Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

Sunday, December 11, 2022

And Another (dumb) Thing! (cringe warning)

Governor Festus, (the bestest)

Just did the dumbest thing. Darn it. Probably shouldn't admit here or anywhere, but ah, well. After the last few months the last thing I want to do is undermine any last shred of confidence my farmstead boss and his wife might have in me. 

The day started normally. I was kind of fuzzy around the time i usually go to work (these days noon or one- ha). I warned my boss by text i was happy going out, but he might wind up seizure puppeteering. (So he can decide- eat his Wheaties or whatever.) Only it wasn't my boss, it was my mom i accidentally sent the text to. So thaaat's always great, worrying my mom on a day she really didn't need to worry.

So i texted my boss for realsies. He replied, "All good, nothing pressing. Rest up. I'll text you tomorrow." 

Took Tater dog out on a loop in the snow and felt totally fine. Played fetch like four places.

Hadn't done anything new or different to my knowledge, and don't remember any other specifics other than i woke up, and for whatever head-shaking, face-palming reason i jumped to a most serious conclusion in advance of all the facts and information. ...and texted the one person i should not have.

(And really this could be me independent of seizures and anti-seizure drugs. Seriously. I don't know.) So what i texted them was, (πŸ™„πŸ˜ΆπŸ˜)... "Is it the apocalypse there too?" (They live just south of town surrounded by windswept wheatfields.)

In my defense, it was foggy. I was thinking it was just a dense morning inversion. We can get a little socked in right in town compared to where they are, so i was wondering if the sun had managed to break through down there a little better. This time of year it seems to take for-ever to get light out, but it 9:30 it should've been much brighter Lord knows why i didn't think things through a little further. ...And i'm sure you see where this is going... 

My boss' wife/ boss lady, texted back, "Haven't noticed?! Is your power out??" 

and  <sigh> i replied, "It's still dark here. Like nighttime." ... ... ... "It is morning right?"... 

... My boss, "948 PM!!!"

πŸ™„πŸ˜‘πŸ˜£πŸ™ƒπŸ˜œπŸ˜–πŸ˜©πŸ˜¬πŸ€ͺπŸ₯΄πŸ˜³ 

Help me, Rhonda. 

I'm sure i just got over-tired. But yeesh. I'm okay with crazy, i just don't want to be crazy-oblivious. Or maybe i do. Maybe it's better not knowing. Who knows?

Wish i could've stuck with the counseling thing. Wish i could trust in it again. I'm kind of flooded with everything still, but i think i'm doing a little better than i was a week ago. 

It definitely all throws me for a loop, sometimes. Could definitly just be crazy. Could definitley just be a stellar dissociator. Could definitely be possessed by demons. Could definitely be exhausted beyond comprehension. Maybe all of the above even. 

But at least it's not the apocalypse. So there's that.

Had a really nice visit with my sister since then and got to play Hock-Ay!!! Felt so good. Both things. Maybe i'll get to some of those details, and maybe i'll get to some of the posts i've been marinating on for weeks now. God-willing. We'll see. 

Forgive the cringe. (Dare i present you with anything less?!) I love you.

Monday, December 5, 2022

Post Viewing Musings

A few of my sheeps: those fatties jockey around for their grain like a game of musical feed buckets. Not really conducive to decent pictures unless you like the head-in-a-bucket look.


Like to think i'm fairly well-adjusted in most other facets of my life but maybe epilepsy eclipses the rest of my issues. Knowing my brain, could've just forgotten them. <shrug> Afraid i'll always feel insecure about having seizures. Even though i know, rationally, i shouldn't be apologetic about a lot of what i am so very, very sorry for, I can't seem to override those automatic thoughts. Just want to express *gratitude*, not one more single thing about me. (I mean, they just saw me gork out and have a seizure. They already know i'm sorry). The last year or so i was doing much better at eliminating it from my vocabulary  It was nice while it lasted. It dawned on me that it's not a very nice thing to tell yourself repeatedly; that you're sorry when you're beautiful and radiant and generous and 'sorry' couldn't be further from the truth. And when i'm saying 'sorry' as an apology, i want it to carry weight. It's always the first thing i say when getting my words back after a seizure, i hear. My favorite medic said. 'Once you start saying you're sorry we know you're okay.". Maybe it's just hard-wired and true in both senses. Ah well.

