoholism and poverty, my maternal grandmother would take care of me and my younger brother almost every weekend. I remember rushing in to hug her ample body, always in a faded small-print dress, her cheeks red from baking, gardening, making soap and canning. My grandparents created a small farm in their inner city backyard. Whatever else they needed, our grandfather built by hand. They raised four children during the Great Depression through their hard work and faith in Jesus. Every night we said the rosary, and every morning went to Mass. Afterwards, I could swing under the grape arbor for hours, sit at the oak table in her kitchen, eating fresh apple pie and watching her cook.  We did not say much, but I basked in the warmth of her loving presence. During those frightening times of my life, my grandmother healed me with her unconditional love.

In my early twenties, with my grandparents and parents dead, I turned to alcohol to block out the pain. I constantly wished that my childhood had been a different one, that I had been born into a different family with different circumstances. I resented spending most of my time trying to recover from the damage. It was hard work trying to fix myself, and to be honest, that never really worked anyway.

Learning about Kintsugi helped me look back and realize that my greatest wish was to be unbroken pottery, instead of who I was. That caused me so much suffering because it was impossible. When I finally had the courage to show those broken edges to others— to my brother, to dear friends, in A.A., in counseling and in safe communities— I received acceptance, and was loved and respected just the way I was, in the same way my grandmother did. My broken parts were transformed into what students of Kintsugi call “precious scars” which honored my whole life, leaving nothing out.

There are many ways to find healing beyond what I share here. It can be a painstaking practice—mine was not quick or easy, and it is still ongoing— like the skill and care required to do Kintsugi restoration.  Through it all, I keep coming back to love as the answer, the golden repair that has lasted.

I found that I needed to find unconditional love for myself too, and not just seek that from others. Then I found that I could begin to love others’ whole beings without judgment. I believe this helped me be a far better parent, friend and family member, and it changed the course of my professional life. Best of all, others who are on difficult healing journeys seem to find inspiration when they see my extensive golden scars, and for that I am grateful.

I no longer think of my broken parts as wounds. They are part of my history, and who I have become.  As an ancient Kintsugi quote says, “The true life of the bowl began the moment it was dropped.”

 

 

My talk was not perfect. They gave me a standing ovation anyway. I had the honor of hearing individually from a number of the participants, who courageously shared their personal stories with me. Together we created an opening of mutual care that is rarely seen in a business setting.

One of my mentors, Dr. Rachel Remen, pioneer of holistic medicine, co-founder of Commonweal Cancer Help Center and best-selling author of Kitchen Table Wisdom tells a story in her book about meeting Dr. Carl Rogers, the humanistic psychologist. When she was a young doctor she saw him demonstrate his method which he called “Unconditional Positive Regard.” A colleague of hers volunteered to be the “patient” and he got up on stage with Rogers. Before he began the demonstration, Dr. Rogers paused a moment, looked at the audience and then said this:

“Before every session I take a moment to remember my humanity. There is no experience that this man has that I cannot share with him, because I too am human. No matter how deep his wound, he does not need to be ashamed in front of me. I too am vulnerable. And because of this, I am enough. Whatever his story, he no longer needs to be alone with it. This is what will allow his healing to begin.”

I can add nothing to these words.  They are pure gold.

 

 

 

There are three types of Kintsugi repair. The first level is when all pieces are available and the cracks are filled with gold to restore the piece:

 

 

 

The next level is when small pieces are missing. Those areas are completely filled with gold:

  

Last, when large areas of the piece are missing or shattered beyond repair, the artisan will take fragments from unrelated pieces to create a patchwork design. This is the one I identify with the most:

 

 

 

 

Below  are the poems,  and quotes I wove into the talk, along with Kintsugi, and my personal—still growing—book list I shared with the group afterwards.

 

 

The Guest House by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
Meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

—Copyright 1997 by Coleman Barks. All rights reserved.
From The Illuminated Rumi.

 

 

Love your crooked neighbor

With all your crooked heart.

—W.H. Auden

 

 

 The sun never says to the earth,

“You owe me!”

Look what happens

with a love like that—

It lights the whole sky.

—Hafiz

 

 

Summer Day

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don’t know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

—Mary Oliver

 

 

Otherwise

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

—Jane Kenyon

 

 

Quotes:

 

You may not find a cure, but you can still receive healing.

—Michael Lerner, Co-founder of Commonweal Cancer Help Center, Bolinas, California

 

 

It does not really matter what we expect from life, but rather what life expects from us. We are being questioned by life, hourly, daily, moment by moment. Our answer—to respond with right action and right conduct.Life ultimately means, taking the responsibility to find the right answer to its problems, and to fulfill the tasks which are constantly set for each individual.

—Viktor Frankl

Viktor Frankl taught that everything can be taken from us but one thing—to choose one’s attitude in any given set of circumstances.  We cannot change these circumstances of being human, (pain, illness, loss and death) but we can change our minds and thoughts.

 

 

There is no enemy. We have stopped fighting anything and anybody.

The Big Book of Alcoholics Anonymous

 

 

“Can this be Okay?”

—Mark Nunberg, Guiding Teacher

Common Ground Meditation Center

Minneapolis, Minnesota

 

 

Be kind whenever possible.

It’s always possible.

—Dalai Lama

 

 

 

 Books that Help Me Live a Good and Happy Life:

 

Holy Bible, New Testament

 Kitchen Table Wisdom, Stories that Heal, Rachel Naomi Remen, M.D.

 Man’s Search for Meaning, Viktor E. Frankl

The Places that Scare You, A Guide to Fearlessness in Difficult Times, and When Things Fall Apart, Heart Advice for Difficult Times,Pema Chodron

The Girl Who Threw Butterflies, Mick Cochrane

My Experiments with Truth, An Autobiography by Mahatma Ghandi

Letters to a Young Poet, Rainer Maria Rilke

Meditations, Marcus Aurelius

Alcoholics Anonymous, Bill W.

The Prophet, Kahlil Gibran

The HeartMath Solution: The Revolutionary Program for Engaging thePower of the Heart’s Intelligence, Howard Martin and Lew Childres

The Velveteen Rabbit, Marjery Williams

Infinite Vision, How Aravind Clinic Became the World’s Greatest Business Case for Compassion, Pavithra K. Mehta, Suchitra Shenoy

The Gift, Poems by Hafiz

No Mud No Lotus, The Art of Transforming Suffering, by Thich Nhat Hanh

Tattoos on the Heart; The Power of Boundless Compassion by Father Greg Boyle

 

 

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Can This Be Okay?

A special message to all the dear people that have signed up to follow my blog, and wrote me kind messages:  

I have been posting mainly health updates for the past two years on caringbridge.org, but you and my brother inspired me to come back to my blog. I may be rusty, but I will start again.

 In “The Last Lecture” published by the Sun Magazine, my brother Mick wrote about me with such love and generosity. I have no words to respond. I cannot possibly write like him, but I can imagine that I am holding up a mirror, so he can see himself in those loving words.

 

 

I showed up at Common Ground Meditation Center in Minneapolis over fifteen years ago, presumably to learn mindfulness meditation.

The real reason was—I needed help. I was living in constant fear of a breast cancer recurrence. I finished treatment for Stage Three triple negative breast cancer, but knew this type could recur within the first few years. I did not know how to stop worrying about dying and leaving my three young sons.

It is challenging for anyone to cope with dying, whether parents of young children or not. My mother and father were both dead from illnesses by the time I turned twenty-four and this loss shaped the rest of my life. This probably influenced my belief that if I died it would be a horrific trauma for my children. No matter how I analyzed this, it seemed far worse than my loss. They were still in primary school. They already lost their birth parents through adoption. The possibility that I could die soon was utterly unacceptable.

