Prompt 280. The Stories that Save Us

& the memoirist Margo Steines on post-traumatic growth

Hi friend,

Years ago, I read the essay “The Median is Not the Message” by the evolutionary biologist Stephen Jay Gould. In it, he writes about grappling with the prognosis of abdominal mesothelioma, a rare and serious cancer. He asked his oncologist whether there was medical literature on his particular disease, and she gently advised him against looking into it. Like any good patient, he ignored her instructions and dug in. What he found was rather dismal: at the time, the median mortality was eight months from diagnosis.

It’s the kind of statistic that strikes fear in the heart of any patient, and he immediately realized that, for most people in his position, his doctor’s instructions were a kindness. But Gould’s background gave him a more nuanced understanding of statistics than most of us. As he writes, “All evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions.”

So instead of focusing on the median, Gould looked into the variation, which on the survival end of the spectrum had what they call a “long tail,” meaning there were people who had outlived that median by years. And since he was on an experimental treatment protocol—meaning it wasn’t yet factored into the current statistics—it was possible he was part of a new cohort whose survival could be much longer. As it turned out, he was right. He lived for another seventeen years, and when he died, it was not from mesothelioma but an unrelated illness.

I took comfort in this during my first bout with leukemia. When the statistics pointed to a 35% chance of surviving longer than five years, I could soothe myself by saying that an aggregate of data is not a crystal ball. And yet it’s different this second go-round. Relapsing after a decade is so incredibly rare that there isn’t a statistical median or mean. There’s simply not a large enough sample size. As my oncologist often says, “Statistics do not apply to you. We’re flying by the seat of our pants.”

This statistical void is disorienting in ways I didn’t expect, and I have found myself seeking out another form of evidence: the anecdotal. I’m so eager to uncover at least one story of a person who has undergone two bone marrow transplants for my type of leukemia and is many decades out, living a good, long life. When I went in for a procedure last week, I asked my nurse if she knew of any. She thought for a moment, then said she was treating a man who had very recently had his second transplant and seemed to be doing okay. It was not exactly what I was looking for. It was too fresh, and like my circumstances, still too uncertain.

What’s even more unsettling is that I can find plenty of examples of things not being okay. Just last week, I learned that a beautiful young friend who has been on the same journey as me—two bone marrow transplants for leukemia on roughly the same timeline—has relapsed and was back in the hospital. The self-protective part of me wanted to stopper my ears and avert my eyes, because it was triggering, in the same way that I imagine my relapse was triggering to others who had been through transplant and thought they were a “safe” number of years out. Added to that, it was the day before my quarterly bone marrow biopsy—a time when my fear is most rampant and alive.

But then I thought about how there were times in the past when I got a friend’s bad news and I didn’t show up—times I did stopper my ears and avert my eyes. And not only did I come to regret it deeply, but eventually I came to understand that avoiding the fear and the grief and the pain doesn’t protect you. It may go underground for a little while, but it always resurfaces and often with a vengeance. So I spoke to my dad, who knows my friend and her family, and in the end, we decided to visit, even if it was going to break our hearts. And though it wasn’t easy, we had a lovely visit, and I’m so glad I went. Afterward, my dad spent the weekend with me, and he kept saying, “I’m so happy I get to spend this weekend with you.” We always enjoy our time together, but it typically goes unsaid. Visiting my friend broke us both open, making space for real tenderness. There was sadness but also a greater capacity for love and for gratitude.

So where does this leave me? What do I take from both the problem of statistics and stories? One is a variation of Gould’s conclusion about variation: that everyone is a medical unicorn. We can never know for sure how long we have. Uncertainty is part of being human. As for stories, they are still my greatest comfort. Over the years, I’ve found solace in the words of others, not because they’ve necessarily trod the exact path I’m on, but because they remind me that I’m not alone. There’s a bolstering effect to knowing that many others have endured things that seemed unendurable, that they’ve loved and lost and continued on—maybe in this human form, maybe in the words they leave behind.

I was reminded of this recently after rereading a couple of old favorites. One was Ann Patchett’s memoir, Truth and Beauty, about her friendship with the poet Lucy Grealy. The other was Lucy’s memoir, Autobiography of a Face, which I’ve long called my “sick-girl bible.” (I’ve been asked to pen a new foreword for the 30th anniversary volume of it, which may be the greatest honor of my life.) Those two stories got me through ten years ago, when I first got sick. Now I’m in very different place in my life, and they’re valuable to me in new ways. This time, I wasn’t as focused on the medical details or the grueling aftermath of Lucy’s cancer treatments. I wasn’t as focused on her tragic death. Instead, it was the love they shared. It was Ann’s capacity to keep showing up and showing up and showing up, even though it came at great cost to her. These stories are a testament to the power of love, even when it can’t save the people we love most, and the importance of continuing to show up even when you know it’s going to break your heart, and also the privilege of heartbreak—to have loved that deeply, that ferociously, even when you know it’s going to hurt like hell.

