Vagina

Words—it’s all about words. Language is what creates our reality, and language is what allows us to think. Think about that. If you have language, you have power and in CancerLand we need all the power we can get.


Words really do matter. That’s what got me started on this journey of writing about sex and intimacy and cancer. I had to write out my frustration because of all the words no one would use with me and John, and because of the words they did use that made me crazy.

But it’s not just in CancerLand. Our culture is inhibited about sexual language and even anatomical language. Now, I know that most women over 30 think they have that nailed. We do not talk like our mothers or our grandmothers. We have come to a place where we believe that we are so open and forthright; we don’t say “down there” or “pee pee” to refer to our genitals but we have raised a huge group of young girls who think their whole genital area is a vagina.

No! That is not your vagina or your Vajayjay—sorry Oprah. Most of the time we are mislabeling the mons, vulva, labia and clitoris, with the equally euphemistic vagina.

And that is a problem in CancerLand and in women’s lives. To think we need words and to have intimacy we have to have words. So what are we gonna do about our words?

Sleeping with Bread

A favorite book of mine is called, “Sleeping with Bread” by Dennis, Sheila and Matt Linn. It’s about a simple discernment process that the Linns teach—helping us to see what matters and what brings us joy.

My favorite part of this book is the story that gives the book its title. This is the story:

“During the bombing raids of World War II thousands of children were orphaned and left to starve. The fortunate ones were rescued and placed in refugee camps where they received food and good care. But many of these children who had lost so much could not sleep at night. They feared waking up to find themselves once again homeless and without food. Nothing seemed to reassure them. Finally, someone hit upon the idea of giving each child a piece of bread to hold at bedtime. Holding their bread, these children could finally sleep in peace. All through the night the bread reminded them, “Today I ate and I will eat again tomorrow.”

I love everything about that story –the problem and the simple solution. I can relate to the persistence of old feelings and fears—and how any kind of deprivation can cast a long shadow.

Each time I read it I ask myself: What am I trying to hold on to now to meet a need that was in the long ago past? Are all my shoes a kind of “bread”? Old relationships? Old ways of relating to others? And what new bread might I ask for and hold instead? Bread is a spiritual metaphor in every faith—so what “bread” can I hold onto instead of shoes, scarves, resentments, fears, jealousies and my own cozy ego?

My Happiness is My Business

I’ve been grumbling today. My to-do list is too long. I’m achy and tired. I’m mad at John. I’m mad at John because his list is not as long as mine. And he doesn’t sweat the small stuff in the ways that I do. But in my head I’m making my case: “It’s all up to me; look at all I do; I’ll never get it all done; how can I feel sexy or happy when I have all this to do?” Etc.

Then this thought came to me: My happiness is not his business. Many of the things on my list are there because I care about details. I coordinate and I make things match and I’m a nut about following up with friends; I have a long list of self-care tasks that I do because I want to and I have two jobs and I love to read, dance, play golf, exercise and take classes. Yeah, the list is too long, but it’s mostly my list.

I can’t tell you how grateful I am for this fresh thought. My happiness is my business. When I try to make my unhappiness his business then I’m making me a victim. Wow.

Whatever..

I’m thinking about how things get reduced to a symbol, shorthand ways that we communicate, and the funny ways that people think/talk about cancer.

The other day I heard a friend talking to another friend about one of her friends who has cancer and she said, “Yeah and she has cancer…you know, the bandana and whatever.”

Cancer, the bandana and whatever.

The trouble is, I knew exactly what she meant.

It's Always There

I leave today for a week in Orlando for a Caregivers conference. Longest we have been apart since John’s surgery. I notice that my mind calculates time this way.

Yesterday in the car on our way to a concert we were listening to the Yankees game and there was a public service announcement for Colon Cancer screening. We both listened and didn’t speak. It’s always there.

We talk about the future. We talk about “when we are old” but cancer and its nasty statistics are always there. And I calculate. I plan for a wedding and a funeral. I dream of white and black. My contingency plan is always in place. Cancer is the hum in the background. It’s always there.

Throw Them Over the Edge

Managing my own thinking—and not scaring myself to pieces –is one of my ongoing challenges as a caregiver and partner. Here is my new strategy to deal with scary thoughts.

Every morning I walk at the YMCA. The track is elevated and overlooks the large gym floor below. That’s a help often because I get to watch the Pilates class or the killer Boot Camp group grunting and puffing thru a workout that would kill most Marines. Watching them makes me very happy to be walking or jogging.

Today as the fear thoughts started in on me I had a new thought, “Throw them over”. So each time my head cooked up a new “What if…” scenario I’d say “Nope, over you go.” and toss that thought and picture over the railing and onto the gym floor below. It also helped to imagine these scary thoughts as scared, bratty little kids so when they land on the gym floor they can run around and wear them selves out—away from me!

Taking a Risk

The past week has been good. Travels and reading and art. And fear. Fears rise up again and push me and pull me. It is cancer and death and money and other women and the story in my imagination always has the same ending: I am alone. Years of therapy have taught me that I come by this fear honestly. There were huge and horrible abandonments in my early life. But while I can chronicle them they have left scars and bad emotional habits. One is scaring myself to death on a regular basis.

But this week something new. Risk taking by going toward John and not away from him. Risk taking by going toward intimacy rather than girding myself from it. Risk taking by letting him in—bit by bit—on the fears and fantasies that make being me a daily challenge.

I have a new idea. This vulnerability-and it is that—is not a concession of weakness or something I give over to him, but a strength in me and an acceptance of the woman I am who has survived so much and who still wants to give and receive love.

