Wednesday Eve Moment of Zen

This was a quick evening kayak excursion after work last week. (Sorry, i don't have a mount for the camera so i was just holding it in one hand and hand-paddling with the other. And i don't know why the audio is absent at the beginning and comes in at the end, and same with the slow motion, but whatevs.) I'm pretty sure things are going to be okay. 

It's a little over two months right now to get in to see the PA to have the VNS device checked. I probably could express greater urgency, but meh. I have these perfect, flat magnets i can use to turn the motherfucker off in the event i feel like my heart is going whacky and i need to eliminate that as the reason. 

I kayaked and played hockey and while i'm still wicked tired all the time, i didn't drop dead of a coronary event or anything. 

My April fool's weekend was another delicious couple of days on the Lochsa along the Selway-Bitteroot Wilderness and even still, i feel taut as a drum in my chest. I'm surrounded by golden, crepuscular bursts of radiant spring light, new leaves, vibrant hues, emerging victorious blossoms, hope, fresh growth, rain kisses sparkling on clean earth, exuberant bird songs, rejuvenating rivers, and a million other omens of yes! ... yet, i'm a shrew. Uneasy. Keeping my bumbershoot open, not so much for the spring rains as for the seemingly ever-imminent, god-forsaken, other shoe.

Right now i don't know if it will be a family member, something global, a big seizure, something stupid with cannabis legislation or my own vulnerable cannabis-dependent situation, or what, but i have an awful sense of foreboding. It will be okay, ultimately. It will be okay; i still feel that to be true, but what's impending that has me so edgy i wonder? Maybe i'm high (likely), but i don't normally feel like this. I'm pretty sure. That i can remember. Well, maybe i am 'Always-Something-Allison'. Shoot me now. Gah. Don't. Sheesh. 

Love you. 

Night. 

Everything's going to be alright. Eventually. I promise us.

Spring Sprang Sprung

 

It was a beautiful weekend. We rang in the first day of the season in vibrant, springish, dare-i-say glorious fashion. I love my boys.

And then, of course, there was kayaking. I'm hoping to whip up a post about additional safety measures to allay some of the risks for seizure-having kids and people like me partaking in sports like kayaking. But later. For now, just know they exist (and undergoing continual development). 

It's running at a friendly level, and it's a 'pool-and-drop' river, so after the rapids there's a nice calm pool to regroup and collect any swimmers, boats or gear. By our best accounts and figures, my typical 3 or 4 minute warning before a seizure should be adequate on this stretch, at this flow, to (whistle/signal, for starters), and find a spot to stop on shore, or at the very least eddy out and pray for the best... (My guys are rad, is what is boils down to, not to mention my buddy Marissa who joined on day two and kicked ass on her first Lochsa lap ever!)

Behind that awesome clump of cedars was my
very favorite pee spot of the weekend.

How rejuvenating right?! You could almost cure sepsis just looking at that emerald green water. 

Well, despite the auspicious beginning, i had about three more posts i'd hoped to get to, ('Fun at the Idaho Caucus', for one), was supposed to play three hockey games last night in our end-of-the-season tourney, then venture out afterwards to catch up with my good friends visiting all the way from Corvallis. But instead my plans have been supplanted with feeling like dogshit. I'm dragging ass, even though by my recollection i've been sleeping and doing everything else as usual. 

I went to donate blood, (It's been scheduled for months, and i need all the easy karma i can get.) and even though i forgot to eat my cream-of-wheat, my iron was good. So i was stoked. Then of all damn things, i was deferred because my pulse was too high. I'm not at my peak swimming fitness, i'll admit, but my pulse was over 200. Ten minutes later, despite my best attempt to deep breathe and open a six pack of calm, it was higher. (How i hadn't noticed my heart was racing sooner, i haven't a clue.) In the days since, it's lower three out of four times i checked but still zooming intermittently. (Not quit my normal baseline, but 'WNL'. My pulse is usually mid 50's while marinating in the hospital setting.)  

