Sunday, December 30, 2012

There are Only Two Stories

It is said that there are only two stories: A man goes on a journey and A stranger comes to town. When I talk to people who want to write about their caregiving experiences I ask them, “Which one is your story?” There is no right answer, of course. Cancer is a journey that men and women go on whether they are the ill person or the well person. And certainly Cancer is a stranger that comes to your town.

In my story John was a stranger who came into my life many years ago. I was a stranger in his life too. After years of correspondence he called one day. Would I come to his school? We became friends. And that lasted for years.  Then more strangers came: romance, seduction and desire. The erotic stranger and a romantic journey. We took the trip. Wildly unprepared. Risking everything.  And then another stranger—cancer—into our life.  I’d met cancer long ago but this one roared in to our lives. Still,  where cancer had devastated me before this one brought a strange healing. Yes it came with so much fear, but fear is not a stranger, rather my familiar through troublesome companion.

 John certainly is on a journey with colon cancer. Life, death, sickness and health are all rising like monuments around us. He is on an emotional journey too. Every test, every treatment has to be met, but these strangers bring things—an insight, a feeling, a friendship.  

If you are having a love affair with cancer what does it feel like to you this year? A journey you have just begun or one that has you standing on tippy-toe hoping that is the next town coming soon? Or is cancer your dark and not so handsome stranger? Is it making you a stranger to your loved ones? That is always the danger. Or is cancer showing you that you were once a stranger to yourself but now you know just who you really are?

Wednesday, December 26, 2012

On Being Ill

"On Being Ill" is one of the  classics of caregiving and illness written by Virginia Woolf. It has  just been reissued by Paris Press in Massachusetts, and perhaps it is coming now as a gift to our Boomer demographic. Paris Press publishes works by women which have not received adequate recognition. 

"On Being Ill" is a long essay originally published in 1930 which examines the spiritual, physical, emotional and familial aspects of illness in precise, marvelous language. In this new edition Woolf’s essay is accompanied by another essay, “Notes from Sick Rooms,” written by Woolf’s mother, Julia Stephen in 1883.

Stephen’s writing is also stirring but practical as well. She offers instructions on pillows, baths, bed coverings and feeding the ill. Separating the two essays is Mark Hussey’s introduction to Woolf’s mother. And a fourth compelling piece in this book is the personal note from doctor Rita Charon, who founded and directs the Columbia University’s Program of Narrative Medicine.  

This slim book combines beautiful writing, history, literature and cultural history as well. It would be a wonderful gift for anyone in healthcare or contemplating a career in medicine, nursing or any aspect of healthcare, and yes, for all of us 50 and over who should be thinking about how we are going to be when we are being ill.

Saturday, December 22, 2012

The Etiquette of Illness

Here is a book that flew under the radar for a very long time and is now getting its due celebration and appreciation. The book is called, “The Etiquette of Illness” by Susan P Halpern and it is getting a long awaited boost because of its mention in the new book, The End of Your Life Book Club” by Will Schwalbe.

“Book Club" is fabulous in its own right—it’s a memoir and the story of Schwalbe’s mother slowly dying while she and her son read through an amazing list of fabulous books. The story contains mini synopses and reviews of maybe 35 wonderful and little known books. My reading list expanded as I read.

But early in the book a friend recommends that Schwalbe should read, Halpern’s  “Etiquette of Illness” so he can learn how to talk to his mother about her illness, treatments, symptoms and eventual death. I went right to the Internet to learn that “Etiquette” was published in 2004. I found her book at the library and will now buy my own copy. This is a gem of a resource and a book to place right next to Emily Post and Gail Sheehy's book on Caregiving.

Here is one of the simple but brilliant take-aways—to ask an ill person, “May I ask you how you’re feeling today?” Do you see that simple but respectful shift from simply asking them? I loved that. And she has so much more wisdom for caregivers, family, and the person who is ill as well.

You might have to buy a used copy but I’m hoping that the recent mention will get, “The Etiquette of Illness” back in a new edition. Halpern deserves that and we do too.

Thursday, December 20, 2012

A Movie for Caregivers

A beautiful new movie is on its way to us from Paris. Opening this week in New York City Michael Haneke's "Amour" is described as a masterpiece about love and aging and, yes, caring for someone who is ill. I have been following this film since is Paris debut and now it is near. This is a movie for all of us because it is about aging--and few of us will skip that..and it is about caring for someone we love--few of us will skip that.

Here at the link below is the New York Times review:

Tuesday, December 18, 2012

Whose Cancer is It?

Here is one of the toughest things about cancer and caregiving—whose cancer is it? And who bears the consequences? Yes, I know it’s really his. It’s his body after all. But, here’s an example: He’s in pain. I hand him the phone. He won’t call the doc. I find a specialist. He won’t ask. I say, “Try this.” He says, “Later”. He doesn’t sleep. So neither do I.

Yes, he is the person with cancer but do I get a vote?
I don't want to be part of the cancer conspiracy. I wait too long to say, “That pain could be related to your cancer.” But when are decisions around his cancer only his? When are they mine --or ours? His denial impacts  my sleep, work, activities, and life. So whose cancer is it?

Talk about a valiant battle with cancer.
(Yes, I am afraid.)

