brightrosefox: (Default)
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )
brightrosefox: (Default)
Yes, obviously. Sheesh.

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
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.
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.



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.

(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.
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'Reborn' by Laura Sava (
'Mirabella' by Rachel Anderson (‎)

Two forms of my own story character, Asha Clara Night, my strongest, most individual, most personal fiction character.

These paintings. Completely different images that look almost exactly like incarnations of the same character of my own subconscious creation Women who look almost exactly like the dreamself I am becoming in my dreams and visions.


Rachel Anderson Mirabella

She was in my dreams last night and many nights before. I haven't decided exactly who she is yet, but in my dreams her name is Asha, meaning "desire, hope, hopeful; life; alive; she who lives." Which says so much, so so much.

She is another dreamself, not a spirit guardian, but much closer to my Self than my other characters (Alicia, Serena, Ananta: my spirit guardian coping mechanisms for epilepsy, memory loss, insomnia, sleep problems, [Alicia], chronic pain and fatigue, depression, anxiety, physical disabilities [Serena], neurology, neurodivergence, autism, total mind-body connection [Ananta].

Asha seems to represent many internal things about my emotions, my heart and mind, my rhyme and reason, my logic, my science, my creativeness and creativity, my power, my energy, my beauty. If she were to reveal herself as a guardian, she would be for emotional states, creative thoughts, desires, loves, patterns, ideas.
Asha is definitely powerful in a way I always wanted to be since childhood: Fae and and Elemental Mage and Neurodivergent and Autistic Witch and Quantum Magic Scientist and Story Crafter and Shape Shifter and Magic Librarian and Magic Keeper.

Asha seems to represent my deep, obsessive, compulsive wish and desire to be one of the psionic-mage superhumans in my stories, to take over for be when I feel failure and self-loathing and terror and panic. I think Asha may in fact be an actual entity, one who communicates outside instead of simply speaking into my visions, dreams, pain flare withdrawings, anxiety attacks.

All I know is that Asha was in every dream last night and throughout the past several sleeps, long detailed intense dreams, and she quoted Kosh. She spoke in a soprano version of my voice that could sing. She was always here She is always here. She has always been here.
I think she was with me since I was a baby. In different forms, in different species, with different names, in different imaginary beings, in different fictional characters. She was made of fire. She used to be a phoenix, a unicorn, a dragon, a star, a nebula. I know Asha. I know Asha in the way I hope to know myself.

The thing is, Asha has a fully active voice when I am completely conscious, aware, awake, functional, and stable. She didn't completely create herself, but she grew and evolved over my lifetime in her own way as a character in my subconscious. She took ideas I worked with and wove them into her personality, behavior, and mentality. My disabilities are hers. She stayed and changed and grew with me like a permanent piece of my spirit. Asha also represents my fluid sexuality - I often visit her in the place she calls home and we make love, representing my desires for love and orientation.

She lives with Alicia in the Wonderland cottage, but she freely moves about my brain more often. She shapeshifts into elemental energies, she moves around my hippocampus and amygdala and temporal lobes and cingulate gyrus and thalamus and auditory cortex and somatosensory cortex and parital lobe and the back of my brain.
She has altered the Wonderland cottage to be something else entirely, with three bedrooms, two bathrooms, two office rooms, a large entertainment living room, a large kitchen, a basement. The outside build would contain concrete, cement, hemp and limestone, bamboo, steel. The glass windows are shatterproof. The doors are hemp-lime and timber. That must say something about my mind's inner workings. Especially since the main reason for hemp being illegal is due to its threat to corporate patentable synthetic fibers and wood and paper product industries, while the medicinal drug potential became subject to false claims and fear mongering alarm campaigns until the original industrial potential became buried under the alarmist anti drug campaigns. Part of me probably knows how powerful this is. Medicine from nature itself and the human brain itself is usually denied and seen as worthless.

Asha represents that part of me that firmly supports the controversial balance of traditional pharmaceutical medicine and nontraditional botanical medicine.
Asha is my activism and advocacy. Asha is the fire that moves my belief in the combination of synthetic drugs and organic drugs. Asha is the phoenix in me that rises after every defeat, every failure, every attack, every oppression, every attack and assault on my truths and faiths.

