Saturday, December 18, 2010

It's Not About Me...but then maybe it is

Caregivers always apologize when they talk about their stress or their tiredness or their troubles. It’s almost a guarantee that if a caregiver dares to cop to feeling bad, mad or sad—or God forbid resentful—they will immediately say, “But I know this isn’t about me.” Or “But I’m not the one who is ill.”

But then again, maybe you are.

Here is more from Professor David Karp (“The Burden of Sympathy”): “All illnesses are potentially contagious in the sense that the stories of sick people become deeply woven into the biographies of those who feel commitment to them.”

Wednesday, December 15, 2010

The Burden of Sympathy

Another great book—this one is not new –it was published in 2000 and I stumbled across it looking for something completely unrelated. The book is called “The Burden of Sympathy” by David Karp. Karp is a sociologist who writes about caregiving and families of people with chronic mental illness. “The Burden of Sympathy” is his third book and this one is for all of us who are caregivers to people with chronic illness of any kind. And for many cancer is chronic—until it’s not.

Karp writes about the psychology and sociology of caregiving—but even though he is an academic, his writing is not. In minutes I was flipping chapter to chapter and underlining sentences—always a sure sign that this book has to become one of mine.

Here is the quote that opens Chapter One:

“As little as we know of illness, we know even less of care. As much as the ill person’s experience is denied, the caregiver’s experience is denied more completely.”

Saturday, December 11, 2010

Looking for Signs

I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid, but part of me wants instructions that spell out clearly what I should do with my life.

I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.

Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.

But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We've had Hanukkah, now Solstice and soon Christmas, all great stories about finding light.

The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.

In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”

Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?

So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.

This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.

Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.

Tuesday, December 7, 2010

The Glorious Debris

“Every one of us is called upon, probably a few times, to start a new life. A frightening diagnosis, a marriage, a move, loss of a job…

And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another—-that surely is the basic instinct…..Crying out: High tide!

Time to move out into the glorious debris. Time to take this life for what it is.”

--Barbara Kingsolver, from High Tide in Tucson