brightrosefox: (Default)
Yes, obviously. Sheesh.

http://m.huffpost.com/us/entry/6081918

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)
I did not realize how weirdly difficult it can be to answer the question, "So, what triggered this C-PTSD episode and panic attack?"

I mean, how DO you explain all the fucked up, freaked out, screaming neuronal mess that can cause brief blackouts, episodes of time agnosia, obsessiveness bordering on mania, hyperventilation, emotional outbursts, etc etc etc.

And there is no one thing, two things, any things. That's why it's Complex PTSD. It can be anything and everything. Maybe it's because I read some news articles about police violence against disabled people with no legal consequence for the police. Maybe it's because a friend got triggered by their own things and during our conversation something triggered me completely innocently. Maybe it's because I had a nightmare about that time years ago when a skeevy dude tried to hurt and assault me near a shopping center and was beat up by another guy who just looked at me and said, "Run!" and I fled up the stairs until I couldn't breathe and never looked back. I don't know. I don't KNOW, guys.

You know? You know.

I have reasons for not talking about this stuff outside my psychologists and certain friends. Support is better than silence, though, and I have so much support and empathy to give, so when I need it I reach out to the friends who know.

Anyway. Yes, I took my meds. Yes, I did my exercises. Yes, I ate well enough.

And my cats have not let me out of their sight. (KITTIES)
brightrosefox: (Default)
...and then you find a blog post like this.
http://autistictimestwo.blogspot.com/2014/09/i-wanted-you.html
And everything you felt about being such, deep inside, comes up and out, and you catch it in a clear quartz prism, and you turn it and examine it, and you hold it up to as many lights as possible. And it is all beautiful and even those cracks and dark spots are beautiful.

People don't always pay attention when an autistic person is killed by their parent or guardian specifically because of words like "burden" and "burned out caregiver" and "mericful" and "for the best" and "couldn't take it anymore."

Like Kelli Stapleton - and yeah, typing her name made me feel a pain in my fingers. I have no emotion for her. I could hate her, but this is beyond hate. No sympathy. Kelli took her 14-year-old autistic non-verbal daughter Issy and attempted murder-suicide via carbon monoxide poisoning, rather than seeking actual help, therapies, and treatments for Issy and herself. And she has a cheerleading section. I cannot wrap my mind around this. People are supporting her, calling her brave, shattered, wonderful, because she "put up with lower-spectrum autism" in her child for so long that she finally snapped. Feel sick? Me, too.
This happens dozens of times a year, more, and rarely is it reported. Now, I didn't know until this past spring, when I began navigating the careful waters of autism activism. I can't swim. And some of my new friends are dragons. I keep a lot to myself. However, I need those dragons, those growling leopards, those night-seeing owls, to make sure I navigate.

The point is that when a neurotypicalm able-bodied person says "I love you because you are amazing because of your disability"... that is powerful. I have never, ever felt unwanted; I had intense, deep, powerful love my entire life. However, my social peers, educators, and adult peers obviously had different reactions.
One phrase I dislike is "Don't let your disability define you"/"Don't let your disability become your identity." I laugh a wry laugh. See, a congenital disability is part of what defines me. A congenital disability is part of my identity. I realize and understand completely when those phrases apply to acquired illnesses and acquired disabilities. But I'm someone who is, as they say, disabled and proud.

So that blog post is a big hug.
brightrosefox: (Default)
Copied from Facebook.

1 "When you’re going through a thing like this, you tend to latch onto ANYTHING that isn’t panic inducing and repeat it over and over to avoid the things that are terrifying..."

2 One time, a long while ago, I was having a panic attack, and so I shifted my thoughts to looking for a lost plush animal to move away from the panic, and I told Facebook because I have friends here who understand, and I was told by a random acquaintance that it was unnecessary to post about having lost a toy, that nobody cared because what good would it do, and that I should post more meaningful things.
Panic attacks don't care even more, but at least they start to fade once you work through them and work past them. Internet trolls don't. Especially not those who don't care what panic attacks do to specific people and how they get treated by specific people.
*quick deep breathing*
Goodbye, trolls. I turn away from you. I will quit talking about being harrassed and move on.
Also, panic attacks suck. So I am focusing on my stuffed animal toys and my cat Callisto, who is snuggled up with me like comfort.
That is all.