Thinking about Death

I kill John over and over. Even before he had cancer, and especially now that he does, I imagine his death. I am imagining him being taken away from me. I am imagining losing him. To be fair, I have always done this—imagined that people I love will die. It’s not without grounds; all of my family has died and I watched each one go, some fast, some slow. Now, having this long fought for love, there is a special cruelty in his cancer. There are real grounds for my fear. But I also know that I can lose what is here and what is now by constantly living in his dying.

On our vacation to Florida I read the book, “Beginner’s Greek” by James Collins and in it I discovered this line that I cherish as a new mantra:

“For the sake of goodness and love, man shall grant death no dominion over his thoughts.”

It is from “The Magic Mountain”, by Thomas Mann.

Facing Fear

It’s Monday. Like many Mondays this one comes with fear. Not overwhelming for which I am grateful, but fear none the less. Monday fear is: the weekend is over and I am thrust back into the world. I fear the work week unrolling before me. Can I do it? Will I be found out? All my ideas of myself are tested. Do I do enough? Do I try to do too much?
On Mondays I am also thrust into a different view of this relationship. Friday to Sunday we are together or making plans or talking as “we”. But on Monday he is him and I am me. I wonder if the we is real. Have I succumbed to fantasy? Am I expecting too much? Or not enough? On Mondays I wonder if there will be a Monday in the future when I will wake up alone and start my week. Will I be sad? Or happier?

I decided this morning that I will not think about him today. It’s just too hard on Mondays. At the gym I began to catch each “him” thought and toss it away like a ball. Whoops, I caught one but then Whoosh, I toss it away like a kid playing hot potato.

At the office I am preparing for my class and I read an essay by Erica Jong about writing. A Monday gift buried there. She writes this:

“All the good things that have happened to me in the last several years have come, without exception, from a willingness to change, to risk the unknown, to do the very things I feared the most. Every poem and every page of fiction I have written has been written with anxiety, occasionally panic, always uncertainty about its reception. Every life decision I have made—from changing jobs, to changing partners, to changing homes—has been taken with trepidation. I have not ceased being fearful, but I have ceased to let fear control me. I have accepted fear as part of my life, specifically the fear of change, the fear of the unknown and I have gone ahead despite the pounding in the heart that says: turn back, you’ll die if you venture too far.”

What Have You Changed Your Mind About?

I just finished reading this book of really short essays by scientists and social scientists. The title of the book is the question that was posed to this posse of thinkers by Edge.com

The group riffs on linguistics, chaos theory, artificial intelligence and the size of the universe. All of that was pretty interesting but it’s this question:

“What have you changed your mind about?”

and its corollary:

“Who are you willing to change your mind about?” that have me thinking hard.

It’s about humility and imperfection and staying intellectually, emotionally and spiritually humble.

Am I willing to change my mind about this relationship? About my role? About my behavior? About his and hers and theirs? Am I willing to change my mind about “the right thing to do”? Am I willing to change my mind about who gets hurt? Who got hurt? Am I willing to change my mind about God’s will? About cancer and treatments and death and dying? Am I willing to change my mind about love and what real love behaves like? Am I willing to change my mind about what my mind tells me?

What If the Opposite is True?

I had a powerful experience yesterday. I was—as I so often do—mentally rehearsing a situation in which I believed that I was going to have a big conflict with John. I was imagining a scene in which I would be left out, disrespected and not important. Given that I was gathering emotional ammunition and preparing both my attack and my defense”: “He should…” “It’s clear that…” “If you loved me…” etc. And in my mind I was going over this again and again working myself into a state of fear and frenzy.

And then—seemingly out of nowhere—I pictured the very scene happening as I thought he wanted and I saw that it was perfect; not only was he right but that if he did it the way he wanted it would meet my needs more clearly. It would make loving each other easier.

The contrast was so sharp and so startling that it really stopped me cold. There I was, ready to make a scene and let him have it-- and being the nice guy that he is he’d probably do it my way just to please me. And if I had my way I would be the loser.

The realization was so stunning and my error so dramatically off that I began to think: What if I have it backwards? What if other things that I object to or fear are like this too? What if the exact opposite is true?

Addiction to Fear

Last night I lay awake from 2am until 6am. In the first hour I was running an inventory of all the bad things that could go wrong in my relationship: he will do this or that; he will say this or that; he could get sick, die, leave me, love someone else. With each one I complete the thought with my possible response: I will say this or that; I will do this or that and always, always: I will feel terrible.

Now what is interesting is that I don’t need any of those things to happen to actually feel terrible. No, efficient gal that I am, I have already made myself feel terrible just by running through the scenarios and previewing or rehearsing the outcomes. The effect: I feel like shit.

It’s not new behavior. I have done this most of my life. I suspect I started this as a kid but then it was just background music. The sound track to a scared kid’s life. It was, I suppose, to be a kind of inoculation. If I can imagine it then I can be prepared for it maybe? But it took on a life of its own. Now it’s a habit.

It is an addiction too I realize because it actually produces a physical effect. I release adrenaline and cortisol into my body. Hence awake in the wee hours. That also is not new. I have been able to make myself crazy with rage or grief or terror with scenarios that never occurred. I produce the emotion and the physical effect.

You can imagine how good this is for the relationship.

But last night awake in bed and then in the living room I was able to see this from a slight angle. Maybe I was just tired enough to watch myself do this and I asked myself: If I spend 90% of my thinking time creating scenarios to scare myself what would I instead think or feel if I could reduce that by say 60%? I’m not sure I can stop this addiction to fear or this habit of shooting up my own adrenaline using only my mind but if I could interrupt it and reduce it what would that produce?