You are viewing brightlotusmoon

Persephone, Asha, Hecate

December 2014

S M T W T F S
 123456
78910111213
14151617181920
21222324252627
28293031   

Tags

Syndicate

RSS Atom
Powered by LiveJournal.com

Previous 30

Oct. 26th, 2037

Persephone, Asha, Hecate

New user name, new self

Hello from the LiveJournal user formerly known as BrightRoseFox.
Due to a complex thingy involving problems with emails and such, I have changed my LiveJournal name, my Yahoo name, and my Facebook name.
Everything is now BrightLotusMoon.
If you know me well enough, you know why I am now BrightLotusMoon.
So, yeah. Just FYI.

Also.
Dear Lovelies:
Not only am I feeling so much better, I truly believe I am worth everything that people say I am. I have been getting messages, emails, phone calls, and comments from friends who have told me what I mean to them. I have been amazed and heartened and lifted and joyous.
I may be a moonlight witch, but I cannot access the magic of the moon without accessing the magic of the sun. And the moon is always there, her power extreme eternally. And the sun is always there, his power intense forever.
I feel bright and powerful and in full bloom, like a great lotus blossom beneath the full moon.

Jun. 8th, 2036

Persephone, Asha, Hecate

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

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...Collapse )

Jun. 14th, 2035

Persephone, Asha, Hecate

My brain to your brain. To the universe.

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

Dec. 25th, 2014

Persephone, Asha, Hecate

To brain the best brain I can brain

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

Dec. 24th, 2014

Persephone, Asha, Hecate

Hmmm. Deep breaths?

My general physician refuses to referr me for hyperbaric oxygen for what I agree is totally valid reasons, unless my neurologist and pain specialist both think it's okay. I just finished a scholarly article saying that there were no conclusive findings or great evidence that it did anything for brain damage. But we'll see what the other doctors think.


Oxygen Therapy or Hot Air? Bioethicists Say Treatment Doesn't Pass the Test - NBC News.com http://www.nbcnews.com/health/health-news/oxygen-therapy-or-hot-air-bioethicists-say-treatment-doesnt-pass-n262791

Dec. 23rd, 2014

Persephone, Asha, Hecate

Rebooting The Joanna via quantum psychic consciousness mixed with modern medicine

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 - my parents who shall remain the best 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.

Dec. 19th, 2014

Persephone, Asha, Hecate

Mmm, oxygen...

http://www.bethesdahbot.com/
On Monday, I plan on calling my pain specialist or general physician and asking for a referral to The Bethesda Hyperbaric Oxygen Therapy Center. It is literally next door to where my physiatrist and physical therapist offices are. And now that hyperbaric oxygen therapy has been approved for things like cerebral palsy and muscle pain, I'm hoping that it might help ease up some chronic pain. A while back, Adam had bought a small canister of oxygen, which made some of my muscle pain disappear for a couple of hours.
So, who knows.

Dec. 15th, 2014

Persephone, Asha, Hecate

Just love me. Love my brain, love my self.

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.
Persephone, Asha, Hecate

It's still a secret no matter how many times I don't say it

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.

Dec. 12th, 2014

Persephone, Asha, Hecate

"No, GIR. That's bad."

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.

Dec. 8th, 2014

Persephone, Asha, Hecate

It's okay, brain. Shit happens.

I did not realize how weirdly difficult it can be to answer the question, "So, what triggered this C-PTSD episode and panic attack?"

I mean, how DO you explain all the fucked up, freaked out, screaming neuronal mess that can cause brief blackouts, episodes of time agnosia, obsessiveness bordering on mania, hyperventilation, emotional outbursts, etc etc etc.

And there is no one thing, two things, any things. That's why it's Complex PTSD. It can be anything and everything. Maybe it's because I read some news articles about police violence against disabled people with no legal consequence for the police. Maybe it's because a friend got triggered by their own things and during our conversation something triggered me completely innocently. Maybe it's because I had a nightmare about that time years ago when a skeevy dude tried to hurt and assault me near a shopping center and was beat up by another guy who just looked at me and said, "Run!" and I fled up the stairs until I couldn't breathe and never looked back. I don't know. I don't KNOW, guys.