My main cope is dodge/skirt/deny but i've swung the last few months from avoidant to anxious/preoccupied over seizures. Not sure catharsis helps but seems my depleted default state is wallowing in it. So that's been my last few days. I've gone to work and done some things but not without intermittent bouts of face-screwed-up crying. Not just for the weight of all of it, but struck and overwhelmed by beauty i encounter every day. It'd be less hard if i didn't love it so much.

Just after posting here last, I was asked not to come back to the gym until i get my shit sorted. Not looking to spark outrage- I'm in full agreement. But sad, nonetheless. It's one of my favorite places in town. Didn't do much* lifting (see none) but the group classes comprised about 98% of my social life the last while. My sister used to take me on awesome bike rides on backroads around the rolling hills of the Palouse. Since they've gone done moved, i don't really want to be on a trail in the middle of wheat fields, basically, and or riding on a road by myself when things are wonky. I've been grateful being able to get long, low-intensity rides in, (even at the risk of utter humiliation), at the gym. Seizure-having is pretty effective motivation to keep my resting pulse rate low so my body is as efficient in an oxygen deprived state as it can be. Helps I love riding, besides.

And besides again, after it happened i couldn't imagine going back. Ever. Maybe it's just fresh, but i hope to shout that was the most humiliating day of my life. It was one place i'd really hoped to get to know more people; where i'd already found some amazing friends. I was emphatically *not* a gym person until i went there but i got hooked. I love the place and so many people there, but can't say i'm comfortable, necessarily, in that environment. Plus i didn't always have a clear or safe place to an exit. I do well in adrenaline-fueled situations, but i'm afraid low level anxiety doesn't have quite the same effect. Afraid psyching myself out with things like that probably isn't conducive to the efforts of the seizure mitigation committee in my brain. 

I had three point five seizures there over the last 2 years. 

I'm bummed about it. (That's where i fought the cops recently. Sure can't blame them for not wanting a total disaster show at place of business again. Ugh.) It was awful. I've played sports my whole life and never picked up on any distinct correlation with seizures and exercise. I'd assert the opposite, actually. At least that used to be the case. The new VNS might be throwing a spanner in the works, but i'm not certain. At least that's what i'm implicating for now. It's a whole additional variable to factor in, as if there weren't enough. The new one, unlike its predecessor, preemptively shocks if it detects a rapid fluctuation in heart rate. (Mine does spike beforehand so there might be a net benefit outside cardiovascular demanding situations. Who knows?) But it cuts off my breathing when i'm exercising, which i'm pretty sure isn't very helpful as far as seizure abatement goes. 

Our ice hockey season is just starting up though, so that's great consolation. Clearly the Big Guy loves me, and wants me to be happy. We got a new rink this year, even. Really looking forward to it.


One thing about watching that video footage is i've thought of a million more words associated with seizures. My (Me so Phonia post is now a novel.) So there's that, even though my memory and handwriting are so bad right now, i'd go back to type it in and not be able to decipher what i wrote only minutes ago.

Spent all morning and then some, trying to remember the name of a good friend of mine. Still never came to me until i got home and looked it up this afternoon. Ah well .

Keep having to delete long strings of letters and numbers. Falling asleep at my computer. Guess i'm just going to go to bed at 5 today. What the heck. I'm beyond tired. And it's been dark for an hour at least, besides.

...

Regarding my starring role in C.O.P.S. Moscow, Idaho , some of the footage wasn't as bad as i expected. The most climactic part wasn't as violent as i was braced for, even though the officers who on scene described it as 'scorpion-ed' to the medics. First i've heard that one. Cooler than a fish, anyway. The ambiguity of some of it was what bothered me. Other ones i've seen seemed to follow a more simple, straightforward progression with a clear ending. I'd never had any longer seizure recorded. I'm sure i've told people before that once i'm snoring and in the recovery position, i'm fine. That didn't seem to be the case, exactly, that time, but who knows.

