brightlotusmoon: (Asha)
So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - who shall remain the besy family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.
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: [livejournal.com 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.

*THAT* SHIT IS INSPIRATIONAL.

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)
Another bizarre, color-based fantastic dream last night.
I was walking through a small town full of colors of all kinds. I had my handbag on me and I wondered if I could practice any magic with my cosmetics. However, the eyeshadows from the previous dream were gone.
An older woman came to me and said, "I know what you need. The powders you were using are limited. But these are not. I give these to you as my gift, freely, with no expectations. They belong to you."
She handed me two eyeshadow cases. I recognized them instantly - I own them in the waking world: Too Faced Exotic Color Eye Shadow Singles in Poison Orchid and Midnight Mist. I frowned and stared at her, realizing that her eyelids were painted with a blend of the two. I asked, "Are these stronger?"
"Oh yes," she said. "They heal and harm, create and destroy. Use your finger or a shadow brush. Wear them blended on your eyelids and you are immune to anyone who tries to use magic in a negative or destructive way. Swipe one on each wrist and your own magic will be increased. Wear them any which way you wish and you will be stronger. There is always power in color. Do you wear the red lipcolors that the Art Goddess gave you?"
I tilted my head. "I don't know. I own many red lip shades."
She smiled. Then you probably do. Do you know the names Provocateur, Hot Mama, Pretty Woman, Ruby Slippers, Stiletto Red, Wild?"
"Oh!" I said. "Oh, yes! Buxom and It Cosmetics and Too Faced and Tarte! I always feel drawn to them. Um, pun intended?"
The woman laughed, and her dark blue eyes glowed. "These eyeshadows are Too Faced and the names are no coincidence in this dimension. You come here very often in your dreams." She peered closer at me, nose to nose. "You are wearing Tarte Maracuja Concealer and It Cosmetics Concealer. One day, you will see the true complete beauty, and you may not use so much."
I smirked. "Are you a psychiatrist?"
"Sort of," she laughed. "Empathic witchcraft has advantages. You use color and cosmetics as both enhancement and costume. That is perfect and good. But you must remember that you, as you, are always beautiful."
I took a very deep breath. "It will take a while."
She reached out and pressed her palms against my cheeks. "You will know. You are loved."
It seemed as though she were about to walk away, but she paused and looked at me again. "The Too Faced Lipstick in Stiletto Red and the Tarte Lipstick in Wild. Use them to draw your personal magical symbols where you need on your body, when you come into this dream dimension again. You will understand why once you walk through our town."
I nodded. "And the Too Faced eyeshadows?"
"Oh, you know how they work!" she laughed. "You could even just open them and point them at the sky when you need to destroy your monsters and horrors. Midnight Amethyst and and Midnight Sapphire are designed to work in moonlight, sunlight, and all elements."
I realized that nothing was enigmatic anymore. I started laughing. Behind me, a gateway opened. I stepped back, waving at my companion. She held out one hand, fingers spread wide, and passed a golden-silver stream of light to my hand. I laughed loudly, and the gateway gently wrapped around me and pulled me through. It took a while for me to wake up. I suppose I could call it dream limbo. Light and shadow, color and negative space, filled with serenity.
I will go back. It is my town, after all.



The makeup in this photo:
Too Faced Exotic Single Eyeshadow in Poison Orchid, Midnight Mist
It Cosmetics Hello Lashes Volume Growth Mascara
It Cosmetics Vitality Lip Butter Gloss in Ruby Slippers
Tarte Maracuja Creaseless Concealer

Front facing smartphone cameras with anti-shake technologies are so freaking awesome for disabled people!
brightlotusmoon: (Pixie Model 2)
I don't think I want to leave my house without psychic witchcraft protection all week, because within the next few days there will be scary things everywhere, and I don't give a fuck how plastic and fake they are, I still hate them. And I will bring a pillow to press against my face and I will threaten to beat anyone with my best cane if they try to get in my face with scary costumes.

*loves Samhain, hates Halloween*
*is so close to the realm of the dead anyway that there is absolutely no need to dress up and pretend anything because the veil is close enough to touch*

I don't know if anyone wants elaboration on that.

