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)




Monday, November 28, 2022

Logomisia- Odious ode turned essay/tribute to words I hate associated with epilepsy

It's a one word sentence day. And they just came flooding in. Here's a sordid offering:

Low go MEsia: (cringy. ME-centric, self-absorbed nature of seizure ruminations. gaping insecurities. public-scab-picking. self-deprecating. self-flagellating. self-defecating. cathartic. broken telephone. busy signal. line dropped. disconnected) "a strong dislike for a particular word (or type of word) based on its sound, meaning, usage, or associations. Also known as word aversion or verbal virus"
    
-Ode to words and things related to epilepsy that make me squirm. (maybe sad is the word hiding, abiding, dwelling under wriggling skin) a poem, of sorts, (if you will, Generously). liable to updates and revisions/surgical resections. perhaps a work in progress (simmering since forever, maybe, but concocted, spewed out in a tangle the last [...week now].) NOT a reflection of what people with seizures are or should begin to think. Just my own personal associations (not necessarily my own experiences), my own negative thoughts and toxic self-talk. (Full admission my connotations and sentiments surrounding seizures are kind of warped, hyperbolic and unsavory. Maybe not healthy. I know. God-willing i'll be able to amend some of erroneous stories i tell myself in my head someday- forego the catharsis, preoccupation and foreboding. Maybe stop manifesting so much blooping mellowdrama. I don't know.)

(Plenty terms and phrases on this list i don't mind the sound of and some I couldn't love more. The list-starters, however, have been certifiably declared 'logomisic' and hereby guilty as charged.) 

May this also serve as a heartfelt tribute to anyone caring for people with seizures who are bearing so much of the burden helping us and extending incomprehensible amounts of kindness in times of need. Cheers to them the whole world over.

What words make you squirm, dear reader? Have any moist ones for me? Words that catch in your throat? Some gutteral utterances? discordant glottal stops? Not a fan of dipthongs? Won't find me judging. Any words that send shivers or always fall cold? Words with clumsy, clashing syllables? too many consonants to fit in your mouth? uncomfortable connotations? An assemblage of letters that makes your stomach drop out like an icy chasm? Any terms or idioms you particularly like or dislike having to do with seizures or disablity? Words you hate the sound of? Words so pretentious they scream freshly-picked from the clefted crevasse of a an ivy-league pedant?

(Sorry in advance for the following bleak and squalor and blah.) I'm okay. (I've only cried a few hours today. I'm sad but alright.) You all catch me when i'm falling. Every time i come crashing or stumbling back here with more tomfoolery.
Sorry if it feels like a sludge fire in here so often. This space greatly betrays how fortunate i am a majority of the time. It's highly biased toward my dung heaps, cluster flocks, WTF's and losing streaks. Forgive all my venting. Seems like it should help, but it still smells a bit like dirty boxers in here. Old drawers- musty, unwashed, skid-marked, not-so-fresh dundies. expired fruit of the looms. Gloomy. Forgive my not posting more often about the good stuff! I really do have faith. And lots of hope. But i've been a little mired lately and it's easy for me to get caught up in the muck. Sorry the mess. I'm grateful for you. beyond belief. ...Suppose that's all the longer i can delay the rest of this cringe-inducing deluge... (I tried...) 
...
TLDR: bleep epilepsy


Epilepsy- epileptick. blood-sucker. life sucker. Lac Megantic. sucking at life. afraid. infected. gremlins. ghouls. apoplectic. Hulk. menace. Godzilla monster. wreak. havoc. gang up. riled. carnal. gnarled. pestilence. primal. less-than. remedial. bemusment. ride-beggar. serpents. pathways. trodden. tarnished. intractable. terror. riddled. calloused. scoundrel. rascal. abject. mess. queasy. scared. merry-go-round-forever. tilt-a-whirl. benzo-coaster. bucking. bronco. roundup. rodeo. demolition. derby. crash. calamity. cranium. catacombs. vault. crypt. chaos. tomb. Colosseum. dragon's lair. lion's den. dome. demon-strate. syndromes. prostrate. prone. epileprosarium. cranial. skull. exhausted. dull. exhibit. symptoms. spells. spurred. spread. kindled. sparked. promulgated. washed over. wrangled. welled. quashed. apathetic. washed out. blasΓ©. anhedonia. excitable. neurons. moron. sad clown. 'It' 'E' Chucky. haunted. humiliated. erratic. puckish. epileprechaun. rugburn. yanking. pulling. petulant. fall-down. go-boom. old tricks. mischief. concussed. congenital. idiopathic. demoralized. walls up. walled-off. hollow. fortress. cursed. vexed. uninvited. torpedoed. tormented. unseen forces. beleaguered. insane. lame. excuses. sorry, sorry excuse of a human. leech. leaky eyes. fluid excretor. sacred disease. numbskull. cull ewe. bottom-feeder. stiff. stifled. muffled. muted. tuberous. succubus. incubus. sclerotic. terminal velocity. in the hole. medical bills. Buffalo Bill. will-to-live. meat bag. skin suit. big pharma. biohazard. waste-of-space. psycho. basket-case. cabbage head. viscious cycle. ta-da. ta-duh. look at me. la-di-da. yee-haw. who? whee. swings. slides. seen. saw. up. down. down some more. epileper. epileprous. twice-bitten. stricken. struck. SUDEP. sleep forever. unexpected. last breath. disturbing. corrupted. disruptive. extra. wrecking-ball. in-the-ditch. rude. sudden. matchbox. cumbersome. in a pickle. mired. liability. taker. faker. tired. toreodor. tinder drawer. trapped. notorious. barging in. inconvenience. waste of resouces. (sorry again. could not be more sorry) status epilepticus. epileptosaurus wreck.