My understanding is a number of people with epilepsy have psychogenic seizures also. The story i've been telling myself is any longer ones i had were just psychological, probably. I'm alone most of the time. Seems i'd have met my demNot sure with those if they'd fizzle out and i'd roll out of it eventually, even though it's not supposed to work that way. But you know us assholes have at least as many lives as cats.

The positive aspects of having a seizure monkey on your back almost outweigh the poop-flinging tendencies of that particular creature. Almost. If i could have lived it and then be out of the woods and family, friends and innocent bistanders had never had to deal with it, i wouldn't change a thing.

Keep thinking of the cavalry rushing in to help. They were so good to me and Tater, it pulls me back to tears. No wonder my brain fakes seizures so often- Who wouldn't want that kind of attention?! Too bad i couldn't find anything better than my Sam the Eagle grimace when everyone's watching.) Honestly, if i could remove all of my lines and utterances from the performance, their voices and reassurance could be an ASMR audio track. Such peace-of-mind. What's more valuable than that in this world? Not many people get to appreciate so tangibly having a literal battalion behind them. Yeesh. 

The snow's only just started and i've already lost a dozen gloves and mittens but i found a fleece-lined prodigal this morning. Headed for some farm chores and some sitting with sheep. Straw and snow are soft. And also one of my favorite friends and heroes agreed to go for coffee. She's dealt with  (not claiming ownership here.) I've been wanting to catch up with her forever. Worried the conversation will wind around to seizures eventually and it'll be overwhelmingly talking about me. I hate that.

And and all of that is certainly enough for me. Glass brimming. I'm a mess, but i'm drowning in gratitude for sure. Vacillating between two poignant extremes. But what is life, or art, or synergy with out a little contrast?


Love ewe.

Thursday, December 1, 2022

Oh. (Star of my own show)

(Please accept cute dog and kitten images as compensation for πŸ’© content.πŸ’)


Thanks so much. I hate it. (Everything in this post here, save the pictures, pretty much.)

...

Did a terrible thing. I almost forgot.

Are we still national news out there?

Had the gall distracting local law-enforcement folks and agencies, (even more than i already have), during a major investigation. 

After my skirmish with police, one of my EMT friends suggested getting the bodycam footage so it got me thinking.

Honestly, that interaction, i remember plenty. So i didn't. 

Since then I've been working with my neurologist to shore up some Emergency Action Plan protocols. (EAP! sounds about right.) And realizing my perpective's pitifully limited despite the extent of my seizure-having career. So maybe this couldld serve as an insightful measure. 

I'd asked the medic/chief about being transported earlier in the month- if it was one of the other medics, maybe, that hadn't been as patient as usual giving me time to come out. It was the only instance i'd ever called 911 on myself, i knew, so presumed maybe they'd arrived quicker, in time to load me onto the gurney and haul me in before i started waking up. 

I'd been caught out longer than planned. It was dark. I was out with my dog and kept getting lost and losing/dropping things- leash, mittens, whatnot. I knew i was having seizures, at least partials. In leiu of the tether I'd had at the start, i slipped one of those keychain lanyards around her, that i had. It must have caught up on something and left a ribbon you can see in the video. Sorry Tater! At some point before the police arrived, I'd lost her, panicked and called dispatch. They were amazing. Even though I sucked. I remember the squad car pulling up. I remember just beyond where he found me, there was dirt and gravel and trying to crawl off the asphalt. But that's about all until I was home the next day. 

She answered, "I was the medic for this last one. It was bad. You weren't coming out of it.''... "You weren’t breathing, which you usually don’t for a bit, but then the seizure slows and you do. It was a long time, that you weren’t. When mpd arrived you were on your knees and immediately went into another seizure. They called us. You were still seizing when I got there, and blue". oh.

