brightlotusmoon: (Snow White Blood Red Light Pale)
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... )
brightlotusmoon: (Asha)
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.

Humans!

Feb. 8th, 2015 09:33 pm
brightlotusmoon: (Asha)
And yet and yet, people still say things like
"How can you be in a depression episode again? Isn't your medication and therapy supposed to be working?"
"So, what caused it? Did you get upset at a news story?"
"Are you sure it's depression? Maybe you're just sad."
"What did you do this time to cause it?"
"I thought that new medicine was supposed to make it all go away."
"You know, lots of people get depressed. I hear exercise and sunlight work best."
"Hey, you're laughing! I guess you feel fine now. You should laugh more to cure yourself."
And yet and yet, I still want to smack those people when they continue to just not get it.
brightlotusmoon: (Asha)

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."

brightlotusmoon: (Asha)
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...
brightlotusmoon: (Asha)
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!
brightlotusmoon: (Asha)
"...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.
brightlotusmoon: (Asha)
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.
brightlotusmoon: (Asha)
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!
brightlotusmoon: (Asha)
So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

I did a second gluten-free trial, lasting just under one month. I spoke to all three doctors and specialists, who were okay with it. Although I shall quote my primary physician, Dr Carolyn, who has treated me since 2003: "I don't see why it's really necessary, though. You've never had gluten sensitivity, let alone celiac. But if it will help you psychologically, then sure. Let me know." And to quote my neurologist, Dr Debbie: "Why are you doing this to convince other people? I mean, I'm genuinely amused. You don't need to cut out gluten for health reasons, anyway." All I could do was shrug and say, "I guess to prove a point to the health-pushers?" She said I had a point, since that was irritating, to be pushed at.

The results were...

Wait for it...

Nothing.
Absolutely nothing.
There was no reduction in chronic pain, fatigue, inflammation, or malaise symptoms of any kind. I did not feel more energized nor clear-headed. My life did not change, not even a flicker.

Now. For the past several weeks, I've been verbally assaulted across the board by people who just want me to feel better - by using blatant, callous emotional manipulation to force me to comply.
The most popular one so far has been "Well, what if you were dying? What if you found out that gluten would kill you and that by going gluten-free you could save your life?" See, okay, that is a fascinating thing right now. That is one of the most manipulative, passive-aggressive, hard-hitting, one-sided forms of coercion ever. The speaker is hoping to catch the listener in a corner, with no choice but to agree. And see, they're correct there. Obviously if I were in such a scenario, of course I would go gluten-free. But the catch is that I am not dying. I am not sick. Thus, no desire nor need to go gluten-free. Not unless that life or death scenario occurs!
Following up that particular attack, we then have this, "Well, then, don't you think going gluten-free would at least reduce symptoms and pain?" Which ties into the first, of course, and is subtle enough to seem harmless and reasonable. And... no. Because gluten causes problems if one is reacting to gluten. Which I wasn't. "But I read this book written by this doctor that said that for everybody, gluten can cause overall body inflammation and pain!" For everybody, really? All seven billion humans, with the exact same medical issue. One would assume the CDC, FDA, and various world governments would be all on top of that like roaches on dog food. Plus, I listened to a conversation said by this doctor, who is personally treating me, that said that I didn't need to restrict my diet like that. But you're right, book-writing doctors would know better.
Now, the big guns. This attack is my favorite, because it strikes right at the heart, it tries to destroy the option of choice: "So, I guess you'd prefer a life of pain over fewer symptoms." It can be said in multiple ways, but the core is always a smug, smarmy, morally superior, I've got you now rhetoric. It's a tough one to counter. If you say yes, you seem as though you just don't ever want to really help yourself after all. If you say no, well, why haven't you taken their advice? You see the attempt at emotional superiority and twisted logic? At this point, you can tell they are grasping at straws. They've seized on an idea, fixated, and found themselves unable to let go. I get that. And they most like don't even realize that what they say to you is painful or upsetting. They only want to help. They care deeply enough. Obviously, when you love someone, you want to see them happy, healthful, pain-free. When they are in chronic pain, when they hurt every day, you hunt frantically for ideas about treatments. Even when they have doctors and treatments, you just want to do something, anything, because you can't stand to just stand by. They're hurting. Why can't you help? You feel helpless.
But emotional manipulation and verbal attack is a very ugly way to go about helping. They are more likely to stop talking to you. In fact, with most of these people, I've started not talking about my symptoms. Which is funny, because these are my support networks. These are support groups, people who are willing to help. Except for the ones who don't know how to help, the ones who don't have chronic illnesses like mine, who can only see the experiences vicariously. Intellectually, they may understand that it is inappropriate to push, but it feels so right emotionally that they can't help it. And I've been there. I've done that.
The problem here is that if people actually cared about your pain, your chronic illness, they wouldn't apply these manipulations; they are generally more concerned with winning you over and being right. Nobody truly means to be an asshole in a situation like this.
However, in the end, that gut-sensation of being right, of knowing what might work, is overwhelming and almost brainwashing. It's almost cult-ish. I'll call then health preachers. This isn't about just gluten-free. This is about every dietary alteration ever suggested. This is about every medical treatment involving home treatments like food and exercise, meditation and yoga, supplements and massage, etcetera. I haven't even gotten to pharmacological medicine and holistic medicine yet. Or the people who deny psychiatric illnesses, who think psychiatry is fraudulent, who believe firmly that clinical depression isn't real and is literally psychological, delusional. Frustrating, isn't it.

