Darien, Darius, and Floyd

Amazing stories are bubbling up from readers of Living Consciously, Dying Gracefully. On Christmas Eve Nancy & I had the honor of being interviewed on All About You, the blog radio show of Darien Marshall and Darius Jones from Philadelphia. As the program neared the end (you can listen to it here), our hosts told us about their friend Floyd who had suffered a stroke. They encouraged Floyd to read the book, and he was so inspired by Diane’s journey that he has started a support group for people with strokes, much as Diane had started a cancer support group in her hometown.

When we hear stories like this, we feel grateful that Diane’s book can inspire people to live more fully and (in her words) “more heartfully.” Diane would be thrilled to see the good works and deeds springing from her decision to be open about her whole cancer journey.

Becky

P.S. from Nancy:
Darien and Darius, who have never believed in guardian angels, have decided that Diane is now their guardian angel. Perhaps that’s because for the first time in their lives, they cried while reading a book.

Embracing Life

A few years ago Nancy and I learned a lesson that speaks to the heart of Latin culture: It is more important to spend time with friends than to complete a task. A Costa Rican would never hesitate, as I did then, if a friend dropped by and said, "Come on, let's go see the new shop up the road!" The opportunity to be with a friend is precious and should be seized—not to avoid work, but to embrace life.

We were reminded of this lesson once again. We leave our home on Isla Mujeres, Mexico, tomorrow and we have a to-do list up to the ceiling. A friend is having a gathering at her house this afternoon and we have been saying for days “We’ll try to make it, but we have a lot of packing and last minute chores to do.” We have had workmen in and out for weeks, and just this morning we had the broken outside doorknob replaced.

As Nancy was readying an email with our regrets this morning, I said, “Wait. Remember what we learned in Costa Rica.” Nancy gave me a significant look, knowing just what I meant, and immediately changed the email to express our delight in attending.

Spending time with friends is more important than any to-do list. Chores will get done, and if not, the world goes on. No task is worth missing an afternoon deepening the connection with friends old and new.

Becky

From the Start Consider the Finish

Question: What is the difference between palliative care and hospice care?

Answer: Palliative care offers pain and symptom management for people at any time during an illness. Hospice care seeks to ease pain and suffering for terminally ill patients.

This easy-to-understand explanation comes from the new book From the Start Consider the Finish: A Guide to Excellent End-of-Life Care (Outskirts Press, 2007). It’s a collection of true stories and practical advice written by attorney Susan R. Dolan and her clinical psychologist mother, Audrey R. Vizzard. Both authors are also nurses and hospice volunteers.

In 17 short chapters, they cover everything from Managing Pain and Funeral Plans to What It’s Like To Die. One of my favorite chapters, the Pleasure Diet, advises that terminal patients be allowed to eat whatever they want. That’s how one man who had stopped eating got his final wish: a tall, cold beer. “Ten minutes later that man died with a smile on his face” (84).

I found myself filled with admiration for Susan Dolan’s extraordinary mentor, Divina, a smart, tough, funny, and compassionate hospice nurse. I also admire Mollie, the social worker who threw herself over the body of a dead hospice patient to prevent paramedics from performing CPR until the DNR--Do Not Resuscitate--order was found under the kitchen table. (Becky and I recently learned that in some medical facilities, the term “DNR” is being replaced by “AND” -- Allow a Natural Death.)

“Doctors Are Human Too” was one of the saddest chapters for me. A usually decisive doctor agonized at her father’s hospital bedside over whether to remove his ventilator. When the author suggested hospice care, Dr. Lucie said that would feel as if she had failed. But she started to question all the times she had withheld hospice referrals from her patients, recommending instead one more aggressive treatment. Susan Dolan notes that many doctors “overestimate the length of time their patients have to live, thereby depriving them of the benefits of hospice” (79).

Dr. Lucie’s father had neglected to complete an advanced directive or have a conversation about how he wanted to be treated if he was unable to make decisions for himself. Most people avoid talking about their own death or making any plans for it. The authors reiterate the importance not only of written documents but of ongoing conversations with loved ones about our final wishes. Even one family member left out of this conversation could prevent removing life-support machines and allowing a natural death.

This book is a many-faceted gem, and I highly recommend it. For families who are considering hospice, this book will show them what to expect. The explanation of what each member of a hospice team does, including volunteers, physicians, chaplains, music therapists, and grief counselors, is invaluable.

Susan Dolan has an internet radio program called Reach MD aimed at medical professionals. She produced two fabulous 15-minute interviews with my brother Bill Manahan. M.D. about Living Consciously, Dying Gracefully: A Journey with Cancer and Beyond. You’ll be able to download these interviews from the http://www.nanbec.com/ media page soon.

