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

Sunday Drive Home (Photo-loaded)

Whitebird Idaho, site of the battle of Whitebird Canyon (Chief Joseph) 1877

On Sunday, i joined a convoy of Thanksgiving Weekend pilgrimage-ers and meandered and weaved our way like a needles through the quilt of Idaho mountains and farmland and countrysides. For us it seemed like a lot of traffic, but it was probably sparse compared to most places. 

I hooked a ride over the internet from a kid i'd never met before. It's chancey; it's a pretty long drive so if you end up with a dud, it could be a miserable 5-6 hours. 

My ride was a scrawny, pale, protestant-meets-punk-looking dude from Star, Idaho which is a rural, conservative farm town not known for it's surfeit of scholars and worldly thinkers. He sported a Yankee ball cap and a rudraksha bead bracelet; I didn't really know what to expect. 

It turns out he's a sociology major looking into a job in disability advocacy. He works at a women's center.(!) He was a fantastic conversationalist. We had great time shooting the shit about everything from politics, family dynamics, psychedelics, music, the Apolcalypse, beer, literature, vans, pets, religion, post-college plans and hunting. 

We were treated to an awesome sunset that seemed to go on and on. Some low-hanging clouds looked close enough if only i could Go-Go-Gadget Gumby my arm out the window and snag a clump of spun sugar right out of the cotton candy-pickin' sky.

 Sorry if it looks like the same photo over and over again. I couldn't decide. Decision making no es mi cosa favorita. Overandout. Love from Idaho.

Vandals, Hockey and Lucky Buddha Beer

Idaho Vandals
Wenatchee Hot Autumn Ice Champions
(I'm green helmet, my sister is maroon)

This weekend was a riot. 2 days, 10 ladies (girls/women what have you), one hotel, 6 dogs (Thank you, Travelodge.), 8 hockey games and well, maybe a few jello shots. This picture was taken right before we were awarded the championship trophy. I didn't get a picture of it, i guess, but you'll just have to trust me, since it really matters not.

I'll pitifully admit, though, there have been times over the last few years where ice hockey was one of the few extra-curriculars that did matter to me. Other things may have been higher on my list of priorities, but in terms of what i enjoy most and cared to devote the most energy towards- hockey, definitely.

I'm an addict. I love the speed. When you connect with a teammate it's fluid, whiz, snap, blam, swoosh, ka-ching in rapid succession. Fun meets finesse and intensity. Plus, the sport is sprint interval training in sheep's clothing. Well, bulky pads and helmets, but you know what i mean. Really, the rink is an icy stage for a bunch of electrified meat bags with skates and sticks, chasing a hunk of rubber around, but i'm okay with that. It's a blast. 

The camaraderie and community at our ice rink is first class. We have teachers, cops, doctors, students, kids, moms, engineers, bar tenders and old fogies that play. It's a non-check league, so it's less goony than the hockey you see on TV. It's surprisingly low impact. I know a lot of skaters who can no longer run. My sister, for one, would go crazy if she didn't have hockey during the snow mounds-in-the-bike-lanes season. 

Lucky Buddha beer- 2 hat tricks

I didn't sample any jello shots this tourney (mostly because i don't drink much and also because somebody had the terrible idea of making them with Everclear), but i did indulge in one of these beers i found for $1.89 at a nearby store. I highly recommend this light, tasty, Australian-brewed lager. I hate to endorse non-local purchases, but it's fun, and delicious, and dare-i-say may be worth making the exception if you see it around. 

I'm not saying you're gonna score two hat tricks and a bundle of goals if you drink it, but preliminary evidence suggests that you could. 

It was amazing feeling so good again. My ability to be successful on the ice is so positively correlated with more freedom from seizures and side-effects; it's frustratingly apparent when things are off, which tends to be more often during the winter months. Quick reflexes and  bursts of energy are diminished if not depleted entirely in battling seizures. Life is diminished battling seizures. And they're all quintessential to the game of hockey. 

It was beyond satisfying and enjoyable playing on a line with my sister and slinging the puck into the other team's net like the defense was made of Swiss cheese, time and time again. I loved it. We're competitive, it's silly.

I'm still whispering and tip-toeing, but so far it's the best November i can remember. Thanksgiving can be a nightmare on the seizure front. I'm hitching a ride down to my mom's. It's the first holiday since the separation. We'll see how it goes. If i survive, perhaps i'll take a minute to recall some of the holiday disasters my family's endured. Does your family have those? I reckon we all probably do. 

I'm grateful for all of you here and for all you share and for this community of caring and learning and resonance. I don't deserve such a platform or any sort of readership, but i sure as hell appreciate it. Have a safe and lovely week. Whether you're celebrating Turkey day or not, i sure hope you find yourself well-fed and surrounded by friends and family, and maybe a glass of wine or a Lucky Buddha beer. Also, if you find yourself in the unfortunate situation of being surrounded by jello shots, i sure hope, Dear Lord, they are not made with Everclear. 

Cheers! 

Ugh and Pictures

I know in my last post about the River Discovery trip, i implied i was done talking about the river for now, but i found a few pictures on my camera, so what the hay.

