brightrosefox: (Default)
Okay, first thing:

Bad day bad day. Brain misfires, pain everywhere, spasticity, OCD episode, distractions, hypersensitivities, gut issues. I will say, however, that probiotics and omega-3 supplements of specific kinds are actually doing good things to my brain. It's not really evident in any of my outward behavior, but I can absolutely feel something going on.
Dear neuroweird science students: Is impulse control mainly frontal lobe? I have a Thinky Thing I'm thinking about, but I need medical professionals and medical students to confirm. I know of Things that can help me personally and specifically, but I need to make sure I'll be doing it properly. Also, this means staring slackjawed at my MRI photos and calling my neurologist.

***

Unrelated, copied from Facebook.

Well, this person said what I was thinking.
https://www.facebook.com/thautcast/posts/830987393625539?fref=nf&pnref=story
My personal need for disability labels is personal. My need to be able to relate to people via stories and fiction. So many people have told me things like how they "don't see disability" (sorry, I have to laugh at that) and don't see labels... and that's cool. Really. That's fine. But that is not how I see the world and that is not how I view myself. Being able to say, "Yeah, I'm disabled, and these are the medical issues I have" is indescribably relieving, even powerful; it gives me a power to choose and know my own self in a very intense way that I honestly can't describe.
My disabilities are not really eccentricities or special powers; they are painful and they will get worse as I age - and I'm talking about the comorbid, co-occuring, associated syndromes and symptoms. Eccentricity? Gift? Er. Yaaa...aay? I mean, sometimes my seizures cause wicked euphoric hallucinations when I close my eyes? That's... fun? And I suppose having severe anxiety and ADHD-PI and OCD and SPD could be my mind working out itself and it's environmental relationship?
So, um, so far I'm not seeing eccentric quirks and gifts. But I don't see myself the way someone who thinks that way would see me. I've met disabled people who say they aren't disabled, and a part of me marvels at the cognitive dissonance, a part of me wonders if they're completely rejecting the medical model of disability, a part of me wonders what they do when symptoms and syndromes kick them around and act truly disabling. I say nothing to them because I know it's their thing. The only time I'd want to try to sway them is if they want to spread their belief that disabilities are not disabilities, because that can become harmful and dangerous to the social model. As Stella Young said, no amount of smiling at a staircase will turn it into a ramp. So, as much as someone refuses the disability label, I really need them to consider it beyond their beliefs.

I'm just saying. We all have very different ways of talking about, discussing, portraying, coding, and having disabilities. I'm just glad that right now, I am able to very very openly discuss mine the way I want without being punished for it. And so should others, particularly those who think differently than I do. That's what makes discussion.

***

Also? I find it funny that so many people are like "OMG aliens, what if aliens come here, wouldn't it be amazing, we should learn alien languages, I bet they don't even communicate like we do, so we should be open to new communicative experiences!"
And then they're all like "WTF autistic people you're so weird we don't want you weirding us up we don't like you why can't you be normal like us!"
And I'm all, "*throws hands up* WHAT DO YOU WANT FROM US, YOU JERKS!"

***

I am having A LOT of thinky thoughts on why people reject the term disability in favor of eccentricity, quirk, gift. Not just abled folk but people with mental illness like bipolar or schizophrenia. I am still determined to wrap my mind around visibly physically disabled folk, like with cerebral palsy, who say they aren't disabled. It fascinates me because that view is so so alien to me. As long as the conversation is civil if course.

***

http://thebodyisnotanapology.com/magazine/just-try/
http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8

***

I don't do Twitter. But lots of my friends do. Fuck Autism Speaks. I'm not pushing anyone to do the #Notmssing thing. But I do believe it is vital to send Autism Speaks the crucial message that autism is not a "thieving disease to be eradicated" because IT IS OUR BRAINS. WE are autism. We are born with a different operating system that doesn't really comply with the standard. People laugh about meeting alien cultures with other ways of communication, and yet we are right here, a metaphor, and they not only turn away from us, they actively seek to erase us. So. No. Bad Autism Speaks. No. Stop it. Nobody is missing. We are right here. We are staring right at you, angry and sad. We have been here all along. We have been speaking out all along. You just haven't listened.

Also, hells no we're not ready to meet any alien cultures. Not if we keep trying to erase members of our own.



***
http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8
(Nick Walker is awesome)
Autism as a neurocognitive variance. Indeed. It's a disability because it hinders how we interact with life all the time. But there is nothing wrong with us. It's just a rewiring of our brains before birth or at birth.
Like, with me. I was born a fetus. I was a 26-week-old fetus when I was "officially born". My developing brain didn't have time to pick and choose. It just grabbed whatever it could, crammed stuff in, got a random shiny new operating system that was able to work around all the dead white matter, and figured it was good enough because I still needed to finish growing into being a baby, you know? Like, "Fuck it, we'll deal with this brain damage later, just keep the body going, okay? Move it move it move it avoid the gaps in the dead parts, come over this way, this construction project is gonna take a few more months than planned, so we don't have time for sick days, guys. What's that OS? It looks kind of tangled. That's fine, it's shiny, build it in, hook it up, whatever. Hey! I told you guys to avoid the dead zones! Awww daaamn, somebody get a new team over there please? No workman's comp here, this is preterm, okay? Just go go go..."
And that's where I got my brain.
So, dear allistic and neuro-typical assholes who question my right to exist, who insist that kids like me are missing, stolen, lost, forever silent: Fuck off. My brain worked hard to be itself, and just because my OS isn't yours doesn't make me lesser.
brightrosefox: (Default)
http://www.autisticsspeakingday.blogspot.com/2014/11/autistic-ways-of-reacting.html?m=1
My mother has always insisted that I be more self aware. I never figured out why that was so difficult. I'm learning so much. I feel like rediscovering myself.