So, anyway. My Plan. I went gluten-free for just under a month. I kept notes. I was alone, because Adam was away on business, so I just cooked for myself and didn't touch anything with gluten. I was hungry and bored. I mean, the food was delicious. There was a lot of quinoa and lentils and sprouts and cheese and meats and snow peas and carrots and apples. I ate a lot of steak. But I just felt annoyed.
My doctors were extremely amused and not at all surprised when I told them the results.
Seriously. Three separate doctors. All saying the same thing. I mean, at this point, if I were to tell Dr Carolyn to refer me to a blood test just for the hell of it, she would quirk an eyebrow at me and ask who was giving me the money for the test (I don't know if Medicare covers those), and we would laugh.
But I didn't tell anyone I knew. Not for the whole duration. Here and there, I casually mentioned that I'd done gluten-free trials without any changes, I casually mentioned that I didn't need to cut out gluten and that there were plenty of other ways I was already mitigating symptoms. I stopped updating my support groups. I just said that I was doing well on my medications and therapies, and when the weather got bad I would flare up terribly and kept treating myself. I mean, even if all my symptoms vanished, I would still not be rid of pain, because of the cerebral palsy. Which 1. is never going away and 2. is getting worse as I age, which cannot be stopped or relieved. Which people rarely realize, because nobody thinks about the crip adults.
So, yay, you, my LJ friends, get to hear it first. I went gluten-free and it didn't do shit for me! Yaay, that was pointless! Let's dance!
It was fascinating. During my trial, I was reading entries on my friends list about people cutting out gluten and realizing that their lives were changing for the better, that they were celiac after all, or intolerant, and that going gluten-free made all the difference and they could love food again, woooo! I was so happy for them I almost cried. It was amazing, reading about their joy and euphoria and ecstasy. Food, they cried! Food is wonderful again! And I nodded, and grinned, and focused on myself and how my gluten-free test trial was just like any other day, except boring.
And I put up with preachers, and pushers, and well-meaning manipulations. And I said nothing. It did hurt, being attacked like that. I sobbed and snarled and surrounded myself with friends who knew the powerful irritation of being shoved around by gluten-free pushers. I kept going. I took double the Klonopin. Days and weeks passed. I stopped the trial. I ate grains and wheat again, slowly, lovingly, with savor.

Today, I was recommended a wonderful book called "The Gentle Art Of Verbal Self-Defense" by Suzanne Haden Elgin. I've gotten a sample of a few chapters, and I'm so hooked that I'll be purchasing the updated version as soon as I have money to buy it. I'm lucky that I've been able to recognize Verbal Attack Patterns recently, but the book will teach me to escape as well as use communication to resolve. I need that. I need to learn peaceful communication getting to the root of the problem without hostile interaction and confrontation, without arguing over semantics. I like to hyperbolize. In fact, a handful of friends and I like to snark at, hyperbolize, and satirize the beliefs of health preachers, like those who firmly believe that gluten-free diets could help everyone who doesn't need them, the way that accepting Jesus will get people to Heaven so the preachers can see them after death and hang out with them in a conforming afterlife. See why this may not work? See why this can be more about the preachers than the listeners?
It is nearly impossible to fight a very calm, gentle person. I need to learn that art of fighting with calm. I need to learn to not be enraged and screamingly upset and insulted whenever anyone tries to manipulate my emotions. I need to learn to break my own cycle of verbal hostility, which will help me handle those manipulations disguised as helpfulness.