I tried everything I knew, but could not find a way through.

Common Ground showed me a path and to this day, I do my best to stay on it.

———————–

Last year I made a modest donation out of gratitude, to the co-founders of the meditation center. I was honored when one of them called to say that he planned to use the donation to have a bench made for their new rural retreat center. He commissioned an artist to create the bench, and asked me for my favorite quote. The artist would carve it onto the bench.

I was touched, and also nervous. I wanted to pick the perfect quote to be permanently etched into this remarkable hand-hewn bench.

My teacher did not know I collect quotes, and have for many years. Until this request, I had never gone back to read them from start to finish.

Reading those dozens of pages, noticing what caught my eye and my heart as the years went by, was educational. I saw a trend: I went from lovely, uplifting poetry, to quotes from people like Viktor Frankl and Pema Chödrön on living with illness, suffering and death. Trying to choose just one, I became stressed. I wanted this quote to be positive and inspirational, not scary or depressing.

I tried, but could not pick just one. So, I sent the top four that seemed to resonate with me and asked my teacher to choose one. I claimed I had “no preference” because I thought that is what a good Buddhist should say. (That turned out not to be true.)

These four quotes have made an indelible impact on my meditation practice, my work and personal life. When I turn to them in a time of need, they immediately change my life for the better.                   

 

  I.     “The mind’s nature is vivid as a flawless piece of crystal.

          Intrinsically empty, naturally radiant, ceaselessly responsive”

                                                                                                             —Shabkar 

 

I heard this quote in a talk from one of the pioneers of mindfulness meditation in the United States, Joseph Goldstein. (Link to the talk:  The mind’s nature is vivid as flawless crystal)

I always thought the concept of “empty mind” that Buddhists talk about seemed drab and uninviting. Boring, even. Devoid of life. I did not want an empty mind—I preferred poetry, music  and dreams. Carl Jung, Rainer Maria Rilke, Mary Oliver. I made a point to avoid the emptiness talks.

This talk and quote changed all that.  I could now picture the mind as flawless crystal. Radiant and clear. A mind that can welcome whatever arises or happens or approaches.  The way crystal takes a beam of light, and without fail, refracts it into beautiful prisms of color.

Later in this talk, Goldstein says, “Compassion and emptiness are not polarities– they are expressions of each other.”

To me this means that when we open our mind to life, and radiate welcoming without judgment, to whatever happens, then compassion arises almost effortlessly. Perhaps they are even one and the same. Now this is sounding like unconditional love. I was so wrong about empty mind!

I also realized from this quote, that when I entered AA and Common Ground I was personally welcomed with this kind of radiant openness. No judgment whatsoever. And both communities and practices have been “ceaselessly responsive” to my many needs.

Another reason I love this quote is because one day at court, after returning from my first bout with cancer, I received a package containing a beautiful full-sized crystal gavel. It was breathtakingly beautiful. It arrived about a year after I ruled on a woman’s case, and she sent it to show her appreciation. She wrote a note saying how grateful she was that I did not just rubber-stamp what previous judges had done for years. (I read ten years of files and saw grounds to re-open it.)

The judicial rules required me to immediately return any gift to “avoid the appearance of impropriety.”  I kept it.

After I got the terminal diagnosis, I began to write the story about the crystal gavel and what it meant to me and why I could not return it. I thought I was dying soon, and wanted to get that story down.

I have not died, despite cancer in almost every bone and three tumors that went to the brain. Six years have passed since they said I was terminal. The Crystal Gavel story is now 200 pages.

 

II.             “The practice of peace and reconciliation is one of the most vital and artistic of human actions.”        —Thich Nhat Hanh

                                                                                                                                                                                                                                            

I was astounded when I read this quote on a calendar someone once gave me.

For years, I questioned my choice of law school instead of pursuing a life of art and creativity.

This quote affirmed that I had not thrown away my artistic side when I turned to resolving conflicts as a lawyer and in the courts. Thanks to this quote, I realized that spending most of my adult life trying to bring peace and reconciliation to serious conflict was artistic. It explained why I loved my work in most of the time.

Thich Nhat Hanh showed me that by bringing my whole self to that work—legal mind, artistic creativity, personal history—something “vital and artistic” happened.

I am deeply grateful to Thich Nhat Hanh for affirming to all of us, the artistry of peacemaking.

 

  III.       Be kind whenever possible.

                It is always possible. 

                                                 —Dalai Lama

 

The moment I saw this quote, I knew I had to bring it as a theme for an international symposium I co-designed on Love and the Law.

I also used this quote to end an article about bringing kindness into family court. It was published after the symposium, in the Collaborative Review, the journal for the International Academy of Collaborative Professionals. The idea of “kindness in the courts” was controversial, and the article caused a stir at first, but now the idea is making its way into many hearts around the legal world. An excerpt of the article was published by the Fetzer Institute. I was deeply honored they chose this article, because their mission is: “We aim to inspire and serve a global movement grounded in connection that transforms the world into a more loving home for all.”    Five Ways to Put a Heart into the Body of Family Law

Even more important than all that, is me trying to be kind every day, in ordinary life, no matter what. Even when I have  a rude clerk on the phone, an insensitive nurse, a loved one who makes a hurtful comment. Even when I start hating myself for a mistake I made or something I said. Those are the times I have to say to myself, “It’s always possible.”

 

 IV.        “Can this be okay?”

                   —Mark Nunberg, Common Ground Meditation Center

 When one of our sons was in middle school, he became more aggressive and out-of-control. This was before we had an autism diagnosis, nothing was helping, and we sometimes had to turn to calling 911 and have him taken to the hospital for emergency services. I was told by one psychologist he would need to go into an institution forever if this continued. I was crushed, but vowed to myself I would never let that happen.

He had a breakthrough after one particular hospitalization, and we were extremely hopeful. I was fairly new to Common Ground Meditation Center then, felt uplifted, and even thought that my meditation practice was helping him and our family find peace.

I assumed the worst was over.

The very next day after his discharge, he tried to jump out of the car while I was driving on the freeway. I stopped the car in time, but he went right back into the same emergency psych unit.

I lost all hope. I stood in the hallway of the psychiatric ER, feeling the weight of despair on my heart. I did not know what to think or where to turn.

For some reason I picked up a phone from an empty desk in the hall, and called Common Ground Meditation Center. I had called the number a few times before and always got the voice mail. I had no idea what message I would leave, but I still called.

Mark, the lead teacher, and co-founder of the center, answered.

I told him in a rush what happened, how all my hopes were dashed, and how devastated I was about our son’s future. He paused for a moment. Then he said, “Can this be okay?”

Standing there, hearing this, everything slowed down.  I looked up and realized I could see my son.  He was sitting on a bed, with a security guard at his side. Suddenly I knew—of course this is ok—it has already happened. 

I needed to open my heart to this, unconditionally. It was up to me to change in that moment, not him or the circumstances. I felt my heart shift, I really did.

Over and over and over I have turned to that question in my life. Not just for that son, but for everything. (He is now living independently— in school, has friends, still has challenges, but don’t we all.)

I used to think “Oh no!” as my immediate reflex to whatever I considered to be unwanted, bad news.

Now I say, “Can this be okay?”

———————————

These are no longer just quotes to me, they are practices for living in this challenging world. I am so grateful for all these teachings that are shared so generously.

Right after I sent the four quotes with “no preference,” I sent a follow-up e-mail saying that my preference was for  Mark’s quote to be carved on the  bench.

 

 

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Kindness in the Court?

 

We may have gotten one step closer thanks to Fetzer Institute.

