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.

Colonel Chicken Cares about Your Breasts but not Your Life

More pink madness. More marketing fear.

Does the American Cancer Society care about heart disease? Does the Heart Association care about diabetes? Does Liver care about Lung? Does Chrohn’s and Colitis care about strokes? Does anyone care about all of you?

Our health care, health research and health education have become so fragmented because of marketing—and money—that it seems as if no one cares if you live or die they just want the organs they care about to survive. You can go ahead and die, they seem to say, as long as you don’t die of OUR disease.

A current ad campaign by Kentucky Fried Chicken is pitching a special promotion for fried chicken and The Susan B. Komen Foundation. You can now buy a big pink bucket (a bucket!) of fried chicken for the woman in your life and 50 cents from each big pink bucket of FRIED chicken will go to breast cancer research.

This makes me crazy! Does anyone want breast cancer? Nope. Do we want to prevent deaths from breast cancer? Yep. But this fried chicken campaign begs me to ask The Colonel—and Susan B. Komen: Do you really care about women’s lives and their health or only about breasts (both women and chicken)?

Here’s a fast bit of women’s health research: More women—more by far—die of heart disease than breast cancer. More women will die of cardiac related disease than breast or any other cancer. So if you really want to promote women’s health do you want to encourage us to eat buckets of FRIED chicken? (We know that you think we are babies—all that pink crap we have to endure, but you also think we’re stupid and can’t Google the words: breast cancer versus heart disease.)

What’s next? How about some pink Marlboro smokes? Pink Absolut vodka shots? A gallon of pink Hagen Das Ice cream and pink Wise potato chips consumed on a big pink couch in front of a pink TV?

Come on Susan B. Komen, get some balls—or are you leaving that to The Lance Armstrong Foundation? Will one of these health charities have the courage and integrity to care about the whole woman? To say to women—and the market-:A whole woman has boobs and brains and a heart and lungs and we need to take care of all of it for good health and a good life.

Prevent Cancer

A friend of mine is an educator for The American Cancer Society. The info below is from her tagline. Startling when you think this thru. All we fuss about with cancer and One Third of all cancer deaths are related to what we do to ourselves and One Half can be prevented! Holy Chemo Batman!

Tracey's tagline says:

One-third of all cancer deaths are related to nutrition, physical inactivity, and being overweight or obese. One-half of all new cancer cases can be prevented. Check out cancer.org/greatamericans to learn what action YOU can take to protect yourself!

The Marriage Artist

I was talking to my friend Stephanie yesterday about John and our plans to get married in August. “Why get married?” she asked me. The question, asked by others too, has nagged at me. Why get married when we have both been married before; when we won’t have kids; when we don’t know what might happen to his health or to our lives?

Perhaps the implied question: Why are you getting married again? Both of us married before –four past marriages between us--so why again? We talked about the cultural issues, the social status, the fact that marriage carries an additional satisfaction knowing that there are some who have bet against our relationship.

But there is something else: I like being married. As I’ve described it to friends, I like the container of marriage. I have always envisioned marriage as a container in which two people concoct something chemical, physical, emotional and spiritual. Some of the creations live a long time and some don’t. Some have stunningly beautiful chemical reactions, some make stinky messes, but all are living things.

Yesterday talking to Stephanie—as we pushed and pulled at this idea --I realized another part of this. Marriage is a creative act—and yes, in a way that living together is not—the materials are more expensive, there is an audience and there is no net. The very legality adds a risk factor. Seeing marriage as a work of art and myself as a marriage artist came closest to making sense of why I am willing to do this hard, imperfect and often uncomfortable thing over and over. Perhaps it is a kind of performance art created in front of a live audience. Or an installation –bizarrely conceptual and wildly improvisational.

It is also why the question, “Are you happy?” seems irrelevant to me. Friends-- wondering about this marriage –have asked me, “Are you happy?” But that’s not the question that I ask myself. I’m not always happy. What artist is? But am I interested? engaged? challenged? stretched? learning? surprised? perplexed and ultimately deeply changed? Yes to all of the above.