" Low emotional self awareness means that i can be – often have – building up to full meltdown without even knowing it. On a really low self-awareness day, I can be crying or raging over something and not even know that I’m crying or raging, let alone why. Tears will be streaming out of my eyes, and I’ll insist I’m fine, it’s just my allergies. Not because I’m lying, but because my conscious brain is genuinely unaware of how upset I am."
brightrosefox: (Default)
Sometimes I forget that this is the place I can always come to when I need to vent.

There has been pain, pain, pain, fatigue, pain, and tests. I had a brain MRI because the neurologist wanted to have an updated picture of my brain. She wants to make sure that the issues I've been having are not necessarily seizures but severe hypertonic spasms. Next month, I will have a video imaging EEG for eight hours to see how often I have seizures.
None of this worries or bothers me. I almost don't care anymore.
I hurt. I'm exhausted. Whatever. This is life. Like... my mom keeps wondering what I can do to "make it better" and at this point I just spin the wheel of answers. Nothing makes chronic pain stuff "better" - it just lessens the symptoms.

So, anyway.

"In the best known version of the Greek myth, Persephone is dragged down into the underworld by Hades, whose title is 'Pluto.' But in earlier, pre-patriarchal tales, she descends there under her own power, actively seeking to graduate from her virginal naïveté by exploring the intriguing land of shadows. 'Pluto' is derived from the Greek word plutus, meaning 'wealth.' Psychologist James Hillman says this refers to the psyche-building riches available in Pluto's domain. Hades, he says, is the 'giver of nourishment to the soul.'" - Rob Brezsny

"I am channeling my matron goddess Persephone today. In the original myth, she chose to descend into the world of Hades in order to gain knowledge of the shadows. Hades had a power to nourish the soul, which patriarchal translations misinterpreted. There was no abduction. There was no assault. I always sensed something beyond the stories.
In my own Joanna way, I see Persephone as brightness and Hades as darkness. The lotus and the moon. Mage of light and mage of dark.
The story of Persephone and Hades is probably one of the most misunderstood, misrepresented, and mistaken relationships in mythology. I have never been so relieved to see my suspicions confirmed."

I am still obsessed over the original myth of Persephone and Hades - how she so willingly and deliberately descended into the shadows, how Hades in fact was nourishment for souls. I grew up knowing that Persephone was one of my goddesses but I didn't like the patriarchal story. How wonderful and relieving to know that there never was a kidnapping. The more I meditate on my connection with their relationship, the more I feel powerful, relieved, relaxed, and free. I may one day figure out enough lucid dreaming to really communicate with the part of the gods that resides in my Higher Brain and Subconscious mix. You know, the Quantum Psychic Consciousness.
Oh. I'm professoring again. Cough.
In conclusion, polytheism is awesome and if you can connect to the deities that call you, it can be enlightening.


So, anyway, all my medicines and treatments have been wonderful and ideal. Yay.
brightrosefox: (Default)



Okay, so the above post on my Facebook has been getting a lot of awesome replies, and I wanted to share it here so people could see what I mean. I'm gonna copy the post itself here. If people's comments show, please don't bug the people.

Here is what I wrote:

So, fellow adult autists: Can we talk about autism comorbid conditions? When explaining the more annoying aspects of having an autistic brainworld to health professionals, the genuinely curious, and people who want to learn more, I've started talking more about autism's comorbidity. Because I have talked so much at length about cerebral palsy's comorbid conditions - which, in fact, can intersect with autistic comorbidities.

Also I ask all this since cerebral palsy is the result of static brain damage; ie periventrucular leukomalacia, which is closely related to, even can be a type of neonatal hypoxic-ischaemic encephalopathy. Cerebral palsy is technically a result of static non-progressive collective brain injury. So cerebral palsy itself stays as static damage, while its many comorbidities march on progressively, causing widespread chronic pain, a sort of premature organ aging ahead of chronological aging, bone and joint debilitation, muscle atrophy, etc - generally beginning in the late twenties, peaking in the mid thirties, and slowly moving forward through our lives.
CP alone is ugly and worrisome, but most research is so focused on children that older adult patients tend to be ignored. It's only recently that adults with cerebral palsy, specifically spastic CP, have been studied. Our systems are... I don't know the right phrase. Degrading? Slipping? Damaging? Certainly debilitating and disabling. As we hit our thirties, many of us do get worse. There has been a giant amount of self-denial in the CP community. It brings up a rallying cry of "I'm strong! I can fight this disease!" except strength isn't the point, you can't fight, and it's not a disease. It's a disability, and it's personal to each individual.

See, I'm spastic and ataxic hemiplegic, but mild enough that I've gotten "But you don't look disabled!" all my life. Even when my left side goes through classic flexion, internal shoulder rotation, toe walking, all very obviously (you see, it doesn't stay like that all the time, hence the mildness. But when it doesn it's obvious enough to get "What's wrong with your arm? Why are you limping so much? Were you in an accident?" comments.
However, the chronic illnesses that developed in my youth that we all ignored because we figured "it was just from CP" have gotten so much worse in my now 35 years. I am in a lot of fibromyalgia communities, for example.

Now! Since autism's comorbid conditions include anxiety disorders, sensory processing disorders, neurological disorders like ADHD and OCD, mental illnesses, epilepsy and seizures, visual problems, spatial problems, depth perception problems, I want to cross-check them with cerebral palsy's comorbids, which include... all of those, plus pain, joint issues, nerve issues, muscle pains, skin conditions.

