Music's Like a Snuggie for Your Soul


Wednesday, November 29, 2017

Bewildermint - an After Dinner Treat (pt. 6)

Even though I still couldn't walk a straight line, I went back to work pretty much right away. There were times throughout the day i had such bad double vision, I couldn't read the words on my computer screen. (It could have been quintuple vision, but i'm not sure i could count to five at the time, so.) The drug levels fluctuate like less-than amusing carnival rides. At various points you could find me out in our gravel lot, sitting like a broken ballerina or a fallen clown, clutching one of the large, 55 gallon, garbage bins, head bowed inside and heaving. While I might look amazing in a tutu, I have no grace when it comes to them spins.

My sister and her wife, Tami, stayed with me. They live about 4 blocks away, so it wasn't a total hardship for them. (But still a pain, for sure.) I was a junk show. If falling down with seizures wasn't enough, when i stood up too fast(and i wasn't doing anything fast at the time, believe me) I passed right out.  (Still do sometimes - Dr. is well-aware, but doesn't seem so concerned as i am. Oh, and i'm sure passing out is strange for everyone, but it's a trip for me. A few of the times i've woken up, my legs were still bouncing. [Some people have convulsive-like movements when they pass out?] I've never been cognizant during an all-encompassing seizure, and i rarely remember waking up. It's bizarre laying there and self-assessing when you're still in some full-body paroxysm after all the times you've done so unaware. Maybe i've died during a seizure and now i'm conscious and leaving my body. But wait, i can still *feel* my arms and legs...) I broke glassware falling on my coffee table and also a full-length mirror. 

I also fell on account of the vertigo I was still experiencing from the drugs, like being stuck on a heinous carousel ride at warp speeds. When my higher nighttime dose peaked, I was so whacked, I'd fall from even a crawling position. I'd have to yell out to my poor, hyper-vigilant caretakers, "I'm fine, i'm fine, i'm fine!" Just crashing, no seizure.

Na 'Aina Kai Botanic Gardens Kauai
Like i mentioned in a previous post, I'd been calling in to work from the hospital. People took it in good humor and were pretty chill about it, but I guess I was pretty loopy over the phone. (I have no recollection. I was shocked to learn i'd called in most of the days.) They knew somehow, i'd been Life-Flighted and I was pretty sure, despite the copious truth serums, I wouldn't have divulged that particular detail. (Though i've certainly said and done things on those drugs I never imagined.) EMT coworkers who may have known, are consummate professionals and, in my experience, unfailingly discreet. Sure enough, it was my dad who had called in and divulged all the gory details- thanks Dad! Gah, as if they weren't aware enough already on the work front. (I know it was well-intended, but seriously.)

I'd called in one morning, i guess, and a coworker friend answered. I can't remember the story exactly as he told it, but basically I identified myself, confirmed who he was, and promptly hung up on him. I got transferred another morning into my manager's voicemail box. I guess I said, "Hi [manager's name here], i like your voicemail greeting. Bye." <click> Not even relating a shred as to the intended purpose of my call. Lord knows what i liked about her voicemail recording.

One time, a number of years ago, I was benzo'ed and gonzo'ed in the ER and invited a bunch of hospital employees, cops and EMTs to a party at my house. Thankfully, someone clued me in, so i was aware of the event prior to everyone's arrival. It wasn't totally out-of-character; I enjoy get-togethers, but hosting larger affairs that include more acquaintances than close friends, is totally anxiety-provoking territory for me. 

At least 20 people came. Aside from my boyfriend-at-the-time ruining a strawberry-rhubarb pie filling, (having mistaken burdock in the yard for rhubarb), everything went without a hitch. Thankfully, burdock is totally edible, and while the pie might have tasted like shit, we didn't, even nearly, poison a good portion of the first-responder contingent of Moscow. Oh, and my plant ID ninja skills realized our blunder before the filling hit the shell, and we even had enough time to make another batch before the party.

(There's me digressing again.) The entire town was a construction zone this past August. That's no exaggeration - there were street closures and blocked lanes that appeared all over without warning. I swear, they must have run out of signs! And given my level of intoxification, there was no way I was biking. On one hand, with all the roadwork, it seemed easier and safer walking places in any case (despite concomitant sidewalk closures). On the other, Olive the Wonder Dog's goodsent abilities allow for enough time to get home from practically anywhere in town by bicycle, but not necessarily enough time by foot.

Olive the Wonder Dog
I can't remember how many days into the work week I made it; It wasn't the first day back, at least. About midday, ol' doggo made clear to me that it was high time to leave, or i'd be creating a scene. With her rate of walking, these days, odds were a snow cone in Hades we'd make it in time. I abandoned her and started booking it home. 