All of these years trying to find my medium, here it is at my finger tips. Marriage as medium. The marriage artist.

Letting Go of My Father - Magazine - The Atlantic

Letting Go of My Father - Magazine - The Atlantic

Here is a powerful caregiving story and a picture in neon of what caregiving stress is like.

God is Love is Sex is God

Church, passion, kneeling at communion. Our shoulders and hips touch but our prayers are private and intimate. God forgive me, change me, heal me, bless him, show me. Bread in wine, flesh and blood and we eat it kneeling. Devour a man’s body and juices on our knees. We drink blood. Absolute carnality, absolute intimacy, absolute love.

Rising we are healed, saved, restored.

We reenter our pew and he grips my hand so hard. There are tears in his eyes. He chokes, “I love you.”

We come home to the New York Times, mocha coffee and Italian pasties from Bella Napoli. I’m reading about palliative care and he is in front of me, tears again, kissing me, tugging at clothes.

“Is there any greater compliment than a man who wants to f*** you?”asks Helen Gurley Brown.

And he does. And we do. Laughing, grunting, crying all over each other’s bodies, mouths, hands, fingers, legs.

Finally tired and hungry.

God is love. Sex is love. He is risen today. Amen

The Easter Brother

I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny. In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”. As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first.

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”.

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope. It was not a hope of miraculous recovery for either brother, or necessarily for a reunion in the “Great Beyond”, but hope for my own “arose” from the heartache of losing my brothers, my playmates, co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries. Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed.

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk.

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese” Brownie snapshots that Dad took of our Easter outfits.

Apart from any theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through layers of loss and gain.

What Jealousy Offers

In my therapist’s office I read a back issue of Psychology Today from August 2009.

Here was the fascinating tidbit I learned about jealousy:

French Psychiatrist, Marcianne Blevis,—(It really helps that she is French I think) wrote a book called, “Jealousy—True Stories of Love’s Favorite Decoy”. She insists that jealousy is a signal—not to blame a partner—but to look within. Inside ourselves, she says, we will find the source of insecurity that makes a rival seem superior to us. What’s at stake in jealousy—she suggests—is not the partner or the relationship—but the survival of our sense of self.

What is exciting about this idea is that it follows another of Blevis’ assertions: All human emotions exist to help us figure out who we are in the world. So jealousy too is a productive emotion for us. This very thing we cringe to feel or are shameful to admit is trying to help us claim a self. Jealousy is a resource that we call on when we feel at risk, when our sense of self is in jeopardy. “When we are jealous we are in the grip of an identity crisis.”

But invariably, according to Blevis, we misdirect our attention. We imagine our so-called rival with an aura of magical attributes—yet we are the one who assigned those attributes to the rival!—and they represent (hello projection!) something unrealized in ourselves.

I love thinking like this and ideas like this that turn it all upside down.

Think about the kind of people who trigger jealousy for you. Pretty? Young? Sexy? Smart? Successful? Children? Travel?

They are shouting thru a megaphone—This is what I want! They are invitations to take a step toward something that YOU want.

Time Travel--What is Meant to Be

I am reading “The Time Traveler’s Wife” by Audrey Niffenegger. The movie was so-so but the book is intriguing and delicious. It is one of those books that would never have survived an MFA program workshop..I can just hear the whining—Time Travel!!

But yes and it works. It works in plot and in metaphor and in spiritual challenge. It raises the questions of why we are where we are in our lives and why some relationships make sense even when they make no sense at all.

This week I read several articles that say that relationships like mine with John, “never work” but this one seems too. And we were both in marriages that were “perfect” but then in what way were they not?

“Were you looking for me?” I asked John yesterday. And he said yes, “all of my life”. “I was so afraid I’d die and never have loved like this.”

