About twenty years ago I got divorced from a man I’d been married to for over twenty years. As divorces go, it was a relatively smooth one, but it was still one of the hardest things I’ve done in my life: to say aloud that I didn’t think our marriage was working. As a woman and a New Englander, I was groomed to avoid conflict, to carry on quietly even when things didn’t seem right, and, as a middle child, to be a mediator. For most of my life I’ve felt it necessary to keep my desires hidden. The choice to become a writer was the choice to be an observer, taking the world in from the sidelines. I don’t mean to suggest I have been entirely passive or disengaged with life — I have been very engaged — but I’ve concealed a part of myself. Even as a child I remember saying, not infrequently, “Don’t look at me!”
Embarrassing as it is to admit, it has taken me a lifetime to learn to speak up and say what I want, to acknowledge desire and ambition, despite knowing it’s okay to do so. Though I came of age during the second wave of feminism, it has taken time for the messages of feminism to take root under my skin, in my organs and gut biome. During the divorce I was in therapy and a recurrent theme of our discussions was my fear of being too “big,” taking up too much space, being too expressive. My wonderful therapist encouraged me to be big, and I am eternally grateful for that. In the last twenty years I have tried to internalize her words, sometimes successfully, sometimes not.
A fiction writer friend and I made a pact a few years ago that we would never write memoir. We promised to save each other from the embarrassing self-exposure memoir entails. We would continue, as writers, to use our fictions to conceal our messy selves. What a relief it was to make that resolution. How safe it made me feel to think I would continue to express myself hidden behind the buffer of fiction.
Cut to the fatal diagnosis. I never consciously decided to write about myself, but the dire and sudden nature of the situation led me to writing as a way of looking at what is happening to me and trying to understand it. The word “essay” comes from the French word essayer which means “to try.” The 16th-century French writer, philosopher, and statesman, Michel de Montaigne, popularized the literary essay as a means of attempting to learn or understand something. I can attest to the usefulness of this form of writing. In each of these blogs posts I have been probing something that obsesses me but which isn’t clear. The process of writing has brought a bit more clarity.
What of the self-exposure I’ve engaged in here? What about the pact with my friend? I can only say that the imminence of death has changed my view about that — and so much else. I feel so acutely aware of being human, one human being among eight billion. As much as it is possible to know, I think I am mostly like those billions of other members of my species. In addition to wanting food and shelter and health, I have wanted to live and work among people I love; I’ve wanted to have some control over my life; I’ve wanted to be stimulated and involved and to understand life’s mysteries. I am aware, too, of the various ways I’m different from others, but not so different that there aren’t thousands — maybe millions — out there like me, people who like to write, and laugh, and dance naked (among other things). I think we often take our differences too seriously.
So, the honesty about myself that seemed too revealing a while back now seems, dare I say, helpful to others who might see themselves in me. I say this despite the quiet voice that still whispers, Why do you think anyone would care what you’re thinking and feeling? Stop being so big!
This concern about bigness has made it hard to mention that a documentary film is being made about me — and my family and friends and how we are all facing my imminent death. At the beginning of the pandemic I met a woman, Sandra Luckow, in an online forum. We were drawn to each other because we have a lot in common: We were both undergraduates at Yale and we both went to NYU film school; she grew up in Oregon and now lives back east; I grew up back east and now live in Oregon. While I left film a number of years ago, she has become a documentary filmmaker. We began Zooming together and had several lively, free-ranging discussions. I liked her because she is smart, has strong opinions, and likes to laugh. When I began losing my voice, but before I was diagnosed, I told her I could no longer Zoom with her. She heard nothing wrong with my voice and didn’t understand, was even a bit put out, but we stayed in touch through Facebook, and she began reading my blog.
In early 2022 Sandra suggested that she make a documentary about me. I was surprised and flattered and, because it is my habit to say yes to things, I said sure, what fun. She has visited Oregon from New York three times since June, and she will return in January to shoot my Death with Dignity. We have become close friends. She shoots with a gussied-up cell phone equipped with high quality lenses and a mini-Steadicam, a setup which produces high quality images and allows her to move in and around our lives inconspicuously. As a former filmmaker I have enjoyed being immersed in film again.
Being the subject of a film has raised the issue of bigness again, but I have felt curiously unambivalent about appearing on film. Back when I was in film school, I couldn’t stand seeing and hearing myself for the few seconds it took to do the clapboard. I felt embarrassed and self-critical. Now, more than forty years later, diseased and wrinkled, I am curious about seeing myself, curious about how gnarled and angular my body has become. Only occasionally do I feel vanity rearing its ugly head. And I don’t see myself as too big. The little girl who begged “Don’t look at me” appears to have vanished. I am simply here, sharing my situation for whoever might be interested after I’m dead.
I wonder how my life would have been different if I’d been less afraid of being seen earlier on. I’m not talking about my naked body; being the prankster, I’ve always enjoyed the ability to shock with corporeal exposure. Perhaps nakedness has been the buffer that kept heart and soul from being seen, a buffer like my fiction. I wonder if my greater openness to being known now is common to many people facing death — I have to think it must be. My proximity to death has also prompted people around me to be more open, saying things they would never have said to me even a few years ago.
Perhaps this is another reason we should cherish the mystery of dying as much as we cherish birth.