They chose to feature an excerpt of an article I wrote called, “Five Ways to Put a Heart into The Body of Family Law” on their internationally acclaimed blog last month. Even more: one of their kind and creative blog editors, Amy Ferguson,  invited my teen-aged son Tom who starts art school this fall, to draw an image she had in mind for the blog heading. Working in this kind of community collaboration is my greatest joy, next to spreading the message of bringing kindness to the family courts. This was an unexpected and precious culmination of my life’s work, seeing it move outward, toward kindred spirits who may be able to continue this challenging work. It also is an unforgettable memory for my son to have worked with his mom to make this art. Here is a bit more of the story.

In a traditional family court you must divorce your emotions and leave them at the door. Judges are expected to do the same.Your life becomes a file.

Now imagine family courts that not only acknowledge but embrace this truth: families in conflict are whole people with the same emotions we all have: pain, anger, grief and love.

As lawyers and mediators began creating programs outside the court to avoid this de-humanizing process, I moved right in. I wanted to change the system from the inside out. Thousands of people every year would continue to show up there. Many could not afford anything else. The rest did not know a better way.

I wasn’t naïve—I knew institutions resist change—but I am an optimist, and being a public servant meant something to me. I focused on public service and no other agenda. What services did this public need? The answers were obvious. People came to family court with their pain and their stories. Two things I personally knew well. I wanted to help, not harm.

It turned out not to be that difficult. I invited parents who just filed for divorce into my chambers. No black robe. No elevated bench. No armed deputies looming over us. They saw I was a fellow human being, with my children’s photographs on my desk and their scribbled drawings on the wall. I told them what I would tell a loved one: you are the experts on your family, not a judge, a complete stranger. I offered choices to empower them to solve the conflict themselves, peacefully. Ninety-eight percent chose an alternative to court.

I knew the entire family court model had to change from de-humanizing the people that needed them to a place of welcoming everyone with kindness.

It was not so easy moving this model outside my courtroom to the front door of the courthouse. In fact, it never happened. Now there is a chance, because the Fetzer Institute chose to feature “Five Ways to Put a Heart into the Body of Family Law.”

Fetzer Institute’s one and only mission is: To foster awareness of the power of love and forgiveness in the emerging global community.

Maybe some Family Courts will start opening their hearings with “Kindness in the Court!” instead of “Order in the Court!”

Thank you, Fetzer Institute.

The Complete article was published in the Winter 2014 edition of the Collaborative Review, a publication of the International Association of Collaborative Professionals (IACP.)

(Permission of IACP and the author is required to re-publish.)

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Finding Our Place

I traveled to a remote spot on the Pacific shore in northern California for a week-long Commonweal Cancer Help Retreat in 2005. I wasn’t five years out yet from treatment for triple negative breast cancer—chemotherapy, radiation and surgery. Recurrence rates during the first five years are higher with this diagnosis than with most other forms of breast cancer. After treatment for triple negative there is nothing more they can do except say ‘good luck.’  Until my experience at Commonweal, I lived in a place of vulnerability and fear of recurrence and death. A mass on my ovary appeared two years into recovery which sent me reeling again. I prepared for the worst. At the retreat I found peace of mind no matter what the outcome.

 Every morning after yoga during our Commonweal retreat, the teacher read one poem. He asked us to close our eyes, and he read the poem twice. The first time I listened intently. The second time the poem seemed to enter my entire body effortlessly through the pores. My understanding of the poem went straight to my heart.

The poem “Wild Geese” by Mary Oliver was not read to me there, but I have heard a number of Buddhist teachers share it during dharma talks. I never tire of it.

Whenever I feel that I’m not okay, that I don’t belong, that I’ve lived my life all wrong, that I missed choices and turns that I should’ve taken, reading this poem doesn’t just comfort me. It moves me to a different place, a place I am tempted to call home

~ ~ ~

Two months before brain surgery I was invited to speak at a Collaborative Practice annual event. I planned to say just a few words, then read “Wild Geese.” I wasn’t sure how a roomful of lawyers, therapists and accountants might receive it, but I trusted this group was like me, looking for answers to difficult questions. Most worked with families going through divorce and other painful conflicts. They were constantly looking to improve their practice. I believed this poem might reassure them in some way. The first morning of the conference a participant started to play a short video about geese and their ability to cooperate. Initially I was struck by the synchronicity of another goose-themed presentation.

Next I worried that it would have the familiar story about geese and their V formation which everyone knows—how the lead goose moves to the back of the V formation when it is tired, and how the aerodynamics allow the goose to rest while still in flight. I worried people might assume this poem was repetitious and just tune out.

I was wrong. The video was elegant. The slides, words and music matched the depth and beauty of the Mary Oliver poem. I learned new things about goose behaviors.  I learned that they sense when one goose is struggling and those around it start flapping harder to allow it to continue. The one that touched me most was this: when a goose is sick or injured and goes down, two geese drop out of the V formation and go down with it. They stay close by its side on the ground until it dies or recovers. 

Even if this means they have to find a new V formation.

With a cancer recurrence, terminal diagnosis and brain surgery, I was the wounded goose.  Loved ones dropped out of their lives to stay with me until I recovered. Some in person and many on Caring Bridge. I have never been alone during this experience, not even for a moment.

It turned out I was the last one to speak at the conference. I told the group I would read the poem “Wild Geese” twice, the way my favorite yoga teacher read poetry. I even asked them to close their eyes like he did.  The second time through, my voice caught when I got to the part about the geese, and I had to stop reading or else start sobbing uncontrollably.

 I imagined them all flapping hard so I could finish it, and I did.

shutterstock_3025199

Wild Geese

You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert repenting.

You only have to let the soft animal of your body

love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes, 

over the prairies and the deep trees, 

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air, 

are heading home again.

Whoever you are, no matter how lonely, 

the world offers itself to your imagination, 

calls to you like the wild geese, harsh and exciting-

over and over announcing your place

In the family of things. 

—Mary Oliver

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Mayo or MoMA?

The early morning fog engulfed my car as I came around a curve on the river-bluff highway one hour into the trip. I braked and crept along, afraid I would crash into a car ahead of me or be hit from behind. I clenched the steering wheel and wondered if I made a mistake turning down a friend’s offer to drive me. I was determined to make the ninety-minute drive from Minneapolis to the Mayo Clinic in Rochester, Minnesota alone. For once I didn’t say no to them from my automatic self-sufficiency reflex. This seemed like a sacred journey to me. I needed to be alone. It was likely I would hear for a second time that the metastatic brain tumors, which refused to respond to radiation or chemotherapy, could not be surgically removed. The Minneapolis neuro-oncologist told me the Mayo doctors would say the same thing. I came anyway. I was already facing death from the cancer, and now powerlessness over this tumor and the possibility of losing my mind. I knew I must have silence and time for reflection after this appointment to come to grips with this new stage of my cancer journey. It was too big to talk about.

I glanced over at the passenger seat and saw that my tote bag had fallen to the floor when I slammed on the brakes. Medical records, discs with images of my brain and body, and a pile of forms I spent hours filling out the night before spilled out. I wished I had someone sitting in that the empty seat right now. 

Then, as quickly as it appeared, the fog was gone. The morning sun burned it off, revealing blue sky and sunshine. I got to the clinic in no time after that, but I was still shaken from that fog.

I stuffed everything back in the bag, and struggled out of the car with it.  I knew from experience that when I was this tired, I could easily forget where I parked. I pulled out my phone and took a snapshot of the parking ramp door as I exited. A maintenance man working nearby said, “Bravo! What a great idea. Everyone should do that.”   I replied,  “Well, I’ve got a brain tumor and that’s why I’m here. I don’t trust my brain much today.  He said, “They will take good care of you here. I wish you all the best.”