Throughout many names, faces, back stories, lives, personalities, and individual growths... she has always been Asha Clara Night. And this is how she asked me to look so I could see that there is beauty deep and shining.

I must find and thank the artists for these images, since I found myself taking these pieces of artwork and subconsciously turning them into incarnations of my own fictional character.

Asha may well be the character in that second novel after all. It won't be this Asha, my Asha; just a version, a more humanized incarnation I can bring out to show the public. This excites me. She could help me write it, just by living in my mind.
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"Sometimes the only way I know how to work through something is by writing..."

"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.

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.
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You know it is a bad day when...

A Cerebral Palsy induced fall against carpeted stairs leads to a Complex Partial Seizure which leads to a Panic Attack with wild animal sobbing so intense your partner comes up and worries to death over you and carefully leads you to a couch and gives you water and holds you.

"It's just stairs," you tell yourself over and over. "You can maneuver them. It's just stairs." And at the top, exhausted by victory, you lay on the floor, weak as a new kitten, heart and head pounding to near bursting, crying until it sounds like laughing. And maybe all you can do in that horrific posictal state is laugh. On the inside. Because Epilepsy is a monster and has no qualms about gaining allies.
Now it is time for Fibromyalgia to have its turn. Burn body burn.

I am so tired. I have no more synonyms for exhausted, fatigued, beaten, weakened. I am done.
But I will never stop. If I cannot be myself I will be a dragon.

For those who know my Healthy Multiplicity: indeed, Alicia and Amara were like drill sergeants in my mind. They were the only things that kept me climbing those mountainous stairs. I love my human coping mechanisms.
Typing doesn't make me tired ever. And this must be written.

So... *cough*
I am okay. But I am not okay at all. So many painful things are inside my brain and my body.
It is okay to talk about that, right? To be not okay? To try to pretend to be okay?
See, that is why I love online friendships. Because if I cannot speak without bursting into stuttering wild sobbing, I can type slowly and people will understand. Right? Oh, my everything hurts.
I could say I have a muscle pain, or a joint pain, or a migraine... but I have everything pain everywhere. And I don't know how to explain it without it coming across as "My pain is worse than yours!" and I don't want to do that. Because all pain is horrible. My pain is no worse than yours. Pain is pain is pain.
I don't know what to say. My brain is so everywhere. I feel so split open and raw and drifting. I think some of the things keeping me together are my fictional characters, who still demand their stories.
I want to sob and scream and howl until I am so raw that I cannot speak. Is that okay? I can do that, right? Nobody will bitch at me for complaining, right? I just don't know. I don't know what to do. I don't know how to feel. Fear is something that feels flat but understandable. Like am emotion I am aware of but unable to truly experience in a deep true way. Like crying. It is a thing that is happening. I just feel confused. Why do I feel?
You know?