You know? You know.

I have reasons for not talking about this stuff outside my psychologists and certain friends. Support is better than silence, though, and I have so much support and empathy to give, so when I need it I reach out to the friends who know.

Anyway. Yes, I took my meds. Yes, I did my exercises. Yes, I ate well enough.

And my cats have not let me out of their sight. (KITTIES)

Dec. 5th, 2014

Persephone, Asha, Hecate

Travel and vacation

Comments on an article about "bone broth" becoming a hipster trend:

"Congratulations, hip white trendoids with a penchant for fad diets and nutritional woo: you have discovered soup. Well done."
"Isn't that what "stock" is? Like beef stock, chicken stock... You know boiled animal parts you season and make soup with?"
"Yes, but we can't call it that, or the white hipsters can't Columbus it."
"But the real question is "what did they think soup was made of before this?"
"Everything delicious will be discovered and given magical toxin-curing properties, and then will be priced out of range of the people who actually normally eat it."
"I really can't with this nonsense. One would think with the whole "slow food" aspect of hipster eating trends that they MIGHT ACTUALLY BOTHER TO LEARN WHAT FLAVORS THEIR FOOD"
"Bwahahahahaha. Bone broth."
"Yes, because "soup bones" didn't exist as a term or a thing before now."
"The best thing I ever saw from a bone broth aficionado/hipster-in-all-manners-of-food-fads was a post on Facebook with a picture of her bone broth saying, "I know this is going to cure the flu I came down with this week! If you get the flu, try bone broth!" I was like, "Oh, how novel! Except this sounds like the advice my grandmother gave me 30 years ago to try some homemade chicken soup (with broth made from, you know, chicken carcass) when I was sick. NOVEL AS HELL."
"Columbusing has gone so far, white people are starting to Columbus WHITE THINGS."

So, anyway. Thanksgiving vacation went very well. It was sweet and quiet and seeing my parents is always always always wonderful. I was worried Mom and I might have Discussions about my health, but all was well. Adam got a rental car from his boss in exchange for working an AV job in Manhattan while our car was at a mechanic's. So, on Saturday, Adam and I drove to New York City. He worked in Times Square to set up AV/IT stuff for a medical conference in a hotel while I lounged in our separate hotel a few blocks away, working up the courage to walk all the way to 5th Ave and back. I passed Rockerfeller Center, I found stimming toys in "I Love NYC" shops, Adam bought me a bottle of my favorite perfume, Euphoria by Calvin Klein. We ate pizza, fried ramen, caprese sandwiches. I had coffee at one of the best coffeehouses I'd ever been to. On Tuesday, Adam's job ended and we drove back to Maryland. Adam's car was still in the shop in Virginia near his workplace, and it was two more days before he got it back. It had stopped running originally. It's fine now, but we were told to start looking at new used cars over the next few months to a year. The station wagon is a 1999, after all, and Ford may not have parts anymore.

I haven't been feeling well in general. But I have stuff that makes me happy.

Nov. 22nd, 2014

Persephone, Asha, Hecate

It Is What It Is.

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.

Nov. 21st, 2014

Persephone, Asha, Hecate

I am the crippled dragon!

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...

Nov. 18th, 2014

Persephone, Asha, Hecate

Lie down, insomnia. Roll over.

Magnolia plus Magnesium plus GABA: Good for sleep. Yes.

From a supplement website:

"Q: What is Magnolia Extract?
A: Magnolia Extract is a standardized herbal extract made from the bark of the Magnolia officinalis tree. It is a traditional Chinese medicine that has been used for thousands of years. Our Magnolia products are highly concentrated for magnolia's active ingredients, and contain 90% honokiol and magnolol.

Q: What does Magnolia Extract do?
A: Promotes relaxation, supports healthy adrenal function, supports emotional well-being, and aids in digestion. The bark contains two phytochemicals, honokiol which may reduce common anxiety, and magnolol which supports emotional wellness. Together they enable one to feel better mentally and emotionally.

