brightlotusmoon | Entries tagged with humanity

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... )

Current Mood: relaxed

...hush now; let me speak...
And sometimes there are days when all you can feel is that pain-filled urge to fly and fall, and all you can think is "If only I could make the world fly and fall with my brain; if only I could win my own game, always."
( Read more... )

Current Mood: weird

Photos of nude women being people.
http://www.themilitantbaker.com/2014/08/expose-shedding-light-on-collective.html
In fact, I could see many of these being models for my mother's art classes.

Current Mood: amused

So, today is Day Of Mourning for disabled people murdered by caregivers and parents. And I found this, and oh gods.
http://autism-memorial.livejournal.com/
That is too many like me dead.

http://www.buzzfeed.com/virginiahughes/autistic-people-spark-twitter-fight-against-autism-speaks
LOL, when trolling works well for a good cause, it is fabulous.
So, recently, someone I've known online for years pissed me off- and I held my tongue for personal reasons- by writing something along the lines of "I don't think you're autistic. You didn't used to act like it and you still don't. Weren't you just always high functioning and now less so?" And I found a really good quote that could've been a cool comeback. Thanks, Buzzfeed comment section!

"Functioning labels are a social construct, they are also offensive - and by offensive we mean oppressive and prejudice - we're all Autistic, it's a spectrum condition so it effects us differently and to different severity which can change throughout our lives. You're making assumptions about someones functioning based on personal judgement, and dismissing the voice of Autistic people based on your prejudice."

What matters is how it actually truly does change over time. It was suspected within me when I was a child in the 1980s, but I spoke fluently and powerfully and I was a very sociable huggy feely girl, thus barely fitting the stereotype of that time, ditto in the 1990s and the 2000s. As an adult, my brain kept changing and altering, and my autistic tendencies were spotted prominently by people who knew, who understood, autistic people and doctors trained well. I was able to stop calling myself abnormally weird. I was able to realize that having a name for a thing - and a community, full of new friends - was one of the best medically important moments since I was able to give a name to epilepsy and then fibromyalgia, names of things that got powerful and honest attention.

Over the years as autism and autistics became more studied, details changed. Which is what I think bothered people like the person who wrote me. "How can it still be autism they keep changing it over the years?" people ask. "If it changes, what's the point of a spectrum?" they ask. I dunno. I might ask that of anything in life, really. Everything tends to flow in severity and function over time, whether it is few years or a few days. I didn't just pop up autistic, regardless of what anti-vaxxers insist. Autistic folk everywhere who never realized they were #ActuallyAutistic are just figuring themselves out, and I think my online friend and many others have been genuinely startled by the idea that even the details of diagnosis and spectrum itself are changing. What do my Actually Autistic friends say?

Current Mood: amused

Quotes to repost to blog:

Also, in addition to being a really fecking stupid idea, trying to discourage the use of labels is an utterly futile one. Referring to definable concepts using words is human nature. Centuries of biological and cultural evolution has created a species that NAMES things. It is among our most fundamental psychological drives. We are the species of science and of literature; of identification and expression. We are Pan narrans, the Storytelling Chimpanzee. Verbal communication is OURS, as a field, like hardiness belongs to the cockroaches and swimming belongs to the fish. Our species is too intimately tied to the concept to back out now. When one encounters a concept that has no name, it is hard-to-impossible for a human being to avoid naming it, if only in the privacy of their own head. Labels are not only part of how we communicate, they are part of how we think. I see a chair, my brain says “chair”. I see that someone is upset, my brain says “upset”. It is difficult to efficiently think about something that does not have a name, and even more difficult to do so without resorting to making one up. Have you ever actually sat down and tried to find and list lexical gaps in your own language? It is nigh-impossible to do so without noticing two things: firstly, that there is very little that we don’t yet have a word for, and secondly, that our instinctive reaction upon identifying such a lacuna is to think “This thing totally SHOULD have a name.” So it has been since not long after we first developed what would later be labelled “sapience”. To oppose the use of verbal labels is to declare oneself to be a glitch in human development; an evolutionary throwback to those wordless days when Homo sapiens wasn’t yet capable of living up to its own name.
Basically, if you actually used words, made out of letters, to type a statement of opposition towards the concept of labels, then your argument is invalid and you have already lost.

