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

Still Bewildered (pt. 3)

Smoke haze sunsets of late

So, back to the saga... I was teleported, (rolled? pneumatic shoot-ed? toddled? - don't remember that part), out of the Neuro ICU, up to the Neuro floor, where, as I mentioned before, was 85 G-forsaken degrees, at least. Granted nobody sleeps in hospitals, but that guaran-dang-teed i would not be sleeping. 

Every day they said, 'We'll let you out tomorrow.', but tomorrow they said the same thing. I was having seizures, but to my knowledge none of them were particularly prolonged or severe. (This is not to suggest they weren't still pushing lorazepam or whater by the tranquilizer gun-full.)

Oh, and less-than-titillating, but, i feel it important to mention - I've never gone all the way off one of the pharmaceutical drugs (lamotrigine), but i was on a lower end of the 'therapeutic range' deemed effective for seizures. (There was a study released this year that validated my experience - 'The best response to AEDs used in monotherapy was observed at low dosage.' (This study was specific to refractory epilepsy.) Boom. Case in point.

My lamotrigine level was found to be normal. Turns out it  actually worked against me, I later found out from my rockstar nurse/friend mentioned previously, in making the decision to fly me Spokane. Which is to say, if the levels were low, they could cite that as the cause of the seizures. Presumably, they could have kept me there and worked on getting the lamotrigine up instead of opting right away for the ol' heave ho.

Anyshnitzel, back to the Neuro floor, (is that capitalized i dunno - Hell is, so we'll go with it.) It's pretty fuzzy - wish i remembered more. I don't remember any of the food aside from ordering coffee one morning and wondering if i'd be allowed to have it. (They brought it, and whatever the coffee-like substance, it was better than some tepid, brown,  stomach-stripping agents sold at some gas stations.) I was very grateful for it.

My sister was able to bring Olive in during the day. Tami, my sister's wife, brought me a small fan. Oh, land, and they brought me my cell phone. (I need standing orders for them to prohibit access to any and all technology while in hospital custody.) I was texting people at o'-dark thirty - nonsensical gibberish, calling in to work (Hay-suess Crisco). Thank goodness I am not a shopper. 

(Again, I digress...) May have already told this story, but one time I was stuck in our local ICU for something upwards of a week and tethered to a hospital bed. Again the details were/are few-and-far-between. That time, someone thought it would be a good idea to bring me my laptop. I remember begging the hospitalist to let me out of bed. I will crawl, I pleaded, inch my way like a caterpillar, human-egg roll around, *anything* outside the confines of the head, foot and siderails. (No dice.) I recall feeling desperate about that. It was two or three weeks after my release, I found hospital floor plans downloaded onto my computer. Where do you even find something like that on the internet, guys? All I can surmise is a escape plan was being formulated somewhere inside my snowy, snowy, stir-crazy brain...

Anyway, the Sacred Heart neuro floor was hot and even noisier than most hospitals. I could hear kids. At times it sounded like a slumber party and foot races in the hallway. Or maybe I was simply delirious dreaming the sounds of them.

I don't think i remember any of the seizures i had during the day. I know my tongue and mouth were pretty thrashed. Freaking sharp, aching, constant oral pain. I'd have gladly done myself in with a massive overdose of benzocaine.

Ah, shoots, did I even make any progress here? I got carried away away on the tangent train. (to be cont'd)

Here's some more pictures of our recent smoke-enhanced sunsets: 

Just down the road from work

And the obligatory Olive photo

Have a sweet, sweet day,

Alli

Dear Seizure Diary...

Photo credit; ToysRus®

Dear Seizure Diary, (diarrhea. dying. days-to-death. hash. mar. demarcate. enumerate. etch. scrawl. scribble. keep score. reckoning. counted. numbering. regarded. acknowledged. knowing. not present. accountable. account-for. tracked. summed-up. summoned. tallied. cast up. cast away.)

Go fuck yourself.

Not yours. Truly,

Allison

It's a great idea, and an important tool in keeping track of blasted seizure things, but I haven't kept one in years. It seems a full admission, acknowledgement of the whole situation (which I still suck at, though you all have helped me, unquestionably, in that regard). Plus, when it happens, it tends to be enough of a disruption (despite the relatively short duration), that you imagine you'd never forget much of anything about it.. 

