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Facing the End

12/12/2014

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PicturePhoto by Clayton Cotterell
by Randall Barton
Published in Reed Magazine Volume 93, No. 4: December 2014

If you knew your death would come when you finished reading this article, you might greet it like Anne Boleyn at the block: accept your fate with courage and dignity, pay the executioner, and die with one stroke of the blade. You might also read very slowly.

The truth is that until it’s imminent, few of us are willing to contemplate death—and even fewer to talk about it. 

Holly Pruett has taken the subject out of the closet and made it the centerpiece at her PDX Death Cafe, where people gather to consume sugary desserts and discuss shuffling off the mortal coil.

In a Portland park, strangers gather, six to a table, to experience their first Death Cafe. A woman shares that she started thinking a lot about death after being diagnosed with cancer. Another recounts a wake where children played near the open casket of their kindly grandfather. A man relives the fiery, ghoulish nightmares he had after viewing his grandfather’s corpse when he was a child.

It may sound like a scene from the film Harold and Maude, but the notion of folks coming together to discuss death gained steam 10 years ago when Swiss sociologist Bernard Crettaz began hosting what he called the Café Mortel. Attendees talked about the nature of death, and how our fear of it informs the way we live. In an age of tweets and text messages, these conversations proved engagingly authentic. Frothy “I am here” postings on social media and sound-bite news stories felt mundane and fleeting compared to something so profound and final.

In 2011, Londoner Jon Underwood established the Death Cafe franchise, providing open forums for talking about death while eating cake. (The cake is supposed to help people steady their nerves.) The not-for-profit events have no structure, themes, or guest speakers, and are not intended to provide information or grief counseling.

Bucking the conventional wisdom that people don’t wish to talk about death, Underwood discovered legions eager to discuss one of life’s crowning experiences. The declining influence of organized religion in people’s lives may contribute to the Death Cafe’s rapid growth. There are now more than 900 Death Cafes in 19 countries. But Underwood suggests that another factor spurring interest is the baby boomer generation coming to the top of life’s escalator.

“That’s the generation that has had the best services throughout their lives,” he says, “and I don’t think they’ll settle for second-class services when they come to the end of their lives.”

Holly Pruett radiates the clear-eyed conviction of a cleric. Three of her female relatives are Presbyterian ministers, and though she operates outside of that paradigm, she often describes her work as being like a secular chaplain. As a “life-cycle celebrant,” she weaves her client’s stories, beliefs, and traditions into ceremonies that commemorate major life events.

“Celebrations connect us to each other, to our community, and to the meaning in our life, which we can often skate behind,” Holly says. “When it is done well, ceremony allows us to bring the sacred into our lives—whether or not you use that word.”

Because humanity continues to cross the same thresholds, acknowledging these passages gets people outside their own story to connect both with those who have come before and those that will follow. Nonetheless, Holly says that the ways we approach funerals, births, marriages, and deaths have become formulaic and overly commercial.

“The needs are timeless,” she says, “but the conventional ways they are being met have become anachronistic and stale.”

Using skills honed as a student at Reed, Holly uncovers narrative needing to be strengthened, transformed, released, witnessed, remembered, affirmed, grieved, or memorialized. She suggests a path of inquiry to get there, and often officiates at the resulting ceremony.

Attracted to Reed for its academic rigor and counterculture reputation, she moved from New Haven, Connecticut, taking to Portland “like a duck takes to water.” She chose history as her major, and wrote her thesis on the 1905 Lewis & Clark Centennial Exposition.

During her senior year she volunteered at the Portland Women’s Crisis Line, and after graduating took a job at a women’s shelter. Facilitating peer-led sessions, she witnessed the power that comes from hearing someone else’s story.

“I wasn’t there to solve any problems or provide answers,” she says. “But I could hold up a mirror and reflect back images of the women as capable, worthy, and intelligent that were different from the reflection that the abuse had shown them.”

At 25 she took a break and traveled through Europe and Southeast Asia, during which time she came out as a lesbian. By the time she returned to Oregon the state was embroiled in a battle over Measure 8. Sponsored by the Oregon Citizens Alliance, the 1988 initiative repealed Governor Neil Goldschmidt’s executive order banning discrimination based on sexual orientation in the executive branch of state government. Holly joined in the fight, and though voters approved the measure, she got an education in how the advocacy process works at the ballot.

Entering the world of Salem politics, she took a job as a lobbyist for the Women’s Rights Coalition, followed by a stint as director of the Oregon Coalition against Domestic and Sexual Violence, a statewide coalition of women’s shelters and rape hotlines. For nearly 20 years she worked as a leader in the nonprofit sector and behind the scenes in advocacy campaigns. Then, in her late thirties, her father was diagnosed with cancer.

“The theme in my life had been losing my father,” Holly says. “First it was his work, then a four-year affair culminating in a 6,000-mile relocation just six days after my parents’ divorce. He never came back.”

Holly  helped care for her father and lived with him the last summer of his life. But when he died 18 months after his diagnosis, her stepmother was too exhausted to go through the ordeal of a funeral. She had the body cremated and sent Holly some of his ashes in a yogurt container.

“I had to figure out for myself some kind of ritual that would help me,” Holly says. “I realized later it was less a memorial for him and more a rite of passage for myself, fully becoming a fatherless daughter. That’s what really set me on the path.”

A door had closed, but another opened and Holly stepped forward on a path of new professional engagement.

“I was raised to get to the level of highest impact,” she says. “Why be a teacher when you can be a principal? I had developed the strategy that could bring 5,000 people to the state capitol or affect the biennial budget, but I wanted to be more personally and directly involved with the important things in people’s lives.”

