The Return To Innocence

Quote from a friend that applies to me in a scary way:

"If you really feel like picking a fight with me, you will have to wait until tomorrow afternoon. I'll need at least two good meals, some meditation, a comedy film, a squeezable exercise toy in one hand, and a muscle relaxant drug that will help me type properly without muscle pains and tensions.
This is why I like arguing online: We each get our points across without interrupting shouts, we can research and cite our sources properly, we can explain exactly why the other person's argument is fallible, we can defend our own position logically and rationally, we can actually get words in edgewise without stammering and snarling from both sides, and we can save our vocal chords from getting sore.
I hate debating in person. My opponent loves to tell me exactly what is wrong with me in ways that don't even make sense, and he or she refuses to let me explain why that argument has no basis in reality.
Let's say, for example, that he or she decides to pick on the fact that I have a terrible memory in general but I can easily quote my favorite books and movies. Do you know why I can easily quote my favorite books and movies? Because they are my favorite books and movies. It has absolutely nothing to do with having a poor memory overall. It just means that I've read certain books and watched certain films often enough to at least paraphrase, if not fully recite, entire lines of dialogue. See, people with brain issues such as autism spectrum disorders are able to do things like that. Having a disintegrating memory while being able to recall very specific things does not mean that I am pretending to have a selective memory, and frankly I feel insulted when it is implied and inferred.
I am chronologically young and neurologically aging. I also have many friends going through the exact same process. I talk about my experiences often, so people like me can know that they are not alone.
If you want to fight me about that, if you want to accuse me of deliberately living inside my brain disorders, please come inside my brain disorders. They're all connected, so it's like a fantastic patchwork house. My brain has a very comfortable couch. Would you like some tea? I just got some red tea. I have decorated it with my disorders proudly. They are part of me, after all. They are part of who I am. Aren't they beautiful? Like shiny, sparkly, broken puzzles. I may never find the missing pieces. That's fine, though.
Did you know that in Japan, when a ceramic sculpture is broken, they weave gold through the piece when putting it back together? Kintsugi: the Japanese art of repairing broken pottery with gold. The idea behind it is that the piece becomes more beautiful and valuable because it has been broken and has a history. I am full of gold-filled cracks. I am very proud of that. I am proud of my disabled and handicapped history. My life is made of gold!
Oh, please don't look upset! No, no, please, sit comfortably. I hope the tea is to your liking. Yes, even that mug has gold fillings, Even the couch is sewn with gold. This entire place is filled in with gold. And it is lovely.
Wait! Did you mean that I use my disabilities like crutches to make excuses for being in pain? That's ridiculous. I mean, I certainly don't mind magical thinking, but you can't make something that extreme happen just by imagining it. I'm not imagining it. I'm living in the right now. And, like many disabled people, my right now means having a body and a brain that feel more injured and aged than normal. I talk about this so that others like me understand, so they have answers to questions they are too worried to ask. Sometimes when you approach age thirty it can feel like age sixty, for some of us. That is why I am an activist for certain disabilities and an advocate for certain health treatments.
Oh! Oh, my! Is that also why you're angry at me? Do you believe that I use my medical problems as an excuse to do nothing while I am young? That is the silliest and most untrue thing anyone has ever assumed. Perhaps you should talk to some of my disabled activist friends. They will tell you the same thing. Life is hard for everybody. But it is sometimes a little bit harder for disabled people. We're not special snowflakes. Although snow and cold do sometimes make us hurt more!
Have some more tea. It's very calming. We need to be calm for this fight.
Just let me know when you are ready to fight. I need to do some meditative qi gong exercises to prepare. Just please keep in mind that I would rather we each complete a piece of debate without yelling over each other. It is much more difficult to weave healing gold threads through words."
-Written By A Disabled Gentleman Who Shall Remain Anonymous, And Who Reflects My Exact Thoughts, Feelings, and Personal Beliefs With Incredibly Frightening Accuracy To The Point Where I Could Have Written Most Of This In Various Bits. Not Kidding, I Think This Guy Shares My Writerbrain.

Anyway, speaking of the art of using gold to heal broken things!
http://www.pinterest.com/uberECOcool/kintsugi-saving-broken-ceramics-with-gold/

So, as my Facebook friends have learned, I am dealing with a literal "nervous loss of appetite" - literal in that my biochemistry and brain chemistry is so fucked up that my hormones and neurotransmitters don't remember what actual hunger and appetite feel like (hunger and appetite are not the same, also).

