A Year To Live, A Year To Die

Following on from The Emotional Rollercoaster of Caring, I've just come across the searingly honest A Year to Live, A Year to Die. I strongly recommend that you read through the essays and listen to the recordings. It's a complex story of compassion and anger, the juxtaposed emotions that are familiar to so many carers. The widow disusses her grief and the social pressures about discussing health issues.

The background of the story is that:

Mary Beth Kirchner [the producer] received an extraordinary offer from someone who was entering what would likely be the most difficult time of his life. Stewart Selman had just been told he had a malignant brain tumor, and he said he wanted to keep an audio diary.

To tell the complete story, Kirchner asked Rebecca Peterson, Selman's widow, to listen to the diary and share her own memories of his final months. The resulting stories, intimate and full of hard truths, describe how terminal illness can usher a life to its end.

Stewart returns from hospital with the news of his diagnosis with a brain tumour:

I just felt terrible and I really had these incredible feelings of guilt, that I was abandoning my wife. We had made this lifetime deal. I wasn't going to be there when we were old or whatever and she was going to be left with my children and it would be much, much harder.

On a follow-up visit, Rebecca remembers that the neurologist said:

there's a lot of different ways people handle it. But there are some families can pull together and achieve this kind of transcendence.

Rebecca has a hard time matching that rhetoric to the experience of herself and her family:

...transcendence was the word he used -- where they go through their grief and their anger and everything else, but they really have something precious that they hold onto in the end. And I think one of the thing that I feel worst about is the fact that I never felt anything like transcendence. I never achieved anything like that with my family. Instead of things sort of coming together and us having a wonderful, glowing "transcendental" experience, it was really quite the opposite; things just kind of dissolved and got down to a very, very basic survival level.

There are difficult, honest accounts of arguments, and coping with the unfamiliarity of anger and violence.

"I was really scared and really angry," Rebecca said. "I took the kids to the bus stop and came back home and I went upstairs and I just screamed at him, 'Don't you ever do that again to any of my kids. I will send you out of this house, and you will die a lonely man.'"

There are poignant accounts of the children's bewilderment and fear in the face of their father's unpredictable behaviour.

"I had to say, 'You know, your dad is not thinking right, and I want you to be careful around him,'" she recalls. "I remember Noah saying, 'How can you let him talk to you like that? How can you let him treat you like that?' and I said, 'It's just not him.'"

Rebecca got a lot of help from online communities and reading the stories of other people in similar positions. Although, even then, these accounts could seem like a reproach:

"I would read these beautiful stories of people ending their 30-, 40-year marriages and it was so beautiful and they just loved each other right out of existence. And I was just thinking, 'Why isn't that happening to me? Why isn't that going on in my life?'"

It's a movingly honest story of one family and their response to the transformations that illness brought to them. It is, perhaps, an insight for medical professionals who might wonder what happens in the life of the family outside the appointment schedule. It is a story for all those carers who blame themselves for not experiencing "transcendence" or the "spiritual wisdom" that is so frequently promoted as one of the gifts of being a caregiver.

Copyright 2006, Tony Plant Happystance Project