Fit- (too big. surrender now. give in. concede.) fit of rage. hissy fit. tantrum. temper. conniption. pseudoseizure. psychogenic. PNES (say it out lout in a crowd.) tamp down. trample. tramp. treasonous. bully. beast. Taurus. raging. amorphous. Mephistopheles. snorting. cabinet. locked. clasped. Chinadoll. fractured. glazed. glass. staring. fixed-gaze. peering. hidden. gawking. caged. concealed. fractious. cagy. irascible. bowled-over. steam-rollered. brutal. shattered. twitch. tic. jerk. dried meat. jerky. dead meat. doomed. condemned. brute. jaws. clenched. nashing. chomping. shadow. boxing. fading. fencing. shudder. shiver. shivved. shut down. running on fumes. running through fingers. running through flames. house on fire. crumbling. trembling. tremulous. tremors. shaking. wild. make a scene. circus. tight rope. spectacle. balancing act. ten-out-of-tenuous. lasting impression. shit show. sideshow. surrounded. uh-oh. oh no. weird feeling. guts roiling. strange. estranged. shoving off. perilous. play charades. highwire. haywire. livewire. no great place to have a seizure. nowhere safe. ICU. 'can you see me?' 'know where you are?' unawerewolf. were. where. was-wolf. wrestle. snarl. prowl. howl. preyed on. prayed over. fodder. not awake. unaware. wherewithal. wherewithout. wherewithnone. not within. down-side-up. wrong side out. out-to-lunch. no wits about. wit's end. worn. weary. wary. wriggling. acting up. on-the-fritz. acting out. antics. unusual. unbalanced. not me. disbelief. regress. relapse. fall from standing. collapse. misfit. misfire. disgraced. discharged. missed bus. juggernaut. run over. EEG. spikes. waves. endless ocean. eke out. freak out. dumpster fire. dust-devil. firestorm. brainstorm. tragedy. drama. brain damage. whirlwind. twister. vortex. tempestuous. grimace. gravity-averse. no place in this world. wind-whipped. beaten. lashed down. blown up. shackled. restraints (minus four from scoreboard. five for your neck) negative points. ankles. wrists. strangled. asphyxiated. in the red. (game over) thrashing. writhing. disaster. melee. distorted. tortured. contorted. convoluted. wound-up. let-down. thwarted. plans. ruined. warped. action. potential. squandered. consumed. overwhelmed. frustrated. ¿por quΓ©? 'be okay' 'please be fine' 'please keep breathing' betrayal. betrayed. betrothen. engaged. pledged. praying. entreating. pleading. 'please don't leave me' 

Ictal- ick. Icarus. too high. flown-away. danger. too close. hot cheeks. spurned. smited. burnt. combusted. descended. injured. plummeted. limbs extended. triggered. aroused. fomented. throes. legs bent. provoked. elicited. illicit. scorned. singed. hurt. stubborn. muddy. arched. splayed. flushed. pale. fluttering. posturing. internal. conflict. melee. purple. skin. pupils. deviated. dilated. rigid. visage. ashy. inanimate. pins-and-needles. needle stick. pricked. prickled. son-of-a-prick. tickle. rhythmic. tinnitis. feeling sick. wrestle. yaw. belch. moan. blue-lipped. stiff. nails. gums. gurgling. grunting. drain-circling. cerulean. cold. clawing. blank. cyanosis. cyanotic. hypoxia. exposed. heat. fever. concrete. flared. fumbling. asphalt. aphasia. flaming. barnstorming performance. clothes-picking. tongue-biting. tongue-tied. saliva. intrusion. assailed. ambushed. attacked. listing. distressed. gone under. calamity. SOS. save me. 911! Emergency! Dial! hail. dispatch. dispatcher (but i don't even know her). paramedics. police. 'There she goes!' 'Timber!' sirens. wailing. sounding. Titanic. failure. hands on deck 'get a towel' RMS Epileptic is sinking. 

Postictal- dense. foggy misty. dumb-as-a-post. stunned. bungled. bumbled. unsteady. humbled. not ready. on-the-swerve. seizure puppet. muppet baby. pilfered. forgotten. crawling. gravel. grovel. reach for straws. wretch. wobbble. no escape. scathed. hands-and-knees. scraped. strafed. befuddled. wounded. wiped out. ashamed. embarassed. unwanted. hot-potato. potato head. rotten. bruised. spoiled. burned-out. looted. jarred shaken. despondent. disoriented. bearings lost. Humpty Dumpty. shell-shocked. shell cracked. insides-out. confidence-dashed. duped. slumped. lacerated. depleted. brutalized. brawled. bamboozled. zapped. zonked. slumped. sheepish. abashed. lips zipped. vanquished. trounced. tripped. pummeled. pounced. held down. battled. combative. fighting. futile. skirmish. dog-piled. sullied. rattled. soiled. pooped. soaking. barfy. mortified. tended to. no words. first aid. assistance. first-responders. reassured. bundled. backed. buttressed. rescued. covered. IV cannulas. peace of mind. scooped up. swooped up. signed refusal. advocates. ambulance. helicopter. intubated. life-supported. merciful. helpers. army. lifted. buoyed. forever-indebted. kept afloat. restored. revived. released. cavalry. police. paramedics. doctors. nurses. pillows. blankets. shirts off backs. firemen. EMTs. innocent bystanders. steeled. gaining altitude. enduring. heartened. indurate. grateful. 'we're here with you' 'you're alright' 'here's some water' 'don't be sorry' 'hold my hand'  gratitude. gratitude...like a heartbeat. Relieved. 