3 My phone case from Diztronics is deep blue with blue and silver glitter. It's like someone spray glittered the TARDIS. My Galaxy S4 is red, so it is amusing. :-D

4 I did a chaotic organization of medical supplements, loved toys, loved books, skin care; and all the patterns I'm seeing are making me squeal and dance. And now to watch all of Futurama on Netflix, and then Uncle Grandpa, and then The Amazing World Of Gumball, and today is a Soft Clothing day because my skin is being sensory processing disordered and hypersensitive to pressure. Etc. And The Amazing Amanda will understand because she and I are like autist sisterlings.
#littleAutisticthings

5 I decided that resistance bands are better than push ups for my capabilities and issues. Grab each end of the rubber band and lift up to my chest, pull and hold for one second and do as many reps as I can. It works various upper arm muscles, shoulder muscles, chest muscles, and ab muscles if I engage them. Then my brain sorts through patterns to connect to different muscle sets and brain signals that might work best with the hemiplegia. Sometimes I color code the central nervous system activities when I can. It takes a hell of a lot of meditative concentration and it doesn't always work. But it is fun and it is soothing.
Compromise, compensation, modification, personalization. My mother always made sure I could do stuff however I had do.
#LittleCerebralPalsyThings
#LittleAutisticThings

6 "So please, just listen. I know you’re afraid, but being afraid is alright. Because didn’t anybody ever tell you? Fear is a superpower. Fear can make you faster and cleverer and stronger.
And one day you’re gonna come back to this... and on that day you’re going to be very afraid indeed. But that’s okay, because if you’re very wise and very strong, fear doesn’t have to make you cruel or cowardly. Fear can make you kind.
It doesn’t matter if there’s nothing under the bed or in the dark so long as you know it’s okay to be afraid of it.
So listen. If you listen to anything else, listen to this. You’re always gonna be afraid even if you learn to hide it. Fear is like a companion, a constant companion, always there. But that’s okay because fear can bring us together. Fear can bring you home.
I’m gonna leave you something just so you’ll always remember. Fear makes companions of us all."
- Doctor Who Season 8 Episode 4 "Listen"
-Now one of my own personal fear litanies

And also, see, as a signature, I tell stories and engage in conversations as though my Facebook friends are already with me.
It is highly frustrating for some, and I've been harassed over it by random strangered acquaintances and bored trolls because they want to know stone details in rational and logical ways that are opposite from my whimsical spontaneous blurting out wordenings, but they don't realize that I am waiting to reveal, I am preparing those stone details for later in the story and that is how I work and how I brain, because a neuroweird brain like mine isn't very straight, it is curvy and looping and wavy and look over there at the shiny. Autist? Sure. Artist? Yes. Atypical neurology? Forever.
Details are for the comments sections, in which the story continues like a deep conversation. I never plan to engage conversations, but when it happens it becomes magical and it becomes anything.
And so this monologue in an episode about facing fear and patterns of lonely and alone and companionship and need, I see stories and conversations that veer everywhere across a dozen thought processes, neural connections zooming and smashing and spiking as ideas slam into each other.
Come, friends, fall into the story with me! We can converse in the comments. But don't be harsh. Be kind. Be clever. Be an empathic friend, not a severe critic. Be companions, and we will ride these blurted engaged stories buoyed by the strength of companionship.
Spoilers.
http://www.threeifbyspace.net/2014/09/doctor-who-804-listen-quotable-quotes-points-to-ponder/

7 "Scars tell the story of our lives, inscribed upon our skin. I’d not remove mine for the world." -Failure To Fire Comic via comments section
http://ftf-comics.com/?comic=face-reveal-2
It took me so, so long to accept the scars I had as a newborn. Like... three decades. Alex has acquired scars, so I feel that I have a sort of mental dissociation with that for some reason. I still feel irritated, literally and figuratively, with my scars, since no matter what they hurt but are also stories.
Discussion to continue in comments. I'm in a weird headspace.
brightrosefox: (Default)
Sooo, you know how I've been chatting with my neurologist a ton, and also with my psychologist? Neither woman has spoken to the other. But they both recently gave me the same diagnosis.
(Now, I need to stress that I am perfectly aware of the "Stop relying on so many diagnosis labels, it's just medical stuff, what does it matter, why do you care, why do you think people would care" cliche that has been poked at me by, well, many healthsplainers and people who just want me to stop talking so much about my medical history, future, and present. And yeah, I get that. But guess what, I don't care.)
The neurologist was kind of relaxed about it at first, and after I left her office I didn't really consider it. Not until that one session with the psychologist, when she looked at me with tears in her eyes.
It's just that the neurologist used one term, and the psychologist used a different term.
And I would love words from those who are there. Because fuck it, it does matter.
http://www.psyweb.com/articles/depression/chronic-stress-disorder
brightrosefox: (Default)
"...Williams died by the claw of the ghastly inner monster that severe depression lodges in the human spirit, losing a long fight with the unholy ghost." -Brain Pickings (included is a link to a book referencing clinical depression to a holy ghost)

