Tuesday, June 19, 2012

Legacies of Words

 I've lived around writers, artists, and musicians for most of my life. Every event, no matter how major or minor, was immortalized, displayed, and performed. No one just died. They went out in one last superbly scripted, choreographed, and wrenched from the guts of creative angst-inspired performance art. Very often this art was created in the final months, weeks or days of life. We saw only the end result, and rarely, unless we were close to the artist, the process that created it.

But blogs changed all that, especially for writers. The personal became the painfully blogged, and the inner torment, the doubts, the rage, the fear, the sadness, and the acceptance became a shared journey. I remember the first time a friend sent me the url to what she called her Cancer Blog, there was this initial moment of horror, this feeling of voyeurism, this sense of intruding into what seemed far too personal to share.

It was also terrifying as I was still recovering from coming up against my own mortality. There were issues, fears, and doubts I was still resolving inside myself and I was afraid my own pace would be disturbed if I ran alongside someone else's race against time.

Nearly a decade later I've said goodbye to far too many wonderful writers and artists who left us way too early. Most of them kept blogs, especially the writers, and I've come to see their words, their months of describing a journey we all have to make at some time, as a valuable gift to the world left behind.

 Even though everyone approaches illness and death differently, it is the process we all seek to understand. We want to know what it feels like the moment when it becomes inevitable. We want to know the questions we would ask, the answers we would accept, the words we would struggle to say and share with our own voices. We want to know what it feels like to die.

I still feel like a voyeur, a fraud with my health, my future still ahead of me, when one of my friends starts her own personal cancer blog and asks me to read it. But I've come to understand illness and dying are two separate sides of the same goodbye and it helps them to know I am there reading their words, that there is a place all of us in their lives can go and be updated, shared with, and comforted.

 There are things that are universal, and there are things only experience can teach us. But with the amazing courage of these women who described their illnesses and then their paths to dying, we have an insight into what was once only an intellectual description found in textbooks. We now have the personal from the initial diagnosis, through treatment, through hope, through despair, through the moment when each blog entry grows closer to the end and the reality sinks in that it's not just a novel, it's not just words on a screen. It's yet another woman, another friend, another writer, another courageous human being sharing her final journey in order to make ours less lonely.

Within the despair, the tears when days have passed and there have been no new posts and then suddenly there is one, but it's a family member instead writing the last post, there is also something very important that has grown from the millions of words. Through years of writing about their experiences, the dying have left behind a library of information related to treatments, options, financial and psychological assistance, and the many details that are so important to saying a clean and uncluttered goodbye.

They've given support and much needed understanding to women who find themselves diagnosed with a serious and often terminal illness. From the blogs have grown websites with forums dedicated to the issues first written about and shared among women and a handful of friends and family. No one has to die alone anymore. No one has to feel they haven't exhausted all the options out there. There is a community of the newly diagnosed, the long term treated, the terminal, the family, friends, and left behind. We have shared something that never used to be shared so completely.

It is a form that is still evolving. One of the curious things to me as person, is how strangers start following a dying person's blog and become part of the community. As a writer I understand it perfectly. There are blogs I read just because the person is so fascinating and what they have to say so unique and educating, that it doesn't matter if I know them or not.

Usually they're not dying, but a couple times in the last year I've been directed by a dying friend or two to blogs that are followed by thousands of people. It's as if a fascinating new person has moved into the neighborhood and is a superb writer who manages to catch us all up in the fascinating process of her dying. We all sit down to tea and listen and get caught up in her life, her treatment, her dreams, her hopes, and when it all comes crashing down to the reality of death winning most of the time, it's as horrible as if she really did live next door.

And in this way, I believe the world grows a bit more human. If we can share the most intimate part of our lives in such a way, if we can leave such a gift of community behind, such a legacy of all sharing the same hopes, the same dreams of a miracle cure, the same sense of loss when the inevitable family member post appears, then maybe through our dying we can finally learn to live as one people on one planet.

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