I write dark things...
Another Update 9/15: Neuro was correct, I was overmedicated. Night meds were causing night tonic-clonics, and when I dropped those I went back to sleeping less, but feeling more rested. Go figure. I’m not doing more meds, however. Instead, I’m doing mo’ yoga and working out more, in addition to finding other ways to destress. It’s working, because I’m not feeling off in the afternoons anymore. Net analysis: pills still suck and alternative treatments help when other methods fail for resistant epilepsy. And oh yeah, Me: 1, Epilepsy: 0 — because that’s how the score is always going to read.
Update: I saw my neuro about a week after I posted this. She thinks I’m overmedicated, which is profoundly hilarious. So I’m getting an EEG to test for that hypothesis. If so, she’ll drop the night med she added, and then we’ll try something else. So yes, another drugs on the horizon, most likely. *sigh* Well, keep your fingers crossed. For…something.
I still hate pills. I despise them. I am so over every single last fucking one of them.
Yeah, this is one of those blogs. Feel free to skip it. In fact I almost didn’t post it. I’m not whining. I’m not wallowing. I’m just hating.
Yesterday I had not one, but two accidents. Both my bad. I hit a parked car (honestly, how hard is that?). I rear-ended car in stop-and-go traffic. Both times I was confused, wondering, what? How the hell did that happen?
Yeah. Welcome to absence seizures. Or call them petit mals if you will. Call them the things my fucking pill cocktails are supposed to be managing.
Although I hate the pills I count them out twice daily and take them as a sacrament, knowing they are essential to my continued functioning. Knowing without them my brain would slowly destroy itself, seizure by seizure, unchecked. They’ve been working. Why they aren’t…well, I’m assuming it’s my stress level. Take the situation over my father’s health (he’s dying and at the hospice level now, I’ve been in the health advocate position) plus a pile of other stress factors I won’t enumerate here. It’s just the load factor.
I hate my dependence on the meds. I have anaphylaxis reactions to four major seizure drugs out of the top thirty or so used to treat epilepsy, and this removes entire classes of potential drugs as options. I.e. since I reacted to one, I’ll likely react to it’s sister drug, so it’s off my option list. Aren’t I special? I despise how my seizures are difficult to manage. Thus, I get more pills, a complex cocktail.
On a recent visit my neurologist proclaimed my insomnia too risky and in need of treatment. I couldn’t disagree, but I cringed. I got more pills. At least this time I didn’t spend days trying to itch my skin off, the first try worked. Total win! Surprisingly, my body not only accepted the med, but required a ridiculously high dose stop the night seizures. Again, WIN! Wait, huh?
Sadly, the joke’s on me. I’m still a borderline insomniac, but the nightly seizure-prone states are gone. Win? Even better, when I awaken in the morning I’m dizzy as hell, have slurred speech, and have the memory and vocabulary of a gnat. If you didn’t know you’d think I’d been out on a bender by how I stumble about in the morning. It takes a good twenty minutes or more for my brain to kick into gear.
Yeah sure, some of you are already senile or drink yourself silly nightly, so this doesn’t sound weird to you. Whatever. I was used to more, and this is a rant. Let me have at it.
Unfortunately the high levels of the new drug make the big drug less tolerant for me, and again all food tastes like blood or iron. And sometimes it’s like I’m chewing on blades, not that it matters, I suppose. The neuro has explained that my facial nerve gets all tweaked out on this big med, thus the all food is metal/blood reaction. I have no idea how I manage to maintain weight with this combination, but it’s darkly amusing overall. If I were a vampire then food tasting like blood would totally work out for me, but this is the really real world, and I’m not. Boo.
So yes, I’ll count out the cocktail of prescription pills and the handful of vitamins my brain needs without question. And I’ll feel like an uncoordinated imbecile every morning. Yes, just hand over the pills. Go ahead. But I’ll still rail against the bonds which tie me to these side effects. Just because it’s necessary, just because I accept it, just because I’m grateful I have a solution, I don’t have to like it.