See, when I had anorexia nervosa as a disease, it was always, "I don't want to eat"- and "I don't want to be fat" was an afterthought. The same thing is happening. Now the afterthought is "Well, I wouldn't mind losing ten pounds, it couldn't hurt, right?" And oh, dear ones, that is not a good thing.

So, the goal now is to teach my brain and my body to accept solid foods in the mornings, without my brain screaming about how weird it feels and without my stomach wanting to make it go away. And here is the thing: I have not lost much weight. According to my special scale, I lost maybe two to three pounds and my body fat percentage dipped a couple of numbers. Not a big deal, right? Right? Ha ha, silly, nope.
My doctors have been informed. They have been guiding me, nutritionally. I have several friends who are actively studying nutritional science and they have been guiding me.
If I can eat only half the sandwich, I will eat only half the sandwich, and I will save the other half for a couple of hours later. In the mornings, instead of taking my medications with coffee with cream and milk, I will actively make cereal, oatmeal, a nut butter/fruit preserve sandwich, eat as much as I can, and then take my pills. Yogurt is not really considered solid food, although my brain totally thinks it is. My body adores dairy and doesn't give a fuck what anyone thinks. Cheese, whole milk, full fat yogurt, bring it on. Also fruit. My fruit cravings have been wild. Now, I've been told to watch out for sugar, because "it is possible that all those cravings are for the sugar in the foods and not the actual foods" - on which I quickly called bullshit. My sweet tooth hasn't been very active. Certain fruits and naturally sugary foods taste much too sweet. I can barely handle ice cream these days, filling as it is - although frozen yogurt with fruit is tolerable. Of course, there is a chance they are right - everything is possible, probable, and plausible. But at this point, I just need to eat something. And if there is a slice of cheesecake available, I will take a few bites just to start the whole "hey, time to wake up the digestive process" thing.

So, I welcome anecdotes and experiences and even suggestions. But I don't wanna be policed, if you know what I mean. Like if a morbidly obese celebrity or a very very skinny celebrity gets targeted by a gossip community and everyone says, "Well, I'm just *concerned about her health*" and then nobody produces their medical degrees or doctorates, is what I'm saying.

I love food. I am sad. I want food in my belly and I don't want my body hormones and brain chemicals getting in the way. And above all I don't wanna start thinking that I'm going to be fat, because that means The Worm will come back, and The Worm is evil and will rip open all those scars like paper.

So, I love you guys, and if you want to say anything, go for it. Just try not to be The Health Police. I mean, unless you actually have a degree in science, medicine, health, nutrition, etc. - or you are at least studying
that sort of thing. If so, by all means, instruct me! <3

Well, I have been wearing the back brace for hours, I have practiced varied stretches and exercises, I have taken Ultram and Soma... and of course I hurt. I always hurt. I have accepted this so easily. Because it will not change. No matter what anyone tells me.

I do not want to hear people telling me I am or will be normal. Normal is not in my life. Not anyone else's normal. I am a disabled person - excuse me, a 'person with disabilities' (sigh) and I have chronic illness, and chronic pain, and that is that. I treat it. I remedy it. The word 'cure' is far far away from my related vocabulary. If you know me, please leave it be, unless you have discovered something so absolutely powerful and new and wonderful that I absolutely desperately must try it.

Thirty-three years as of April. I have never been normal or okay or cured. And I have never wanted to be normal or okay or cured. I only want to be who I am. I am Joanna, who is a writer, a very short woman, a disabled person with at least two dozen disabilities and illnesses, a person who loves cats, a polytheist polyagnostic pantheistic eclectic pagan who talks to nature like a friend.

Some disabled people advocate for not allowing disabilities to 'define' them or 'be part of them' - and I have realized that my disabilities and illnesses are such an intense part of what affects my life that they may as well define at least part of me. I am a person. And I am disabled. I am a disabled person. And you know what?

At least for now I do not want to put my personhood before my disability status because I am exhausted by so much screaming social justice in every nook, cranny, and corner. We cannot say this, we must say that. Oh, we would offend those people whom we are not part of. There are allies, there are advocates, and then there are those of us who are actually affected. And some of us just don't care.

People are people, they will always be people.

