Dodged a Freight Train, Hit by a Truck

My mother has Leukemia. We discovered this, very abruptly, at one o’clock in the afternoon on Christmas Eve. The nurse told my dad to take her to the nearest hospital immediately so they could begin chemotherapy, and an hour later, she was one of the many people waiting on a stretcher for the very limited medical staff available due to the massive influx of Covid19 patients. She didn’t get a bed until much later on Christmas Day.

She’s in the same hospital I was for my spinal surgery a year ago.

Her particular variety is Acute Myeloid Leukemia (AML) which is fast-moving. At her age, she has a less than 10% chance of making it out of the hospital at all. My dad is the only one allowed to visit her, and he can only do that for fours hours maximum per day. My parents’ house is over an hour away from the hospital, so he’s driving two round trips every day. We offered to cover an extended stay hotel room, but he doesn’t want to risk Covid exposure by adding a new location to his routine. He wouldn’t be able to visit her at all if he gets sick, because her immune system is basically non-existent.

I don’t talk much about my mother, because if you’ve met me, you’ve met a younger version of my mom. She’s likely neurodivergent, but has never sought formal diagnosis, which is probably just as well, because at her age, she’s more likely to be dismissed as a “crazy old woman” rather than be taken seriously.

Nobody has ever taken her seriously, and her mask was that of a clown for the longest time. When she started to get too tired to keep it up, people thought she was just no fun any more. They called her anti-social. They made fun of her for not being able to make chit-chat with strangers at the grocery stores, or responding bluntly to people trying to sell her things. These are familiar, normal autistic behaviors. She was being authentic.

“Where’s the old Jeannine?”

She’s right there, you’ve just never met her.

Since I can’t visit my mom in the hospital, I’m doing the only thing I can. I’m using my mask to cheer her up, making her laugh until she pees her hospital gown, and talking to her like she’s not crazy. Because she’s not crazy.

She says she gets confused sometimes, and that she feels like she’s losing her mind. I tell her that the world is a confusing place, and that if she loses her mind, maybe it’ll bump into mine somewhere. – K

Translating an Unwritten Rulebook

Back at the beginning of the year, while in the early recovery from my spinal surgery, I had to force myself to take a break from writing. I could barely sit up at the time, and leaning over a keyboard for two weeks just didn’t seem wise. I listened to my doctor, and my partner, and “took it easy” for as long as I could stand it. The result was a backlog of two stories in my head at once: The Bucket Lord, and Becoming Ulysses.

I thought having two impatient beasts in my head at the same time was bad. Now there are six. Six different first scenes are flickering, waiting for me to press play. But I can’t press play, because I’ve been told it’s against “the rules”.

As an autistic, I have an almost compulsive need to find and follow rules. It’s one of the ways I to try to navigate what seems like an otherwise chaotic and arbitrary existence. (Notice I said “seems like” instead of “is”… I’m clearly talking to a neurotypical crowd here.) By default, there is “definitely, definitely, definitely no logic to human behavior”, (Thank you, Bjork.) so I spend a lot of time lurking and studying “normal” humans to try to figure out what I should be doing to blend in.

That being said, I spend a lot of time reading up on publishing guidelines, following literary agents and editors, absorbing as much information and “dos and don’ts” as I can to try to unravel the mysterious “query letter” conundrum. As I’ve touched on before, there is no “right way” to craft this elusive, and all-important document. Every literary agent has different tastes, preferences, and protocols. Each learned different “rules” for what is and isn’t good… and none of them seem to agree on what they are.

That’s why I have six books on pause. One piece of advice many published authors post is to “write the next book” while waiting to hear back on the previous one. So I did that, and at my speed, I’d written seven books by the time the last rejection for the first one came in.

Then another agent said, “when I see that a writer has ten unsigned books in one year, that’s a big pass from me.” I wrote eight books in a year, and only eight because I had part of my spine removed and replaced. So now, I feel like I’ve “broken the rules”. I’m supposed to go slowly. I’m not supposed to let the stories out of my head, or people will think I’m a hack.

Now, this is where a neurotypical person would say something like, “who cares what that person said? Go at your own pace.” I know they’d feel like that made sense to them, but to me, I’m thinking, “What if that’s the right rule? What if the other person was wrong?”

There are six books paused in my head. A traffic jam of honking, impatient commuters trying to get through the toll booth that is my hand, and out onto the open highway of blank pages. The longer I wait, the more will build up, until there are too many to count. All because of one traffic cone, which very well may have been left there by a teenage prankster, has told me it isn’t safe to let them through.

Autism isn’t insanity, it’s uncertainty. It’s constantly questioning everything you do because you’re terrified that you’re always doing it wrong, and nobody seems to know where the instruction manual is. – K

Other Ramblings…