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I felt a slight spring in my step after that compliment, and maybe even a bit smarter as I followed the signs leading me towards the Gonda Building. This seemingly endless tunnel was carpeted and quiet. I appreciated not having to hear the sound of clicking heels rushing past me in both directions. Private nooks tucked in along the way held a love seat, dark brown wooden end tables and lamps with bronze bases and creamy linen shades. Seeing them reassured me that I could stop and rest comfortably between the ramp and building if I needed to. Calm surrounded me as I walked.

Next, I entered a wood-paneled hall covered with Andy Warhol prints of endangered species.  I never knew he did this series and stopped to read about them.  I still had my phone out from the ramp picture, so I clicked some pictures of them. Their bright and bold colors cheered me on. I felt a bit like an endangered species myself.

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When I entered the Gonda Building lobby, my destination, my heart started to race. I stopped right where I was, took several deep breaths trying to relax and gather energy at the same time. Why did I make this trip anyway? What if they said the same thing? Inoperable. Would I need whole-brain radiation that would take away my cognitive ability? My research showed average prognosis of just months after whole brain radiation for metastatic tumors. Would I just let the tumor grow, which could cause blindness and then death? Would I even have a choice? I wanted to bargain and trade any other part of my body to take this tumor instead of my brain. Wide-awake now from the racing mind and heart, I was forty-five minutes early and wondered what to do next.

On my left, through floor-to-ceiling windows, I saw a mass of tulips and pansies, and a row of simple wooden tables and chairs. I stepped outside and the sun warmed my face while I walked along the flowerbeds. These were the first outdoor flowers I had seen after a particularly long and harsh winter.

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I realized I was smiling. I took a dozen photos trying to capture the colors and the simple beauty of this outdoor space. I stayed out there until it was time to meet the neuro-oncologist.  One more deep breath and I stepped inside.  I walked up to the information desk. (Photo below from the web.)

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Directly across from the desk was a gigantic painting called “Home.” It was done in Pointillism style. I was stunned, because I had just used Pointillism in a short talk at a legal symposium, a gathering of innovative legal minds and practitioners from around the world, committed to improving the profession of family law and the courts. A  linear, chronological model for the talk  just wouldn’t have worked for my story. Neither would bullet points. Pointillism came to me at the last minute, a remnant of my college degree in French. I decided I would describe the most important moments from my work and life, putting them up one by one, on an imaginary canvas, like dabs of paint. I trusted this would create the true portrait of my life and work when I was finished speaking, even if it wasn’t immediately clear how it all connected. I wanted others to feel free to bring all parts of themselves forward too, even if they weren’t sure yet how they connected to the symposium. The reception to my talk was favorable.

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How often does one think of Pointillism, much less use it in a talk about the legal system? Then see a form of it again a week later in a hospital? I stood there in awe about the synchronicity we occasionally get to experience in life. I knew in my heart this was a momentous day and this confirmed it. On the spot, I decided to continue taking photos as I took this journey into the unknown.

It was time to go up to my appointment.

Every time the elevator door opened on the way up to the eighth floor,  I caught a glimpse of well-lit museum quality glass cases, holding art objects such as jewelry, ancient mosaics, and sculptures. The art lover in me wanted to jump right off and get a closer look but I continued on to my appointment, hoping to return afterwards for a better look if I could enjoy it after the appointment.

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The eighth floor lobby seemed more like a library to me than a medical clinic: wood tables, computer stations, reading lamps, leather chairs, natural light, and outlets for charging electronic devices.

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The only “clinical” looking thing I saw so far was the entrance door and hallway to the neuro-oncologist’s office.  The woman at the counter said I would be called in through that door.  It had a ” B” over it and definitely looked like a medical clinic inside. I said, “Well, at least I’ll remember B for brain tumor —I use mnemonic devices since I’m having some troubles with memory.”

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Laughing, she said,  “There you go! You’ll always know which door to go through today!”

The clerk gave me a pager so I could keep roaming. Instead, I sank into a soft leather chair by the windows and put the heavy tote bag on the floor. I noticed I was excited to be here at the Mayo for the first time and looking forward to meeting this new expert. It was worth those weeks of chasing around Minneapolis with multiple release forms to get all my medical records together. It was worth the drive through the fog. I knew now that my life was worth a second look, even though the neuro-oncologist in Minneapolis said they would just tell me the same thing. It was ok for me to want to try to extend my precious time.

Just then a young man called me into the “B” door and got my height, weight and blood pressure in less than a minute or two, as we stood just inside. Then he brought me into an office and waved me to a chair.  He said, “Have a seat. The doctor will be right in.” I sat down to wait for the person I came to see. No intervening nurses, no delays, no bureaucracy, no having to tell my story for the umpteenth time.

The doctor had a large framed print of an ocean shore. I noticed he had many small thank you cards pinned to his bulletin board. Other than that it was minimalist and exceedingly clean.

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The neuro-oncologist came right in. Within the first few minutes he immediately took away the horrific label “inoperable brain tumor.”  He had already scheduled an appointment for me with a brain surgeon at three o’clock that afternoon. My whole body relaxed into the chair.

He used the metaphor of a chess board to describe my situation. He said, “I am teaching my daughter to play chess. I showed her how you can’t touch a piece without moving it. First you think about all the choices you can make. That’s what we will be doing here.” Having played chess, I understood what he meant. Looking at your next move from all different angles, anticipating the move the other player might make in response, as far ahead as possible before moving, was an apt metaphor for the talk we were about to have.

I was riveted by his clear and intelligent explanation of what he saw as my options and his reasoning behind them. Yet I couldn’t help but interrupt him at one point. “Why, when my cancer-filled bones have been stable with hormone therapy for two years, why would some of these cells break away and go to my head? Why didn’t they respond to the hormone therapy like the all the other cancer cells?”

He looked me in the eye and said, “You just tapped into a cutting-edge question in cancer research.” This surprised and pleased me. My brain was not gone yet. I may not have followed exactly what he said there, but my understanding is that the cancer not only has to break off from another tumor, travel through the bloodstream, get through the highly protective blood-brain barrier (which most chemotherapies cannot even penetrate) then set up and grow in a completely new habitat. Yet it is one of the most common sites for metastasis in some cancers and the prognosis is usually grim. I recall him saying cancer researchers were working hard on trying to figure this out.

We concluded with a clear plan of action and then he handed me the name of the brain surgeon I would be seeing in three hours.

I left his office feeling good. I went out for a walk, a cup of tea and a light lunch at a nearby cafe. After a few sips of tea I was drawn right back to the Gonda Building. I had no interest in shopping, walking or sitting outside even though it turned into a perfect spring day.

When I entered the Gonda lobby this time, there was a young woman in the center playing the ukulele,  singing “Hey, Soul Sister.” A crowd gathered—medical people in blue or white coats, families with young children, a few folks in wheelchairs. The second story balcony was filled all around too. Tears filled my eyes as I looked around at the diversity of those who gathered around her, patients and doctors, the sick and the well. I took a video of the room and the singer. When she was done she said, “I’m sorry I won’t be here next Tuesday. I will miss you all. I just graduated from medical school and will be moving.”  A doctor playing a ukulele and singing every Tuesday in the Mayo Clinic lobby. Another surprise.

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When she finished to a round of applause, I took an escalator to view the array of 13 handblown, whimsical chandeliers designed by Dale Chihuly, the world-renowned glass blower. I read on the description that he’d been injured in a car accident and although he designed these, others had to execute the design due to his injuries.

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Imagine 13 variations of this gigantic sculpture over your head as you come up the escalator. You start on the ground floor, and can see them all lined up above you.  As you ascend, you get closer and closer to them. I had to hang on tightly to the escalator handrail out of fear I might fall backwards.  I couldn’t take my eyes off them.