A friend shared a magazine story about a green burial preserve in South Carolina and suggested they bring the idea to Portland.

In natural burial, human remains are interred without being embalmed or entombed in a vault or liner. Placed in a shroud or biodegradable casket, the body simply decomposes into the earth.

In America, embalming gained currency during the Civil War because it enabled the interment of dead soldiers back home. Tens of thousands viewed the fallen president as Abraham Lincoln’s funeral train progressed from Washington, D.C., to Springfield, Illinois. In more than a dozen cities people filed past his casket and marveled at the preservation of the corpse, establishing a precedent for creating a focal point for the funeral.

Holly was working with Portland’s River View Cemetery to offer natural burials—concurrently taking instruction in funeral celebrancy—when she first heard of the Death Cafe. Approaching several other Portland practitioners, she suggested they give it a try.

Why don’t we talk about death and dying?

We live in a death-phobic culture where the end of life is seen as a failure rather than an achievement, Holly answers. Everyone recognizes the difficulty of giving birth and being born, but few honor the work it takes to die. In one century our society has progressed from families laying out their dead in the parlor to what Kenneth Hillman, professor of intensive care at the University of New South Wales, Australia, calls “ICU conveyor belt death . . . where even doctors don’t feel comfortable talking about death and dying.” Studies show that almost half of the cost of health care is spent in the last six months of life.

“We want people to be medicated and shunted off so that we don’t see the work that it takes to die,” Holly says. “We don’t have the opportunity to learn from it.”

PDX Death Cafe has drawn attention for the large numbers it attracts. It isn’t unusual for Holly to receive 100 requests for an event that can accommodate 80. In other parts of the country, events typically draw between 15 and 25 people.

Jeremy Appleton ’88 attended an alumni reunions Death Cafe hosted by Holly. He points out that some Buddhist sects contemplate death as a profound spiritual practice. The more we talk about and reflect on death, the less we are afraid of it, Jeremy says, but he finds this easier to do in the company of others. Listening to the myriad perspectives at a Death Cafe can induce a taboo-breaking exhilaration.

“As long as I fear death, I am not living life to its fullest,” Jeremy says. “By attending a Death Cafe, actively contemplating death, and making its reality more fully conscious, I endeavor to overcome my fear.”

Holly likens the experience to chatting with a stranger during a layover at an airport. Intimacy is easy when you don’t have to worry about any consequences.

“From my experience, I find it real and intimate that people are able to connect around this common humanity,” Holly says. “It’s not necessary to have expectations about that going further.”

“We live in an amnesiac culture with very little connection to our lineage and what came before us,” Holly says. “There’s no sense that there’s a future to be tended by making our stories available so that others might study them. Our stories show we matter and made an impact—that there was a space we occupied and the shape of that space can still be acknowledged.”

At a PDX Death Cafe picnic, people were invited to come early to complete a checklist of activities preparing them for death. They were asked to think about how they would like to die, in what surroundings, and with which people present. One man stalls in his progress and a facilitator approaches to ask if she can help.

“I’m still not certain that I’ll ever come face-to-face with the Grim Reaper,” he jests.

“I’ll give you better than even odds that you will,” she smiles.









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Swaddled by Song

11/22/2014

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PicturePhoto by Portland Threshold Choir member Kri Schlafer; click image to visit their site
Last week I had the extraordinary experience of being sung to as I lay nestled in a recliner surrounded closely by eight members of Portland's Threshold Choir.

"What do you need?" they had asked me as I settled into the chair in the center of their circle. I told them I had just completed four ceremonies and a speaking engagement in the last five days and was heading off to the east coast to lead the memorial service for a good college friend. 

They knew just the songs - in fact, they asked if they could sing me two. No hesitation on my part - Yes, please! 

I shut my eyes and let their voices envelope me. Their gorgeous, strong harmonies sung to me of peace, of knowing at the end of the day that what is done is done, and what is not done is not. I had a strong physical sensation of releasing myself down into a hot epsom salt bath. And of being swaddled, wrapped snuggly in a blanket of tender consolation. I arose replenished. The verb I used as I shared the experience with others was nourished. I felt well fed, well cared for.

I've had the privilege of collaborating with the Threshold Choir on two ceremonies: one, to mark an upcoming birth; one, to honor a life that had just passed. They describe themselves as "women who sing for people crossing life's thresholds: birth, death, sickness, struggle, change, and celebration." 

We choose songs to respond to the musical tastes, spiritual traditions, and needs of those we serve. Our songs carry messages of love, strength, comfort, healing, peace, and joy.When invited, we sing in groups of two or three in private homes, care facilities, and hospitals in Portland, Oregon. We sing in larger groups at contemplative events. Through voice and song, we offer presence, care, support -- companionship on the path. Our service is our gift; there is no charge. We gratefully welcome donations.

PictureCourtesy of VanEarl Photography and Departing Decisions Guide
Invited by Angela Keinholz to participate in Departing Decisions' first annual Party of Thanksgiving, choir members offered to sing to the caregivers and community servants in attendance - not as a performance, but as a presence inviting us to be fully present. As prelude to the simple ceremony of thanksgiving I designed and led for the event, the choir sung us into attention with a gathering song. They led us and held us as a group with several more songs, asking us not to applaud them as entertainers but to join them with our ears, our voices, our open hearts. 

After the rest of our candle lighting ceremony in which we gave thanks for the families we serve in dying and death, all who serve these families, and veterans and other first responders (the gathering coincided with Veterans Day), choir members adjourned to a corner of the room where they offered a personal song bath to those who felt called to receive their gift. 

