Please enjoy this guest post by Judith Redwing Keyssar, palliative care expert and our guest on RN.FM Radio on November 26, 2012.
Many years ago, 41 to be exact, I was standing in the snow at my grandmother’s grave. She had died the year before. My grandmother was one of my major role models, having been a strong-minded independent woman, born in a small village in Russia in 1877–way before women’s liberation or equal rights. Her life spanned many wars, travels from country to country, family members exterminated in Nazi concentration camps, her husband’s suicide, her daughter’s death from cancer, and finally her journey to America.
Zipa died the day before my eighteenth birthday. She had been my teacher and role model, and somehow it did not feel like coincidence that her death collided with the anniversary of my birth. I felt more honored than sad, and in that moment I realized something profound about the relationship of life to death, and the miracle of each one. I understood that life is a circle, a spiral, not a linear continuum with a clear beginning and solid end. I felt a strong sense, deep in my heart and mind, that whatever we understand as “spirit” goes on. I knew then that this knowledge would shape my life.(From the prologue to my book, “Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying.”)
So, as I stood in the cemetery, in the cold crisp winter air, looking out at the local mountain peaks that formed the elongated shape of a person’s face, the lines from forehead to nose to chin creating a white silhouette against the blue sky, I felt compelled to lie down in the snow and make a “snow angel” on top of her grave. When I stood up, I began singing my own new words to an old Quaker hymm (I am also a songwriter)—
“Tis a gift to know the spirit, ’tis a gift to feel the heart,
tis a gift to know that where we end we start;
and when we understand that the truth and the light, are inside us to guide us,
we come round right.”
This was many years before I became a palliative care nurse, and yet the understanding of the nature of the “gift” of life and spiritual awareness is such a crucial part of my passion for the work I do. Most hospice and palliative care nurses have been asked the question: “how can you DO this work?” And the answer is usually something about the fact that being a witness to human suffering and human transformation, is indeed a gift to be cherished. When a person is “called” to do certain work in this life and heeds that call, the lessons learned are unparalleled. Why else are we here, other than to fulfill our fates as “spiritual beings having a human experience” as Teilhard du Chardin describes the plight of human incarnation.
There are days when the gifts of nursing seem mundane and we take them for granted. We don’t always go home anxious to recount the remarkable story that we participated in that day. Some days are routine and the paperwork feels cumbersome and the “bottom line” of the organization we work for seems to get in the way of the work we really yearn to be doing. But other days, the pain and suffering that seems like it should be so overwhelmingly sad, turns into an opportunity for appreciating the magic and mystery of life, that most professions do not offer.
A Dog and Two Bears
Allan Bear and his wife Alice were the loveliest of couples. They had grown children and grandchildren and in their current lives they were totally devoted to their dog, Max. I met them when Allan was diagnosed with esophageal cancer and he became a palliative care client of mine over a period of many months. He underwent chemotherapy and radiation and maintained one of those incredibly positive attitudes and fine sense of humor throughout his disease process. He would always greet people with a warm smile and a hug, even when he had little energy to spare.
As Allan’s disease progressed, despite treatment, most of the time he did not wish to discuss hospice or dying or death. I find this to be true for so many people who have “end-stage” prognoses. Our jobs, of course, are to show up and support people where they are, not where we wish they might be.
When it finally became clear that Western medical treatment was no longer going to serve Allan, he accepted enrollment in hospice. I would visit Allan and Alice occasionally in their beautiful home to give them support and answer any questions or address concerns about the progression of the illness. Each visit involved greeting Max, the big, old black lab with grey whiskers who was an integral part of the Bear family. So integral that for Max’s upcoming thirteenth birthday, they had decided to have a “Bark-Mitzvah.” (In Jewish tradition, at age 13, one celebrates the transition from child to adult with an elaborate ceremony of Bar/Bat Mitzvah.) It is not a typical tradition for dogs to go through this rite of passage, but then, the Bears were not exactly the most “traditional” of couples. Many friends, neighbors and other dogs had been invited to this celebration, and the Bears had been looking forward to this day for weeks. The party plans for the “Bark Mitzvah” had also provided a wonderful distraction from Alan’s suffering. It was scheduled for a Sunday afternoon.
