adrian_turtle

Remember the chapter in All of a Kind Family where 4 of the sisters get scarlet fever and need to be quarantined? That was historical fiction, set decades before we had antibiotics. That was part of what made it so fascinating...that peek into how people used to feel, how they used to act, in the face of something I had never encountered because it was gone.

I was sitting here entering children's books into Library Thing when I ran across "Arthur's Chicken Pox." It's a picture book about a child (well, an aardvark. But an aardvark who goes to elementary school as a pupil rather than as a pet.) He catches the chicken pox like I did in the 1970s, when most kids caught chicken pox and were itchy and miserable for a week or so and had to stay home until they weren't contagious. Only Arthur is not a child of the 1970s...this book was written in 1994, ten years after it became routine (required?) to vaccinate American children against chicken pox. Most of the children reading this book when it came out never caught chicken pox and never would, they would not even meet a child who had it.

Thanks to everyone who recommended using LibraryThing for the cataloging problem I posted about back in July. I am enjoying it tremendously. Putting a book on the correct shelf, in the correct order, was already satisfying, but being able to enter it into the database with all the cross-references is even better.

We started referring to our LibraryThing as the Thingee. Affectionately, of course. I only spend one day a week in the library (well, sometimes two. It really does soothe my anxiety better than most things.) I can still peek at the database from home and see how its growing when one of my comrades is entering data. I can even tidy up some of the tags, as "dialog" and "dialogue" should NOT be separate categories. Neither should "2nd floor kids" and "2nd floor kids room," though "2nd floor little kids" should have its own tag.

When I was first looking for database systems, I was put off by what LibraryThing calls "collections," as they are both fixed and useless to us. The Thingee just ignores all that and has everything in "My Library." My comrade started putting periodicals in a spreadsheet, while I was figuring out how to deal with the books. I don't want to enter each item into the Thingee one at a time, as there are 573 of them. (I probably don't want to? It might be more soothing than Tetris, as a project for after we deal with all the books.) Is there a way to transfer the information over all at once? Or should we just put cards on the physical shelves saying something like "see periodicals database?"

I spoke to a young punk* at the grocery store this afternoon. They were wearing a jacket with "Serve/Remember/Carry Nalaxone" in big letters across the back, and I was moved to compliment it when we were waiting in line. There was a pause while we put things on the conveyor belt (because "great jacket" and "thanks" form a complete conversation.) Then they turned and asked if I carry nalaxone. And offered to help set me up with some and show me how to use it, which was very kind of them.

I do not have my act sufficiently together to carry a first-aid kit around. I can't even remember to carry my own migraine meds these days, as the last time I had effective migraine meds I wasn't carrying a cell phone, and I used my 20th century shoulders to carry a backpack with ease and comfort. But there were a couple of occasions last summer when I encountered strangers who...weren't doing well in the heat. I wanted to ask "are you ok?" but what could happen after that? I was in no position to actually help. I started carrying little bottles of water around just in case, but the added weight of a pint of water was a bit of a strain.

Then again, nalaxone doesn't weigh much.



*using "punk" in the descriptive, not derogatory, sense

I was just looking at my DW with thoughts of posting about today's unpleasantness, when I realized my last post was from the inpatient epilepsy monitoring unit and people might want to know what happened. The short answer is that they discovered I was on more meds than I really needed. I had been taking 3 different anti-seizure meds, because I started with one that worked ok, then added more when "ok" wasn't quite good enough. When things were going well, I tried reducing or eliminating the medication I had started most recently. It didn't occur to me or my doctors to try getting rid of the one I tried first. It had such a dramatic effect when I started taking it more than 20 years ago...I went from counting absence seizures in terms of "per day" and started counting "per month." My migraines eased up considerably. I lost about 30% of my intelligence, and started having a new and different flavor of depression, but it felt entirely worth it.

Without it, I feel so much smarter! Patterns just jump out at me. I can read music again. I can read Hebrew again. I can do sudoku puzzles, crosswords. Maybe I'll even try jigsaws! I can read the title of a book even when it's upside down!

What would you recommend, if you had a week to catch up on almost 30 years of visual media? I have been carefully avoiding movies and TV since the end of the 20th century. I sometimes read fanfic, or listen without watching, or look at isolated scenes of The West Wing or Babylon 5 or Sherlock or so I have some idea what everyone is talking about. But I am more or less clueless.