"Singing with and for each other in this way — accompanying each other through the passage-places in life with presence and song — is an ancient art, a centuries-old tradition with which we’ve largely lost contact, in our modern Western society," says the Portland Choir's Kri Schlafer. "Through Threshold Choir service, we reconnect ourselves to this deep practice. We take in the presence-connection of it as singers, and offer this nourishment to others."

When I told Kri how I'd been affected, she said, "I love that the word nourish came to you. It comes to me like that, too. Since getting involved in the Threshold Choir, I have experienced how, when we give and receive song in this way, the song is its own food group — its own nutrition stream." Another cause for thanks giving.

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With A Little Help from Her Friends

7/28/2014

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Three years ago, at the age of 34, Kim got the worst kind of news. As she wrote on her blog, Aquarius vs Cancer, "I’ve got lung cancer and I’m not very happy about it. It pretty much sucks."

Kim and I met through my dear friend Marcy. When Marcy got her terminal cancer diagnosis she became passionate about connecting with others who were exceptional - exceptional for the early age of their confrontation with mortality, exceptional for their approach to this unbidden "new normal". 

I wasn't too surprised to find an email in my in-box from Kim a few months back: "So. I'm wondering if we could meet up and talk about end of life planning? I'm just trying to get my ducks in a row."

As she'd written on her blog, "I’m the kind of girl who likes to know where I stand at all times. I’m often most uncomfortable when I don’t know what I think or feel on a particular topic or subject."

We met and agreed that I would create a customized set of questions to support Kim in thinking through what she wanted to have happen around and after her death. I lent her my copy of Stephen Jenkinson's slim work book, How It All Could Be, which he describes as "part meditation and part guided study – that begins the deep human project of learning what dying well could be, and what dying asks of us all... for anyone trying to approach dying with soul and intelligence intact."

I worried that my list of questions, coupled with the Jenkinson booklet, might produce paralysis. Not for Kim. When she found it daunting, what did she do? She invited 12 of her closest friends to come to her home on a Friday night for pizza, wine, and a conversation about death. Hers. And theirs.

I was privileged to observe this tender, brave, joy- and grief-filled gathering. They laughed, a lot. They cried. They told stories. They shared answers they didn't know they had. They wondered together. And through it all, Kim presided from a cushion on the floor of her fabulously smart mid-century living room, keeping the group working through the questions she'd culled:

Part 1
  • Discussion: What defines a “full life”?
  • Discussion: What would you do if you had one day to live? What do your answers say about your values, convictions, soul....
  • How would you describe me?
  • How would you describe my essence in one word?
  • Do any songs remind you of me?
  • Have I taught you anything?
  • What do you think you will remember most about me? What would be my legacy?

Part 2
  • Discussion: Do you want an end-of-life gathering? If so, what do you call it?
  • Do any of you want to speak* at my end-o-life service? *rules apply
  • I will be cremated. Would people like to dispose of their own bit of my ashes?
  • Would any of you want to attend my cremation?
  • Discussion: What happens when you die? When, what, and who do your opinions come from?
  • What will people miss about me?
  • Do you have any memorable moments that involve me?
  • Discussion: When does the transition from “I will die” to “I am dying” happen?

A few days later Kim reported "feeling very good about things today." She was busy typing up her notes and said, "It would have been impossible for me to get the same high quality results answering these questions on my own." What struck me most about that night was that Kim had invited us all to begin exercising our grief muscle, to cultivate this neglected capacity in the company of others. 

One more thing about how Kim convened her friends: True to her take on life, she opened the gathering not with a focus on the tragic, but with this playful, provocative point of view on the larger arc of our existence.

In my next life I want to live my life backwards. You start out dead and get that out of the way. Then you wake up in an old people's home feeling better every day. You get kicked out for being too healthy, go collect your pension, and then when you start work, you get a gold watch and a party on your first day. You work for 40 years until you're young enough to enjoy your retirement. You party, drink alcohol, and are generally promiscuous, then you are ready for high school. You then go to primary school, you become a kid, you play. You have no responsibilities, you become a baby until you are born. And then you spend your last 9 months floating in luxurious spa-like conditions with central heating and room service on tap, larger quarters every day and then Voila! You finish off as an orgasm! ~ Woody Allen

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click on Kim's epic banner image to check out her blog
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The Collective Community

4/6/2014

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PictureUnfinished Heart (c) Page Hodel
I didn't know what to expect when I agreed to offer a workshop on Creative Rituals for Times of Transition for Villages NW, the grassroots movement that supports aging-in-place. What a thrill to have more than 50 participants resist the springtime sun breaks and gather together at TaborSpace! 

And what a range of life experience they represented: divorce, retirement, facing an empty nest, coming from isolation into community, from community into solitude, the adjustments within a military family, the incapacitation or death of a parent, the death of a partner, the birth of a new business, downsizing, illness, becoming a crone - and more. 

We explored ways to mark, mourn, or celebrate these transitions using some of the framework I shared in February's post on Ritual Vs. Routine. Those observations centered primarily on the role of ritual and ceremony in focusing our intentions and providing structure that helps us to access more meaning. 

But I've spent much of the week reflecting on another powerful function of ritual: the way it connects us to each other, to our common humanity. A workshop participant put it like this on her feedback form: "From birth to death we need ritual to remind us that we are part of the collective community."

A year ago in a Memorial Day post on year-round memorialization projects I highlighted Monday Hearts for Madelene. Every Monday I, along with thousands of others around the world, get an email with an image of a gorgeous handmade heart crafted by Page Hodel in memory of her beloved partner who died from ovarian cancer at age 46; it's the continuation of a ritual she began in their courtship days. Recently Page wrote to her email list:

When Madalene died, for me there was an avalanche of grief I didn’t think I could possibly endure. My little soul just didn’t feel strong enough. There was something about the continuation of making of these hearts for her that was not only my desperate effort to keep my connection to her alive in my physical world... they are also an intuitive yet unconscious act of self preservation. I could keep her alive in my heart and mind... if I could make her a heart, then she must still be with me. 