So yeah, I hate pills. Don’t ask me to be happy about it. What I want is a cure. Not more fucking pills.
Yet I have to go back to my neuro again, and likely there will be more pills, more side effects. Imagine the look of joy upon my face at this prospect.
I’m over it. I’m headed to yoga. I did it years ago and loved it and was super mellow then. I’ve also heard good reports from other individuals with epilepsy that yoga helps them delay and/or prevent seizures altogether. Yeah, perhaps it sounds like I’m grasping at straws. Or in this case, stretched out toes. But I’m learning I can’t rely on medications and vitamins for my seizure control. Sure, they help, but they aren’t a 100% solution.
I’m tired of waiting for a solution. I’m going to make my own.
I don’t usually do this. I generally don’t feel the need to carry on about my epilepsy.
Today is different. If you’d rather pass on this one, feel free to do so now, cause I’m going there. This is why I’m writing a book about my Temporal Lobe Epilepsy. Well, not the only reason, but you’ll get the drift.
Back when I was first diagnosed I shared my news with friends and family I predictably got tons of support. I took medication after medication until I found the magical mixture which controlled my symptoms. Nearly a year later I felt I’d finally gotten a hold of the beast.
Of course there’s always someone who treats you differently after a ‘big diagnosis’. This time it was a family member. They’ve been odd about it from the get-go and have been consistently treating me like I’m still sick, ill, and convinced that my treatment is very ‘day-to-day’ unstable.
I finally asked my husband, what the hell, cause this is on his side of the lines, and he clues me in: this person interpreted my epilepsy diagnosis as insanity.
Yeah, you read that right. Epilepsy = Insanity. I, predictably, drank another glass of wine, and then elucidated to those present how “crazy” that theory was. But then I slowly understood.
You see, I was diagnosed with temporal lobe epilepsy, expressed by both focal and absence seizures. This is a fairly uncommon form of epilepsy. It’s not tonic-clonics, mind you, so I don’t lose muscular control and get my groove on. None of that, no, that would have made diagnosing me about one thousand times easier because it’s what doctors are more used to seeing. Even my absence seizures weren’t very pronounced, after I started to fall flat on my face and almost crashed my car. I mean, I ‘spaced out’ on people, and they no doubt took it personally. (So yeah, if I’ve ever just been looking off into the distance on you for a moment and you couldn’t get my attention, and then I was back and had lost the train of thought in the conversation, I’d just seized on you. Surprise!) Not as obvious as falling on my face while walking, but we’re not always walking around, right?
Anyway, my absence seizures only accounted for a small percentage of my total seizures, the majority were focal seizures. My presumed ‘insanity’ is related to my focal (aka Simple Partial) seizures. Here’s a helpful definition from wikipedia.org to help clarify the heart of the matter:
Simple Partial Seizures (SPS) involve small areas of the temporal lobe such as the amygdala or the hippocampus. The term “simple” means that consciousness is not altered. In temporal lobe epilepsy SPS usually only cause sensations. These sensations may be mnestic such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity), a specific single or set of memories, or amnesia. The sensations may be auditory such as a sound or tune, gustatory such as a taste, or olfactory such as a smell that is not physically present. Sensations can also be visual, involve feelings on the skin or in the internal organs. The latter feelings may seem to move over the body. Psychic sensations can occur such as an out-of-body feeling. Dysphoric or euphoric feelings, fear, anger, and other sensations can also occur during SPS. Often, it is hard for persons with SPS of TLE to describe the feeling. SPS are often called “auras” by lay persons who mistake them for a warning sign of a subsequent seizure. In fact, they are indeed seizures. Persons experiencing only SPS may not recognize what they are or seek medical advice about them.
Also, note the last line of the above description. It’s why I didn’t get diagnosed for so long. It’s not that I was a dope or anything, I just didn’t realize having déjà vu six times a day was unusual. Right?