In my last session with my therapist, I kept calling depression The Hollow and a Dark Ghost and The Nothing and, naturally, true pure abyss. In such violent howling emptiness, there could be sound and fury, signifying nothing. And sometimes there is just nothing. Fury would be an emotion, after all.
(And I know why depressed people don't tell the tale, lest they be called an idiot. They'll be mocked today. And tomorrow. Tomorrow and tomorrow and tomorrow. And they are heard no more, and as they are poor players, life is but a walking shadow. Out, brief candle. -And people wonder why we get angry when mental illness gets blamed for so many blameless things and things where mental illness is completely not ever the blame. This is why we can't have nice things.)

People always ask me why I cry when I say I am hollow, empty, ghostly, feeling nothing. Isn't crying an emotion? they say Doesn't it mean you feel something? they say. I think Allie Brosh, who wrote the greatest description of depression I have ever read in her blog Hyperbole and a Half, said it best: It is just something that is happening.
Because I don't feel like crying. I'm crying because my body is having a reaction. A symptom, if you will. Something needs to release. Some sort of physiological reaction must occur, lest I literally fade into ghosts.

I understand some of the reasons Robin did what he did. I don't know why he did what he did. No one knows why. No one can know why, because no one is Robin.
People have the same thoughts and feelings and illnesses as Robin had, and they see everything he saw. But none of them and nobody will ever fully purely viscerally know, truly know why he, Robin Williams, the funniest man of a thousand laughs, physically participated in his own death. Only Robin Williams knows.

Cool story, bro:
Someone who survied her own suicide attempt once told me that for her, there was only pain, agony, chaos, and the kind of despair that consumes utterly. Beneath it was a nearly robotic thought process. Any emotional thoughts came from a distance. As she began the process, she became enveloped in a still emotionless sedating transcendent serenity, and time slowed down, and she literally had no more thoughts. Since she was stopped by other people, she couldn't tell me much more. But she told me that during recovery, she experienced every single one of those sensations at once, from the pain and chaos to the calm transcendence. It took a lot of sedatives and intense biofeedback to help her out of that state and she was put on suicide watch again for a few days. They allowed her family to bring in her kitten, which helped so much that she now advocates for cat therapy when treating mental illness. I think of her when I talk to attempt survivors. I only remember her first name and some day I will forget some of her story. But she lives a different life. Not better nor worse, just different. She has learned lessons. She doesn't regret things. She still battles symptoms and switched to a new drug regimen and still does biofeedback. She hasn't had any suicidal ideations in over a year. She also treats her cat like the most important sentient being in the universe, since he helped save her life. Cats are awesome.
brightrosefox: (Default)
So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.
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)
Back pain back pain back pain backpain backpain backpain NNNGGHH.
It's the lumbar area, leading to sciatica down both legs. Of course, you know? I've got an appointment with my new orthopedist on January sixth, and we're going to get be fitted for true customized orthotics... although I am going to insist they be cushioned, if not highly comfortable. The ones I had as a teenager actually made my feet hurt whilst walking. I still have the left one from those days. It is not comfortable. I understand practicality and function, but still.
Nnngh. Back, hips, legs, knees, ankles. Come on, drugs, work faster.

When we came home from grocery shopping, I looked up at the stairs and whispered, "Mama's home, Rose." I had meant it merely for her memory, for her spirit that now lived in the house, free to leave the clay statue that was a vessel, as Adam had not bound her to it. Adam said, "She's still gone, sweetheart." And I knew, and I reminded him that it was just... oh, I couldn't even find the words. It was just for her ghost. But he knew. We held each other and he knew.

My friends have cried for me, I think, more than I've cried for myself. I will have pockets of moments in which I will break down in gasping sobs, but they are so quick and triggered. A brush that had moved through her fur while I was comforting her in her lethargy, before I understood what was really happening, tufts of fur clinging to the bristles that I may not remove for a while. My pillow, and the soft bean-bag type pillow behind it that served as a general cat pillow but which was generally used by Rose especially in the mornings. A bag of Greenies treats that I realized I no longer had to move to a high place where Rose couldn't grab it and tear into it. Sitting in this desk chair, now, and knowing that Rose will never jump onto my lap and rub her cheeks over my mouth. She will not curl up on the floor, waiting for me to announce that Mama is going to bed so she can lead me there and see me to sleep. Oh. Yes, I'm in tears now. Oh, babygirl. Luna is on my lap now, kissing me, nuzzling. In her own Luna way.