Oh, yes. The seizure. Oh, Alicia. She appeared to me so quickly, so fiercely, I had no choice but to grab her outstretched hand and run with her. She yelled, "Come with me now! You need to get through the looking glass! There is no time! Amara is waiting! Serena is waiting! Go, go, go!" and she almost shoved me through the portal, and all I remember is Amara catching me in her arms... Amara with her truly calico hair and her stormy eyes of deep purple and darkest blue and pure gold, her short slim muscled hourglass body that held me in an iron grip, my mouth against her olive-colored neck, and our tumble to a cavern floor that was lit with sunlight and moonlight, so I could see her properly, how she was only a few inches taller than me, her mouth pouty and full, her oval face the dream of every American woman in a plastic surgeon's office, her straight teeth bared in strain. She got to her feet gracefully and looked down at me and said in the voice of temple bells, "Rest now. Serena will be here soon. I've never fully introduced myself, but that can wait. We have so much time."
I shook my head. "Alicia said there was no time--"
Amara smiled and entranced me. "Only in her dimension. Here, there is every time. I am everlasting, after all. I love and guard your entire mind and brain, remember? I work with my sister, Amber, who encases everything in your varied forms of spirit and soul and energy and power. Alicia and Serena are limited. Amber and I are unlimited. We shall be with you until the end of everything. You hurt badly. I sense it. Serena will be here in a moment. I will stay with you."
I stared at her. "I've never known you until now. I love you."
"Yes. You were meant to. I am the culmination of your neurology, your neurochemistry, your biochemistry, the stuff in your head that help make you the things that are you. A Self. A Mind. A Brain. I change as you need to change. I will always be here."
Amara my immortal began to slowly fade, and Serena came running. She gathered me in her arms and murmured soothing words, and suddenly I felt as calm and as safe as I ever could.
And then I awoke, and I was a person climbing the stairs.
And I climbed the stairs, sobbing and forcing myself, and at the top of the stairs I lay crying, and then my husband found me and helped me to my work couch and gave me water, and I couldn't talk about my girls, but it was all right. I would be all right.
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)
You guys, I amaze myself. I've been writing helter skelter all over the place: Novel, stories, novellas, blogs, facebook, notebooks with various pens, everywhere... in the middle of a postictal migraine and insanely horrific agonizing chronic pain flare-up following recovery from a panic attack. If I didn't have a computer or paper I might write on the walls. I hurt so badly I have no idea what I'm doing. I feel half fire and half water. Wild and raging, and all I want is a crackling bonfire and a rushing river.
I doctored up a photo of myself and it came out half gold light and half blue light. It looks inhuman. But part of me adores it so much. My face is two different parts. I am two entities in one. When I burn, I am cool. When I am cool, I burn. It is ying yang, dragon phoenix, up and down, left and right, I don't even know. I don't speak out loud except to my cats, I just speak through Story. So much Story inside me.
That rock. That rock that my husband gave me, the rock that he held while standing in Room 217 of the Stanley Hotel, in which Stephen King wrote "The Stand" and used as an inspiration for "The Shining". That rock is still next to my laptop. I am covered in words. I am filled up with Words. I may disappear into Story. I may not even see the world until I have to.
Is this what it is like to live in the land of the Fae and then come back to the land of humans?


Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.
brightrosefox: (Default)
Brains, man. Brains are weird.
Early this morning I woke in smack in the middle of another panic attack. Crying like a cornered wounded panther kitten and everything. No reason at all. But then I realized that whatever wanted to eat me couldn't fit through the little cave I was huddled in. So I did that breathing exercise that Beca taught me: breathe in golden light, all through the spine up through the crown, breathe out silver light from the spine, don't stop breathing.
And then of course came the complex partial seizure. Because brains, man.
But! I had some crazyweird fantastic "visions" while in the seizure. Alicia's Wonderland dimension in my mind is becoming really elaborate.
She mentioned talking to Amara, and when I came out of the seizure all I could think was "Wait, what? But my brain guardians don't talk to each other like that. I mean, okay, Amara handles every neurological and psychiatric fuckedness outside of epilepsy, but still. Amara doesn't talk to Alicia. Not even Serena talks to Alicia. Alicia doesn't go outside of the Wonderland gateway. Why are they talking to each other?"
Brains, man. I swear. I think this is some sort of representation of my whole brain trying to come together and work out solutions. All my private human-faced coping mechanisms (Alicia, seizures; Serena, pain and fatigue; Amara, neurology and psychology; Amber, systemwide maintenance) finally mechanizing cope as a giant bodywide thing, maybe.
Shrug. Brains. I don't know. They're weird.

Anyway. Those with unusual coping mechanisms will get it. You know. The coping mechanisms born out of made up fictional characters. Because why not. Because brains are weird. You know. Like a giant pod of interdimensional psychic dolphins circling a solar system and constantly communicating the gossip around the universe. Because dolphins are cool like that.

brightrosefox: (Default)
Well, now that I've learned how to properly pronounce "Hypoxic-ischemic encephalopathy" I can do more thorough research into how the brain lesions from periventricular leukomalacia damaged those particular sections of my brain.
As cerebral palsy is a static encephalopathy, yet always comes with co-morbid and co-existing disorders that are progressive, cerebral palsy can sometimes be confused with a disease that progresses. But no. The damage has already been done and cannot change. However, the extent of that damage can spawn syndromes and conditions over the years that can still cause permanent and progressive damage to the brain and the body. Which basically means that I get to smack anyone upside the head who insists that I can be completely cured. Because it's funny.

