31 - what else can we do?

Tracey started throwing lighted matches into an anthill. We all enjoyed this childish diversion. Then Tracey saw something the rest of us did not, something that paralyzed her and remained forever engraved in her memory: Faced with dangerous fire, the ants split up into pairs and two by two, side by side, pressed closed together, they waited for death.

—MKB via David Shields via Eduardo Galeano, Enough About You: Notes Toward the New Autobiography

~~~

Death’s all round. And stories of strength, courage and survival. And romance. And love.

I have spent an inordinate amount of time online following the natural catastrophe that has unfolded in Japan. I have watched chilling videos of the inundating and destructive tsunami waves. One in particular got to me (available on Facebook only), a simple street, could be any street in any city across the globe; and the first trickle of water can be seen, coming toward the camera, and slowly, over seven minutes, that trickle turned into a torrent, a sustained wave 10-15 feet high, cars, yachts, everything including the kitchen sink comes streaming past. The cameraman begins to move to higher ground. You can sense the growing fear, the realization that this is nature at it’s raging best, most dangerous. And the camera pans left and right, we see homes and buildings collapsing, unmoored from their foundations, you can hear it, the steel creaking and cracking, so eerie, and in the distance, on a kind of island of rubble, a gathering of citizens huddled together, at the mercy of what may come, hoping, praying, unknowing.

Thousands and upon thousands of our fellow human beings dying, being washed out to sea, and of course the nuclear disaster, six reactors at the Fukushima plant, radiation releases, meltdowns still possible, the environment now contaminated, and folks like Dr. Helen Caldicott stepping up, and the rest of us, we simply have to go on with our lives, right? What else can we do? That’s the question, isn’t it? What else can we do? When folks we do not know, folks different from us, speaking different languages and praying to different gods undergo such duress, such pain and suffering, how should we respond? What connects us? What else can we do? Some links:

- Network for Good: Japan Quake & Tsunami Relief

- SHARE: Skeptics & Humanists Aid and Relief Effort

- Songs for Japan via iTunes (All proceeds go to the Japanese Red Cross)

~~~

A while back I was sitting in one of my favorite cafés, the Pannikin in Del Mar, on the couch, in the south cubbyhole, and I’m reading, writing, online and I’m wearing one of my old hoodies, grey with green lettering, “Sac State”… and this unshaven, disheveled gentleman sits down next, looks over and asks, “Are you from the Capitol City?”

“Born and raised.”

And we engage, a significant and meaningful coincidence. He and his wife own a home in downtown Sacramento, and come to find out he’s affiliated with UC Davis School of Medicine and currently on a fellowship with the Institute for Palliative Medicine, a unit and essential element of the programs and services provided by San Diego Hospice. The conversation comes round to death. [Are you surprised? I am obsessed, you know this. It’s always right there. Going on four years since diagnosis, advanced metastatic! Chemo/clinical trial saved me, and from the moment I got the news that the Big C had arrived, death’s been my companion. Yes indeed, a charming and romantic love interest, we stroll together arm and arm, she’s an inducement to fix my attention, to inspire a courage and fearlessness that was lacking in my life.

Letting it all hang out I am, and this psychiatrist, ever so forthcoming and friendly jumps right in and he shares what he’s confronted with in his work. Needing to understand and provide insight and comfort to those meeting up with death, maybe for the first time. The “death experience” in life, a proper exit to what needs to change, to be transformed. I share with him what’s going on with me. So many “deaths” in the last few years and a resurrection or two, and of course, love—Camille.

In an email back and forth with this sweet gentleman I provide a link to these pages, and mention my favorite writer on the subject of the psyche, James Hillman. And he comes back, mentioning he’s got Hillman on his nightstand, and he’s reading Suicide and the Soul. And JESUS H~!, what a boon. I get myself to UCSD’s Geisel Library. Checked out a copy and took my time in reading it. It's a 179-page book and I took 60 pages worth of hand written notes. Here’s one of the gems, on the heels of an articulation that individuality requires courage. When we're facing off with death, "The real choice is choosing oneself, one's individual truth... To continue life, knowing what a horror one is, takes indeed courage."