Inter-ictal-  nervous. risky. iffy. chancy. what-iffing. neurotic. catastrophizing. barn sour. buzzing. disclosure. divulging. disclaimer. closing in. bearing down. fated. insecure. disillusioned. awkward. owing. castaway. marooned. limbo. lampooned. buffoon. leaving. AMA. eloped. had enough. road-to-hoe. atrophy. festering. strength. waning. Sisyphus. struggle. hopeless. helpless. impotent. snowball. cascade. avalanche. exacerbated. isolated. speeding. rolling. downhill. hasty. heart-racing. momentum. growing. slippery-slope. migraine. achy. malaise. same song. same dance. pitiful. pity. repeating. repeating. blood draws. MRIs. labs. CT scans. neurology. assessments. a million apologies. survivor's guilt. admission. depression. jinxed. omission. secret. shrouded. cloaked. PTSD. superstition. que serΓ‘. exasperated. searching. seeking. resigned. re-searching. committed. confined. enclosed. cooped up. stripped. detained. taboo. brain-mapped. hospital bed. battleship. bed alarms. bed pans. bare-assed. catheters. watched. proctored. monitored. under observation. scrutinized. insomnia. managed. assessed. whack-a-mole. at-a-loss. clandestine. unmentionable. date-with-destiny. entrenched. mountains. valleys. somber. somnolent. gravid. graveyard. rubble. death. restless. uneasy. unreasonable. accommodations. cathartic. kid gloves. hovering. looming. anathema. animus. ominous. underlying. unspoken. soldiering. still going. keeping on. clinging. hospital socks. slipping down. grippy dots. don't fail me now. Maranatha. Lord come quickly. Your will be done. Re

Benzodiazepine- die. dying. diazepam. benzo. bozo. blackout. smashed. hazy. crushed. inky. incapacitated. opaque. brick. hit the rim. seizure rebound. spirit catches you and you fall down. central nervous system shutdown. respiratory-depression. power-outage. circuits. shorted. lights out. dampened. hampered. distant. withdrawing. alone. longing. formication. skin-crawling. pawing. pausing. sloppy. topple. mask. facade. need. stash. hoard. short-supply. dopey. snow globe. anesthetized. house abandoned. not home. out-to-lunch. door slammed. suppressed. soupy. grimy. barefoot. banished. PO. buccal. buckled. oral. PRN. 'as-needed' 'for seizures' tablets. drip. intravenous. intranasal. intramuscular. injection. inhibit. cope. squelch. midazolam. ativan. lorazepam. timenapper van. lifenapper van. boomerang. how'd we get here? under water. out-to-sea. amnesia. swept away. goodbye, dignity. hello, fatigue. head down to the rectal suppository. diastat. and 'figure your shit out'. 'please'

Seizure- seizure salad. Julius Caesar. tryant. dictator. overtake. overlord. word-salad. brain-salad. attention-seek. theatrics. lost in space. teleported. dropped-out. fixed gaze. fright train  twinge. tingle. swelling. prodrome. blessed warning. induced. suspended. stranded. heavy. hanging by a thread. contracted. quicksand. quicken. seizure threshhold. pit. abyss. brink. void. teeter. cliff. precipice. foisted. avoidant. hurled. chasm. scarp. spastic. spasm. cramp. crevasse. palisade. pang. apprehension.  indiscriminate. merciless. tense. braced. hyper-vigilant. aspirate. cease. stricken. snatched up. departed. detached. lip-smacking. in the clutches. carpe diem. seizure day. hash mark. eating carpet. carpet-bomb. cluster. carping. seized. unconscious. involuntary. lose control. exploring. probed. violent. surfed. sunk. floor safari. syringe. lobes. frontal. parietal. temporal. occipital. meningial. lobectomy. lobotomy, resection. spanner in the works. textbook. hallmark. complex. flop. sweat. vomit. filth. flailing. fail. bladder. bowels. fluids. leaking. seeped out. suplex. faceplant. pain in the proverbial eggplant. flopping like a porpoise. lost. swimming. treading water. flounder. adrift. unmoored. sucked asunder. jellyfish. sore. unsettled. untethered. frothing. on the ground. maggot. not grounded. harpooned. pooched. slayed. slain. anxious. guttural. groan. cry. wince. angst. yell loudly. reaching out. shout into darkness. evulsion. evil. revolting. rebellion. repulsive. bellow. convulsive. voided. incontinence. gripped. gripe. worry. fret. fear. nothing to hold onto. slipping. weeping. nightwatch. stopwatch. crap. protracted. time it. 'hang on, buckaroo.' 'keep breathing' 'we love you.' 8 seconds. eternity. 

Vagal Nerve Stimulator- (titillating, isn't it?) stimulation. stimulated. stimulator. stimulus. pulse-generator. implant. interred. embedded. electrode. undercover. covert. VNS. vague. trip to Venus. Vegus. wanderer. invasion. alien. foreign. body. scar. incision. last-nerve. tenth nerve. cranial nerve. [CN][X]. cost-benefit-analysis. gamble. dicey. dyspnoea. decided. impulse. decisions. wheeze. breathless. bated. waiting. arrhythmia. infection. stitches. slit. sliced open. knots. knotted up. sutures. interrupted. no avail. naughty. coiled. wrapped. frayed. in-the-fray. focal-motor. prophylactic. neuromodulation. esophageal. hiatus. heralded. MAUDE. report. inoperable. raspy voice. frontal lobotomy. pectoralis fascia. chest pocket. cerebrum. cerebellum. frontal cortex. glial. corpus collostomy. thalamus. basal ganglia. brainstem. bionic. cyberonics. LivaNova. no va. no go. 'help her' 'help her, Mom' 'Jesus' 'please' 'swipe the magnet'

