What I Learned From My Brain Adventure

When I wrote my last blog post about death, I didn’t know I’d be confronting my own mortality so starkly, so soon.

At the end of July I went to my first in-person writing retreat since this pandemic started. I sat with my classmates around our host’s living room while we shared our writing, and I passed out.

When I returned to consciousness a couple minutes later, I had a blissful sensation, like waves cascading throughout my entire body. I’d had that sensation before, when doing yogic breath work or having a coughing fit, although I’d never passed out because of it. I thought it was a mystical state. I wondered if it was my kundalini rising, but when I opened my eyes again, my classmates surrounded me looking worried.

Laura, my teacher, said, “Sweetie, I’m afraid you’ve had a seizure.”

A seizure? No, I was in spiritual bliss, I was a fountain of—

“We need you to call your husband right now and then one of us will drive you to the ER.”

What? No, I want to stay at the retreat. I worked so hard to save up for this. My husband Dan is taking care of our daughter all weekend. I am here to write.

Their pitiful stares broke through my denial, “Ok, I better go get checked out.”

Hours went by in the ER waiting room. Blood work, Covid test, and a brain scan showing “an event.” I had to stay overnight. I had an MRI the next day, and a sweet, young neurosurgeon came by and explained to me, “You have a cavernoma, a malformation of veins and arteries in the brain that is bleeding, and likely has bled many times before. I am surprised this is your first seizure.”

Cavernoma: the bullet I dodged

I said, “First time passing out. Not the first time feeling that amazing bliss. I thought I was having a mystical--

“We can do surgery on Tuesday." The doctor smiled under his mask, "Don’t worry, we’ll make sure the scar is hidden under your hair.”

Scars on my head were the least of my worries. What if I died and left my child without a mom and my husband without a wife? What if the surgery damaged my brain? What if I lost my ability to do my work as a healer, writer, mom?

My mind was spinning. I thought this summer was going to be about working toward the publication of my novel, but instead I was faced with handing myself over to a (very nice) neurosurgeon and hoping I’d come out okay. The alternative was no good: take anti-seizure medications, be forbidden from driving for life, and wait for brain damage or death to arrive anyway.

Art by Kirsten Bennet

I had never felt the effects of hundreds of people praying for me--it is glorious. “Thoughts and prayers” are an inadequate response when what we need is good public policies, as in the case of gun violence, but prayers are real and their effects powerful. I absolutely plan to continue to pray for everyone I love, for our Earth home, for anyone who is going through a hard time, for anyone who needs their heart softened and their mind opened… Gratitude that fills me when I think of all the people who prayed for me and who showed up to help my family with meals, playdates for Sophia, and donations that helped us get by with my significant loss of income. I am convinced that community is a big part of the answer to all of our problems.

Recovery happened in many stages. One day in the ICU and four more in the hospital. Lots of sleeping and eating soup lovingly made by friends. Reading slow, boring books, resting my eyes and my ears, because all my senses were exacerbated. Everything was too bright and too loud, there was no way I could watch anything on a screen.

When I came home, I had to use a walker to move around. I had to shower while sitting on a stool. I was unsteady, afraid to fall, and watching for brain damage or additional seizures. Energy returned to me slowly, steadily.

The best thing was being able to get off the anti-seizure medication, although withdrawal was gnarly: feeling like two mice were racing through the labyrinth of my brain. Like a tiny woodsman was sawing through my cranium, stabbing my soft gray matter with a miniature pickaxe.

Photo caption: Art by Katt Splat and Kate McDowell

Five months later I’m still healing. My head itches like crazy around the incision. Numbness from having had my nerves cut has receded, and swelling has gone down. I can feel the head of every screw holding down the three titanium plates on my skull.

The most powerful, maybe permanent, side effect is that I am still extremely sensitive to the emotional energy of other people. Yesterday I finally went shopping for some gifts for Sophia’s teachers, and I felt engulfed in other people's energy. It’s like I’m a radio antenna picking up other people’s sadness, anger and fear.

I am quick to express my own emotions. I am (still) one of the happiest people I know, not because I don’t feel hard things, but because I move through them without resistance, and they resolve quickly. This coping strategy is what allows me to work deeply with trauma survivors without being dragged by the undertow.

My empathy is available for clients and friends, one-on-one or in small circles, but in my new state post-brain surgery, I can only tolerate crowds for very short periods. I cannot stand the tsunami of strangers' emotions that I feel powerless to relieve.

This is why I don’t know if it will ever be sustainable for me to do on-the-street activism again. Reminded of Joanna Macy's words, I don’t want to block or fight. I want to build and be. My life is guiding me to apply all my life force to healing and collectively creating.

As a climate activist, what I’ve wanted is for everyone to stop what they’re doing and to devote ourselves to mitigating the climate crisis. That is to say, I’ve wanted to change others.

Sometimes I’ve managed. I am proud of what we did during the Global Climate Strike of 2019 because it broke through denial in the media and governments about our delirium of planetary destruction. But human behavior still hasn’t changed close to enough.

Instead of being tormented by this, I am in acceptance. I accept that there will be a lot of avoidable suffering in the world. There already is a lot of avoidable suffering in the world. I accept what is, and I radically re-commit myself to alleviating suffering in my own sphere of influence.

If I had a manifesto, this is what it would say:

I wholeheartedly commit to

-Live simply and frugally, while staying engaged with the world.

-Interrupt oppression and violence anytime I witness it, even in myself.

-Interact lovingly, generously, respectfully with others and with the natural and the spirit world.

-Move through—rather than surrender to—fear, anger and sadness without harming myself or others. Keep up to date with my grieving so I can inhabit the present moment with flexibility and openness.

-Rejoice in being free from what I don’t need and find happiness in the small things.

What's on your manifesto, dear friends?