brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Day after seizure with migraine:
Still working through recovery from seizure and migraine.
Allergies and fibromyalgia flare not helping.
I shall go read books and watch cartoons!
brightlotusmoon: (Snow White Blood Red Light Pale)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

From: [ profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.


So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.
brightlotusmoon: (Snow White Blood Red Light Pale)
You guys, I amaze myself. I've been writing helter skelter all over the place: Novel, stories, novellas, blogs, facebook, notebooks with various pens, everywhere... in the middle of a postictal migraine and insanely horrific agonizing chronic pain flare-up following recovery from a panic attack. If I didn't have a computer or paper I might write on the walls. I hurt so badly I have no idea what I'm doing. I feel half fire and half water. Wild and raging, and all I want is a crackling bonfire and a rushing river.
I doctored up a photo of myself and it came out half gold light and half blue light. It looks inhuman. But part of me adores it so much. My face is two different parts. I am two entities in one. When I burn, I am cool. When I am cool, I burn. It is ying yang, dragon phoenix, up and down, left and right, I don't even know. I don't speak out loud except to my cats, I just speak through Story. So much Story inside me.
That rock. That rock that my husband gave me, the rock that he held while standing in Room 217 of the Stanley Hotel, in which Stephen King wrote "The Stand" and used as an inspiration for "The Shining". That rock is still next to my laptop. I am covered in words. I am filled up with Words. I may disappear into Story. I may not even see the world until I have to.
Is this what it is like to live in the land of the Fae and then come back to the land of humans?


Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.
brightlotusmoon: (Snow White Blood Red Light Pale)
I am starting to officially read "World War Z" by Max Brooks. I don't know if I can. I'm not joking. I may need Klonopin. I'll have to skim and speed-read.
I know people don't really understand super irrational phobias like this. I know fear is a basic and intangible biological, evolutionary reaction, that it can keep you moving, that it can help survival. But irrational fears are... I mean... you know. They hurt. They damage. They are inexplicable. No amount of "Oh, get over it" can soothe irrational fear.
But I'm only at Tel Aviv and I'm shaking. I know how the book progresses, I know what happens, I know about Yonkers... through wikis and reviews and recaps and summaries. But I don't know if I can sit down and actually read the whole thing as it is.
My mind is so odd in that way.
I suppose this is a high praise and testament to Max Brooks's talent. But this is one of my absolute violent fears printed on paper and bound between covers. If I can make it to the end of the book - fuck, if I can make it through Yonkers - maybe I will be okay.
I just need to remember that any nightmares about living corpses stalking me are just dreams. To quote a beloved and wise friend: "being afraid of anything is bullshit... fear cannot hurt or touch you - put it in a box and stuff it the fuck under the bed." It is a powerful kind of truth.
It doesn't work in some situations. However, in my own case, it is the truth. To "be afraid" is to react. Everyone has a fear, multiple fears. But not everyone is afraid. Fear serves a very important purpose in evolution and biology. But fear is not the creature coming to hurt you. Fear is the response. Not necessarily bullshit. But not always needed, either. Fear can be worked with. Fear can be stared down. Fear can be danced with. Fear can be used. Fear can be weaponized. Fear can be altered and manipulated. Fear can be conquered.
Unfortunately, when I am smack in the middle of fear, I forget that.
I have been afraid of stories before. My imagination is active beyond reason. One of my recurring nightmares features a rotting, moving, gasping human corpse crawling onto my bed, reaching out, and stroking my face. This is why the television series "The Walking Dead" is essentially the stuff of my nightmares, and if I stumble across a GIF or macro of one of its zombies, I freeze in terror before scrolling past or closing the window; the fact that it is only makeup and corn syrup and costuming means nothing at all.
Therefore, BREATHING.
brightlotusmoon: (Snow White Blood Red Witch)
You know, sometimes you write something so bizarre and wild that you need to copy-paste it just to see how people would react...

But I feel better. It might just be the Klonopin, but I feel better."

Long story. Long story short, I have a debut book that needs finishing and then editing. Also, I am on painkillers, muscle relaxers, anxiety relievers, and supplements, and also possibly too many cat kisses. I think those in particular can lead to strange behavior.
Good night.
brightlotusmoon: (Default)
I don't know why I find this so strange, but this is my brain:
During these post-ictal severe pain states, I tend to be quite verbose and effusive in writing much more than I am in verbal speech.
Talking with my voice becomes mildly improbable, weak, abstract, and inept as I stumble. But in writing, my brain can move quickly, pause to check itself, and encourage my fingers to pull forth just the right words.
Naturally, my parents frown upon my constant use of the internet's social media to communicate, including email, because they want to hear my voice, which they call mellifluous. But there is no dulcet fluidity in a voice whose owner has been struck with temporary neurological damage.
However, sometimes communicating via writing, typing, and online social media really is just that much more powerful. And it gives my mouth and throat ample time to rest while those complex speech areas of my brain that had been momentarily damaged can gather themselves and become once more coherent.
It really is very embarrassing to speak out loud and find my words too jumbled, my tongue tripping up, my emotions spilling over until my voice cracks because I cannot convey what I need beyond the simplest of words in the manner of a fairly intellectual toddler.
Even when I have been hit by those neuron storms, words are very easy to find. Making sure others hear those words in the context I need can be so difficult that I bring myself to tears.
I am certain you know what I mean, friend's list.
brightlotusmoon: (Default)
Prompted by a very odd debate on a cerebral palsy forum. I have no idea why I'm writing this.

