Holly Pruett
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RIP on Facebook

2/28/2015

 
Pictureclick photo to learn about Donna
Today when I woke up, Facebook reminded me that it's my step-brother Joseph's birthday. It also reminded me that my friend Donna Parson is dead. Of course, that's not what the Facebook notification said. It told me only that it's Donna's birthday. Donna died last December from complications following heart surgery. 

The year before, she had accompanied me and other members of the Karuna Foundation board of directors to Bhutan. Traveling there had been on her bucket list, but aside from scratching that itch, her presence on the trip added depth to our understanding and warmth to our group dynamics.

While I'd only known Donna a bit more than a year before she died, she deeply influenced many of those who've had a deep influence on me. I miss her. I miss the opportunity to get to know her better, to learn from her, laugh with her, read her novel about her Estonian ancestors.

I appreciated Facebook for stirring the longings that connect me to Donna's life - but I also cringed. Would there be posts on her page from people oblivious to the fact that Donna could no longer read their birthday greetings? Facebook has been much in the news for the modern dilemmas of on-line memorialization.

I clicked over to her page and found perhaps a few of those, but mainly lovely messages of remembrance. People visiting her page much as once we visited a gravesite.

Donna's daughter Joanna offered a lively list of ways to celebrate Donna today. May we all be remembered so well.

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Breaking the Silence

2/22/2015

 
PictureBaby Holly with photos of my father's family
When I went to the grief altar, I thought I was ready. But there was one aspect of what happened there for which I was entirely unprepared.

A grief altar - this in and of itself was a foreign concept - literally. A tradition of the Dagara people of Burkina Faso in West Africa, brought to the grief-illiterate West by Sobunfu Some. Sobonfu's name means "keeper of the rituals". For the past twenty years she has shared the spiritual wisdom of her people with the West, through writings and rituals such as the one I attended at Breitenbush Hot Springs earlier this month.

Sixty of us gathered in the main lodge after dinner on Friday. In one large circle, in a space skillfully held by Sobonfu and her helpers, we began to voice something of the griefs that had brought us there. Suicide, war, life-changing tragedies, terminal illness, addiction, betrayal, abandonment. So many ways we'd been hurt, hurt others; so much pain and sorrow; such longing for reconciliation, redemption, relief. The first breaking of the silence.

The next morning after she shared her framework of beliefs around the types and stages of grief, we met in small groups to share a bit more of our stories. Sobunfu was clear: this was less about what we needed to learn about each other, and more about our grief finding its voice.

Then we rolled up the rugs, cleared the room, and worked in teams to prepare the altars. The forgiveness altar, draped in greens and blues on one side of the room, and the red- and yellow-swathed ancestors' altar on the other held items we'd brought from home, along with color coordinated flowers and candles. The grief altar at the base of the room was constructed out of fresh fir boughs: a three-sided teepee open to the front, a row of white candles standing sentinel across the opening; inside, a vase of white flowers, a white candle, a square of black cloth on the ground.

Sobunfu had instructed us in how to prepare a bundle containing objects that represented each of our griefs, along with something that could stand in for the unexpected griefs that might arise. With each object, we were to speak out loud, with great specificity, the dimensions of that particular grief. She had modeled several examples. "The grief of a friend dying from cancer?" I asked. She spun out a dozen sentences, all precisely accurate articulations of the inchoate pain I've been carrying for the five years since Marcy's diagnosis. After finding these words we were to wrap the objects in a cloth tied with string.

With our bundles prepared, we would enter the heart of the ritual. Sobonfu and her helpers maintained a drum line at the back of the room. For the next nearly 24 hours each of us, as we were moved, would go to the forgiveness altar, the ancestors' altar, or the grief altar. If not at one of the altars, we were supporting those at the grief altar through sitting behind another (each griever had one or more "followers" whose role was to witness but not sooth or stop the flow of grief) or by joining the drummers in a continuously sung song that vocalized the promise of carrying each other.

Picture1st grade Holly
Sobonfu had warned that the ritual would begin as soon as we registered for it. Indeed, by the time we walked single-file down the center of the room to toss our bundle onto the black cloth in the center of the grief altar, I felt ready. Ancestral grief, grief I absorbed in my mothers womb, grief I'd carried more than 50 years along with the grief of losing my father again and again, the grief of my own actions I've lived to regret, the grief of others in my community or whom I've served - it was ready. 