But fellow autists, please correct me if I am wrong on things. I need to figure out how many of my comorbids are specifically connected to autism so I can sort them all out, charting and making patterns and checking them against the comorbids from cerebral palsy. What are other autism comorbids?
Also, I don't like saying things like "autism symptoms" since this is how I am wired from birth. Like cerebral palsy. So I've been saying "comorbid condition symptoms". Does anyone else do this?
brightrosefox: (Default)
And... some days I wake up from ethereal dreams I barely remember having the intense sense of former pointed ears, former wings growing from my shoulders, and a former unicorn horn growing from my forehead. If I look in a mirror before the dream is fully shaken, my eyes still have a faceted crystal glow, white enough to show every color, ringed by blue-tinted midnight black, and my skin shines from beneath, light rippling across my hands, like reflections in rivers.
Sometimes in those moments I just don't feel human. And it makes me feel wonderful.
brightrosefox: (Default)
Because I'm always the fucked up, mentally bizarre, clumsy, twitchy screwy fool who never gets it right, and even when I try to make it better I do such a poor job it needs to be fixed again and again. Some people call it cute and endearing, some people call it stupid self absorbed insanity. I keep trying. I don't even know. I'm tired of people telling me what I should do just because they want me to. Advice and suggestions are awesome. Pushy preachy sanctimony is awful. And even if I don't do it the way people want me to, at least I'm doing it the best ways I know how.

My best beloved cat is ashes in a box because I waited too long; my floors are never clean enough; I watch the same television shows and movies and read the same books over and over for pure comfort and joy; my memory is disintegrating and the only reason I remember anything specific is because I cheat; I want my friends to be okay with each other; I want to talk about things that confuse and fascinate me which include my disabilities; I collect current My Little Pony toys; I just want people to realize that my autism has a name and they can use it without assuming I'm begging for attention, same thing with my aging cerebral palsy and fibromyalgia; I want people to stop insisting I do yoga and to stop insisting I quit eating wheat or dairy when I don't need to, I can't go vegan, I hate tofu and my body can't handle it, I can exercise all on my own;my drugs, supplements, and therapy sessions are working exactly as well as they should be and I twitch when any of them are attacked by people who don't understand; sometimes I actually do physically feel like an old woman and it is absolutely not ever because I am somehow conjuring it or desiring with magical thinking like in that book about law of attraction with pure belief, and if someone really thinks that kind of awful thing about me, then they seriously need to realize that I do not think like them and never will, and they cannot change that.
I am just me, and as I grow and change it will be me, myself, with bits and pieces of suggestions that I will keep and discard as I grow.

I have no fucking clue what made me write this out. Frustration, upset, irritation.
Feel free to pick it apart or ignore it. Just don't trash my medications or doctors, because in that aspect I am doing just fine. Just... this isn't even "vague posting" or "cryptic posting"... I just needed to release something. Social media like this may not be the best place, but by gods, I have so many people on my feed and friend list who understand and are in a similar place. This is for them.
brightrosefox: (Default)
I suppose I have 2014 resolutions already, so...
1. Ignore people who tell me that cutting out gluten will help fix most of my problems.
2. Ignore people who tell me that cutting out dairy will help fix most of my problems.
3. Ignore people who tell me that doing proper yoga will help fix most of my problems.
4. Ignore people who tell me that ingesting certain medicinal plants will treat, heal, or even cure most of my problems. I may take almost forty supplements and I advocate fully for supplemental medicine, but I am aware that not even the ones seen as miracle magic panaceas will do everything for everyone.
5. Politely remind people that being autistic is not a death sentence, that autism is not caused by vaccines, that having autism means seeing and communicating with reality in various beautiful ways, that I do not want or need a cure for autism, and that any "charity" seeking to cure autism is not one I will support.
6. Politely remind people that cerebral palsy cannot be cured, that it in fact is a static brain injury that usually results in comormid syndromes, associated disorders, and attached conditions like epilepsy, autism, joint pain, joint degeneration, bone issues, muscle pain, chronic pain, premature biological aging in certain aspects, and the eventual need for a mobility aid, be it a cane, crutch, or wheelchair.
7. Politely remind people that recently, fibromyalgia has gone from a "trash can diagnosis" to an actual, factual pathology, and that most doctors and specialists now understand and most importantly believe it is a real condition and not just an excuse to get the patient out of the office, that there are many symptoms, that sometimes what seems like fibromyalgia really isn't and vise versa, and that there actually are ways to diagnose it.
8. Politely remind people that I only just learned of my autism in the summer of 2013, and I am still discovering and figuring out all the little things that comes with it. Including special interests, otherwise known as narrow interests. If I seem obsessive about one thing or another, a friend can choose to politely ignore me, because I won't care that much. However, being belittled, scolded, yelled at, snapped at, and insulted for being a broken record about certain interests will not be tolerated and might result in removing such people from contact lists.
9. Try to not grind my teeth when someone tells me to "just think positive!" about my health issues, as I have subconsciously internalized the phrase "just think positive" with magical thinking and the concept of pure belief healing illnesses. Try to see the phrase "think positive" as literal once more, not a ridiculous catch phrase from spiritual self-help books.
10. Be happy. Even when not. Also, keep slaying syndrome monsters and such.
These are not resolutions anyway, because I don't make resolutions. I just write lists because my memory is falling apart.
brightrosefox: (Default)
"Sometimes the only way I know how to work through something is by writing..."
Hi.