One of the words that makes me twitch is "handicapable." I feel angry when someone applies it to me. I can't properly describe why it angers me so much, but for me, the term "handicapable" feels deeply condescending, the way you'd blithely and sweetly pat a child on the head for doing something everyone already knows how to do. It's more complicated than that, but I can't find the proper words right now. Brain fog, maybe. Stuff hurts right now, no surprise.

If other people want to apply fluffy terms like "handicapable" to themselves, that's wonderful for them if it makes them happy. Many disabled people and their families need that specific kind of sunny attitude to get through everything. And really, I think that's fantastic.
That's not me.

I'm not going to sugarcoat my health. I'm handicapped. I'm disabled. I'm damaged. I'm broken. I will walk with a limp for the rest of my life. All the muscles on the left side of my body will be weak, spastic, tense, and stiff no matter how much freaking yoga I do. I have chronic widespread pain over every part of my body that affects every single system in my body. I have seizures that make me feel like Alice in Wonderland. I have three major primary chronic disorders (cerebral palsy, epilepsy, fibromyalgia) that will never be cured, and over half a dozen other medical conditions that cause a great deal of irritation on a daily basis. My neurology is surreal and very skewed. My brainbody connection is very damaged. I hold absolutely no illusions about anything, which is why I've decided to apply for disability insurance, because I'm not getting better and as I get older I will get worse.
I am extremely lucky that my conditions are mild to moderate. I am quite capable. I hurt all the time, and I am tired all the time, and parts of me will fail and collapse in different ways at unexpected times, but that just comes with the territory. I know how good I have it.
Which is also probably why the term "handicapable" aggravates and frustrates me. I'm handicapped. I'm capable. I do not need the two words smashed together like a frantic attempt at sweet social sensitivity. It feels slimy and unnecessary. The words "handicapped" and "disabled" are not bad words to be danced around or transformed into fuzzy word creatures to be coddled and cooed at. I am handicapped. I am disabled. I've been that way all my life. I've accepted it. It's not so bad, really.

I personally don't need political correctness or bright saccharine word confetti bursting around me to help me get through life.
What I want is for people to understand that I know exactly what's going on, and nobody has to sweeten things up for me. When I wake up in the morning and decide to do things, I do them. I hurt. I get fatigued. That pain and exhaustion will get worse or stay the same and I never know which. But I always do things. All the time. Every day. I don't lose sight of anything. I just do things because I have to do things, and I don't whine or complain, although I might mutter and swear and growl and snarl until I shove myself through the pain. I ask for help when I need help. But plastering a cheery grin on my face and shouting happy platitudes isn't really my style.
I can be cheerful, happy, bouncy, silly, adorable, weird, geeky, giggly, giddy, and joyful, while limping and being in pain and being fatigued and being disabled. It's not one thing or another. It's everything all the time.

I'm the only one who can live my life.
It's my life. I'm living it with every ounce of strength I have.
I am my own kind of normal.
brightlotusmoon: (Default)
brightlotusmoon: (Default)
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"Harbor" by Vienna Teng
"Her Diamonds" by Rob Thomas
"Ever The Same" by Rob Thomas
"Ocean Rising" by Justin Sullivan/New Model Army
"Queen Of My Heart" by New Model Army
"Ballad Of Bodman Pil" by New Model Army
"Whole Of The Moon" by The Waterboys
"Universal Hall" by The Waterboys
"Desert Rose" by Sting
"Valparaiso" by Sting

I didn't pick specific lyrics for these songs, because each of these particular songs, as a whole, send shivers down my spine and hit me emotionally.
brightlotusmoon: (Default)

I didn't utter a single "bad" swear word until I was a senior in high school. I never found any reason to, having no real friends outside of a scant few acquaintances. Some of my classmates actually started daring me to give them the middle finger, to say "fuck" or "shit." I think they found me to be a fascinating puzzle.
When I was little, my parents said "shit" and "fuck" around the house, and explained to me that most people didn't like when children said those words, so I just didn't say them, although I knew exactly what they meant in every context. My parents educated me well about that. My father, however, having been a Navy sailor in the late 1950's and early 1960's, made it a point to never swear even as his shipmates threw curse words around like confetti. He had instilled in me the understanding that those words were so offensive to most people that they were often forbidden, especially around kids. Even today, my dad gets easily shocked when he hears me curse. A couple of years ago when Adam and I were home for Thanksgiving, we were all watching Spiderman 2. There was a scene where Mary Jane was on a floor, about to be crushed by falling debris, and I just blurted out at the screen, "Oh would you just move, you stupid fucking cunt!" My father actually jumped a few inches out of his chair and his eyes got really wide. Adam and my mother burst out laughing. It really was funny. My dad finally saw the humor in it; he was just thoroughly stunned that his "baby girl" could curse that powerfully.
When I was a teenager, I was endlessly amused when friends of my parents told me to put my hands over my ears because they were "going to say a bad word" or that they'd say, "Oh, sorry, Joanna, I shouldn't have used that language in front of you." Even when I hit my twenties. I still looked like a teenager. Older adults didn't seem to realize that I was cursing like a sailor under my breath more than they knew.


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