Yet as I lowered myself to a cushion in front of the grief altar, a "follower" behind me ready to offer support, I was entirely unprepared for what was happening around me. Other mourners had begun to wail, to shriek, to scream and curse. It came to me as one of the unexpected griefs Sobonfu had predicted: the grief that in my life, in my family, grief has always been so silent. So. Silent.

In that space in that lodge before the grief altar I was pierced by the memory of the two times I'd heard the sound of grief growing up, two times my mother issued the unedited primal scream of a wounded animal. The first time, she was alone in our basement. The second time, in bed with us, her grade-school daughters, on the night my father finally left for good.

Those moments broke the intergenerational family code. I feel, even now, writing about it, a quickened pulse, a freezing in my chest. Don't feel. We don't know what to do with these feelings. Stay quiet. Don't make trouble.

Picture5th grade Holly with best friend Lisa
I went to the grief altar again and again over that weekend. I sobbed, I spoke a few words aloud that needed to be said. I experienced the grace of being held, having my hair stroked, having another literally have my back, getting everything I needed from this ephemeral village of support as I named and felt and released these griefs. And I experienced the grace of witnessing and supporting others in their grief - loud, messy, frightening grief - without having to fix it. 

I spent a lot of time at the forgiveness altar, too. I'm still trying to make friends with the child pictured here, the one who was trying to give voice to the grief all around her without a village that knew how to listen. 

Love Letters

2/14/2015

 
One of the dearest delights of my Celebrancy practice: the gift of hand-written notes in my mail box.
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Thank you so much for creating such a beautiful ceremony for our wedding, so exquisitely unique and personal. Thank you, too, for being so patient with us before the ceremony. Your calm approach was much appreciated.
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We are so fortunate to have had your help creating such a wonderful tribute and celebration of life for our very special mother. Her memory will always be a blessing for us and she would have enjoyed knowing you!
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Thank you for the beautiful burial service for my mother. So many people have told me how lovely it was. Your kindness and gentle guidance make the whole process so much easier and more rewarding.
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Thank you for all you have done to help us in the process of saying goodbye to someone we love so much. The way you worked with us was very impactful, meaningful, and special.
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Thank you for that most beautiful Remembrance Ceremony last month...it went a ways in soothing this grieving daughter's heart.
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Words cannot express our gratitude for your gentle and compassionate guidance through this difficult time. Thank you, not only for supporting us, but for seeing and honoring the beautiful and complicated woman our mother was.
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I can't imagine trying to do this without you. With your help, my wife's vision of her service was truly realized. Thank you for all the listening + caring + support. I feel like I was loaned a good friend for a couple of weeks and for that I will always be grateful.

I Am With You

2/5/2015

 
PictureClick our cute photo to go to Marcy's blog
This week, while my friend Marcy Westerling lay in a California hospital recovering from her latest foray to the far frontiers of medical research, I received a package in the mail containing two signed copies of a book that features Marcy's Yes Magazine essay on Livingly Dying. 

At Marcy's request I too submitted an essay for the anthology, I Am With You, Love Letters to Cancer Patients. Reading my piece now, on advocating for a friend, I think it contains plenty of good advice which I hope will empower others to step up. 

But it also reminds me of how much doing helps me cope with the anxiety, confusion, and grief of having a dear friend receive her death sentence. Being with that reality, being a friend first and foremost, is often much harder than executing a list of practical tasks. 

As a coda to the essay I was asked for a short list of "what gets me through the angst of cancer." I wrote:

1. Being active: doing what I can to ease the suffering of those living with cancer.
2. Remembering well: honoring the memory and legacy of those who’ve died, keeping them alive in the world through valuing all that their life and death nourished.
3. Getting ready: learning everything I can about living with and dying of cancer, and how to grieve the sickness and death of loved ones, to become more skillful at living with a heart broken open by it all.


Becoming more skillful at living with a heart broken open by it all - that is a work in progress.

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No Credentials Required: Advocating for a Friend with Cancer 
by Holly Pruett

Ever since funeral directors offered to "undertake" whatever families couldn't handle, care for our beloved dying and dead has become the purview of professionals. These days, specialists function more like “partialists”. For the newly diagnosed and those living with a terminal illness, who keeps track of the big picture? Who helps navigate the whirling maze of doctors, pharmacies, clinical trials, treatment appointments, complementary care, and insurance coverage, not to mention basic household management?

It’s easy to feel intimidated by the complexities of the medical-industrial complex; easy to feel defeated by a terminal or life-threatening diagnosis compounded by a seemingly endless array of needs.

