Influences, poetry, and an update

Can I make a humble recommendation? If you’re going to get sick, I’d suggest not doing so during a global pandemic. It may really cramp your style, keeping you further isolated from having a wild gaggle of girlfriends to hang with in hospital rooms or even space to make new cancer friends to swap “get this shit!” stories with. 

On days like today, I wish I had more cancer friends outside of Instagram followers and virtual lymphomie’s I’ve made from around the world. The bright side is my desire to see a reflection of my experiences mirrored back to me sent me on a quest, very early on in this journey, to find writers, poets, artists, athletes, and other creatives who appealed to my senses and sensibilities that I could ‘befriend’; who could put words and images to the quirky, painful, terrifying, and transcendent waves I was riding. 

I am been moved, educated, inspired, brought to tears, and grown by the many humans I’ve been guided by over the past few years. Caitlin Doughty, Sunita Puri, Matt Haig, Tricia Hersey, Adrienne Maree Brown, Jack Kornfield, Mary Oliver, Simran Jeet Singh, Richard Rohr, Sue Monk Kidd, Audre Lorde, Caroline Myss, and my beloved Kate Bowler of whose podcast is the only one (besides Maintenance Phase) that I listen to the day it comes out. There are so many more. There are also the many videos I get from a core set of girlfriends weekly or sometimes daily who keep me grounded in the routines of life and who I can process big days and small annoyances with. Today, I want to highlight two of my biggest influences, prose, and poetry, whose work keeps me stitched together. Whose work makes me feel seen and understood. 

Within a month of diagnosis, I came across Suleika Jaouad and her stunning book Between Two Kingdoms about her journey from young, thriving creative living in Paris to sick, struggling creative enduring a bone marrow transplant and then traveling the US on a road trip to meet with the strangers she connected with during that time. This isn’t non-fiction for a cancer patient, although our stories did and continue to feel like they’re running on parallel lines. It’s a story about losing a grip on the security of how you felt life should be, examining reality as it changes, and the relationships we build and blunder along the way. She’s since had a relapse and another bone marrow transplant just months before my own which she touches on along with many other beautiful themes on the intersection of love and pain in her twice-weekly newsletter, The Isolation Journals. For a small donation of $5/month, there is a weekly community meeting called The Hatch, where people from all over the world Zoom in to work on creative projects together. I hang on to every word she writes. It’s beautiful, humble, raw, funny writing that is often paired with a writing prompt from a friend or fellow artist, introducing me to even more creative do-gooders. My heart breaks for her relapse and for getting the news that she will likely be on chemo for life. It helps me examine my what-ifs, deepening my gratitude for all I have now. 

I’m not sure how I stumbled across Andrea Gibson, the fiery, funny, prolific, queer poet, and activist who, like Suleika, writes with such clarity of self that I cannot look away. We had tickets to see them live on tour, a tour they were days from kicking off when they got the news that they also relapsed with breast cancer, canceling the whole shebang. Since then, something incredible has happened. They’ve gotten…better. Somehow more powerful. Their writing is more of everything I loved about them from the start. More raw, more hilarious, more fantastical, more sensory. Want to see all this on display? Check them out on YouTube or Instagram. The squirrel-related content is my fav. 

In my own world, this past week, there have been several symptoms that, while I’m (almost fully) confident are not signs cancer has returned and are likely tied to the transplant, have felt debilitating and scary. Using the ubiquitous advice of my many stranger-friends, I’ve had many reps in practicing allowing. Allowing my body to feel what it is feeling and my mind to think what it wants to think while remaining curiously detached - watching, listening, sitting, or laying in meditation, breathing into the pain. My feet are usually planted on the ground; this is my work. Today, emotions unexpectedly came pouring out of me. I need help. I need a hug. I searched the house for Evan. He met me on the stairs, and we held each other. “I don’t want this to be my last Christmas,” I said through big tears, a heaving chest. We breathed together until the well dried up and my feet were on the ground again. 

Back in my zen den, my private sanctuary, warm, full of books and candles, art supplies, and a cozy fireplace, I opened my computer to see an email from Andrea. The subject line read: A poem I wrote in the middle of the night. Here it is: 

One of the best things I did for myself this year 

was decide to never think this thought: 

When the cancer goes away, I’ll start my life.  

This is my life. I’m not waiting 

for anything to be different to live.

I’m not waiting to feel great, to be great.

Everyday I lift weights heavier than my heart 

so I can say,  Hello my name is Ready, 

to whatever comes my way.  

Break my spirit and I’ll have two spirits. 

Break my spirit again, and I’ll have four.  

I’m not as alive as I was before 

I was diagnosed. I’m more alive. 

I’m as bald as I was as a baby, 

which is to say–– everyday I’m being 

born, but the other night I died 

laughing while rolling around with Meg. 

I said, Run your fingers through my hair.  

Do you know we can cry and sing 

at the top of our lungs at the same time?

Do you know I’ve finally learned how

to run for my life and not against it?

The key is to never warm up to the idea

of a promised future. No one can do that

without giving Today the cold shoulder. 

Listen to me writers—every great poem 

has been written by the dead with the ink 

of the living. Every great book plagiarized 

infinity. Don’t worry about taking anything 

this world needs with you to the other side. 

When you go, every unwritten word

will find a home in someone’s else’s pen. 

I know this so entirely it now feels strange 

to sign anything I write with my name. 

I don’t want to own beauty. Don’t want to

occupy language. Don’t want to invade 

the country of awe and claim it as my own. 

All of it is ours, and by ours I mean everyone

who ever was, and will ever be. Dear everyone 

who ever was, and will ever be—Don’t wait 

for anything to be different to live.

When I was diagnosed, Evan and I often talked about how we would live through this, whatever that meant. We didn’t want to numb out to the experience. We wanted to be awake, to see this as another adventure, to look for ways to expand into ourselves. The timing of my diagnosis, as weird as it may be, couldn’t have been better -  pandemic and all. In setting my intentions at the start of 2021, I could not imagine anything specific that I hoped for. All I could think was that the theme would be Sukha, a Sanskrit word meaning ease, pleasure, and joy. The feeling of not wanting to accomplish more was foreign to me, disorienting. “What if I’m done growing outward? What does it mean if I don’t want anything more?” I asked Evan in a panicked search for the wisdom only the king of innate chill knowledge has (that’s my partner! YIPPIE!). “What if,” the wise man began, “instead of growing outward, this is the year to grow inward?” 

I suppose it was. And is. 

The day before I drew a Phoenix born from fire surrounding my weekly mantra card. Returning from grabbing the paper, this same image is welcoming me on the doorstep. Isn’t life fun?!

This is the second half of life’s juicy bits. 2021 became the year of going inward. 2022 catapulted that deep dive even deeper. Now, I am as wide as I am deep, a crater of stardust, of mystery, of the whole range of humanity. As Andrea encapsulated perfectly, I will not allow myself to warm up to the idea of a promised future. When I’m floundering, when I’m too afraid or in pain, scared to face the unpromising future of 5 years or 5 minutes from now, I search the house for a hug. I go back to my stranger creatives. I do it to remind myself that I’m not alone. That I’m going to be okay. We’re going to be okay. Awe and pain are not our own. 

I will not wait for anything to be different to live. Thank you, teachers.