Well, i might have made it, but with all the single lane nonsense, and mostly unregulated intersections, it took longer to navigate homeward. I made it to the highway junction, just two blocks short of my house. There was actually a flagger there. Even if she'd been able to usher me across expediently, by then, i didn't have a prayer. I was half off the curb when I timber!ed. My dome hit the asphalt, and not the curb or the concrete, so it was more superficial than it could've been. I guess one of the construction workers sat and held my head, while others called 911. This totally mungged up the major intersection even further. I can't imagine how many poor people were held up in their cars in the hot sun, bearing witness to the whole spectacle. 

I ate shit a few more times along that stretch in the subsequent days, but i've already written a novel here so i'll spare the details. My sister guys, in turn, were wary of allowing me to walk anywhere. (I love my commute!) I'm an introvert, which isn't to say i'm not gregarious at times, but i definitely re-energize in my alone moments, rather than via interaction with others. I was dejected. Thankfully, it occurred to me, as long as i was pushing my bike, I could toddle almost anywhere wearing a helmet without relinquishing my last shards of pride. That placated them a bit (the helmet, that is).

More whackadoodle anecdotes to conclude the saga, but I suppose it will be left 'to be continued', yet again.

In the meantime, besos y abrazos to you, dear reader.


  1. Okay, I know this is probably stupid but could you have Meniere's disease on top of everything else? Your description of crashing even when crawling triggered this thought, although I am sure you're right- it is your night time meds. But I know a woman who has Meniere's and she has to crawl sometimes and even then has difficulty. Ugh.
    Darling woman, you are the most amazing writer. You may have trouble on two feet but when you write, you fly strong and true.
    And your spirit? Fuck me. I am humbled.
    Watch your noggin. I love the heart that dwells beneath it. Kisses and hugs to you, always.

    1. You're amazing. And not stupid at all. I can almost positively correlate the symptoms with the dose increases. Thankfully the vertigo goes away after a few weeks. Now when i pass out it's more of a vasovagal thing (known side-effect of Vimpat).

      Meniere's disease is one of a handful that i think might be on par, if not worse than epilepsy.

      Have i mentioned you're too kind? You really, really are. Thank you, Ms. Moon, always.

  2. I ditto Mary's comment. I love you so much -- you have no idea how much your words mean to me, your experience and story spun out and on the page. I can't help but imagine that Sophie feels much of what you do, and I am humbled by that.

    1. Every day i hope to be a better advocate for people with epilepsy. Especially in recognizing so many of us don't have a voice to speak up for ourselves and others living with this under-funded, poorly understood condition.

      It's one of my biggest regrets that i'm a far cry short of a champion for the cause. One I hope to remedy someday.

  3. With every new installment I am left clasping my hands across my face in disbelief that you made it out alive. Ajax, you are ferocious! I adore that spirit of yours. You are so ALIVE and KICKING, I need to look at what life offers me with completely new eyes. Huge thanks for that.

    As an aside and in line with what Mary and Elizabeth mentioned:
    I must deal with unpredictable and far too often eruptions of vestibular neuronitis (aka labyrinthitis) - in my case due to my shitty autoimmune disease (aka ANCA vasculitis). On my worst days I could be you as described above, crawling at best, vomiting, reeling and blabbering if at all and without any horizon to get my bearings.
    I have run the gamut of diagnosis and treatment options several times over (I am in a country with *socialist* medicine which means I get a free MRI when my GP snips her fingers) but sorry to inform you, the only thing that really works is cortisone, heaps of it for 3-5 days (if possible iv). I can set my clock by it.

    Anyway, maybe get your balance organs, these tiny semicircular canals inside your inner ears, checked out. Vestibular function tests vary but are not painful. I could write a book about them but I won't. Dr google can do this quite well.

    Look after yourself and your guardian angels. I need your energy.

    1. I don't know, buddy, vertigo is *miserable*. I'm lucky that i can attribute it to a medication, and that i now know, and can be prepared for that side-effect, rather than experiencing a loss of equilibrium unexpected and sporadically.

      Again, i know *so* many people that would benefit from a non-steroidal corticosteroid equivalent. They're up there with benzo's it seems, in terms of habituation and gnarly side-effects (and steroids probably have benzo's whooped in the side-effect department).

      Gahl, well *you* render me grateful with your perseverance. Epilepsy is a shit thing for sure, but, while I maintain it's sorely lacking in treatment options and desperate for better understanding, public awareness, and insight; at least there's *some* public awareness and lots of company aboard the rotten seizure boat. ANCA vasculitis? Notsomuch.

  4. You write with such wit about something that indeed is so serious and dreadful that I literally have insufficient words. Holiday Hugs.

  5. You are my superhero. Azax the vibrating, ferocious and goofy lovable wonderful woman. And your sidekick, Olive the superpup. Your resilient heart, which you share so openly with us, is tempered by so much ache. I see you. I know. If you are not a champion for everyone with epilepsy, you are raising awareness in some of us, and the ripple effect is real. Love you so much.

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