Q: How safe is Magnolia Extract?
A: Studies show small doses of magnolol and honokiol are safe for normal emotional support. However, large doses may cause a sedative effect and interact with alcohol, increasing its effects. Therefore, driving or operating dangerous equipment should be avoided when taking larger doses of magnolia extract. Magnolia extract has a two thousand-year-old safety record for use as a Chinese medicine, and as an effective relaxant. Use it confidently and safely … but use it responsibly, according to directions.

Q: Who should use Magnolia Extract?
A: Anyone who wants a safe, natural way to relax and reduce anxiety should consider supplementing with Magnolia Extract.
Additional Information:

Magnolia Extract is a standardized herbal extract made from the bark of the Magnolia officinalis tree. It is a traditional Chinese medicine that has been used for thousands of years. Roex Magnolia Extract is highly concentrated for magnolia's active ingredients, and contains 90% honokiol and magnolol.

Magnolia Extract promotes relaxation, supports healthy adrenal function, supports emotional well-being, and aids in digestion. The bark contains two phytochemicals, honokiol which may reduce common anxiety and magnolol which supports emotional wellness. Together they enable one to feel better mentally and emotionally.

Studies show small doses of magnolol and honokiol are safe for normal emotional support. However, large doses may cause a sedative effect and interact with alcohol, increasing its effects. Therefore, driving or operating dangerous equipment should be avoided when taking larger doses of magnolia extract.

Magnolia extract has a two thousand-year-old safety record for use as a Chinese medicine, and as an effective relaxant. Use it confidently and safely … but use it responsibly, according to directions."

Nov. 2nd, 2014

Persephone, Asha, Hecate

Crying: A Thing That Happens

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."

Nov. 1st, 2014

Persephone, Asha, Hecate

Accept me, accept it all

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

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

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

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

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

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

Oct. 28th, 2014

Persephone, Asha, Hecate

Rock that spirit

This is the greatest.
http://yoganonymous.com/watch-ultra-spiritual/

Good news: Apparently, most of this small weight gain is actual muscle. Who knew.
Annoying news: Everything hurts in such a very specific way everywhere that most forms of exercise make it all worse. The only things that seem to make it better are isometrics and mild qi gong and a few basic Pilates-style moves... sooo, physical therapy with a spiritual bent?

Also, I still have a stress reaction to even the idea of "doing yoga for pain". None of my doctors are surprised. Plus, the physical therapist suggested some lovely snarky replies to "Have you tried yoga for your pain?" - my favorite is still "Well, yoga tastes like artificial banana, and I hate artificial banana flavor, so I don't want any yoga, thanks." Second favorite is "Nah, I'm still trying that floating Jedi thing in the swamps. I'd rather take the Dark Side with the cookies."
Seriously. Don't yoga push me. I did try it, it was painful, I found other things.

Now I feel like mimicking that scene where Bart draws a picture of Flanders and chases Homer around with it yelling "Howdily doodily! Howdily doodily? HOWDILY DOODILY?" Luckily, I haven't been pushed in a while, and the last few times, I remained calm and cool, because I am still fucking awesome.

