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)
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.
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.
brightlotusmoon: (Asha)

Copied from a comment I left on Facebook. During a discussion regarding how cerebral palsy might or might not be seen socially as an active disability that impacts a person's social or professional life
***

I am medically disabled.
I'll be medically disabled and socially disabled even when society makes everything accessible and easier to navigate.
My disabilities are part of me forever because of my brain being abnormal and different from the average. I'm cool with that.
I don't want to fight or struggle or handwave against it. Disability is a part of Joanna Me, just like shortness and writerbrain and cat loving an writing paranormal urban fantasy with future elements.
It is one definition of Joanna Me but it is not the biggest. It gives me powerful insight into my world and the world around me. It's like a friend woven into my neurology. However, there are much stronger definitions to show.
Being disabled and having a disability are often unconnected depending on how the person feels. Hence the disconnect between medical model and social model. Cerebral palsy is medical, but social depends on how society is able to make room.
If someone wants to see my disabilities first, that's cool, as long as they see the rest of me too.
I identify as disabled. One of my disabilities is cerebral palsy. It is a result of congenital  brain damage. I will always be brain damaged. I will always be disabled. That is fine by me. I embrace being disabled while having a disability.
The End.









brightlotusmoon: (Asha)
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.
brightlotusmoon: (Asha)

Hello, walking pneumonia,  it's been a long time.
Grump. Adam has shaken it off like a wet dog thanks to his supreme immune system. Me? BAHAHAHA NO. Grump. The virus teamed up with the fibromyalgia, spasticity, ataxia, epilepsy, and autistic comorbids. Adam couldn't get how I was too weak to lift a slice of beloved New York pizza to mouth unless I drank whole milk just for calories. It was hunger, viral illness, disabilities, chronic illnesses, altogether now. I'm eating slowly as much as possible now. My go to safe food during hunger fatigues is always dairy, since it saved my life in college, and it's been long debunked that dairy products make the body produce  more mucus. Second safety food is nut butter like cashew and almond, or peanut butter. Yesterday's sandwich of  smooth cashew butter with lingonberry preserves on multi grain bread was divine.

I'm super cold. My temperature is so low, I'm a brown dwarf. Husband's joke, he's the astronomy nerd. While I agree that I may not have enough mass to trigger internal combustion yet, the neuro-psychiatric chemicals and neurons running around the inferior parietal lobe are making jokes about how "less mass is the whole point lolz" and excuse me, I need kick my brain in the insula now.

Current encouraging meal: yellow rice mixed with crema, mushroom, and crumbled bacon. Really really encouraging flavor.

(Seriously, my basal temperature hovers around 98.3 normaly. Right now it's at 97.2... Husband is always amused that I rarely create my chi flow after meals. He's a furnace, instantly beginning metabolic burn so intense that he projects heat. Me? My core is cold. My chi might as well be ice. Since I do work a little with chakras and basic reiki, I know how often my solar plexus chakra is partially blocked. Weird thing is that the few times I did healing touch on friends, they mentioned that i projected cooling energy, like a burn being soothed or a soft autumn breeze.

I will see if I can start my metabolism furnace more quickly. Also, velvet cardigan!

brightlotusmoon: (Asha)
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.
brightlotusmoon: (Asha)
http://www.speculativeliterature.org/Grants/SLFDiversityGrant.php
I had no idea this was a thing until my mom's novelist friend mentioned it. I'm going to apply and then look at other grants.

BTW, FYI, JSYK, etc: I'm happy. Nothing to do with cults of positive energy or what have you; although positive thinking plays a small part in a specific way, as well as negative thinking, which folds up into balanced thinking energy whatsit. Everyone is always saying "Find your happy." And I have. I'm still going to have low, bad, poor, ugly times, because that is life. People are going to criticise me for things and such, because that is life. Right now, the only thing that matters is how I feel. Good, bad, positive, negative. But I'm just happy. That's what matters. *slowly nibbles on a glazed honey bun*

First novel really is close to finished. I am struggling to figure out what's the better way to blow up everything before reforming. Exploding reality is haaard.
Second novel is flitting around my writerbrain. I think this is going to be all nonsequential. I'll assign chapters later.

LOL, my kitty. Callisto has taken over my leather task chair on which I use a Pillow Pet as a cushion. If I'm sitting, she jumps into my lap, walks behind me, curls around me, and suckles on my shirt while kneading.
brightlotusmoon: (Asha)
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.
brightlotusmoon: (Asha)
http://www.nancyfulda.com/movement-a-short-story-about-autism-in-the-future

It really is a gorgeous and poetic story. At least one member of the support group I'm in has pre-judged it because there is the concept of a "cure" via grafting in the brain, but said treatment is clumsy and doesn't always work. So, hey, I always say read the story before claiming "if it's about cures it's not beautiful." It's not about cures, it's about living in a mind that sees the world in a way that most people never will.

Autism is vastly different than my other disabilities. I'm proud of it. I'm proud of my brain, everything it has accomplished and attempted during its neuroplastic growth. And having a mother who, while thankfully is not a raging martyr mommy, is at least accepting and respectful of the idea that autistics generally don't want any cure, is good good. I am still so grateful that I wasn't diagnosed until adulthood. And that self-diagnosis is just as valid as a piece of paper from doctors; most auttstics who realize they are autistic (I had both and also encouragement from autists who have known themselves for years and years). It's not that "we were diagnosed with autism" - it's that we realized that our autism makes us what we are. I'm different and I love it. I don't want to assimilate with neurotypical brains. Like the girl in the linked story, I want to look at the universe on the atomic level and know how beautiful it is.
brightlotusmoon: (Asha)
Yes, obviously. Sheesh.