We will be adopting another cat. Yes. It may be sooner than anyone thinks. I've already dreamed of her. I've already named her. I already know her age range. But... you know, someones through the grief and the numbness and the deep deep shock and the horror of physical death, we know deep deep inside that even if it takes only a week or two to get another pet, it is nothing like a replacement. It just means that the throbbing empty hollow burning in our hearts might start to heal, just a little. Luna is still my heart and soul, my queen and my moon goddess, my precious love. Jupiter is still my beautiful big boy, my chatty feline child who brightens my day just by smiling. The new kitten, the new young cat, will never be Rose. She will be herself.
Rose is never coming back, not even in a new incarnation. I'm not even sure I want that; it might hurt too deeply. Rose herself was already the reincarnation of Adam's patchwork dog, Ralph. Rose spent five glorious years learning to love and be loved. In Buddhism, that is a vital thing. All animals understand this. It is slightly Jainist. Adam and I, in our eclectic paganism, are mildly Buddhist in various, often conflicting, ways. It is not possible for us to be fully Buddhist in any way, but eclecticism is a wide arena.

"Life is a journey.
Death is a return to earth.
The universe is like an inn.
The passing years are like dust.
Regard this phantom world
As a star at dawn, a bubble in a stream,
A flash of lightning in a summer cloud,
A flickering lamp - a phantom - and a dream"
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.

Lights.

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."

bluedarklotus

dragongirlsky

auroradragon

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)
I did not write this. I just shared it.

***

Originally posted by [livejournal.com profile] naamah_darling at NIMH does the smart thing, ditches the DSM
The National Institute of Mental Health is abandoning the DSM.

This is potentially monumental, and I've seen very little mention of it anywhere. Partly, I think, because people don't really grok how big a deal this is.

This is a very good thing, and for those who don't grasp why, I will try to explain. (Though the link does a really great job of it, so really, you can just go read it.)

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a big-ass book released by the American Psychiatric Association that provides a standard method of categorization for mental illnesses based on related symptoms. Like a dictionary, it has given doctors, psychiatrists, and other medical professionals a common vocabulary with which to describe and define mental illness, so they are using the same terms in more or less the same ways, and arriving at consistent (even if they are sometimes inaccurate) diagnoses. It has been revised several times since the first edition in 1952, and has been released in four, soon to be five, major versions.

It has been a useful tool, but it is now insufficient. Over and above the fact that it has always and still does pathologize certain normal, healthy behaviors, which I won't go into here, it relies on a primarily medical definition of mental illness. It does not place a diagnosis in context with the patient's environment or upbringing, etc., or even with their experience of their symptoms.*

That would perhaps be tolerable, but . . . the DSM does this by relying on a purely symptomatic mode of classification, without taking into account underlying neurological/biological causes – different things may cause similar symptoms. So, it reduces mental illness to medical causes . . . but doesn't then require there to be a common cause. Disorders are defined by symptom clusters, and not by actual, you know, hard data about neurotransmitters, brain activity, and so forth.

To liken it to something more familiar, chest pain might be caused by blocked blood vessels in the heart, or might be caused by acid reflux. If we were working by the DSM model of diagnosis via symptomatic classification, they would both be the same, yet I am sure every single person reading this understands that a heart attack and heartburn are not at all the same thing. Classifying them under the same category and treating them the same would be disastrous. (The linked article uses the exact same example, yes. Because it's perfect.)

The more we learn about mental illness, the more we learn that it is a tremendously complicated thing. What seems to be one category of illness (depression) can actually be two or more conditions which appear similar but stem from very different biological causes. Depression might be caused by a lack of serotonin. It might be caused by a lack of dopamine. It might be caused by a thyroid imbalance. There is more than one chemical irregularity responsible for the set of symptoms we call "depression."

As an example from my actual life, until recently, bipolar disorder was not divided into bipolar I and bipolar II. There was just bipolar I, which is the classic "manic-depression" that everyone's probably heard of. You didn't get classified as bipolar unless you had manic states. Because this automatically excluded people whose bipolar disorder skewed toward the depressive side and seldom or never ticked into the manic, or excluded people who didn't recognize mania for what it was, bipolar II was often diagnosed as unipolar depression.