Addendum:
Also, it's really interesting: I am totally fine with basic yoga, with flow yoga, with restorative yoga. But it is the way people talk about it as though it helps everyone heal everything? That is what I gripe so much about. Maybe some poses will help ease cerebral palsy issues, fibromyalgia issues, joint issues. Maybe. For some disabled folks. But if I say something like "No, thank you, I've tried that, it was too painful, it made things worse, and I have found other exercises that help me," I expect people to, if not back off, then at least acknowledge my reasons. The actual fact that many pushers have brushed off my reasons and kept pushing is what makes me want to slap them with their yoga mats. So when I talk about an exercise by calling it a name that is also the name of a yoga pose, please please do not assume I have taken up yoga. It's just that "Warrior Pose" is far simpler than having to describe the whole thing.
Comments:
Anna Sirén: Yoga? Us? Really? ...?
Joanna Capello Paul: LOL, it is to laugh. But by gods, people love to try.
Anna Sirén: Jesus, I can't imagine you with your ankles behind your ears, and that's not an insult.
Joanna Capello Paul: OMG ow. Ow ow ow OW.
Joanna Capello Paul: I'm just glad other CP folks get it. I don't know what's so particularly special about yoga, but it's become so elitist in many ways. And if I say I'm "doing Child's Pose" or something, I feel like I need to add "not actual yoga because that is painful" because just because it's a stretching exercise doesn't mean it's a yoga pose.
Cara Liebowitz: When a teacher who knows how to handle Ceeps is doing it, yoga can be nice. *coughcough* Kara T. Billingham. Yoga at crip camp was great fun, if painful.
Joanna Capello Paul: My mom teaches a certain type of yoga to seniors in Southampton sometimes, and the moves are so simple they're barely even yoga. What bothers me really is this culture of yoga-ier than thou elitism, and gods forbid I perform a "yoga style type pose" that is not yoga.
Cara Liebowitz: I wonder if Kara and your mom know each other. Next time you're in the Hamptons, stop by The Yoga House, LLC and ask for Kara, tell her you know me. One of my favorite things about Kara's yoga was that she encouraged us to laugh if we wanted to.
Joanna Capello Paul: Hmm. I'll ask my mom! Have you spoken with Kara lately?
Joanna Capello Paul: *looking at website* Well, it's good that she teaches Kripalu. My parents' basement tenant, who is a massage therapist, is a certified Kripalu teacher.
Cara Liebowitz: We speak every so often here on Facebook, last I saw her was over the summer. She is wonderful, wonderful, wonderful and so is her husband. Two very influential people in my life.
Joanna Capello Paul: I haven't been through Hampton Bays in a long time, but I do recognize that sign and building. I have a feeling that Kara and my mom have run in similar circles.
Melissa Boyer O'Doyle: I'd rather take the Dark Side with the cookies.
Heather Stover: I do vinyasa flow yoga and restorative yoga. It helps. With some things. It is not some magic cure for everything. If you're not into it people should leave you alone, your yogi wouldn't want you there with any less then a willing mind and heart.
Heather Stover: Gentle yoga classes are the bomb. I hate elitist yoga snobs.
Mad Miriam: You know you might just get people to back down more quickly by simply sating that you have a very satisfying home practice, thank you very much.
Joanna Capello Paul: ...except that when they keep nudging and insisting, I tend to feel backed into a corner, and I start snarling. I'm a very peaceful person. But I am also shy and isolated. I really don't like being pushed.
Mad Miriam: If your agreeing why are they still nudging and insisting?
Joanna Capello Paul: I really wish I knew. People are very odd.
Mad Miriam: I'll say. I'm sorry, I for one do not push cause well I know you have met the practice where you are at and since yoga means union isn't that the fucking point anyhow?
Joanna Capello Paul: Agreed. That's why I am so upset and pissed off when people don't seem to understand the whole damn point. Union is about, y'know, respecting people's choices. The fact that there ARE yoga practitioners who almost bully others into doing their kind of yoga - particularly disabled people - hurts me.
Joanna Capello Paul: For example, in the cerebral palsy support group I am in, there have been stories of non-disabled people pushing CP folks too hard, leading to injuries that were not fully recovered - physical and emotional. And that is just not right at all. And I feel like that is part of the weird elitist attitude that shouldn't even exist with yoga practice.
Mad Miriam: OMG Joanna Capello Paul I could not agree more, as a fairly mild arthritic I get the same shit and I don't get why its so hard for some teachers to understand that just cause I got into a really low lunge last week this week my knees and hips might just be too stiff to go there and that it does not mean I am not dedicated to the practice, it means I am listening to my body, something we should all aspire to do more often.
Joanna Capello Paul: Listening to our bodies! Exactly! I don't think people like that care about listening to the body anymore. You do what YOU must do for YOUR body. And I am so burnt out on teachers who don't listen. It's why I do restorative, flow moves with my mother over the phone.
I mean, I literally cannot be straight. When I try a lunge, or a pose that requires balance, I have to ask someone, usually Adam, if my body lines up. And when he helps get me into a straight aligned line, I start wobbling. It hurts. I am in serious pain. My body, my very bones, were never going to align like that. And so I need modification, compensation, compromise. And the fact that a lot of yoga practitioners have insulted me just for that literally created a stress reaction in my brain. So when I talk about yoga poses, I have to say "modified basic yoga" otherwise I start hyperventilating just from memories.
Mad Miriam: It is a myth that our bodies and bones can align to some artificial standard, we all all have such diffent experiences and phsyologies that make up who we are and it my mind if you are making room for the breath and creating sensation, but not pain you are doing it right. I totally agree through and think it is part of the problem with the comodifying of yoga, I think once upon a time, maybe there was the root of the notion that yogis practiced to access a place beyond pain and body and to reach a space where they could meditate and focus on breath and vein, but with institutions like lululemon and power yoga people see their yoga as about perfecting the body and not reaching past the veneer that is the body. Its fascinating and sick really.
Joanna Capello Paul: I appreciate you saying that, Mad Miriam. It makes me feel better, knowing that there can't be such "perffect alignment". I was always, always told that I'd never reach any ideal pose with cerebral palsy. So I stopped. And I found isometrics and just started doing meditative stretching, which was my version of yoga anyway.
Mad Miriam: Next time someone starts to push hard ask them if they practice Ahimsa, it is the first basic principal of yoga and translates into compassion for all living things, if they say "Of course." then tell them you do as well and intimately understand what is most compassionate for your body. Namaste.
Mad Miriam: I think all the wrong people have been foisting their opinions on you. I took up Kundalini yoga last year and the whole idea of it is that through the practice you are opening up channels on your spine for the kundalini energy to come spouting out of the top of your head, I expressed concern that I had a slight scoliosis in my spine and that according to this notion I was ineligible for kudalini enlightenment, my instructor said "No worries, the energy meanders its way around these things, it's like a stream." Thus I go with that notion.
Joanna Capello Paul: Ahimsa, eh? I shall look into it!
I have fallen in love with kundalini energy. I do what your instructor says, instinctively. I don't necessarily do all the poses and moves but I reach for that energy in my own way. Maybe one day you and I could get together and practice in our own imperfect methods?