Hoping to post more soon, but my brain has been swimming the last few weeks. Apologies for resurfacing when things are shitty. I probably need more counseling, but there don't seem to be a lot of other avenues for relating this ish outside the closed doors of a frumpy sham of a room. It seems there aren't many that can relate or have much understanding. I appreciate you all heaps and regret my absence. (The work/life balance is still eludes me much of the time.) 

Much love. Kindest regards,

Me

Another Whamble (on neurologists, side-effects and protective custody)

I needed some good news. In Idaho people are pretty well convinced our country is going to hell in a hand basket. They're loaded with Copenhagen and conviction, as riled as i would've been had the alternative candidate come out on top in the election. A bunch of Chicken Littles squawkin around here.

We're considering moving again. We wouldn't go too far, and we have all intentions of returning to our lovely Moscow town, our little liberal oasis. As well-versed as i am in the exercise of boxing up all my belongings and schlepping them somewhere else, it's daunting. By the time i hit high school i'd moved 14 times (not including hippy hops to different houses). I've moved 4-6 times since then depending on how you count. I'd be fine with staying put a while. I swear i would.

Especially since the assimilation here was a such bitch. It'll be bushels easier having my sister with me this time around (i moved here a year or so before she did), but i hate the breaking-in stages of being in a new place. Yuck. We've had our growing pains, but there've definitely been times it seemed the only thing keeping me afloat was this community. People at all levels and throughout the system have gone to bat for me. That is priceless. 

On the flip side, however, there have been a few nightmares like the taser-happy cop, the a-hole paramedic and the local neurologist. In my quest for a pick-me-up, i called the neurologist's office to confirm the rumors of her imminent retirement are true. The receptionist gave me the glorious affirmative, YES! So at least there's that. Finally, nobody will suffer at the hands of this woman again (at least for the next month until the world ends).

Don't get me wrong, i'm overwhelmingly grateful for the competent, caring medical professionals out there. I'm indebted to them more than i can articulate. I'd take up arms and battle on their behalf if it came down to it.

But the bad ones... ooohhh the bad ones. My blood boils knowing now there are other patients who've had similarly terrible experiences with this medical practitioner. I've been to a lot of doctors. Neurologists seem to be a fairly kooky bunch, but mostly good, well-intentioned people. But this lady, this lady takes the cake. I'll go so far as to say she may be a demon incarnate. We're so vulnerable as patients and she seems to pray on this, picking on threadbare, insecure victims like a heartless predator with a sadistic, power-mongering God complex or something. 

It was traumatic. I think i have PTSD from this doctor. I was totally duped thinking she wasn't a wackjob and actually cared.  First off, she started me on 2 new drugs and glossed over the side-effects, basically, "you might have facial widening, gum hyperplasia and increased body hair", nevermind discussing potentially life-threatening side effects, but no worries, i can read the pamphlet.

Then, i saw her a few more times. Each appointment i waited at least an hour an a half to see her. Okay, i can understand a practice being busy. I won't fault a doctor for spending extra time with patients ever. We did routine blood-level draws of medications and scheduling EEGs; everything seemed pretty copacetic to me. (I was still having seizures, but she seemed to be working with me.)

Then it got weird. I was downtown and ate shit on some concrete. The EMT's knew she was my doctor so for some reason instead of taking me into the hospital, they called her and she agreed to see me in her office. They walked me there (i don't remember that part but afterwards, there's about 20 minutesish where i can interact with the world, but i don't remember any of it.) What i do remember is standing in her office puking in her sink, the kind where it feels like bucking broncos in your gut, bilious and violent and head splitting. 

I felt awful (both physically and for making a mess in her office). She had her receptionist walk me over to the hospital for a blood draw. I puked in a red wastebasket as they pulled the sample up into the vials. The receptionist told me i was free to go home. I did a couple circles in search of a bathroom, but i couldn't find one so i made a bee-line out one of the doors and hurled in a bush outside.

I made it home, my head spinning and slept on my couch for a few hours until i heard someone bang on the door. "Come in" i uttered from my prone position on the sofa. A cop entered. "Nevermind go back out!" (I didn't say.) I stepped outside. Three patrol cars were parked at the curb, lights whirling. They were taking me into protective custody. "It took three of you?" I didn't have energy to argue. 