When you treat bipolar II like unipolar depression, you can get a very sick and possibly dead bipolar II person. At the very least, you get a person who doesn't get better, because bipolar disorder does not just go away. SSRI drugs, often the first line of defense against depression, usually do not work on bipolar depression. You can see why this sucks.

This mistake is part of why my mother was never diagnosed properly, and why her depression was never managed. She suffered needlessly because of it. For a long time, I did, too. There are ugly real-world consequences to the symptoms-only approach. Not just human suffering, but jacking up data that could have led to better treatments.

Imagine all the bipolar II people who were thought to be depressed who were doubtless included in data collections, in experiments, altering the results. SSRIs don't work on bipolar people, but bipolar II people totally made it into SSRI testing. We can't know what kind of effect this has had. We can know that it isn't good. It's not leading to better drugs. It's not leading to better treatment. It's leading to mistakes. It's leading us to ditch treatments that only work on 10% of people with a particular symptom, when those 10% are mostly people with a totally different underlying condition. That treatment, applied only to the people with that condition, might be 60% effective or more. We have lost opportunities because of this. It is a certainty.

Back in the dark ages, we went at everything symptomatically because we had no way to understand what was happening inside us. We thought that fevers were caused by poisonous emanations from the earth, or evil spirits. Medical treatment was often "bleed more, poop more, puke more, one of those will make you feel better." Well, now we understand things a lot more thoroughly, and we acknowledge that treating the root cause of a thing is better than going after the symptoms and not resolving the issue. Why address lethargy, weight gain, depression, constipation, high cholesterol, and infertility with who knows how many drugs and treatments when you could just treat a simple thyroid hormone deficiency with one very cheap and easy to obtain drug?

This approach has not really spread to mental health yet. Frankly, that's because we do not yet understand the causes well enough to treat them. Without understanding the causes, something like the DSM has some value, diagnostically. It gives us something to go on, and its not completely horrible or inaccurate or anything, just inadequate and far too broad. Clinging to it is unjustifiable.

NIMH's new protocol, the Research Domain Criteria project, or RDoC, is not a new classification system, it will be the framework for gathering data to fill in the gaping holes in our understanding of how mental illness actually works.

Essentially, NIMH, which carries out a great deal of very important mental health information-gathering and research, is jettisoning the DSM as a classification system for purposes of that information-gathering and research. Currently, the DSM classifications are used when researching mental illness, which biases results inherently in favor of those classifications.

It is not going to transform what doctors do and how they treat mental illness starting tomorrow. What it will do is lead us to a better understanding of mental illness, and over time that will lead to radically better treatment.

This is a big step forward for mental health research. In my opinion, we will start seeing results surprisingly soon, as the first waves of research yield more accurate information. There is so much we don't know that increasing the data set even a little bit is going to improve things.

I'm excited about this. I look forward to seeing what new things we learn.

(The fact that NIMH's announcement comes only a few weeks before the DSM-5 is released amuses me.)

* Example: I "hear voices." Also, I am sometimes other people, a little bit. The DSM doesn't acknowledge those things as a deliberately and carefully cultivated coping mechanism, only as a bad thing indicative of other bad things. In context, it is healthy. In the book, it's pathological. Regardless, it's a sanity-saver, and one I continually seek to reinforce. Doesn't matter how it looks on paper. Say hello to the boys. They keep me safe.

X-posted from Dreamwidth. Comment count: comment count unavailable
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)
Still fucked up, crappy, reclusive, snarling, burning with electric pain, etc.

To quote a good friend:
"I've been doing okay, but it's like... I just get my feet under me, and something else knocks me over, and then it takes me forever to get up again. And, frustratingly, embarrassingly, it doesn't take much to unbalance me.
People say not to let your illness define who you are, and I agree with that, but often there's no letting about it. It does dictate what you are able and are not able to do. Even when you are able to do more, that's the illness letting up. So a very large part of my frustration is born of being unable to be the person I desperately wish I was."