*****
Copying stuff from other social media sites can be interesting...

Oct. 21st, 2014

Persephone, Asha, Hecate

Notes for the Self who is disabled and attempting to understand

http://notesoncrazy.com/2014/10/turning-off/
http://emmashopebook.com/2014/10/21/mistaken-beliefs-people-have/
http://www.theguardian.com/commentisfree/2014/oct/20/disabled-lord-freud-austerity
http://adiaryofamom.wordpress.com/2014/10/21/17146/

Oct. 9th, 2014

Persephone, Asha, Hecate

MRI Image Photos

https://plus.google.com/100400881094218310019/posts/2QhbpM1cg9c

So, that's the link to all the photos they took during my MRI. You know, from here:
http://brightlotusmoon.livejournal.com/1673757.html
http://brightlotusmoon.livejournal.com/1672704.html

I'm trying to still figure out where my neurological seizures happen, since I have problems in the corpus callosum but there's no mesial damage, so. Time to research neuroscience. And then talk to my neuroscientist.

Oct. 6th, 2014

Persephone, Asha, Hecate

My father's Masonic mural

https://www.dropbox.com/sh/kortss8x9wfkdn0/AAA--sqw--nZpKp8bl2C5pa9a?dl=0

So, anyway, that's the mural painted by my father - a mason and an actual stonemason -in the Masonic temple in my hometown, Sag Harbor, NY. Since it's Dropbox and I've never used Dropbox, I wouldn't mind ideas on how to share and such aside from this.

Anyway, my dad is amazing. This is chilling, you guys.

Oct. 5th, 2014

Persephone, Asha, Hecate

Wait, it's been a year approximately? Happy, anniversary, diagnosis?

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

Sep. 30th, 2014

Persephone, Asha, Hecate

And life goes round

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.

Sep. 29th, 2014

Persephone, Asha, Hecate

I do love MedScape

...I do need to get an account of my own, mind you.

A friend posted this, so I'm sharing.

****

You need a (free) Medscape account to read this (you may, er, need to fudge a little about *technically* being in the healthcare profession . . . my opinion is that those of us who need to spend significant time managing our medical care are roughly equivalent to being at least *part-time* healthcare workers.) ;P

It's important to stay up-to-date on this, because medical continuing education programs don't necessarily require keeping up with specific disease criteria, and may be more general in nature -- plus, the trigger-point/tender-point exam has been around for so long, it's a matter of habit with some clinicians. You will be best-armed to manage your own care, if you walk into your appointments without assuming that your doctor is necessarily knowledgeable about the *most* recent research.

