More about Eve Ensler--In the Body of the World

This post could also be called, "What we don't talk about when we talk about cancer". Eve Enslers's new book, "In the Body of the World" talks about many hard, uncomfortable, embarrassing, brutal things that are part of cancer.

I wrote about her book, "in the Body of the World"  a few days ago and I highly recommend it to you. In addition to being beautifully written, scrupulously honest and just so amazing in its structure, Ensler's book not only does not pull any punches, it pounds the reader with the physical reality of cancer and treatment. In telling her story she gives us the brutal reality of surgery and chemo and infection and secondary treatments and side effects and pain.

That last bit may seem surprising. In Cancer Land there is a lot of physical pain, but somehow it's not spoken of very directly. But Eve Ensler writes about screaming, and screaming and crying, and sobbing and being exhausted by the physical pain.

She also writes about blood, pus and poop. And she writes about good and bad nurses and bad and good doctors and how hard self-advocacy is when you are weakened by surgery, infection and all that pain.

I started writing this blog years ago because there was so little frank conversation about sex and relationships in Cancer Land and now I'm admiring Eve Ensler for her frank disclosure of the dark, painful, and literally shitty side of cancer too.

What Michael Douglas Said

So yes, last week you may have giggled or maybe blushed or maybe you fumed that oral sex was linked to cancer. Maybe like some you tired of the Facebook bashing that Douglas was just bragging as he linked his experience of oral cancer to his experience with performing oral sex. (Some of the comments were quite funny.)

But as the attached article reminds us there was a public service buried in that bragging or blaming. There is a connection to HPV and oral sex and cancer. So here is the serious side of the story and--Thank you New York Times Science section--here are the facts.

http://well.blogs.nytimes.com/2013/06/10/oral-cancer-sneaks-up/?smid=pl-share

In the Body of the World by Eve Ensler

“I could not put it down.” I have heard people say that about a book and I have read reviews that said that about a book and I always thought that sentence meant, “This is a really good book.”

I have read many really good books so I thought, “Well, I’ve had that experience too.” Until this morning. This morning, because the Sunday paper was late and I wanted to sit on my couch with coffee –my favorite thing early on a Sunday—I picked a book from the pile of new books waiting for me.

My thinking went something like: “Eve Ensler, vagina chick, great play, oh here’s more about vaginas, but she’s an important public intellectual, better take a look, probably can skim this, get the drift, then be done.”

I read the jacket cover and inside blurbs. And was thinking: “Oh, she had cancer, that’s too bad, wonder when I’ll get cancer again, look how she uses her life experience to make art, even cancer, good for her.”

Then I started to read. Introduction was intriguing, “She’s going to make women’s bodies, child abuse, war, the Congo, activism and the environment a whole. How in the hell can she pull that off?”

Then chapter one.

It’s been almost an hour and a half, and I kept saying, “One more, I’ll just read one more chapter.”

I could not put it down.

Except for this part of me that feels so compelled to tell you what I am seeing and thinking and feeling and wondering about. So I got off the couch to come here to say to you:

Eve Ensler’s new book is called “In the Body of the World” and it’s about a woman’s body and women’s bodies and rape and nature and a child’s sexual abuse and a grown woman’s addiction, and friendship and medicine and the Mayo clinic and the scariest kinds of surgeries, and it’s about the Congo and hope where, really, there shouldn’t even be hope and it’s also about language and transforming personal experience and shit—literally shit—into art.

And I could not put it down.

The Spiritual Side of Cancer

I read a helpful  article today in the Times Union--Voices of Faith section about spirituality and illness. And of course there has to be a spiritual side of cancer. It doesn't mean religious or churchy or even prayer--tho prayer in it's broadest manifestation--using Centering and manifestations has to help.

It made me think a lot about what spiritual practices are valuable especially for people who are Agnostic or Atheist. It includes being quiet, meditation, being in nature, going to the ocean, prayer as stating intentions and writing.

Here's the link to the article by Michael S. Barry from today's Times Union:

http://www.timesunion.com/local/article/Spiritual-side-of-illness-4587465.php

More on the Dance of Cancer

What if we replaced the metaphor of a war on cancer with the more energizing and empowered image of a dance with cancer? In addition to releasing all the war and killing and aggressive language we could invite a sensibility of partnership, grace, joy and even humor into our experiences with cancer—whether we are the patient or the caregiver.

I know that one of the reasons we use battle language is that we see cancer as an aggressive enemy but we often forget that in that militaristic dynamic we are also describing our own body as the enemy. After all, cancer does not come from outside of us. These are our cells dividing and our immune system responding.