Now you get it, don’t you? Do you? Everything in that list is something I’ve experienced, and my family knows this. Now you know it. No seriously, reread that shit. Everything there is intimately familiar to me. I can tell you jamais vu is the worst. Imagine looking at your family or friends and having no emotional connection to them. Oh yeah, be happy those seizures only last for thirty seconds to two minutes on average. At least they pass quickly, and then the fantastical quasi-reality passes and I’m left feeling hung over with a headache and happy it’s over. Whew.
Let’s be very clear, I know when I’m back to what’s real. What’s ‘normal’. Traditionally your actual crazy people don’t know have this distinction. Before I was diagnosed I rightly feared my ‘episodes’, not knowing what caused them, when they’d come next, or what they’d look like. Sometimes they’d be fun and wondrous, and secretly I lived for those. Mine was a spectacular, if terrifying world before medication.
Am I insane simply because my brain functions differently than yours? We’re all quirky and different and I don’t call you crazy when you can’t match your socks to your shirt. Yeah, occasionally my reality slips. So what? I’m sure you’ve got imperfections too. I’m not holding those against you, am I?
And yet, to this one person, I will forever be insane because of my diagnosis. There’s no reasoning there. No changing of minds. I over-shared on my symptoms into the realm of things ‘crazy’, and now I can’t go back. What’s done is done, and I am now looney tunes. On the upside, I suppose it does afford me some laxity of behavior at future events. I mean, hey, I’m a wack-job, after all, right? What freedom…
I’m not afraid of the stigma of epilepsy. No one with this condition should be afraid either.
If you’ve hung in this far, thanks for reading. Anyway, yes, I’m outlining a book on my experiences with Temporal Lobe Epilepsy. I hope to dispel the idea that people living with this disorder are in any way crackpots and generally give insight into the condition. And not from some doctor’s point of view, who’s simply known many patients, but from the mind of the patient. Perhaps it’ll be useful, or perhaps it’ll only serve to confirm my stance as an insane person. Whatever. It needs doing.
I’m a writer, after all. It’s what I do.
Oh, and as a footnote, there’s a number of artists and writer’s who’ve been diagnosed or suspected to have had with Temporal Lobe Epilepsy. There’s something about it that fuels the imagination and forces people into creative outlets. So please don’t feel a damn bit sorry for me and my brain that runs on a different wavelength than yours. It’s helped make me the awesome, creative, and unique person I am today.
Most of the time my life is fairly normal. I don’t mean this in a bad way. My life is awesomesauce, and I adore it.
Occasionally, things ratchet up unpredictably, and I have my epilepsy to blame. This is one of those moments.
The other day I was riding the train home. I’d felt normal all day, no warning signs, nothing felt off, everything was par for the course.
I was reading a book on my phone, surrounded by passengers. Again, nothing out of the ordinary. This is a boring story. Yes? I could describe the boringness of the ride and the passengers around me, but trust me, the only thing of interest was the book I was reading.
The first thing that’s non-boring? I can’t read because the words all scramble up. And although the book is super-awesome, it’s not *that* amazing. I also notice an incredibly clear feeling in my body. It’s like a bell has gone off in my head.
And I know ‘it’s’ happening. That’s the only warning I get. It’s always the same, at least for a focal seizure. Note, these aren’t absence or tonic-clonic’s. I’m right there, conscious, and aware, the entire time. I’m just along for the ride. And by the way, I don’t get to pick the ride, it picks me, and it’s always different. Imagine getting on an amusement park ride, but never knowing what will happen past the first turn, yet the ride’s gonna last thirty seconds to two minutes.
You may not realize it, but there’s this pin in the undercarriage of your reality that holds everything in place. Mine just fell out and hit the floor, and the separate dimensions of my lenses slip and slide over one another, distorting what I used to hold to the status quo. Welcome to my life.
I turn off my phone, cause you know, I can’t read moving words. Everything’s moving in super slow-mo, which is fantastic, because that means those two minutes will go by even slower. The train stops at a station and a lady steps on board, and I fixate on her ears, which are misshapen. She’s obviously an elf, dwarf, or something, and everyone else knows it.
I hide my face in my hand. I am not going to react. None of this is real.