Also, this is accurate:
Periventricular leukomalacia (PVL) is a type of brain damage that involves the periventricular white matter of the brain. Damage to white matter results in the death and decay of injured cells, leaving empty areas in the brain — called lateral ventricles, which fill with fluid (a condition called leukomalacia).
The brain primarily consists of white matter and gray matter. Gray matter has neural cell bodies, which can initiate nerve impulses, while white matter transports impulses between gray matter cells. The periventricular white matter that surrounds two horseshoe shaped cavities in the brain is primarily responsible for the transmission of nerve impulses that control motor function. Damage in this area can result in spasticity and intellectual impairment.
Myelin is an integral component of white matter that coats and essentially insulates cell pathways, promoting speedy transmission of nerve impulses. Damage to myelin slows and impedes nerve transmission, possibly impairing brain function.
Approximately 60-100% of infants with periventricular leukomalacia are diagnosed with cerebral palsy. Four to 26% of premature infants placed in neonatal intensive care units have cerebral palsy. In severe cases, postmortem examinations have discovered that 75% of premature infants who died shortly after birth had periventricular leukomalacia.
Experts believe intrauterine infections are the underlying factor for periventricular leukomalacia. Membranes around the fetus are affected by the release of toxins, which travel through amniotic fluid to selectively injure areas of the developing brain. These toxins can also cause premature rupture of the membranes and premature birth.

In conclusion: Whenever someone thinks they're insulting me by telling me I am brain-damaged, I always say "Thank you! I am brain damaged! I'm impressed you noticed!" Which confuses them so much that they just stop talking altogether. And then I feel happy.



Jun. 8th, 2013 10:03 pm
brightrosefox: (Default)
The thing about brains is... brains are so complicated. Brains are so complex. Brains need outlets, too. Words are good enough for my brain. I just want to feel safe when I say words out loud. All I've wanted to do was help people. To say, in public, loudly, "You have someone who will listen. You have someone who understands. You have someone who knows what it means. You have someone who will hold you through the worst of the darkness. You have someone who will always shine brighter than any light." Ever since I was a teenager, I was told that I radiated a pure sort of light that drew other minds close. And every time someone who has never seen that light tells me that I'm causing upset or wrongness, that light falters, because how could someone slap me across the face just because I want to speak out through the darkness? I will never stop speaking out through the darkness. I don't care what it costs anymore. I will talk about my brain and its ultimate complications and complexities and sicknesses and handicaps, and somewhere, someone will always be listening. And they will talk about their brains, and we will share our stories, because that is how stories begin.
"Once upon a time, there was a warrior princess born with invisible armor to battle all the damage inside her that would follow her for the rest of her life. For a long long time, there was nobody she could talk to who truly understood. And then, suddenly, there were dozens of people who could understand. And the warrior made it a mission to talk to them all and keep talking. She kept talking even as others misunderstood her, scorned her, and scolded her, since they didn't realize that what she was doing was baring her life wide open, so anyone drawn to her light could share their lives too. She was told, 'Stop putting yourself out there. Stop talking so much about what's wrong with you. Stop focusing on the negative.' And she looked at them, finally, and said, 'No.' Because there was nothing negative. There was no wrongness. There was only her life. And her life was only positive and right. There was laughter, and amusement, and silly things, because even as the pain overwhelmed her, she would keep going, keep laughing. She told stories to those who wanted to listen. She helped many people learn about themselves. She became a teacher, an advocate, a true light in the darkness. She became strong and brave because she had to. And she will have stories to tell for the rest of her life."




I admit, I got a little choked up while writing this. Maybe I do feel much more defensive and upset and naked to criticism than I thought. I'm really, really trying to work on letting all that go. It certainly doesn't help my mental health.
brightrosefox: (Default)
Because people have been asking why my voice "sometimes sounds weird when I talk for long periods of time." And why I often seem "functionally essentially unable to carry out certain tasks without being reminded step by step." (after seizures and severe exhaustion of varying kinds, especially if the fatigue is accompanied by severe spasticity and hemiparesis with hemiplegia.)
Cerebral palsy is funny like that...