Those are the kind of words that you do read in romance novels. WE have them here and we have all the other kinds of words too including, “screw you” and “No friggin’ way”. But I keep praying and trusting—and sometimes not trusting.

Will we someday know why this happened in our lives? Will we get a note or a nod from the future and have peace with the cost of being together? I don’t know but I like to think this was meant to be.

Married Illness

Here is a new and wonderful book about making a good—or decent marriage—while facing chronic illness. Called: “A Husband, A Wife & an Illness: Life Beyond Chronic Illness” written by Dr. William July and his wife, Jamey Lacy July.

They had just begun their marriage—his first and her second when a terrible auto-immune illness began to torture her. A former personal trainer and super athlete she was reduced to chronic pain, a life of medical appointments and treatments and a changed body and appearance. The blows were to her and to them. They went bankrupt, lost their dream home (her big income was gone overnight) and their lives were changed in every way. But, they write, they found a way to make a marriage in this long painful illness. It helped that Dr. July was and is a marriage and relationship counselor. But even knowing doesn’t always mean doing.

Powerful lessons from his mistakes and their almost mistakes: the well-spouse has to keep living; has to have a life apart; has to have a self. Not easy to do is it caregivers?

For many of us cancer too is a now a chronic illness. Our minds if not our lives are focused on what’s next, fear, and planning.

Here is a book that is simple, practical and very forthright about how a marriage can survive and sort of thrive in the face of all that.

For more practical wisdom go to theri website: http://www.couplesfacingillness.com/

Letters from the Land of Cancer

A new book adds perspective to the thing I have often challenged: the idea that cancer is a war. Obituaries say, “After a valiant battle with cancer”, “He/she lost a heroic fight with cancer.”

In his last book, “Letters from the Land of Cancer”, Walter Wangerin writes that it is not cancer we fight but mortality. And in that we all are engaged no matter the disease or even those who are blessed with the gift f long life. We die, we die, we will die. Sooner, later, easier or hard. We will die.

What he adds to this discussion—even as he writes during his experience with terminal lymphoma—is that if our battle is really with mortality then—for those of us who have faith—we are engaged in battle with God.

Dare the obituaries say, “After years of fighting God on mortality she finally surrendered.” Or how about this: “After a lengthy battle with God—in the land of cancer—God won.”

Ask the Right Questions

1. Is this an act of faith or an act of fear?

2. Is this an act of self-love or an act of self-sabotage?

3. Will this choice add to my life energy or rob me of my energy?

4. Does this choice empower me or disempower me?

5. Am I choosing from my divinity or my humanity?

6. Will this choice bring me long-term fulfillment or bring me short term gratification?

7. Am I standing in my power or trying to please someone?





from The Right Questions, by Debbie Ford

All of It

A friend of mine told me what a wise friend of hers told her when she was contemplating marriage to the man she had been living with.

The friend told her to get very quiet and “make a list of all the things that upset you, annoy you and that you don’t like about him”. Then very carefully look at that list and ask yourself: “Can you accept each item on that list?”

If you can, then you can marry him because those things will not change.

Failing and Flying by Jack Gilbert

Everyone forgets that Icarus also flew.
It's the same when love comes to an end, or the marriage fails and people say they knew it was a mistake, that everybody said it would never work.
That she was old enough to know better.
But anything worth doing is worth doing badly.
Like being there by that summer ocean
on the other side of the island while
love was fading out of her, the stars
burning so extravagantly those nights that anyone could tell you they would never last.
Every morning she was asleep in my bed
like a visitation, the gentleness in her like antelope standing in the dawn mist.
Each afternoon I watched her coming back through the hot stony field after swimming, the sea light behind her and the huge sky on the other side of that.
Listened to her while we ate lunch.
How can they say the marriage failed?
Like the people who came back from Provence (when it was Provence) and said it was pretty but the food was greasy.
I believe Icarus was not failing as he fell,
but just coming to the end of his triumph.