Is it the VNS? The maude reports are full of weird cardiac problems and events. Maybe the battery is starting to shit the bed? I don't really want to go all the way to Spokanistan to be told i'm being a ninny though if it really isn't anything. I'm in between GP's right now as mine has gone off to specialize in bariatric patients exclusively. She's fabulous. I'm ready to gain a hundred pounds just so i can see her again.

Anyhow, that's a pretty junk ending to what started as a niceish post. A roller coaster week for lack of a more inspired analogy. When the hockey schedule was posted i'd hoped to sneak a morning lap on our local river before our first game today, but i'm going to re-up on NSAIDs and go back to sleep instead. Little crab fork headaches, nothing compared to the kind post seizure, have accompanied this weird, unprecedented malaise. And does 'nothing grows in anger' apply to everything except seizures? Or do i feel angry on account they are imminent? Even small ones that may or may not have definitely not happened this week...foof.

Salt Mine Tour with O-town

Do you ever send things back? (I don't, not because i don't intend to, but because i'm a terrible adult.) Have you ever thought about the automatons who open that shlonk, slang the refunds and return anything suitable back to the shelf? Well that's our jam now. Olive and i moved from picking after a year and a half and i'm now co-managing the Returns/Warranties and Repairs Department. 

I used to repair rafts for a different raft manufacturer, so i had previous skills to draw from there. As far as training/coordinating and supervising other people, well, if i had the option to take the pay cut and not be in charge of anyone, i'd leap at it like a Jack Russell after a peanut butter bacon Frisbee. (I'd known this about myself, but alas!)

The returns detail can be both entertaining and challenging. Even though talking on the phone and negotiating sometimes marshy warranty territory doesn't play to my strengths exactly, (I didn't get the phone-talking gene; i was not that teenager.) it's nice to be able to wear more than one hat.

And people are nuts, there's that. Most days i'm reassured maybe i'm not the nuttiest nut brain out there, or i'm amused at the things people say or do. (Maybe river people are a particularly quirky subset of the population.)

Repairsatopia

Here's where the repair trolls hang out. We fix drysuits and drysuit gaskets, manual pumps, electric pumps, inflatable SUPs, inflatable kayaks and sometimes rafts. We just got a new shiny hood so we look all legit now. (We sort of had a hood before, but it was really a couple of no-longer-functioning computer fans that used to vent fumes up to an upper mezzanine. In the heat of the summer pickers would have to go up there for merchandise and get blasted with Tolulene and 100°+ F/40° C heat.) So grateful that has improved.

The chartreuse Medusa mess coming out of the trash can is masking tape. (I'm a dirty hippie, so i save and reuse it until the stickem's all gone.)

See how lucky? Getting paid to play in a magical box castle is quite prossibly all my wildest dreams come true! The racks are suits in the queue. We're pretty inundated right now with all of the fire departments and boaters gearing up for spring runoff. (Each suit takes about 2 hours and there are probably 70 suits hanging in waiting with more arriving daily.) There are a few college students who come in for a glue fix a few times a week so that's generally helpful.

180° From Repairsatopia is Return Central

 

This is my station. That table behind the chair is the one i smashed my face into a few weeks ago. We have a really nice climate-controlled call center on the other side of that wall, but i'm content being out in the box fort with rest of the riff-raff.

It's a good place to work. (It could be a great place to work, but i'm a toad and we won't go there now!) We're sort of the Wal-mart of paddle sports. We've outsourced almost all of our production. (Our raft frames are made here and most of our rafts are made in Mexico but most everything else is manufactured overseas.) Thankfully all of our customer service and marketing has yet to be contracted-out elsewhere and likely never will. 

One neat thing is that we're employee-owned. Though it's easy to wonder, after seeing defective things day in and day out, if you only have a stake in a ship that's actively sinking. Yet we seem to grow every year, and my understanding is we've almost paid off a huge debt to the bank that was incurred for some reason in the employee-ownership transition.  