Death... The idea of letting go, of giving up or “dying to the past.” The desire to change, to reconfigure, to lean in fearlessly and confront what’s most difficult and most unsavory. It can be a time to hunker down or a time to walk away and begin again.

~~~

And I got to thinking about an earlier, and significant back and forth I had with Camille. I mentioned I had read a splendid article, Letting Go: What should medicine do when it can’t save your life? by Doctor Atul Gawande. He so nails it. Blew me away, and she got all excited and indicated that her Journal Club (A group of engaged and superlative Cancer Center nurses who meet to stimulate discussion and help each other think about ways to enhance and improve the care they provide.) is reading Gawande’s New Yorker piece for their next meeting. She asks me to send her three questions based on my reading. Said it would be cool if they had input from a patient.

Well of course I went off, told her it's always important to ask such questions, said I was intrigued by her and her comrades, nurses who move into oncology and are undaunted by the suffering they see/manage every day. "My god, the strength of spirit it takes to be alive to what your patients are often losing…. I know it's a job, it's your training, but we are whole creatures, and you all touch so many lives day-to-day. You may not know how significant and powerful just one moment of care and thoughtful concern goes, how much it means to those you tend to; they are immeasurable."

I got into it. Sent these three along. Quote from Gawande first.

# 1 - "Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an "ars moriendi" for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment."

I was diagnosed right off with stage four, advanced metastatic prostate cancer. When the initial androgen blockade and radiation failed over time, when it was clear the metastases had only been slowed and the C-cells had found their way to the bone, I got the message. Time is short. After beginning chemotherapy I asked my primary care physician about hospice. She was struck and affected by the question. She tried to assure me that we weren't there yet (She had no way of knowing that the chemo would work, that death would be delayed.). She gave me the information I needed (she attends at San Diego Hospice) and I was comforted by the idea that I had some control, that as I had created my own "art of living" along the way, I was now aware that the "art of dying" was included in that process.

My question: Should the physicians and nurses who are there in the first moments (when the patient is told they've got an advanced stage illness) paint the whole picture in those early and pivotal conversations? "Here's the data we have on longevity, here's what we don't know, and here are all of your options. This is what we propose...." So rather than just offering up "the unstoppable momentum of medical treatment" option (a going along with our collective fear of death), do you think it would be more honest, more empathetic and more empowering to lay it all out, the truth, what you know and what you don’t, including the powerful and compassionate offerings of hospice?

~~~

# 2 - "... ultimately, death comes, and no one is good at knowing when to stop.... The hard question we face then, is not how we can afford this system's expense. It is how we can build a health-care system that will actually help dying patients achieve what's most important to them at the end of their lives."

My question: Should all those who deliver services in the clinical situation involving terminal illness be required to take courses in philosophy and/or comparative religion as part of their medical training, which is to ask, should those working with patients in the most unsettling moment of their lives be expected not only to deliver the drugs, the surgery or other treatments as specialists, but also to bring to this moment a social, psychological, anthropological perspective and understanding?... this may already be happening.

~~~

# 3 - "... people usually experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning—and you either got through it or you didn't... death is certain, but the timing isn't. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost."

My question: Do you think the violent war metaphors are the right vehicles for understanding such a delicate situation? More of the same in human civilization, where we're always competing with, fighting, battling, endeavoring to murder and kill. Given the clinical situation, the struggle to preserve life, is there another way to understand and frame it, another way to refer to our knowledge and experience of organic life? Would it be appropriate to see, hear and feel all of this in the terms of ecology, to confront and reflect upon our physiology, our biological and chemical individuality, in a more circumspect, holistic and non-violent way?

~~~

She said it was one of the most widely attended and inspired Journal Club meetings they’d ever had. Gawande’s insightful and stirring article got to them; and it got to me.

I so love this woman. I’ve told her over and over these past weeks.

And the question is: Have you told your significant other, your husband, your wife, your son or daughter, your mom or dad, your genial uncle or aunt, best friend, your former spouse or partner, whoever it is? Tell them. Don’t let these moments slip by. Death is ever-present, you never know. I keep seeing that group of Japanese citizens huddled together, on the rubble, the swirling torrent encircling them, and they’re holding on to each other, not knowing, and I thought of those they loved, and those that love them, and I…

Comments

[Rosemary]

Max - this took me back to the path we walked Mom's last 2 months. Fortunately, we had the support of a marvelous hospice team who allowed her to go gently into her long night. However, my experience while she was in the hospital the two weeks before she went to the nursing home was the all out war you mention.....even though they could not name the enemy. I learned quickly that questions from the family were not welcomed until I said "don't misconstrue our questions to be combative.....we are a family trying to make the best decisions for our mother." The move took another two days, but we were at last able to get her into the comfort care that eased all of our ways in the final days. How I wish that the medical staff at the hospital would have given us the information on options and what to expect early on.
The day before Mom died, my children and my siblings and I spent the entire day with her. She was non-communicative, but I am convinced aware of our presence and the fact that she was at the end of her life. I would not take anything for that sacred time to say goodbye and celebrate her life together. My children were able to experience the peace found in a very sad life experience - they now have a greater understanding of what a gift this can be and are more prepared to face my journey when that times comes.

Continue on, dear friend....you are defining your way.

[Maxwell Kinney]

Thank you for this. Our health care providers, our physicians, our nurses, all, need to know we don't expect them to be infallible and perfect, that we not only desire the truth but expect it, that in the end our trust and confidence come from looking across at another human being who has enough sense and compassion to admit to what they do not know.