Drugs- druggie. addict. bum. derelict. bummed-out. strung-out. taught-as-a-tick. psychoactive, psychotropic. numb. obtunded. spacey. capsule. sluggish. blitzed. dependent. deep end. dragged. alarm-set. impaired. spaced-out. hooked. netted. reeling. caught. digging through rubbish. memory-loss. sloshed. drugged. stupor. hashtag. poundsign. #AimforZero, loser. cobwebs. dusty. vacant. attic. panacaea. pills. inscriptions. magic. beanstalk beans. bullets. bitter. tablets. cognitive. deficits. retarded. sedated. vain. seeking. diving. jaded. elaborate. incessant. incantations: la-mo-tri-gine. le-ve-tir-a-ce-tam. lac-o-sa-mide. ox-car-baz-a-pine. carb-a-maz-a-pine. pheny-toin. zo-nis-a-mide. phen-o-barb-it-al. val-pro-ic-a-cid. gab-a-pen-tin. to-pir-a-mate...honeymoon. crestfallen. titrate. taper. vacated. skeptical. drowning. defeated. medi-cull. medi-cult. donezodiazepined. habituated. tolerance. missed-dose anxiety. refractory. frequency. too many. episodes. garbled. wrong channel. static. snowed. M.Dieties. wanton. empty. bottles. ineffective. regimen. vital-mins. vials. vitals-in-the-toilet. oblivious. denial. bitter. black label. AED darts. anti-*epileptic* medications- (anti *'person with epilepsy?') infinite. side-effects. toss back. swallow. slurring. slowing. spinning. hopium. hope-on-a-rope. delusions. wallow. 'word-finding deficit' read-a-script. prescribed.  non-compliant. unsubscribed. defiant. denied. vulnerable. suggestible. choke down. susceptible. swaying. public nuisance. dork. gorked.  strain on the system. Gonzo Lorenzo.  Alice in Wonderland. out-of-your-gourd. 'love you honey, but we just can't do this anymore'

Disabled- invalid. infirm. handicapped. crippled. feeble. incompetent. damaged goods. victim. debilitated. undermined. out-of-commission. cloistered. exiled. disordered. insufficient. derpy. daffy. dolt. defective. 'affirmative-action hire' reject. fruitless. maimed. mutilated. effed. 'handicapable' pariah. ailing. feckless. smooth-brained. problem child. diminished. bereft. annulled. faulty. stunted. moribund. good-for-nothing. useless. torn. knocked down. burden. slow kid. impotent. blemished. red shirted. demanding. desperate. dolt. disqualified. meager. weak. hors de combat. benched from life. God-forsaken. disavowed. cast aside. blighted. dulled. fragile. vegetable. NA. besmirched. wilted. shriveled. delayed. disappointing. cross-to-bear. burgled. charity case. discarded. bound and gagged. robbed. chasing. clipped wings.freak. grief. statistic. hogtied. dead weight. hobbled. timid. hijacked. kneecapped. gutted. deceased. buried. grieving. bargaining. 

'here lies hope' rest in peace, my darling dreams. 

Tonic-clonicgin and tonic. giant. Goliath. evil spirits. tipsy. topsy. turvy. fizzle. stirred. swirl. pop. swizzle. bubble. fizz. surge. let loose. touched. possessed. inhabited. owing. owned. Legion. jinn. demons. mauled. dirty. sabotaged. violated. exorcism. unquenchable. back-and-forth. self-destruct. mutiny. micturia. ironic. paradox. chronic. afflicted. paroxysm. painless. illness. diagnosis. catastrophic. brain-dead. on-the-rocks. contagious. tumbling. tumult. plate tectonic. shifty. seismic. lightning. bolted. hiatus. jolted. AWOL. jilted. jitters. voltage. eruption. purulent. boils. lanced. embroiled. exploded. blinking. bulb. breakthrough. broken through. shaking. bleeding. shaky. bloody. vicious. Grand mal- petty mal. malevolent. malicious. mal-adaptive. bad. larceny. crook. torched. razed. arson. cooked. Populus tremuloides. shaken. quaking aspen. tremling leaf. shook.

 Aura-  (alright sounding, I guess) trusty warning. premonition. mixed blessing. faithful. shepherd. lambs to slaughter. creeping upward. paresthesia. foreboding. stomach dropping. tide rising. threat mounting. dread swelling. faustian bargain. savior.  beseeching. Jacksonian. marching. mind-over-matter. matter-of-time. ticking timebomb. 'oh no' 'you again' 'shit, shit, darn it' fickle friend.

Absence- blank stare. absent (gone.)

Have i missed anything? (Have i sufficiently flogged this long-dead, heavy-hoofed, hyperbolic, horrort?)


...And HEY LOOK! Brand new lambs!.







Wednesday, November 23, 2022

woop woop /s

I don't believe in jinxes. (I tell myself.)

But I do believe in manifestation, in prayer, in quantum. 

I believe we're mostly dust and clay and a few random elements strung up a lattice of code, spiraling out like yarn from our thoughts and the stories we tell about ourselves; plied together with the stories we accept from the outside about us. Fibers. Looming. The portal on the spinning wheel of existence. The 'orifice' the part on the wheel where thread feeds through from the spinners hands to the bobbin, my sister says it's called. Or something. 

When I came here and posted the police report my intention was to close out the chapter and turn this into a sheep-shearing blog. I still have lots of shearing pictures and stories i'm looking forward to sharing with you.

I'm a poor historian. Has it been a few months now things have been a little off? Not bad, just wonky. Could have strung a yarn or two from it, but mostly just the usual attention-seeking antics and nothing much to report. Gratitude. Then for whatever reason, whyeverthefuck i had the audacity to poke the proverbial bear i guess. Posting here. (Kidding/not kidding, ha.)

Fought the cops again, you guys. Ugh. When I didn't think i could possibly be more embarrassed than i'd already been on this seizure-having journey, i'm, pretty sure i went and leveled up. I should probably explain the whole scene. I remember more gory details than i care to admit. Feck. Am I just mellowdrama? Goodness. Can you see my sweet bruise?



I'm fairly confident with things, but I'm afraid i'll always feel insecure about having seizures. Is it bad telling those stories? It really seemed like we'd come to some sort of understanding, the local first-responders and me. I don't want to be that person any more. I barely have it in me taking on my own gremlins much less fighting helpers. Especially not the strong and strapped and tactical ones. And i'm a whole new level of mortified. What the actual.?