Welp O-town is pooped. Admittedly i've only photographed a fraction of the whole she-bang. Looking beyond Olive is only about a third of our main facility. There's heaps more warehouse not pictured behind me, a half dozen pack stations, more bay doors, rows and rows and rows and rows of shelves and boxes, a rope and material cutting station, our admin offices and a small front retail room where people can shop locally. We have one more huge warehouse in town and a big aluminum-sided frameshop building across the street with big drill press-a-ma-jigs, saws and metal-bendy tools and things.

Some days my job can be tedious and doesn't allow for much in the way of artistic license. Thankfully i get to listen to music! By all accounts and figures i should be totally sick of First Aid Kit, but i can't get enough of them: 

If you have more time on your hands:

If I had a Heart, it Would Probably be Here on this River...

We have an awesome PBS program here called Outdoor Idaho. This episode features a few of the places i've had the joy of working over the years along the river (China Bar, Buckskin Bill's, and also rowing a few trips for Mr. Johnson and many other outfitters over the span of 13 summers). I spent a majority of my time at Shepp Ranch which is featured around minute 44 and my cameo is at minute 48. (The embed code might be kind of wonky, so it might work best to watch it on their website.) I'm a total dork and a ninny and i really hate my recorded voice! (I don't think i up-talk in real life. <egad> I hope not!) But i'm heartsick for this place right now. I'm scheming how to get back there this summer... Happy Sunday you beautiful people.

Edit: Alright, who's coming with me?! For reals, i probably can't coordinate a full lodge-to-lodge, but we'd camp on some beautiful white sandy beaches, and there are no mosquitos. Some years we have a few yellow jackets late in the summer, but for reals. It's delightful.

Also, if you watched the whole video, Steve Gale speaks a few times, and i just have to tell you, he is a gem. He sleeps on a cot under a table cloth. He brings along fairy-sized tokens and implements on trips with kids and leaves them out near their tents and around camp to pique their imaginations. 

When we get off the river we spend about an hour or two at the ramp unloading boats and gear and loading them onto a trailer. Then we go for one last swim, sardine into the pickup and drive 9 hours back to headquarters. (If you come, we'll hook a ride back on a jetboat.) We usually don't pull in til 1 am. We all stumble out in the dark and hope our sleeping pads and personal bags haven't sifted themselves too deep in the pile. Once we find a flat spot we pass out until reconvening at 8 am for the de-rig, de-sand, sanitize, etcetera. 

One of these mornings we all coffeed up and slowly ushered our tired bones and steaming cups down to the boathouse through the grass wet with morning dew. Confusion. The trailer was empty. (We have a kitchen box over 250#s and rafts that are about 220. And that's no wild exaggeration because they're weighed routinely for flights into the backcountry.) Anyhow, that sweet, teddy bear, crazy SOB, Steve had unloaded the whole thing by himself while the rest of us were scratching our posteriors and Moe, Curly and Larry'ing it up at the house trying to find coffee.

I don't think they show Heinz' wife Barb, but she spent a winter all by herself on the river in a teepee. Heinz had gone back to Germany, and they wouldn't let him return to the states with his current visa.  They're legendary.

If any of you make it to Idaho any summer with a week to spare, i will happily take you down the riv! Generally trips are 5-6 days, but there are other sections we could do in fewer. You'll love it, i promise; it's awesome.

Also, i can't speak more highly for the folks who create the Outdoor Idaho show. We didn't know they were coming, and hay hauling days are some of our busiest. All of our cabins were occupied with guests. We initially told them we weren't going to be able to give interviews. I can't remember if they stayed in our bunkhouse or if they camped on the beach, but i know they stayed an extra day so they could find times to track down the harried cast of the incredible Shepp Ranch. They were so gracious and easy going.

Quite Possibly the Biggest WTF Moment in my Entire Epilepsy Career

Okay, it's been going on five years since this happened, but i've recounted it (more than) a handful of times, and it seems burned vividly into my memory, so take it for what you will.