I care because of all the time I spent lost in the wilderness, thinking something was missing. I care because of all the time I spent looking at other people and seeing that I was fundamentally different than them, thinking something must be broken inside me. I care because of all the time I spent not knowing where I fit in the world, thinking that I must not fit anywhere.

I care because I don’t want anyone else to go through what I went through.

I have a place now. I have a name for me.

I’m not broken anymore.

I can’t make you understand what it’s like to go through that, but I can tell you that it brings tears to my eyes when I think about how many questioning people in the asexual tag I’ve helped to realize that yes, actually, they are asexual, and no, that’s not a bad thing, and yes, that’s a real orientation and yes, it’s okay to describe yourself that way. People are confused and hurting, and they need to hear that their experiences are legitimate. If a simple label can help, then so be it.

If you have a problem with people affixing words to themselves as a means of reassurance and consolation, then you can shove it. Your opinion is irrelevant. Every other set of people who uses some label — don’t need to justify their choices to you. They owe you no explanation. And yet the internet is littered with explanations if you know how to find them, because people like you are so numerous that they’re compelled to write everything from snippets to essays to articulate what you failed to figure out on your own.

Why is it even necessary for them to explain to you, hm? Why do you need to hear it in the first place? Why do you want to stop us from making ourselves feel a little better after being ground under the heel of normativity? Here’s an idea: instead of asking why they think it’s “necessary” to label themselves, ask yourself why you object to it. And for Pete’s sake, don’t give me that “limiting yourself” crap.

Ah, man, so many people have so many issues with labels and it doesn’t make sense that they do. Most of the time, I feel that people have angst with labels because they don’t want to admit that the shoe fits, like people who dislike the word “bisexual” but prefer to be “heteroflexible” which is just another label to describe being bisexual but with some sort of difference (which is really no difference).

I ‘preach’ to people that without labels, we would be unable to identify the world around us – and it’s necessary and vital to our existence that we do this – we can’t function without labels and, as such, all we need to do is know what they are, how they’re applied, stuff like that, and just get on with our lives. But, we also know that words have power and that some words can be used as weapons and to attack each other at the most personal of levels… and all because of the ages-old mentality of “if you’re not with us, you’re against us” and that habit we have of wanting to destroy that which is not like us.

Labels don’t upset me because they can only have that kind of power if I allow it – I choose not to allow it and I can’t really understand why other people choose to give them this kind of negative power.

Current Mood: accomplished

A fantastic quote on feminism that I want to remember:

" Equalist as the replacement word sounds like an active, willing erasure of the specific problems faced by each of the marginalized groups in society. Each will have their own pitfalls and villains in the public eye, yet the approaches to solving the problems are unique to themselves. Erasing the various identities and struggles to homogenize them to allay the delicate sensibilities of people who don't want to be associate with the word "feminism" which had somehow become a bad thing in society, will not help matters at all. It's actually hurting our causes more to erase the specific problems and people from our awareness. And people can also be for equality when it comes to race or disability, but will have startling misogynistic views. Equalist only serves to placate the misogyny by implying that identifying with women's struggles is somehow beneath people."

Okay, first thing:

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

***

Unrelated, copied from Facebook.

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

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

***

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

***

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

***

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

***

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

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

Post by Boycott Autism Speaks.

***
http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8
(Nick Walker is awesome)
Autism as a neurocognitive variance. Indeed. It's a disability because it hinders how we interact with life all the time. But there is nothing wrong with us. It's just a rewiring of our brains before birth or at birth.
Like, with me. I was born a fetus. I was a 26-week-old fetus when I was "officially born". My developing brain didn't have time to pick and choose. It just grabbed whatever it could, crammed stuff in, got a random shiny new operating system that was able to work around all the dead white matter, and figured it was good enough because I still needed to finish growing into being a baby, you know? Like, "Fuck it, we'll deal with this brain damage later, just keep the body going, okay? Move it move it move it avoid the gaps in the dead parts, come over this way, this construction project is gonna take a few more months than planned, so we don't have time for sick days, guys. What's that OS? It looks kind of tangled. That's fine, it's shiny, build it in, hook it up, whatever. Hey! I told you guys to avoid the dead zones! Awww daaamn, somebody get a new team over there please? No workman's comp here, this is preterm, okay? Just go go go..."
And that's where I got my brain.
So, dear allistic and neuro-typical assholes who question my right to exist, who insist that kids like me are missing, stolen, lost, forever silent: Fuck off. My brain worked hard to be itself, and just because my OS isn't yours doesn't make me lesser.

