Surgiversary Two

“Live in the layers, / not on the litter.”

Saturday marks the two-year anniversary of my brain surgery. 

In January 2021, I developed a hole in my head: a rare cerebrospinal fluid leak that doctors entered into my medical history, bluntly, as a “skull defect.” Fat, full tears of CSF dropped from my left nostril when I bent over. A stream of it released when I stood up.

Two surgeons patched my skull with human proteins and tiny tools that they passed up through my nose, into my left sphenoid sinus. After surgery, there were follow-up visits. Once a week, then once or twice a month; every six months, then once a year, until a few weeks ago, when my favorite surgeon, Seth, said I didn't need to come back.

"It looks good in there," he said, passing his thin, flexible endoscope up through one nostril, then the other.

"It's healed really well. I don't need to see you again."

I asked Seth about the nerve damage from the surgery. The numbness in my lip and palate; a patch of my left upper lip that feels like it’s not my own; how I can no longer cry out of my left eye. 

“I’m sorry,” Seth said. “I don’t like to see that.”

He explained how nerves get cut, stretched, and pushed around. They can recover, but at this point, he said, it was as good as it was likely to get.

“I’ll take it,” I told him. 

Just after the surgery, when pain still moved around my skull in mesmerizing waves, my friend Ryan FaceTimed me from Berlin. He was captivated by the idea of my one-eyed tears. He predicted that one-eyed tears would become my superpower. He conjured my drag persona: one side of my face a fierce, smokey cat-eye, the other a tragic mascara-soaked mess.

Ryan died this summer, and I lived. I told Seth that I've learned to think of the numbness and right-eye tears as signs of my good fortune. They tell me I am alive, that I am good, that for all the powerful bad in the world there is powerful good, and that right now, I am alright.

In Seth’s office, newly pronounced as healed.

“Nothing else can ever mean a thing”

A lot has happened since I last wrote here, a year ago. It’s been a year of things lost; things falling apart. 

My left knee crumpled on February 24, 2022, the result of a stress fracture to a corroded joint. I iced my knee on my bed in a Miami hotel room, watching Putin invade Ukraine on CNN; all the filaments of my Ukrainianess stirring to attention and alignment.

So many people died. Ryan, then Jaimie. Bucha, Mariupol, Chernihiv. My mother nearly died, too. 

I got a new knee. My relationship ended. I lost the house I thought would be my home; the cabbages and beets I’d planted for a late fall harvest. A hurricane passed through Florida, and my mother lost her home, too: the sapphire kidney-pool; the tropical plants in the turquoise globes; her little library with its walls wrapped in white bookshelves. I mean, the house is still there, but the home is gone.

I came off medical leave, and came back to work in the middle of the longest part-time faculty strike in U.S. history. The social skin of the school was stripped away. I had always known about the cruelty beneath, but this winter I lost whatever device it was that had previously kept me from despairing of it.

And yet. But still. I am alive. 

My brain is patched with mesh and human proteins. My left leg is titanium and silicone; sinew and muscle. My life has been saved several times over by tiny robot tools and skilled surgeons. A physical therapist got me to understand what had eluded me: pain, like fear, is not something to avoid. It’s a part of getting stronger. 

I am not alone. Friends came to help when I needed it. A van came to carry my things away out of one home, and back up the stairs into my apartment. A friend made my apartment lovelier. Friends invited me into their homes. Friends came to my table for dinner. I made new friends, luminous and loving. 

I helped my mother move to an elder care home in Canada, on the northern shore of Lake Ontario. Each time we speak she sounds more lively and pointed, like herself. She dines at 4:30 p.m. with a group of women she calls the “Early, Early”. She has been recruited for committee service.

One of the many gifts that she gave me was Finn, her exceptionally agreeable pandemic dog, for whom she could no longer care. I know it makes me sound like everybody else when I say it, but I love this animal unreservedly, and he loves me, and in the words of Ira Gershwin, “nothing else can ever mean a thing.”

Finn and I have driven to visit my mother three times, now. It takes a whole day to get there, and when we arrive we are cherished.

Finn in Ontario, embracing the mess.

“We have no fear; nor should anyone in the world have it.”

Finn and I can walk 10,000 steps a day, now. Sometimes we walk so far, I can see the future. 

On December 21, the longest and darkest night of the year, my mother, Finn, and I watched Volodymyr Zelenskyy address the United States Congress. 

He said, “Ukraine is alive and kicking . . . We defeated Russia in the battle for the minds of the world. We have no fear; nor should anyone in the world have it.”

Then, he asked for the things Ukraine needs. 

“Your money is not charity,” he said. “It’s an investment.”

Whatever happened next, I thought, will define the kind of world in which we will live. I knew this to pertain to Ukraine and the defense of democratic institutions; about climate action; about how I would deal with my losses; about how I would go back to work, and what choices I would make about work, health, and relationships.

It’s very hard for people to think about the future now. But restoring the future—a non-catastrophic future, a future worth living—is the investment we all must make.

The more we can stretch out a moment like a winter solstice (in the longest, darkest night we are thinking about longer, brighter days); the more we can stretch ourselves in both directions—past and future; and the better we can make sense of the present.

Proof of life

I’ve started and re-started this newsletter with big promises. Once, renegotiating my relationship to music (2021). Twice, solving for music’s power in the climate emergency (2022). This third time I won’t add anything more, except to say that topics one and two are still very much going concerns.

I plan to post shorter pieces, more often. My plan is to keep using the two media I know best—music, and writing—to name the truth. Each is more exacting than the next in the demands they make: that you become the person who could write the book, that you become the person who could make the sound that no one else could make.

This weekend, though, I am hosting a surgiversary party. There will be a limited number of musical selections, there will be a brief reading of something, there will be foods starting with the letters “br” (brisket, brownies, brussels sprouts, not brains) and a signature cocktail mimicking the CSF fluid I carried to the Emergency Department in a mini Bonne Maman jam jar. 

I throw this party as a gift. It is proof of life, and an act of love.

There will be toasts, I hope, and then I will cry out of my one good eye. 

I don’t know how to put this any differently. We are alive. We are well. We are free. We are loved. We are not done.

There is so much work to do. Let’s begin.

Last word to Stanley Kunitz

The last word goes to Stanley Kunitz, who loved his garden. I imagine he liked dogs, too. Maybe I’m projecting. It’s okay; I think we might have gotten along.

In my darkest night,
when the moon was covered
and I roamed through wreckage,
a nimbus-clouded voice
directed me:
“Live in the layers,
not on the litter.”
Though I lack the art
to decipher it,
no doubt the next chapter
in my book of transformations
is already written.
I am not done with my changes.

—Stanley Kunitz, from "The Layers," in The Collected Poems of Stanley Kunitz (1978)

You may read the full poem here.