Other thing I loathe: Being told that having a mild version of a disability doesn't count. I already discussed cerebral palsy and aging with the chronic pain caused by spastic hypertonia. And they don't back off. No matter how many times you patiently explain anything. Now that is where I really, really need to learn gentle verbal self-defense tactics. Because oh my fucking gods I want to punch them full of holes.

Ahh, humanity. Fun!
brightlotusmoon: (Asha)
This is especially for[livejournal.com profile] naamah_darling because it talks about how powerful and precious internet communication is especially for disabled people.

http://palsycorn.livejournal.com/2269.html

She is one of my dearest friends. We met on a Facebook support group for people with cerebral palsy. She is the creator and head moderator and she is amazing. She is studying Disabilities Studies in college, she adores SF/F and is writing several stories and at least one SF novel with disabled superheroes, and she is the reason I am so down with being a crip, cripple, "ceep", etc. I love her.

Quote:

"I am a multiply disabled person. Phone calls require a type of mental, physical, and emotional gymnastics for me, which I seldom, if ever, have the spoons for. I have severe phone anxiety which I smash down and stuff deep inside me when I absolutely have to make a phone call. The anxiety is managed somewhat with the help of scripts (particularly helpful if I have to call to make an appointment or something, I write down exactly what I'm going to say, and approximate what the other person is going to say), and has gotten slightly better since the advent of cell phones (that way, I know that no one other than the person I want to talk to will pick up). But it is still VERY there. On top of this, I have to smash a phone against my ear and fight not to drop it, something which I do with alarming frequency, because my hands do spazzy things. This phone, which is usually supremely uncomfortable, because no one considers how it's going to feel when it's held against an ear when they make a cell phone, will have to be nearly glued to my ear for however long the call takes, requiring my arm to be held in an awkward position for that long, which, like most things I do with my body these days, will result in pain. Finally, phone calls require communicating verbally, and like many people with CP, I find it exhausting to coordinate the muscles needed for speech and still make my words clear enough to be understood. Put that all together and you start to see why I feel like I've ran a marathon after a long phone call."

YUP.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
http://www.smbc-comics.com/?id=3267

...well, this hit me like a rock to the head. Beautiful and profound. I applaud and I also agree. And this, right here, THIS, THIS is why I don't agree with so many so-called self-help happiness programs. Someone else's source of happiness can never be mine. Ideas are always lovely, word of mouth is a great idea, teaching personal knowledge of happiness is wonderful. But nobody, ever, can tell me how I can find my happiness.
THIS EXPLAINS IT.
BRB, having a moment.

The comic )

You know what it makes me think of? The ugly smugness of those particular people who think that if they just avoid negativity, don't get angry, and insist that we stop "being so angry" and how they seem emotionally superior, a sort of moral superiority, but so insidious. Because it's like the difference between having had a rock in one's head with the rock being dislodged and not having had a rock in one's head at all. If you don't understand someone else's different perspective, there is no fucking way you could truly understand where and why they are feeling how they feel.
It's the way Zach wrote about the difference that the students could not feel, since they never had the teacher's experience. And the teacher couldn't teach the teacher's experience because it was in fact unknown and unrealized. And so the teachings were in fact merely the teacher's perceived feelings and ideas. Which is very nice, but... it's more empty than fulfilling.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
My darling Cara Liebowitz wrote a lovely post that I had to share:
*
"I was going to bed, I swear, but The Brooke Ellison Story is on TV. Gotta say, as cheesy and inspo-porny as it is, I love it. And on some level, I AM inspired by Brooke Ellison, mostly by her sheer determination and drive to not only succeed, but excel, not only in the face of such a life changing injury, but in the face of everyone who told her she couldn't do anything.

I don't know, I feel like maybe its different for someone with an acquired disability. For us congenital folks or those who acquired their disabilities very early on, we just go along living life the way we know how. We've never known any other way. But for folks with an acquired impairment later in life, especially one as severe as Brooke Ellison's, it requires such a radical restructuring of your life and worldviews. I am inspired by those who push through and come out the other side. I'm not so sure that's wrong.