Current Mood: weird

Holy random acts of kindness, Batman.
After getting my flu vaccine, I went to look at the cane rack, because they have this beautiful blue and silver one that looks like dragon scales, and I have been waiting for discounts and coupons so I could get it. The price is under twenty dollars, but still.
A middle-aged man who looked so much like Idris Elba that I did a second take, also reached for the blue silver cane. Our eyes met, I smiled briefly. He said, "You know, I bet this would make an awesome magic staff for cosplay."
I grinned and said, "Good plan! I should at least join a game just so I can brag. Or just be my paganish elf self and cosplay every day." Which was blurted out because my filter is so thin.
The Idris Elba lookalike chuckled. "I adore that idea. I just pray to all mighty Atheismo that we aren't going too deep. Like that Tom Hanks movie."
My jaw dropped. "Duuude," I said. "Futurama reference plus obscure D&D rip-off movie nee book reference? Cripple high five!"
We high fived and missed on purpose, stumbling. "Mild cerebral palsy, spastic hemiplegia" I said. "Mild cerebral palsy, diplegia mixed," he said. "And knee arthritis."
"And sciatica," we said in union, surprising ourselves.
"Fibromyalgia and epilepsy and autism too," I added.
He said, "My twin nieces are autistics! Their world is so awesome. I think they prefer me to my brother when they're in meltdowns, they talk about what's going on in detail."
"Awesome!" I said.
At this point, we had been staring at the canes and I had been avoiding too much eye contact. I was about to ask the Idris Elba lookalike about advocacy. Then I saw a gleam in his eye and sensed a topic shift. "Hey, listen," he said. "I'm a proponent of the pay it forward thing. I know we're strangers, but I do know enough about you that you really want the dragon scale cane."
I tilted my head. "Yeeeaah?"
"So, okay." He pulled some pieces of paper from his pocket. "I've got a buy one get one half off for this brand of canes. I will buy you your cane. What do you think?"
I blinked a few times. I looked at him. He wasn't hitting on me. He wasn't being creepy. He was just a fellow cripple offering help.
"Okay," I said, "thank you! That's really kind."
"Hey, the community needs all the assistance we can get from each other. Cripples helping cripples, you know?"
I smiled. "Totally."
As we walked to a register, he said, "I want you to know that I had no intention of hitting on you. I see your rings, and for all I know they could mean something else. But while I think you're a gorgeous-looking person, I have no plans on being a That Guy. I punch Those Guys on a regular basis."
"Huh?"
"Physical trainer. Not so much punch as pinch in sensitive areas. Men can be scum."
I giggled. "Hashtag Not All Men!"
He laughed. "Anyway, let me pay for everything." He nodded at my basket, which had a few comfort items. I immediately said he shouldn't, since he was getting me the cane.
He then put my basket on the conveyor belt, looked at me until I noticed that his eyes had gold rings, and said, "Then pay it forward. Help another cripple." The corner of his mouth turned up. "Even if it's just donating to help someone get better access."
I nodded. I was going to cry any minute. He paid for everything, put his things in two totes and put my things in two more totes. He saved me almost forty dollars.
He said, "I would offer you a ride, but my friend's picking me up so we can go back to Philly. It's been a great road trip so far."
I nodded. "It's cool. I'm going to take the bus home anyway." I was feeling giddy. "Well, obviously we had this encounter for a reason. So. It was lovely meeting you, clone of Idris Elba."
He threw back his head and laughed. "I get that a lot. Same to you, clone of Mia Sara. Anyway, I'm Laurence."
"Joanna."
We fist-bumped and he helped adjust my cane for my height. We walked outside together, and he stood at the curb to wait for his friend while I walked across the parking lot. I turned and waved. He waved back and kept looking at me. I realized it was to make sure I was safe.
I got to the sidewalk crosswalk and peered back. I saw him get into a green SUV. I realized I would probably never see him again.
I am definitely going to Pay It Forward.