"Now I know that the number one rule to being cool is to seem unfazed, to never admit that anything scares you or impresses you or excites you. Somebody once told me it's like walking through life like this. You protect yourself from all the unexpected miseries or hurt that might show up. But I try to walk through life like this. And yes, that means catching all of those miseries and hurt, but it also means that when beautiful, amazing things just fall out of the sky, I'm ready to catch them. "

I need this. I've spent my entire life catching all of those hurts, and sometimes those hurts are beautiful and amazing - because they live inside of me. Even the painful parts. Even the Monsters. I don't always declare war on the symptoms, I often imagine myself using psychological coping mechanisms, transporting my quiet self to a Zen garden with cats and sunlight and wildflowers, as the warrior parts of my brain battle those Pain Monsters with spears and war cries. It is a mind over matter dance that does not erode the symptoms, but helps me work with and deal with them. I apply creative writing to cope and to run to other worlds in my mind.

It is seen as Positive Thinking. But I tend to flinch at that term, because it is usually followed up with a sunshine up the ass platitude. I do apply a method of positive thinking to my conditions, disorders, and disabilities. But it is my own personal method, and whenever someone tries to insist that I use a different method, I naturally stand firm and stare them down. This is why I am happy that all of my doctors, specialists, and therapists are extremely willing to help me achieve my own positive thinking, because it is my own, and I know exactly what I want from it.
Unfortunately, it also makes me extremely vulnerable to criticism. I am probably Doing It Wrong. I am probably Wanting To Be Chronically Ill All The Time. I am probably Magically Convincing Myself That I Am Getting Worse. I Obviously Am Not Thinking Positively Enough - because my biggest coping mechanism is to write it down, and to share my newest findings with people I love and with people who understand my situation. At least, those are my assumptions. I made a few poor assumptions and lost a few acquaintances. But I moved on. Now, I am still writing, still speaking out. Now, I am determined to hold on to my personal method of positive thinking no matter who tries to change that method.

That is why I love this message from Sarah Kay. No one else can work inside my mind like I can. Each of us has the power to think positively in a way that works for us and us alone.

The next time somebody tells you that you need to stop doing it This way and start doing it That way, think long and hard about it before you even reply. Some things are just not worth debating. Sometimes all you can do is smile and nod and say "Thank you for the advice" - and move on. It is your mind, after all.

http://dotsub.com/view/e8f7d701-e410-464d-9051-eeae8a1ddd44/viewTranscript/eng

http://www.upworthy.com/watch-the-ted-talk-that-inspired-two-standing-ovations?g=2

I will probably listen to this video enough to memorize or recite most of it, and my poor memory will do its best to hold it close.
brightrosefox: (Default)
I randomly swam through my bedroom closet and found some house slippers and coats. I wish I had waited until my neck and skull muscles had relaxed and loosened enough, but oh well. Winter coats! I almost curled up in the closet for a nap. The thing about OCD (true and evil, not the icky "fake tee hee OCD") is that I know I am insane and that I need to help myself, but the compulsions just keep slamming me down. Which means I need to do this bit by bit. Minute by minute literally. Coat. Purse. Shoe. Matching shoe. Large black trash bag for charity. You know how it is. Even the panic moments. And then the ADD SHINY. I think the biggest bone of contention between me and my spouse is my extreme messiness. I admit it. But oh, that closet is comfy, and I essentially know where things are. After I flop like a child in a ball pit. Stimming! Oh my gods. It's stimming! What. I. Didn't even. Huh.
Should... should I... can I call myself autistic? Officially? Or should I keep calling myself borderline autistic? I don't knoooow. I don't care what people think, that's not the point. The word "hypochondriac" just makes me laugh and wave my hand in a Feh Motion.
Oh, the coats. The sweet comfortable winter coats. And hangers! I found hangers! I shall obsessively put the two things together all over the house, because I spaz ridiculously in winter and the Raynaud's Disease is sheer torture.
I am flapping and hopping from one foot to the other and making "Whee" sounds because I am organizing in a Joanna fashion. Oh my gods, I really am on the spectrum. How did I not know? This changes absolutely nothing on the outside. Inside my mind, though... Wonderland has opened a whole new portal.
So, an autistic friend asked me, "Does the word Autistic feel right? Cuz I sure as shit am not going to tell someone they 'aren't autistic enough' to ID as Autistic. And it's a culture, not just a dx. And I could have written this. Especially the compulsive going through the closet god I have no business doing this my body is saying HA HA FUCK YOU thing."
And I replied, cautiously, "...yeah, the word Autistic feels right. Yeah. And the culture thing also feels right. I think the only reason I've been hesitating is because everyone who knows me knows I already have so many medical issues that this is just one more issue to put on my doctor list - and some people might accuse me of "collecting medical conditions like stamps" to which I take annoyed offense. Not my fault my brain is screwy. I have Things in my brain. It is important to know what All The Things are. I've given up on the closet so far. Like, truly, NOPE. But it is still there, waiting to love me. So yeah."

Yeah, I'm happy. I've had some friends from CP groups, epilepsy groups, autism groups, and fibromyalgia groups inform me that my consistent posting about what I go through is helping them learn more and more about themselves. It turns out that I am becoming a role model. People are thrilled to see that I am so open, honest, willing to reach out and connect and share what I know.