Last Monday, Page sent out a plea for help. She invited her extended community to share their family's vintage black and white photos with her to complete an "Unfinished Heart". Mid-week she reported her astonishment at the response: literally hundreds of "stunning images" from all over the world... from South Africa to Japan to California... "The history contained in these images is extraordinary. The clothes, the hairdos, the cars, the cultural differences, yet we are all here sharing life's greatest joy, loving our families and friends. There are your parents when they were young and falling in love, the grandparents on picnics on blankets on hillsides. The babies, the loved one you have loved and lost. It's all there." 

Page's words attest to the power of the community created when she chose to share a ritual that was once between her and Madelene alone, with the broader world.
When I originally got the “message” (idea) to start sending them out in the world, it was to express this profound love that had no where to go. What I didn’t know then, but I DO know now, is that it is every email you have sent me... every word that you have typed from your desks at work on Monday mornings, some late late at night...  your sharing your kindness and love... your family stories... and now these staggeringly beautiful images... YOU ARE HEALING MY HEART.

What I am left with is this profound understanding of the beautiful power of the people we love and have loved. For some it's our blood family, for others it's our adopted family, for some, our chosen family, whoever it is, you reached out and shared what’s MOST sacred and dear to you. I AM PROFOUNDLY touched WAY deeper than I had ANY idea I would be.
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With thanks to Page Hodel for the weekly inspiration, and Lily for introducing me to Page's project. Please visit Monday Hearts for Madelene to learn more.

And thanks to Chana Andler and Villages NW for inviting me to offer this workshop, and to all of the creative souls who attended. If you're in the Portland metro area, check out this dynamic new community-building resource: Villages NW. To find out about Villages in other parts of the country: Village to Village Network. 

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Reflecting on the Power of Ceremony

3/1/2014

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PictureSpoiler alert: pregnant with possibility!
I often wish I had a magic wand, but I'm careful to remind clients that I don't. I believe in the power of ritual and ceremony, but I can't guarantee the outcome. This was especially true for a ceremony I created for "Liminal Laura," a young woman in a time of turbulent transition who chose, in her words, "to turn towards my fears and confront them head on." 

I worked with Laura to define her goals for the ceremony and collaborated with her close circle of friends on the gifts they wished to contribute. On a sweet spring afternoon in a backyard strewn with wildflowers, we gathered to witness a retelling of Laura’s story, how she got to the in-between place that was causing such pain but which she knew she needed to honor. 

To symbolize the fears she'd felt nearly smothered by, Laura burrowed into a pile of blankets and then shed them, reciting a quote she'd selected from Marianne Williamson. When she emerged, her friends bestowed on her a set of Katniss-style braids and a miniature quiver of arrows, in tribute to her fierceness and courage.

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Having envisioned the ceremony as affirming “a shift from stagnation to movement, from silence to a strong voice” we then turned to a movement exercise where each of us embodied a word written on slips of paper Laura would keep, qualities she sought to embrace for her journey forward: Patience, Fearlessness, Curiosity, Community, Resilience, Resolve, Gentleness, and Humility. We then echoed Laura's voice in a litany of reinforcement as she spoke her intentions.

We closed the ceremony with participants reflecting to Laura what each of us saw in her; she in turn shared tokens of her gratitude with us. After a rousing rendition of "This Little Light of Mine," we lit Flying Wish Papers and dug into a beautiful potluck feast.

PictureLaura with her son Ander
You can read about the immediate impact of the ceremony on Laura here. But the full impact is still unfolding. Here is what she shared with me a year later:

"Unleashing my intentions and freeing up my heart and mind to the possibilities opened up the flood gates. I feel like I set the river in motion, hopped in my boat with my paddle, and have been moving along and riding the water ever since. 

"My goals have manifested in many ways, both physically and emotionally. I secured a new job that is tapping into old passions and helping me develop new talents. I travelled to visit old friends, a journey I had feared for almost seven years, which proved to be both healing and rejuvenating. I sold my condo under the most miraculous circumstances, which allowed me and my partner to spend six wonderful months living with dear friends and then move into our own house. And this winter I conceived a baby who is expected to arrive in September! 

"It’s hard to believe this has all transpired in less than one turn of a calendar year. Yet despite all the tangible things that have manifested, the biggest, most profound ‘accomplishment’ is the sustaining calm I feel inside. A year ago, it was all I could do to stay afloat as the waters stormed around me and yet this past year has been vivid, clear and peaceful. This sense of peace has been the greatest gift, which is teaching me how to live in the moment and appreciate what each day has to offer.

"The act of planning my ceremony, working with Holly to articulate my intentions and then asking friends to bear witness to my process, was intensely empowering. The ceremony afforded me new agency in my life that I was yearning for, but did not have the courage to do alone. Picking back up after having reset my course proved to be the hardest part. The ceremony, and the support of my friends gave me the push and the momentum I needed to get back on the water."

*       *       *

My deep thanks to Laura for the privilege of witnessing and supporting her journey, and the opportunity to share her story. 



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Orphan Wisdom

2/23/2014

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PictureOrphanWisdom.com
This week I had the privilege of supporting three young women, adults in their early 30s, each coming to terms with the death of a parent who died too early, too young - in their early 60s.

The most obvious point of connection between their experience and my own is the fact of my father's death in his early 60s. But I realized as one young woman's story became two and then three, that I'm now closer in age to the parents they're mourning than to the place of bereft child. In fact these women I serve with my listening are the age of the child I myself might have had but didn't.

