Monday, September 12, 2011

Why I fear death

"When you are standing at death's door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence the words that come out of your mouth."--Harvey Chochinov

I was listening to NPR this morning. The segment Your Health came on, and the topic was dignity therapy. The phrase caught my attention because of how much I value the concept of dignity, being dignified, giving others their dignity. Dignity therapy is practiced on the dying--the "lucky" ones who know when they're going to die and can mentally prepare for it while they are still living.

What bothers people most about dying? Psychologists who work with the dying, hospice workers, philosophers, and religious thinkers have all tried to address this question. For some it's the fear of being forgotten, disappearing into nothingness, all of our thoughts and experiences and stories just vaporizing.

Dignity therapy is designed to allay this fear and allow the dying to tell their story the way they want it to be told. The therapy was created by a psychiatrist named Harvey Chochinov. Chochinov was treating a patient with a brain tumor. He noticed that this pale and weak patient had prominently placed a picture of himself on his bedside table, showing him when he was young and healthy, a muscular bodybuilder. Why that picture?

The man was sending a message: This was how he needed to be seen.

As Chochinov continued his work with the dying, he confronted this again and again — this need people have to assert themselves in the face of death. And he started to wonder about it.

"Why is it that how people perceive themselves to be seen should have such a profound influence? How does that make sense? What does that mean?" Chochinov says.

I worry about how I'll be perceived when I'm dead. Heck, I worry about that NOW. It's like an old person trying to convince a child that they were once as young and cute and energetic as they are. The kid can't see it. Or how strangers perceive the elderly, not identifying that they will be them one day. We post our most flattering pictures on Facebook, we tell ourselves stories about who we are--but what will happen when we die? Will that carefully-constructed version of ourselves also be annihilated?

Dignity therapy involves writing down a person's story while they are still here to tell it. The therapist asks the patient questions and records details that are important to him or her. The document is then transcribed and edited by the patient to their satisfaction. When the patient dies, the document is given to their loved ones. This document often becomes as precious to the survivors as the deceased was in life. Sometimes it even surprises family members, revealing missing details and truthful feelings that they never knew about before.

Does it matter if these patients describe events differently then how they really happened? No. Our perceptions shape our reality; what may have been a disastrous relationship with a sibling becomes a meaningful and unbreakable bond. A difficult day is remembered as also having some beauty, some value in it after all. In the end, we often see things differently than we did when we were actually in the thick of it, and that's normal. Maybe that's even a good thing.

Of course dignity therapy can't help those who die suddenly, unexpectedly, mysteriously. I have many questions about my maternal grandmother who died before I was born. I will probably never get those questions answered--or not completely--because she left behind so few details of herself. What if she had taken the time to write about her life--even a few pages about key moments would have been a wonderful gift to my mother and me. This was probably what my mother was thinking of when a few Christmases ago, she gave me a journal in which she had written her memories of her life before I was born. A more thoughtful gift is hard to imagine.

And then there are those who experience a living "death." I'm reading a book called Head Cases. It's a fascinating book with stories of people affected by TBI (Traumatic Brain Injury.) There has been a lot of talk of TBI in the news lately--high school football stars sustaining head injuries that they'll likely carry through the rest of their life, military men and women whose head injuries cause a variety of changes in their physical body but also in their personality. The brain is such an amazing machine, but it's also a mysterious and fragile organ that, when damaged, can cause people to forget they have a wife or a child, to think they're dead, to suffer violent rages, or to become highly gifted artists. You think that you will always be the same person, but you won't--whether it's by means of an accident or an awakening, you will change, and then you will adapt as best as you can to your new reality. But we may not want to leave our old selves in the dustbin like some discarded clothing that doesn't fit us. Those old clothes are still infused with our memories, our meaning.

Which makes me think that we all better get writing the story of our lives right now.

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