Anyhow, don't get to thinking *this* is my like okay?! Somehow yet another, anomalous, head shake interaction starring yours truly. Like a cringe Ben Stiller movie. Is another one of those play-by-plays going to be hard to stomach? Geeze. See below for footage of my *actual* life (our mom feeding a new lamb at my sister's. [Forgive my awful voice in the background]) and i'll try to muster up the courage to tell you how this last debacle went...


 

Thursday, November 3, 2022

The Catchening Upping

Goodness. You're unbelievable being here, not giving up on me and my musings. Holy cow. 

Life's been good for the most part.

About a week after I last checked in here, which was just after I lost my job at the community center, I ran into some local business owners who I'd worked for previously. They asked if I could use any work and I said as a matter of fact I could. I've been working on their farmstead as a farm hand/factotem ever since. 

They're a neat couple and have taken me in like family. Her father was head of NASA during the Apollo missions. (You could say her family came to the states from Germany on a paperclip after 1940 Armistice, if you know what i mean...) Her husband grew up in South Idaho on a dairy farm and straight out of college got a job working for the EPA and put at the head of the largest superfund site in the lower 48. Working for them reminds me of my ranch job on the river in a lot of ways. 


I dated a guy for a couple of years, an orchardist/pig farmer. It was mostly good. He was a great friend on a lot of fronts when it was nice to have a great friend. We were aligned philosophically on most things, just not big, big picture. (For the record, he dumped me, ultimately.) It took me a little by surprise, but I wasn't totally broken up over it. Ah well. 

And that's pretty much it! Farm hand most of the time and lately we've been sheep-shearing (me and my sister!). I'm fixin to make a whole post about my first run shearing on a crew, but generally i've been pretty bad about documenting the cool places and cute things we've encountered out de-fleecing. (It's a little nerve-wracking. Once we've established ourselves with our small flock customers, and as we get better, we'll be a little braver taking pictures and recording things, hopefully.)

I did get the VNS replaced. They swap out the whole generator, not just the battery. It seems a little different than the last one. I'm still not totally off the fence with this iteration, either, I'll admit, but it's probably a net positive, i'd guess. I aim to make a whole post about it someday. Maybe.

The last couple of months have been squirrely. Nothing totally spectacular, thankfully, save for one public display of affliction in front of the checkout counters at the local grocery store about a month ago. At this point part of me assumes the whole town has seen already, but it doesn't stop whatever shards of pride i have left from being mortified for a while after it happens somewhere busy.

Mostly i'm trying to not be a shite show between now and February. My sister and I have a spot on a shearing crew again. I'm trying not to be too excited. I love shearing so much. Don't think she wants to take me if I'm having seizures, though, so... Ah well.


Guess I need to take the dog out. We're back in the darkness these days, up here. 

Hope you're finding plenty of light to fill your heart wherever you are, dear reader.

Monday, October 31, 2022

The Report


Ran into the former paramedic/EMS Chief out on the street the other day who put the restraint around my neck while i was having a seizure over a decade ago. He was so shrunken and aged I almost didn't recognize him- far from the red-faced hulk man that's taken up so much real-estate in my axious, calamity mind and memories. 

He's since been replaced by the most incredible superhero medic and she's been such solid, unwavering, stellar help, I can only believe God dispatched her code straight from Heaven to Moscow. 

Now that that real-life boogeyman is no longer a factor i'm realizing my brain has latched onto dreading over the next bag of eggplants, and is probably giving him the same sort of undue power and fear. I eluded to this event in my last post i think. Thankfully I haven't been in the hospital many times since, but i'm not sure if this nurse is still there, wanting me ban-hammered from the premesis or what. My sister said there's a new E.R. doc that's chill, so that's great news. Hopefully he can just send me home before I have time or opportunity to interface with too many disgruntled R.N.s.

It was really stressful at the time (more than a year ago now). I was in the hospital after a seizure- the first thing I was aware, my hoodie was being pulled up over my head along with my bra so my whole bare chest was exposed. The hood was torn almost entirely off of my sweatshirt. My hands were being held and twisted up back behind my back in some sort of rear-hold arm bar thing. This dude is to the left of me, in my face, doing all this Krav maga meets playground imp tactics and I'm already fighting him. I remember trying to say something like, 'let go' or 'back off and we're cool', but I'm not sure how it came out. I shoved him away (center mass not face) with my foot when he didn't let go of me. That's when I'm pretty sure he called the cops.

They told me the case was still pending. I tried to get a copy of the police report a few days later, but it was weeks before they gave me any information. (A little nerve-wracking. I'm still not sure what would've happened if he won. If you can get 86'ed for being combative? Would EMS have to drive you to the next town?) God bless this police officer is all i have to say... This is a direct copy/paste of the report, they finally sent me, much to my great relief. (I redacted the last names of the CNAs just to protect their web-presence so anything in the narrative with brackets is my doing).

(Forgive me being such a stranger. Love you.)

02/08/21 Moscow Police Department 1156

10:08 LAW Incident Table: Page: 1

Incident Number 21-M00802 Nature Battery

Address✓ 700 S MAIN ST; Gritman 

= = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = =

INVOLVEMENTS:

Type Record # Date Description Relationship

NM 265002 01/29/21 JACKSON, ALLISON ELEANOR Suspect

NM 342699 01/29/21 [REDACTED], GRACE J Witness

NM 437034 01/29/21 [REDACTED], JACLYN L Witness

NM 450883 01/29/21 INSCOE, BRADLEY G Victim

MI 15141 01/29/21 Watchguard Case Record WG 113

CA 21-006352 01/28/21 22:39 01/28/21 Disorderly *Initiating Call

DS 54455 02/08/21 Allison Jackson PRR/Requested

DS 54366 01/29/21 Jackson PRR/ denied

_________

General Narrative Outline

1. Offense

None

2. Synopsis / PC

Allison Jackson was coming out of a seizure and struck a Registered Nurse,

Bradley G. Inscoe, that was trying to perform care on her. Inscoe believed

Jackson intended to hit him. Two other witnesses described Jackson's actions as

being out of confusion, consistent with a subject coming out of a seizure.