"[T]he 2010 criteria was to create diagnostic criteria that were more user-friendly for clinicians to use in practice— for example, reliance on the tender point exam, which we know may be incorrectly applied in practice and be misleading in suggesting that FM is primarily a muscle or tendon problem as opposed to being primarily a problem with sensitization and dysregulation of the CNS. The new criteria rely more on pattern recognition of the constellation of chronic widespread pain along with other characteristic features such as fatigue, sleep disturbance, cognitive dysfunction, and irritable bowel symptoms—symptoms that may occur either as an independent entity or in association with other chronic illnesses such as rheumatoid arthritis or osteoarthritis."

http://www.medscape.com/viewarticle/831471

Also, a recent study has shown that fibromyalgia patients process multiple types of sensation differently, not just pain sensations:

"Brain scans of patients with fibromyalgia showed that they processed nonpainful stimuli, such as sound and touch, differently than the brains of people without the disorder. This may explain why patients often complain of hypersensitivity to sensations in everyday life, author Marina López-Solà, PhD, from the Department of Psychology and Neuroscience at the University of Colorado, Boulder, told Medscape Medical News.

"What we wanted to know is whether in fact there was something in the brain that would account for these feelings in response to stimulation that is not painful in nature," Dr. López-Solà said. The study, published online September 15 in Arthritis & Rheumatism, used functional magnetic resonance imaging to show that patients with fibromyalgia processed visual, auditory, and tactile sensations with reduced brain activity in primary sensory processing areas, combined it with higher activity in sensory integration areas such as the insula, compared with individuals without fibromyalgia."

http://www.medscape.com/viewarticle/831831

Please feel free to quote and repost anywhere -- just please don't attach my name to it, since I don't want to lose access to *my* Medscape account. Thanks!

***

Sep. 25th, 2014

Persephone, Asha, Hecate

Humans are twatwaffles.

I want Soren Bowie to be my friend.

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

Sep. 19th, 2014

Persephone, Asha, Hecate

Being Elsa: Pain triggers stress triggers pain triggers augh.

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.)

Sep. 18th, 2014

Persephone, Asha, Hecate

Words that mean things, always

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!

Sep. 17th, 2014

Persephone, Asha, Hecate

Living means...

...and then you find a blog post like this.
http://autistictimestwo.blogspot.com/2014/09/i-wanted-you.html
And everything you felt about being such, deep inside, comes up and out, and you catch it in a clear quartz prism, and you turn it and examine it, and you hold it up to as many lights as possible. And it is all beautiful and even those cracks and dark spots are beautiful.

People don't always pay attention when an autistic person is killed by their parent or guardian specifically because of words like "burden" and "burned out caregiver" and "mericful" and "for the best" and "couldn't take it anymore."

Like Kelli Stapleton - and yeah, typing her name made me feel a pain in my fingers. I have no emotion for her. I could hate her, but this is beyond hate. No sympathy. Kelli took her 14-year-old autistic non-verbal daughter Issy and attempted murder-suicide via carbon monoxide poisoning, rather than seeking actual help, therapies, and treatments for Issy and herself. And she has a cheerleading section. I cannot wrap my mind around this. People are supporting her, calling her brave, shattered, wonderful, because she "put up with lower-spectrum autism" in her child for so long that she finally snapped. Feel sick? Me, too.
This happens dozens of times a year, more, and rarely is it reported. Now, I didn't know until this past spring, when I began navigating the careful waters of autism activism. I can't swim. And some of my new friends are dragons. I keep a lot to myself. However, I need those dragons, those growling leopards, those night-seeing owls, to make sure I navigate.

The point is that when a neurotypicalm able-bodied person says "I love you because you are amazing because of your disability"... that is powerful. I have never, ever felt unwanted; I had intense, deep, powerful love my entire life. However, my social peers, educators, and adult peers obviously had different reactions.
One phrase I dislike is "Don't let your disability define you"/"Don't let your disability become your identity." I laugh a wry laugh. See, a congenital disability is part of what defines me. A congenital disability is part of my identity. I realize and understand completely when those phrases apply to acquired illnesses and acquired disabilities. But I'm someone who is, as they say, disabled and proud.