No arguments, on that, please. I cannot right now. I just... I am too tired and snarly. I was born damaged, I grew up damaged, my damage got worse in my adulthood... I'm not going to pretend I am made of roses and kittens and songbirds. I am a cripple. I am disabled. I am fucked up. I am I AM. Primary to that, I am Joanna, a writer, a reader, a sensitive, a weird nerd with geek properties, a polytheist polyagnostic pantheist pagan who agrees with all the skeptics because everything is true because we have High Brains mashed with Subconscious Brains that work to make Quantum Psychic Brains, and I know I can't prove a damn thing but I don't care if I can't, because I know things and I don't care if my skeptics doubt me.
If I "pray" to my Quantum Psychic Brain that created gods and spirits to fit my needs, so be it. If my "prayers" to my Quantum Psychic Brain are mostly about treating and healing my horrible terrible chronic pains, so be it.

I am who I am. And you know what? My disabilities really are part of that. Other cripples may argue, and I will let them. Nobody ever is the same, and why should they be? I am Joanna the Peaceful Dragon Warrior Princess of the Mediterranean, full of disability, and I. Am. Proud. My spears and swords are raised high.
And that is all I will say for now.

http://brightrosefox.livejournal.com/1570608.html





chakradragon



lotushands

powerlight
brightrosefox: (Default)


When there is darkness in front of me, there is light at my back, even if I cannot see it. If the darkness surrounds me and melts into me, so does the light, even if I cannot feel it. I always try to find my light, even if I have no idea where to start.

I have been so psychically tired. So fatigued. So exhausted. Today I got a wonderful day-long energy boost from supplements like yerba mate and green coffee extract, containing small amounts of caffeine that were smooth enough to help me without side effects. However, the fatigue and exhaustion were very mental and emotional. Depression is horrid. This will end, with help and remedy and treatment. But it is still horrid, and it will return, and even though I will always stand guard and fight, I get more and more beaten down.

Replenishing myself can be fun, exciting, fascinating, and weird in all manner of ways, since I love all sorts of reclusive nerd and geek activities, certain books and songs and films and and television series that entertain me over and over without boredom or annoyance. I can watch every episode of "Futurama" and "My Little Pony Friendship Is Magic" and "Babylon 5" and "Buffy The Vampire Slayer" and most of "Star Trek Deep Space Nine" and "Firefly", read every Seanan McGuire book, listen to certain songs, watch movies like "Boondock Saints" and "The Princess Bride" and "Serenity" over and over and over until words are cemented into my mind and I am babbling character quotes everywhere.

I am so very relieved for the pharmaceutical pills and supplement pills that I can take every day, plus exercises and meditative techniques that really do help me despite what people think.
I am constantly astounded every time someone says, "Wow, are you still having problems? I thought that treatment was supposed to help already! Why isn't that pill working yet?" Etc. Oh, lovelies. No, those treatments and pills have been working and helping. You just haven't seen how. You can't see inside me. The treatments just aren't working the way you think they should, that's all. They work slowly, they sometimes fail because nothing is perfect, and quite often they need to reroute around my severely damaged brain processing, which desperately needs a special reboot. Maybe hypotherapy, something non-drug to really rewire and reconnect that dying and the dead inside my neurology.
And so my fighting continues, and I wash the psychic blood off so often that I am either raw or glowing.
It echoes my outside a little, the way I care for my skin, the way I wear careful cosmetics. How my distorted body image penetrates so deep that I cannot look at myself to see what others see. But I am trying, my lovelies. I really am. I am always doing my best.

Today, I applied a nail polish called Sally Hansen Nailgrowth Miracle Nail Polish in Divine Wine. Love it. Divine Wine is a dark, dark wine red, more red than wine. Ruby or crimson or pomegranate red. Very shiny, fairly shimmery. Plus, the varnish itself actually contains nail-strengthening ingredients, like biotin and keratin and peptides and chondroitin, so it could essentially help nails grow stronger and quicker, which is awesome. This pleases me.
My fingers look bloody and gorgeous. The color reminds me very much of a darker version of Sally Hansen MoistureTwist Lip Gloss in Cherry Twist. Or maybe It Cosmetics Vitality Lip Flush in Pretty Woman, which is a very deep, dark bloody cherry brownish berry red, which I am wearing in most of my profile photos.
A nice bing cherry red with slight gold shimmer. Dark red like cherries or pomegranates or movie blood or maybe really dark red wine, not purple but maybe with brown and pink undertones.
The varnish got all over my cuticles and I look like a baby vampire who got too excited with a first feed. There are streaks of colors on my left palm and thumb and index finger ad my right pinky finger, and it's sort of deep pinkish red with tiny sparkles.
I cannot stop staring at my fingers. So shimmery. So red. I want to drink pomegranate juice mixed with wine. I want to cover myself with healing energy, defensive energy, all the power I can find, the colors of the elements and blood and the sky and magic and the universe itself.

