Choice Post

I’ve been drafting ideas through the spring to write about, but did not ask my mind to do more than it could do in a healthy way. Without a Director or a full staff at my job, the extra thinking and work required to keep rolling took up some creative mind space. 

That’s how it works, isn’t it? Some people put militant boundaries around their creative time and space, and some of us compromise it, trying to go with the ebb and flow of our lives. I guess some of us switch between these strategies. Because my schedule changes weekly, monthly, and by semesters, I’ve been going with the ebb and flow. And finding how easy it is to ebb and how hard to flow. Yup, same story, different day. I know.

There’s endless advice out there about handling a creative life, some of it excellent. A lot boils down to actually practicing whatever commitment is right for you. 

Even when I’m not actively engaged in my creative routine, my consciousness seems to circle around the space where it could be. The type of paid work I do, and the difficulties that come with it, are what I have chosen and love. I choose not to have and not to do any number of things other people might really need. I don’t need them as much as I need that circled space, full or empty. I have let go of what I can do without in order to have what I need, and that’s not always a comfortable statement. And I often fail to take advantage of the space I’ve made.

As the late Andre Dubus (not Andre Dubus III)  once wrote in his fiction, “It was not as simple as money…it was as complex as the soul. But so often the body ruled,…and when it was overwhelmed, venom could spread through the soul…with money, one could soothe the body, give it rest.” When we have what we do need, and that includes financial stability,, it’s true the soul, body and creative life can be healthier, more whole. What price do we pay to have that? Some of us give up ideal creative space/time for the “good enough” space/time that we can afford to sustain. 

That requires choice, what life will consist of and what it will not, what is positive and not, what is bearable and not. No one has full choice; Life doesn’t work that way. So Choice about our own lives is precious, as daily life is precious in the knowledge of its ultimate ending. I believe in karma, the consequences of choices. We are all playing a role in the Fabric that binds us together. To take away Choice is to take away that ultimate right, that of fulfilling what we are as pieces of the Universe. 

What I create or don’t is my business and my responsibility. So much that happens in life cannot be and won’t be our Choice. To take away any of what is our Choice, is unconscionable. 



An intelligent-looking, attractive young woman goes upstairs in her home. She looks fine, but she crawls up on her hands and knees without even the energy for bodily rhythm.  Watching her feels like a terrible invasion of someone’s vulnerability, but she’s the filmmaker responsible for the scene, Jennifer Brea. Her documentary is called Unrest.

Shown at film festivals and on PBS stations, it’s available online and on Netflix.

Brea has ME, the worst illness you may not know about, Myalgic Encephalomyelitis. Perhaps triggered by a virus, it’s chronic: inflamed brain, immunodeficiency, impaired cognitive function, a screwed-up nervous system, a screwed-up every system. A dire inability to make physical effort, if it can be made at all, without disabling consequences. It’s not understood, and there’s no reliable treatment. Some don’t believe it’s real.

One of the photographed faces you can glimpse in the film is my cousin’s.

But this post is about Brea’s Creativity, not her illness. Her film is bold, even harsh, in its depiction of people with ME, while being very tender to them, and offering portraits of full human beings. The illness controls everything, but they are still far more than their ME. Although she cannot see this topic from the outside, being literally dragged down by it herself, her Vision as a film artist stands firm.

There is startling Creativity in how folks articulate the bizarre experience of losing their lives while still being alive to witness the loss, to paraphrase one person. It’s also in the ways they fill the empty space where their lives used to be. A short walk in nature becomes a pilgrimage, or floating in a pool becomes an act of poetry and freedom.

They speak and make posters for rallies and sing and write as they can, as acts of resistance and education, as well as of creativity. Brea sometimes treats ME almost as a realm of possibility, and that’s brave Art.  And while they do, they’re always afraid of losing even more, of collapsing in a public place as she does, of having their lives depend on medical personnel who don’t believe in or can’t care for their sick bodies.

Brea’s film mixes shocking information with moments of hope and certainly of love. It’s a balanced film meal: you may not want to swallow it, but you can digest it.

Unrest‘s ability to pull viewers into the experience of folks with ME may revolt you. It’s not easy. But your heart might open and shift along a new fault line, and make you glad it did. That’s the hard part of engaging with other people’s Creativity, or even with our own. But we do it, don’t we?

The image that doesn’t leave me is of a body that looks full of youth and sinewy strength, moving upstairs like a hundred-year-old tortoise. It doesn’t look right. It doesn’t make visual sense, like medieval peasants in movies who all have perfect white teeth. Even after many years, my cousin’s illness still surprises me, throws me, with its endless shifting surrealism. Some days the clock tells time, and some days it hangs limply over a branch in ways I struggle to process.  She’ll like the Dali metaphor, I think, because she’s a person who studied and loves and used to work in art. She may never visit a museum again, but I hope she will with all my heart.

Talk about being a CPT: Jennifer Brea got this film made, and I recommend it as one tough, compassionate act of Creativity.

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I will be writing posts again very soon, but for now, I will borrow words from the mighty Toni Morrison:

“This is precisely the time when artists go to work. There is no time for despair…no need for silence…We speak, we write, we do language. That is how civilizations heal.”

Here’s to creative ways to stand up, resist, express, support, interrogate ourselves, grow, and love.

Stay strong and together, CPT and CFT cousins everywhere. Peace.