I will say that I nearly died several times during and after birth: my three months premature birth happened at two minutes to midnight under a waxing gibbous moon and an evening star. My personal magic is more orderly than chaotic. That is, it is a gentle and static magic rather than a wild and intense magic. Both are needed, both must be braided tightly as a unit, but I can only work with one at a time, or there is pain.
http://www.kakophone.com/kakorama/EN/astrology-horoscope.php/1979/4/6

I may discuss more if there is interest.
After my post seizure post-ictal state soothes, and after I rest, and after I sleep.

Any discussion of blood, gore, zombies, decomposing corpses, hideous death, and living dead will be met with silence, side eye, eye-rolling, and growling. (Vampires are okay, as long as they appear human.)

The harvest is coming. Time to drink cider!
http://www.thewhitegoddess.co.uk/the_wheel_of_the_year/samhain.asp

I was recently given a private reserve skin cream on Etsy that the
owner, a fellow witch, picked out the name "Moonlight Witch" from my
list of possible names. It smells and feels amazing and makes me feel...
well, at home! Plus, I feel more comfortable and charged up when I do
pagan rituals under moonlight.

Moonlight Witch Gypsy Body Creme reserved for Joanna:
Cocoa Butter, Shea Butter, Olive Oil, Grapeseed Oil infused with powerful extracts of Blue Lotus Absolute, Dragon's Blood Resin, Amber Resin, Coffee Extract, Coffee Grounds, Coconut Flakes, Frankincense, Myrrh.
"She walks the path where moonlight shines, for it is there her strength she always finds."
brightlotusmoon: (Default)
I don't know why I've been treating my online places as confessional kinds of things, but I have so many friends here who know me and understand me that it is hard to not talk about things.
I have been having issues with Body Dysmorphic Disorder again.
That is all.
I am working it out. Klonopin and therapy and exercise and pampering really can help my personal issues. It is difficult to talk about OCD problems sometimes, especially if it sounds like white whine, but I don't know what else to say about that.
I wish I could open up and talk and talk for hours, but right now I can't. My throat feels raw. Eating is not as much fun. I will see how my mind is tomorrow after I wake up and do my usual medications and meditations.
Also, sometimes when I leave the neighborhood, my brain opens up to all kinds of paranormal things, and I let some of them in. Sometimes they are very comforting. I know our home is well shielded, but there are so many times when I want to go out there, drop my shields, and shine like the weird paranormal beacon I apparently am, just so I can say hello to other dimensions.
I am glad I was raised to be skeptical. It helps me see everything from every angle and make my own decisions without strong external influences.
brightlotusmoon: (Default)
Sigh.
So, that was either a very weird complex partial seizure or a rare psychic experience. Or both. Regardless, I'm off to take some medicine and rest my brain. I think I used too many spears.

I do not remember much. What little I can recall involved synesthesia turned up to eleven when I closed my eyes, hyperactive shapes and sounds rushing into my brain, and a deep sense of expansion far beyond anything I could describe - like being in a craft flying toward outer space itself; a sense of G-forces pressing me down until I spiraled into darkness and then saw nothing but brilliant dots of light and sensed nothing but trillions of unexplainable entities, everywhere, all at once. There was so much heat and cold simultaneously, blackness and ice and fire without air, crushing me into a bare essence of a sentient being. It was as though I were coming apart atom by atom. I was screaming without sound. When it stopped, I couldn't hear, see, feel, or speak for a minute or two. When I managed to open my eyes, I was lying twisted against the back of the couch, gasping heavily, sweat pouring down my face. I truly do not know what happened. I am struggling to hold on to even a tiny bit of that memory, but it is fading even as I write this. I'm sorry.

The transcript for the Futurama episode "Godfellas."
Bender's conversation with the God Galaxy is the main reason why this is one of my favorite episodes. It is also part of why, ten years ago, I declared myself a pantheistic polytheistic polyagnostic eclectic pagan witch who observes humanistic paganism and spiritual humanism. It is also part of why I am convinced that magic and physics go together like limes and coconuts.
http://www.futurama-madhouse.net/scripts/3acv20.shtml

FYI, this particular postictal state (after seizure state) has me somewhat energetic and verbose as well as mildly hypergraphic, despite the migraine and burning muscles and spastic limbs and aching nerves. I am going to try and direct that energy into writing chapters and stories now. Questions are welcome.