3. Total Property Value(Damaged/Stolen)

N/A

4. Additional Responding Officers

Ofc. Snyder

5. Evidence

N/A

6. Narrative

On 01/28/21, at approximately 2239 hours, I responded to 700 S. Main St.

(Gritman ER) reference a disorderly subject that had became physical. The

dispatch notes stated the subject was Allison Jackson. I am familiar with

Jackson throughout my eight year career due to her chronic seizures. I am also

aware that Jackson is known to become confused and combative when she is coming

out of a seizure episode.

Upon arrival, two ER nurses were speaking with Jackson and indicated they did

not want us to speak with Jackson. I went to the ER Nurse's station and spoke

with a Registered Nurse, Bradley G. Inscoe. Inscoe advised Jackson screamed at

him, punched him in the face, and attempted to kick him while he was helping

her change clothes. I asked Inscoe where he was punched in the face. Inscoe

indicated he was punched just below the right eye, on the cheekbone. I did not

see any obvious injuries. I asked Inscoe if Jackson was coming out of a seizure.

Inscoe said she went from seizing to groggy to throwing punches. I told Inscoe

in my previous experience with Jackson she can become combative with exiting a

seizure episode. Inscoe said he believed Jackson continued to attacked him even

when she was more aware of what was going on around her and described her

actions as deliberate. I asked Inscoe what he wished to have happen. Inscoe

advised he thought Jackson should be charged with Battery. I asked Inscoe if

anyone else was in the room when the altercation took place. Inscoe told me

Grace J. [REDACTED] (CNA) and Jaclyn L. [REDACTED] (CNA) were present.

I contacted Jackson and asked her to tell me what happened. Jackson said she

left Gritman against medical advice previously and returned to be seen, because

she realized she needed medical attention. Jackson said she had a seizure and

when she woke up, her hair was being pulled and her shirt was being taken off. 

Jackson said she was confused, and added that was typical for her when she is exiting a seizure episode.

I contacted [Grace J. (CNA)] and asked her to tell me what happened. [She] said

Jackson had a seizure and her, Inscoe and [Jaclyn L., (CNA)] were attempting to provide

some patient care. [She] said when Jackson started to exit the seizure

episode, she seemed to be focused on Inscoe and struck him in the face. I asked

[her] to describe Jackson's demeanor and she described Jackson as appearing

confused. [She] advised the altercation happened pretty quickly after the

seizure.

I contacted [Jaclyn L. (CNA)] and asked her to tell me what happened. [Her] story

matched [Grace J., CNA's]. [She] described Jackson's post seizure state as confused

and that Jackson seemed 'flipped a switch' and her aggression was directed at

Inscoe. I asked [her] what Jackson's demeanor was prior to the seizure.

[she] said Jackson was calm.

Based on the statements from the above persons and my first hand experience with

Jackson in the past, I believe Jackson's actions were the result of a medical

episode and not a conscious criminal act.

9. Case Status

CLOSED

10. Referred to Specialty

No

I certify (or declare) under penalty of perjury pursuant to the law of the State

of Idaho that the foregoing is true and correct.

Fri Jan 29 06:19:44 PST 2021

S Gunderson 113

Reviewed By:

Sgt. Dustin Blaker #108

Fri Jan 29 15:45:37 PST 2021

Friday, March 26, 2021

3.26

Yay, March 26, World Epilepsy Awareness day, where we collectively tell seizures to eat a dick.

I've been meaning and wanting to respond to comments but my laptop is fooked and I'm a dork at typing on my phone like this. I appreciate your comments and love you all dearly.

I've been a monster of a combative, attention-seeking, drugged out seizure muppet. Pretty mortifying.

I'm marveling. How it went from 4-5 years of staying out of the hospital entirely (save for a broken leg having fun, oops) to my current state of affairs is beyond me. Im grieving the mostly normal life I'd grown accustomed to and plans I was foolishly entertaining for a second there.

I could probably type a flood given a keyboard and an afternoon. At the same time I have absolutely no idea about anything.

Since December I've been waiting to feel something like baseline. Something like solid ground under my feet. (Okay, not *concrete*, but not mire or smagma or quicksand, at least. )

Any time i muster some inkling of faith in the system it seems to get trounced in a jif.

Got myself into a pharma snafu. Failed to ask for the right help at the right time. Didn't want to be going off seizure medications cold turkey like a dumbo, but lo and behold, there i was. 

The hospital was the last place I wanted to be, but, i went.

I *just* wanted one, maybe two doses of fecking generic Trileptal. 

Last I knew I was B.S.ing with a great nurse I hadn't seen in years. The doctor was going to let me call for a ride and let me go home. I woke up intubated having been Life-Flighted to a hospital in Coeur d'Alene.

I'm free now. Not sure how long I was there exactly. Got to see my cousin and her cute kids, so that was cool.

Don't know if I'll ever, ever manage to talk myself into getting help from any hospital ever again. Fair or not. If you could die from embarrassment, I would have, so you can remove that mortal danger from your hearts and minds, dear friends.

I hope you're well. Haven't caught up with your worlds in a bit, regrettably. 

Please forgive my whinging.

Love to you from Wherever the Heck. <3 <3 <3

My cousin's son made me a masterpiece while I was hostage. My heart.



Wednesday, March 10, 2021

Twenty Twenty Wonderment

Seems I put the where? in January. February went better; I remember most of it anyhow. 