I'm longing for my life on the river today. I haven't been more angry with myself in a while. I missed a voicemail for an interview. I don't know how i managed it. It was a job i really wanted. It's the most elementary part of the whole process- make sure they can contact you. Duh, duh, duh. To make matters worse, it was 6 days later i discovered the message in my 'saved' box, i should've contacted the interviewer yesterday regardless, but i was too devastated. What do i say? I'm a dumbass? Ugh. A job! Benefits! I'm such a goddam space cadet. I'm ready to hibernate. Does anybody have a cave i could borrow for a while? Fuck. I should've been a bear. (Link to a poem- my in-dwelling poet is like six years old, so don't expect too much.)

Speaking of, i apologize i've been such a petulant potty-mouth lately. It wasn't my intent to come here and curse and complain all the time. Not at all. Thanks for being so patient with me. 

Lots of time driving in the rig. 

Our camp kitchen. My sister got to come on a trip.

Did i mention lots of time driving around in the rig?

with a big load

crew camp out before a trip

I meant to take more pictures on one of my favorite sections of river, but it's a little crazier, so i never had my camera out.

The toilet. Some guests struggle with this, but i'm a fan. When was the last time you took a poo and saw a shooting star? Hm?

Lots of love to y'all from your unemployed, rubbish-brained former river guide.

River Discovery Trip

Before i leave summer alone, i have to mention one week that got my gears turning. It was a river trip exclusively for kids either currently battling or who have survived the nightmare of cancer. It's an awesome program called River Discovery. There are opportunities for both teenagers and adults and it's my understanding, save for an application fee, it's free for the participants.

It turned out to be my last trip and it was a poignant end to the summer. (Also great because i wasn't trip leader, so i could just sit back and be a dumb river guide again.) I'd heard stories about last year's River Discovery trip having open port-a-caths and chemo in camp and that sort of thing, so i wasn't sure i'd have the emotional fortitude to bear it. I lost one of my good friends, Susie at 9 to leukemia. Just the word 'cancer' sits like an infected lead ball in my stomach. I'm a pretty big sissy about it.

It's such a cool program. A few of these kids have been the last couple or three summers, and they freakin love it. I was filled with admiration watching them scramble on rocks and hike around and even  do some rappelling in camp despite a number of them having internal prosthetics and braces, and some being generally frail. 

But most of all, they were just regular kids. There were baby-faced hand-holding romances and everything else you could expect with 13 teenagers involved with anything. We had great support from volunteers that had backgrounds in varying, complementary fields including an oncologist who turned out to be a riot. 

They were all very tolerant of my shenanigans and great sports when i duped them with some good, old-fashioned river guide trickery. 

There were games and skits and water fights and guitars and songs and campfires and all that awesome hokey river camp shiznit. We all cried when we realized the last night had crept up on us. It was a helluva privilege to share a week on the river with this bunch of kids that confronted fears and challenges with practiced pluck and determination. We laughed a lot.

All week all i could think was, how cool if there was a program like to accommodate people with all sorts of chronic illnesses? With a well trained, vigilant crew, maybe even adults and kids with seizures could go on these trips. Sure, we might have to enforce a strict buddy system and pass out helmets as soon as we hit camp, but holy crap i'd love to make it happen.

Seriously, though, if you know of anyone with the misfortune of a cancer diagnosis that could benefit from one of these river trips, check out the River Discovery website.

Note: I've mixed in pictures of trips with teenagers from throughout the summer for the sake of preserving medical privacy

More Rivers an Stuff

So how cute are these kids?! They were incredibly well-behaved to boot, and not in a nauseating weenie way either- they were characters. It's awesome to see kids excited about rivers and beaches and sticks and things. They both took turns and rocked it in the inflatable kayaks. My job is a blast. Of course their parents were likewise, awesome and grateful and fun-loving; and the week went by in a flash.

Once we got Ungrateful Hell Demon Succubus Wench Biatch out of the way on the first trip, our summer guests were insanely gracious and enjoyable and incredibly complimentary. One father said to me, "I see a lot of Mother Theresa in you." Ha! (the brown hair maybe???) But sheesh, the ultimate flattery huh?

One lady commented, "You're such a diplomat. You don't even curse." and another, "You're so collected and unflappable." (can you believe that? who says that?) to both i couldn't help but think, where have you been all week? and/or you must have me mistaken for one of your other river guides. Wow.

I've actually visited a few since the river trip. How cool is that, to have guests you'd actually care to hang out with on your own volition? I'll have to tell you more about my recent excursion to the coast in a future post. But seriously, they were top-notch, appreciative, adventuresome, good-natured folks for whom i'm forever grateful. 

We all survived despite the capricious nature of the seizure gods. I think it turned out to be the second best summer, neurologically-speaking, in all the years i've guided. (I think if some of my friends were reading this, they'd be flabbergasted to hear me volunteering any seizure-related info any time ever, but, hey, i'm learning.)  And in general, all the not-so-carefree moments when you couldn't pay me enough to be in charge (like the week we had a group of 20 and no camp reservations), and days hitch-hiking to make rig-outs and all other frustrating behind-the-scenes snags and annoyances considered; it was the best summer i can remember. 