I live in a college town. While it certainly isn't a major metropolis, you might think this would confer some general competency as far as first-responders reacting appropriately to any common medical complaint. Not so! I'd be giving these folks the benefit of the doubt, were it not that so much of their questionable conduct had been right in front of friends, coaches and family members. 

One police officer had his taser drawn threatening me when i was still regaining consciousness after a seizure. I was on a gurney struggling instinctively against the belt splinting my arms to my sides. Stop fighting or I'll taze you!, he yelled. I was with a spitfire friend at the time who only just barely got him to relent after much pleading and explaining the many reasons not to taze me just then.

My mom went to the police station with me later that week. He was a decorated officer, so they just hung my picture on the wall with a note and told him not to use his taser next time. 

First-responders have piled on top of me in other instances post seizure. My hockey coaches were with me once when this happened. One of them works with kids with disabilities and is familiar with seizures. They were able to get the boys in blue off me before my post-seizure reptile brain spiraled into fight mode and grappled with the lot of them. In the process, my coaches nearly  ended up in handcuffs and/or in fisticuffs themselves. Thank God for ferocious advocates. 

I'd never heard reports of my having been combative until i moved here. There were times apparently though, i fought them for hours. I never remembered any of it. It was like my brain wasn't able to recover itself once it got stuck fighting in that state. Has anyone else experienced this? Again, it's only when someone is holding me down as i'm regaining consciousness after a seizure, otherwise i sleep for as long as the universe permits, i think. 

Anyhow, despite all this, you'd think these would have to be the most inappropriate responses to seizures i'd ever experienced. Nope! My last bit of framework here is that about two or three months prior, i'd had a seizure in the back of an ambulance. An EMT who happened to be a friend of mine and a friend of my family's got her finger smashed and broken between my foot and the rail of the gurney. I was mortified to learn of this later as i recovered in the emergency room. Enter: Chief Dave, one of few paid employees at our local fire department.

"Just so you know, my crews will be instructed not to intervene with you until adequate law enforcement is on scene. Thanks to you, one of my EMTs is in getting X-rays right now."

Super M, we'll call her, my five-foot-none superhero nurse swooped in and verbally drop-kicked him out the door of the room that was still spinning a little around me. I was too dazed to respond to him, but I was mortified as his words registered. I felt despicable. A monster. Dangerous. The new policy though, i'd welcomed - perfect! I've been trying to get you guys to leave me alone for *years* now. I worked with dispatch, with the overseeing medical doctor, the police department, and let me tell you, to get any one of them to call any one of 6 or 7 adult, blood relatives I'd had in town at the time, must take an act of congress. I'd conceded to the fact they were going to show up, and they were going to transport as they saw fit, all i'd hoped for was an advocate - someone there looking out for my best interests.

Flash ahead a couple of months. I was on campus, stuck in a partial seizure. My right hand and arm jerk against my control. The muscles on the left side of my face twinge and ache and the repeated twisting of my neck starts to feel like  worn, tired ropes on the opposite side of my neck. It doesn't hurt, but the sensation strains like the pulling of a bow against the orchestra of self-consciousness, helplessness and shame that I'm usually unconscious for when the seizure progresses all the way. I couldn't speak. A professor of mine noticed my irregular behaviour in passing and i'd failed to reassure her concerned inquiries, so even though i probably could have made it to the hospital five or six blocks away, i understood and fully appreciated they weren't going to let me.

By the time the ambulance arrived I'd been stuck in the seizure for close to an hour. I was eager and in full agreement, yes. Let's go. Dave is the medic. Whatever. It's five blocks. Let's go. He's talking to me, "You're having a focal-motor seizure, Allison." I agree, Dave. I'm glad we got that all cleared up. He wants IV access - understandable, if not expected. I'm perplexed, though, when he posts himself up on my right side. (The one i can't stop moving.) Then, he asks me to hold still. I'm at a loss. I hold out my other arm. I try my best to gesture. 