The train starts to move, and I look out the window. A group of teens is walking by, and one of them carries a full head mask with hair on it. I look up to his head. He no longer has one. It’s been replaced with a blurred, black void.
I hide my face in my hand. I am not going to react. None of this is real. How much time is left?
I look out between my fingers at the balding man across from me. He’s been diligently reading a book on military history. He takes the opportunity to extend his neck and smile at me in a fetchingly reptilian sort of way.
I hide my face in my hand. I am not going to react. None of this is real. How much time is left? Please. Please be done now?
The man next to me coughs, and the woman standing next to him says something to him, and then looks in my general direction. Have they noticed that I see everything?
And then life suddenly clears as we reach the next train stop, just as enigmatically as it started. My head aches like I was run over by the train, I feel nauseous, dizzy, irritable as a wolverine, and I’m cursing myself for not having any water on me for taking my aftercare meds.
I look around, and am happy no one appears to have noticed me behaving oddly. That’s one of my biggest concerns: when my medications fail me, I won’t be able to control my reactions. The other is that people will misinterpret seizure activity for mental illness. I can’t control others desire to rush to judgement. All I can do is contribute to awareness and education, and hopefully add in a bit of humor in the process.
I’ve seen a few posts lately rightly defending a woman’s right to her size. And yet, the fight goes on. The message just doesn’t want to sink in. Please humor me while I throw in my two cents.
See, I’m a skinny bitch. And just so you know, it’s not easier for me on this end of the spectrum. There. Feel better?
Oh, I see you don’t. Let me explain. There are myths everyone believes only larger women face. See, smaller women face them too. Now, I know larger women get more abuse, don’t get me wrong, I’m not belittling that at all. But seriously, the general public has no idea why a person is the size they are unless they’re wearing a t-shirt for a cause. I’ve always been moderately slender, but epilepsy meds and their impact on my appetite have made me moreso. I have a friend who is skinny due to her thyroid issues, not by choice. And upon reflection, I’ve found the issues of the skinny mirror those of the large.
So for your review: The Issues of the Skinny Bitch
1) I can never find clothes in my size, because the stores/manufactures are biased against people of ‘my size’. To find anything that fits I have to go to special stores. Yeah, I hear yah! Large women get to go to Lane Bryant, and at the worst you look matronly. Wee women go to stores that make you look like a ho. No, seriously. Thus I go to Old Navy and the like, and hope I can find a few size 2 and 4′s on the shelf. Occasionally I get lucky, but the pickings are far and few between, and never in the colors I want. *sigh* Oh, and shirts that fit me are loose in the bust. That won’t happen to you nice busty large women. If I want things to fit, I have to pay a tailor.
2) Skinny girls don’t have to put up with the verbal abuse we large(r) women do. Oh, really? Yes, I’m well aware of the hate speech large women are subjected to, I’d be an idiot to say I didn’t overhear it on a regular basis, and yes, it’s criminal. But just so you know, even if you got small, you’d still be subject to hate speech. I’ve had a coworker allude I was anorexic, a friend tell me I was ‘wasting away’, and I’ve been told I need to ‘eat a sandwich’. Seriously? I eat five times a day, and I still don’t have a B cup. WTF? When you’re thin other women will tell you they hate you as a backwards compliment, in theory to make you feel ‘better’, but have no illusions, it’s an insult and only reveals jealousy and baggage on their end. Other choice terms overheard: chicken legs, stick figure, Olive Oil.
3) I’m always having to buy new clothes. Don’t I know it! You know, when your weight fluctuates by five or ten pounds, regardless if you’re small or big, you seem to hit a new size on the clothing rack. Why is this? What are you supposed to do, go out and buy a new wardrobe each time, or have a range of sizes? Well I have a range, and own a number of belts. Sometimes I wish my pants came with those built-in adjusters like my son’s do, where you can pull in or loosen up the elastic by a few buttons if need be. Why not for adults too?
