Tribe of Zero
New podcast w/James McMullan, finding a tribe, lots of links, the pencil stirs, & more
I attended a support group meeting a few nights ago. First time I ever did that. It was for people with stage zero chronic lymphocytic leukemia (that is, people who have been diagnosed with CLL but haven’t progressed to the point of needing treatment).
I didn’t get too much out of the hourlong Zoom, for reasons I’ll get into; the leaders spent a lot of time on procedural issues, then went over some material that I thought for sure every patient would have already heard from their oncologist (like I did). From there, it was a lot of practical advice, but the average age seemed a dozen years older than me, and most of the advice was less relevant to me (it wouldn’t really be possible for me to exercise more).
The part that did help was hearing people talk about how many years it had been since they were diagnosed, sans progression. Some were approaching 20 years, and while they credited various practices for which there’s no clinical data, I was heartened by the notion that I might go a long time before I progress (or deteriorate, depending on how you look at it).
But I think I was hoping they’d talk less about the practical and more about the existential.
I’ve written about this before, but my favorable diagnosis in July 2021 — The Best Bad News — was preceded by a 10-day period in which I figured I had 6 months left to live. That interval between my primary care doc saying, "You need to make an appointment with a hematologist [hahaha actually an oncologist]" and the actual appointment consisted of my deep dive into mortality, the summing-up of my life & legacy (such as it is), writing my obit and making my preparations to die. At the time, I was surprised by how reconciled I was to that notion.
And then I was told that I may have decades and decades (I had just turned 50, so not too many decades) ahead of me.
It wasn’t quite Dostoevski’s mock execution, but the whiplash was profound, the relief tempered by the knowledge of those preceding 10 days.
And when I recently I read this piece about the benefits of thinking-through-dying, it occurred to me that I’ve never really reconciled that thrownness-unto-death with what came after. In reality, I went back to much of my life — with some tweaks — but the (imagined) closing bell still echoes on the periphery of my hearing. It’s like some part of me is still on the ledge, not that I’ve ever been good at looking down.
So what I hoped for from the support group was a little more of that: how did people go back to living not just with this open-ended diagnosis, but with the knowledge of who they were in the moments before the lab results. I can understand why no one talked about it, esp. the people who are more than a decade out without progression. They’re much more about what to do going forward.
It probably means I should find a therapist, although I’m not sure what symptom I’d describe: I don’t think “anxiety unto death” quite fits the “anxiety & general panic” in my insurance company’s treatment directory.
But all of that said (and oversaid), there was something I got out of the group besides the comfort in how long some people have stayed at stage zero. It was our shared language. Just hearing people talking numbers and tests, and our common CLL vernacular and protocols: there’s no one I can talk with for whom the language has become second nature, with whom there’s no need to explain things (outside of semiannual visits to the oncologist).
When I mention my diagnosis to people, my shorthand is so abbreviated that they can barely process what I’m telling them, but this group lives with it, and that familiarity is a tribal bond.
All of which gets me to my point this week. My life has been largely tribeless (despite being a Member Of The Tribe). My career-self (let’s be honest, it’s not a day job) is irreconcilable with my podcast-self, and while those are largely what define my life, they’re so esoteric as to have virtually no overlap. Pals I can commiserate with about running this sort of trade association can’t really grok what the pod-life is like, while my arts pals have even less comprehension of what my work really entails.
But now there’s a tribe I belong to, one that underlies work, podcast, art-making, and all the other trappings that go to make up a life. We’re united by blood: specifically, our crappy lymphocytes.
I don’t know if I’ll go back to the support group (it meets bimonthly), but I’m awfully glad it’s there.
This week, I posted Episode 526 of The Virtual Memories Show, featuring legendary artist and illustrator James McMullan. We talk about James’ new book of gouache drawings, HELLO WORLD: The Body Speaks in the Drawings of Men (Pointed Leaf Press), his three-plus decades of posters for Lincoln Center Theater, the importance of the human figure in his art, how drawing with color opened a more expressive channel for him, and why Hello World is his most personal project (even moreso than his memoir). We get into the intersection of illustration & fine art and whether he resented being overlooked by the museum set, how his work for Lincoln Center Theater helped define NYC theater (despite his being neither “a New York guy” nor a hardcore theater-goer), the ways his literary reading feeds his art and vice versa, and how he invested $11,000 in a supply of his favorite paper a dozen years ago and how it feels to reach the last of it. Plus, we discuss his High Focus Drawing approach, the gestalt between model and artist, how it felt to be a ‘sissy kid’ who found power in art, why he shows feet when everyone else is focused on the intimacy of close-up faces, and a lot more. Give it a listen! And go check out HELLO WORLD!
Last week, I posted Episode 525 of The Virtual Memories Show, featuring cartoonist Paul B. Rainey as we talk about his fantastic new graphic novel, Why Don’t You Love Me? (Drawn & Quarterly), and how he crafted a deeply human story out of a deeply weird premise, taking the reader from bleak, black humor to the most heartfelt moment of connection. We get into the challenges of serializing this story over 6-plus years, the ways in which science fiction can help us reframe our day-to-day lives and midlife meltdowns, and the ways Why Don’t You Love Me? explores what it’s like to look at one’s life and ask, “How did I get here?” We also talk about the perils of writing a story with such a great twist that it’s difficult to talk about (spoiler alert!), the amazing experience of being published by D&Q after years of self-publishing his comics, the amazing experience of getting a blurb from Neil Gaiman, why he’s never watched Groundhog Day, and a lot more! Give it a listen! And go read Why Don’t You Love Me?
Links & Such
Great tribute to the late cartoonist Michael Dougan by John Kelly, et al.
Warren Ellis has a lovely writeup of Dennis Potter’s last interview, which I need to watch sometime.
As someone who finds the whole True Crime thing salacious, I appreciated this critique of that . . . genre?, from John J. Lennon, a writer in prison for murder.
It’s not easy being green.
On the Road - by Jack Kerouac
I Always Think It’s Forever - by Timothy Goodman
Nothing Stays Put: The Life and Poetry of Amy Clampitt - by Willard Spiegelman
I continued to spiral into making virtually no art, until yesterday when I finally started drawing a few more faces for my “authors I read in 2022” project. I only made two of them, and one needs to be erased and redrawn, lest Ruth Scurr curse my name unto eternity, but at least I put lines on paper. I didn’t scan anything and I don’t know when I’ll get to doing that again. The mild winter means the crocuses are starting to creep up and some trees are beginning to bud, and maybe that’ll ignite something in me, too. (Artistically, that is; I’m a little too old for other rites of spring.) You should go to the Flickr album of all the art I’ve made & find something you like.
Sound Body, Fractured Mind
I managed another 5-day cycle of weights & yoga, Friday-Tuesday. I got some walks in with my pals, too, and went on a mini-hike with Amy & our dog-boy Bendico. My neck/shoulders have been a little stiff/weird some days, so I’ve been doing neckstands after yoga some days. (There is no good angle from which to shoot one of these, so I thought I’d share an embarrassing one.) I also started adding a set of pushups to the end of my first-thing-in-the-morning stretch-sun salutation-plank routine, so yay me.
Until Next Week
Thanks for reading this far! I’ll be back next with a new podcast, fun links, maybe some art, & maybe a little profundity or something.
Will you say in our lovers’ story? If you stay, you won’t be sorry,