Thoughts?"
*

I shared this because it is exactly how I feel regarding being a congenital and seeing an acquired do something dubbed "So Inspirational TM!". In the disabled community, most of us have a very strong opposition to "inspiration porn" - (the most well-known example, perhaps, being that Scott Hamilton quote and poster of Hamilton and a child both with those expensive prosthetic legs, saying 'The only disability in life is a bad" attitude" and any photo of someone in a wheelchair or crutches with a quote of "If they can do it so can you" or "What's your excuse" Fuck I hate those phrases so fucking much fuck fucking fuck - But every so often something comes along that falls into a category) that is only mildly inspo-porny and actually uplifting, even though nothing inspirational actually happens that we can see.
Like the quoted story, about a woman who becomes paralyzed and gets into a top-rate university after overcoming many challenges. Now, to people like me and Cara, with our cerebral palsy, it's like, So? That's it? What else happened? What made her so incredibly inspirational that it required a sappy movie? Why isn't there a movie about my life? I was born three months early in the late 1970s, nobody really cared about my cerebral palsy because it was mild, nobody thought I was autistic because it was the 1980s when autism was barely being looked into, I in fact had no idea of any of my invisible illnesses until I was in my late 20s... You get the idea.
Now, I have extreme respect for anyone who must go through a radical reconstruction of their identity when something like an acquired disability happens, because fucking fuck that is shattering and destructive and requires a particular rearranging of so many parts of their lives and their thinking.
There are some acquired folk who get snotty about it and either insist that everyone must "fight for a cure!" or throw themselves a public pity party and beg everyone to "find a cure!" which I can't really sympathize with.
Then again, I'm the type of cripple who embraces my cripplehood... because I have never known anything else. That may, in fact, make me seem snotty, snobby, snooty, etc.
But having a disability that permanently impairs daily life, whether congenital, acquired in very early childhood, or acquired later than childhood, changes your mindset, outlook, and indeed your soul, in ways that nobody can predict. And sometimes, you literally have to just roll with it. Limp with it. You know.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

And then... then, I got asked to weigh in on a discussion about how "our organic bodies must learn to heal themselves without medicine blah blah blah" and I was too tired to give a smackdown, so I just warned that HOLY NAKED CATS CHRONIC ILLNESS AND DISABILITY DOESN'T WORK LIKE THAT YOU ETERNALLY FLOATING-HEAD HIPPIE WANNABE. Never tell someone who needs certain medications to function to just quit those medications, or you will have to deal with some very, very irritated cripples.
Like, HI, this drug here, synthetically derived from that plant over there, is saving my life, and fuck you. Yes, yes, the medical community likes to "push" drugs and all, but sometimes those drugs keep people alive, so seriously shut your rainbow-dribbling mouth.
I have spent over a decade writing essays and blog posts about this, starting from that floating head holistic hippie phase of Only Supplements and Essential Oils and Meditation, to Okay This Requires a Chemical Drug So I Don't Die But Can I Still Take The Supplements to Goddammit I'm Just Going To Balance Holistics, Botanicals, and Pharmaceuticals forever.
And the next person to use the words "poison" and "Harmacy" in conversation with me will be threatened with getting hidden completely if not blocked from my forum feeds. Because I really am a serious holistic and scientific advocate for various healing plants and botanicals. I am a shaman in training. But chemicals come from various places. And sometimes, the chemicals extracted by scientists have a better effect than the pure volatile chemicals.
You think side effects from FDA drugs are bad? Eat a whole plant and spend a few hours writhing in hallucinatory agony. And GUESS WHAT: some people never even get bad side effects. Trileptal. Zoloft. Baclofen. Soma. Tramadol. Codeine. Klonopin. Guess what? I'M NOT A FUCKING ZOMBIE. Guess what else? I AM BETTER THAN I HAVE BEEN. So you know what? Float on. The cloud are gorgeous up there.
But my body cannot organically heal itself, sorry. If you're on of those people who like to say, "I'm not against pharmaceutical drugs at all, but have you ever considered just letting your body work on itself naturally?" You will be met with raucous laughter that would make the Joker question my sanity.
I have been dealing with this since my early twenties. I'm gone through the ENTIRE gamut of medicines after being raised literally on vitamins and homeopathy and various therapies and acupuncture. I will not claim to be an expert. But I've had life experience.
So hey, if you're going to cheerfully toss out a casual, callous thought about how someone shouldn't take a pill anymore and see what happens, you really don't know. You don't know. And this is why I try to go out there and help educate, advocate and activist. Because if I don't, people will remain head-floating.
I was once head-floating, and it was a good high while it lasted. This is why many of my friends are scientists, medical doctors, medical students, researchers, etc. I ask a lot of questions. Because I never want to be that head-floaty again.