4) If I can just lose/gain weight I’ll be happy. Yeah? And after you lose 10 pounds, are you just going to want to lose another 10? Is there a realistic end point in sight? I certainly hope so. And by the way, when you lose weight, you lose your breasts. What I wouldn’t give for your large women C cups. Heck, a full A cup.
5) People dislike me for being large/small. Of course they do. If you’re large, no one wants to be around you because you’re an example of someone who can’t control their excesses. It’s disgusting, right? And if you’re small, well then unjust jealously sets in, because how dare you be the epitome of being able to control yourself (when they can’t)! How dare you! Yeah, either way you’re doomed, and you can’t win. Whatever your issue is, don’t feel compelled to take it out on me. I’m not your issue. You are. Next, please.
6) I am perpetually hot/cold. If you’re large, your fat layer means you’re nicely insulated, regardless of the time of year. (Invest in a hand-held fan during summer.) Conversely, if you’re teeny, you’re freezing your buns off, regardless of the time of year. No happy mediums here.
7) My metabolism sucks. If I don’t eat every couple of hours I crash, and it’s not pretty. My metabolism is super-high, and when I crash I get seizure-prone. So yeah, I eat often, because I have to, and I have to exercise and eat decent food to keep my body in balance. Now, if my metabolism was low, and I ate all the time, I’d gain weight. It’s simple math. Still, my metabolism runs like a train, and if I don’t keep up, it’s going to hit a wall. Hard. As it is, I’m happy maintaining my present weight. That’s my win.
In the end, the answer is simple: be happy with your body, whatever your shape, size, and form. If your body likes a middle ground, yay for you! Sure, if you doctor says to lose or gain weight, do so within reason. (Cause sometimes doctors are extremists too, IMHO.) And be as fit as you can be, cause I want you to live a long healthy life and keep reading my books and drinking my wine and laughing for a long, long time. Oh, and generally loving life, cause that’s what we’re all here for, right?
Perhaps, if we can get past this obsessive fascination over our weights, we can focus on some deeper issues? For instance: Where our food comes from? What’s in our food? How humanely are we treating our food? What chemicals and hormones are added to our food, and how does that impact our bodies? And what are we, besides this one factor known as ‘weight’?
This is an excerpt from Living with Shadows, my collected stories about living with Temporal Lobe Epilepsy.
I sat inside reading a book, likely a Madeline L’Engle story, I read those over and over back then, when I lost focus on it. I kept trying to read, but the words wouldn’t stay together, or I couldn’t keep my mind on the task, I was simply and suddenly too agitated. I was 15 or 16 at the time, I’m not exactly sure.
And I felt the nudge. This is all too familiar to me now. You don’t ignore the nudge. There was something it wanted to show you.
I told my mother I was going outside for a while, and I wandered into the backyard. We had a wonderful backyard in the house on Cornell Street, full of flowers, bushes, trees, a small garden with fruits and vegetables. But today, I felt fuzzy and out of focus. I stumbled off the back porch, down the back sidewalk and into the middle of the lawn. I was nudged again into the shade of the massive birch tree. I veritably collapsed onto the ground, drawn to lay myself out and bask in its shade.
Lying there, at first all I felt was the itch of the grass on my skin, and the warm summer breeze blowing across my skin. A bumblebee buzzed by, unconcerned with my presence. Perhaps I had imagined the nudges? But no, I’d learned to be patient. The nudges came, the physical sensation of being pushed, or kicked, or well, nudged. And then the odd awareness of ‘something’ coming, and I’d perk up. Whatever the puzzle piece, I had to pay attention. I had to make sense of it. It was essential. I’d learned this. I didn’t know why, but I knew, if I was ever to make sense of what was going on, I had to pay attention.
Suddenly, my consciousness shifted without warning. My mind left my body and spread out like butter across the surface of the birch tree above me. Before, I’d noticed how it swayed in the breeze. Now, I swayed along with it, dancing as it did with the other trees in the vicinity. I felt the commingled pollen amongst the trees; saw the little messages passing as wavelengths of energy. I read those messages, understood them, and laughed aloud.
