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: (Default)

looking down on empty streets, all she can see
are the dreams all made solid
are the dreams all made real

all of the buildings, all of those cars
were once just a dream
in somebody's head

she pictures the broken glass, she pictures the steam
she pictures a soul
with no leak at the seam

let's take the boat out
wait until darkness
let's take the boat out
wait until darkness comes

nowhere in the corridors of pale green and grey
nowhere in the suburbs
in the cold light of day

there in the midst of it so alive and alone
words support like bone

dreaming of mercy street
wear your inside out
dreaming of mercy
in your daddy's arms again
dreaming of mercy street
swear they moved that sign
dreaming of mercy
in your daddy's arms

pulling out the papers from the drawers that slide smooth
tugging at the darkness, word upon word

confessing all the secret things in the warm velvet box
to the priest-he's the doctor
he can handle the shocks

dreaming of the tenderness-the tremble in the hips
of kissing Mary's lips

dreaming of mercy street
wear your insides out
dreaming of mercy
in your daddy's arms again
dreaming of mercy street
swear they moved that sign
looking for mercy
in your daddy's arms

mercy, mercy, looking for mercy
mercy, mercy, looking for mercy

Anne, with her father is out in the boat
riding the water
riding the waves on the sea


I spoke too soon.
Gods, I'm too tired to acknowledge the pain.
Fibrmyalgia is a bitch, but I refuse to be fibromyalgia's bitch.
I've been under an interesting amount of physical and neurological stress over the last month, not admitting to it, not recognizing it, not doing much about it -- now paying for it with a month-long fibro flare and two complex partial seizures, one that became a secondary generalized tonic clonic, one that sent my entire reality spinning and twisting down the rabbit hole.
But you know what? It's all good.
Tantric sex last night helped a great deal, pushing me into a very high state of consciousness, making me feel as connected as possible to what I percieve to be the universe and divinity and my own higher self. I came down from it calm, physically sedate, and tranquil as a lotus-eater. I opened myself up enough to see his aura completely (it's very bright and strong, like the sun). We need to do it more often. The fiery, passionate, pulse-pounding fuck of sex is fantastic, but it can hurt my central nervous system if it's too intense. Tantric is much better.
I'll make myself better. Slowly.


Driven up and down in circles
Skidding down a road of black ice
Staring in and out storm windows
Driven to a fool's paradise

It's my turn to drive
But it's my turn to drive

Driven to the margin of error
Driven to the edge of control
Driven to the margin of terror
Driven to the edge of a deep, dark hole

Driven day and night in circles
Spinning like a whirlwind of leaves
Stealing in and out back alleys
Driven to another den of thieves

But it's my turn to drive
But it's my turn to drive

Driven in -- Driven to the edge
Driven out -- On the thin end of the wedge
Driven off -- By things I've never seen
Driven on -- By the road to somewhere I've never been

But it's my turn to drive
But it's my turn to drive

The road unwinds towards me
What was there is gone
The road unwinds before me
And I go riding on

But it's my turn to drive
But it's my turn to drive

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