"Hold still, Allison." Is he joking?! Then, "You're going to hurt someone again." More than once he repeats this as if I just simply don't understand. Im tearful, enraged and when he breaks out 4-point restraints, I'm beyond disbelief and utter defeat.

Never mind you should never restrain a person having a seizure. Fine, whatever, if you can't see why restraining somebody in any type of seizure is a bad idea, i have little hope for you. Fucking whatever dude. Here's where you might think it couldn't possibly get any stupider in the span of five blocks to the damned hospital. Nope! He proceeds (somehow) to place one of those restraints around my neck. Every time my face jerks, i choke myself out against it. I have a VNS device with leads attached to the vagus nerve right there (about 2" below the left carotid - you can see the 3 bumps from it in my profile picture). Damage to those leads or that nerve could be life-altering, i'd guess, as it provides feedback for the diaphragm, the upper digestive tract, the heart and vocal cords.

At this point, i was terrified in every sense of the word. I felt acutely vulnerable. This can't be happening. Mercifully, one of our rockstar campus police officers (also an EMT), Cpl. McIntosh, had followed in a squad car and was right there as they'd opened the ambulance doors. "What is going on?!" She rescued me. 

I was too shell-shocked and dumbfounded to have pursued anything absent her insistence and subsequent intervention. Afraid of any further WTFery, or retribution, i was inclined to let it lie, despite my being angry and horrified. She set up a meeting with the fire chief. She even came with me and sat on my side of the table as we explained our grievances. 

Dave still has his job, but all of our interactions henceforth have been cordial, professional and non-traumatic. I'm forever grateful to the police corporal, who might inspire me to stand up for myself again, if need be, in the future.
Strange, though, right? Some say EMS is a calling; i think Dave should've let it go to voicemail. How bizarre to go into a field like that and to treat someone that way. Do you think he truly believes he was doing the right thing? (How scary.) I'll never understand what was going on in his head that day.

Captcha :oPut@s!

Dudes! (Sorry, i know - i was raised by Ninja Turtles in the late 80's/early 90's, what can i tell you?) What a delight, the new Captcha is. I am not a fucking robot! Praise the lord! Hallelujah.What a relief. All this time, i kept failing those tests. I was so worried!

I'm off to play a late night hockey game with the croup (and the hot-and-colds and body aches) on account everyone else is sick too, so there aren't any available subs to skate. I'm half dressed (equipment-wise, for my fellow gutter-brains) in big hockey shorts and shin guards and trying to talk myself into throwing my big bag on my back, grabbing my stick, then hopping on my bicycle. What a harebrained idea this is. ... but i am a hockey addict and i do love my team. Gah! Tallyho!

Also, (yes i'm procrastinating, my sister's working part time at the rink. She gets to drive the zamboni! How cool is she?!) Alright - goodnight wherevers ya be!

Adulting is Horseshit

My friend Dane scouting our line at Shoestring Falls on our way to a stellar December kayak szechuan 

I'm angry. I should be incredibly grateful, but for the last 2 weeks i've demonstrated the emotional maturity of a pre-pubescent T-rex at the jungle gym. Outwardly i'm depressed. Inside i'm throwing a tantrum. I don't think it's very healthy.

Hm, since i last blogged things have been pretty good. I should keep better records but by my off-the-cuff recounting, i ate shit in aisle 47 on or around Valentine's day three years ago, and that was the first seizure at work that i blogged about. I'm still not sure who found me that day. 

I don't think it was more than a week later i was at work again and couldn't get away in time. In a lapse of judgement i ended up in the bathroom. I didn't get hurt beyond the shame and tongue biting. Considering the venue (en el trabajo y el baño), I don't remember it as being a very traumatic episode, as far as they go. The co-worker who found me was kind about it on account, she told me, she'd dealt with her mother having strokes when she was young.

I might have had one more around that time where i almost made it home. I don't live very far, but it's a fairly busy highway. I was fine, albeit a spectacle, as i was on or near the sidewalk with a helmet on, and fortunately Olive stuck right by me. I broke a tooth, but it was my favorite ambulance crew, and they quickly loaded my dog, bike and trailer into their rig and brought us home.