Why, hello, thunderstorm.
Why, hello, anxiety attacks and seizure threats and fibromyalgia flare and combined migraine-tension headaches and knee swelling and ulnar nerve entrapment pain.
Why, hello, Klonopin and Ultram and Baclofen and Codeine.
Why, hello, gemstone jewelry that acts like worry stones.
Why, hello, intense deep breathing qi gong meditative exercises
Sometimes you just have to fight dirty with advanced weaponry, you know?
brightrosefox: (Default)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightrosefox: (Default)
"I think this is a broader cultural thing surrounding the commodification of people, especially women. People are seen nowadays as little interchangeable cogs... which causes some nasty shocks when the System's values bump against our more organic passed-down cultural values. Most times we do the cognitive dissonance dance and rinse and repeat.
This time, though, the kids involved posted up tweets so raw that it was a mirror reflecting the beast itself. These kids know that the greater world doesn't give a damn about them, or about anything, really, so why should they give a damn about anything or anyone that wasn't of use to them? The victim was just a passed-out piece of meat for them to use as they saw fit: another commodity to be used and disposed of.
...just like they see the football stars they emulate get used up and spit out by the NFL, useless in their mid-thirties due to repetitive injuries. Just like they see their working folks get laid off and replaced by cheaper overseas labor. Just like you get a car, use it up, and when it breaks down and you can't fix it, you throw it away and get a new one.
This is what the greater context of society teaches us. It's the subtext in everything we do. We're all whores now... and appallingly disposable."
-from a Facebook friend, in a discussion over rape culture and how teenagers are affected

And also I am in a ridiculous battle with my biochemistry and neurochemistry. Hi, I'm Joanna and I'm a recovering anorexic. I refuse to shift the blame to just my brain signals and hormones, but that is about ninety-nine percent of what is happening.
I love eating. I want to keep eating. Food is awesome. Food is the best thing ever.
There are actual signals and nerves running between my stomach and my brain saying "NOPE." If I have an inkling of "I don't want to be fat" thoughts, I can still feel them pushed very, very far back. They are there, which is that percent I will take blame for. Because that is sickness. And it has left scars before. And those scars can be ripped open easily. And it is now my job to make sure none of that happens.
So this has become actually less psychiatric and more neurological: Fuck you, brain, I'm going to eat whether you want to or not. Fuck you, digestive system, you are waking up and taking solids in whether you want to or not.
For me this isn't about anorexia for the sake of fat/thin, this is about a "nervous loss of appetite caused by possible signal problems involving the ventromedial hypothalamus, which is responsible for feeling satiated and full." Because if something goes wrong, the leptin hormone literally stimulates anorectic nerve cells, which in turn inhibit orexigenic nerve cells, which means that the actual desire to eat is stopped. Which is just a way of saying Hunger And Appetite, You're Doing It Wrong.
Also, please, no "I'm so sorry, I know how you feel"s. It is hollow (ha) and too quiet. Give me your experiences, your anecdotes, the healthful foods you love best and the junk foods you resort to. Braid it into stories that can make me giggle and sniffle and want to hug you.

I don't want to be so raw and sad, but the world is really pissing me off lately.

It has been raining wildly all day, and the cats have been climbing all over me, and I've been in pain and fatigue, so Doing Things has been mildly difficult. They are getting done slowly.

Also, "Just drop me off at that asteroid over there" is the meme companion to "I don't want to live on this planet anymore" - both said by Professor Farnsworth on 'Futurama' after he realizes how stupid and awful people can be.