Anyway. I applied a cream with special oils to my chakra points on my feet, palms, and ears, and my forehead. I took my "harmaceutical" drugs. I stretched. I did acupressure. I meditated. I did my personal compensated form of qigong (of which yoga is only a small part, so don't bother), I recited various phrases to relax myself and let my darker emotions drain away.

In conclusion: If I specifically as for opinions about something incredibly specific, I ask that people stick to that topic. Unlike my friend's post, which was derailed by a hippie wannabe who happily invalidated everyone by insisting that all we need is our own organic body to be healed. Sorry, friend. I hope that drug is going to work well for you! I've never tried it, as I haven't needed it. But I'm happy to help with research.

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
This is one of the most wonderful articles ever.
http://disruptingdinnerparties.com/2013/09/26/modeling-consent/
"Rape culture tells me that men always want to just “get the sex”, so naturally, I was shocked that he chose to risk “getting the sex” by verbally checking in. “Checking in” is a part of consent culture that is very easy to dismiss. It’s easy to tell yourself, “Oh, I already asked about that. They said they were ok” despite picking up on body language or other signs that would tell otherwise."
-Stuff I Did Not Know About
And:
"Consent culture doesn’t have to be limited to sexually charged situations. Pretty much any situation where you are interacting with people is an opportunity to check whether the other person is OK with what you are doing. Eg: “Would you like to walk there together or did you want some alone time?” “I’d like to talk about this with you. Is now a good time?” “This conversation is getting pretty intense. Are you OK with continuing on this topic or would you rather talk about something else?” I think it’s really useful to do this kind of negotiation in any kind of interaction, sexual or otherwise so that everyone feels like it’s OK to express their boundaries. Partly because it makes those interactions more safe and enjoyable for everyone in themselves and also because it feels more natural to continue in that way if things do become sexual later."
-Stuff I Want Happening Right Now (so that people can ask me if I want to be left alone when I want to be left alone)
And:
"I appreciate consent to the point that I often take a “protector” role at parties as I maintain more of my sensibilities while inebriated than many of the people I know. That being said, if two people can read each other without words, there is NOTHING wrong with exchanging a kiss without asking for it. If one person can’t read the other accurately, there is an issue with either the kisser’s perception, the kissee’s sending of signals, or some combination of the two. There shouldn’t have to be a textbook for organic, natural encounters. While everyone is entitled to their private space and shouldn’t be taken advantage of, if someone is wearing an alluring outfit at a dance club that advertises how sexy it’s customers are, that probably isn’t the kind of place to not have an awkward lean-in after some dancing (which is often close and arousing anyway). Signals are just as important as perception, and basic, decent, human respect is the most important thing of all, with communication, verbal and otherwise, at a very close second."
-Stuff I Hope Everybody Understands Fully And Respectfully (meaning that if you cannot read a signal, inquire before moving forward)

And I feel horrified that I did not realize there was an actual consent culture, because rape culture has been so prevalent...
brightlotusmoon: (Snow White Blood Red Warrior)
http://www.upworthy.com/best-explanation-of-religion-i-have-ever-heard-and-im-practically-an-atheist

Dear every religious person: Listen to this. This guy is a bishop, and he's better at explaining organized religion as separate from the godhead than almost anyone I have ever heard. Dear every nonreligious person: You will be nodding vigorously and appreciating people like this man so much you'll wish every religious person was like him.

This is why I'm pagan. This is why I have no religion. The godhead - a single god, many gods, a source of energy, the higher self, nature, the universe, however you want to identify with it - has nothing to do with praise, fear, love, hate, organization, community, or what each person does in life. It just exists. It hangs around in its own dimension, formless, genderless, minding its own business, occasionally feeding off the soma of belief from living beings who find it pretty and comforting. It lets those beings shape it into whatever form they can recognize most. And since it is so pretty and comforting, people look to it and embrace it. If it makes them feel good, hooray! But to invent controlling concepts like Heaven and Hell just to scare people into running like children to your arms - born again, as it were, as this man says - is not a good way to explain your belief systems.
I'll say it again, but I believe Neil Gaiman did it best with "American Gods" - the idea that all gods are a sort of Mobius strip, circling back to creating themselves out of the minds of humans until they become real incarnations and sustain themselves on human worship... Except I like to think they originate in dimensions both outside our worlds and within our minds. Not quite panentheism... more like the universe being our own selves.
See? I'm so eclectic I don't want anyone else to "convert" to my belief system. I don't even know how to explain it. This is what happens when I'm raised by an atheist and agnostic both with very open minds.
brightlotusmoon: (Snow White Blood Red Light Pale)
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.
brightlotusmoon: (Snow White Blood Red Light Pale)
Originally posted by [livejournal.com profile] naamah_darling at The First Bride
Theodora Goss on the true lesson of Bluebeard, and living as a woman.