So given all that and all my cleverness, i requested footage of that seizure, from a week or two earlier...

Usually I think i have a decent guage of severety, but the last few months have been kind of muddled. I hadn't bit my mouth too badly for that one and they'd let me out of the hospital before sunrise the next morning. 

I'm still not sure the color quite checks out. But it was worse than i imagined. For sure. Full admission.


Coincidentally, one of my favorite YouTube creators posted a video yesterday of one of her sheep having a seizure. People in the comments were confessing to crying and feeling upset; while I watched and wasn't bothered one bit. It was easy projecting my experiences onto the ewe and knowing she wasn't hurting at all. Seeing her fall in her plush wooly coat, gently onto a soft bed of straw. Knowing she wasn't conscious for most of it. No big deal! (For me!)

When an email sprung up in my inbox later that day, i'd almost forgotten i'd requested it. i was almost surprised, for whatever reason, anything had come of it. Part of me thought, no big deal, i'll be able to watch it and dissociate from the situation knowing i'm checked out. Like watching the sheep.

But it didn't go that way exactly. At the start, i was like, faaaaaaake! One of those seizure spoof, parody videos. A real travesty to the real seizure-havers out there. It was pretty different from watching one in a controlled, hospital environment on a VEEG potato cam- seeing it all play out. Guess I'm a little more convinced now. Kind of. Never presumed anyone was being an exagger-badger before, but i'm understanding how my leading drama-llama role riles everyone a little. Still some hokey parts, for sure. And the music is fittingly staged too, (even though i was talking to dispatch on the phone just before, so who knows why or how it was still playing in the background.) Quality theatrical entertainment is all i can say. 

Maybe clobbering the long-departed drafthorse to death in my last post the 48 hours before left me vulnerable to post-seizure-footage ingestion gastrointestinal distress. I over-work everything in art. My main cope is avoidance, but i'm an anxious creator. Especially involving anything to do with seizures. And now after watching I'm shook. My dog, the army of helpers. me. All resilient, but it doesn't make me hate it any less. So. Forgive my rudely passing it on. (Here- get a whiff! It's super gross! C'mon! Check it out!)

In my usual fashion of dragging maimed varmints in the cat door, here's a thing. It's worse watching than going through. I highly recommend you save yourself the half hour and skip the following video content. 

And i'll trade any of y'alls resting bitch face for my dreadful old man seizure grimace. Really hoping I don't dawn that particular visage ever in real-life. (Can see why i get called in as a dude pretty often.) None of the facial expressions or noises are emoting- once both of my arms go rigid, I'm oblivious. And even knowing that, it was uncomfortable watching. for me. Anyhow. At least now I know if anyone asks it was me having the seizure, i can just tell them no, it was Sam the Eagle. Amazing likeness, amiright?!



IDK. Maybe i'm just choked up because everyone is even more amazing than i could ever imagine. (And i'm beyond words and comprehension with gratitude and admiration for them already.)

And i still want to get to my sheep-shearing and cop squabble posts soon.

Painted the roses brown and the walls putrid around here already, so what the hay? Tell me if this is just twisted exhibitionism. Being a disturbing, disturber, some sort of perverse attention-seeking behavior. I think it's weird as, myself. I can definitely take it down. I'm guessing it's one of the worst seizures I've had- I would've transported me too. FWIW. Sorry again. Could/would/should probably edit them down, but I'm just going to hold them out with my nose plugged, offer them to you like a couple of bizarre carcasses and continue on shrieking down the hill. Warned you! 

If you do, watch it like I watched the sheep- knowing I feel nothing. Don't think of it from any innocent bystander's viewpoint. That's my suggestion. (I'm a bigot and a lot of things, so definitely don't feel bad for *me* about any of it. Save my hideous eagle face. We can all laugh about that.)

(Body camera footage from both officers on scene. Both videos are the same event, as viewed from each officer's perspective.) All the trigger warnings, I guess:

(1st on scene POV)



(2nd on scene POV)