From about then, I went until New Year's 2015 and whatever happened that night landed me in the neuro ICU. (...an hr. and a half away from my hometown for nearly a week. That's probably a schmegshow post of it's own).

Yhen, I ended up in our local ER not long after returning to work from that debacle. My seizures tend to cluster, not necessarily back-to-back, but buy one, get one or two free for the week.

I don't remember anything leading up to that seizure. All i know is they found me in the middle of the road. My EMT coworker said she dumped about 8-12 ounces of blood and clots from the hat i'd been wearing. They dragged me in, but there was a doc i hadn't met before working (imagine that) and she was phenomenal. My sister was there, so the doc stapled me back together, and instead of going through all the CYA CT scans, B.S. and associated radiation, she consulted both of us like real-life, cogent human beings. Satisfied, we were glad to be released on our own recognizance, and we sachet-ed out the door.

... 

I don't know what my stupid problem is - why i'm bound-and-determined to fall most in love with the things i should never do. Kayaking's like surfing though - the rush and sensation are unlike anything else. I figure so long as my friends are fully-cognizant and, if my state is prepared to re-issue a driver's license, after 6 months, i can que será a little kayaking. Right? So... i guess i've been dabbling. Okay! I'm obsessed, i'll admit it! Don't tell my dad!

Kayak surfing in my yellow boat! 

We're posed to have a great runoff this spring. (Naturally.) I'd been getting out at least every-other weekend this winter. So lucky. My love affair with rivers and mountains has been re-kindled in the recesses of my capricious fucking brain.



Then, two Tuesdays ago i was at work. Olive was off somewhere else, ha, so i didn't get the benefit of knowing more than three or four minutes in advance. There was a newer guy sitting at the station directly across from me . I remember standing up with every intention of saying something, then i had a flash of my head splatting on all the surrounding concrete. I sat back down in my tall work stool, but by that time it was too late for me to clearly articulate anything.

My right hand bounced above my thigh. As soon as i felt my body twisting and my arm rising and jerking simultaneously towards the wall, i knew it was over. The twitching on the side of my face surged towards the kinking in my neck. Some moment just after, i yelled and slammed my eye socket into the raw corner of the wooden table behind me. I woke up and my face was warm, my lap was wet and my tongue was freshly hamburgered. There were no fewer than 32 people surrounding me, but thankfully, they let me sign and avoid the costly trip to the Emergency Room.

Lochsa launch ramp - Fish Creek 

It's raining right now. Everyone's going out this weekend. I don't want to make a reckless decision that my friends have to endure for the rest of their lives, (they did invite me, which is really, really nice. And being WFR an swiftwater rescue trained, and from the extent of our discussions, i have to think they fully ascertain the consequences if something did happen.) I don't want to be selfish, but holy Lord i want to go! Gah. Isn't that infantile? I should be counting my blessings for having been able to kayak period, but it's all i can do not to stomp my feet and "Whaaaaaaaaaaaaaaaaaah" ala Lucy. I'm thirty this year, but my land, this whole adulting thing is horseshit. I just want to throw a tantrum, run away from home and  go play outside forever.

Our magnificent playground 

13 People Describe Living with Epilepsy and without using forms of the word 'poop' *more* than 3 times, i do too

There was an article posted about a month or so ago on Themighty.com where 13 people were asked to describe living with epilepsy. 