My thoughts and sentiments are mostly disbelief. How is this my story? I want to deny all ownership. A silly mix-up. A bad dream. Living under the sword of Damocles- certainly not mine, the life of a seizure queen. 

I was admitted to the hospital three more times, to the E.R. a few more times than that.

One of the hospital stays I was in two or three days, left AMA and remember absolutely nothing. Zip. Nada. Walked home with a poor, concerned, benevolent CNA and a doctor trailing by the sound of it. (Thank goodness I only live a few blocks.) I don't know if it was that time or yet another I'd eloped like a drunken ungulate with a CNA at my heels as I (supposedly) clopped right out in front of traffic on the busiest street in town, capturing the attention of the hospital CEO who witnessed from a short distance. Oops. Now, for better or worse, I'm on the risk management radar. I'm supposed to meet with them soon with an official care plan.

My most recent E.R. visit I was all kinds of blips for the risk management folks; some jackwagon R.N. tried to have me charged me with battery when i was combative towards him coming out of a seizure. I'm mortified. Defeated. Traumatized. After so many seizures in this hospital, in this E.R., after all this time. I thought we'd come to some kind of understanding, but yet again, I'm fighting hospital staff for my life before i'm fully aware of what's happening. Should i tell you what all I remember of it? Or is that just more of my attention-seeking histrionics? I feel like a magnet for melodrama. Good land.

It was too bad. I was so, so SO grateful that up until then all the time I'd been holed up there, i hadn't recalled anything traumatic. I wasn't shackled to a bed. No terror, despair or distress i was aware of outside my own battles against internal torrents. I don't remember any of it, but was told i'd even had an amicable interaction with an E.R. doc that once yelled in my face, "YOU'RE GONNA DIE!!! YOU'RE GONNA DIIIIE!!!", so that was cool.

I crashed all around my house when I got home, whacked out on seizure drugs. About the time I was finding my equilibrium, it was time to increase the dose again.

My mom and dad came. Each of them stayed a week or so. It was a mixed bag. I was grateful. It's good to see them, but it's also hard watching them grow ever more hyper vigilant as their seizure-sitting detail progressed. No Mom, just the dog. ... I'm fine, Dad, i think. Just a crash. I feel so bad. So guilty. Maybe shame, if i'm honest. I know the shame is self-defeating, but it's a monkey of a knapsack i just can't shake. I resented all the sacrifices they made to be there for me. I was sick of constant company with zero alone time. But i appreciate them and love them dearly. 

For a few days I was getting lost in my own neighborhood and hallucinating  and no one can say why. First I saw thousands of ticks and spiders in my house, but later I saw walking trees and a whole band of Native Americans on horseback, in full regalia coming down a hill, so that was interesting.

My friends were/are? basically fighting. One even had beef with my mom. Ugh.

My boss let me go me a week ago. I'm glad she did in the sense i don't want to be more worry than i'm worth, or some kind of charity. Though it does feel like a small betrayal. I wish she hadn't said anything.

I'm considering going on disability. I'm really torn about it.

My VNS battery is low, turns out, so i'm supposed to decide if i'm going to get that swapped soon. I can speak more specifically to that later, though.

I think of many of you bloggers so often, i hope you know. Elizabeth, who encouraged me to write. I think of you every time i see a Mazda; every time i venture baking any sort of pastry or cake outside of my skill set, (so basically all of them); every time i meet a hero parent fighting the system; when i hear and play a whole handful of songs; when i hear anything about Los Angeles. Not to mention a good deal of the however long it took me to get through the 824 pages of Brothers Karamazov, which i really enjoyed and likely never would have read absent your recommendation.

Ms. Moon i think of you every time there's a hurricane or some dude doin something crazy in the news in Florida (so like every day,  ha). I think of you when i hear about them Weeki Wachi springs or the mermaids; every time the whatever-we-have-on-hand soup gallimaufry turns out scrumptious; when i see a camellia, The Stones or Bill Murray, and so much more.

Sabine, I think of you when i ride my bicycle along the river; when i hear anything about Germany (you're the only one i know there); when our mom voices death wishes; when i'm adding music to a post; when i hear of any perplexing vascular diseases; when i hear of or meet anyone in wintery places who can grow things like Meyer Lemons and plumerias; when i hear of anyone on the cortisone/steroid roller coaster; when i'm feeling lonely waging war in pursuit of peace with a renegade body.

I love you all. 

Thank you for your support. 


Tater loves you too

Saturday, January 2, 2021

More of the Same. But Different

Hi, 

How's things? 

My life has taken a few loops and unexpected turns I can't articulate here much further, for now, but i'm grateful. 

I'm a poor historian, but I'd say since I last updated, the seizure scene has been mostly copacetic. I'd guess I've maintained an average of 3-4 months between. I had one cluster, i remember, but even then I was able to avoid the woo-woo bus and the hospital. 

I still have the same part time gig (building maintenance at an event center). My boss has been pretty exceptional regarding the seizure factor. She even called my sister when I had one there once, and helped me get home without summoning the whole brigade. 

My sweet dog, Olive, died. My sister moved out of town. All my grandparents are gone. My leg is pretty well healed. You'd hardly know there's a big titanium rod in there most of the time. I'm back playing hockey, biking and kayaking. And that's life, i guess. 

I learned a lot in counseling. Mostly on my own, granted, in attempt to better understand and trust the process. In any case, I liked the lady, she seemed smart and I trusted her. Then she breached confidentiality. Twice. Absent threat to life or limb or any reasonable justification. I tried to let go. It wasn't anything major, admittedly, but I couldn't get over it, so I quit.

So here i am with another randosaurus report from the nutcase junkshow bunker. 

I can't think of any notable lifestyle changes or stressors. I had low key anxiety about going to the hospital in general, post Rona, i suppose. It was high on my running list of objectives- stay out of Gritman (our local E.R.). And I had great success- check! Until I didn't. 