-"You make me feel better when I worry about what is happening to me."
-"I love talking with you because you don't care about all the horrible stuff, you just want to know who I am."
-"Thank you for accepting me and talking to me. You're one of the few online people I feel like I can chat with and not feel rejected."
-"I'm so amazed and impressed by you. You are devastatingly intelligent and beautiful, you never let your disabilities completely overwhelm you, and you are able to reach out and ask for help when things get rough. You inspire me to be a better person."
-"You are so genuine and open. You really want to help people. You don't want to play a character on the internet. You're so refreshing and generous."
-"You have this strength that I've never seen. You can be in insane amounts of pain that would bring any man to his knees and you smile and raise your head and you keep going. You never lie - you say how you feel but you also temper all that pain and hell with beautiful, positive things."
-"You're one of my favorite disability advocates. You're like an idol. You don't hold back. You have almost two dozen medical conditions, and you are happy to talk about them, and you also know when to tone it down. You don't give a fuck when someone is angry at you. I want to do the same thing. Keep being you."
-"I love your power. I love your voice. I love your entire mind. I love how you approach every new medical issue with grace and understanding. I love that you can joke and laugh even when you are sobbing and struggling through the worst of depression and panic. I love that you refuse to project false positivity that you don't let true negativity destroy you. You shine like a beacon in the night. You, as a spiritual being, are extraordinary. You, as a disabled human, are beyond extraordinary."

And here is the funny thing: I do not believe in myself. I do not feel beautiful or inspirational or intelligent or confident. I KNOW all of this. I am very rational. I know, intellectually, that all these things are true. But emotionally, I am shy and scared and worried and upset and not at all confident, and I don't like myself enough to believe. I don't fish for compliments, because on an emotional level I don't want to cry, "Tell me I'm pretty! Tell me I'm awesome!" I know I'm pretty, and I know I'm awesome. But feeling it and believing it is another level of comprehension. You know? You know.
brightrosefox: (Default)
Oh, hey, my long lost theme song.

http://www.youtube.com/embed/Wmd60Kk9Ljk

Gracefully she's circling higher
She has the wind beneath her wings
And looks down on us, she said

Robbed of my innocence
Had no more time to play
I sure got my feathers burned
But I'm stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Eternity is set in her eyes
Throwing sparks back at the world
That'll never die and I think

She was robbed of her innocence
Had no more time to play
She's only a little girl
But she's stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Here she comes, I've been waiting
For my little phoenix

You've got to get close to the flame
To see what it's made of
You've got to get close to the flame
To see what you are made of

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

***

This reminds me, fascinatingly, of chronic pain, invisible illness, mental illness, disability, and the struggles of marginalization for a bodymind that is full of monsters.

http://www.youtube.com/embed/yxPMc-XWOZ8

Phantom voices with no words to follow
At the mercy of the cold and hollow
I withdrew into my sanctuary of silence
My defense

In this moment I am just becoming
Liberated from my cell of nothing
No sensation there was only breathing
Overcome oblivion

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

Waves of melodies once forgotten
Like a symphony across the ocean
Never knew that they could hear my calling
Deep within
Crashing in
Rushing in
Like falling

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

There is no returning to that emptiness,
Loneliness
The dream that lives inside of me
Won't fade away, it's wide awake

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

***

And this one, same thing:

http://www.youtube.com/watch?v=vdG3ECUC-mE

Whenever I wake up
I'm lost and always afraid
It's never the same place
I close my eyes to escape
The walls around me

And I drift away
Inside the silence
Overtakes the Pain
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

Whenever I wake up
The shards of us cut within
Always the same day
Frozen all in the fringe
I surrender to the sleep
And leave the hurt behind me
There's no death to fear
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

So far or right beside me
So close but they can't find me
Slowly, time forgets me
I'm lonely, only dreaming

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

***

And for my new friends in disability and invisible illness, I present my number one theme song.

http://www.youtube.com/watch?v=SJnCHctOeJg

Smash glass against the wall
Curse the music on the radio that the neighbours play.
Door slams, she turns her head
Watches through the window as he pulls away
Funny how your racing brain drives you so mad
When all the while you feel so numb
Too old to be clean far too young to be broken
Like an army we come

Cut back, left behind
I watched you self-destructing oh so many times
Shot down, once again
Sitting in a chair crying what am I going to do with my life?
Just learn to hide the way that you really feel
Never let them know that you're scared
But understand that you're not the special only one
Watch us now, watch us real close

How we all dance with this fire 'cause it's all that we know
And as the spotlight turns toward us, we all try our best to show
We are lost we are freaks, we are crippled, we are weak
We are the heirs, we are the true heirs, to all the world

Let's go build a fire down on the empty beach when the waves are crashing high
White heat purify, as the sparks fly up into the great black sky
Sacrifice these crutches to the crackling flames
Stand as silhouettes against the dawn
It's far too late to try to sleep now, seems I'm never tired any more

I want to dance with this fire 'cause it's all that I know
We are lost we are freaks
And we try our best to show
I am lost
I'm a freak ha ha.

***

Depression Monster is still wrapped around me, steel claws and silver grin, but I am fighting and fighting, and I have many spears.

