Last week I wrote about doing something unexpected — returning to ballet class. Today I want to talk about another unexpected thing I did recently, namely join an online support group. This is a curve ball given my general temperament and also given where I am, almost a year along in my “cancer journey.”
The support group is, in a phrase a lot: alternately naive, repetitive, misinformed, misspelled, speculative, clueless, conspiratorial, and cringe. The storytelling is appalling; writers bury the lede, backtrack, and contradict themselves. Abbreviated medical jargon renders posts incomprehensible to the lay reader. It is terrible and it is beautiful and I can’t get enough.
This week I’ve been reminded several ways from Sunday that cancer is a long game, and the online support group, in all its chaos and faulty logic, is the chaos of cancer made manifest. One minute you’re on solid ground, thumbs up and feeling good. The next you are balancing on a Bosu, mainlining Immodium and Googling “how long Herceptin runny nose.” Smooth narrative arcs are the privilege of the well.
Don’t worry, I am fine. My long game remains mundane. But a rash of recurrences and one death in my larger circle of affinity have set me on my heels. I thought I was moving away from cancer, but worry has wormed its way back under my scars as my six months scans loom.
A note appears in my chart: “Patient appears frustrated with slow process of treatment and healing.”
And it’s true. When you’re dealing with breast cancer, there’s a lot to be frustrated about. Entrenched and unforgivable disparities in morbidity and mortality rates between white people and communities of color. Inequitable access to basic preventative heath. Extortionate insurers. Environmental carcinogens. Sexist lab techs and assembly-line surgeons. The humbling aesthetics of compression bras and lymphedema sleeves. In this instance, it’s the intractable swelling and scarring of my left breast. And the ever-present menace lurking, so quiet, just under the waterline of your body, waiting to make itself (re)known.
Today was the first day of water rowing season for my crew team of breast cancer survivors. I have been a bad team member all winter, unable to get it together to make it to indoor group workouts, barely on top of the pre-season prep. Honestly, I wasn’t sure I was going to keep it up. Rowing is prohibitively expensive long term, and the training schedule conflicts with another dance class I’d like to take — one where no one knows I have cancer. Maybe this rowing thing has served its purpose, I thought, last week. But then this week came around and brought home the psychological importance of staying present in this space even if it is awkward, inconvenient, and unaffordable.
It was freezing cold, but we went out in the boat this morning — a bunch of people all with different experiences of cancer and of rowing — and even as we fumbled with the oarlocks and fell in and out of pace it was restorative and good to share space with these kind, effortful people, each on their own convoluted journey.
It is important, to me, to keep reinforcing the shared experience of this all-too human condition, both online and on the water. It seems like the best way to figure out how to integrate the self who’s spent the last year trapped in cancerland with the self who came before, and set her on course for the future, however long that might be.
I’ve been pretty busy this week, and I will be again in the coming days, in part because I’m trying to get my material together to apply to a writers residency. So I’m foregoing a Q & A this month. Instead, please accept these alternative media suggestions!
Read: In keeping with the ballet theme, I followed up Don’t Think, Dear with Meg Howrey’s gorgeous novel They’re Going to Love You. Set in New York during the AIDS crisis, and immersed in a fictive world of dance and art, I loved for its exploration of the complicated ache of ambition and its furious, infuriating protagonist.
Listen: Magical Nora O’Connor has a beautiful new album. OK it came out in October but the first time she played out I was sick, and the second time I was out of town. I finally got to see her do some of the songs from My Heart at an intimate house concert in Evanston last week and they are so so good. Nora is best known for her work with the Flat Five and as support for Neko Case, Mavis Staples, The Decemberists, and scads of others. But this lush solo album of country/folk/pop charm is her chance to shine.
Watch: Last week I also went to see The Reverend, a documentary about Reverend Vince Anderson, a fixture on the New York music scene where, with his band The Love Choir, he has been hosting a roof-raising dirty gospel revival meeting every week for twenty years. He’s also my friend Millicent’s husband. The movie is rowdy and great and will make you want to be a better person, while also inspiring you to start wearing caftans. Look for it coming to a streaming service near you!
I’m going to end today with a request not for money but for engagement. If you like what you’re reading here, please consider leaving a comment or sharing my work with friends, colleagues, or social media strangers. As Twitter implodes and Substack Notes works to find its groove it’s become suddenly a lot harder to get any traction — and the feedback I get from readers is as valuable to me as cold hard cash.
Hi Martha, I was moved to quit lurking by your request for feedback, because your posts have given me a lot of pleasure and food for thought—Bell, Whistle is so much more than a cancer chronicle. I always look forward to seeing it pop up in my email, and I read your essays for the privilege of getting to know you as well as for the exceptional writing. Best of luck with your application for the writers' residency. And congratulations! All best to you and your husband! —Kate
PS: I also appreciated the soup recipe. ;)
Good work, Martha. Sharing your writing with some friends...