Understanding the passage of time and one's place in the cycle of life is perhaps more confusing when one hasn't raised children.

And so I find myself in my sixth decade wanting to know more about what I am here to do. 

"Who is doing the food making while you've been eating this whole time? Our consumptive way of living is a trespass. Grief is the awakening. Grief is a sign of life stirring towards itself." ~ Stephen Jenkinson

In April I will travel to the remote reaches of the Ottawa Valley in Ontario, Canada, for the first of four residential sessions at the Orphan Wisdom School run by Stephen Jenkinson and Nathalie Roy. 

Best known for the documentary Griefwalker about his rejection of the contemporary "death trade" in which he worked as the director of a major palliative care program, Jenkinson poses radically provocative questions about how we're living our lives and the consequences that has for our deaths.

If you're interested, watch The Meaning of Death, a 5 minute clip, and another short outtake, linked below. I'd love to hear your thoughts.

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Click on the image to go to Orphan Wisdom to view 5 minutes of previously unreleased footage from the filming of Griefwalker.
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My Friend Marcy Has Cancer. I Don't (Yet).

12/14/2013

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As a Funeral Celebrant and organizer of the PDX Death Cafe, death - and what happens before, during, and after - is on my mind quite a lot. And so I thought I should share an essay I started several years back about the big questions. The journal Cactus Heart was good enough to publish it this fall. Rights reverted to me, thus I'm able to post it here, but I encourage you to click on the cover image and order a copy of your very own.

Read through (or scroll down) to the very end for more about Marcy.

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My Friend Marcy Has Cancer. I Don’t (Yet).

I.

As the crowd of thousands marched downtown to the site of the Occupy Portland encampment, I left to run an errand. I’d been holding a handmade cardboard sign: “My friend Marcy is WAITLISTED FOR CHEMO – Thanks, Wall Street!”  Many of the people reacting to my sign – whether supportive or averse – thought I was the one waiting for chemo. Even the AP photographer who snapped the picture of my sign that ended up on Internet sites around the world asked, “Is that about you?”

They thought I was the one with cancer. In the coming days, I began to wonder.           

An hour after I left the rally, my belly began to feel like an air pump was inflating a basketball inside me. And I grew cold, so cold, despite my wool socks and heavy Guatemalan wool sweater. My teeth clacked and chattered. By the time I got home from my errands I had to unbutton the jeans that had required a tighter belt notch only that morning.

I forced my stiff, aching muscles up the stairs to my house and cocooned myself in a wool blanket in front of our fireplace. When the wracking chills still wouldn’t subside, my partner Amber found the thermometer. We were stunned when it registered 102.7 degrees. Must be broken. She took her own temperature – normal.

It was about 7:00 p.m. when I reached my doctor, who found it very odd: high fever and severe bloating, but no nausea, vomiting, or diarrhea, which you’d expect with food poisoning or a flu. We agreed that I’d try Tylenol and Gatorade and go to the ER if it got worse.

I woke up in the morning without a fever. But the bloating – I was still so unbearably full I found the idea of eating preposterous. I headed in to see my doctor. They took an abdominal X-ray and sent me home. Once they viewed the film, they wanted an ultrasound. I drove out in Friday afternoon rush hour having drunk the requisite 32 ounces of water – four tall glasses of liquid on top of the basketball in my belly. I was in agony.

I figured I ouldn’t get the results until Monday, but my doctor called and left a message around 6:00 p.m. It wasn’t a reassuring “all clear.” His voice sounded concerned. He told me to call him on Monday.

II.

Marcy’s unexpected diagnosis of Stage IV ovarian cancer had ripped the security blanket off our cozy community. In her early 50s, the poster child for effortless exercise and wholesome diet, Marcy exemplified clean country living. I had barely paused to admit my own emotional response to the pronouncement of her terminal disease. I had swung into action, attempting to impose order on this chaos by taking notes at her doctor’s appointments, organizing brigades of helpers, setting up communications systems.

The Monday morning after my ultrasound, I drove to Marcy’s house to accompany her and her husband, Mike, to see her surgeon, a highly respected gynecological oncologist on whom she had pinned her hopes.

During Marcy’s diagnosis 18 months earlier, Dr. C had gone in through her belly button to remove the small amounts of disease in her abdomen – debulking, they call it – but the cancer had already spread to her chest. Although the surgery and subsequent chemo had produced a blessed remission, her cancer holiday was over.  The disease was clearly on the move once again. Marcy’s meeting with her medical oncologist had left her in despair. She wanted the surgeon to offer something more aggressive, to deliver some hope through scalpel and sutures.

Marcy wore one of her trademark loose skirts. Despite her willowy dancer’s frame she had always favored prairie skirts that allowed her unrestricted movement (and she was constantly in motion). Just before her diagnosis, she had shocked all of her friends by favoring chic new slim corduroy jeans. But the bloating that accompanied her chemo had become, in cancer-speak, her “new normal,” and now it was back to skirts. I was wearing a loose skirt that day, too, to ease the bloat in my own belly. And to hide it.

Over the weekend I’d received an email from one of the national ovarian cancer listservs I had subscribed to, promoting the checklist of early detection symptoms we all need to internalize, like the monthly breast self-exam we were trained to do in the early days of the pink-ribbon movement:

Symptoms of Ovarian Cancer
  • Bloating
  • Pelvic or abdominal pain
  • Difficulty eating or feeling full quickly
  • Urinary symptoms (urgency or frequency)
I said nothing of my weekend worries to Marcy and Mike. An extrovert, I’m used to sharing (perhaps over-sharing) the details of my daily life. But not emotions – especially fears, especially existential fears of the sort that if spoken you imagine might obliterate you through their very utterance. Fears like: could two friends end up with the same supposedly rare cancer? Fears like: am I counting on my friend’s cancer to somehow provide me with immunity? Fears like: am I going to worry myself into getting cancer if I don’t already have it?