Salmon River Winter '09

It was about 7 pm and they'd been instructed to take me into the E.R. where the lovely neurologist, had agreed to see me again. I was pissed, especially since she didn't saunter in until 11:30 or Midnight and wouldn't let me leave until i consented to a CT scan (even though i was no longer vomiting, my pupils were normal, etc., etc.). By the time i got discharged, it was 1:30 in the morning, but protective custody is a mandatory 72 hour hold in Idaho, so it was even more time-consuming rigamarole while my lieutenant friend got a hold of the district attorney and they finally let me go. By the time i walked home (a mile or two), it was basically dawn and i had a biochem exam at 7. 

It seemed about the least conducive strategy to reduce seizures (stress and no sleep). The doctor has both a secretary and a receptionist; they all could have phoned me, plus they'd billed me a number of times, so they knew my address, but instead they send the police. I should've fired her on the spot. It was definitely a red flag, but i gave her the benefit of the doubt on account that i was throwing up in her office after a blow to the head so cops or not, she was practicing some cover-your-ass medicine.

Against my better judgement, i saw her again. Her tactic was a nip-it-in-the-bud approach, and i was ready to stop eating shit and hitting my head so she added some new meds to the mix. I was on 5 (one was PRN, but as-needed was daily). She didn't decrease any doses. Usually side-effects abate for the most part after a few weeks, but after a month of not being able to walk straight i couldn't take it any more. 

I was pulled over every other day for public intoxication (and you know it's bad if people are reporting you in a fairly tolerant college town).  The levels would fluctuate throughout the day. My normally 10-15 minute walk home would take upwards of 3 hours. It was two steps forward, one step back. When levels peaked, my world would ass-over-tea-kettle. It was like Fear and Loathing minus the euphoria. Once i was at the farmer's market and it was all i could do to not take out small children or merchandise tables. (It's no wonder i can't land a job.) For weeks i looked like the town drunk. 

Frat boys yelled at me from their balconies when i mis-timed my stumble home with the end of a football game. I was afraid i'd veer into traffic if i tried to stay on the sidewalk so i attempted to negotiate my way across an adjacent hillside. The uneven ground proved an even greater challenge. They yelled and whooped when i fell. I was laughing too, which didn't help, but i knew how it must've looked. 

I had to cling to a chain link fence when i encountered some construction that blocked the sidewalk. Cars raced by as i waited for a break in the traffic, holding on for my life. I might have cried, or maybe it was just sweat and stress and the scent of metal.

I was miserable, desperate, couldn't ride my bike, couldn't play sports, couldn't sleep, couldn't focus, couldn't read. I finally had another appointment with the neurologist lady. It was at 1 o'clock, it was all i could do to make it the 7 or so blocks in the hour i'd permitted. I worked my ass off just to get there in time and then like usual, i waited. Then they put me in one of her exam rooms and i waited some more. I waited for hours. Every time i stuck my head out to make sure i hadn't been forgotten, they'd usher me back in with the same promise she'd be in shortly. 

Finally, 4 hours after my appointment was scheduled, she came in to see me long enough for me to explain i couldn't stay on the sidewalk and i was afraid of being hit by a semi. She asked, "are you having any seizures?" 
"Not big ones", i replied. 
She gave a self-satisfied "mm-hmm." Then she excused herself from the room saying she needed to take an important phone call. So again, i waited. 

I had to call a professor to reschedule a make-up-exam (holy shit biscuit). I was frustrated and furious. I scribbled a note with questions, waited some more. I peeked my head out again, saw her office was empty and learned from her receptionist that she was in with her next patient. So that's when i left her office for good. 

I found later that her clinician's notes claimed the day she had me arrested i had eloped (left against medical advice. I'm not even sure that term applies if you haven't been admitted.) The day i left during my last appointment she claimed i had disappeared and they couldn't find me(!) How infuriating. 

I was really concerned about the bash to my credibility.  Fortunately, though, i was since able to get a referral to a specialist in Spokane who's phenomenal (and knew all about this neurologist's reputation). Also, a look into her online ratings revealed a bunch of other dissatisfied patients. As much as i hate to know i'm not the only one, it was validating to know there were others out there.