Nancy

Mystic Massage

I was on the table yesterday under the hands of an extraordinary body worker. Nancy and I have gone to Maria Luisa Harmel of Isla Mujeres, Mexico, for years, and every massage is an adventure.

First Maria Luisa does away with the modesty sheet, so I am totally exposed. (She would use a sheet if I wanted one, but let me tell you, it is fabulous to do without!) Then she puts eucalyptus oil on her hands and holds them under my nose so I can breathe in the strong vapors of this medicinal plant. She rubs my scalp vigorously and then moves to the rest of my body.

For over an hour, Maria Luisa slathers on different oils for various areas of my body and rubs and kneads, vibrates and bends, stretches and pulls. As her hands fly from my shoulders to my ankles, I feel as if I were a piano and Maria Luisa the genius musician.

During her massages I almost always have a deep sense of my soul being just a resident in my body. My mind seems to zoom to the outer galaxies and I look back at this little speck of dust called Earth I feel so much love and joy for this home and for the physical form I am inhabiting for such a short time.

Not only do I walk (stagger) away from the massage totally relaxed, the knots rubbed out, the energy points revitalized, and my skin aglow, I also have a sense of profound spiritual wellbeing.

On that little rectangle of a table, my soul experiences a connection to the Infinite.

Becky

"A Deep, Deep Breath"

We recently received an email we'd like to share with you. Sarah has given us permission to quote excerpts. Her response reaffirms the hopes that Nancy & I have for the book.

A few days ago a dear friend of mine handed me a copy of Living Consciously, Dying Gracefully: A Journey with Cancer and Beyond and said, "This might be helpful to you right now." Now that I've finished your book, I have to say that her words are an understatement.

I can't begin to tell you what an absolute blessing it is. My mom was diagnosed with appendiceal cancer in March and has had surgery, chemo treatment and now after only 6 weeks in remission, the cancer has returned. Our family has always been open to holistic healing, alternative medicine, and spiritual health, and to hear how Diane chose to live with her cancer brings me such encouragement and peace. This is exactly what I want my mom to know -- that she can choose how she wants to continue.

I'm so filled with gratitude for this book that I can't even begin to verbalize all the ways that it impacts me. Reading it was like taking a deep, deep breath. For the first time I feel like this entire experience is going to be exactly how it is supposed to be. My fears are slowly fading and being replaced by feelings of peace. And for that I am utterly grateful to both of you, to Diane, and to your entire family for being willing to share this experience.

In gratitude,
Sarah Fisher

Thank you, Sarah. Your words are an inspiration to us to continue our work!

Becky

Threshold Choirs

A wonderful gift for the dying is quickly blooming around the country: it’s called the Threshold Choir—a small group of women who sing at the bedsides of people who are struggling: some with living, some with dying.

Founded in 2000 by Kate Munger in Marin County, CA, there are now choirs all over the world. The first national Threshold Choir Gathering near Healdsburg, CA in June drew 100 women from 40 choirs.

Becky & I were on our West Coast Book Tour at that time so I was able to attend. What a joy to harmonize beautiful, peaceful songs in a lovely chapel! Many of the songs are written by Threshold Choir members, so the choirs are outlets not only for singing, but for creative work.

Kate Munger spoke at a conference in Minneapolis last spring and now the Twin Cities has its own Threshold Choir. In fact, so many women have turned out that once we learn the basic repertoire, we’ll divide into 3 groups: St. Paul, Minneapolis, and western suburbs. Sometime in 2008, we’ll start accepting invitations to sing at bedsides of people at the threshold.

I’ll continue to share stories from the Threshold Choir, including the wonderful experience a friend’s mother had in her final days. I’m grateful to be part of a group whose mission is to bring comfort to the dying and their loved ones. For more information about Threshold Choirs, visit their web site.

Nancy

New Legislation Restricts After Death Care

Many thanks to Richard Chin of the St. Paul Pioneer Press for his wonderful article of Oct. 14, “Keeping them close, one last time." We received positive feedback for the information about our family washing and dressing Diane after she died and accompanying her body to the crematorium.

A follow-up article by Richard Chin the next day focused on changes in Minnesota state laws, effective in August 2007, that make some of the experiences recounted in the “Keeping close” article illegal. These laws concern the preparation, viewing, and transportation of a body. All of them restrict the participation of family and friends in after-death care.

One change, for example, limits home viewing to immediate family members. If Diane had died today, only her husband Bill, children, and siblings would be able to view her unless she had written the names of others who could participate. Bill and Diane’s grandchildren, daughters-in-law, sisters and brothers-in-law, nieces, nephews, and dear friends would all be excluded without this document.