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On the sign at the top of the escalator, I read that Chihuly left it untitled. His only goal was “to make people feel good.”  He knew what it was like to have an injury or illness and be left unable to live your life the way you once did.  That did not stop him from creating. Feelings of inspiration and connection flowed through to me from reading this after seeing the fantastic creations. These were beyond anything I had ever seen in a gallery.

At the end of the description it said: “This piece emphasizes the Mayo Clinic’s commitment to the vital role art plays in the healing process.”

I spent a half-hour with those chandeliers and took dozens of photos.  Then my cell phone rang. The surgeon could see me right then, rather than in three hours.

My appointment with the surgeon went well. He could not get it all but he could get the main part. It could be analyzed. Maybe there was something we would learn from that to help us understand it. I felt complete as I exited the door marked  “B” for the last time. I had extra time now and went back to the elevator to view the art pieces I saw on the way up. Ancient jewelry and mosaics were my favorites.

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 I reflected on the day’s unexpected beauty. I realized there was no magic answer or cure for me at the Mayo Clinic. I still had the brain tumor and a terminal diagnosis.  Their surgeon couldn’t get it all, but he would operate if I wanted. It might help, it might not.

At the end of a Commonweal cancer retreat I attended in 2005 in Bolinas California, co-founder Michael Lerner said something I never forgot. He told us,  “You may not find a cure for your cancer, but you can still find healing.” Through my journey to the Mayo, I came a little closer to understanding what that means.

I brought my fear and despair on the journey, that was clear. The Mayo Clinic’s art, music and garden engaged more than just the terrified and grieving cancer patient who first showed up. Mayo welcomed all of me that day—art lover, musician, lawyer, wife, mother.  My sorrow and imperfections were fully present as I appreciated spring tulips, Warhol, Chihuly and Soul Sister. When everything is allowed, we experience what many call integration, or more simply, what I call peace—peace with life just as it is. No amount of research, logic, or even a cure for the cancer could have given me this gift. 

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Late afternoon shadows fell on the Gonda Lobby as I crossed over it for the last time to head for home.

Afterword-

I did not undergo the partial surgery at Mayo. I stayed on the chemo for close to another year, and continued to struggle with severe fatigue. It was like I walked away from the chessgame midstream, unable to make a move. Or maybe, without realizing it, I was waiting for something better to come along.

It did.

It is a story of mysteries and miracles.

 Miracle

I wish each and every one of you could experience the joys of receiving an abundance of loving messages like those I have been receiving in my guestbook on Caring Bridge but without having to go through a major health challenge.

(Maybe we could start something like that.)

I have switched to posting on Caring Bridge https://www.caringbridge.org

This is because of the  the variety of medical experiences I have had the past few years. I was hesitant to do this, putting all this personal information online, but realized how loved ones might worry about me if I didn’t. All those misgivings are gone now, because so many kind people are on the caring bridge with me. Thank you.

This is the story of how a mystery, or a miracle, guided me to the next move to take care of the brain tumor

For close to a year after they found the braintumor, I suffered exhaustion, whether from the radiation, chemotherapy, or the cancer itself. Nothing made a dent in it.

Despite being tired, I made a special effort to attend parent-teacher conferences for my twins even though I had no concerns about their schoolwork. I wanted to make a connection with their arts high school before they graduated. I missed many school activities because of my brain tumor.

I carefully chose just three teachers I would meet with.

I looked forward to my last conference with visual arts teacher Pat Benincasa. She is an accomplished artist, teacher, and a creative force who inspired my son Tom to find his artistic voice, confidence, and motivation.  He often told me how she guides the student artists with personal attention and encourages them without criticism. In addition to teaching, she helped him select his portfolio for college applications. He was accepted into his first choice art school with a generous talent scholarship. When he relayed their personal conversations or summarized her talks to the class, he spoke about her with what I might call reverence.

No other parents were waiting in line, so I joined her in a quiet corner with comfortable chairs.  I started with my gratitude for her mentorship of my son.  Being a supportive parent is important, but it does not compare to the impact of receiving personal encouragement from an objective and accomplished artist.

I was drawn to her immediately and began to share personal stories, like the brain tumor. I talked about how committed I was to guiding my three boys with love and authenticity in whatever time I had left.  Our conversation became like an improvisational duet of joyful, kindred spirits. We talked about the power of art, creativity, and kindness to uplift and heal. We talked about the challenge of bringing these values into institutional systems like education, law and medicine. We talked about how healing and beauty can arise out of suffering, pain and hardship. It was exhilarating to be in her presence. I left with a heart filled with gratitude and a smile on my face.

The next day, I pulled into the school parking lot to pick up Tom. He was waiting outside for me at the curb waving a manila envelope.

“Mom! Pat Benincasa gave this to me to give to you. It must be really important because she asked me five times during the day if I had it and to be sure to give it to you tonight. Can I watch you open it?”

He jumped in the car. I parked and said he could open it for me. He ripped it open, and inside we found a handwritten letter to me and a small envelope printed with the words, “Joan of Arc Scroll Medal.” As he read her letter out loud, we both started crying. She wrote she had been thinking about our conversation, and how she found me amazing for so many reasons.

Pat said that in 2006 she created this engraved St. Joan of Arc Medal for servicewomen and men to wear on their dog tags, and since then, over 5,300 have gone out worldwide. She wrote, “I also started to send the medal to all people I read about—and who I realized were ‘People of Courage’—you are one of them.”

The page of recipients she included with the medal listed my name beside the first woman president of Harvard, the Boston Police officers who responded to the marathon bombing and others of that caliber. After my name she wrote, “For her continuous and tireless legal, civic, and public engagement to speak for the disenfranchised, voiceless and marginalized people. Her passion to make a difference has made that difference in the lives of young and old everywhere.”

We were speechless.

I took the medal out of the packet held it.

If I were to pick a patron saint for myself, (something I would never have considered doing before receiving this medal) I now believe it would be Joan of Arc. I majored in French and loved France so much I wanted to live there, but my mother was in a wheelchair suffering from MS and depended on me as her caregiver so I came home.

After I received the  medal I did some quick research on Joan of Arc, and learned that this seventeen year old woman warrior followed her deepest calling, even when it seemed impossible, even after she was wounded. Joan was a peasant girl who couldn’t read or write. At age seventeen, she left home to convince the crown prince Charles that she received a divine message to lead the French army to Orléans and take it back from the English. She promised she would prevail and then see him crowned king of France.

Joan of Arc endured ridicule and doubt.  An illiterate young girl with no military experience seeking to lead France’s military—it was absurd. She held firm in her mission and her faith until she succeeded in meeting with Charles. Against the advice of his generals and counselors, Charles gave her an army and put her in charge. She succeeded, just as she had predicted. Later she was captured by the enemy and Charles did nothing to rescue her.  After a corrupt trial she was burned at the stake. She never once wavered from her faith even in the time of her death.

During our meeting, I never told Pat my love of France.  I didn’t tell her about surviving a childhood of abuse, neglect and poverty, or how I lost my voice before I was five years old, with what I later learned was ‘selective mutism.’ I was clearly an unlikely candidate to become a lawyer, judge or leader. Yet I kept going, and did accomplish these things in my quiet way.

I had to quit working in the courts when the cancer returned. Although my bones were stable on hormones, rogue cancer cells went to my brain. The local surgeons refused to operate. A Mayo Clinic surgeon said he would, but he likely couldn’t get it all.

