Drop all the narratives

A strange thought for a writer, but a useful thought for someone confronting cancer

The most organized corner of my office (fiction, alphabetically by author)

Part One

Warped reflections of the Soul

Saturday September 21, 2024

Last night, amidst Theo’s many stories from school, she mentioned that one day in class they were discussing the effects of the immediate environment on people and vice versa, and they looked at photos of different rooms, to see if they could guess what kind of person lived in those rooms. But that’s assuming that a person’s bedroom reflects who they are; it assumes that decorating their room to reflect their soul is a priority for them. Or that they can afford to create the room they want. What about people like me, who have just never had the energy or time for making sure my environment reflects something true about me?

I am a terrible homemaker. It’s not that I don’t want a home that reflects who I am. I do! I admire the homes of people who have carefully curated their home as if it were a museum of their soul. People who have spent hours or days (and often a great deal of money) searching for just the right mahogany desk or library ladder or antiques from another country.

When I visit relatives and friends who have beautifully framed photos of the people they care about all over their home, I am envious. I would love to be surrounded by photos of my people. But that would mean going through hundreds of thousands of photographs, picking the ones I like the most, finding money to pay to have them printed, and then all the mounting and framing, which I don’t have the first idea how to do. The whole task of putting photographs up feels completely overwhelming, in terms of time, skills, and money. Especially when work and family are greater priorities, always.

Then there’s the fact that we have never lived anywhere permanent, making any efforts at personalizing each apartment or house feel pointless, since we’ll just have to take everything down again in two or three or four years. Tim and I have never fully decorated anywhere we have lived. We have only managed to hang up paintings by the artists in our families when we had a staff member to help. Even then, it took us more than a year to hang up our paintings in Tashkent. There were always other things calling us.

Now, of course, decorating feels more pointless than ever, almost like creating a memorial for myself.

And yet. I would love to get my one Uzbek painting—the only painting I have ever bought—on my wall. I would love to have a sofa in our living room. I would love to be surrounded by photos of Theo and Tim and everyone else I love. So often, I look around my office and think, yes, I would be happier if it were more organized. If I could find the painting I want on my wall. And then I think, I could spend the day organizing or I could work. And work always wins, now more than ever.

This is all to say, please draw no conclusions about my soul from the state of our house.

Part Two

The Cancer Update

I keep thinking about the character Dana in the L Word, who dies of cancer (I’m sorry if this is a spoiler for anyone, but it has been out for decades now, so I think I’m safe). She behaved badly. She raged. She alienated her friends. She did not fade from life quietly, with grace and peace. It is a relief to me to see such depictions of people fighting cancer. Having cancer doesn’t automatically turn people into angels, who accept their death with dignity. Often quite the reverse is true. People with cancer are still, ultimately, people. I am not one of the angelic, Zenlike cancer patients, although I wish I were a little more like them. I try. But I am never going to dance gracefully off the stage.

I had a PET scan last Friday. A spot of cancer in my bowels was illuminated, but one that is not yet large enough to qualify me for a trial. My tumor marker is going up every week, and I have ascites in my abdomen, meaning both of my oncologists are sure the cancer has returned. But neither seems to think there is urgency in starting chemo—at least not unless I suddenly have a bowel blockage. Thus for now, we continue waiting. Strange to know this is growing in me, to be hoping it will grow large enough to qualify me for a trial. I have another scan in four weeks.

After spending all day in the hospital, we stayed in Montpellier to pick Theo up at school. Upon leaving the hospital, my energy levels crashed. I am so adrenalized before each appointment, so anxious and apprehensive and steeling myself for the latest news, that when it’s all over for the day I feel I have just been dropped from a plane and struggling to peel myself off the sidewalk.

Part Three

A taste of Real Life

I write this on a train to Bordeaux to meet my friend Elizabeth Cohen, brilliant poet and teacher, and a group of writers she has brought to France for a retreat. Check her out here:

https://www.bookcoachmagick.com/

She invited me to give a workshop to her writers, and patiently waited for me to find out the results of my latest scan. I was delighted for the delay in treatment largely so that I can go see Elizabeth and her writers. It will give me a chance to fully inhabit my writer self in the company of other writers. A gift.

From Bordeaux I hop on another train to Paris, as I will be speaking Saturday afternoon on a panel of authors at the regional FAWCO conference. For those of you not familiar with FAWCO, here is a paragraph from the organization’s website, https://www.fawco.org/about:

“Founded in 1931, FAWCO is an international network of independent volunteer clubs and associations comprising 59 member Clubs in 29 countries worldwide. FAWCO serves as a resource and a voice for its members; seeks to improve the lives of women and girls worldwide, especially in the areas of human rights, health, education and the environment; advocates for the rights of US citizens overseas; contributes to the global community through its Teams and The FAWCO Foundation, which provides Development Grants and Education Awards. The organization is a global women’s NGO (non-governmental organization), and since 1997, FAWCO has held special consultative status with the UN Economic and Social Council.”

Impressive, no? I am thrilled to have been invited to speak at their regional conference this weekend. Another reason to be happy for the delay in treatment. A chance to connect with other writers and women from all walks of life, to make friends, to be something other than a cancer patient.

The only downside is that I will miss 49 hours with my daughter. Not that I am counting. This past weekend I treasured every moment with her. We spent hours and hours talking about books and school and theatre and friends. She always offers interesting insight on the books we read. Saturday we had a study hall together in my office. I cleared a desk for her so she could work alongside me all day. We took breaks for music and conversation. In the evening, when I was getting ready for bed, she brought her schoolbooks into my bedroom and sat on the floor near me so that we could keep talking while she worked.

Sunday night, she and I sat on the step in the kitchen talking while Tim washed up, so we could all be together. At some point my cancer came up, perhaps when we were debating how to spend her school holidays. I couldn’t answer her questions about where we might be, traveling or at home. I apologized for our inability to plan anything. “It’s my fault,” I said. “Strange to look in the mirror and see me looking like myself, to see my body looking healthy, and to know what is growing in me. Like Satan’s child.”

“Like Satan,” T corrected. “You can’t die,” she added, as she has often done.

“I am doing my best,” I said. “But the chance is there.” Her eyes filled with tears.

“I want you to see me grow up and have a career as an actor and see me fall in love and meet my children….”

“I know, I said. I want the same thing. And I will do everything in my power to stay around.”

It is hard to know that after spending so much energy trying to protect or heal her from pain I could end up causing her the greatest pain she has known.

Back in Bolivia, when she actually chose to dress like me

This morning I did an online yoga class with Elena Brower at glo.com. I have been doing yoga with glo.com nearly every day since 2012 (when it was yogaglo.com), so that now I suffer from the illusion that many of the teachers are my friends. I know their quirks, their favorite moves, their senses of humor (if they have one). I know who leans more spiritual and who leans more sporty. I don’t know how I would start the day without them. (I promise I am not paid for this enthusiasm). Back to Elena. She ended class today by saying, “Drop all the narratives about what is possible and let yourself flow.”

These words are my guiding principle today. This week. This life. I am dropping all the narratives about what is possible, leaving room for anything to be possible. Anything at all.