Tuesday, June 17, 2014

Chemo Brain and Life Stories

Since 1997 I have had the privilege of helping seven dying friends record their life stories. The most recent was in March, when I helped my friend Nancy write her story for her two teenage boys before she died of cancer. (Read my Free Press column about her death here.) Almost everyone I meet says they intend to write their life story “some day.” Some will be lucky and have time. Others will get sick and not be able to do it—they might get “chemo brain.” 

I spent some time on sacred ground recently.

No, I didn’t go to Rome, Jerusalem, Mecca or any other holy place. It happened right here, in a Winnipeg hospital room as I helped a dying friend tell his life story.

My friend, only 49, was dying of cancer. Like many people, she wanted to share the story of her life with his children. Not for publication, or anything as grandiose as that. Just something that told them who she was, what she did and why she did those things.

But cancer is cruel, and so are the treatments that try to cure it.

One of the side effects is fatigue. Not just tiredness, but “something more mysterious,” as nurse Sallie Tisdale noted in her article, “Chemo World: Surviving the Cancer Unit,”  in the June, 2007 issue of Harper’s Magazine. “It’s . . . a loss of vital energy, or what some might call life energy, animation, reserve, or power.”

Added to this is something called “chemo brain”—the inability to think.

For a long time, she writes, it was dismissed by doctors as a symptom of stress. But today “oncologists accept that cognitive dysfunction after chemotherapy is rather common and surprisingly durable . . . people complain of difficulty in finding words or remembering what they’ve read.”

When tiredness and an inability to focus set in, even the simplest task, like writing down your memories, can seem like climbing the tallest mountain. You want to, but you can’t.

That was the case for my friend. Even just spending time talking was hard; about an hour was all she could do, many times.

During our meetings, I asked questions, pulling together the threads of her life: First school, first car, first love, first job, first child and last wishes—and everything in between.

Those times together were sacred and holy moments. I think it was also a form of therapy. In fact, it is increasingly being recognized as a form of therapy, called dignity therapy. 

Through dignity therapy, people who are dying are helped to go over things that are most meaningful to them, document their legacy, and bring closure to their life.

“Dignity therapy can bring comfort and enable a sense of meaning and purpose . . . and allow them to feel that their words will transcend even beyond their death," says Harvey Max Chochinov, MD, a psychiatrist at the University of Manitoba .

In a study conducted by Chochinov, terminally ill patients who participated in dignity therapy were more likely to say the treatment improved their quality of life, and changed how their family members viewed and appreciated them.

My friend is the sixth person I’ve helped write a life story. All of them intended to write their life stories one day. But that day never came. It was my privilege to come alongside and use my gift of writing to help them.

Do you intend to write your life story some day? You know, when you retire or the kids have grown up or things are less busy.

Maybe you’ll be lucky. But what if life doesn’t work out that way? That’s why I urge people to start writing now, not to wait.

Take five minutes each day to jot down a memory about a significant event, a special relationship, a funny experience, or anything else that comes to mind. What do you want your family and friends to know about you when you are gone?

Each life is a story. For people of faith, they are also stories of God’s actions in their lives. It would be a shame not to record them for your loved ones.

According to the old adage, the best time to plant a tree is 20 years ago or today. I think it holds true for writing life stories, too.

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