Prompt 252. Stillness & Might

On living with limitations by the journalist and educator Brittany Collins

Hi friend, 

Last week, while in Switzerland enjoying a languorous breakfast with my 96-year-old grandmother, she said to me, “How different this is from your last trip. You haven’t been glued to your computer the whole time!” She was referring to my last visit to the motherland in February 2020, when I was putting in punishing hours on my memoir Between Two Kingdoms while trying to stay on top of other professional to-dos. As exhausting as that was, I felt even worse when I wasn’t working. I had this awful sense of guilt that I wasn’t using my time “productively.”

Which is strange, because I knew that wasn’t necessarily the right way to be. The last time I was sick, I worked at a fever pitch (often to the point that I literally ended up in the hospital for a fever). Later, I wondered, Why did I do that? Why did I put that pressure on myself? Why didn’t I allow myself time to rest and restore and do things that felt fun and nourishing?

I know it’s probably a combination of influences—from growing up in a hyper-productive household, to feeling like I’ve lost so much time and so many opportunities from being sick and need to make every moment count. But over the past few months, as I’ve entered this new phase of recovery, I’ve been resisting the urge to dive back into the grind in that punishing way. I’ve been trying to say yes more often to the experiences that don’t necessarily feel productive in a work sense, but feel productive in a soul sense. So I said yes to this trip with Jon, yes to quality time with my family, yes to daily swims and long walks with River. If 2022 was my year of love, then 2023 is my year of yes.

Hence the photo above. A few days ago, my brother Adam and I went high into the Alps with two guides, and they led us to the edge of a promontory, and we strapped ourselves into paragliding harnesses. The first time I was in treatment, I went skydiving, and I remember thinking how terrifyingly counterintuitive it was to jump out of an airplane at 10,000 feet. I worried I would feel the same kind of panic, but this was so different. The guide told us that instead of flinging yourself out, you simply wait for the wind to catch and carry you.

And sure enough, the parachute caught a breeze, and it began to lift us, and we just stepped off the ledge and were flying. For the next half hour, we coasted over Lake Geneva, taking in the glacial blue waters and stunning alpine peaks. It was one of the most exhilarating experiences I’ve ever had. At one point, the guide encouraged me to stretch my arms out, and I thought of that famous Frida Kahlo line: “Feet, what do I need you for when I have wings to fly?”

By the time we finished, I felt so calm, so grounded, which was the opposite of what I had felt beforehand. On the way up the mountain, my brother and I talked about how we were both stressed, as happens when you’ve been traveling as a family for weeks, as we have. But I was also starting to feel a thrumming anxiety about returning home in a few days, attending to all of the regular life things that have been piling up in my absence. More than that, I was feeling overwhelmed by the medical things on the horizon, which include a bone marrow biopsy next week and a donor lymphocyte infusion the week after.

I always feel anxious before a bone marrow biopsy—“scanxiety” is a familiar feeling for many of us. But I also hit a wall this week and have been needing to sleep so much. It’s probably just a result of having been on the road for so long and having pushed myself to do more than I’m accustomed to doing, yet there’s always that gnawing doubt. But while I was up in the air, I was so present to the shifts in light, to the changes in the wind, to the sensation of fog, and I got out of my head and back into my body. In the midst of all of it, I thought, When I’m heading into my biopsy, I can call this to mind. Rather than being in my head with worry about the future, I can remember this moment—or other favorite memories, like jumping into the lake with River close behind or that languorous breakfast with my grandmother.

The limitations that illness imposes—they’re complicated. Relapsing was my greatest fear, and I was devastated when it came to pass, and even more devastated when I learned I would forever be in treatment, forever in the in-between. But my limitations are also showing me a path toward a fuller life—one where I eagerly step off a ledge into thin mountain air and behold the world from that bird’s eye view, where I can be humbled, where everything can be right-sized, where I can remember how gloriously small I am in the grand scheme of things.

