Revisions

It’s been a bit, huh? Well, hi! Hope you’ve been doing well in the interim.

 

Way back at the beginning of 2019 I finally had a completed manuscript for my book. An essay collection about chronic illness, and being neurodivergent, and about being a disabled mom, and about disability advocacy and representation. I had arranged parts by theme or topic and my reasoning for doing so was that illness/disability is ongoing and chronic and there was no diagnosis-treatment-cure narrative arc for my life. When I began writing about all of this that was the case-I was collecting more symptoms with no end in sight and had basically felt that people didn’t really understand what my parallel existence looked like-so I would show them.

 

Except…halfway through writing the essay-chapters I did get a diagnosis (Lyme and Babesia) and did undergo treatment that helped. So I was complicating things unnecessarily by intentionally NOT putting the book in chronological order. A huge overhaul was underway-rearranging, adding chapters to fill in details, revising what was there to make more sense, splitting up the appendix of medical conditions. With this version fairly well in hand I queried and well…

 

I got back really useful feedback that rang true as soon as I heard it.

It was too much. Too scattered across ideas and styles and conditions. Too scattered in themes and tone and too much detail. This isn’t verbatim at all, so we’re clear. The way the stories came out of my experience and my brain wasn’t the way it was the most easily or most enjoyably understood by a reader. There was a disconnect between what I thought I could give and what was most appreciated in a gift.

 

It rang true, but I didn’t want it to because I wasn’t sure I could tell a story straight. Each time I have tried to revise something in the past that was too much into something that was more digestible and normal I have not been able to. I lose something, and my new revised version isn’t quite right. It’s a B or B+ at best, when there are other people nearby doing consistent A work. Fear of another revision was the fear I’ve had so much of my life that when I try to do what neurotypical people do, I only do it-at best- 80% as well as they can. Which is not quite enough. It is nothing to be ashamed of, but it is often close without being right-and that can hurt more than a straight up swing and a miss.

 

So I thought about it. A lot. A lot, a lot. I went back and forth so many times trying to figure out what to do. One the things I did was to consider the Chihuly museum-somewhere we visited right after I got this feedback. His glasswork is vibrant and riotous and often odd, and I was saturated with the texture of one piece, the inner shine of another, the contrast of colors on another. There was so much to look at, to take in, to notice. This is what the inside of my brain often feels like; it was like an external representation of what I loved and celebrated and wanted to share. As I began to feel overwhelmed by it all I noticed something that was, in retrospect, so obvious I feel silly. Each art installation had boundaries.

It may be that all the pieces in a chandelier are the same color.

green chandelier
A green glass chandelier with many glass bubbles

 

It might be a room of vases in a similar shape but all different colors.

vases
Huge wavy glass vases, in firey magenta orange, blue, yellow, green

 

It might be a room that is a fantastical representation of a real life setting.

under the sea
glass sculptures in reds and yellows and blues and greens mimicking under the sea

 

It might be boats literally holding and containing variations on a theme.

Boats
A black background and two rowboats, one filled with colorful glass globes and the other with abstract flowers and bulbs

 

Those boats have been a visual guide for revising my book yet again. The one on the left has so many beautiful individual pieces-that are all spheres. The right has so many beautiful individual pieces-that are all botanical. The boundaries are what keep all of the thousands of pieces from being a jumbled overwhelming overstimulating experience. This art wasn’t straightforward portraiture, or sculpture. It was whimsical and weird, but impactful because of a few well-formed conventions. I felt like maybe I could do it. My essays could be contained in different boats. The simple idea that I could have more than one boat was a revelation! I didn’t think that would ever be allowed! Maybe I thought everything had to be thrown into the world at once because I wouldn’t live long enough to have time to do so-or maybe that I wouldn’t be given enough opportunities if I messed up the first one. Better to cram everything in at once, I think I thought. But this was showing me I didn’t have to.

 

I’d like to say I decided right then and there that I knew it was right to revise, but I didn’t. I was still scared and didn’t know if I had the skills to shape the whole thing again-limiting the narrative scope and turning brief bits of stories into an arc. Someone else (the fabulous Captain Awkward) gave me many tools to help decide what was right-one of them was assigning music to different chapters and see how they sounded together. Were they discordant? Was the tone smoothly shaped along the way or were styles jarring against each other? Was the mood of the music what I had hoped to accomplish? And in doing this exercise I realized both that no, my book wasn’t yet a playlist that made sense, and that yes, I do have some sense of what is conventionally “correct” and even maybe beautiful. The revision felt both like something that could be done successfully and that I could do successfully.