I told Pat during our conference, that I just had an article published in an international journal which I called, “Putting a Heart into the Body of Law” — an article about my life’s mission to improve the legal system and make it one based on kindness, care and respect. I told her how difficult it was when I tried to bring change based on those values to the family court. I had bureaucratic doors slammed in my face many times, but I kept going. I would joke and say I tried to “make a dent in the universe,” (borrowing Steve Jobs’ phrase,) but I ended up with a dent in my forehead instead. It was a dream come true to finally be able to share my values and visions with the world through the international journal. (The full article can be found by clicking on LOVE. )

I rushed to a local craft store for a chain to put on the Joan of Arc Medal. I took a long time finding exactly the right one. Then several attempts by the clerk to cut it to precisely the right length.  I took up a lot of her time, so when she was ringing me up, I began to explain why this medal was so important to me. I had some tears when I mentioned the inoperable brain tumor, my three teen-aged boys, and the artist and teacher who gave this to me.

The clerk dropped everything and started clicking at her computer, then spun it around to face me. It was the website for the Barrows Neurological Clinic with a photo of Dr. Robert F. Spetzler.

She said, “My best friend had an inoperable brain stem tumor that she was told was terminal by four surgeons.  This doctor in Phoenix took it all out.  Later, it grew back on the other side of her brain stem and he took that out too.  She is a mother of three also, and has been cancer free since. He saved her life.”

Her friend, still cancer free, had over 100,000 visitors to her caring bridge site, and was writing a book.  She had just completed a Triathalon.

I called Barrows, flew there in February with all my records and met with Dr. Spetzler. He said he would absolutely try to get it all. He thought he could. He was humble and extremely kind to me. When I read about him I was flabbergasted at his massive accomplishments and creation of techniques that changed the world of brain surgery forever. I was in the presence of greatness, but he acted like I was the only important person in the room.

I scheduled the surgery for his first open date—March 12. I hesitated  a moment before saying yes, because this was the date my mother died, when I had just turned 24. It was also the  date I became a mother, sixteen years later. Now this.

Dr. Spetzler completely removed that tumor.

There is yet another miracle. I discovered for the first time, when I looked up the artist Pat Benincasa’s website gallery,  that she won a national competition in 1995 to create and install her seven-ton glass and steel skylight entitled Falling Water Skylight, for The Grand Stair Hall of the Minnesota Judicial Center on the State Capitol Grounds in Saint Paul, Minnesota.

Pat Benincasa has made much more than a dent in the universe. She created an opening in it. An opening of beauty, where light and healing can enter a place that truly needs it.

May my good news, positive results, and brush with mysteries and miracles give hope to those who suffer from this disease. May the light of mystery and miracles shine on you always, healing your challenges and illuminating your joys.

Below: Falling Water Skylight and Joan of Arc Scroll Medal, by Artist Pat Benincasa.

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Cats, Cancer and the Kindness of a Stranger

 

No Ordinary Trip

This past June I drove a van packed with teenagers up north, to a lake resort we have enjoyed for years—Northern Pine Lodge on Potato Lake, in Park Rapids, Minnesota. It is about a 4-hour drive from the Twin Cities under normal circumstances. This trip was not “normal circumstances.”

I had all three of my sons, plus three of their friends.  This was the first time in over five years that my oldest son, Lee, 18 years old, came along.  His special needs had evolved to where he no longer enjoyed leaving home very much or being outside in nature. Most recently, he did not want to leave our 3 beloved cats—especially his handsome tuxedo cat Norman Ruffles.

Norman will snap at those who pet him “unmindfully”  (meaning without laser focus on Norman’s head and ears, and absolutely no looking away or thinking about anything other than how awesome his silky head is). Yet Norman spoons with our son all night, his head tucked under Lee’s chin, and one soft white paw over Lee’s arm. He also allows only Lee to carry him around and gives Lee lots of “leeway” as we call it.

Lee agreed to go to the cabin for just 3 days. He was lured by the offer to make some money helping to cook for the crowd (he is an excellent self-taught gourmet cook) and by our agreeing he could learn to drive on the quiet country roads with his new driving permit. The night before we left, he insisted the cats needed a large automatic feeder and water supply system he saw at the pet store. Though this item was clearly intended for huge dogs or perhaps small elephants, and Lee planned to go home with his dad in three days, we made these provisions for his peace of mind. We have learned over the years that these investments are well worth it.

This year, in addition to sunscreen and bug spray, I packed chemotherapy pills. I had a great deal of metastatic breast cancer throughout my bones, spine and skull. Last year, tumors appeared in my head, which caused me to miss this trip. Despite 30 days of targeted radiation, they continued their slow growth. A brain MRI was scheduled three days after our return and we all hoped the chemo would shrink the brain tumors.

I drove carefully with my precious cargo and let go of any thoughts of what lay ahead of me. Having my three boys together, maybe for the last time like this, was something I treasured. I was truly happy that sunny morning as we headed north on Highway 94.

Large Crisis at Little Falls

We made it about halfway to the resort before my idyllic vacation picture fell to pieces.

Lee found a wonderful lunch spot for us in Little Falls, using his iPhone. His dad, following in a separate car so he could bring Lee home in three days, took a different exit and we got separated. I knew his dad would be at the restaurant in less than 15 minutes, but Lee spun out into some anxiety, apparently triggered by the fact we got separated.

As we entered the restaurant, I was hopeful we could salvage an enjoyable lunch.  The Black and White Cafe had an amazing gourmet menu for a small town, and I pointed out a cute table for 8 in a sunny spot, where we could all sit on trendy counter-height chairs. It seemed custom made for us.  But Lee insisted upon a table in the dark and chilly back room where no one else was sitting.

Lee’s anxiety came out as anger directed at me. He said he wasn’t hungry and laid his head on the table. My heart went out to him. I knew he was stressed, but truthfully, I wanted him to snap out of this quickly so we could have the delicious lunch and fun trip I imagined.

We all tried to soothe, distract, and even ignore him. Nothing worked. So we ordered without him.  I was sad because I saw so many creative items on the menu which he would have loved. He chanted, “I miss Norman. I want to go home. I miss Norman.”

I whispered, ”Everything will be ok. Dad is on his way.”
Lee got louder.

“I miss my cats. I want Norman!”

I resorted to platitudes. “This too will pass, Lee.”

The other teens stopped talking altogether and ate silently, looking as though they were at a funeral. All the fun and joy drained away.

My stomach clenched and wouldn’t let go.

I remembered a dharma talk I heard from Ajahn Sucitto, a leading Western Buddhist monk.  He explained how difficult silent retreats are for some people. At a recent retreat, during their first daily one-to-one meeting, a middle-aged woman told him she couldn’t do it. It was too hard. She said she had to leave.  He listened, nodding with compassion and understanding. He agreed with her. Yes, she could go, and that would be ok.

The next day she returned for their daily meeting, saying she needed to leave, it was too difficult, she had to go. Again he agreed with her, understood, nodded acceptance.  Yes, she could go. It was ok. This went on every single day for the duration of the retreat.  She stayed for the whole thing.

I knew I needed to get to what was happening right in front of me, instead of what I wanted this story to be. Following  Ajahn Sucitto’s lead, I plunged in.

Speaking to the top of his head across the table, I said,

“Yes, Lee, you can go home, it’s ok. Dad can turn around right now and take you back, no problem. He won’t mind. Or at any time you need to go home. It’s really ok.”

I felt something shift inside of me. At first I was just mouthing the words, noticing I was still resisting the possibility that he might take me up on this, choose to leave and ruin my dream. By the time I finished, I meant every word.  Aligned with reality, I found freedom from all that stress. It really was ok if he needed to go home.

When we left the restaurant, Lee said, ”I’ll keep going, if I can hug a cat. There’s an animal rescue shelter right outside Park Rapids and if we go there first, I don’t need to go home. The shelter is open until 5:00. We can make it there by 4:00.”