When I teach my class on fairy tales, I ask students about the moral of “Bluebeard.” Charles Perrault gives us a moral, clearly marked “moral,” at the end of the tale: “Curiosity, in spite of its appeal, often leads to deep regret. To the displeasure of many a maiden, its enjoyment is short lived. Once satisfied, it ceases to exist, and always costs dearly.” I ask my students, is that really what we learned from the story?

No, they tell me. That moral doesn’t make sense. If Bluebeard’s wife hadn’t been curious, she would never have known that he had killed his previous wives. And although he tells her that he’s going to kill her because of her curiosity, and we can infer that he killed most of his other wives for the same reason, what about the first wife? Why did he kill her? Clearly this is a man who simply likes killing his wives, and will eventually think of a reason to kill again. So, I ask them, what is the moral? And eventually we come up with something like this:

“Make sure you know whom you’re marrying, because your husband may be a serial killer.”


There's an impulse there to laugh – I did – as though this were the punchline to a joke, but it's a joke that's funny only because it is black. Because this happens every day, and it is a truth we recognize all too well.

You cannot tell if a man is dangerous by looking at him. You have to look in every room there is. Sometimes, you still miss it.

Sometimes, it's just too soon. Sometimes it's not possible for us to see the danger. We are pushed into it too young, before we've learned the necessary skills to defend ourselves. We never knew safety, and so we cannot recognize danger. We leave one abusive environment for another, without spending time in between learning all those ordinary human things that we should have been taught but never were. We are driven to it by desperation, because we lack the means to take care of ourselves. There are many reasons.

Many times, maybe most times, they just hide it very, very well.

In neither case can women – should women – be blamed for the outcome.

The problem is not that the young bride in the story is too curious, it's that her husband is a murderer. At the very best, if we make a bargain with this sort of man, we lose parts of ourselves. They take it, or we have to cut it off to get away. At worst, we lose our lives – whether that's years stolen, or actual death.

Fairy tales are teaching stories. Without the neat little morals imposed on them by those who cleaned them up and recorded them, they tell a different tale. It is often a warning with just one paw sticking out. Truth concealed in something as harmless as a made-up story so that those who would prevent that truth from being spoken cannot silence it.

The moral of Bluebeard is found in that one key that seems ordinary until it is used to reveal the truth. The key that cries the alarm that is also a warning. The key that bleeds, the guilt that is not ours but is ours to bear. Our fault, somehow, for dragging into the light what should never have been done to us. What has been seen has been seen. What is known is known. That is the stain we cannot wash away.

We are told not to turn that little key; but if we are to survive, we must. No matter what the moral says, the torments visited on those lost women in the hidden room leave us with no doubt that we would have joined them, no matter how obedient. It is not idle curiosity that leads to the click of the lock and the creaking door. It is doubt, it is the deep-seated desire for self-preservation. It is that shred of mistrust that is sometimes all that warns us, even when nothing else may, that we are in the presence of a thing that would make of us either a slave or a corpse.

Women must be allowed not to ignore that warning.

We must not be punished, or even criticized, for asking the questions and opening the doors that might save us.

People (mostly men) tell women that we should trust, because to do otherwise is impolite. To insist on looking in every single chamber is rude, they say. We should believe them, they say. Give them the benefit of the doubt, they say. Most of us are not like that, they say.

But what about those women in that chamber? What about the cut throats, the guts kicked into the corner, the long bones stripped and ribs empty as birdcages, the skin piled up like rags? What about the warning they present?

Do we ignore them, or do we believe them?

Men tell women not to be rude, that they do not deserve mistrust, when women fear that they will be raped, beaten, worse. The worst that happens to a man, if a woman is wrong, is a bruised ego. The worst that happens to a woman. . . .