According to the Pioneer Press article, the force behind this legislation is the mortuary industry. As Jessica Mitford described in shocking detail decades ago in The American Way of Death, death is big business, and mortuary professionals have lots of influence.

As more and more people are taking care of their dying family members at home, it is interesting to see the legislature erecting roadblocks to after-death care of loved ones. Those of us who view death as a natural family event and not a medical emergency and who believe that families should be able to chose the extent to which morticians are involved will need to challenge this new unnecessary and intrusive legislation.

Becky

The Holiness of the Everyday

Last weekend my sister Vicki, Nancy, and I attended the 26th Annual Women & Spirituality Conference in Mankato, MN. Diane and Bill Manahan attended this conference many times during the 30 years they lived in Mankato. This year’s keynote speaker was Marge Piercy, author of 17 novels and several books of poetry. She spoke of the importance of transforming the language of the sacred since traditional prayers and liturgies ignore the holiness of the everyday as well as the experience of women. Images of shepherds and sheep may not be meaningful to people who have never seen a shepherd or a sheep!

Acknowledging the sacred in one’s day is also part of living fully and consciously. For example, appreciating the warmth of the partner lying next to you bed, the geese flying in V formation as they prepare to fly south, the pre-washed salad greens in our refrigerator, Bill raking the leaves, the copies of Diane’s book handed to a postal clerk and winding up in California days later.

In the spirit of acknowledging the holiness of everyday life, I want to pay tribute to our new garbage disposal. It feels miraculous to push table scraps down the kitchen drain and have them ground up with the flick of a switch. Thank you, to Vicki, for getting us used to your disposal last month in California, and to Bill for revealing that not having a disposal was the only thing he didn’t like about living with Nancy and me!

Becky

Tom at the Center for Grief, Loss and Transition

Last week Nancy & I met with Tom Ellis, the executive director of the Center for Grief, Loss and Transition in St. Paul, MN. It’s a nonprofit organization that offers therapy and education for complicated grief, trauma, and life transition. Tom has recently published a book called This Thing Called Grief: New Understandings of Loss. (Insert link www.tomellisbooks.com). Besides being full of wisdom and anecdotes from Tom’s therapy practice, this book offers practical tools for dealing with life’s blows.

Sudden, unexpected death, such as that experienced by the Twin Cities recently in the collapse of the 35W bridge over the Mississippi, involves much different challenges than death from illness or old age, when people have time to prepare, complete life and relationship tasks, and say their goodbyes.

Tom and the staff of the Center for Grief, Loss and Transition are doing wonderful work in Minnesota. Visit their website at www.griefloss.org.

A Miraculous Shift

Nancy & I made a big decision last month. Our inventory of Living Consciously, Dying Gracefully: A Journey with Cancer and Beyond was getting low so we needed to print more books. But how many—2000? 3000? 4000?

As we edged into a five-figures price tag (we pay all book production costs), we gulped hard and put off the decision. Then Nancy talked with a friend who was part of her Living in Process training group. Carolyn said, “You know what I’d do? Print lots and give a bunch away. It’s the best way to spread the word.”

In a flash we knew that we should print 4000 and give books to agencies dealing with cancer, illness, living consciously, dying, and grieving. We (mostly I) had been so hung up on needing to break even on publishing the book that we (I) had forgotten the most important thing: Diane’s message of inspiration and hope. What better way to share Diane’s wisdom than to put the book into the hands of people who work with the ill and the dying!

We made the decision a week before we were to leave for California. With only one book event scheduled for our ten days there, the trip hardly seemed worth the effort. (One planned radio interview had fallen through.) Within 24 hours of deciding to donate books to agencies, three events sprang up.

My sister, Vicki, let us know that a class at the California Institute of Integral Studies was interested in a visit from us. We met with the teacher after we arrived, and that evening we spoke about Diane’s cancer journey to her Integrative Health Sciences class.

Next the program director of the Women’s Cancer Resource Center in Oakland invited us to visit the center. She also told us about the Charlotte Maxwell Complementary Clinic. We left a copy of Living Consciously, Dying Gracefully with each agency.

And, finally, we learned about the Bay Area Breast Cancer Navigation Conference, for people who help those diagnosed with cancer navigate the medical system. The coordinator of the conference invited us to set up a table, and we gave away 40 copies! (Actually, my sister, Vicki and I attended as Nancy was sick that day.)

Nancy & I marvel at how once we let go of our financial concerns, opportunities to share Diane’s journey opened up. The miracles continue!

Becky Bohan