I was happy to stuff my own unknowns into the glove compartment for the morning; I preferred the immediacy of their fears to my own. I clamped down the impulse to distract us all with small talk or spiritual-silver-lining reassurances. We drove to the appointment in shared tense silence.

Marcy’s meeting with the surgeon delivered further devastation: he had nothing in his bag of tricks to help her. She fled the claustrophobic confines of the consultation room as soon as he left. I waited to get the paperwork and found Marcy and Mike in the parking lot. If I’d been unsure about conversation on the way there, I knew without a doubt there was nothing I could say now. Marcy was in full internal lockdown, desperate to be out of the car and back in her home doing the touchstone rituals she had devised to help her tolerate the intolerable.

As I pulled into the driveway she opened the door, “Sorry… rude…by myself.” She fled, with Mike not far behind her. I sat in my car getting her records release documents in order and offered a few inadequate words to Mike when he reemerged to fetch the documents. Then I pulled around the corner and called my doctor, expecting to hear reassurance in my ultrasound reading. Instead he told me there was a mass over my left ovary. He wanted an MRI to provide more detail. But first I should get to my gynecologist for an exam.

III.

Cancer World. It’s how writer Steven Shapin describes our modern existence in his review of the book “The Emperor of All Maladies: A Biography of Cancer” by physician Siddartha Mukherjee. Mukherjee calls cancer “the quintessential product of modernity.” Modern advancements mean more of us have cancer. We now outlive the diseases that killed our forebears before they had the chance to get the Big C. And the toxicity of our environment surely breeds more malignancy. How could it be coincidence that my father and his sister’s husband both died young of the same rare brain cancer, having shared no genetic link, only mutual employment in the family’s fuel tank cleaning business during my dad’s summer breaks from college and medical school?

Shapin, in The New Yorker (Nov. 8, 2010), argues that the modern impact of cancer goes beyond those who have the disease. He writes that historically, “The agonizing manner of cancer death was dreaded, but that fear was not centrally situated in the public mind—as it now is.” Shapin describes “two new kinds of beings in the modern cancer world.” One is the lucky patient who is now able to manage her once-fatal cancer as a chronic illness with miracle drugs like Gleevac. But Cancer World is also inhabited by the rest of us who are waiting and watching, “legions of the screened and the tested, who become more and more aware of the dangers battering away at their cells from the external environment and lurking inside, encoded in their genes.”

Just a month before my high fever and basketball belly, a surgeon excised a bad mole from my right tricep. The cells weren’t cancerous, but apparently that’s where they were headed. The mole is gone now, clean to the margins, but even in its absence, it increases my chances of developing a melanoma. So does the fact that my dad had a melanoma (separate from his brain cancer). And that my mom had another form of skin cancer, now known to be predictive of increased risk of the deadliest kind. My annual preventive visits to the dermatologist are now on a six-month schedule.

I’m a bit of an early detection nut. I’m not a hypochondriac (am I?); I don’t spend my time imagining myself filled with disease. But I don’t hesitate to call the doctor when I’m not sure what’s going on in my body. And I do every test they suggest.

I’m the daughter of a doctor, a man who knew he wanted to be a doctor as a young boy despite neither parent having graduated from high school. “He never went through the I-wanna-be-a-fireman-or-cowboy phase like the other little boys,” his older sister told me. “He just wanted to be a doctor.”

Thus I was born into my faith in the medical system. Not a blind faith: I believe that if you tell the doctor what’s going on, he or she will work with you to figure it out and will try to make you well or keep you safe. I have a strong sense of entitlement, being raised the daughter of a doctor, white and well-educated. They work for me, these doctors and diagnosticians. If I have questions, they will answer them.

And so I’ve been thoroughly probed and scanned and dissected. A lump removed from each breast in a procedure that strapped me to a narrow table, my arms pinned out to either side, crucifixion-style. A colonoscopy in my mid-40s. Suspicious moles carved out and shipped to the lab. X-rays, a CT scan, an MRI, and a PET scan to follow a nodule in my lung (nodule: another word for tumor, but writing tumor sounds melodramatic given its eventual disappearance).

And four years earlier I had been diagnosed with a bumper crop of uterine fibroids – inside my uterus; hanging from the outer wall on a stalk like a banana; embedded in the wall of my womb. Because I never had the heavy bleeding or cramping that plagues many women with such growths, the obvious solution, hysterectomy, seemed like overkill to me (fibroids are the leading cause of hysterectomy in the United States). But the bulk of my fibroids, equal to a six-month pregnancy, became tiresome. I felt obstructed from within when I did certain yoga poses, when I bent forward on my bicycle. My gynecologist warned of bowel and bladder difficulties; my chiropractor thought my breathing could be impaired and my skeletal system skewed.

I researched my options and opted for an embolization procedure to reduce the bulk without surgery. A radiologist inserted a catheter through my femoral artery and propelled microscopic pellets through it to block the blood flow from reaching the fibroids. I pictured them withering on the vine. A year later, my gynecologist reported with some amazement – she’d been a skeptic – that they had reduced in size by 50 percent, the optimal result expected from the procedure. Since then, I’d thought little about them, except during my annual pelvic exam as my gynecologist continued to marvel about the fibroids’ reduced dimensions.

IV.