So, on the Wednesday afternoon before the celebration was to occur, I visited Alan and Alice. Alan was weak, but still able to get around the house. He was still eating small amounts of food and his pain was quite well managed, thanks to a wonderful palliative care physician with whom he worked closely. I sat down in a chair next to Alan at the large wooden dining room table, with Alice on his other side and Max curled up under the table, head resting on Alan’s feet.
When I asked Alan how he was feeling at the moment, he said he was doing pretty well. I then asked, “So, are you ready for the Bark Mitzvah on Sunday?”
Without missing a beat or even looking at me, he immediately replied, “I won’t be here.” Both Alice and I were shocked at what we heard, and after taking a moment to compose myself, I said, “What do you mean? Of course you’ll be here. It’s only a few days away.”
“I won’t be here,” Alan repeated, a bit more forcefully this time.
Alice and I looked around him at each other, with quizzical looks, as if to say, “What is he talking about? Is he losing it?”
Alan then proceeded to express a depth of emotion that I had never witnessed with him. He reached down and patted Max on the head and said he was so sorry that he would not be here for his celebration. He then turned to Alice and with glassy eyes, spoke the loving words of someone who knows there may not be many more opportunities for words. He spoke of his love and gratitude for their lives together and appreciation for all she had done in these last difficult months. It was awkward to remain at the table, feeling like this should really be a private conversation, but it would have felt worse to get up and leave in the midst of his eloquent and heart-breaking words.
Finally, Alan had said all he needed to say, and it was clear that my work was over for the day. I hugged them all–the Bears and the dog–and bid farewell, making sure I said my “real goodbye” as I always remind my volunteers and staff to do when they are visiting someone with a terminal illness. It is a good practice for family and friends as well. Since we never do know when our “last goodbye” will be, why not make sure that we do not have regrets?
On Saturday morning, my cell phone rang. It was Alice, calling to let me know that Alan had died early that morning. We were not surprised. He had told us so clearly that he would not be here on Sunday. And yet, one wonders–how do people know these things?
There are a myriad of gifts in our profession and a level of joy and appreciation that is often difficult to articulate. However, when we do not allow ourselves to take the time to experience or appreciate these gifts, they can go unnoticed, which is a shame.
This is yet another reason why nurses must take “self-care” seriously. We need to stop and smell those roses. We need to remember to do the things that honor our hearts and souls.
Angeles Arrien is an amazing story-teller and anthropologist. In her book, “The Four-Fold Path,” she discusses the concept of “soul loss” and the way it is determined by a variety of indigenous peoples. “Soul loss” or being “dis-spirited” can easily happen in a culture such as ours, where even those of us in service/healing professions are constantly running around, juggling a multitude of balls in the air, coping with overflowing plates of wonderful but stressful situations. Angeles Arrien suggests we ask ourselves four questions:
“When did you stop singing?
When did you stop dancing?
When did you stop being enchanted by story?
When did you stop feeling comfortable with the sweet territory of silence?
I find these questions so useful and so illuminating. When I see that I have a spent a month without these four states of being, I notice a shift in myself. I am not as centered, as grounded, as present for my patients or my colleagues or my friends. On the other hand, if I spend a weekend singing or dancing or simply taking time for solitude, I am able to remember the simple ways of bringing healing and compassion to my work and my colleagues–breathing, listening, feeling my feet on the ground and my heart opening to the true nature of my work.
I am reminded here of a folk song that I learned many years ago:
“Keep breathing, it’s the most important part
Keep breathing, it’s the most important part
You dip, and then you glide
You dip dip, and then you glide
It’s all in the rhythm, it’s all in the rhythm, it’s all in the rhythm of the heart.”
In our work, we understand that without the breath, the heart does not function, and without the heart, the breath does not exist. The hip bone IS connected to the thigh bone. The heart IS connected to the Soul. The Soul IS connected to the Universe. And so it goes.
‘Tis a gift to know the spirit, ’tis a gift to feel the heart.
‘Tis a gift to do the work we do.
For more information about Redwing Keyssar, please see her website or the following blog and article links:
Beginnings Magazine; 2007;27(4):4-5 PMID: 18051970
IT FELT LOVE
Did the Rose
Ever open its heart
And give to the world
It felt the encouragement of light
Against its being
We all remain