Human brains. Fantastic, fucked up things.
brightrosefox: (Default)

What she said:
And then there's the other, less dramatic stuff - the "abnormal activity" buzzing around my brain on "normal" days. Since I had my first seizure, that "me" who floated outside myself and saw a separate version of reality has never really gone away. When I'm not concentrating hard on something - an engaging conversation, a good book, a challenging project, my wonderful wedding, my fast-paced job, an adorable dog, an extremely delicious sandwich - I'm sometimes flooded with a feeling of "derealization." The world around me appears like a dream, or a movie, or a secondhand vision: a matrix inside a matrix. Sometimes, the world wiggles. At times, I think I'm seeing the fundamental unreality of things as they really are, as in the Hindu concept of "Maya," in which the physical world is an illusion or projection that must be seen through in order to achieve enlightenment.... And at times, I just want to go to bed.
I should add:
People have asked me, "So, does temporal lobe epilepsy affect you when you are not having seizures?" And the answer is a resounding "Oh, yes!" Seizures are just one type of symptom, after all. The brain with epilepsy is routinely being shifted in and out of fantastic and fantastical neural and neurological wormholes and dimensions, in a strange way. There is always a buzzing, a shifting sense of reality. Colors, smells, sounds, shapes, sensations, flavors, textures. Particularly for epileptics with other disabilities or comorbid disabilities, like cerebral palsy or fibromyalgia or nerve damages.
I rarely tell people about the everyday life of my epilepsy, because the common reactions are often variations of "Well, maybe you should change your medication or add a medication or do this or do that because that doesn't seem normal!" or "Oh, no, does this mean something is wrong with you?" Sigh.
So, I have this damaged brain. Stuff happens in my brain. It is my brain and nobody else's. I talk to my doctors and specialists so often that they know me just by my voice on the phone. If something goes wrong or if something doesn't feel right, I take action. I don't say anything much to people who are not medical specialists or medical personnel, because, you know, reactions. But yes. Yes, I am constantly, consistently, and chronically affected by epilepsy. My temporal lobes, my amygdala, my cerebral cortex, my hippocampus, and the various neurons all involved are affected; and thus my perceptions, orientations, sensations, emotions, neurological functions, and memories are affected. When I seem to be drifting in and out of reality, I kind of am. It's not painful, it doesn't mean something is wrong, it certainly does not mean that my medicine needs changing. It's just my brain. Mine, and nobody else's. I cannot be compared to other epileptic people, and other epileptic people cannot be compared to me. But we all have things in common: Our brains are totally weird, fantastical, creative, artistic, and awesome. Most of the time. The Hindu concept of Maya does indeed apply. Also, as many people have told me, some people pay good money to feel the way I feel. *shrug*
It's just my brain.
brightrosefox: (Default)
I see color everywhere. I taste color everywhere. I hear, sense, feel, and connect with color. I cannot imagine a world, any world, without color, even in my dreams, even without my eyes. I speak in color. Everything I touch makes me explode in color.

People ask me why I can't use my mild psychic skills to 'heal' myself. I still have trouble explaining exactly why that is not possible. I can only pull, manifest, and manipulate elemental colors and cosmic colors so much.
I do not expect people to know what I mean. My perceptions are my own. However, I know many people who understand what I mean.

"It's something about the color..."
It's always something about the color.

Often, I dream in octarine, the color of magic. Everything is magic, and everything is color, and color shows me the depths of the universe that I cannot fully reach, not until I join that cosmic wave, full of indescribable colors that define what it means to exist.

This is why religion will never work for me. Not enough color. Not enough expansion. Too much external force. I need more color. I need more inside. I need my whole brain, which cannot happen unless the dead white matter and the damaged neurons somehow move again.

I am my own connection to whatever forces move existence. I am responsible for my own existence. My Higher Brain, my Subconscious, my Quantum Psychic Brain, and my Self are working together to create the most intense positive energy I have ever realized.

My transformation will come only from within myself. I am waiting. I am moving in directions that feel so right to me, no matter what external forces claim. I am opening myself to every past hurt, every negative feeling, and shifting them into the light. It it is a constant cycle, and it hurts so much that sometimes I cannot handle it. Meditative techniques are like lifelines.

The important thing is that I keep going. I keep growing. That is what matters. I am following the colors. I am the colors. I am made of light.
brightrosefox: (Default)
I am writing this revealing post because my Psychic Quantum Consciousness smacked me with Get Well (apply directly to the forehead) and I am finally feeling human. Ish?