The other teens would have preferred getting right to the cabin but they were all very understanding and supportive. We took off for Headwaters Animal Rescue Shelter.

Lee directed me with his iPhone, but when I arrived at the address at 4 pm there was only a field of horses. We all agreed they did not look like rescue animals.  Then the other teens joined in with their smart phones, reading from Google Maps and Mapquest. Same result.  I drove around and around, always ending up at the horse ranch.  It was now 4:40.  I was losing hope and chemo fatigue was setting in.

Lee said, “It’s ok, I can wait until Monday” in the voice that means “It’s not going to be ok.”

Just then two teenaged girls walked down the country road.  I asked if they had any idea where it was. We were close enough for them to point to it, just down the dirt road ahead that wasn’t on Google maps.

Headwaters Rescue to the Rescue

We pulled into the parking lot, and I saw just one small pick-up truck parked there. The one-story building had its lights on. As I pulled closer, though, we saw a handwritten sign taped on the door:

CLOSED TODAY for special event

I was crushed.

Lee got out anyway. So did the others. Why, I do not know. Maybe they thought we could peek in and at least see a cat in a cage. Could that be enough?

Ben, one of Lee’s younger brothers who is a dancer, vaulted gracefully over the rail fence surrounding the building’s porch, arrived at the door first, and pulled on the door handle.

It opened! He went right in, the rest of the teens following. I tiptoed in behind. A woman came out from a back room and said, “Sorry, we’re closed.”

Lee was already moving towards their “cat colony” like a nail to a giant magnet. Dozens of cats, no cages, with cat bunk beds and gigantic scratching posts and climbing structures that reach to the ceiling were in plain view behind the glass doors.  Lee does not wait for permission like I do. In he went.

Tears streamed from my eyes as I asked if my son could just hug a cat and then we would be on our way. I knew that sounded weird, so I told her a bit more of the story.

The other teens were pressing their faces against the glass, dying to get in there too.

“It’s fine,” she said, they can all go in. But just for a few minutes, though, because I have to get to an event for the shelter.”

Lee sat on the floor, hugging an all-black cat, rubbing his face in its fur. The others waved furiously for me to come in too.

“Are we taking too long?  Is it okay if I go in too?” I asked.

“Go right ahead.”

Before I went in I wrote out a donation check to Headwaters Rescue, folded it over and handed it to her. Tears started again, this time I think because of her unexpected kindness.

I blurted, “I have stage four cancer. I’m trying to do everything, trying to keep him on the trip and trying to make happy memories for all of them. I can’t thank you enough. I’ll never forget you. What’s your name?”

“Mary,” she said.

She said, “You’re lucky I was so slow getting out of here. I’m on my way to a shelter fundraising event.  You’re our first donor. Thank you.”

Lee suddenly appeared at my side and opened his wallet. He took out two twenty dollar bills and handed them to Mary.

“Sweetheart,” I said, “I made a nice donation. You can save your vacation money.”

“The sign says they need large bags of cat food. I want to help feed the cats. Here.”

When I entered the colony, each teen called to me, wanting me to meet “their cat.” One by one, I made the rounds.

When I got to Lee, he told me that when he was sitting on the floor holding the black cat, a gray one tapped him on the back. When he turned around, the gray cat quickly looked away, as if completely disinterested. This went on and on. I laughed through my tears. It is so like Lee to do things like that to us.

Was this whole thing a miracle? Or the perseverance of a young man who can conjure up exactly what he needs to survive new experiences? The transformational power of kindness in action?

Despite the place not being on google maps, an exhausted mother, six impatient teens, and the place being “Closed,” Lee found not just one cat to hug, but dozens.

As we drove the last mile to the cabin, everyone talked excitedly about the cats they hugged and petted, and which ones they would like to adopt. It turned out to be one of the best memories of our vacation. Lee stayed the whole week.

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Stage 5 Cancer

 

Never heard of Stage Five Cancer? That’s not surprising. I made it up!

When you hear a diagnosis of Stage Four cancer and are told it is terminal, it seems like The End, right there and then. But in most cases it isn’t. So I decided we need a new name for this place I live in.

We all know intellectually we are going to die sometime, but hearing it from a doctor, seeing a chart that shows your body filled with cancer cells, and learning your immune system has failed you, is a reality check like no other.

Once you settle down, you find out that they often have ways of keeping the cancer in check for quite a long time. This time feels like a reprieve from death row.

This time is precious, joyful, grievous, hopeful. In many ways, you can live an ordinary life in Stage Five. The only difference is that you are truly conscious of the inevitability your death. At times you can even befriend it.

Stage Five can be a place of equanimity. It takes practice to maintain the balance. It isn’t there naturally, at least not for me. (See”Meditating as Fast as I Can”)

In the 2.5 years since the “terminal” diagnosis, I’ve learned about many treatments that slow the cancer down. And new ones keep coming along.

My wonderful oncologist says, “As long as the cancer doesn’t grow, you stay alive.” We do not try to get rid of it now, just keep it from growing.

It helps to have a healing team you trust, a medical team that listens, and a doctor on the cutting edge of cancer research.

Despite all that, sometimes the cancer grows, and you try something else. Then it stops growing.

It grows again, moves somewhere else, and you try another strategy. Each physical shift requires emotional and mental shifts as well. You do get used to it.

I’ve found recurrent themes:

-gratitude for the care and expertise of my medical and healing team that’s given me this extra time

-gratitude for friends and family who have had to shift from seeing me as the healthy, invincible super-person of endless energy and competency to someone who needs to talk about cancer and chemo, takes naps and asks for help

-reflecting on what is most important each day, each moment, and then doing my best to do that

-planning for the end of this life

-releasing my grip on expectations

-admitting that I still hope for a permanent remission (don’t dare say cure) no matter what I am being told

-balancing a realistic optimism for doing joyful activities each day while not denying the
reality of this diagnosis and the need for extra self-care

-allowing pain, fear, grief and sadness to arise, and feeling those emotions fully so I can move on.

Stage Five then, is living.

Living with death and life right here all the time. Living with a conscious choice to be in the present moment with optimism and joy more often than thinking about the future with fear and sorrow.

When you think about it, I am no different than everyone else. Once we recognize the inevitability of death of this body, and choose to live fully, we could call that Stage 5 too.

Welcome. I hope you’ll enjoy life with me.

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Meeting Raymond Carver

I fell in love with Raymond Carver’s poems and short stories during the 1980’s, just as people fall in love with each other.

His words are woven into that decade of my life, a challenging time where I found sobriety and set out on my own to open a law office as a young lawyer. Both my parents were dead, and now I dreamed of finding love, happiness, and starting my own family. What I got instead were divorce clients and the fellowship of AA. Not to minimize those– they saved my life— but I suffered years of loneliness when I came home alone from the office or gatherings with friends.

The spare, haunting words of Raymond Carver became my heart’s companions. He wrote stories and poems of loss and sadness in the lives of ordinary and down-and-out people. He understood my deepest unspoken longings and brokenness.

I knew he lost his family due to his drinking, but through it all, Carver found his great gift of creative writing, and at age 40, he also found sobriety. He achieved some fame and awards, and is well-known for revolutionizing the short story. Then he found the love of his life, poet Tess Gallagher. For me, a newly sober young lawyer with a childhood devastated by my father’s alcoholism, Carver carried a story of hope out of the wreckage.

Then—after finding success, sobriety and Tess, Carver found out he had widespread cancer with just months to live. He died right after turning 50, same as my dad. The difference between them is that Raymond Carver died fulfilled. He and Tess were married just weeks before he died, and he did not seem the least bit bitter about his fate, which made me admire him even more.