The corollary to this story is if you have hard-to-manage epilepsy, see a seizure specialist. Also, if you're in medicine, become an epileptologist. We really, really need you (especially if the world doesn't end next month after all).

Purple Gophers and Mustaches

In case you haven't heard, November is Epilepsy awareness month. I knowiknow, every month is something-awareness month and it's pretty dang overwhelming. There are so many worthwhile causes out there with symbols and colors galore, but purple is lovely and we definitely need your support. 

Granted i'm biased, but this is a cause that's in dire need of attention. Seizures aren't just a drag; they aren't merely a frustrating, humiliating, inconvenience; people are dying. 

More than 50,000 people in America die on account of seizures each year. That's 50 thousand devastated, heartbroken, grief-stricken families every. single. year. That's waaaay too many moms and dads burying their babies. If we bunched it all up, that's enough sadness to sink a goddamn battle ship, (and that doesn't even include the anguish felt by friends and caregivers of these individuals, and the anguish that endures year, after year, after year in everyone's hearts). Epilepsy steals more lives annually than breast cancer, yet the funding is about $35 per patient vs. $2,976 per patient (according to abcnews), respectively. 

It's staggering enough, but we also can't forget the millions of families who are waging war daily against seizure disorders. 3 million people in the U.S. have been diagnosed with epilepsy (that's twice the population of my home state). About a third of these people don't find good control with medications. So in addition to the thousands who succumb to the disease, there are at least a million more in our country who are robbed of quality of life and their most intimate sense of security. This results in a ripple effect of constant worry and fear and hyper-vigilance for all those who love somebody with epilepsy.

If we had a dollar for every time a mom, sister, boyfriend, daughter, etc. watched helplessly and begged and prayed and pleaded for convulsions to end, we'd have a mint to contribute to funding and research. But we don't have that money, and if we don't start talking about it, we never, ever will. 

While knowledge and understanding of the disease has improved, it's still widely misunderstood and seldom discussed. We've made leaps and bounds since the Salem Witch Trials, but the stigma is still there. People don't regard epilepsy as a burnable offense anymore, but popular culture these days tends to ignore seizures entirely, save for the occasion they're the butt of a joke or featured as a bizarre oddity on a Hollywood medical TV show. 

For more information, here's an article that appeared in Newsweek a few years ago: Epilepsy: Overlooked and Underfunded

While i vilify those out there who mock people with epilepsy, i realize i'm just as complicit in my silence. I haven't much talked about it outside of absolute necessity. I've run from it and done all i could to deny it. But i've realized for each of us in the literal knock-down-drag out brawl against this monster who have a voice, there are many more out there who don't. 

So, God help me. I'm talking about it. I'm learning. We'll get there. 

It can seem a daunting venture. Who really wants to hear about these sorts of things? It's an awkward conversation. Nonetheless, we have to stand up. The state-of-affairs on the epilepsy front is not okay! A life riddled with seizures is synonymous with terror, and too often, hopelessness. But when i noticed this headline last night my eyes and my heart welled up in a rare moment of optimism:

Gopher football team to raise epilepsy awareness Saturday[!]

Jerry Kill, head coach of the University of
Minnesota football team

Thanks to this brave man who contends with the burdens of epilepsy, the first ever college football game dedicated to raising epilepsy awareness was played today! The Gophers may not have put a win up on the scoreboard, but it was sure as hell a win and then some in my book. I feel so hopeful.

Here's some of that purple in action!

What's more, he and his wife stepped up to the plate yesterday to become public spokespeople for epilepsy. I can't begin to tell you how elated this makes me. This. This is the sort of advocacy we desperately need. 

Now pardon me here, but where the fuck are you David Beckham, John Travolta, Neil Young, Danny Glover, Chief Justice Roberts, etc., etc.?! We could certainly use a little star power in the fight against epilepsy. Please, for the whopping 65 million people struggling worldwide with this disorder, let's turn the lime light at least a little purple. 

Also, i noticed November is doubling as prostate cancer/men's health awareness month which guys are deeming 'Movember' and sporting mustaches. I won't lie, selfishly at first, i was a bit loathe to share the month, but i feel we can all win here if those guys would man-up and dye that upper lip fur purple. Thanks in advance, guys!

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.