***

Also! Links! For future reference!
http://www.neurodiversity.com/main.html
http://cerebralpalsy.org/about-cerebral-palsy/associative-conditions/
http://www.disabilityscoop.com/2013/10/03/autism-common-cerebral-palsy/18775/

***

Also!
PMS is vicious. Although with oral contraceptives, it's technically withdrawal bleeding rather than menstruation. Besides, I haven't truly bled in over a year. Being on the highest dose of birth control for over fourteen years will do that to some women.
PMS is vicious. A veliciraptor chewing through my pelvis. There's a photo out there of a plastic female human skeleton, with a toy raptor stuck head-first through the pelvic bone.
And the bloating and bizarre fluctuations on the bathroom scale.
Having slid back to psychiatric anorexia after failing to control neurochemical anorexia, I know damn well I should not stand on that scale especially during this time. I know damn well that numbers don't mean as much as how my clothing fits. But paranoia bred from life-long anxiety over disordered eating patterns is paranoia. And then there was the entire food=growth=death connection when I was little. And then there was being under a hundred pounds until my mid-twenties. And then there was the anorexia voices insisting that I needed to get back to that, being under five feet tall. I was never overweight. I used to weigh something around the high "set point" - but I have no idea where I've constructed this memory of being convinced to lose twenty pounds. Unfortunately, my illness has burrowed deep enough into my subconscious that my thoughts have turned to the classic hallmarks of anorexia: "I absolutely must be below X number or I will never feel right". The unwillingness to stop. The belief that everything is wrong. I know where I am. I know what's happening. I've been able to compartmentalize and separate enough so that I smack myself when those thoughts occur, so that I at least eat an apple or two, or cheese, yogurt, celery, even cheesecake or dark chocolate. My friends are with me.
Sag Harbor will happen next week, with Thanksgiving. Part of me is in a total blind mute panic. That part doesn't want to eat anything. That part wants to Be Good, Be Perfect. It doesn't matter that I'm over thirty, says the panic. It only matters that I am extremely small and I must keep being extremely small.
To bring everything around again: PMS is not helping. PMS is several numbers upward on the scale because of fluid retention, bloating... losing that fight to not overeat. PMS is barely fitting into the purple dyed jeans yesterday and having them slightly loose today. It isn't helping anything.

But I look at that blue and silver dragon scale cane, bought for me by a total stranger with the same disability as me, and I think the best way I can Pay It Forward is to make sure someone I care for stays as mentally healthy as possible...

Current Mood: weird

https://adiaryofamom.wordpress.com/2013/03/21/hate/

"In one of my favorite posts about identity-first language, Zoe at Illusion of Competence writes the following:

I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”

No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them or in front of them) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.

For the love of God, Katie had a COUGH – something temporary and fleeting. Something that will, God willing, be gone in a matter of DAYS. A cough – not the filter through which she tastes, sees, smells, hears, touches and perceives everything in her world. Yet because Brooke hated the cough, Katie’s entire identity became conflated with it. Driving with Katie, talking about how she felt, the implications of the moment rushed over me. And the weight of those implications was almost unbearable.

If we keep FIGHTING autism, HATING autism, FEARING autism, talking about the UTTER HAVOC that autism wreaks on us and our families, we will end up with a generation of children who have learned to hate themselves – or who, at the very least, hate things about themselves upon which they have no control or that, if they can control, they do at tremendous cost to their sense of well-being and self-esteem."

Current Mood: creative

I want Soren Bowie to be my friend.

http://www.cracked.com/video_19092_4-types-bullying-we-are-shockingly-ok-with.html

Current Mood: amused

http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html

Okay, so naturally I disagree with several of these. I use Idiot, Moron, Crazy, Stupid, Lame, Gimpy, Cripple. In fact!...
Via Facebook:
BTW, FYI: When I am stressed, worried, afraid, or panicked, I turn to satire, wryness, flippant humor, self-deprecation, and dark humor to soothe myself. It's not that bad right now, but if I discuss any health issues with blatant dark flippancy toward myself, it's just a way of being okay with stuff.
I'm sure plenty of folks do this. Sometimes it's all about sanity and security! I am such a lame cripple right now. Hah.
BUT: I won't use ableist words without a warning note that I personally am not offended by a few (specifically idiot, crazy, moron, lame, gimpy, cripple - I apply them only to myself). Since they are known offensive terms, and I know this, I'll make a point to not use them outside of me, myself. However, if anyone has issues with my potential use of those listed words specifically, please let me know.