And so, I am a warrior princess pixie dragon girl who will always be around when someone needs help or advice. I will always lend a hand, a shoulder, a spear, a sword, a shield, a flame, a cane, a crutch, a pair of wings. I will never stop. It is what I do. It is what I am.



brightrosefox: (Default)
Dear Bullshit: Please don't start happening around me until this depression has lifted at least a little. I will do my part by refusing to engage in arguments disguised as discussions, whether on Facebook, forums and communities for varied disabilities, or blogs.
I am not well at all. My husband will be home soon, we will run errands tomorrow, and I will try to put myself on autopilot with the toughest strongest masks I have, because in my emotional brain I just want to curl up, read books and blogs I like, eat only if I feel very hungry, and not talk to anyone unless I think there is something worth talking about.
I know that everyone I love on Facebook and Livejournal will rise up and stand with me and give me strength, hope, love courage, and light. I am so very deeply grateful and just the thought moves me to tears. But I have no idea what my depression trigger was or is, and I don't want that unknown trigger to strike again and knock me down even deeper. I am responsible for myself and always will be, but it is always beautiful to know I have friends at my side, at my back, and standing in front with open arms.
You'll do that, right? You'll love me? Even if I am a fucked-up, mentally screwed, clumsy idiot who can't even work around Sensory Processing Disorder to figure out why the entire world feels like one massive tactile and visual scream inside my head?
brightrosefox: (Default)
People are amazing in so many ways. I love humanity. Sometimes.

Four different times today, which made me laugh because it was so interesting, I got the equivalent of "You seem fascinating, and I want to get to know you better... but oops, I can't be your online friend ever because of something about you that is inborn and natural to you but that I personally don't like, even though we will never meet and you may not be like all the other people who have the quality that I dislike."

I can't decide if that is some bizarre form of reactive discrimination or an instinctive fight or flight instinct, but it was really fascinating from a psychological viewpoint. Like, literally, the instant I mentioned the quality, they backpedaled with "Oh crap, nope, I can't hang out online with you, sorry, you remind me of bad things." The people seemed to have no desire to ask why I had that quality, or if I was different from their past friends with that quality. I wasn't bothered. In fact, I was so fascinated that I did a web search on how people on the internet make those quick decisions on whether or not to be friends.

It really is so cool, seeing how people act, react, and interact online with no voice patterns to hear, no facial movements to read, no body language to interpret. Online communication is initially flat and not based on reactions in time, meaning that one could take minutes, hours, or days to reply, especially if it is through email.

How often has any of this happened to you? I almost want to write up either a report or a fictional story.
brightrosefox: (Default)
I shall not be seeing this movie because scary, but this is good enough.
http://m15m.livejournal.com/23209.html
(Prometheus In Fifteen Minutes, by Cleolinda Jones)

(Also: Spoiler Warning! If you have not seen the movie and want to see it and hate spoilers, do not click, because spoilers. Also, spoilers. There, I warned you. There are spoilers in this link about the 'Prometheus' film. I mean it.
If you want to read something really funny or don't care about spoilers or don't want to see the movie and want funny spoilers or all of the above, click on. It's really funny. Also, this is a comedic review of the movie "Prometheus" with spoilers.)

(Also: The reason I say the above is because you would not believe the screeching and capslock and harrumphing and accusations of betrayal I have gotten in the past for spoiling films and shows and books even a little. Personally, I love spoilers and would welcome them no matter the franchise, because I hate suspense. I am the type of fan who, if watching the film on something with a fast forward button, will fast forward past the suspenseful bits to get to the good parts. I will actively seek out spoilers. I genuinely, literally, am completely unable to understand or relate to spoilerphobia, which I honestly find foreign and strange. However, I have learned my lesson, and I have learned to post long paragraphs with the word "spoiler" written throughout at least half a dozen times, because I will not be held responsible for the clicking and reading.)

I hate scary movies. I hate zombie movies, I hate gory movies, I hate psychological torture horror movies, I hate torture porn movies. However, I enjoy reading spoilerific reviews and recaps, because then I don't have to actually watch what happens.
Also: The reason I was able to read the notorious My Little Pony fanfic "Cupcakes" is because I allowed myself to nitpick all the editing issues and snark at the craziness with the violent torture, vivisection, body horror, and live cannibalism procedures (I also apologize for even mentioning it because some fans can't look at Pinkie Pie the same way); I just imagined it as a comedic cross between Sweeney Todd, Buffalo Bill, Ed Gein, and Jack The Ripper, which yes, is kind if insane).