I will be in the hospital for a week, bored and sleep deprived and deliberately removing all my usual anti-seizure precautions. I expect I'll have plenty of migraines, because so many of my migraine triggers are also seizure triggers. Ick. There is no need to seek out movies with strobe effects. The EEG techs will shine a strobe light in my face every so often just to see what happens. But while I am staying up all night, I will be free to watch movies on my laptop as well as read or crochet.

What should I watch? I have library cards from the Boston Public Library and the Minuteman Library Network which might give me access to movies but I haven't tried to use that feature. Which commercial service should I subscribe to for the next month? I want to only buy one month service, from one dealer, rather than watching 3 movies from Netflix and 4 from Apple and 6 from someplace else. Murderbot and Black Panther are on the maybe list, but I don't want to buy two subscriptions.

My favorite movies are Muppet Christmas Carol and Princess Bride.
I watched Star Wars the week it came out in theaters and hated it.
I quite liked Star Trek:TNG, even though many of the episodes gave me headaches.
I liked the first Superman movie and Galaxy Quest.
I like movies where people talk to each other, and hate that thing where it looks like the cameraman is riding a trotting horse.

The short version of the story is that last month, I saw a new neurologist.* They want to do some tests to diagnose my seizures more accurately. If all goes well, I may end up on better meds with fewer side effects (less crushing depression, clearer thinking, better memory) and better seizure control without needing to be careful to avoid flashing lights (so I can safely go out at night, even on Comm Ave.) If it goes less well, I will end up right where I am now, after a very uncomfortable week with glue in my hair.

The Epilepsy Monitoring Unit is more daunting than the hourlong EEGs I've had at various times since I was 8. It would be a week or so in the hospital with electrodes glued to my head the whole time. (Not only can't shower, but can't even comb my hair.) It would mean tapering off my current anti-seizure meds, going without sleep on alternate nights, and doing things like hyperventilating and looking at strobes when they tell me to. They want to see exactly what happens when I have seizures or auras, and in what part of my brain. The resident epileptologist I talked to for more than an hour had useful things to say about the possibility that I might have localized focal seizures that would respond better to a different class of meds. And it would be safer to experiment with them in the EMU.

If we are doing these tests to find better meds with fewer side effects, that would be great! That could be worth a lot of discomfort. But the attending doctor who came in for the last few minutes of the appointment sees this study as a preliminary investigation for surgery...no. Definitely not. I do not want surgery. He told me I didn't need to decide about surgery yet, but I have decided and I resent needing to defend that decision. (This made it into his clinical notes as “patient is not excited about surgery.” I need to be more assertive.) Not too assertive, of course. I am a fat middle-aged woman with an illness that is literally all in my head, and it’s important not to come across as hysterical.


* My wonderful neurologist on Cambridge respected that I had seizures, migraines, AND depression, and would rather put up with a few absence seizures than make the depression too severe. He retired in 2021, and his practice replaced him with someone I didn’t like. Then with someone incompetent. Then with someone who said she didn’t do epilepsy and I should try consulting someone downtown. I went downtown, where the dispatcher asked what my primary complaint was? As I was having a quick absence seizure every 2-3 months, and a migraine every 2-3 days, I complained about the latter. The dispatcher sent me to a headache specialist, that I waited 8 months to see.

I asked the headache specialist about my seizures. (Some of my anti-seizure meds also prevent migraines.) He said he doesn’t do epilepsy; I should see a different neurologist. So I waited a few more months. To sum up: I am not in a position to go back and ask my old doctor if I am dubious about what this one recommends. And my PCP is kind but not useful for actual medical advice.

It's been a rough couple of weeks. It feels like it really shouldn't be, because I've done so little, but I've done something almost every day. Half a day sorting the synagogue library, going to services, going to a memorial where I wasn't even a secondary mourner. Starting significant house cleaning. 3 medical things, one physically painful, one triggering, one really long and worrying. I had been feeling pretty good this winter, and I resent suspecting that it's probably just not doing anything. And, of course, there's what an old friend of mine calls the polycrisis. War and plague and environmental disaster and political collapse.

I had intended to go to the No Kings rally this afternoon. Then I fell apart Thursday afternoon, after the admirable Rikibeth came over and cleaned my kitchen before I started getting ready for Passover. And didn't really have the ability to do anything yesterday, not even make a sign for the rally, much less get organized for Passover, as planned.