Here are their takes:

1. “It’s like having an earthquake going on inside your head, with the epicenter always in the same spot. The only question is the magnitude and how far it will be felt.” — Cindy Platt Hanlon

2. “I’ve had difficulty explaining my seizures to people because seizures mean you’re unconscious and therefore unaware of the entire experience. I recently took my partner with me to the doctor to tell what she saw. Together we were able to do a pretty good job.” — Eugenie Margaret Macfarlane

3. “[It’s] like waking up in a place where you did not go to sleep. ” — Christopher Simmons

4. “Epilepsy is like sitting on a time-bomb, just waiting for it to go off at any time.” — Lara Houlihan Ashmore

5. “Fear, constant fear of the unknown. Fear that any time, any moment, you could get hurt or hurt someone else. Your stomach gets in knots, you become very anxious. It’s like someone or something is taking over your body for a few minutes, doing what they want with it, and then you don’t remember what was done. You can only pray you come out alive or not hurt.” — Stefanie Herdman

6. “My son once described his epilepsy as ‘his brain having a wild party without inviting him.'” — Maureen T. Stemmelen

7. “I used to tell people I’d hear a loud humming noise in my head and that my vision would get ‘fuzzy’ (like a TV channel would get when the cable went out).” — Dennis Carlson

8. “Epilepsy is like an onion — it stinks no matter how much you try to pull away from it, and it is often tear-inducing.” — Alexis Nicole Hymore

9. “I talked [to my children] about how the brain receives and send messages to other parts of the body all of the time — the brain sends a message to your lungs to breathe, your fingers send a message back to your brain to say they’re cold, etc. When my son has a seizure, his brain’s messages get a little mixed up and cause his brain to stop receiving messages (that’s why he can’t hear us) and sends out wrong messages. I tell them because his brain can’t receive messages, it’s important we take care of his body during a seizure, for example making sure he’s not near something hot that could burn him.” — Vera Chenault

10. “[It’s like] the brain is a computer and epilepsy is the virus. The epilepsy virus causes the brain to reboot, so please stand by when a reboot is in progress. There is no way to remove the virus so it needs to be quarantined (medicated). Please stand by as your doctor (the anti-virus), is working on the removal process.” — dhbepilepsy.com Facebook page

11. “Imagine your brain has a bunch of light switches. Normally, your brain works with your body, and when you want to move your arm, for instance, a switch is flipped. In someone with epilepsy the brain stops talking to the body and switches get flipped without the person wanting them to get flipped.” — Jolene Kristovich

12. “I usually just say it’s like a lightning storm in the brain.” — Onyx Song Jat Sharif

13. “Take files out of a file cabinet and throw them up in the air. Now put all the papers back in the right file folder. That’s what happens when I have a seizure.” — Doreen Langley

I can mostly relate to all of these descriptions. I've been pouting the last two weeks. I don't mean to be negative, but i'm pissed, crestfallen and dejected. Fuck this shit. Iknowiknowiknow there are worse things. And Lord knows i've been off pretending like i'm a normal person practically. But here i am again. In all my freakshow splendor. (Forgive me fellow people with epilepsy, and/or loved ones with epilepsy; I, personally feel like a freaking freakshow.) Ya no real progress on the being-equipped-for-this-shit front either.

Uncontrolled epilepsy is like regularly entering hostage negotiations with a terrorist; you are the hostage. *And* the terrorist.

It's walking on rugs every day knowing someone is poised to yank one out from under you. After a significant time without seizures, it's like you're Jasmine or Aladdin and that bastard Jafar is shooting down your magic carpet like an ISIS warlord with a mounted machine gun and a speeding, black-flagged pickup truck.

It's like playing real-life shoots and blooping ladders, all by yourself.

Someone Deserves Credit for this Image. Sorry.

It's like having a monkey that's always on your back. And also that monkey has a relapsing case of explosive IBS.

It's like being mugged by a faceless assailant who steals your dignity, your driver's license (and various matters of independence), your family's peace of mind, your sense of security, a host of career and adventure prospects and opportunities, your memories, your energy along with your capacity for focus and concentration for the week, and, in turn, leaves you with a heap of medical bills, dirty trousers, awkward looks, headaches, and a bunch of pill-filled, orange and white-topped maracas to celebrate.

It's having a razor-thin tightrope and being expected to proceed as normal while maintaining the fine balance between living fully and mitigating the seemingly endless potential risks of life while epileptic.

It's like being grounded or serving probation for something you did or that happened to you while you were sleeping.

...