And with all of that said, I’ll turn to today’s essay—called “Rewiring” by the memoirist Margo Steines. In it, she talks about her history of avoiding the hard things, and how they resurfaced, and how she eventually learned to face them. It’s a story of hope, of post-traumatic growth. May it help you remember your strength and all that you’ve overcome.

Sending love,

Suleika

Some Items of Note—

• We’re meeting at the Hatch, our virtual creative hour for paid subscribers, today—that’s Sunday, January 28th from 1-2 pm ET! Our beloved community manager Holly will be hosting this time, talking about the interplay between a creative community and creative discovery. Find everything you need to join us here!

• Each Friday in our Isolation Journals Chat, we share a small joy from the week we want to hold onto. This week I wrote about the joy of solo time with my beloved papa and our cozy staycation at a friend’s creative sanctuary. To be buoyed by the small joys of others and to add yours to the chorus, click here!

Edvard Munch, The Heart (1899)

Prompt 280. Rewiring by Margo Steines

When my child was newborn, I had what I now understand to be severe postpartum anxiety. Her birth was not easy—few of them are—and I emerged from it feeling shaken, ill at ease in my body and confused by my mind. I found myself consumed with intrusive thoughts of danger and harm: Would someone stab me while I was walking with her and leave her helpless body lying in the road? Would a painting fall off the wall and hit her while she played on the floor? Would I fall asleep and roll over on her? Along with this chorus of possibilities, I felt a deep worthlessness. I was a new mom with a history of depression, living far away from family, during a pandemic, in a triple-digit climate, so it was easy to dismiss everything I was feeling as the natural and appropriate reaction to conditions. It was easy to dismiss myself. 

Becoming a parent made me realize that while I had moved on from my younger life, which was marked by violence and addiction, I never actually healed the trauma of it. I just stepped over it like a leaking bag of trash on the sidewalk, as if it no longer had anything to do with me. But once I was holding the tiny person I had spent ten years hoping and wishing and atheist-praying for, the stakes were different. I couldn’t burn down or exit my life, because she needed me. She will always need me.

In therapy I learned that while I had managed to clear my mind of the chaos that used to drive it, I never healed my body. My nervous system was wrecked by the compounded effects of years of various forms of violence and chaos. I haven’t taken a drug in seventeen years, and I haven’t sustained any sort of violence in more than half a decade, but my autonomic nervous system has been stuck in a whining idle for a good twenty years, and that does something to a person.

I learned that with somatic therapy it is possible to retrace my steps, to use bodywork to rewire my mind. I learned to press the flats of my knuckles into a hard cool wall when I feel the dull buzz of panic rising in my chest. I learned to place my palm over my heart, to feel the floor against my feet, to experience myself safely existing. I learned to breathe the way my child does when she is regulating her nervous system, a skill that came wired into her: two fast inhales and a slow exhale, the physiological sigh. I learned more from her than I ever expected, like how to simply exist as a human being—a skill I am still working on.

Your prompt for the week:

Write about a time you realized you were struggling. What prompted the uncovering? What resources did you turn to in the wake of it? What is your relationship with that particular struggle like today?

If you’d like, you can post your response to today’s prompt in the comments section, in our Facebook group, or on Instagram by tagging @theisolationjournals. As a reminder, we love seeing your work inspired by the Isolation Journals, but to preserve this as a community space, we request no promotion of outside projects.

Today’s Contributor—

Margo Steines is the author of Brutalities: A Love Story, holds an MFA in nonfiction writing from the University of Arizona, and lives and writes in Tucson. Photo by Aidan Avery.

For more paid subscriber benefits, see—

• A New Year’s Journaling Challenge, an evergreen series of prompts inspired by the ancient wisdom and searing insights of Rumi, designed to help us hold the cruelty and beauty of life in the same palm

• On the Spiritual Dividends of Pain, a video replay of my Studio Visit with filmmaker, writer, and actor Lena Dunham, where we talked about living with chronic illness, asking for what we need, and the advice she’d give her younger self

• Heartbroken Friend, an installment of my advice column Dear Susu, where I answered a question from a reader who survived cancer, then lost a close friend and doesn’t know how to move on

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