Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

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.

3 comments:

  1. Oh, you beautiful woman! You know what? I think that we all need to be more educated about seizures and epilepsy and who better to do that than you with your honesty, your truth and your GIFT FOR WORDS and please don't doubt you have that.
    I am lame at social media but it seems to me that perhaps on TikTok you could begin to express yourself in a way that would reach a lot of people. Youtube is good. Are you already on TikTok?
    See? I know nothing, stuck here in the stone age of bloggers which I still love but there are so many who I am sure need and want to find you.
    Meanwhile, I adore you and I can't tell you how many times I have thought of your videos and how deeply they touched me in so many ways that are incredibly, well, beautiful. Is it wrong to say that? I am simply relating what I feel.
    Also. Fuck the gym. I'm sorry but that's ridiculous. Bless their tender little trembling hearts.

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    1. (Keep accidentally deleting my responses. Ta da.) You're too kind. Words are a gift, aren't they? Not sure about my abilities, but hopefully i'll learn to seam everything together as concisely and poignantly as you do someday. (I mean, a girl can dream, right)

      I *want* to be a better advocate but feel like a poor candidate, and more likely higher chance of being more of disservice to the reputation of any community or organization. Thank you for your encouragement though. I've given a few talks here in town, but it weighs on me not doing more. I've thought about organizing a ride or run event. We've done tweed rides where everyone wears their best tweed and bikes around town and it's really fun. I'd love to a flotilla, but the whole seizures and water thing... Anyhow, i'll come up with something big or small and it'll feel and be great and i'll wonder what i was so worried about.

      Sheesh. You can say beautiful. (Feel anything but, as far as that context goes. Definitely not the adjectives I came up with.) Can't stop thinking about it either. The cavalry coming together like clockwork. Their caring for Tater taking so sweetly little talking-to-a-dog voices. Everyone's genuine concern. The reassuring tone in their voices hangs with me the most, i think. Probably i've heard so many times, and felt, in my limbic brain down to my basal ganglia (definitely going on the list ha) but hearing it with a fully functioning cortex, kind of slayed me.

      Oh, i'm definitely not on Tik-tok. Would that require, like, *talking*? and being on camera? (you've seen how that goes! jk) I like it here in the stone age with you.

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    2. (I mean *thank you*! For seeing the beauty in it with me. Despite me.) Ha anyway. I adore you, too.

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