The Return To Innocence

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

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

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

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

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

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

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.

Good news: I have personal anecdotal evidence that at least six grams of Inositol powder per day have seriously curbed symptoms of multiple anxiety disorders, OCD, and ADHD-Inattentive Type. It will take a few months to really see major effects, but combined with the new Cymbalta, the therapeutic inositol is a good thing for me. For ME. Mom sent me the inositol powder she had because she said it was too sweet. It's been replacing sugar in my coffee for a few weeks now. Besides, you need more inositol if you drink coffee.
http://www.integrativepsychmd.com/articles1/inositol

I'm almost recovered from this respiratory virus thing. Using Mucinex D has helped, although I'll be happy to no longer need it. I miss free deep independent breathing. Not even these qigong exercises work enough. But that is what modern medicine is for. And holistic medicine for balancing support. *drinks more Fenugreek honey tea with mangosteen powder*

The fibromyalgia flare that has plagued me for a full month is still in full strength, but I feel like I am too used to it. I wonder if that's a bad thing.

I see my general physician tomorrow anyway: We were planning on discussing my new positive relationship with Cymbalta and its amelioration of my worst episodes of OCD, ADHD, panic disorder, and nightmares. But mentioning something to kill a virus is a good idea as well. And the next day is my monthly pain specialist appointment. I plan on talking about the canned oxygen treatments I've been taking.

I forgot to come back here after the new year. Sorry, journal. I was busy.

Today, and yesterday, and the day before, I've been... I guess it's ill with a cold, or a cold and allergies? It seems to vary. Obviously, a fibromyalgia flare has been set off. I've been dizzy, shaky, sore, with a scratchy throat, itchy eyes, runny or stuffy nose, yada yada. If it keeps going past a few days, I'll call allergies.

At the end of December, Adam and I began talking honestly about my Neuroweird, and he figured I might do well on an ADHD drug or similar, which made me consider SNRIs, which made me recall my first attempt at Cymbalta in 2002 that went wrong, which made me decide, after talks with three doctors and my insurance, to go back on Cymbalta in place of Zoloft, to see if an SNRI would do better at poking away at my Neuroweird. In combination with the personal therapy regime that will be slowly happening for probably ever, it is working. Most of my compulsive episodes have been very controlled. It is hard work, obviously. Everything is hard work. Sometimes we who have multiple intense chronic illnesses forget to mention how hard it is to just... be. Every day, all the time. Or people who don't understand might forget how hard it is. Not having episodes of... All The Issues, it's hard.
Cough.
Anyway.
Maybe I just forget, because it's all happening to me all at once, constantly, in the background, and I'm so used to it that I wave it off and go "Meh, it's just Things, it's always been Things, whatever" even though my entire brain is screaming and full of storms. I don't listen to myself enough; I'm too used to me. That's part of an upcoming therapy session, too.

Very current parts of therapy have been literally watching comedy videos while exercising. The Nostalgia Critic videos on YouTube, for example, and Futurama on Netflix, and Cartoon Network during the day (Woo, Amazing World of Gumball, woo, and also the creator of Uncle Grandpa was in my high school class, heeyy).

I've been sleeping with plush animals again since childhood. It's fabulous. Ty makes lovely plush My Little Pony dolls.

So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - who shall remain the besy family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.