See, I think lists of ableist words tend to go too far. But everyone has their own hairline triggers and I ain't stepping on those wires. But I won't step on eggshells. I will apply trigger warnings and disclaimers because I know very well. One of my favorite insults comes from Futurama: "Asinine Morons." It feels so good on the tongue. I just like the word Asinine. Maybe Moron could be replaced with Coward, Jerk, Pissant. I don't know. I really love finding words and terms that I could use instead of words that obviously refer to disabled people in an unflattering way. The thing is, with disabled people being among the most marginalized of the marginalized groups, it will take a long time to alter the vocabulary or lessen the ugliness of the words.
I still refuse to use "retard" because it reduces a person to slowed developmental growth above all else. And really, the only time I've heard "retarded/retardation" was with plants. And there should be other words.

On to other things: My migraine, which has been slowly creeping since last night, is being gently soothed by caffeine, B-Complex, Boswellia, Magnesium, Aspirin. The Ayurvedic pills - Bacopa, Ashwagandha, Shilait, Turmeric, Boswellia, Fenugreek - have been helping slowly but surely. And the stuff I picked up while grocery shopping are helping beautifully too. Yay symptom soothing!

Current Mood: quixotic

"...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.

Current Mood: weird

So, yeah, this one's for folks who might read this and think something is "wrong" with me:
I'm fine.
I am not depressed right now. I feel well. Please don't contact me thinking I'm falling into a state of, as someone eloquently put it, 'delusional levels of crazy". Seriously, let's get through this without someone messaging me just because I "don't sound right."
Something awful happened, someone died, and since that someone was extremely famous and extremely beloved and died in a specific way and had a specific illness shared by millions of other people, this will be talked about. In fact, this is talked about a lot; but it can take something big, like a celebrity death, to get it out and open.

This isn't even about Williams anymore, although for a long time he will be its centerpoint. This is about something that is still mocked, teased about, and shredded in rhetoric and literal disbelief. It must be easy to say "Just smile, just cheer up, it's not that bad, people love you." That's not how this works. Maybe it needs another name.

http://www.avclub.com/article/robin-williams-depression-and-very-real-struggle-s-208070
Quoting:
" "My mind played one thought over and over, which was “Kill yourself.” It was also accompanied by a constant, thrumming pain that I felt through my whole body. I describe the physical symptoms because it helps to understand that real depression isn’t just a “mood.” "
Quoting:
"It might not have been that simple for Williams, though. We may never know what kind of therapy he went through, though if his empathetic performance in Good Will Hunting is any indication, he must have at least known therapists in his life. He could have even been through everything and still felt like he had no choice. In the wake of his death Monday, a lot of Twitter eulogies noted that “if you’re sad, you should say something,” and while that’s probably true, for so many people who are depressed (one in 10 Americans), it’s not that easy. You’re constantly crippled with sadness, unwilling to burden those around you, or unable to ever pull yourself out of it, even with that help, even with that shoulder to cry on. Once someone gets so depressed that they really dig themselves into a hole, it’s nearly impossible to ever fully get out without real long-term work, and even then, they might still remain a little muddled, a little muted, kept under glass and without a real way out into the world."

That is powerful. This whole thing is heartbreaking. And you know what, yeah, I do want to keep talking about it.

Current Mood: relaxed

http://www.theguardian.com/science/brain-flapping/2014/aug/12/robin-williams-suicide-and-depression-are-not-selfish

And that's the last I want to say on this. Not because several people called me crazy for expressing deep thoughts, but because I'm out of words.
Actually, one more thing: I had assumed I'd feel upset at being called delusion level crazy for sharing my thoughts on the depressive suicide of a beloved actor and comedian to whom I looked up. I was wrong. I wasn't upset. I was puzzled and then exasperated. If someone doesn't understand even after explanations, I need to allow myself to end it and concentrate on my well being.
That's all many of us can do.

Posted via m.livejournal.com.