The day after I accompanied Marcy on her futile pilgrimage to her cancer surgeon, I lay on my gynecologist’s exam table. She asked the question that seemed to solve the mystery of what had happened five days earlier.

“Did it feel like what you experienced when you had your embolization?” Yes, I realized, it was exactly like that. I don‘t know why it hadn’t occurred to me sooner. The procedure had involved an overnight stay in the hospital to control the high fever and severe pain that accompanies the death of the fibroid tissue when its blood supply is blocked. Now my gynecologist studied the original MRI that had guided the embolization and felt confident that it was consistent with the ultrasound that had alarmed the radiologist and my primary care physician. She would send both scans back to the radiologist to be sure.

It made sense to me now: some of the remaining fibroid tissue had gone into a death spiral. As it died – became necrotic, to get technical – the sanitation department kicked in. Fire up the incinerator (hello, 102.7 fever) and bring in the scrubbing bubbles of inflammation.

Still, I was relieved to get the call from my gynecologist three weeks later confirming that the radiologist had finally issued the all-clear. For now, anyway. The mass that had rung the alarm bell appeared consistent with the early pictures of the fibroids. But as with my dermatologist, my monitoring interval is now at the half-yearly rather than annual mark.

V.

My friend Marcy has cancer. I don’t. Yet. I belong to that tribe born of modern medical diagnostics: the precancerous. The Worried Well.

Six months after my belly bloat episode, on the eve of Marcy’s 53rd birthday and the second anniversary of her admittance to Cancer World, I joined her and three of her closest friends for a concert by N.E.D.  “N.E.D. is cancer talk,” Marcy explained in her email invitation. “It’s what we all want to hear after a CT scan – that that we are No Evidence of Disease.” By definition, Stage IV cancer is considered incurable, so the women in Marcy’s cancer network strive instead to “dance with N.E.D”.

Made up of six full-time women’s cancer doctors from around the country, N.E.D.’s slogan is, “Breast cancer has a ribbon – but gynecological cancer has a rock band!” The theater buzzed with snappy women dressed for a party. The band started playing – original hard rock ballads belted out by the lone female doc, a hyper-athletic cross between Natalie Merchant and Janis Joplin – songs of love and heartbreak for the ovarian and uterine cancer patients whose disease inspires a rock band but very little funding for research.

They brandished their guitars and drums and microphones and filled our ears with the beat of the human drama – the full catastrophe as Zorba the Greek called it. Marcy and her three younger pals hit the dance floor and threw themselves into it, giddy, gossiping, mugging for photos. I couldn’t quite go there. My mind was busy worrying, calculating how I could get Marcy a doctor like one of those up there on the stage, a rock star doctor who would feel as passionately about saving her as I did. And my heart was stuck on the story she and a support-group friend had told us before the concert started. A year before when N.E.D. had come through town, the youngest member of their ovarian cancer group had shown up and danced her ass off. She’d been on her feet the whole show, having the time of her life. And then she’d gone home and died – that same night.

Anything can happen at any time. Watching all my risk factors – submitting to the twice-yearly exams and all the scans and probes, keeping my body strong, and eating as healthfully as I can – provides absolutely no guarantee that I won’t get cancer or any other illness. Maybe a serious illness isn’t even in my cards. I could get struck by a car and killed as I ride my bike to Marcy’s house.

I reside in what Shapin calls “the risk-factor world [which] holds out hope for avoiding cancer while recruiting masses of us into the anxious state of the ‘precancerous.’” The insurance companies know that’s my address, too. Because I’ve done all the diagnostic tests recommended to me, my only option for individual coverage, pre-Obamacare, was through the state high-risk pool.

My friend Marcy is dying. I’m dying too. We all are. She knows what’s going to be on her death certificate. I don’t. The lumps in my breasts, the moles, the fibroids, the solitary pulmonary nodule – they’re all benign, every one of them.  So far.

During the episode of mysterious high fever and miserable cramping and the escalation of doctors’ concerns, I wasn’t afraid that I was going to die. I’m too good of a rational risk-calculator for that.

My fears reside at a deeper level. Am I big enough, small enough, brave enough, smart enough to proceed with open heart and open eyes through a world that gives Marcy cancer and me just a small dose of necrotic tissue? What sense can I make of a world that gives and takes away so randomly, that offers such exquisite beauty and love and joy and deals out such indiscriminate suffering? Can I make peace with a world that offers certainty, ultimately, about only one thing: my death, and the death of everyone I love?

Questions, I know, no MD or MRI can resolve.

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With thanks to Marcy Westerling, friend and teacher. Please check out her blog and share it with others.

Livingly Dying: Notes and Essays on Daily Life with Terminal Cancer

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Riding Boots RIP

11/6/2013

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I'm a terrible pack rat. I still have every love note my high school boyfriend and I passed back and forth nearly four decades ago. To celebrate my 30th high school reunion I couldn't keep myself from embracing yet another vestige of the past - the Frye boots I'd worn back then. No, these aren't the same pair, just the same idea. All the excellence of a Frye boot with the added bonus of nostalgia, a connection to what I can barely remember but somehow don't want to forget.

And so I'm always fascinated by people who are able to clear themselves of clutter, who shed their skin and don't sit around in the desiccated dust of it.

While I travel this month, blissfully living with the bare necessities as the rest of my crap makes do without me, I thought you'd enjoy the story of a ritual designed to say goodbye to the stuff no longer needed.

Click to read A Funeral for Riding Boots by Jacki Hollywood Brown, on unclutter.com. How have you bid farewell to your well-loved things? 

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Forged from the Flames of Divorce

7/25/2013

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How do you release yourself from a marriage once it’s over but the wreckage remains? I was recently privileged to hear the story of a woman – I’ll call her Linda – who designed three rituals of release over the course of several years of grief and healing.