Not perfect, like i said, but it went wrong as well as it could've. I wasn't without at least some baseline level of anxiety about the ever-looming worst-case-scenario. The little knot coiled up in my stomach over it nearly exploded when i heard myself in a fog, what did he just say? We'd been playing bocce ball in camp and i realized one of my guests had just asked me, "Do you have narcolepsy?" His hand streaked a few inches in front of my face. Fuck. I just smiled at him trying not to appear startled, failed to address his query, and tried to play it off. 

A calm pool just before the voracious Black Creek Rapid.
Mr. Greenshirt was my summer flame (gasp, yes, there was one.)

But i was shaken up by it. It was a glaring moral-dilemma squaring up with me like a gorilla linebacker in the NFL. I'd known at one time in my life that i'd had absence seizures, but they'd pretty well fallen off my radar entirely. This blew my whole justification for guiding again totally out of the water. I have a warning for bigger seizures thanks to my dog. With her, i have almost too much time to prepare for an impending neurological assault. 

It still sucks, but having advanced notice eliminates most all of the dangers associated with a condition that unpredictably derails or wrecks a person's streaming train of consciousness. Even though seizures themselves can pose a threat, especially in the wilderness, i'm confident i can guarantee the safety of our guests.

In the instance of absence seizures i'm not even sure when and how often they happen these days. They might be brief, but what i know of bad things leads me to believe they tend to happen pretty fast. 

Alder, one of our first big rapids.

So, f*@#, i was unsettled. For the next while i was fairly convinced it was my last trip and i'd have to call it quits. As much as i was certain from the start this would all be a disaster and i'd be sent packing, i wasn't really emotionally prepared for it. 

I talked with the rest of the crew and they were a perfect balance of concerned and casual about it. They were all first-responders of varying degrees and claimed they were prepared to deal with whatever happens. I vacillated again and again as to what was the right decision. 

Soo maybe these guys don't *look* super credible,
but I'd count on em any day of the week.

Just as i'd eased myself into a que sera, sera mode (because really there was nothing i could do about it in the middle of the trip), one of my guests, a mom and elementary school principle from California, approached me as i was down at the boats scrounging for something and she called me on it.

I probably would've thrown up or fallen over or tossed everything in my arms into the air and sped away like a cartoon character, fast and maybe forever if she hadn't been one of the kindest, most tactful ladies i've ever met. Also, she prefaced the conversation with, "My son has epilepsy." 

Purportedly she wouldn't have known were it not for the fact that my voice cuts out and you can see the scars and marks on my neck from the VNS. (You can see them in the first picture in this post and in my profile picture, i noticed.) Have i mentioned the the whole VNS thing yet? Maybe not. More on that in the future perhaps.

I was stunned. Running was no longer an option. My legs had turned to jelly so i parked myself on the nose of my raft.       It was never something i planned on divulging with clients, but shittlesticks, the cat was already out of the bag, and i desperately needed some advice, so i asked for her opinion.

Sometimes i wonder if epilepsy isn't really The Sacred Disease after all. While it seems like the antithesis to what we'd normally deem a god-send (unless you're talkin Old Testament, then it's totally god-sent), there is this underlying theme of people snagging me out of mid-air, sometimes literally, when the odds were overwhelmingly that i should've eaten shit and maybe died. 

The chance that somebody with all the right amount compassion and empathy and knowledge would enter my life at just the right moment were probably not good. Of course i cried. Thankfully, it was already getting dark. Nonetheless, someone stumbled upon us given the intimate size of some of our camps, and maybe a little of that mom/woman hocus-pocus, it just so happened to be another one-in-a-million guest of ours i'd gotten to know that week whose company i'd enjoyed considerably.

So when she asked if i was okay, in the spirit of disclosure and wanting as much input as possible, especially from someone with a guest's perspective; i solicited her opinion also. She actually had detected a state of space cadetery a time or two but didn't identify it as anything super disconcerting. They were both nearly effusive in their accolades for me and the rest of the crew. They maintained they felt nothing short of safe and assured in our capabilities. I was a little taken aback actually at their praise. They're both highly intelligent women. 

Maybe they were just braver than most but i came away from the conversation with loads less apprehension and a Texas-sized helping of reassurance. I knew if i was going to survive, i couldn't stress about it. So we took everything in stride and lo and behold those ladies were right. I had some full-blown seizures, but one was on the drive around and the other was in between trips, and nobody reported to me again that i ever seemed out of it. Was it negligent? Maybe. Did it turn out okay heckfrickinyes it did! Was it the right choice? Who knows? But phew and hallelujah.

So, that's the recap of the summer from the standpoint of my central nervous system; just shy of ideal. I wish seizure kids of all ages everywhere could be so lucky as this. I'm insanely grateful not only for fewer bouts of neuronal misfiring, but for all the people and dogs, and whoknowsmaybeGod/gods/goddesses watchin out for me.