Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.
– William Shakespeare, English poet and playwright, from Macbeth
This past Thursday, my friend Jane and I attended another Berkeley Arts & Letters event at the Hillside Club (2286 Cedar Street, Berkeley, 510.848.3227). Knocking On Heaven’s Door: The Path to a Better Way of Death, is a memoir by narrative journalist Katy Butler chronicling the deaths of her father and mother – one who died too late and the other who died too soon, respectively, according to Butler. An article she wrote in 2010, which was published in the New York Times Magazine, “What Broke My Father’s Heart,” became the opening of her exquisitely written book. The Wall Street Journal ran an excerpt about her mother in its pages on September 6th.
A Braided narrative structure
Having lost my father on Christmas night 1995 and my mother on January 3rd, 2012, I was interested in hearing Butler talk about losing her parents in very different ways. Being involved in the healthcare industry, I was equally interested in her discussion of how the medical world views the elderly and end-of-life issues. What I didn’t expect, and which was a pleasant, serendipitous surprise – because I’m neck-deep in the final revision of my novel – was learning about narrative structure.
Deirdre English, who teaches at the UC Berkeley Graduate School of Journalism and is a former editor-in-chief of Mother Jones, was the guest interviewer who happened to be an undergraduate college roommate of Butler’s for a brief time when they were at Wesleyan University in Middletown, CT. Knowing the premise, English brought up being intrigued by how Butler would approach the narrative structure. Butler admitted that she didn’t want to write a depressing story of her parents’ deaths, which she described as a downward staircase narrative. That story, she explained, “was only part of the truth.” The other narratives, which she braided in and which created upward staircase narratives, included her transformative relationship with her mother and her growth as a human being. She referenced Greek mythology and the seven basic plots, of which overcoming the monster constituted one of her braided narratives.
Setting the caregivers free
Despite the help of a home caregiver, Butler’s mother was the primary caregiver for her father, who had suffered a stroke at age 79 and declined in the next 10 years, the last five and a half years of which were artificially prolonged by a pacemaker. If you read the NYT Magazine piece, you’ll bear witness to the agony Butler and her mother endured during those difficult years and when it came time to make difficult decisions that would essentially set them all free. Butler talked about the opportunity in this spiritual ordeal of taking care of a parent’s death. Ten years of caregiving can break people, but Butler says it is also an opportunity to grow. When the body can no longer be healed, the spirit can be healed.
Her mother kept a journal at the advice of a hospice worker, and while it would be painful to read soon after her passing (during my mother’s six weeks in the ICU and the acute-care facility, I kept copies of my detailed e-mails to my husband and close friends; I have yet to read them because I know I will be thrust back into those very sad, very terrifying moments in time and I’m still not ready to go there), her words served as a release for her mother and are also an invaluable historical and emotional record for Butler.
In her memoir, Butler discusses the faults in the medical profession regarding end-of-life issues and in our world view of the elderly – how we need to move away from saving lives at all costs to alleviating suffering. In addition to this paradigm shift, patients and caregivers also need to educate themselves about what they want and what their options and rights are. For example, a year after her father’s stroke, the implantation of his pacemaker as a prerequisite to surgery for his hernia created more health risks and issues and also prolonged his life when “he was already suffering and not happy,” Butler said. The 10-year lifespan of the pacemaker battery meant that no matter what was happening to the rest of his organs, no matter the deterioration, his heart would keep ticking, his pacemaker would keep him alive. Butler believes we need to know all the pros and cons, and just as important, the alternatives to any medical intervention, especially in our older years.
Q&A: Stories of heartbreak and wonder
In the Q&A session, several people in the audience spoke up about their caregiving experiences as sons or daughters. There were a couple of women who work in the hospice industry, and they also go through these difficult journeys with many people’s mothers and fathers. One story that was particularly poignant was a woman who worked in hospice and represents Compassion & Choices, a nonprofit organization in the U.S. that advocates for patients’ rights and end-of-life choices. She worked for years with adults and spent the last five years working with dying children, who she says were “fantastic teachers.” These children asked a very important question to the hospice workers – and not their parents because they knew it was too difficult a question and too close for their parents – and that question was: “Does it hurt to die?” The woman explained that these children are in so much pain that they want to know if death can release them from their pain. It was also a way for them to learn through the answer that “dying was okay.”
While the topic was really heavy, I came away from the reading enlightened and determined to get to the book and learn from it. Her writing has been described as exquisite, and it truly is. She is a master narrative journalist. I look forward to seeing how she braids the various narratives within the book. I also look forward to gathering wisdom and understanding and healing from her two very different experiences of loss and growth.