I was on my bike running an errand. It was dark. I was afforded the luxury enjoyment of a brief debate. The prospect of an extemporaneous bicycle race home against my sometimes fractious, irascible neurons through two busy intersections was tempting,,, i have the brain and body of a prize fighter but i'm not as young or fast or resilient as I once was. I was on a stretch of sidewalk where I knew someone would find me eventually. 

Then I dunno. Not sure exactly why i was transported. My hunch is i was still unconscious when medics got there, and the opportunity to administer drugs and abscond with a sedated, seizure-zonked patient was understandably preferable to waiting around for the whole seizure puppet song and dance to transpire. I don't usually get the whole story, fortunately/unfortunately.

I think my brain tends to spiral in hospital settings after so many fights and desperate-feeling times there. I dunno. I've had seizures cluster outside the urgent care scene, though too, so who knows. 

So whether I needed to be there or not, there i was. It's my understanding none of the seizures were particularly severe or prolonged. I don't remember any part of being in the ER. I don't think I remember anything on the hospital floor until the second day. 

Praise Jesus for a phenomenal hospitalist; i was able to leave that night.

My friend was able to stay most of the duration, thankfully, it sounds like, and has since helped me piece together some details. Not lots but some.

I remember taking out my I.V. toward the end. I don't remember feeling brash about it, just done, and resolute in my decision to vacate the premises. I don't remember what precipitated the verdict.

The hospitalist came in and talked to me extensively. Like a really, really long time, from what I recall. Ack. She must have been adequately placated, though, with whatever promises I made to follow through with the freshly drafted pharmaceutical game plan. (Sure. Maybe. We'll see. I'm trying.) Barf. In any case, she let me free.

I remember eating beef stir fry that tasted good. (It was the only thing I'd eaten, apparently.) I remember looking for bed alarms to disable and realizing it was an I.V. drip machine squawking.

I don't know why anyone is so nice. I feel like a colossal waste of resources. 

I just come crashing onto the stage like a wind up monkey bashing cymbals together, and disappear again. I don't deserve the care and concern I've garnered here or anywhere. 

People rallied around me. People I hadn't seen or heard from in a while helped coordinate care for me my dog and my bicycle.

I was gross. I'm always so gross. Doomed, infernal white bed sheets. I wasn't shackled or restrained to the unit in any way though, hallelujah. I kind of remember talking to my dad on the phone. I thought I saw my sister, but it was only Tami they said. Ah, well. 

So, however it all went, it wasn't overly traumatizing. I feel a little bit gas-lit regarding my lived experience on versus off antiepileptic drugs ('Anti- epileptic' drugs.  Isn't language, funny?) But oh well. I don't deny science. I understand action potentials and most of the proposed mechanisms of action; I'm just afraid they're overly simplified heuristics is all. Even they admit the exact mechanism is unknown for most of the anti-seizure medications.

I'd quit pharmaceuticals entirely for the better part of a year without any notable repercussions. Yeah, yeah i hear you, I'm just trying to eliminate my reliance on as many criminal, enterprises as possible these days, okay? 

I wasn't in a bad place mentally. I'd made some great friends working a regenerative style farm. I'd identified some of my flawed thinking and schemas and recognized healthy and unhealthy attachment patterns in therapy, so my relationships seemed to be bearing the fruit of that. 

I don't remember feeling particularly stressed until getting out of the hospital. Hopping back in the saddle on the western medical pony is giving me anxiety. I'm sure the new primary care docs in town are perfectly lovely, and the local neurology options are much improved. I just can't get myself excited about them. Sorry. I want to feel something other than 'over it' already, I do; I'm just failing at the moment. Wish I were better at just going along to get along.

I asked Dr. Brown if she'd chart i was faking or that I told her i was, at the very least, so maybe they'd hold the phone on the benzos. Hold the phone on everything.

I'm grateful, don't get me wrong- overwhelmed how people just deal with me all my associated biohazards and antics before I'm even cognizant and thereafter. I'm wildly impressed and humbled by that. I dont care much for the system but the people are wonderful.

Do I need help? Sure. Do I think the Rockefeller deathcare mafia system is, this time, for once, prepared to render that to me in my shiny, new, combination therapy, big pharma prescription deal? Eh. 

Do I believe marinating in a hospital setting after seizures is the best recovery policy for me? No, afraid not.

Do i think my people are amazing, that people, in general are amazing? Totally

What do you think, dear reader? Of my half-crocked strategy to tell them, many thanks, but i'm a faker. Please unsubscribe me from your service. ? Honestly I remember so little, I could be faking. At least I can't rule out concomitant dissociative seizures, certainly. I won't make mountains out of, nor deny real trauma I've been through. So there.

Just seems no way an otherwise normal, healthy person like me could or should have so much trouble with this. I totally get how the demon possession mythos became intertwined and persisted with epilepsy. Sorry. I feel gremlin infested. I'd buy that.

Just tell me the new, properly metered incantations 'ox-car-baz'ah-pine', 'la-mo-tri-gine' will channel the benevolent  pharmakia spirits equipped to rescue me from the jowls and bonds and bowels of physical and spiritual possession. 

I've tolerated both of the drugs independently, at one time, so hopefully that bodes well. Ugh. I'm sure in a week the side effects will vanish and we'll be blissfully on the road to seizure freedom. That's how this all goes, right?

I don't want to be obstinate or lazy and have everything erupt like a spectacular, purulent infection, making an even bigger, smellier mess of things. I don't. But I really, really don't want to get back on the roller coaster of new medications, new doctors, and the bloody rest of it, either. I don't want to be such a royal waste of resources. I just want to be left alone. Pretty sure. Yikes.

Besos. Abrazos. Best to you, adorable reader. Thanks for being here.

Alli