 

So August, September and October were spent revising, taking thirty thousand words out of an eighty thousand word manuscript and making them the basis for something new. I am proud of it, whatever else may come. I am proud of learning what I’ve learned about myself and my craft from doing this. The learning never, ever ends. But I haven’t had much time to write much else-not here. My submissions for individual essays have slowed down. I haven’t been published this calendar year, which is kind of painful in the way that jealousy stabs your heart and the industry wants to make sure you have a public presence as much as possible before they bet on you. But I haven’t stopped writing. And a lot of it, I think, turned out good. I’m happy.

When Fiction and Reality Meet

Room

My favorite reading experience, where the book I was reading matched the circumstances around me perfectly, used to be easy to pick out. I often used to take the train from the Chicago suburbs to Champaign-Urbana, when I bounced back and forth between my parents’ house and college. This particular trip I took was in the evening in the middle of a cold, clear winter. While the train was usually full enough that I was obliged to make small talk with a seatmate, this time it was almost completely empty and silent. Every other time I sat under fluorescent lights with dull grey metal all around me. This time I found myself in a refurbished Pullman car. Red velvet lined the seats, with a fringed gold trim edging the armrest. A sumptuous carpet rested under my feet. The lights had a soft glow emanating from ornate sconces. I burrowed myself into my seat, cushioned and alone, and picked up where I had left off reading The Shining for the very first time. The opulence matched The Overlook Hotel, and as I glanced out the window at an endless stretching snowy winter, seeing a single farmhouse light in the distance echoed my own isolation and that of the Torrences. For nearly twenty years that has been my favorite.

I may have a new contender. I have been sick with a really horrible protracted cold, and my boys are now sick with the same excruciatingly slow virus. My husband is traveling for work, and the boys have now missed three days of school. Last night my oldest wanted to sleep on the couch, so when he went to bed I tiptoed to my room and grabbed a book since I was not going to be able to fall asleep at 8:30. I had bought Room by Emma Donoghue more than a year ago and hadn’t touched it since. I’m not sure if I was worried that my heart wouldn’t be able to take it, but for some reason it nearly jumped off the shelf at me this time.

We are told the story through the perspective of a five-year-old boy named Jack. He and his mother are held captive in a small room by the man who kidnapped his mother years ago. The book opens on his fifth birthday and describes how they manage to make a life for themselves in “Room”, a place Jack has never left. It opens on the day of the spring equinox. I began to feel eerie, as yesterday was the spring equinox as well. Jack describes what TV shows he likes to watch, and because this is set in contemporary times, they are all shows my children watched too. Backyardigans, Wonder Pets, Dora the Explorer. The way his mother helps structure their days reminded me so much of what it was like when the boys were small, when one day can bleed into the next if it is just you together in the house, seeing no one else, going nowhere else. A state I am in right now. It is just us, quarantined away from the world, only using the resources we have on hand, and with each other as our sole company. It is both intimate and confining all at once.

Jack counts his teeth with his tongue when he is trying to distract himself. Each time he does I do the same and am reminded that a crown popped off one of my teeth earlier in the day. As I think about when I’ll be able to get that fixed Ma takes a ‘killer’ (painkiller) because her bad tooth is aching very badly. She is also waiting to get her tooth fixed, though for her it may never happen.

I read more than half the book in that one sitting, entranced, both seeing myself and the day I just had and the day I was about to have stretched before me, and seeing how much more I had that they didn’t. A window. A telephone. Food in the cupboards. The ability to open the door and feel fresh air on my face. Things I would never have stopped to appreciate that I still have even if I don’t have the Outside right now.

I’m not capturing how odd it felt, how odd it feels when your reality and fiction blends so perfectly together that you cannot extract one from the other. It isn’t something you can plan, though luckily sometimes it comes together. I read a scene from The Signature of All Things where the protagonist laments how useless paper is on a tropical island exactly one day before discovering all our paper was a humid mess in Puerto Rico. We read Harry Potter for the first time through the 2016 election and the coincidences were spooky (though that is an essay for another time). I guess I’ll tell this story better after twenty years than I do now, but I wanted to say…

Books are magic in a totally unpredictable and unusual way. And in the middle of a boring household cold, I got to experience that again.