It’s one of those days of waking up with extra pains and fatigue. You know what I'm talking about. Last weekend, my capacity for pretty much anything and everything was very small. It’s a bit more voluminous today, despite my general “oogie” feelings (tip o’ the hat to Stephen King’s Misery). But why and wherefore? Shrug.

Speaking of Mr. King, I’m rereading The Dark Tower series while also listening to a podcast series comprised of discussions between two people who’ve read it before and one who hasn’t. Since I read the bulk of his work when I was far too young (started at 11 after reading Amityville Horror and Michelle Remembers, a satanic panic cult account sold as nonfiction but probably mostly false that continued to confirm for me that the very worst can most definitely happen). King started the series when he was 19. He wrote more in the series, but then was hit by a truck and almost died. Fans wrote to him saying he’d better hurry up and finish because they needed to know how it ends. He finished. Then he went back and revised the first book to better align with how things unfolded as he wrote. As a kid, I read the first edition of that first book. Now I’ve read the revised version. The threads he’s able to connect not only throughout the series but woven through many of his other books are remarkable and super fun to find. And he’s done this without extensive planning.

His process—and mine—got me thinking. First, my mental health is boosted by being in the middle of stories I find intriguing and want to finish. That’s also true of learning in general, but clarity around the story thing is kind of new to me. Secondly, King was obviously deeply affected by the accident, as he almost died, was in deep pain, and was disabled for a time. And then there’s the thing where we don’t know how the story will turn out and only get perspective later.

When I read On Writing, King’s memoir/writing guide, I was heartened that we share a similar writing process (albeit he’s infinitely more disciplined and prolific). He describes it like unearthing a fossil bit by bit, or chipping away at stone until the statue emerges, little by little. He doesn’t outline or map it out. I’m the same. The uncanny connection to the place where the words are coming from is an integral element for me, and planning it all out would cut that connection. Sometimes, as I’m writing, I’m like, “ Oh wow, that’s where this is headed?!?” It’s weird, but I think it’s also partly why I love reading and writing; it’s an adventure and exploration that can lead to discovery.

How in the Sam Hill does any of this relate to chronic illness? Well, all lives are stories unfolding. And while many of us try to plan and control every tiny thing we can, “the best laid schemes o’ Mice an’ Men gang aft agley,” as Robert Burns writes. It unfolds and emerges. Sometimes we can see the shape it’s taking and refine it, and sometimes the meaning deepens only after time and life cast their shadows and grow their moss. MS is one part of my story. And, looking back, I’m more able to see its origins and threads stretching into parts of my life. Its shaped decisions, pushed and pulled me and my family, and continues to—in part—define how my story is unfolding.

Sometimes I’m able to appreciate this (When I’m not pissed that, for instance, in one moment, my wife and I are jazzed about actually spending some time together in nature, but even as I’m standing there talking about it, the iron maiden of fatigue is closing in on me so I have to lie down first which wastes time and it’s so fucking frustrating). Sometimes, I can detach from the pain and other symptoms enough to see how the emerging shape isn’t entirely terrible, and that, if I refine here and there, I can surrender enough to smooth out the sharpness and see where there might be beauty.

I have to live for these moments. I call a Congress person. I do the best work I can. I hug my kid and try to be present for her. I brush our cats. I donate. I try to spread kindness in the face of the worst things happening. I lie down. I get grumpy and depressed. I lose capacity. I gain a bit back. I send a medical study to the nephrologist who told me MS and its treatments don’t impact the kidneys because doctors love to get links from internet “experts” (SARCASM) but also I absolutely do have main character energy around my own kidneys. It’s all part of the same story unfolding in real time. I’m powerless about some of the big chunks being carved out. But I can refine, hone, and find the shapes that make meaning.

MS is a real cockadoodie a-hole, as perhaps is your illness/condition. And we might be trapped in said conditions. But even Paul Sheldon in Misery shaped his story while surviving horror upon horror. We can, too.

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