But what if we saw cancer treatment as a corrective to our good body? As a way to make deep and life altering changes to our deepest being? And it is that of course. And as caregivers we too are deeply changed by the experience of cancer in our family and in our relationship. And caregivers—you know this—are changed forever. Just as the patient is never the same again, so too a cancer caregiver can’t go back.

I’ve been thinking about the dance of cancer this week and wondering about what kind of dance it is. What I realized is that a very long course of cancer and caregiving requires many kinds of dances. Sometimes it’s a tango—strong and sensual. Sometimes a waltz when you are counting out a rhythm and moving together, and sometimes it is the Flamenco with a lot of stomping! And of course as in any full ballet there are the times when it can only be a solo experience, and then others when the caregiver and patient face each other in full traditional Adagio—forceful and aggressive and insistent.

This quote from Friedrich Nietzsche hangs over the altar in my bedroom:

“And we should consider every day lost on which we have not danced at least once.”

Cancer too, gives us opportunities to dance.

Couples Dancing with Cancer Together

Love in the Time of Cancer is all about how couples cope with cancer. We talk about how to keep love, intimacy and sex alive while your partner goes through a cancer diagnosis and treatments. So the article in yesterday's New York Times is a wonderful addition to our conversation.

The only downside is the insistence on the war metaphor...maybe we could start a change here. How about "Dancing Cancer Together" instead of battling? Wouldn't the metaphor of dancing do more to help couples with cancer? And yes, even dancers trip and fall and get out of step but there are also moments of flow and beauty and dancers seek a mutual rhythm.

Let's think more about this idea of "Dancing with Cancer". But for today here is the very helpful piece from the Well at The New York Times.

http://well.blogs.nytimes.com/2013/05/27/facing-cancer-together/?smid=pl-share

Memorial Day

On Memorial Day, we see parades and flag ceremonies at monuments and maybe some politician will offer remarks from a VA Hospital, but there are other sites we should notice and honor this Memorial Day. They are the psychiatric hospitals, treatment centers and soup kitchens. These too are places where American veterans live with the injuries of war. There is a long history of the kinds of injuries seen in those less holy places, as there is a long history of military mental illness.

           

On April 6^th 1917 the US Congress declared war and we entered WWI. It was our first full-scale entry into armed conflict on European soil. War has changed since then and we have changed but there is one constant, which is the sad fact of psychological injuries sustained by soldiers in war. 

Various authorities—military and psychiatric—put the estimate of “stress casualties” between 25 and 60 percent, though the words we use to describe them has changed over time. Terms have included: Battle fatigue, war neurosis, shell shock, military hysteria, trench suicide and  “LMF” or “lacking moral fiber”. These labels reflect the cultural attitudes of each time period, but they are also influenced by military strategy and even demographics.

In 1917 the US population was at an all-time high. In supply terms this meant there were plenty of soldiers. In that war, where supply met demand, it was not uncommon to find that those who broke down, who froze on the field, who hesitated to shoot, retreated or exhibited any other detrimental behavior were considered to have problems of character rather than injuries.

By contrast in World War II, with fighting in both Europe and Asia putting more than 16 million Americans in uniform, the condition of a struggling soldier was framed very differently. War trauma became an illness which could be treated or cured.

But beyond the words we use, it’s important to note that there has always been a civilian hand-me-down from the military and the psychiatric casualties of war. The need to keep soldiers on the battlefield or to return them to combat in World War II saw one of the United State’s largest investments in psychology and psychiatry. Through the 1940’s the Pentagon spent millions of dollars for psychological research. That has had a lasting impact on all of our lives.

The research for that war’s soldiers spilled over and into the fields of advertising, education and even design. 1946 saw the first National Mental Health Act; in 1948 The Snake Pit –a movie about shock treatment and psychoanalysis won 7 Academy Awards, and also that year Psychology Today magazine was launched for the general public. In 1949, the Nobel Prize for medicine went to Dr. Egas Moniz, who “invented” the pre-frontal lobotomy. Today our casual talk of “issues” and “processing feelings” has its roots in the Pentagon’s need.

  More than any other war Viet Nam redefined our beliefs about mental health.  Five years after the fall of Saigon, “Viet Nam Syndrome” was identified, which morphed into Post-Traumatic Stress Disorder, which rapidly generalized to civilians who suffered trauma.

Now, we are trying to end another war. Our soldiers face guerilla combat  plus suicide bombers and armed civilians. These increase the psychological difficulties, and we are now seeing another reframing of the resulting psychiatric casualties.

For now, we must remember to factor in these injuries when we talk about the cost of war. We must  ask how we will label our broken soldiers, how we will care for them—and their families-- and what will be changed, now and later.