On what would have been the 10th anniversary of her marriage, about six months after her husband had left her, Linda invited three friends to a nearby jewelry store where she melted down her wedding ring. 

Listening to Shaina Noll’s “How Could Anyone” (“…ever tell you/ you were anything less than beautiful…”), they lit a candle. Linda used a jewelry torch to transform her wedding ring back into its elemental state: a pebble of pure gold. She then shared her story with her friends. 

Ten years ago we exchanged these rings as we took our marriage vows. The rings symbolized at that time our love and commitment to one another. We had picked them out together and they reflected the joining of our lives, our union of marriage, and our intentions to love, cherish and be faithful to one another. That was 10 years ago and our lives have moved in different directions, taking different paths…. At this juncture my wedding rings do not hold for me the meaning they did 10 years ago. As I partake in this ritual of melting the gold of my rings, I further let go of the relationship for which they symbolized my commitment. I step fully into this new chapter of my life with greater self-understanding and a solid commitment to remain true to myself in my future connections, relationships and lifestyle. Additionally, I take with me fond memories, cherished times and lessons learned from my marriage. To symbolize this I will carry forward the two small diamonds from my rings to be integrated into my new purple sapphire ring – colors and stones of healing and strength – bringing what was good in my marriage forward into my future life.    
Picturenew ring, gold pebble from wedding ring
The ritual concluded as Linda slipped onto her finger the new ring she had designed, incorporating two small diamond chips from her engagement ring. Then they broke open a bottle of champagne.

Some months later, Linda and her ex-husband met in their therapist’s office to exchange words of release and forgiveness. They used the unity candle from their marriage to light two “new beginnings” candles, then extinguished the marriage candle together. Linda's vision was that this would “symbolize the taking of the positives, the good memories, and achievements from our marriage as enlightenment and strength as we now pursue different paths.” 

These rituals were no magic wand. They didn’t erase the pain, but they did provide a sense of agency and connection during a life trauma that can be accompanied by deep feelings of helplessness and isolation. They marked a moment in time, providing witness to what was true in that moment, summoning the strength and clarity of intention needed for the next phase of the healing journey.

Looking back nearly two years later, Linda says of the joint ritual in the therapist’s office, “I was perhaps kinder and gentler as I sought some kind of ongoing hopeful connection; in later reflections I realized I had deeper grief and anger to work through.”

As she continued to work through her grief and anger, she designed a final ritual, a homecoming into the circle of women friends that had been strained by the dynamics of the divorce. They gathered for a slumber party, putting to rest another step along Linda's path to embracing her beautiful wholeness.

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"How could anyone ever tell you? 
You were anything less than beautiful... 
How could anyone ever tell you? 
You were less than whole... 

How could anyone fail to notice? 
That your loving is a miracle... 
How deeply you're connected to my soul..."

~ Shaina Noll’s “How Could Anyone” 

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*       *       *

My deep thanks to "Linda" for sharing her story of courage and creativity. Please let me know if you have a story to share.

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Emily's Gratitude Ceremony

7/19/2013

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PictureFrom "Emily's Transformation" crowd-sourced fundraising page
“This will be a celebration of the power of community.” 

With these words Emily Pittman Newberry invited friends and supporters to a ceremony to celebrate her healing after gender confirming surgery. This Gratitude Ceremony was for all who contributed in some small or large way to support her journey.


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“My surgery is complete and I am well on the way to healing. I could not have done this without the help of the communities to which I belong. Please come to this celebration and accept my thanks. I want everyone to be there. Did you organize an appetizer party or contribute money? I want you there. Did you help out with logistics? I want you there. Did you send me your positive thoughts or prayers, pass on the word to your other friends or use newfound knowledge about transgender life to educate someone? I want you there. Please bring a single flower of your choice to place in a community container.”

On a Sunday afternoon, 30 friends came together in a circle to accept Emily’s thanks and, as she puts it, “to contemplate the importance of what we did together….my successful campaign and healing was uplifted by a sea of love.” As one expression of her gratitude, Emily announced that she would be paying it forward by helping a dear friend launch a similar campaign to raise funds for her own gender confirming surgery. Emily also sent everyone home with two symbols of her appreciation.

Emily offered the first, a signed broadside with three of her poems, to “serve as a reminder of the beauty of love when materialized in the things we say and do. A reminder that may help us to be mindful of the ways, small or large, that we can act lovingly every day.” 


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The second, a single flower from the ceremony’s collective vase, would die in a few days, Emily reminded everyone. “As part of the compost it will return to the earth and help to bring new life into being. Similarly, our temporary community is passing away. Each of us will act like one of the molecules of the flower, returning to the web of relationships in which we are immersed. We will each find some way to bring about new life, mindful of the never-ending cycle of which we are a part.”

Life-Cycle Celebrant Dannielle Yates, a member of one of Emily’s women’s circles, helped create the ceremony. "Emily’s courage and strength are an inspiration," Dannielle says. "It was an honor to witness and support her transformation on the spiritual, physical, mental and emotional levels. It is easy to feel limited when caught in the ‘I have to do it myself’ belief. Once Emily surrendered to the vulnerability of asking for help, having faith that others would step forward to answer the call and knowing she was worthy of it, a powerful community rallied to make it so.” 

*        *         *
Thanks to Life-Cycle Celebrant Dannielle Yates for suggesting Emily’s story, and to Emily for sharing it. Visit Emily's indigogo page to learn more about the politics surrounding insurance coverage of gender-confirming surgery.


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Click on the book cover image to learn more about Emily’s book of poetry, Butterfly a Rose.
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