Husband returned from New Orleans around one-thirty this morning. Rose and Jupiter immediately climbed on him and we all fell asleep in a snuggling pile.
Later today, errands! Petco Unleashed with coupons for Blue food and litter. Trader Joe's for cookies, whole milk yogurt, chocolate hemp powder, trail mix, pumpkin cereal bars, fairytale pumpkins. Dollar Store for calendars. H-Mart for produce and foods from outside North America.
Had a lovely chat near the with from a guy who was from Jamaica, who extolled the virtues of awesome iron-rich burro bananas and said that his grandmother, who ate them every day on The Island, was 130. She probably did lots of things. The man himself looked barely 40 but he could have been 50. I asked him which bunches of burro bananas looked best. Yay, snacks.
And we got a pure honey nut spread, roasted seaweed snack packs, tamarind paste, demerara sugar (4 lbs for under 5 bucks), black plums, pomegranates, red leaf lettuce, and stuff I forget now.
I have taken more medication to ease this pain, I have meditated with cartoon comedy to beat back the Depression Monster, and I now will get back to writing.
brightrosefox: (Default)
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.
brightrosefox: (Default)
I stretched the hell out of my back and legs and arms. It was lovely. I did it my way. I am very pleased and very satisfied. I won't discuss the various burning barbed wire pains that are distracting me even through the codeine, but I will talk about the beautiful meditative exercises I've been working with. Peaceful, serene, tranquil, calm, relaxing, refreshing, fantastic in multiple ways. The scene always changes, but always appears Zen in some way.
I had mentioned that my human coping mechanisms, my spirit guardians, had begun communicating with each other deep in my brain without my conscious knowledge, which leads me to believe that parts of my brain are starting to come together as part of the story, as my unlimited imagination and writerbrain is starting working on a whole new, amazingly unique, private story all on its own. No wonder I have been working on Amber's story beyond these bits of my brain. Amber has also given me free reign to write her as a fully developed character and not just a created coping mechanism.
In general, I am just... very happy.
And the funny thing is that I am in a depressive episode. I have all the symptoms, and I am quite conscious and aware. But I have things that are helping distract me: Talking about my imagination and my creativity, talking about the triggers for my panic attacks and my simple seizures, talking about comedy TV shows and powerful fiction books. Somehow it all is able to keep the major depression away, although it is a very intense fight. Sometimes I find myself weak and struggling, even physically, as thoughts of worthlessness and hopelessness, frustration and terror, pessimism and guilt all slam into me and my wall and my shell.
I suppose I could say I am happy. I feel happy.
But... what is happiness?
"Happiness is a mental or emotional state of well-being characterized by positive or pleasant emotions ranging from contentment to intense joy." Sure, I feel those things. However, there is a strong undercurrent of the exact opposite.
Brains, man. Brains are wild. Brains are weird. Brains are so complex. One day, I want to have an MRI and see exactly what my brain is doing. I want to sit with multiple brain specialists for hours on end, and just... talk. I want to talk about my brain.
Brains, man.
brightrosefox: (Default)
Quote of the day so far:
"Oh, that's okay. Sometimes my very existence amuses, confuses, or utterly angers people for various reasons. Myself included. I am so fucked up and insane and crazyweird that I unintentionally upset someone or entertain someone every time I do anything. Why am I here? Who am I, really? Hell if I know. I forgot why a long time ago. But it is a good life, full of fascinating people, and I'm happy to stay for as long as it will have me."

Sometimes I just want to be Honey Badger eating pistachios. But I have too many emotions and too many reactions. Damn my screaming amygdala.

My mother says it is impossible for me to not be overly emotional to everything. Even, like, air.

I think that's why I like online socialization so much. I can have my emotions and my reactions and my masks and shells, and everyone I socialize with can have theirs. I struggle with physical interactions so much and I wind up draining my reserves. You know what I mean!
But!! My shells are cracking all on their own because I'm getting more confident. I've been collecting broken beautiful shells left and right. How about you??
We are so beautifully screwed up but we are together and I adore all of you.
Also, cracking shells have started becoming a new symbol for me. I'm covered in layers of shells of different colors and intensities. Gently breaking each one feels reliving.

***

I have no idea why, but right now I am so happy, joyful, blissful, content, and serene that bluebirds should be frolicking around my head. I just feel totally zen.

I am happy about my writing, my book reading, cleaning my house, brushing each cat for ten minutes, taking long walks, meeting random people and having small talk, being on the internet, not being on the internet, being by myself, cleaning my house again, being disabled forever, knowing all my limits and raising those limits and pushing forward when I can and pulling back when I can't, having several canes to walk with, taking medications that work, sharing my stories with people, loving myself because of all these wild flaws and faults.

Even being personally insulted on geek forums because I'm not wild about the fandoms. That makes me happy. Because it makes me laugh. People are adorable!

Just... happiness. Pure. Simple. I can't even explain or understand it. It permeates me. Like a Lotus Sutra. Like a Buddhist chant. Nam-myoho-renge-kyo.
I don't think I could feel anything but happy right now. Even when it fades later, and it will, I shall remember.

Somewhere, Honey Badger is smiling.
brightrosefox: (Default)
Aww, I remember writing this last year and people being very amused.
***
Bright eyed, bushy haired, bright colors, babbling due to painkillers and happy muscle relaxants and healing gemstones and all that weird pseudoscience silliness that I believe in despite my atheist agnostic upbringing.
I've been pagan since I was a teenager, so hah. Polyagnostic polytheist pantheist eclectic witch who will believe even if proven completely wrong. Even when my parents insists that it's just my brain and that psychic powers don't exist, I will agree because that is true, too. There are so many truths out there. I love quantum everything.
See, I follow the Discworld concept: Even if a deity manifests in front of be and insists it is a great god, I will tell it "That's nice. Just because you exist doesn't mean I believe in you. I believe in my Higher Brain smushed with my Subconscious, which you possibly came from. But since you are here, let's party anyway. Red wine?"
I firmly believe that Man created God, and the Universe created both Man and God, and all gods everywhere sprang fully formed from Man's brain because Man's brain is more complex and extreme than we can ever conceive. The universe is bigger than everything.
And I have also always believed in All The Gods, so whenever someone asks me if I believe in God, I always ask "Which one?" which leads to confusion and people thinking I'm, like, evil or something and must be saved or whatever that means. *shrug* I don't care. I like what I like and I don't want to push it on anyone because my faith is mine and your faith is yours.
I just ask that you please please do not attempt to convert me to Christianity because nope nope nope. I am half Jewish, I know that Christianity is a Jewish heresay, I know Yeshua was just a man who explored various believes including paganism and then returned to talk about it, and that he wasn't part god, he was just a very good orator. So, no. I am who I am and if you leave me alone I will not roll my eyes and facepalm at you. I love you all, I always will... but I can love everyone without being bothered by proselytizing. Love is love is love is love. There is no wrong or right, there is only love.
***
brightrosefox: (Default)
Especially for [livejournal.com profile] naamah_darling