But I am not going to trip over my tongue, which is just one of the many many muscles affected by cerebral palsy, trying to politely say "I am a person who has multiple disabilities and chronic illnesses" when I can just say "I am disabled and chronically ill." Look. Everyone else can say what they wish about themselves. I am disabled, a cripple, a gimp, lame, weak, incapacitated, mentally ill, neurologically ill, crazy. I will not use those words to describe anyone but myself. I will not be offended if I am called one of those words. Whatever. You know? I know who and what I am, and I am fine with that. (Although I do not like the word 'retarded' being used in place of 'stupid', not at all. It means 'stunted growth' and that is how it should remain. So, you know, stop doing that.)
But lame? I'm fine with being called lame. Weak, unbalanced, slow. Sure. That is what it means. But privately,

I really believe that some people are getting too wrapped up in all this vocabulary attached to ableism and such. Social prejudice is... very, very tricky. Full of eggshells. But if you are not sure if something you say is ableist... you could always ask.

I have no idea why I typed all of that. But I have been told, over and over, to be 'more PC' about my own personal disabilities. Fuck that. I'm a fucking crazy lame spastic cripple. You are not those things, (probably), and please be proud of that. I would never call you that (unless you want me to, who knows, maybe you do? I'm not in your head and you are not in my head).
(Example: I call myself lame, and someone screams, "Oh my god, that's ableist!" and I calmly reply, "I'm permanently disabled and actually literally lame, because one leg is shorter, and I limp, so whatever." And they shut the fuck up, because what else can they say?)

So I suppose my point is that my mind is mine, my body is mine, my disabilities and illnesses are mine. And they have nothing to do with what sort of words you want to to use to describe me.

So. Thank you? I guess?

I'd heard this quote before, but only just now have been able to place it. It explains some things about society and misogyny in places people don't want to look. I find it fascinating that many oft-used insults are feminine or relating to the female body. As though being female is the ultimate insult. I may just be thinking too deeply, but it makes me wonder. I've been scolded for being a feminist, when all I said was that I believed in equality between men and women in society. I have no idea why people think that's wrong.

*
Julie spoke quietly. "You think girls look idiotic, daft, stupid...?"
"No," I said indignantly.
"You think it's humiliating to look like a girl, because you think it's humiliating to be a girl."
"It would be for Tom, to look like a girl."
Julie took a deep breath and her voice dropped to a murmur. "Girls can wear jeans and cut their hair short and wear shirts and boots because it's okay to be a boy; for girls it's like promotion. But for a boy to look like a girl is degrading, according to you, because secretly you believe that being a girl is degrading."
--from "The Cement Garden" by Ian McEwan, 1978

I'd heard this quote before, but only just now have been able to place it. It explains some things about society and misogyny in places people don't want to look. I find it fascinating that many oft-used insults are feminine or relating to the female body. As though being female is the ultimate insult. I may just be thinking too deeply, but it makes me wonder. I've been scolded for being a feminist, when all I said was that I believed in equality between men and women in society. I have no idea why people think that's wrong.

*
Julie spoke quietly. "You think girls look idiotic, daft, stupid...?"
"No," I said indignantly.
"You think it's humiliating to look like a girl, because you think it's humiliating to be a girl."
"It would be for Tom, to look like a girl."
Julie took a deep breath and her voice dropped to a murmur. "Girls can wear jeans and cut their hair short and wear shirts and boots because it's okay to be a boy; for girls it's like promotion. But for a boy to look like a girl is degrading, according to you, because secretly you believe that being a girl is degrading."
--from "The Cement Garden" by Ian McEwan, 1978

About the whole "Fatties Making Out On TV" article in Marie Claire: Cleolinda and comments said it well.
http://cleolinda.livejournal.com/921195.html

And it makes me think about all the other things people are that are still "socially unacceptable" even though it's the 21st century and we're thisclose to flying cars and nanobots everywhere.

I mean, okay. Everyone has their opinions and preferences and feelings about things.
I can be friends with lots of people who have lots of different opinions -- my social circle bounces around a broad political spectrum. Just because I vehemently disagree with you doesn't mean I would disown you as a friend.
But I admit, I now feel slightly uncomfortable around certain friends (mostly online), knowing that we won't be able to openly discuss certain topics without them cringing over same-sex love or making negative comments about people (while saying that they're not homophobic or racist or sizeist or sexist or abelist, etc). And I feel that in time, the opinions of those friends can and will change. If you've lived your whole life believing something specific and rigid and absolute, it can take a while to open up to all the other options, and even longer to feel okay with it all.
Change is a scary thing. I understand that many people feel safe in their boxes, putting other people in boxes. We all have boxes. I don't care how open-minded and accepting someone claims to be, everyone discriminates and everyone has prejudices and everyone makes judgments.

