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With chronic illness, I often feel perpetually suspended between worlds, in some kind of grey area of healthy/sick. While I was still in the hospital, upon diabetes diagnosis, recalibrating everything I’d ever known about taking care of myself, I asked my mom, “Does this mean I’m sick?” She paused, then said, “Don’t think of it like that.”

Eleven years later, I don’t really believe it “depends on how you look at it” so much as I believe that no matter how we look at it, there is both darkness and lightness there. Not alternating, but simultaneous. Not dueling, but co-existing.

I’m reading a book by the brilliant Rebecca Solnit (yes, the same one I quoted last time) and she’d spent the better part of the previous 2 chapters talking about the ways her mother abandoned her while she was growing up.

Then, she shifted within her own story and wrote this:

Like lawyers, writers seek consistency; they make case for their point of view; they do so by leaving out some evidence, but let me mention the hundreds of sandwiches my mother made during my elementary school years, the peanut butter sandwiches. When my friends began to have babies and I came to comprehend the heroic labor it takes to keep one alive, the constant exhausting tending of a being who can do nothing and demands everything, I realized that my mother had done all these things for me before I remembered. I was fed; I was washed; I was clothed; I was taught to speak and given a thousand other things, daily, for years. She gave me everything before she gave me nothing.

I could say, yes, diabetes has felt to me at times as “a being who can do nothing and demands everything.” But that is not the whole story. The truth is messier, more slippery, ever more intricate than Good vs Evil. What have thousands of days living with Type 1 diabetes brought me? So many things. So many bruised things; so many beautiful things. An awareness, a sensitivity, and a reservoir of strength that I carry with me in everything I do–not in spite of diabetes, but because of it. I can’t demonize something that has connected me to so many people,  places,  ideas, and brought me so much purpose. This thing that has brought me to my knees with its inescapability has taught me through that same inescapability everything I know about acceptance. It is teaching me, still, how to not run away. It is teaching me what is staying, what is sitting, what is being.

Diabetes is too much a part of me, intertwined in everything I do and am, to say This part of me is good and This part of me is bad, or This part of me is Me and This part of me is Other. To go down that path would be to end up with a body divided. That is a dangerous place to be. I know, because this happened, I’ve been there. Minimizing, disassociating, villianizing, attempting to shoulder through with brute force, throwing in the towel (then promptly scooping the towel back up because my life depends on it)– I’ve ricocheted like a pinball through my own life, through my own bodily experience.

These days, I try to acknowledge the whole story (as much as I can while still being a human subjective in her experience) in all its multi-dimensional truth: wellness and illness, strength and fragility, sorrow and joy.

I wrote this yesterday in a different context, regarding something else entirely: because although my trip to New York was pure magic, it was also difficult, the way everything feels difficult these days. Difficult magic. 

It fits here too, for what has my whole experience with diabetes been?

From my body’s autoimmune attack–which would’ve killed me had I lived in another time, or even, grievously, in this same time but in another, less insulin-accessible place, to every high blood sugar I have lowered and every low blood sugar I have raised, to the depths of despair and every sun-dappled morning:

it has all been difficult magic.

 

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11/9/16–bright lights: notebook from K, note from V.

In the days since the election, writing has never felt more vital to me. It is what I’ve clung to–mostly other people’s, mostly poetry. But also my own. Also long, winding prose.

It feels primal to me, to run to books. Art helps, I’ve said to many people this week, sending them a link to one of my favorite poems, while wondering if they think I’m minimizing the situation, if I’m delusional, if I think a poem is going to save us from our racist, misogynist, xenophobic, outrageously unfit president-elect.

But art does more than help, and it does more than heal. Art is a political act. It holds unparalleled power, real movement, revolution.

I’ve had a loop in my grief-stricken brain humming, How, how, how can I contribute? Action, of course. Showing up. Organizing. Communicating. Advocating. Volunteering. But what can I *create* here? Where do I begin?

Last night, I started reading a book written by one of my very favorite writers, Rebecca Solnit. I checked it out at the library the weekend before the election. Had I read these words of Solnit’s before the election, I would have loved them. They would’ve etched into my skin. But they wouldn’t have hit bone quite the way they have now.

The mysterious alchemy of words, of stories, is how often we hear them or read them at what feels like exactly the right time. Kismet.

The book is The Faraway Nearby. This is the beginning of the first chapter:

***

What’s your story? It’s all in the telling. Stories are compasses and architecture; we navigate by them, we build our sanctuaries and our prisons out of them, and to be without a story is to be lost in the vastness of a world that spreads in all directions like arctic tundra or sea ice. To love someone is to put yourself in their place, we say, which is to put yourself in their story, or figure out how to tell yourself their story.

Which means that a place is a story, and stories are geography, and empathy is first of all an act of imagination, a storyteller’s art, and then a way of traveling from here to there. What is it like to be the old man silenced by a stroke, the young man facing the executioner, the woman walking across the border, the child on the rollercoaster, the person you’ve only read about, or the one next to you in bed?

We tell ourselves stories in order to live, or to justify taking lives, even our own, by violence or by numbness and the failure to live; tell ourselves stories that save us and stories that are the quicksand in which we thrash and the well in which we drown, stories of justification, of accursedness, of luck and star-crossed love, or versions clad in the cynicism that is at times a very elegant garment. Sometimes the story collapses, and it demands that we recognize we’ve been lost, or terrible, or ridiculous, or just stuck; sometimes change arrives like an ambulance or a supply drop. Not a few stories are sinking ships, and many of us go down with these ships even when the lifeboats are bobbing all around us.

In The Thousand and One Nights, known in English as The Arabian Nights, Scheherazade tells stories in order to keep the sultan in suspense from night to night so he will not kill her. The backstory is that the sultan caught his queen in the embrace of a slave and decided to sleep with a virgin every night and slay her every morning so that he could not be cuckolded again. Scheherazade volunteered to try to end the massacre and did so by telling him stories that carried over from one night to the next for nights that stretched into years.

She spun stories around him that kept him in a cocoon of anticipation from which he eventually emerged a less murderous man. In the course of all this telling she bore three sons, and delivered a labyrinth of stories within stories, stories of desire and deception and magic, of transformation and testing, stories in which the action in one freezes as another storyteller opens his mouth, pregnant stories, stories to stop death.

We think we tell stories, but stories often tell us, tell us to love or to hate, to see or to be blind. Often, too often, stories saddle us, ride us, whip us onward, tell us what to do, and we do it without questioning. The task of learning to be free requires learning to hear them, to question them, to pause and hear silence, to name them, and then to become the storyteller.

***

This left me breathless. It grounded me in a time that feels groundless.

Now. To hear, to question, to pause, to name, to see. To tell.

We have much to do, my friends. My suggestion: begin in the listening.

Truly, this work has never mattered more.