“I feel like this is the diabetes camp I never got to go to,” I said to Marina and Peter in our hotel room Tuesday night, weaving conversation in and out of diabetes, arcing over, through, beyond, circling back.
In the part of a conversation where I would usually skip over the minutia of diabetes, with them… I could go there, and be met with at least the nod of recognition and knowing. To be in the presence of people who intrinsically know the lived experience of chronic illness as deeply as you do is no small thing. It is life-affirming, ataractic. That we are not alone in this is all too easy to forget.
The three of us were in Pennsylvania for a few days together; I drove up from Virginia, Peter drove in from New York, and we met Marina who’d come from New York a day before. We were there for The Betes Organization, which I’ve written about before (here). Marina was presenting a 2-day performance and workshop at the Art and Design Research Incubator at Penn State, called The Invisible Elephant Project: 1000 Voices of the Chronic Commons. This project addresses the intricate inner labyrinth of diabetes complications.
I went to help however I could, as a Patient Ambassador for BETES, and because I’d never actually gotten to witness the work myself. Seeing the project… left me speechless. It was powerful, sensitive, charged, and enchanting. The work Marina does–the art of The Betes Organization–is alchemy.
The ancient art of alchemy was chiefly concerned with changing something of seemingly little value into something rich, of transforming lead into gold. What Marina has done with the topic of diabetes complications is to, first, create space for it. Delicate, necessary space for this invisible elephant in a room, in a life, to be acknowledged. This, in itself, is transformative, for there is freedom to be found here. Even in a topic that can feel, while we are sitting with it, unbearably overwhelming, suffocating in its constraint… there is freedom, always, to be found in constraint. It is not about transforming dark matter into rainbows and glitter, gilding it, or making it overly precious. Rather, the project illuminates the vast human experience of that which we carry, this invisible, chronic condition, and its complex terrain of emotion and uncertainty. It is about the stories we tell ourselves, and each other. Our voices, our truth. It is about listening. Making the unspoken, heard. The invisible, seen, felt, transformed.
When all of the ADRI events were over, Peter, Marina and I got ice cream at the creamery on campus, which was recommended to us from someone who said, “In this brief life, we must enjoy dairy fat.” I actually didn’t get ice cream, because I was still recovering from the corporeal shock of a long winded 400 blood sugar the night before. These past few weeks have been unsettling for me– I thought I knew how my body responded to things, and so I knew how to respond back, but lately something has been lost in translation. The way things sometimes shift. I’m having to unlearn, re-learn. Big scoops of ice cream felt like too much risk. (That being said, because this life is brief, I did eat some of each of my friends’ ice cream.)
There were several moments with these two people, navigating our way through a city none of us knew, or laughing in delirium at dinner, or rolling suitcases of BETES props through the snow-covered sidewalk, that I thought to myself, This, too, is alchemy. We sat together in discussion of what it means to flourish in this life with a chronic health condition. I, speaking only for myself, am still very much in the center of the fire, figuring out what all of this means to me, how it feels, how it teaches, how it impacts and informs the life that I am living and creating.
This shadow, this fire that we walk through, it is not for nothing. Shadow work is light work. My seeking for understanding, connection, and creation in life with diabetes began several years ago, in a dark room, in a dark headspace, alone. I wrote a letter to my illness, and I sent it into the internet-world, because I didn’t want to do this alone anymore. Since then, I have yet to stop writing to and through it, and people have yet to stop writing back to me, responding with their stories, expanding my understanding, deepening my purpose and drive.
And, of course, this accumulation of seeking, of words, of heart is how I found myself at Penn State with Peter and Marina, with THE BETES.
In Pennsylvania, in the snow, in the hotel, in the classroom, in the creamery, with our stories, with the invisible elephant, in conversation, in kinship, in connection… there, I found myself, not for the first time, grateful for the difficult magic of this life that is mine. These moments and these people are brightness that could only be born out of what has seemed so often to be, in the words of Mary Oliver, a box full of darkness.
Someone I loved once gave me a box full of darkness, she writes. It took me years to understand that this too, was a gift.