My father, a talented and successful trial lawyer in the late 50’s and early 60’s, never could stay sober. He was involuntarily committed for treatment a dozen times and it never took. He lost everything and died alone. Somewhere along the way I adopted Raymond Carver not only as my favorite writer but as a father figure and beacon of hope that I, too, might find my true love and creative expression, despite the tragedy in my family.

I had the unforgettable joy of meeting Raymond Carver for about a minute in 1985, during his time of sobriety and before his fatal cancer diagnosis. My brother Mick, his fiancée Mary and I went to his reading here in the Twin Cities, and I was excited as anyone could be, seeing their personal hero. We got just one signed hardcover copy of Where Water Comes Together with Other Water to share between us, because we were on tight budgets, just starting out. We technically still share “joint custody” of the book, though I have had it all these years in plain view on my bookshelf, thanks to my brother’s generosity.

After the reading, I wanted to tell Carver how much his writing meant to me. It was impossible to put into words. Also, I had a couple years of sobriety too, and wanted to tell Raymond Carver this! When it was my turn at the signing table, star-struck and trembling, I told him that I, too, recently found sobriety. I asked him to inscribe the book with “Keep it Simple” —a slogan from AA. Then I mumbled something about the slogan perhaps also being able to refer to his unique writing style, which is why I chose it for the inscription. Secretly, I thought I was rather clever to make that connection, and further thought that maybe he would be impressed by this insight. I cringed a bit right now remembering saying that to such a great writer.

Years after his death, I understood that he would never have referred to his own writing as simple. He called himself as a “precisionist”. (Of course, that’s it.) At the signing table, though, smiling, looking into my eyes with kindness, he said, “That’s great!” and he wrote exactly what I requested:

 

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I noticed for the first time today as I took these photos, that the photograph of Carver on the back cover was taken in front of a wall of cedar shingles, same as those on the old screen porch where I now write, overlooking a small lake.

Water coming together with other water.

In honor of Raymond Carver today and of the power of writing to inspire, and at times rescue us, here are five of his poems, ones that I have held deep in my heart all of my adult life. As I assembled them, I realized they create a short, yet clear and powerful journey through his life. As I now face stage four cancer, I am inspired by Carver to practice his “attitude of gratitude”. Here’s hoping you can read these through in one sitting to get a glimpse of Carver’s life and writing in these beautiful, precise poems:

 

Fear

Fear of seeing a police car pull into the drive.
Fear of falling asleep at night.
Fear of not falling asleep.
Fear of the past rising up.
Fear of the present taking flight.
Fear of the telephone that rings in the dead of night.
Fear of electrical storms.
Fear of the cleaning woman who has a spot on her cheek!
Fear of dogs I’ve been told won’t bite.
Fear of anxiety!
Fear of having to identify the body of a dead friend.
Fear of running out of money.
Fear of having too much, though people will not believe this.
Fear of psychological profiles.
Fear of being late and fear of arriving before anyone else.
Fear of my children’s handwriting on envelopes.
Fear they’ll die before I do, and I’ll feel guilty.
Fear of having to live with my mother in her old age, and mine.
Fear of confusion.
Fear this day will end on an unhappy note.
Fear of waking up to find you gone.
Fear of not loving and fear of not loving enough.
Fear that what I love will prove lethal to those I love.
Fear of death.
Fear of living too long.
Fear of death.

I’ve said that.

 

 

Waiting

Left off the highway and
down the hill. At the
bottom, hang another left.
Keep bearing left. The road
will make a Y. Left again.
There’s a creek on the left.
Keep going. Just before
the road ends, there’ll be
another road. Take it
and no other. Otherwise,
your life will be ruined
forever. There’s a log house
with a shake roof, on the left.
It’s not that house. It’s
the next house, just over
a rise. The house
where trees are laden with
fruit. Where phlox, forsythia,
and marigold grow. It’s
the house where the woman
stands in the doorway
wearing the sun in her hair. The one
who’s been waiting
all this time.
The woman who loves you.
The one who can say,
“What’s kept you?”

 

What the Doctor Said

He said it doesn’t look good
he said it looks bad in fact real bad
he said I counted thirty-two of them on one lung before
I quit counting them
I said I’m glad I wouldn’t want to know
about any more being there than that
he said are you a religious man do you kneel down
in forest groves and let yourself ask for help
when you come to a waterfall
mist blowing against your face and arms
do you stop and ask for understanding at those moments
I said not yet but I intend to start today
he said I’m real sorry he said
I wish I had some other kind of news to give you
I said Amen and he said something else
I didn’t catch and not knowing what else to do
and not wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back it was then
I jumped up and shook hands with this man who’d just given me
something no one else on earth had ever given me
I may have even thanked him habit being so strong

 

Gravy

No other word will do. For that’s what it was.
Gravy.
Gravy, these past ten years.
Alive, sober, working, loving, and
being loved by a good woman. Eleven years
ago he was told he had six months to live
at the rate he was going. And he was going
nowhere but down. So he changed his ways
somehow. He quit drinking! And the rest?
After that it was all gravy, every minute
of it, up to and including when he was told about,
well, some things that were breaking down and
building up inside his head. “Don’t weep for me,”
he said to his friends. “I’m a lucky man.
I’ve had ten years longer than I or anyone
expected. Pure Gravy. And don’t forget it.”

 

Late Fragment
And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.

 

Raymond Carver, (1938-1988)

The poems Gravy and Late Fragment
are engraved on Raymond Carver’s tombstone.

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Divine Mother

It all came down to this. Lying in bed with the phone, having paid a ridiculous sum for a Divine Mother Distant Healing Session.   She had of course told no one. The ad said the healer could invoke Divine Mother, who resides at the very vibration of creation.   Then, she’d be dipped in and out of Divine Love and Nectar, soaking her right down to her cells, healing her.

The nectar. She couldn’t stop thinking about it. She had to have it. This was her last hope.

At the scheduled time, she answered, and a soothing voice asked if she was ready. She pressed the speaker button and lay back. She followed the words, which soon became wordless ocean-waves of sound. Gradually, the sound dropped away. Then, complete stillness. She became aware of a subtle vibration, spreading throughout her body, steadily increasing. That’s her, said the voice.   Divine Mother’s here now.

Just then her three children burst into the room.

Mommy, Mommy!

You weren’t at the bus stop!

We had to use the secret key!

The children got up on the bed and lay beside her. They heard the voice say that the Divine Love and Nectar was pouring down now, covering and caressing her, soothing and soaking every cell in her body. More and more Divine Nectar, the voice said, bathing her, filling her, freeing her, healing her. Lifting her up. They all got up and held hands and jumped on the bed shouting, More! More! More!

 

divinemother

~This was my first piece of Flash Fiction written for a Loft Class, March 2013~

 

 

 

 

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I’m Meditating as Fast as I Can

When I’m not worrying about my Stage 4 cancer diagnosis, I can easily pendulum to a”get ‘er done” mindset.

I feel a need to hurry up with making a bucket list and to complete everything on the list. I imagine I should organize the photos, (which requires finding the photos first, and even developing some of them, I am ashamed to say), write long emotional letters to my sons, and make them all beautiful quilts to remember me by. And so much more.

Even when I sit for meditation, my mind wants to focus on all the things I should do. Perhaps that seems easier than facing the truth.

The truth is–I don’t have time or energy for any of those bucket list things while also living in the present moment. My days are filled with the ordinary busy-ness of three teen-aged boys, one with special needs, my medical treatments and appointments, meditation practice, writing, preparing nourishing meals and self-care.

I gently remind myself again, and then again, that being with what is happening right now is okay. More than okay. It is all there is.

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