"Failing and Flying" by Jack Gilbert, from Refusing Heaven. © Alfred A. Knopf, 2005 .

Chopin's Heart

Today, February 13th is the birthday of the Polish composer Frederic Chopin. When he died in 1849 his body was buried in Paris. But his heart, at his special request, was placed in the wall of The Church of the Holy Cross in Warsaw.

Where would you like your heart to be when you die?

Where is it now?

Don't Name It

I heard an artist speak this week about making art and how we see. He was talking about perception, and how thinking distorts what we see.

He said, “The best way to see something is to NOT name it—words stop seeing.”

It’s a challenge but it works...when you look at a tree try to see it with out saying “tree” to yourself or telling yourself all the things you know about trees: green, vertical, growing, leaves, etc. Just see without the words and you’ll see more.

Pretty cool.

Then it hit me; I could try doing the same thing with people. What if I saw him without saying, “John” or “lover” or “cancer” or “teacher” or “man” or “mine” or any other words that typically flow thru my head unbidden? What would I see if I looked but didn’t label and didn’t name?

Sights & Smells

We went back to the Oncology Center yesterday for John’s check-up and quarterly tests. So far so good. Basic blood work was OK. But we now wait a few days for the “cancer marker”. What struck me yesterday was the sensory recall we each had at the chemo center. I could feel and taste the rooms and I could feel my body contract and prepare as I did every week we went there. The waiting and eating and waiting and watching. But I was surprised when John said, “I have to get out of here before the smell kills me”. He could smell the old smells. I smelled nothing but he had recall and recognition of the smell of the place—and the smell brought back all of his bad feelings about those months of chemo.

Oncology Day

I have been grumpy for the last week. Grumpy to the point where I knew it was me and not him. Fussing at every little thing. Making any little thing into a big thing. Then I turned the page of the calendar: February. And there it was. The four month check up with John’s oncologist. Blood work and the tests.

It’s fear. It gets better each time but does not go away. I imagine the worst. Imagine what they will say, what he will say and what I will do. I imagine the hospital again and chemo again, and I think about the stats. The terrible statistics for colon cancer.

I remind myself feelings are not facts. I remind myself he is in God’s hands. I remind myself that I am in God’s hands too. And then I start to outline a very specific course of action for God.

Oh well, this is the day. We’ll go to the doctor. The good news is that this day puts work, hair, jobs, people and all other issues in perfect perspective.

Beyond Faith. Where is God in Cancer?

Does God cause cancer? Prevent it? Choose who gets it? Will he cure it? Cure it for some people? Our view of God is revealed in our prayers: God as punisher, as father, as parent or as Santa. In prayer do we ask for magic? Special consideration? Or do we ask for strength to cope with what is? Perhaps we petition for someone else’s cure? Do we believe that some people should have --or not have --difficult things, like cancer, to deal with?

A common first response to a diagnosis of cancer is, “Why Me?” Some people stay there and others move on to, “Why not me?” Implied in this is a sense of God or Higher Being or Mover in our lives or the universe.

Cancer often leads to these big questions. And that sends us looking for resources, experts, and theology. Now, a new book “Beyond Faith” looks at an intelligent person’s belief in God. The book by former trial lawyer, William Penick, deposes God in a thoughtfully imagined interview—yes, with God, and shows with humor and insight into human nature, how we create God.

Do You Still Have Cancer?

I have noticed a way that people will sometimes try to ask about cancer without actually asking about cancer. Saturday we were at a basketball game and John was seeing folks he hadn’t seen in a while. I heard several—guys—asking him, “So how is EVERY thing?” John would answer, “I’m good; I’m good”. I heard the question buried in the question: Do you still have cancer? I get this too sometimes, people will ask me, “How is he DO-ing?” and it is the slowing down in the question and the odd emphasis on “every” and “do” that signals the question they want to ask but don’t want to be caught asking: Does he still have cancer?