Move a Muscle Change a Thought

What happens to our bodies and our brains when we are caregivers?

We know a lot about the brain and addiction and stress. We know that caregivers are at high risk of misusing drugs and alcohol abuse and eating problems. The attitudes of people around us are not always the helpful. “Well, she deserves a glass of wine” or “Sure he smokes some dope but really—all that stress—he has to relax.” Or, “Yes she’s gained a lot of weight but taking care of her partner is really hard.” 

But what are we missing? How can we manage that stress and even the trauma of

caregiving?

A few weeks ago I attended a workshop with Bessel van der Kolk—who is the Director of The Trauma Center in Boston and considered by many to be the world’s top expert on trauma. He talked a lot about what happens to soldiers and veterans, of course, and what happens to people that experience terrible sexual traumas or who are in horrific accidents. Those are the folks who come to him for help.

But he also talked about the relationship between trauma and stress and addiction. He talked about what happens to doctors and nurses and caregivers. We’ve known about that intuitively, of course. Most professionals recommend support groups where we are encouraged to process our stress with lots of talking and sharing. But van der Kolk explained that talking can only help to a degree; we need to change the body first or words won’t work. “Calm the body to calm the brain,” he says.

That helped me to understand why I can’t always talk myself out of my feelings, and why it’s frustrating when someone says, “You don’t need to feel that way” when we are mad or sad or scared. We can’t get at our thoughts with other thoughts—we need to go through the body.

What trauma experts like Bessel van der Kolk recommend are breathing exercises, yoga, walking, stretching, dancing (not any formal kind of dance but rather moving around to some music)—movement. Now it’s been documented: Changing the body can change the brain.

Greatest Hits from Love in the Time of Cancer: The Amy Winehouse House

In the first few weeks after John’s diagnosis we visited a local cancer support center to see what services might be available. The house was lovely and there are many activities, support groups, yoga, dance, and shared meals.

But about 30 minutes into the orientation I picked up the whiff of condescension that often accrues around cancer. Part of it is in the pastel and pretty decor but it’s also apparent in the tone of voice used by the staff. It’s kind of a cross between the voice you might use when talking to a very small child and the voice one uses talking to someone in the midst of a psychotic break.

The condescension is also revealed in the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by a long, deep gaze, which immediately feels like someone has drilled the staff on how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to stare you down and make sure you know you are seen. 

But the greatest tip off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. At the “club house” the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make cookies.” Cookies?

I told John on the way home, “I have never made cookies as a heath care option so why would I make cookies in an institutional kitchen with a group of strangers just because you have cancer?” (OK, to be fair, I was still absorbing the reality of his diagnosis and having some flashback to my own cancer days.)

But that invitation to make cookies was the turning point for me, it shifted me from scared to angry and I was then energized. It set me to thinking about the kind of cancer support

place I’d like to create.  So here is an introduction to my new cancer support organization: The Amy Winehouse House:

The mission of The Amy Winehouse House is: Fuck Cancer, and it goes like this:

At The Amy Winehouse House we believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At The Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were a jackass before you got cancer now you are a jackass with cancer.

We will not ask you to share, process, make crafts or cookies or drink smoothies. We offer no bookmarks or anything that has, or requires, a crocheted cover. 

All activities at the Amy Winehouse House are optional and include:

Making martinis

Strip poker night

Learning how to hot wire a car

Our book group is currently a collection of Chuck Palahniuk

Yes, we have a smoking room --(If you have cancer and are going to die we want you to enjoy a cigarette on us.) On Saturday nights we have strippers. Yeah, for girls too.

And we certainly do have drug education.  We think of this as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score some medical marijuana.

Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.) 

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hated Lance Armstrong all along, (We call him “One Ball” around the House.) And yes, we have bracelets too, but ours say, “Fuck Cancer.”

More on Marriage

I’m still thinking about marriage, and loving what I learn from reading. Sometimes the best learning comes from reading about relationships that don’t work, until they do.

I loved Elizabeth Gilbert’s book, “Eat. Pray. Love” I read it and I listened to it: God and pleasure and faith and fear and how she learned to overcome fear.

Yes, OK, it did help that she had a big house to sell and a huge book advance. But none of that discounts her humor and good grace of her book. I especially loved when she asked –by name-- everyone in the universe co-sign her prayer to have her divorce end peaceably. And I also loved that water tower scene in India, finally, finally turning that ex over to God—

But her book that followed “Eat, Pray, Love” is Gilbert’s second memoir, and the rest of the story,  “Committed” about marriage and how she reluctantly married the man she fell in love with at the end of “Eat, Pray, Love.” One of my favorite lines from Committed is this:

“There is good reason to end such stories with weddings, and buoyant celebrations of love. Because what follows a wedding is a marriage. And marriage is an institution, not a party.”

A great line. Quite borrowable for toasts, I think.

What Gilbert also says is, “Marriage is hard when you invest all of your expectations for happiness in one other person. A man can be part of a good life, but not the life.”

Now that’s a tattoo or a poster or a mantra for young women and all women.

So how do you get that great marriage from the reality of “Marriage is hard”? By investing in all parts of your life and in many relationships. You have to make (intentionally create) your own good and full life, and then a man/partner can be a great accessory.

Indeed.

*****

I write lots about relationships and marriage in my book, “Out of the Woods”—available at bookstores and, of course, on Amazon.http://www.amazon.com/Out-Woods-Womans-Long-Term-Recovery/dp/1937612473

Marriage Reveals Us

A lesson from fiction this week.

I just re-read the great novel “Olive Kitteridge” by Elizabeth Strout. It’s a story about the human heart and hope and love and pain. It’s a book that opens one’s veins I think.

In an interview with the author, Strout says, “A marriage is always a source of great drama for a fiction writer. It is in our most intimate relationships that we are truly revealed; that is why I write about married relationships.”

“We are revealed”, she says. And I am nodding. That is why I like being married. When John and I were first together, and his cancer was newly diagnosed, friends said to me, “You don’t have to marry him.” Some others said, “He has cancer; you don’t have to take that on.” What they meant was, “You don’t have to be a martyr.” But what they didn’t understand is that I am not a martyr –not a bit. Actually I’m quite selfish, and that’s partly why I like marriage. 

Stout nails it: “We are revealed,” she says. Being married is actually selfish, and being a cancer caregiver may even have a hint of selfish in it. They are both very powerful and intense ways of seeing oneself.

Yes, you could take the long, expensive route by going to psychoanalysis or try a cheap, fast route of a self-help weekend to learn about yourself, but marriage works.

Even when it doesn’t.