Well, then. That was the second time someone contacted me and said, "I read your blog and I'm worried because you sound so crazy. It's no big deal if some stranger died. It doesn't affect you. Why are you so sad?"
And I truly don't think that my answer of "It's my blog; I'm venting my thoughts. It's nothing you haven't seen before." was placating.
Like... um. Hi. Have you met me? I'm verbose. I'm also mentally ill. Between verbosity and illness, I love to ramble on about life, mind, the universe. To read something I write and automatically conclude that I am "high levels of crazy" is insulting. Thanks, readers. I love you too.
It's basically the same attitude as "Well, maybe Autism Speaks wants to eradicate autistic brains and never bothers to actually help with services for autistic people, but have they hurt you, personally? Why do you fight against them? They're probably doing good things."
It makes my brain hurt. So much. Mainly because ignorance up the ass.

No, I'm not making my journal friends-only. I'm happy to show, publicly, that I know what people think. And that I know how irritating they can be. And how very little they know about who I am. Sucks to be them.
But yeah, I talk about mental illness and how deeply that sort of thing affects me. I use words that might not appear "rational" or "worldly" or "down to earth."
I'm skeptical to a degree, but I'm about thisclose to moving away from the skeptic movement entirely. It's full of assholes.

Current Mood: aggravated

I'm crying over the death of Robin Williams this hard because people have already started in on the bullshit rhetoric that severe clinical depression isn't supposed to affect the rich and famous. That "If their life is so perfect, why are they so depressed and suicidal" bullshit.
No. Nope nope nope. No. That’s not how it works. Do not insult people like me who deal with clinical depression. No.
Most of his film roles featured depression and mental illness heavily. I'm seeing comments like "He did all those roles with a purpose because he knew what it was like, so how could he do this himself etc" and I cannot help but feel rage...

O Captain, My Captain.
He really was a man I looked up to, in several ways, and one of the greatest actors I've seen.

Look, I've lived with clinical major unipolar depression all my life. To my brain, it's a chemical imbalance - it affects an organ so vital to my existence that not treating it means irreparable damage. There have been plenty of arguments all over about what depression is and isn't: Disease? Disorder? Illness? Emotional Syndrome? People have questioned and fought against the very idea that it is a neurochemical imbalance. People have insisted that depression does not even exist outside of emotional states.
There are depressed patients who are able to live with this illness without medication or therapy, basically using mind over body and lifestyle techniques. That's fine. That's great for them. Sure. Unfortunately, most of those patients will try to push that lack of real medical treatment on other patients, which can be dangerous. And the state of mental health services in the country I live in is awful. All I know is that I when my symptoms rise up, I care for myself as best I can - and try to educate others as best I can.
Right now, I'm in a really really bad place. I'm not in a depressive state. But I'm irrationally upset, anxious beyond reason, physically hurting from emotional agony. That is not a joke, dear detractors of Robin Williams and his battles with clinical depression.

I promised myself I would get away from the internet until I could breathe without screaming and sobbing. But I've already been getting emails and messages from friends wanting advice, as though I might be their Boggle Owl in a way. I want to help. I need to help. I live to help.
I will stay away from forums and communities. Tomorrow, my husband takes me to physical therapy, and later I can unwind fully. But to everyone I love: You know where to find me. I'll still be your Bright Lotus (someone gave me that nickname and it stuck).

I took my own drug treatments. I'll be all right.

http://greensh.livejournal.com/444686.html
http://psychcentral.com/lib/what-is-depression-if-not-a-mental-illness/000896?all=1
http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html

Current Mood: sad

So, in my cerebral palsy support group on Facebook, someone posted asking about all the other conditions we all have that may and may not be related to cerebral palsy. I commented quickly in a very instinctual pattern, then realized that a part of my brain must have been saving it up in a fantastic pattern. I think this at least two dozen things.

Spastic and ataxic cerebral palsy... plus: epilepsy, autism, fibromyalgia, sciatica, asthma, hypersensitivity, sensory processing disorder, migraine disorder, anxiety, unipolar depression, chondromalacia patella, disorded spatial perception problems and depth perception problems, TMJ, lordosis, dyscalculia, OCD, ADHD-inattentive, anorexia recovery, light bladder leakage, seasonal allergies, sleep disorders, extreme myopia, chronic lumber back pain, eczema, panic attacks, generalized joint pain, generalized nerve pain.