I also wanted to add a photo. I have gotten into a habit of photographing my face after certain seizures, to document the physical aftereffects even if I am the only one who sees them. I have a few friends in the medical industry who might understand why I do this. One such friend mentioned that in this picture, my usual spastic imbalance due to cerebral palsy is not there, meaning that the seizure wore me out so badly that my facial muscles went fully lax and exhausted, with no spastic hemiplegia on the left side. My normal is gone right now, turned into everyone else's normal. It does make me sad, because now I don't look like myself; I look alien. My face doesn't look imbalanced or shifted or compensated. That seizure obviously took it out of me, because I am also fatigued and lethargic beyond description.
But this is very good to know, so I can keep an eye out for future seizure effects.

brightlotusmoon: (Default)
Adam and I took advantage of Venus' last hour across the sun. We did a private pagan ritual, charged my amber bracelet, made love and played with magic, discussed magic, and then discussed the fact that my psychic senses were much stronger than usual. Adam theorized that because of how I entered the world, I've always been deeply connected to the spirit realm, as it were, and to some psychics and magic practitioners I seem intensely bright and shiny while to other practitioners I seem dim and closer to ghosts; in any case I seem to have an ability to sense and attract supernatural and paranormal energies. I used to be like shiny candy when I was in college. When my friends went on "ghost hunts" they took me as a sort of bait. Adam says I shouldn't be frustrated that I don't actually know what all my talents are, and that nobody can tell me except myself. Which actually is frustrating, because beyond the sensing and attracting, I have no clue.

Anyway, enough magical thinking gibberish to make skeptics laugh forever, I have actual reality to think about for this post. Well, other than wanting to open a discussion about Humanistic Paganism which I include in my wild menagerie of weird beliefs (agnostic polytheism, pantheism, eclectic paganism, humanistic paganism, shamanism, animism, cosmic consciousness, transpersonal psychology) that are probably contradictory, but whatever; I refer to the great speech in Neil Gaiman's "American Gods" in which Sam tells Shadow what she believes, which is lots of very awesome things.

Yesterday, Adam and I went grocery shopping specifically to sustain me for the next two weeks, as Adam will be working in other states too often to come home. Today he goes to Pennsylvania and returns on Friday, but after that I probably won't see him for most of June. The cats and I should be perfectly fine, and if I need anything I can call a friend to help.

I can't talk about the death of Ray Bradbury yet. It will make me cry again. I will go through my library and pull out every Bradbury book I own and pile them up and sit there, watching them and meditating, and then I will read all of them, one by one.
brightlotusmoon: (Default)
I'm drinking a vanilla latte, back at my desk, after lunch break...

I had an incredibly realistic dream last night. I walked into the bedroom; the lights were off and the TV was on, and bathed in its light was Adam, lying in bed. Petting Tuesday. She was curled up against him.
I stopped dead, stunned, stared, and stammered, "She's dead. What is she doing here?"
Adam just looked at me and smiled. "Oh, she just appeared while you were in the bathroom. I can't touch her unless she touches me. Here, come here."
I came closer. Tuesday looked faded, like a ghost I suppose. She looked up at me with a happy expression. She trilled and chirped at me. I reached down but my hand passed through her. "Let her touch you," said Adam. I kept my hand just above her. She headbutted my fingers. And I felt her -- soft and full and real. She wasn't warm or breathing, but she was purring, and she let me stroke her, and she brushed her face against mine. She licked my fingers, and her tongue was cool but rough and real.
In the manner of dreams, then, we were downstairs in the living room. I was lying on my stomach, letting my baby girl rub against my hand and arm, my face. As long as she was the first to make contact, she was real and soft. And yet she was dead. She was a ghost.
But I got to love her. We got to play with her. It was enough.
I haven't told my husband yet. I'm sure he'll appreciate it. I believe the dream had been inspired by our conversation last night, in bed. He had been touching Tuesday as the syringe had been administered, and holding my hand as well. (One of Adam's "psychic" talents is the ability to draw and absorb spirit energy: on his last trip to the Grand Opryland Hotel in Nashville, he had encountered the angry ghost of an old woman who had lived on the land and had not wanted the hotel built; she had been haunting several of the rooms for years. Adam walked into the room she had been in, and "ate" her, and drew her energies into himself and made them his own.) After he had absorbed Tuesday's spirit, he had passed some of it into me, through our hands. I think it had formed some sort of bridge. She came to us in my dream across that bridge. So, in essence, literally, she is with us.
A theory. A nice, comforting theory.

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