Here is a post for questions about my Healthy Multiplicity, and the three (now potentially four) female people/entities who inhabit my brain and help me cope with all my various vast disabilities and illnesses.
This is also a post for others to discuss their own.

-Serena: The first known guide, who guides me through all and every pain, tension, emotion, and fear, who is my inner nurse.
-Alicia: The second known guide, who guides me through epilepsy and postictal states, who is my inner mage.
-Amara: The mysterious third guide with me from birth, only recently human, who guides me through overall brain damages, memory problems, cracks in the walls, neuronal crumbling.
-Amber: the previously silent, hidden fourth guide who acts as a preserver of my sanity, who seems to catch me when I fall so deeply I fear entrapment, who deflects darker energies and turns negative into positive.

Disclaimer: This is not a case of DID, which is a very, very specific disorder. My girls do not leave my mind to use my body and voice, although there have been very rare postictal states in which Serena has spoken through me when I was fully incapacitated; however, I was still myself, just unable to articulate until she lent her voice.
Healthy Multiplicity is extremely common in perfectly healthy people. It is often seen as a form of coping mechanism for many disabled people, who need to sometimes retreat into their creative minds to preserve themselves, to soothe their mental conditions, to know that they are able and capable and strong. Because sometimes, being reassured by loved ones falls hollow, and you know your own mind well enough, and your own mind knows you well enough.
brightrosefox: (Default)
"That which does not kill us leaves us with scars." -Failure To Fire webcomic

As of 11:58 PM April 6, I will have survived for thirty-four years with all my scars still around. I am constantly asked why I don't have the scars smoothed over or rubbed out. And I have finally realized that I don't want to. They are here for a reason. They are not going anywhere. They cannot go anywhere.

Also, if I try to rub out the keloids, I suffer blisters that look like third degree burns. That is what happens to tender newborn prematurely born technically still fetus skin where veins and blood vessels and lungs and brain matter and organs collapse and struggle even in life-saving incubators. All that tape to hold in all those IV needles. Scars all over my abdomen, arms, hands, legs, skull, tiny bits of flesh missing and regrown in textures that look like prokaryote cells - scars that look like tiny nibbles from tiny sharp teeth. Skin that stretches and alters as the body grows, scars that grow with body growth in fascinating ways.
Three months early birth, three months stay in hospital, one pound thirteen ounces, mild periventricular leukomalacia, mild cerebral palsy ... I earned those fucking scars. The only one I might want smoothed out is the one on the side of my right breast, where that tube was inserted to inflate my lung. Sometimes it makes it hard to wear a bra properly since the keloid pulls the breast tissue flat and crooked. But the ankle keloids will stay. They hurt constantly. They are highly sensitive. They bleed extremely. But they remind me. I did not die.
brightrosefox: (Default)
It starts with Saturday, Imbolc 2013.
See, on Facebook, I ran into the girlfriend of a guy I had been friends with for years but had never honestly had one on one time with. Which is the story of my life, actually: Having all these friends and these acquaintances, and having memories of only parties, large gatherings, where if I wanted to talk with someone alone I had to almost push my way through and schedule a place.
Ben had always been The Dude. He abides. He has always abided. He is friends with so many people. It is understandable. His girlfriend, Jess... I didn't know her. We seemed to have many things in common. After months and months, I finally reached out to message her. And we began talking. And something started happening.
I said, "We really really need to get together. Just us. No parties, no house gatherings. Adam may or may not be home. But no matter what, I want you meet you, in my house." And she agreed, and we made arrangements for Imbolc weekend. Adam was indeed going to be home, so he and I set up for brunch and awaited the arrival of Ben and Jess.
They arrived, and I hugged Jess like an old, lost friend, and looking at her there was this instant knowing, this instant understanding and energy of "Yes, I know you. It has been so many lifetimes. I missed you." I hugged Ben the same way, but with a little less intensity, as I already knew him.
After a magnificent brunch, I gave Jess a tour of the upstairs and showed her my gemstones, and we talked about our spiritualities, our energies... how I am a beacon and she is a generator. And yes, the energy that came from her made my head buzz pleasantly. I realized that several items I'd been keeping hidden had been meant for her, and she was extremely grateful. I had randomly thrown wood brushes, lip balms, skin creams, gemstones, and makeup into a black canvas shoulder bag; I gave her all of it. It turned out that it was all exactly what she needed, even the bag. It had all been intuition and connection. I had known her already. And we talked about knowing people, about how she and Ben had known immediately that they were for each other. We talked about energy, about metaphysics and quantum physics. We talked about getting together again, since they live very close to our neighborhood.
When they left, and the energy was still rushing around the house and my head, I sat and considered. I believe I tend to be a little forceful and intense when establishing a friendship with a person I deeply like. I wanted badly to grab Jess' hands and tell her how deeply I knew her, how intensely we connected. But she knew. It was in her face. She always made eye contact when we talked and she always smiled at me. She glowed.
Later, I messaged her, asking if I did okay, if I wasn't too extreme, if I didn't put my feet in my mouth too much. No, she said, she and Ben had genuinely and honestly had fun and wanted to see me again. And that relaxed me more than I could have realized.