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

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
brightlotusmoon: (Asha)
Okay, first thing:

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

***

Unrelated, copied from Facebook.

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

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

***

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

***

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

***

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

***

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

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



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

Now my body is ready to fall apart, lose consciousness, and catch fire. I hope I don't have those awful dreams in which my higher mind tricks me into thinking I am "healed" or some shit.

To head off any comments: When a person has various disabilities that are neuromuscular, muscuoskeletal, neurodevelopmental, and related to chronic pain of all kinds, healing exercise and healing workouts do not solve anything. There is no magic energy flow strong enough to tweak symptoms, syndromes, or conditions for the better. All it can do is slowly, carefully, mildly soothe and smooth out the cracks little by little. I'm going to fall over after I work out. It's going to take time and more, new pain. It's a cycle.

I already take [supplements that help with post-workout fatigue, with pain, with achy muscles]. I will list them if there is interest. No need to suggest anything. Eventually, I will feel mildly better, even though spasticity and hypertonia will just force everything back to normal, and then I'll need to play the game of "Is it palsy spasticity reset or epileptic seizure aura?"

This is an announcement: If you see someone with a disability like cerebral palsy and they are preparing for any kind of workout of exercise, don't make assumptions that they will automatically immediately need help from you. They know what they're doing, how to do it, why to do it. And they will ask for help if and when they need help.
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.autisticsspeakingday.blogspot.com/2014/11/autistic-ways-of-reacting.html?m=1
My mother has always insisted that I be more self aware. I never figured out why that was so difficult. I'm learning so much. I feel like rediscovering myself.

" Low emotional self awareness means that i can be – often have – building up to full meltdown without even knowing it. On a really low self-awareness day, I can be crying or raging over something and not even know that I’m crying or raging, let alone why. Tears will be streaming out of my eyes, and I’ll insist I’m fine, it’s just my allergies. Not because I’m lying, but because my conscious brain is genuinely unaware of how upset I am."
brightlotusmoon: (Asha)
Well, shit. I should have realized. It's been over a year. And I just wrote this comment over at a friend's. I should post it here as both an anniversary reminder and as a general thing.

A lot of parents of autistic kids and adults don't know how to work with and help their children, turning to damaging methods like ABA - which I am still reading up on myself, as scary as it is. But lately some of those parents have taken up a mantra of "speak to autistic adults; listen to autistic adults." Nothing About Us Without Us, indeed.

'See, my autism is my new best friend. Really new. I don't know its favorite sub-shade of green yet. It doesn't know why I prefer cobalt blue and hate powder blue. We are circling each other, even after a whole year of being introduced despite having a whole life together. We are both really uncertain about specific TV shows for different reasons. But I don't know what my autism would say to non-autistic parents of young autistic children, and my my autism isn't sure those parents would like it and thinks I might sound like a jerk. So, I'm kind of flailing. What DO you say?'

#littleautisticthings
brightlotusmoon: (Asha)
The replacement medical dog tag, which features the main medical conditions that essentially encompass most other syndromes - cerebral palsy and autism have so many comorbidities and associated disorders that most medics will get the idea.

medicalalertpendant


It came via a website called Sticky Jewelry. They're pretty awesome, and affordable. This came with a free cleaning chamois cloth and a free medical identification card on which to fill out vital information, like emergency contact, physician phone number, prescriptions, blood type.

The pendant I attached it to is an Etsy-bought custom-made ouroboros pentacle with an amber stone. It has a lot of power for me. Also, it's a fun stim.
brightlotusmoon: (Asha)
Because part of All The Therapy is blogging my feels. And this was short enough anyway.

'kay.

I'm having a Being Elsa day. My symptoms are awful and well beyond control, and the smallest thing triggers the fibromyalgia pain and the mild C-PTSD symptoms. I cannot even hear or read someone speak from the cult of positive thinking without internal screaming.

I've seen many other friends here having similar issues. I'm not dealing with a terminal disease, but said terminal friends keep reminding me that we are all "In This Together" (that's my current ringtone. It's from Apoptygma Berserk).

I admit, the Being Elsa days seem to counter the Being Alice days (Being Alice is my code for epilepsy, seizures, and postictal aka post seizure state. Being Elsa is a new code for mental illness and neurological disorders including all chronic anxiety, social phobia, chronic stress disorders aka complex post traumatic stress disorder, sensory processing disorders, and some co-existing conditions linked to spastic ataxic cerebral palsy).
That was much words but I was born full of words. I blow word raspberries.

I totally do have gleefully joyful fun talking about my medical history. Interested friends have told me that I tend to discuss it clinically and technically, as though describing a patient who is not myself. I've been told that my medical and scientific wordening as a curious patient has helped fellow chronic illness patients examine their own conditions closely to find ways to help treat specific symptoms. That is such an honor.

Anyway. Is anyone else having their own version of a Being Elsa day?

(Alice is from Alice in Wonderland and Elsa is from Frozen. Because of what happens to them. Etc. I actually still have not seen Frozen all the way through yet. I will, obviously, and it will be many times. But I relate desperately well to Elsa, her hidden aspects, her representing disability, autism, childhood abuse, chronic anxiety, PTSD, personal orientations, and her love for a sister beyond a potential unnecessary husband. I only have chosen sisters and I love them so hard like the stars.)
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!

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