They look like nothing but words. Words and labels. But they are identity bits. They are definition bits. I am not like people who are so adamant about not letting disabilities define them. Or take over their lives. Or whatever the latest platitude is. I know damn fucking well that chronic medical conditions are not the big thing in my life, not the main definition, not a thing I allow to control me. In fact, it is insulting to know that people assume that. However, look at that bunch of words. That bunch of words means things, to me and all my doctors and all my specialists and all my therapists and all my -path doctors. When I went in for physical therapy earlier this week, I listed every single thing because the guy asked me to, because neurology and psychiatry is interconnected with physiology in so many ways. People who are not involved with medical science or medicine in general love to assume I am lazy, that all I think about is being "sick" and that all I want to talk about is my medical health. I wish I were as telepathic and clairvoyant as they are. And also, fuck them. See, in cerebral palsy, spastic hypertonia alone can cause a disabled body to automatically, instinctively expend three to four times more energy than a regular normal able body. And see, in fibromyalgia, chronic muscle fatigue alone can cause a disabled body to automatically, instinctively expend five to six times more energy than a regular normal able body. I am terrible at math, but at least I can figure out the mechanics of physical energy output during basic everyday tasks, like walking. I could legitimately literally say that it is not my fault that I get extremely exhausted, fiercely fatigued very quickly during any task. I could say that and it would be absolute truth. But to most able-bodied folks, it would be another excuse.
I'm just writing this to tell them to fuck off. It isn't easy to "just ignore those idiots" as supportive folks like to say. Words wear you down, like storms against stone. But the more I remind myself that those detractors can fuck off, the better I feel about my life.

Current Mood: drained

Why is the human mind so complex? Why is the human brain so intricately complicated?
Neurology is a supernatural extremity, an unsolvable puzzle. We cannot comprehend. We stand forever on the edges of brilliant and wild things we will never quite touch. This is humanity. It burns. It is indescribable.
No. We can only wait and watch.

Posted via m.livejournal.com.

Current Mood: groggy

For those who have been messaging me asking to share my words along with the "I Will Not Keep Calm" meme, the answer is yes, you may share. In fact, to make it easier, I'll make everything shareable as one.
***

EXACTLY.

(I'm not going to back down when you tell me that autistics are cursed and suffering. I am not going to back down when you tell me that people like me must be experimented on just to see if we feel pain. I'm not going to back down when you tell me I don't have a right to speak up about my needs as an actual autistic, that your right as "someone who works with autistic peoples/a parent of autistic kids" means you know better about my brain than I do. I'm not going to back down when you blatantly announce that people like me should not exist, that our very selves should be eradicated just because you don't like how our brain works to the point where you will falsify data, lie socially, commit fraud, spread toxic propaganda, and act like you know better than me concerning my personal interests. I will not keep calm. I will not be nice. I will not tone done my anger. Until you are able to accept autism as a divergence and not a disease, I will not stop poking and aggravating and annoying you. I've had some really good teachers. I have a chosen brother who is a self-proclaimed asshole with a heart of gold, who has shown me what it is like to explode rhetoric properly, and I know how to choose a battle to fight using proper logic, reason, fact, and science. And there are many people behind me. Do you know how many autistic adults are out there? You don't. Because you don't care about the ones who can and will speak up and speak out. And I am going to help change that.)

(Addition: Because I have cerebral palsy, I will add that other disabilities, such as other neurodevelopmental disabilities, could be included. I, personally, am proud to have cerebral palsy as a part of me. Same with autism. If you want to remove my disabilities, you want to remove me. And I like me. )

Yeah, life. It does things as you get older.

"everyone can't be right
but everyone will decide

i'm not afraid of the price i pay
i won't lie down as you walk away"

Shh. I'm being sneaky!

Current Mood: determined

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March 2015

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The Return To Innocence

The Return To Yourself...

Entries tagged with humanity

I'm not you. You're not me. But we're people. Yay us.

My brain to your brain. To the universe.

Celebrating Bodies

Disability Day of Mourning

Why people are fascinating

I have so many names. We all do.

We're all different, and that's awesome

"No, GIR. That's bad."

I am the crippled dragon!

Accept me, accept it all

Humans are twatwaffles.

Words that mean things, always

Also, some words shine like stars.

It's real, and it's not leaving, so deal.

Because discrimination in so many ways

Much eye-rolling

When the water is too deep, when the darkness is absolute, and no one understands why you scream

Little ball of hiss

Testing

I Will Not Keep Calm, But I Will Carry On