Saturday, December 15, 2012

Dirge Without Music

I am not resigned to the shutting away of loving hearts in the hard ground.
So it is, and so it will be, for so it has been, time out of mind:
Into the darkness they go, the wise and the lovely.  Crowned
With lilies and with laurel they go; but I am not resigned.

Lovers and thinkers, into the earth with you.
Be one with the dull, the indiscriminate dust.
A fragment of what you felt, of what you knew,
A formula, a phrase remains,—but the best is lost.

The answers quick and keen, the honest look, the laughter, the love,—
They are gone.  They are gone to feed the roses.  Elegant and curled
Is the blossom.  Fragrant is the blossom.  I know.  But I do not approve.
More precious was the light in your eyes than all the roses in the world.

Down, down, down into the darkness of the grave
Gently they go, the beautiful, the tender, the kind;
Quietly they go, the intelligent, the witty, the brave.
I know.  But I do not approve.  And I am not resigned.

--Edna St. Vincent Milllay

Wednesday, December 12, 2012

Visiting the Hospital

Tonight I went to St. Peters to visit a friend. I was listening to a book on CD so it only hit me later--in the elevator--that I had clicked through the winding road, the valet parking, the coffee stop in the lobby, and the maze of elevators and then Oh! I knew my way without thinking. That's good news and bad.

I think what woke me up were the faces of other visitors--that stunned look. And that ashy "been here too long" look of families who don't know if it's night or day. I ache for them. It's a privilege and a luxury to be visiting a friend and to know that --this time-- it's not my family.

I learned my way around ICU years ago when everyone in my family was so sick. Then I  was one of those numb, scared, ashy people. It shaped my life absolutely and gave me a passion and fierceness about caregivers. But still. I was grateful tonight that it wasn't me. Not my turn. Not now.

Sunday, December 9, 2012

New York City

This weekend was New York City. We had the good luck of such mild weather and so on Saturday we took the bus to 89th and then walked all the way down to 39th again--with lots of stops along the way. Tried to do some Christmas shopping but nothing felt inspired. I know, how crazy--in NYC--but nothing felt right.

We did have a wonderful time at The Frick Collection. The recent movie, "The Late Quartet" has a scene in the lovely fountain gallery and it reminded me that I wanted to show John that museum. We lucked into an exhibition of best drawings from the Courthalt Gallery in London, including Mantegna and many Turners. The one that I wanted to bring home was "After the Shipwreck" by Turner. A small watercolor, so unexpectedly beautiful and poignant. A small dog looks at the ocean. At first you'd assume the title must be wrong, then realize, this small creature is waiting, looking and alone. Yes, a caregiver motif for sure.

We followed that with our own medicine though, a visit to Maison du Chocolat for macaroons and coffee, and I did look at a lot of clothes and books and well, more books. A sale at Argosy Books was a treat--but again, no inspired gifts. The best part was watching the skaters at Bryant Park before we left for home. The music and that laughter began, finally, to feel Christmasy.

Wednesday, December 5, 2012

Making Lists

I have always been a list maker. A friend once teased that, “Her lists have lists.” But the joke was true. I even have a master list of packing lists. There is the New York City Packing list and the Cape Cod list and the Kripalu Packing List and the Camping Trip list. I mean, really, these are vastly different undertakings, no?

Another list memory: my first husband—and this may be why he is an ex-husband—once wrote on my daily to-do list: “Inhale, exhale, inhale, exhale….”.

Even at that I have defended my lists. Maybe it’s outer order balancing inner chaos? But my defense is always that I get a lot done.

But yesterday reading a wonderful novel called “April & Oliver” by Tess Callahan I read this line:  “Lists are for people who don’t do what they want.”

It struck me to the core. If I was doing what I really wanted would I really need a list?

Tuesday, December 4, 2012

Back to Life

I'm back from the Cape and back from my writing retreat. Back from a week of solitude and quiet and writing at all hours. I'm reentering family, marriage, work, health, commuting, shopping and healthcare. John has a cold--again. I gave him mine then took his, now we swap again. Yesterday a biopsy of my shoulder. Ouch! Took a big chunk of me and gave me stitches. Why didn't I think about the stitches. I had no pain but I could feel the sewing motion--kinda creepy. No shower for two days and then wait for results. and no lotion. That's a hardship. I love my Bulgari lotion. Luxury problem really. My life is mostly luxury problems.

Thursday, November 29, 2012

Memento Mori

The ancient Romans used to carve “MM” on the bases of statues and on the trunks of trees. The letters stand for Memento Mori: Remember Death. This was not intended to be morbid but to be a reminder that life is short and death is always near. It was a tool for perspective and discernment. Philosophers and writers might keep a skull or bone on their desk for the same reason. Carlos Castaneda recommended that we live with death on our left shoulder and to consult him on our daily decisions.

Maybe this is one of cancer’s gifts. Death is close by in Cancer Land. You look at the person you are caring for, or you notice it in the others you meet at chemo or in hospital. Ordinary doctor visits are never the same. You never know when a routine check-up will lead to that phone call, “The doctor would like you to come in for another test” or “I’d like you to see a colleague of mine.”

Can we accept death’s presence for the gift that it is? Given that death is part of our lives it reminds us to ask, “What really matters?” Given that I will die, what do I really want?