There is no woman equivalent of H. H. Holmes, of Ed Gein, of Jack the Ripper. Maybe, sometimes, we smother, we poison, we find other ways. We can be brutal and we can be cruel. But we do not eat them. We do not wear them. We do not drug, rape, and dismember them. There simply is no comparison to be made, none at all.

When we act to protect ourselves by erring on the side of "no," we are supposedly being cruel to those who desire our company. But if we do not, if we fail to protect ourselves by even the slightest margin, we are blamed for what happens to us. Not every person judges women like that, but enough do that justice for rape is a thing that I have never actually seen.

I do not believe that this violence toward women is an innate part of men that will always exist. I believe there are other explanations for why men do these things at rates that women do not. So I do not believe that we should mistrust all men.

I do believe that when we do, we must be allowed that without question. Fear is a useful thing. Fear wants to protect us, teach us. The person who is not at risk doesn't get to define when fear is called for or not called for, when it is fair and unfair. "Don't be afraid, I won't hurt you" is something a hell of a lot of helpless people hear, right before something very painful happens.

We get to decide when we should be afraid, to the extent that we are taught to do so. That teaching has not always been so open, and it does not always need to be so explicit. Fairy tales are a way that women used and still use of passing wisdom to the next generation. At their weakest, they entertain. At their strongest, they lay a foundation for survival so basic we do not see or feel it working.

It is no coincidence that the fairy-tale revival is largely being led by authors and readers who are also women, re-interpreting these stories for a new generation, while many authors and readers who are men look on and sneer. Children's stories. Told by women. Effortless, harmless, pointless.

As though their birth was bloodless, and no woman's hand ever touched them when they were sleeping, helpless. As though it is not our mothers who have power over us first and most irrevocably.

As a group, it seems to me that women never lost respect for fairy tales. Women as a group never forgot what fairy tales are for.

So what about Bluebeard's first wife? Why did he kill her? What was her transgression?

We need to stop asking. We need to stop asking why women wind up in those rooms, because no woman deserves to be there.

No woman.

And – I will not footnote this – we must not discount or forget those women whose bodies were labeled "male," and who face higher odds of abuse and murder than women who have always been allowed to live as women. Many of them lie in many bloody chambers, for no crime other than answering a question with a truth. No woman belongs there.

There are many questions the world will ask of you if you are a woman, and most of them boil down to this:

To whom do you belong?

But there is one question women must be allowed to ask of and answer for themselves:

Who do I trust?

For women, the very first answer to the two is and must be always the same:

Ourselves. Ever after.

Permission to quote, or link back here, granted.

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brightlotusmoon: (Snow White Blood Red Dragon Witch)
You know... between strangers still insisting that they know better than me and my doctors about my medications and disorders and this new bizarre, creepy, fucked up conspiracy theory about actress Angelina Jolie, I think I need to put up all my psychic shields whenever I am on Facebook.

(Quick note: I once met Ms. Jolie with Mr. Pitt, very very briefly, in Washington DC, last year. I never told anyone, because who cares? She's just a person. Angelina was very beautiful, very sweet, very kind. Brad was compassionate and funny. And now, I am reading about conspiracy theories regarding her "glorifying expensive self-mutilation through the guise of pretending she wants to avoid getting cancer" and because her doctors scammed her with the "lie" that she was at high risk. And because she has the money to afford a double mastectomy and ovary removal, and because she has gone public after the first surgery, she obviously wants to spread her horrible ideas to poor mortal women who have those genes that might cause cancer in their futures, because she was lied to by this pharmaceutical company and thinks it will help women.
This conspiracy theory is so sickening that I cannot even talk to the friends who believe it. They believe it so deeply that nothing will change their minds, the same way they believe that all vaccines cause diseases and autism. I love these friends. I can still be friends with them. But I cannot speak to them about any of this. They make me want to cry and retch.)

In the meantime, the carisoprodol (Soma) and acetaminophen-codeine #3 have been working very, very well, making me highly relieved. Of course, since pharmaceuticals are poison according to some people, I am obviously destroying myself from the inside. But at least I feel better.
And then there are the supplements that are supposed to be quackery, false, hocus pocus. MSM, Hyaluronic Acid, Biotin, Devil's Claw, Alpha Lipoic Acid, Pau D'Arco, Chlorella, Shilajit, AShwagandha, Goji Berry. They are also making me feel better.

I'm so sorry to harp on all this again. But I cannot walk away from these verbal assaults. I keep trying. I just want people to leave me to my own health knowledge. I am leaving them to theirs.

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brightlotusmoon

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