Music's Like a Snuggie for Your Soul


Monday, October 29, 2012

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 thinkwhere 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.

Saturday, October 27, 2012

Ahoy and Lo Sientos

Gahl dang, last i posted it was still sunshiney, swimming weather and now it's blooping snowing. I didn't mean to leave you hangin (not that it was a real hardship for anyone ha), but my computer is gonzo (depressing) and also, i accidentally developed a Sudoku addiction so i've spent the last few months filling numbers into squares.

Not really, but i did learn to like Sudoku and i thought i never would. (Numbers fun? Who knew?!) I've been meaning to post forever now, but my life feels sort of adrift and jelly-fishish. It's been pretty great, relatively, but i'm job-searching again and that's always a little stressful. 

Just kidding- it's really f-in stressful! I mean, where does service dog fall into the realm of reasonable accommodation? It seems like every other job out there requires a valid driver's license (mine's valid, but i rarely drive). And, in all honesty, some days i sure wouldn't hire me. I'm a decent employee, but epilepsy can pile-drive productivity into the ground and mop it around the floor like a rag doll. I'd give anything to be a reliable, dependable, boring adult. Seriously.

And i have to go into interviews and assert myself and hope i can skirt the incriminating questions. And then i have to feel all bad and mildly deceitful if i actually get the job and have to disclose all that gobbledy gook after the hiring process. 

That said though, on the seizure front things are good. Not perfect, but i'm averaging a full-blown, ginless tonic-clonic every 2-3 months. If i could be assured this frequency would persist for the rest of my life, i could probably be almost stoked on that. 

Who knows what it is though. Sometimes when the rug gets pulled it turns into a wicked, gnarly, vicious cycle. (Seizures themselves render you more susceptible to more seizures, anxiety about having had a seizure can result in having more seizures, seizures can disrupt your sleep [lack of sleep is a huge trigger], work that you missed while you were busy carpe-dieming snowballs on you, etc., etc., so on and so forth.) Maybe the combination of the river and eliminating the school environment and related stress factors has done it. I'm nearly heel-clicking grateful for it, but at the same time tip-toeing around eggshells.

It may have been a nearly sub-conscious factor in my not posting for so long. I was so afraid to jinx it all. Since i last posted i've had 3, count em 3 seizures, and i know we haven't hardly gotten to know one another yet, but i've had weeks the past few years where it was so bad i was in the ICU for 6 days and remember almost nothing; where i was averaging 4-5 full-blown, generalized seizures a day. So *whisper* hooray! zippy bloopin doo! Fo rizzle my frizzles; not shizzling you.

My dear friend Elli and me rockin out on the carrot mic
as we prepare for a wilderness picnic. It was a
happy summer, albeit a bit smokey.

Anyhow, I have some river pictures and maybe a few more anecdotes from the past few months that i'll get up here. I just wanted to say howdy and sorry for the hiatus magnus. Sorry for such a me-centric post. Thanks a million for the listen.