That’s why we, friends of those living with dying, need to step up. In 2010 my close friend Marcy Westerling was diagnosed, out of the blue, with Stage IV ovarian cancer. I’ve been privileged to be by her side from the first bleak night after she received her diagnosis, alone in her car on the side of the highway. Her suffering sadness me deeply; the chance to “do something” to ease the way provides some measure of solace.

Of the various forms of support I’ve helped put in place (detailed below), what Marcy has valued the most is direct advocacy with the system to cut through its red-tape and endless denials. In her words, she’d like to see more of us “stubbornly pushing and pushing and meeting all the insipid and occasionally useful demands of the system” to get our loved ones into the best trials and providers. Taking on the calls and faxes and tracking, telling the back-story again and again, asking about things that seem off the table – what Marcy describes as “the things that would have overwhelmed me on my own and overwhelm most peer patients I know as they settle for what is offered them versus what might benefit them more.”

Here are some of the practices that have helped us, Marcy’s close circle of friends, advocate on her behalf and walk with her into Cancer World.


1. Assemble a Health Profile – Chances are, a second opinion is in order, along with applications for clinical trials, and access to any number of other providers. As a friend, you can help by pulling all of the information together into a single document. This Health Profile should include the person’s date of birth, spouse, contact information, and insurance policy numbers; their diagnosis (using specific clinical language); details of all treatment to date; results of all tests; and contact information for all members of their health care team. Once assembled, this document should be kept up to date and furnished to any new or prospective members of the health care team.


2. Wrangle Red Tape – The search for optimal treatment may include switching among providers. This will necessitate record transfers, determination of eligibility, scheduling of appointments. With a signed release of information designating you as friend/medical advocate, you can make these calls and order these record transfers on their behalf.

3. Set Up a Communications System – Receiving the well-wishes of a large community of concerned people can be as burdensome as it is comforting for those who are seriously ill. It’s hard enough to keep one’s own head above water. Taking care of others’ need to know what’s going on, to process their own grief about the diagnosis, is often more than the ill person can handle. At the same time, if the person’s community is to support them through sickness and even dying, that same community needs care and feeding. As a friend, you can attend to the needs of the broader community by setting up a communications platform like Caring Bridge. This enables updates to reach a broad number of people, and for those folks to post their love and prayers without expectation of a response.

4. Coordinate Support – Your loved one may need meals cooked, errands done, rides provided. An on-line tool like Lotsa Helping Hands can streamline messages about what the needs are, providing automated reminders for those who sign up to take care of specific tasks.

5. Research Options – Are there clinical trials that should be considered? Other providers who might be a better fit? Services that could ease some of the burdens related to treatment, like housing and transportation? As a friend, you can take on these research tasks, using the internet and the phone to track down answers.


6. Provide Eyes & Ears – No one should go to a doctor’s appointment alone. The company of a spouse or family member may be comforting, but that person may be too caught up in their own secondary trauma to listen well or take good notes. As a friend, you can help by discussing in advance the goals for the appointment, bringing a written copy of all questions, writing down every word of what’s said in the appointment (alternately, asking the doctor’s permission to record it with a smartphone), paraphrasing back all key points to confirm understanding, and then writing up a summary of the appointment afterwards.


Doctors, social workers, counselors, nutritionists, acupuncturists, chaplains – all of these professionals with impressive initials after their names have vital roles to play. Equally important, though, is the role of medical companion – the friend who shows up and helps to carry some small portion of the load.

The skills required are no more than basic organization, ability to follow-through, and respect for the wishes of the one who is ill. What you don’t know how to do, such as using some of the web-based research or communication tools, you can recruit someone who does. The most durable support is provided by a team, with one or two people acting as team leaders to coordinate the division of labor.

The tasks described here can be time-consuming, but the rewards are invaluable. From helpless to helpful; from despairing to engaged; from isolated to connected – acting on support of your sick or dying friend is time you will never regret spending. Walking by Marcy’s side since her diagnosis has taught me so much about life, death, friendship, and myself.

For those who are ill, may you have friends to companion your every step.

*          *          *

Contact Nancy Novack at [email protected] to obtain copies of I Am With You: Love Letters to Cancer Patients to share in your community.

Read another essay I wrote on a different dimension of Cancer World, My Friend Marcy Has Cancer. I Don't (Yet).

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  • Holly Pruett Celebrant LLC – Creative Life Ceremonies from Cradle to Grave
  • Certified Life-Cycle Celebrant ® | Funeral & Wedding Officiant | Interfaith Minister
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