Boxes are tiny no matter how big they seem. If you're unwilling to move out of your box, at least maybe expanding the box might help.

I keep quoting Depeche Mode in my head.
"So we're different colours. And we're different creeds. And different people have different needs. It's obvious you hate me, though I've done nothing wrong. I've never even met you, so what could I have done? I can't understand what makes a man hate another man. Help me understand. People are people. So why should it be you and I should get along so awfully? People are people, so why should it be you and I should get along so awfully? Help me understand. Help me understand."

About the whole "Fatties Making Out On TV" article in Marie Claire: Cleolinda and comments said it well.
http://cleolinda.livejournal.com/921195.html

And it makes me think about all the other things people are that are still "socially unacceptable" even though it's the 21st century and we're thisclose to flying cars and nanobots everywhere.

I mean, okay. Everyone has their opinions and preferences and feelings about things.
I can be friends with lots of people who have lots of different opinions -- my social circle bounces around a broad political spectrum. Just because I vehemently disagree with you doesn't mean I would disown you as a friend.
But I admit, I now feel slightly uncomfortable around certain friends (mostly online), knowing that we won't be able to openly discuss certain topics without them cringing over same-sex love or making negative comments about people (while saying that they're not homophobic or racist or sizeist or sexist or abelist, etc). And I feel that in time, the opinions of those friends can and will change. If you've lived your whole life believing something specific and rigid and absolute, it can take a while to open up to all the other options, and even longer to feel okay with it all.
Change is a scary thing. I understand that many people feel safe in their boxes, putting other people in boxes. We all have boxes. I don't care how open-minded and accepting someone claims to be, everyone discriminates and everyone has prejudices and everyone makes judgments.

Boxes are tiny no matter how big they seem. If you're unwilling to move out of your box, at least maybe expanding the box might help.

I keep quoting Depeche Mode in my head.
"So we're different colours. And we're different creeds. And different people have different needs. It's obvious you hate me, though I've done nothing wrong. I've never even met you, so what could I have done? I can't understand what makes a man hate another man. Help me understand. People are people. So why should it be you and I should get along so awfully? People are people, so why should it be you and I should get along so awfully? Help me understand. Help me understand."

Look, don't tell me my gay atheist conservative right wing Republican friends can't exist. They're not unicorns, damn it. People don't fit into your neat little boxes. And don't you dare tell me that it is impossible to be a gay atheist conservative right wing Republican living in Virginia with a long term same sex partner. I just talked to both of them on the phone about their cat's failing health. They exist!
You know what, stop talking. Just shut up.
What the hell is wrong with people? People exist outside of boxes and stereotypes whether you want them to or not. In fact, one of the most amusing things I have ever, ever heard was "Your friend claims to be a gay pagan pro-choice conservative Republican? Then he's not a real Republican, because real Republicans can't be gay or pagan or pro-choice." This was said by a left wing liberal Democrat who bragged about being accepting of all people no matter what and who claimed to never stereotype people. I almost cyber-bitchslapped him.
It's even funnier than the guy who told me I was a bad pagan because I was not a liberal Democrat.
Damn it, humanity, stop making me facepalm and headdesk all over the place.
Boxes. They can be broken. Seriously.
Argh.

This is why I stay out of politics. Politics make my head hurt.

If I wasn't in so much physical pain right now, I might rant more, but this is all I can come up with.

Look, don't tell me my gay atheist conservative right wing Republican friends can't exist. They're not unicorns, damn it. People don't fit into your neat little boxes. And don't you dare tell me that it is impossible to be a gay atheist conservative right wing Republican living in Virginia with a long term same sex partner. I just talked to both of them on the phone about their cat's failing health. They exist!
You know what, stop talking. Just shut up.
What the hell is wrong with people? People exist outside of boxes and stereotypes whether you want them to or not. In fact, one of the most amusing things I have ever, ever heard was "Your friend claims to be a gay pagan pro-choice conservative Republican? Then he's not a real Republican, because real Republicans can't be gay or pagan or pro-choice." This was said by a left wing liberal Democrat who bragged about being accepting of all people no matter what and who claimed to never stereotype people. I almost cyber-bitchslapped him.
It's even funnier than the guy who told me I was a bad pagan because I was not a liberal Democrat.
Damn it, humanity, stop making me facepalm and headdesk all over the place.
Boxes. They can be broken. Seriously.
Argh.

This is why I stay out of politics. Politics make my head hurt.

If I wasn't in so much physical pain right now, I might rant more, but this is all I can come up with.