Today...it's not like I'm out of spoons. I have some. I could go to the rally. It feels important. It just feels like a choice between doing that and having much of me left to make a nice seder, where we read straight out of the printed book or where I find good appropriate add-ons from HIAS, and poems about modern-day frogs and tyrants and the importance of working for freedom in every generation. It would be nice, but I'm afraid it would be kind of empty.

I have part of the Auden poem taped up by my desk, to inspire me to make calls.
"All I have is a voice
To undo the folded lie,
The romantic lie in the brain
Of the sensual man in the street
And the lie of Authority
Whose buildings grope the sky."

I have so little I can give. It's not like I can be out there blowing whistles, or driving around delivering food to people afraid to leave their homes, or singing outside ICE offices on Wednesdays. But I could do this if I pushed. We'll see how it goes.

I know this seems like a petty thing, in these parlous times, but I am having a hard time finding bookends. We are finally, finally getting all the books out of storage and sorted and on shelves and they might almost fit if we have enough bookends. (If you're going to do part of a shelf as 2 rows of paperbacks, that needs at least 1 bookend to keep the last ones from falling into the larger books that are going as single rows.)

Where can I find plain metal bookends, like the kind they use in libraries? I do NOT want to get them from Amazon, for political reasons. Neither do I want to get them from Target. Once, I might have tried Home Depot, but it turns out that they are cooperating with ICE in deeply distressing ways so I don't want to do business with them either. Etsy is generally recommended as an alternative to Amazon, but they just have decorative standalone bookends. Some of them are really pretty but they are too bulky for this purpose.

We went to the Boston rally against ICE last Saturday. One of my study partners asked afterwards if it made me fired up with solidarity, and inspired to resist more strongly? Not really. Not this time. But my presence made the crowd a bit bigger, and I hope a bigger crowd inspired others incrementally more.

I saw a kid near the T station, on the edge of the crowd, and heard her ask, "Mommy, what's ab abol abolish?" She was of an age to be fairly new to reading, so she had to sound out the word on the "Abolish ICE" signs. Her mother said abolishing was when you got rid of something completely by making a law against it, like the abolition of slavery. It made me wonder about little kids tagging along when when Bostonians marched for abolition in the 19th century.

I am just thinking about concussions in a general family sort of way. I have a lot of experience of them, and also a lot of experience of downplaying my own head injuries. I thought that was just a matter of not wanting to use up my whining points when I might need them for dealing with migraine or motion-sickness or something else that could be dealt with more usefully. When modern concussion awareness programs started treating injuries like concussions if people were not unconscious for very long, I started reassessing a lot of the falls in my memory.

(That led to weird conversations with neurologists.
"Have you ever had a concussion?"
"Yes."
"How many?"
"I don't know." This can't be that unusual for people with seizures, even non-convulsive seizures like mine are fall risks. But he looked so very surprised.)

For quite a while I looked back on it thought it was just exhausting to deal with my parents' approach to medical emergencies. So I had years of solidly motivated reasoning to convince myself that any head impact I could walk away from must not be a concussion. Then I remembered it wasn't just the kind of exhausting as their, "Oh no! A child has a bad cut! Let us all run around in a panic and shout at everyone who can possibly be shouted at until the ER doctor stitches it up!" (Which is exhausting, and not what the first aid manual means by applying pressure.) It's that AND their belief that people with suspected concussion ought not be allowed to sleep.

A few decades ago, when I was feeling oddly wistful about young athletes growing up with the modern concussion awareness programs, I thought how great it was that they were prescribing more rest as well as diagnosing concussion based on less severe symptoms. Oh well, too bad we didn't know about that back in the 1970s, isn't modern medicine great? It turns out that my mom still believes people with suspected concussion should not fall asleep. She fell and hit her head a few days ago. She didn't want to drive herself to urgent care because she felt dizzy and her vision was kind of blurry, and she didn't want to sit in an uncomfortable waiting room with a terrible headache. But she suspected she might have a concussion so she had to stay awake for 24 hours. After doing so, she called me and said she was fine and I shouldn't worry. I told her that modern best practice was to get some rest after a head injury, ("But this might have been a concussion! I had to stay awake to make sure it wasn't a concussion!") but first phone the doctor to ask if you have one of the symptoms that would need the ER. ("Why should I go to the ER? If they tell me it's a concussion they would just tell me to stay awake for 24 hours and if I do that at home at least it won't hurt my back.")

I'm not sure how I feel about this.