Sometimes some things do need to be laughed at, seriously, otherwise nightmares happen. A lot. BUT! But but but!!! However!
Some things cannot be laughed at, ever, seriously, otherwise triggering happens, and triggering is Very Very Bad. I hate when people don't take triggering seriously. For example: I was once in a group without my husband had no transportation home and everyone wanted to go see "Freddy vs Jason" in the theater. I kind of had no choice for reasons. I spent the first half of the movie with my eyes mostly closed, able to watch the non-gory scenes but silently panicking at the bloody scenes, which was a lot. I spent the last half of the movie outside, wandering the halls and the restroom, and came back in the final ten minutes, and pushed myself to watch. Lots of frantic breathing and meditation. Also, this happened when I was taken to see "My Bloody Valentine 3D" and had my eyes closed a lot, and the reason I went was because bribery and because I would have been left alone and because I loved my friends, and yes I was treated well to things afterwards but I never forgot what I saw in the theater, and I now understand that it is okay to put my foot down and refuse even if the people convincing me are my loved ones.
In conclusion, if your friend really really really really does not want to watch certain movies with you, respect that, please. Seriously.
Also, this is important. It is about Boundaries:
http://jimhines.livejournal.com/636066.html
brightrosefox: (Default)
I shall not be seeing this movie because scary, but this is good enough.
http://m15m.livejournal.com/23209.html
(Prometheus In Fifteen Minutes, by Cleolinda Jones)

(Also: Spoiler Warning! If you have not seen the movie and want to see it and hate spoilers, do not click, because spoilers. Also, spoilers. There, I warned you. There are spoilers in this link about the 'Prometheus' film. I mean it.
If you want to read something really funny or don't care about spoilers or don't want to see the movie and want funny spoilers or all of the above, click on. It's really funny. Also, this is a comedic review of the movie "Prometheus" with spoilers.)

(Also: The reason I say the above is because you would not believe the screeching and capslock and harrumphing and accusations of betrayal I have gotten in the past for spoiling films and shows and books even a little. Personally, I love spoilers and would welcome them no matter the franchise, because I hate suspense. I am the type of fan who, if watching the film on something with a fast forward button, will fast forward past the suspenseful bits to get to the good parts. I will actively seek out spoilers. I genuinely, literally, am completely unable to understand or relate to spoilerphobia, which I honestly find foreign and strange. However, I have learned my lesson, and I have learned to post long paragraphs with the word "spoiler" written throughout at least half a dozen times, because I will not be held responsible for the clicking and reading.)

I hate scary movies. I hate zombie movies, I hate gory movies, I hate psychological torture horror movies, I hate torture porn movies. However, I enjoy reading spoilerific reviews and recaps, because then I don't have to actually watch what happens.
Also: The reason I was able to read the notorious My Little Pony fanfic "Cupcakes" is because I allowed myself to nitpick all the editing issues and snark at the craziness with the violent torture, vivisection, body horror, and live cannibalism procedures (I also apologize for even mentioning it because some fans can't look at Pinkie Pie the same way); I just imagined it as a comedic cross between Sweeney Todd, Buffalo Bill, Ed Gein, and Jack The Ripper, which yes, is kind if insane).

Sometimes some things do need to be laughed at, seriously, otherwise nightmares happen. A lot. BUT! But but but!!! However!
Some things cannot be laughed at, ever, seriously, otherwise triggering happens, and triggering is Very Very Bad. I hate when people don't take triggering seriously. For example: I was once in a group without my husband had no transportation home and everyone wanted to go see "Freddy vs Jason" in the theater. I kind of had no choice for reasons. I spent the first half of the movie with my eyes mostly closed, able to watch the non-gory scenes but silently panicking at the bloody scenes, which was a lot. I spent the last half of the movie outside, wandering the halls and the restroom, and came back in the final ten minutes, and pushed myself to watch. Lots of frantic breathing and meditation. Also, this happened when I was taken to see "My Bloody Valentine 3D" and had my eyes closed a lot, and the reason I went was because bribery and because I would have been left alone and because I loved my friends, and yes I was treated well to things afterwards but I never forgot what I saw in the theater, and I now understand that it is okay to put my foot down and refuse even if the people convincing me are my loved ones.
In conclusion, if your friend really really really really does not want to watch certain movies with you, respect that, please. Seriously.
Also, this is important. It is about Boundaries:
http://jimhines.livejournal.com/636066.html

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