This paradox of limitations is the subject of today’s guest essay and prompt, “Adaptations,” by the writer and teacher Brittany Collins—and given that it’s Disability Pride Month, it feels apropos. When I first read Brittany’s piece, my eyes widened in both recognition and relief. It’s sometimes disorienting and at the same time profoundly comforting to come across your own private thoughts so beautifully expressed in someone else’s words—to understand that you’re not alone in those feelings. For that particular kind of company, please read on.

Sending love,

Suleika

Some Items of Note—

• We’ve scheduled our next meeting of the Hatch, our virtual creative hour for paid subscribers. It’ll take place on Sunday, July 30, from 1-2 pm ET. It’s a little later than normal, given our holiday travel schedules, but I promise, it’ll be worth the wait! Add it to your google calendar by clicking here.

• If you’re in the market for new titles for your to-be-read list, our extraordinary community manager Holly Huitt collected all the reading recs from the newsletter a couple weeks back into this tidy google sheet. And if you have recs to give, you can even add to it too. Happy reading!

Prompt 252. Adaptations by Brittany Collins

I’ve always been a push-through person. So a forty-mile breast cancer walk—streets lined with onlookers offering Gatorade and Band-Aids—felt, at the age of eighteen, like the surest way to mourn. Having lost my father to breast cancer and watched my mother endure the first of two breast cancer diagnoses, there seemed some metaphorical significance in pushing my body beyond its limits—to honor its aliveness and the not-aliveness of those who mattered to me. It didn’t occur to me that one day walking could prove to be a challenge.

Yet one year later, at the age of nineteen, I developed dysautonomia, a neurological condition similar to long Covid. Pushed down a hospital hallway in a wheelchair, peering from waiting rooms at the same streets I once traveled with confidence, I wondered how, in just twelve short months, youth and strength could turn into illusions. What now? I asked myself from a hip-level view of the world, as medical residents whisked around me. Visions of teaching, traveling to Spain, and someday trundling through the city with toddlers strapped to my chest and back suddenly evaporated.

It’s been seven years since that summer, since this condition sliced my life into a “before” and “after.” I still wish to run and dance with the fervor I once did. But as I approach a decade of growth, I also linger on all that I’ve gained. Because of dysautonomia, I’ve met groups of women who share my diagnosis who are dedicated to sharing resources and laughs; I’ve taught students with disabilities different from my own. I’ve grappled (if not completely come to terms) with the reality that flare-ups will happen, and they will be scary and so hard, but they’ll pass. I’ve found that books and flowers and forest trees can fill a life in ways I couldn’t notice when I was pushing through. 

Coming to terms with losses and gains is the task of a lifetime. I still mourn, wish, rage, and wonder what life could have been like. At the same time, I feel gratitude for all that my body has endured and all that it still allows me to do. I now realize that fortitude sometimes presents, on the surface, as fragility. When my body was at its weakest, my spirit had to become strong. And through that adaptation—learning to live within limitation—I turn to the world with different eyes.

There is no “other side” to some forms of challenge. My story is neither a narrative arc nor a neat lesson learned, but a both/and embrace of beauty and fight, stillness and might—a bow to all that is lost, and all that remains. 

Your prompt for the week:

What does adaptation mean to you? How have you learned to live within limitation?

If you’d like, you can post your response in the comments section, in our Facebook group, or on Instagram by tagging @theisolationjournals.

Today’s Contributor—

Brittany Collins is the author of Learning from Loss and over 40 articles exploring trauma-informed practice, disability, and education. She is working on her second book, exploring invisible illness, and seeks women-identifiying individuals willing to share their stories; to express interest in an interview, please complete this form. For more about Brittany’s work, visit her website, or follow her on Instagram or Twitter.

For more paid subscriber benefits see—

• Show Up & the Muse Will Too, where I wrote about an unexpected hospitalization and what it taught me about swimming in the ocean of not-knowing

• Beholding the Body, an installment of my advice column Dear Susu, where I answer a question from a reader whose chronic illness has caused a growing gap between her mind and her body—and a rift between her and the wider world

• On Making Art from Hard Things, a video replay of my Studio Visit with the award-winning author Esmé Weijun Wang, where we shared insights about about limitations, creative ambitions, and how to marry the two