a new narrative

I'll concede at the outset that my sense of reality may be a bit skewed, or at least offbeat, but here is how I see it: We are the stories we believe about ourselves, the stories we tell about ourselves, the stories others tell about us. We are fictions breathed to life by words. To contrast myself somewhat with Susan Sontag, below, I will allow that I am a deist. In the first lines of Genesis we read how God's words created our world, but in the Gospel of Saint John, written some sophisticating centuries later (and not so long ago really, if we take the long view), there is this interpretation of Genesis:

In the beginning was the Word

The Word was with God

and the Word was God

In my own view, the greater sophistication (or intellectualizing) of the most recent millennium, that is to say Darwin and others, brings us the next, science-driven, reinterpretation (reincarnation): yet another fiction creating another fiction. As will we continue, ad infinitum, as far as we, as human, can see into the future, or see into death, or see into any other vista obscured by our human bodies and minds. At this time.

This week I listened to Terry Gross interview David Rieff on Fresh Air. Rieff, the son on Susan Sontag, has just published a memoir of his mother's dying, Swimming in a Sea of Death . Remarkably to me, this intellectual giant and lifelong atheist was terrified of dying, to the extent that her son was never able to have sober discourse with her about her death, the meaning of her life, her sense of triumph and regret, legacy and loss, last words or stories. She just wanted more life.

Sontag, the author of more than 17 volumes of essays, fiction, and plays--of which I have only read three--is best known, in my circles that is, for Illness as Metaphor and AIDS and its Metaphors. In Illness as Metaphor, she explains her mission to describe

... not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation: not real geography, but stereotypes of national character. ... My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. ... It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.

In the late 80's and into the 90s, when I was dealing every day with friends and patients with AIDS, when there were no real treatments for the virus, I found this book an essential balm for learning to deal with death. I was stunned, on re-reading these words, how much they betray my own need for literature and mythology. I understand how the entrenchment of enforced cultural metaphor in illness and death denies our human freedom. Our individual autonomy. But time has led me to want more, not less, metaphor; less, not more autonomy.

(Very incidentally, I was also stunned to learn on this interview that Sontag and Annie Leibovitz were lovers. Indeed, I may be the only lesbian who was living in the East Village in the 90s that did not know. Ah well.)

Sontag's son was stunned by her non-metaphoric battle against a third episode of cancer, this one remarkably unforgiving, as he was dismayed by her unwillingness to look death in the eye. In his memoir, he says:

Which was her right. I'm sure of that. What I'm far less sure of is whether I did the right thing in going along with and in fact doing what I could to abet her in her refusal to contemplate the prospect that this third time around she would die of her cancer. Looked at from a distance, this is probably just one variant of what you might call "the loved one's dilemma." The questions tumble out, in wakefulness and in dreams. At least, more than two years after her death, they continue to for me: Did I do the right thing? Could I have done more? Or proposed an alternative? Or been more supportive? Or forced the issue of death to the fore? Or concealed it better?

I was awed by Rieff's dedication to the work of helping his mother at the end of her life and the valor he displayed in his struggle to do right by her. His unflinching efforts to recognize what belonged to her and what belonged to him. To refuse to fictionalize the experience as he walked through it.

As circumstance would have it, I have this month returned to editing my poetry collection, The Conversion of Saint Jon, and re-investing energy in the goal of getting it published. I began writing these "Jon poems" seven years after his death in 1993, after reading his journals. I have diddled with them off and on over these many years, years during which my mother died and I began working as a hospice nurse and now a palliative care nurse practitioner. Today, I face death as I face life, a fiction that cannot be true, but cannot be false.

During his interview with Terry Gross, Rieff describes his experience of reading his mother's journals, which she had sold before her death, lightening and darkening his decision to read them, and to edit them for publication. He did not want to read her journals. He found it hard and painful. He had been offered no permission to read them, other than the prospect of their becoming public regardless, and so he thought, who better than me?

I had no permission to read Jon's journals. I took them for safekeeping against his family and held onto them for years before I began reading. I understand Rieff's powerful emotions at reading the personal, intimate musings of a profound mind. Jon's journals dated over 17 years and were full of venom and love, pain and reflection, isolation and anger, wisdom and suffering. Later, going through my mother's personal papers and communications, I felt the same complex remorse and pain, agonized over what to keep, what to share, what to discard.

At the end, my mother wanted more life, did not talk about her death, did not give me the satisfaction of final discourse. Jon also wanted more life. Although he practically thrust death into the mouths of his friends, he wouldn't, at the end, admit aloud that he was dying. He shut out his family and made ridiculous, paradoxical demand demands of his friends to burn him in the street and eat his flesh.

These days I spend time with those in the years close to death either talking openly about it or refraining to do so, according to their wishes. I might say to Rieff that in retrospect, it doesn't matter what you said or didn't say. The agony of pondering these questions is itself rich and worthwhile, but matters little at the event itself. I don't believe that we alter death's arrival or its garments by talking about it or neglecting to. I don't have any greater faith that my deathbed story will be any more saintly in its drama than any I have had the privelege to observe. We die in the image of our lives, are laid to rest bundled in the stories we have created while here. Without really knowing where here is.

And what does this have to do with my own "new narrative"? I don't know yet. But I promise to let you know, at least in my writings. There is much material to plow through to uncover it, and I am toiling as best I can. About death: at least I intend to keep talking about it. Whether you like it or not.