There's more to life
than living
and more to death
than dying.
Writing a novel about death has changed my life. I never set out to be an expert or a spokesperson on the topic. I'm not worthy of being a confidant to people I hardly know. Yet here I am. Listening. Being convinced that this is a topic we're just dying to talk about, but no one knows how to start.
Until a few years ago, the closest I'd come to the big "D" was in murder mysteries and television. Sure, I'd been to a few funerals for once-removed family members and work associates, but that was after the fact. I wasn't actually around when they, you know, died.
I knew about grief. I knew about the five stages Elizabeth Kubler-Ross identified, and I knew that there were all kinds of self-help programs for recovering from the loss of loved ones. But again, grief is after the fact. It doesn't deal with dying -- the process leading up to the moment when life retreats into something or nothing, depending on what you believe.
When my mother died I naïvely discovered this unmentionable time when a family rises and falls with the tide of false hope, when the dying person undergoes countless demeaning procedures that dismantle her -- first physically, then emotionally -- when doctors come to visit once a day, and when language is lost and protocol rules. Why hadn't anyone told me? How could this go on and on, every day, right here in middle of the best medical system in the world?
I assumed -- wrongly, of course -- that my family had inadvertently fallen into some kind of hidden crack in the system. Then I found out that there's a whole Grand Canyon in medical geography that no one has mapped. And we just let people walk right off the cliff, over and over again! When is a person considered to be dying? How do they want to die? Is it our responsibility to keep them alive or help them die a good death?
"Finding Frances" is a fictitious account of this great divide. I wrote it to start the conversation. But the backstory didn't make it to the binding. The backstory includes all the people who've heard me speak about dying, who've looked around to make sure no one else was listening, then spoken their own story in a soft voice anyway, just in case.
Some are seeking a sympathetic ear, and some are angry about betrayal by the medical system. Some even share a regret that a loved one didn't make the decision my fictitious main character did (she opted for hospice over aggressive medical treatment, the way my mother had). Many of them tell me they plan to do the same thing and die peacefully. I can tell that they haven't told their families, and I'll bet very few of them have specified those wishes in advance care directives. I think most people do know how they feel about their own deaths, and they're more than willing to talk about it if someone is listening.
For heaven's sake (if you believe in heaven, and even if you don't), do talk to your loved ones about dying. Whisper about it if you have to. It can't hear you. Need help? Here are three easy steps to get you started:
- Know how you feel first. In a previous blog I posed a number of questions you can think about before you talk to anyone.
In my next post I'll write about how to take that boogieman out of the closet, wrap him up in the proper legal forms and get him notarized. Then you can dance around him and remove the voodoo spell.
Or, you can continue to steer me aside by the elbow at cocktail parties, barbeques and speaking engagements and whisper about how you relate to my book. I'll nod empathetically, hand you a tissue and take another sip of my drink to choke down my emotion. Then I'll go home, think about you and file your story in my mental folder marked, "Validation."
Here are some organizations that can help you get the conversation going:
Compassion & Choices
National Healthcare Decision Day April 16, 2011
Project Grace
Aging with Dignity
Janice M. Van Dyck is an award-winning author whose latest novel is about a family facing life, love and death.