My nap refreshed me slightly. So did pain drugs and herbs.
Then I decided to paint my nails twice over: first with Sally Hansen Nailgrowth Polish in Divine Wine and then with Revlon Top Speed Polish in Dress Code.
The Nailgrowth formula will help my nails grow stronger (biotin, peptides, chondroitin, keratin, silk powder). The Top Speed formula will help my nails stay healthy (minerals, gemstone powders, vitamins, silk powder, keratin).
My nails are shimmery metallic dark violet, with shimmery golden dark red bleeding through beneath. I was surprised by the beauty of Dress Code, which is much more purple than Decadent (indigo violet) and more shimmery. Revlon is really good with nail colors. The fascinating thing is how the dark red and dark violet shades are merging as the polishes finish drying. (I am also pretty sure "Dress Code" may also be named "Violet" as the Revlon site does not have a polish color called Dress Code in the Top Speed line, but the shade Violet looks exactly like Dress Code.)
I had also applied makeup this afternoon, since brightening concealer used as foundation and dark red lipgloss made me look a little less ill and exhausted. I felt like an alien, but a pretty alien.

Beautiful colors do help take my mind of how terrible I am feeling.
Eventually I will stop feeling terrible and start feeling, um, in less pain? and now I am finally, finally starting to climb out of this bizarre depressive episode that has been like a rabbit hole lined with steel thorns.
Combined with one of the most severe fibromyalgia attacks in recent months or even years plus attacks from the various sydromes associated with spastic ataxic cerebral palsy, the depression shattered me for quite a while. I am deeply grateful that it began lifting just as I desperately wanted to lie on my psychic battlefield in a deep pool of my own psychic blood, too tired and too drained to keep fighting, willing to let my pain monsters grab me and take me like a trophy to wherever they live when not hunting. I didn't feel alarmed enough to call my doctors, I just felt desperate to sleep for a day straight until I felt human again. I honestly don't know what it's like to feel so darkly depressed, but I would probably admit I was getting fairly close.

All I can say is that I really am feeling better, covered in sunlight and moonlight with healing powers, since I am a witch and a pagan after all. And I can thank every friend I have for helping me, whether they knew it or not. And I can also thank my Higher Brain and my Subconscious combined, which I like to call the Psychic Quantum Consciousness, because quantum brains are cool.

See this entry for various explanations and stuff:
brightrosefox: (Default)
"The human brain is a most unusual instrument of elegant and as yet unknown capacity."
-Stuart Seaton

One of the people on my friends list is about to go into the hospital for a week-long test to see how her epilepsy affects her brain. She will be crashed off her medications for a week. She's afraid. She was told that going off her medication would kill her. But she will be surrounded by doctors and they will take care of her. They need to find out what's fucking up in her brain. Hence, they need to induce seizures.
Seizures can be a scary thing.
Sometimes they can be quite pleasant, like the brain tripping the light fantastic, like seeing the color of magic, like going into a whole other dimension, another reality, a new world.
Seizures can be a very scary thing.

Two points to this post. One, to show my support for her even though I do not know her at all, even though I only know her through her words, thoughts and observations here on this live journal. Two, to show myself how real it can be. How strange it can be. How scary it can be.
And how much I need to remember to live.
Just live.
Because the human brain is a strange and funny creature. We don't really know it, this gray beast stranger inside our skull cages. All sorts of things can happen. All sorts of traumas can hurt it, and this is our brain, this is our central nervous system, this is the creature that lives in us that makes us feel what we feel and do what we do. Love isn't in the heart, it's in the brain. Pain is felt in the brain. Emotion, logic, insanity, it's all in the brain. And when something goes wrong in the brain, my gods, what do we do? This is our most cherished creature. This above all else is the thing we must hold dear.
Our brain. Our brain.
Our brain is where God comes from, the mere concept of something higher than us. The brain is the womb of belief and faith. Without human belief -- which is nurtured by the human brain -- gods die. Human faith is the food and blood of gods. This has been proven, for thousands upon thousands of years. For every god that is born, a dozen others die, in the minds of humans.
Humans need their brains. Being able to believe, to comprehend, to understand, makes us the creatures we are. We can feel. We can love. We can pray. We can hope. The brain is the seat of hope. The brain is life.

I don't know where I am going with this anymore. I have hope for this woman, I have faith, and I have love. The brain is a precious precious thing.
Let's keep ours.


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