The sun broke through the clouds, and the tree sighed with appreciation as it lapped up the rays eagerly, the energy flowing into the heart of the tree, storing to feed and nurture the future seeds. I fed on the sun, took it into myself. Water sucked up from the extensive root network reached to the tip of every leaf. I felt the tree breath out, and I breathed in its breath. I felt like a speck of disconnected dust next to this massive creature, dug as it was into the earth and interwoven across the skies to its brethren.
As the moment began to fade, dissonance crept in. I tried to cling to the tree. I’m with it one moment, and the next it’s shattered into a million pieces, and I’m nauseous, confused, dizzy, and my tongue tastes metallic. Sometimes I forget where I am, or what I was doing beforehand. The degree of disorientation varies. I get up, and go back inside. I was clumsy afterwards, but not for too long.
It’s inevitable on the pleasant moments, I don’t want them to fade, but I always try and hold on. It doesn’t matter, they last a set period of time, I don’t get to pick. I’ve learned this over the years.
Over the years I’ve often felt driven to write. The need is a form of possession, stemming from these visions, dreams, and concepts that slam into me, often in the middle of the night, with such raw power that I am unable to withstand them. When I give in and let the stories unfold it’s so much easier, because I’m not fighting it. I’m riding the wave of the ecstatic process.
Sound familiar? Of course it does. All writers describe the creative process in much the same way. But something happened to me last year that made me step back and reevaluate my relationship to my writing and creativity.
Last year I was diagnosed with temporal lobe epilepsy from a head trauma when I was ten years of age. I’d fallen off a horse and went boom, broken my arm, and lost consciousness for a time. My arm was addressed, but the doctors didn’t seem to care about my head. See, there was no obvious damage to my brain and this was the 80′s. I didn’t have gran mal/tonic clonic seizures, nothing pronounced, so my brain was ‘fine’. In effect, no one noticed.
But I did. My brain had odd quirks afterwards, but my ability to articulate the differences was difficult, and I didn’t know any better. I went from a sloppy kid to a neat freak overnight. Occasional very brief petit mal/absence seizures left me reset, confused, and having to catch up in the conversation, irritated and wondering why I’d spaced out. I had déjà vu all the time. The seizures also caused me anxiety and irritability due to the aftereffects of the episodes on my brain.
Did this slow me down? Heck no! I’ve had a very successful career as a computer programmer, opened a small winery, and I’ve published one book with more to come. The worst of the epilepsy only caught up with me last year, when I’d finally pushed the wiring past the breaking point due to stress and the petit mal’s grew in duration to where the disorder was finally diagnosable. Yay?
So now when I go back and remember the inspiration for my first published book, Ripples, things look a bit different. I was staying with my immediate and extended family at a beach house in Watsonville, California. I’d awoken in the middle of the night ridden by a ‘nightmare’, of an unknown, tentacled entity reaching out from the wall intent to abduct me away. This was the inspiration for Ripples, and, in retrospect, I recognize this was not a simple nightmare, but a seizure, for I was fully awake. Some of my seizures work that way, with vivid imagery I just can’t shake. Gratefully, they don’t last for long. But when they happen, they are incredibly and deeply detailed.
I am presently editing the first book in my Depths of Memory series. In this sci-fi series a human colony races to prove themselves and survive before more the powerful races can declare their attempt a failure and scrub the planet for higher beings use. In this book the main character, Rai Durmah, suffers from amnesia because others are trying to hide her try identity due to the crimes she committed. Unaware, she seeks to rediscover herself, not knowing she’s racing them all into the path of destruction, which will cause cascading houses of cards to fall. I think my desire to incorporate the amnesia into her role, which is certainly integral into this series, comes from my research into trying to understand the lapses in my memory over the years due to my absence seizures. Oh what a tangled web we weave!
So, in the final analysis, does epilepsy make me more creative as a writer? Certainly no more so than any other human, but I feel it’s driven and pushed me along a different path than others. We are all bound to find our own unique paths along our journey, and this has played a role in mine.
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