Making friends is so, so, so difficult, because I need to communicate on specific levels before I can actually approach them. Fascinatingly enough, Facebook and Livejournal are among the best things that have happened to me regarding this kind of communication. I need to type out words, ritualistically, deliberately, allowed to pause and stumble and correct. I need to assure myself that there can be a connection when we meet. My family cannot understand, and I know why, and I get that. But I am unable to simply walk up to someone and start a comfortable conversation without feeling an absolute terror of possible rejection so deep that I can hardly speak.

I love fiercely, I love deeply, I love powerfully, I love in ways that seem insistent. I need friends who can do that with me. And yet I will always, always wonder if I am making mistakes, if I am coming off as "too crazy, too weird, too dumb, too whiny, too clingy, too repulsive." I have learned that in the past, people have questioned my relationship with my husband, wondering how he could "put up" with me, if I was truly the right partner for him, if he could even handle me on a constant, consistent basis. I have taught myself to let those comments go, because nobody has any say about my relationship but my partner and myself. However, it really is fascinating and very interesting that people who should know me would assume that I am not good enough to be loved by someone who has so many different ways of living than I do.

Loving me is a hard thing, a wild thing, a weird thing, a deliberate thing, a test of strength and resolve. I am intense and extreme and stubborn and wistful and insane and I am too much inside my own head and quite often not fully aware of my environment. To love me is to live a journey through many worlds. I just want friends who can do that for me. I don't even care if they would badmouth me. These days I have stopped caring about many things.

The heart-breaking problem with online friendships is that meeting in person is usually improbable, or highly difficult. But if I were able, if I had all the money and opportunity, I would find a way too meet all the friends I have made online who I knew could love me the way I needed.

Right now, all I know is that I must see Jess, and Ben, soon. Maybe it will help bring me out of this quantum shell I have constructed around my heart.
brightrosefox: (Default)
Okay.
Okay.
I'm... oh, hell, what is just under "okay" but not near "bad" or "poor"? Medication and meditation have both helped immensely. Cuddling with spouse and cats has helped immensely. I was laughing. Except there was still that Dark Nope in my mind, flattening me and reminding me that darkness was everywhere in my brain right now. There is absolutely no point in pasting on a smile and ignoring the depression, because fuck it, there it is, and it will end when the episode ends. See? Clinical major depression is an entity, and it will leave when it is ready. It can be coerced, cajoled, enticed, forced and tortured. But sparkly thoughts are not a treatment. I have not and do not live any part of my life by the so-called "The Secret" book suggestions. Nice idea though.
I have been envisioning things that relax me, entertain me, and amuse me, of course.
Best to take my pills with something decent in my stomach - milk in coffee, juice, yogurt. Followed by a full meal. I just have no feeling for an appetite. It's not a rejection of food, it's just a lack of feeling hungry. I ate half a burger with sliced cheese and yuk choy vegetable dip, washed down with thick acai pomegranate juice. It was plenty.
I just feel empty, dark, slow, neutral. That is it. Neutral. Shrug. Whatever. Okay. I don't mind. "I have no strong feelings one way or the other." (Hah! I knew I'd find a way to quote that line soon.) I don't really want to go anywhere particularly to anyone else's houses and couches. If I were to move, it would to go walking, shopping, moving for exercises. I'm just a cat. If someone wants to hang out with me, they had better enjoy sitting on a couch, reading books and watching TV and browsing online. With the occasional discussion about physics and neuroscience and maybe fandoms.
See, here's the tricky part: Depression is a great pretender. It can put on a perfect mask. It can smile, laugh, and interact with the best of them. That is what viruses do. It can move me, control me, make me do whatever it needs me to do while it quietly spreads across all my nervous system and tweaks each little neuron so that gradually it overcomes its host and becomes a best friend. Creepy, isn't it?
But I will know. I have been learning. That is part of my library magic, my moonlight magic. I am just as sneaky. I have weapons. I can sneak into the main consoles and screw with the auxiliary systems before I even start working on tampering the primary systems. Sometimes I get caught and I get locked up and I even get tortured. But usually it is worth it.
In conclusion... I will be okay. For now, I am that thing just below "okay" which is nebulous.
Nebulas are pretty.
I've been watching too much Star Trek. I don't even care.
brightrosefox: (Default)
Yeah, I think I'm starting to slip into a depressive episode.
I just want to stop reacting whenever anyone insults me in any way.
I feel like crying over... I don't know, nothing and everything.
That is why watching Futurama and My Little Pony Friendship Is Magic is comforting, so shut up.
I want people to stop telling me how to be or not be physically and mentally disabled, bisexual, ethically Jewish, eclectic pagan, psychically sensitive, a female, very short, curvy slender, balanced between holistic and pharmaceutical medicines, a writer, a reader, an intellectual, a human.
I want to remind myself how to ignore those people and live my life my own way no matter who says what. I want to stop reacting and overreacting. I want to remind myself to just shut up and walk away with the knowledge that they will not learn nor understand, but others will.
I want to learn how to actually make and keep more friends on my own without wanting to run away.
I want to squeeze all my toys and dolls and meditate and cry cleansing tears.
I just want to be.

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