Sunday, November 8, 2009

October 8th, 2009:

After my big sleep during the middle to end of this week, I thought that would be enough event. But no. Apparently, while I was in deep drift, I did some major re-organizing of my book. The issue that I dealt with was how to best communicate my information to the readers. It became clear to me that there are not too many people out there who are going to want to script a summary of their life, hire a film crew and put the results on a CD for their memorial service. Some people perhaps, but not a lot. More people may want to set up a blog and document their daily ups and downs.

Even if there are people who are excited about these forms of communication, my intention is not to write a book that focuses on how I did it, rather, I'd prefer to help people go into themselves and empower them to discover their own creativity. The result would be a book that highlights other people's creative outlets and has as a sub-theme my discoveries about how to reach out and form community at the end of life.

At the end of the last century when the fiber optics infrastructure was being laid out across the world, there was much talk about the "last mile technology." What this meant was the final reach from the big fiber bundles to the desktop PC. I felt like I had to address that issue with my book as well. If I write a book that's all about my interesting ideas and their execution to an audience that won't ever implement those ideas for themselves, well, the book will be tossed. As a reader, I want to be told something that pertains to me. Currently, I don't feel that the book has an encompassing reach that will be riveting to enough people. Again: some people, but not enough people.

So, what will be encompassing? And what I kept coming back to was the issue of tapping the individual's own creativity. Many people are willing to take a look within and make decisions about their commitments to helping build a community at the end of their lives. Many techniques are simple, some more complex. In addition, I think it's easier to make a commitment when you are already part of a support community. When I look at the history of civil rights movements that have changed American culture, there have been many successful models of consciousness raising groups of one form or another. Feminism pioneered the consciousness raising group as a method for creating a safe space for women to express who they felt they were. In this case, end-of-life support groups could empower each participant to face their fears and hopes. There would be issues to resolve. Would the groups be sex specific? Would some groups happily integrate men and women? What to do in those groups that have aggressive men? Who would facilitate the groups?

The latter answer dropped into institutions that are already up and running; namely hospitals and other large clinic settings that have big patient populations with clients who are terminally ill. Here in San Francisco, there are many support groups for terminally ill populations at UCSF and CPMC. There are yoga classes for terminally ill patients. There are cancer-specific support groups, for example, The Leukemia Support Group etc. All of these groups have traditionally stressed treatment. Even if we can't make you better, we can help you to feel better. The Organize your Friendship Network group would be no different. Other than now, it doesn't exist.

So while lying flat on my back at Maitri in the first month of November, I've happened on a largely unexplored civil rights movement that helps people gather their communities to them. Reason to gather in friends is to maximize love and that feeling you sometimes hear about from survivors who say, "Right at the end, there were such special moments. I've never felt such a closeness. It was really beautiful. I felt so much love." The phrases go on.

What an interesting and challenging opportunity has landed in my lap. It feels very satisfying that the book has shifted from a focus on me and what I've done to a larger, community-based movement that allows many people to "come out" about who they are and want to become. Interesting--no?

No comments: