Me, the last person for the question “so what are your plans for the break?” to come around to during lab meeting today: idk it depends on when my mom dies and how much of the ensuing work absolutely needs to be done by me in colorado, because otherwise I’m either staying here or maybe going to see my dad in CA
Everyone else, who has answered various kinds of “staying here/visiting family/etc”: 😨
Me: don’t worry she has brain cancer!! It’s been like this for like seven months now
Everyone else: 😨😨😨
Me: oh yeah no it’s a good thing, it’s a relief honestly, she’s like, very unaware and close to death at this point
Prof, who has known about this since July or so: it does get that way, you know. *waxes philosophical about death and how college is stressful and important, but in the grand scheme of things, it’s not THAT important*
Prof: so on that note, I guess I should let you go! Have a good break everyone!! Congrats on finishing the term!!
Me: SORRY GUYS 😬
And then the prof and I had a nice very straightforward talk about how yeah, I don’t entirely know if I have to go, but it would be nice if I didn’t need to, and I’m not her executor but yeah it IS kind of weird that her boyfriend of ~5 years or so is, and hahaha well one of many reasons I’ve been mostly estranged from her are her weird decisions about things
But for real I’m very much looking forward to having some certainty about anything soon. Can’t wait to stop traveling as much. Can’t wait to just like, NOT think about death and brain cancer all the time and go down to my normal volume of calls from family members. Can’t wait to stop thinking about my mom all the gotdam time. I am TIRED let me REST
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Accessibility takes too goddamn fucking long.
My brother was paralyzed in October 2023. We got him home from the hospital (in Texas, when we live in Iowa) in a clunky old hospital chair. He hated it. He was scared and angry and in pain and his life had just changed forever and he couldn’t do anything for himself in that wheelchair. His first goal (aside from learning how to transfer) was to get a wheelchair. My family was lucky enough to afford one so we thought it would be easy enough. Nope.
We couldn’t buy him a wheelchair. He needed a prescription. For a wheelchair. A doctor had to examine him and declare him in need of a wheelchair. It wasn’t good enough that he had scans and tests showing tumors cutting off his spinal cord. He needed his primary care doctor to examine him during a physical and write a prescription. He was making 2-4 transfers a day, tops. He had no energy to get to a doctor. Home health was in and out every day. He had no time to get to a doctor. He didn’t get a prescription for almost a month. Then it had to go through insurance.
We asked if we could skip insurance and just buy a wheelchair for him. Nope. They wouldn’t sell us one, not even at full sticker price. It needed to be approved by Medicare. We ordered a wheelchair, a nice one, a good shade of green, sporty, small. It would let him move around the house. He would be able to cook, to reach drawers and get stuff from the fridge and brush his teeth and put his contacts in at a sink. We were told it would take awhile, maybe two months. Silently we all hoped he would be around to see two more months.
He went on hospice care on a Saturday in March. On Monday, I was calling his friends to come see him before he died. I got a call on his phone. It was the wheelchair company. They were about to order his wheelchair, she said, but there was an issue with insurance— had he stopped being covered by Medicare? Well, yes. When he started hospice care, he got kicked off Medicare. The very nice woman I talked to told me to call her if he resumed Medicare coverage so she could order his wheelchair. He died less than 12 hours later.
We ordered that chair for him in early December. Medicare didn’t approve the order until March. He was dead before they got around to it. He wanted that fucking wheelchair so badly. The only reason he had any semblance of independence and any quality of life for the last five months of his life was because the wheelchair company lent him an old beater chair, a very used model of the chair he ordered. If I could go back and change one thing about his end-of-life, I would get him his dream wheelchair. He told me again and again he couldn’t wait to get it, so that he could feel like a person again. He made the best of what he had with that old beater chair, but it still makes me mad to this day. He was paralyzed. He needed a chair that afforded him dignity. We had the money for it. And yet, we were left waiting for five months, for a chair that wouldn’t even get ordered until the day he died.
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Might I inquire as to what, precisely, a Mustain't is? (Aside from a string of letters I hesitate to Google in that order.)
In October 2014 I went on a road-trip to the Dryest Place In America.
I was having a rough year, very depressed from having dropped out of college for the third time. I decided a road trip was in order to re-set my brain and get a little distance. Being that it was October, and therefore all the campgrounds in the American Southwest were filled with people who have the good sense to camp in reasonable temperatures, I elected to take my parent's minivan so I could car-camp anywhere suitably isolated, and looked up some of the southwest's geographic extremes- the highest place I could drive to (Pikes Peak), the lowest place (Badwater Basin), and for fun, the Dryest Place in the continental US, which turned out to be the Pinacate Volcanic field just west of Organ Pipe Cactus National Monument. It gets rain maybe twice a century and has no standing water, despite being less than 100 miles from the gulf of California.
It's a startlingly beautiful and alien place. The ground is a deep chocolate brown to black volcanic sand, and in mid October, the rabbit brush is turning bright yellow as it shifts to autumn, the organ pipe cacti are a dark green and stand, partially concealed in the brush at exactly human height. The air is alive with birds and insects and bats at night. The stargazing is like looking into the eyes of God.
You get there by driving down a little dirt road called "El Camino Del Diablo", or "The Devil's Road".
I drove out about three hours from Glendale, AZ to get there, arriving at sunset, and felt a profound sense of peace. I stargazed, listening to the bats hunt and sing, and slept peacefully for the first time in months.
I stayed out there for three days, sketching and painting the landscape, taking strolls through this almost alien landscape, and enjoying the light and sound and total absence of human intrusion besides myself.
On the fourth night, it was a new moon, and I awoke in the middle of the night.
Something was amiss, and it took me a while to realize it was because I could NOT hear the bats. I was sleeping inside the van with the rear windows rolled halfway down rather than trying to set up the tent, so I when I sat up, I looked out of the van's reflective windows to discover what at first appeared to be A Horse.
It was something between pale gray and bright white in the starlight, standing maybe a dozen feet from the van, sniffing curiously. It made sense- I was in the middle of mustang country and there was quite a bit of foliage in the area for it and it did look like a truly wild horse- lumpy where the bones were jutting out, dusty about the hooves and face.
I was instantly seized by the sort of paralytic fear Sleep paralysis is made of.
I couldn't move.
It wasn't quite looking at me because it couldn't quite see through the windshield into the shadowy into the shadowy interior, but I had the distinct impression that if I looked away,
it would know,
and get me.
I already had problems with horses. My beloved Aunt Helen's Prize mare tried to kill me on two separate occasions, and the year before I had to carry my sister-in-law backwards out of a slot canyon whilst reciting the Saint Crispin's Day Speech as loudly as possible to keep a mustang from trampling us to death.
This is approximately what it should have looked like:
Instead, it was... off. like trying to draw a horse from memory.
The waist tapered in.
The legs were slightly too long or the torso slightly too short, probably both.
The ears were Triangular.
The head wasn't quite right- Too narrow and the jaw wasn't heavy enough.
The tail was too long and arced unnaturally away from the body.
The neck arched.
The nostrils were too high and close
The mouth too long.
Whatever this is, a Mustang it Ain't.
I watched it from the back seat as it sniffed around the front of the van, curious with about the side mirrors.
It moved around the van, nibbling experimentally on the front door handle.
It came up to the side windows, sniffing like a dog, and it's breath didn't fog up the glass.
Finally, it came up to the rear window, which was rolled halfway down to let the fall night air in. Not even half a pane of glass and two feet of air between us, and I could clearly see it's bright blue eyes.
Horses have Elongated pupils to give them a wide field of vision, and eyes that rotate sideways in their sockets so the pupil remains parallel to the ground. Rather creepy to watch, especially the ones with blue eyes.
A real horse that was curious about the interior of the van would have come up to the window more or less sideways, and looked at me with something like this:
Instead, the damn thing walked up and faced the back window head on, staring back at me with this:
I'm not sure how long we watched each other like that, eyes locked.
My eyes burned. I couldn't blink.
My mouth was dry. I couldn't swallow.
My throat began to ache. I couldn't make a sound.
My skin began to twitch, like I was severely dehydrated. I couldn't move.
My lungs burned. I couldn't move.
I couldn't move.
I couldn't move.
I couldn't move.
Something was touching the side of my hand on the seat next to me.
It's my water bottle.
The realization must have broken the terrible paralysis in the lower parts of my brain first, because by the time I consciously realized I could move again, I was already flinging my water bottle out the window at it.
The top was open, and splashed out the window at the Mustain't.
I've never heard such a scream out of an animal.
Something halfway between the sound of unquenchable rage vibrating in someone's chest and the way rabbits cry out to God when the dogs catch them.
It jumped back, pivoting away from the van, snarling at the water bottle. I don't think you're supposed to be able to see All of a horse's teeth at once, no matter how angry it is.
I watched it run into the night for some distance, it's pale body visible against the black sand and the dark gray shadow of the ancient volcanic cone it was headed for.
When the blood stopped pounding in my ears, I could hear the bats again.
I debated leaving right then, but I didn't want to get out of the van with that thing in the area, nor litter by leaving the water bottle out there.
I also had the awful idea that if I left now, it might somehow be able to follow me home.
I ended up staying up three hours to watch the sunrise, shaking and trying to figure out if I'd woken up from a vivid dream, if my meds had stopped working, or if that had really happened. I didn't dare move until I actually felt the temperature rise, before stepping out of the van to grab the bottle.
I had my camera ready- I was still using a DSLR back then- to take pictures of the hoofprints, to show how close it had gotten to the van.
No hoofprints.
Beetle tracks in the soft sand around the van, and the clear foot-and-wing prints of a bird that had hopped around then taken off.
But no hoofprints.
I went over the entire campsite with the tent broom, to make sure I removed every scrap of evidence I had ever been there, including my footprints, grabbed my water bottle, and drove the three hours back back to Glendale, then decided to do seven more hours of driving to Moab, Utah just to put more than 500 miles, the state line and at least nine things that could be considered "running water" between me and the Mustain't.
-
I still have that water bottle. It has a dent in the bottom from hitting something, but that could have happened at any time.
Strange thing though.
I can't drink that bottle dry.
I'll have it on me, drink whatever I've put in there- water, juice, iced coffee- and eventually feel like I've drunk the whole think and that it's empty.
But I open it up and it's still at least a quarter full.
I drink that.
I get thirsty.
I open it up again.
...and there's always a mouthful left.
Not sure what the side effects of drinking from a bottle cursed by a Mustain't to always have some left are, but it lives in the Emergency Breakdown Kit in my car now, just in case I meet another one.
---
(I'm a disabled artist and make my living telling stories, please consider supporting me on Ko-Fi or Pre-order the Family Lore book on Patreon)
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Listen to your elders
So last week I posted abut the importance of downloading your fic. And then three days later AO3 went down for 24 hours. No one was more weirded out by this than I was. But while y’all were acting like the library at Alexandria was on fire I was reading my download fic and editing chapter eight of Buck, Rogers, and the 21st Century. And also thinking about what I could do to be helpful when the crisis was actually over.
So first off, I’m going to repeat that if you’re going to bookmark a fic, you really need to also download the fic and back it up in a safe place. I just do it automatically now and it’s a good habit to get into.
But let’s talk about some other scenarios. Last October I lost power for over a week after hurricane Ian. Apart from not having internet or A/C I did find plenty to do, I collect books so I had plenty to read, but maybe, unlike me, your favorite comfort reads aren’t sitting on a bookshelf. So let’s do something about that, shall we?
In olden times many long years ago around 1995 we printed off a lot of fic. It was mostly SOP to print a fic you planned to reread and stick it in a three ring binder. And that’s totally valid today too, but you can also make a very nice paperback with a minimum amount of skill and materials.
Let’s start with the download; Go to Ao3 and select your fic, we’ll be working with one of mine. This method works best with one shots, long fic tends to need a more complicated approach. Get yourself an HTML download
Open up the HTML download and select all then copy paste into any word processor. Set the page to landscape and two columns, then change the font to something you find easy to read, this is your book, no judgement. This is all you have to do for layout but I like to play a little bit. I move all the meta, summary, notes to the end and pick out a fun font for the title:
No time like the present to do a quick proofread. Congratulations, you’ve just created your first typeset. On to the fun part.
Now you’re going to need some materials:
8.5x11in paper
ruler
one sheet of 12x12 medium card stock (60-80lb)
scissors
pencil
pen or fine tip marker
sheet of wax paper
white glue
two binder clips
2 heavy books or 1 brick
butter knife
You’ll also need a printer, if you’re in the US there is almost a 100% chance your local library has a printer you can use if you don’t have your own. None of these materials are expensive and you can literally use cheap copy paper and Elmers glue.
Print your text block, one page per side. Fold the first page in half so that the blank side is inside and the printed side out:
use the butter knife to crease the edge. Repeat on all the sheets. When you’ve finished, stack them up with the raw edge on the left and the folded edge on the right. I used standard copy paper, because you’re only printing on one side there’s no bleed to worry about. Take the text block and line everything up. Use the binder clips to hold the raw edge in place.
Wrap the text block in the wax paper so that the raw edge and binder clips are facing out. I’m going to use my home built book press but you don’t need one, a brick or a couple of books or anything else heavy will work fine.
Once the text block is anchored down, take off he binder clips and get out the glue.
You can use a brush but you don’t need one, smear some glue on that raw edge.
Go make a margarita, watch The Mandalorian, call your mother. Don’t come back for at least an hour
In an hour smear some more glue on there and shift your brick forward so that the whole book is covered. This keeps the paper from warping. While glue part 2 is drying we’ll do the cover. Get out your 12x12 cardstock
Mark the cardstock off at 8.5 inches and cut it. Measure in 5.5 inches from the left and put in a score line with the butter knife (the back edge not the sharp edge)
Carefully fold the score line, this is your front cover. You have some options for the cover title, you can use a cutting machine like a cricut if you have one, you can print out a title on the computer and use carbon paper to transfer the text to the cardstock. I was in a mood so I just freehanded that beoch. Pencil first then in pen.
Take your text block out from under your brick. Line it up against the score mark and mark the second score on the other side of the spine
Fold the score and glue the textblock into the cover at the spine. Once the glue dries up mark the back cover with the pencil and then trim the back cover to fit with your scissors.
Voila:
I’m going to put this baby on the shelf next to the Silmarillion.
The whole process, not counting drying time, took less than an hour.
If you want to make a book of a longer fic, I recommend Renegade Publishing, they have a ton of resources for fan-binders.
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