So that blog post is a big hug.

Sep. 13th, 2014

Persephone, Asha, Hecate

Companionship, stories, scars, and power

Copied from Facebook.

1 "When you’re going through a thing like this, you tend to latch onto ANYTHING that isn’t panic inducing and repeat it over and over to avoid the things that are terrifying..."

2 One time, a long while ago, I was having a panic attack, and so I shifted my thoughts to looking for a lost plush animal to move away from the panic, and I told Facebook because I have friends here who understand, and I was told by a random acquaintance that it was unnecessary to post about having lost a toy, that nobody cared because what good would it do, and that I should post more meaningful things.
Panic attacks don't care even more, but at least they start to fade once you work through them and work past them. Internet trolls don't. Especially not those who don't care what panic attacks do to specific people and how they get treated by specific people.
*quick deep breathing*
Goodbye, trolls. I turn away from you. I will quit talking about being harrassed and move on.
Also, panic attacks suck. So I am focusing on my stuffed animal toys and my cat Callisto, who is snuggled up with me like comfort.
That is all.

3 My phone case from Diztronics is deep blue with blue and silver glitter. It's like someone spray glittered the TARDIS. My Galaxy S4 is red, so it is amusing. :-D

4 I did a chaotic organization of medical supplements, loved toys, loved books, skin care; and all the patterns I'm seeing are making me squeal and dance. And now to watch all of Futurama on Netflix, and then Uncle Grandpa, and then The Amazing World Of Gumball, and today is a Soft Clothing day because my skin is being sensory processing disordered and hypersensitive to pressure. Etc. And The Amazing Amanda will understand because she and I are like autist sisterlings.
#littleAutisticthings

5 I decided that resistance bands are better than push ups for my capabilities and issues. Grab each end of the rubber band and lift up to my chest, pull and hold for one second and do as many reps as I can. It works various upper arm muscles, shoulder muscles, chest muscles, and ab muscles if I engage them. Then my brain sorts through patterns to connect to different muscle sets and brain signals that might work best with the hemiplegia. Sometimes I color code the central nervous system activities when I can. It takes a hell of a lot of meditative concentration and it doesn't always work. But it is fun and it is soothing.
Compromise, compensation, modification, personalization. My mother always made sure I could do stuff however I had do.
#LittleCerebralPalsyThings
#LittleAutisticThings

6 "So please, just listen. I know you’re afraid, but being afraid is alright. Because didn’t anybody ever tell you? Fear is a superpower. Fear can make you faster and cleverer and stronger.
And one day you’re gonna come back to this... and on that day you’re going to be very afraid indeed. But that’s okay, because if you’re very wise and very strong, fear doesn’t have to make you cruel or cowardly. Fear can make you kind.
It doesn’t matter if there’s nothing under the bed or in the dark so long as you know it’s okay to be afraid of it.
So listen. If you listen to anything else, listen to this. You’re always gonna be afraid even if you learn to hide it. Fear is like a companion, a constant companion, always there. But that’s okay because fear can bring us together. Fear can bring you home.
I’m gonna leave you something just so you’ll always remember. Fear makes companions of us all."
- Doctor Who Season 8 Episode 4 "Listen"
-Now one of my own personal fear litanies

And also, see, as a signature, I tell stories and engage in conversations as though my Facebook friends are already with me.
It is highly frustrating for some, and I've been harassed over it by random strangered acquaintances and bored trolls because they want to know stone details in rational and logical ways that are opposite from my whimsical spontaneous blurting out wordenings, but they don't realize that I am waiting to reveal, I am preparing those stone details for later in the story and that is how I work and how I brain, because a neuroweird brain like mine isn't very straight, it is curvy and looping and wavy and look over there at the shiny. Autist? Sure. Artist? Yes. Atypical neurology? Forever.
Details are for the comments sections, in which the story continues like a deep conversation. I never plan to engage conversations, but when it happens it becomes magical and it becomes anything.
And so this monologue in an episode about facing fear and patterns of lonely and alone and companionship and need, I see stories and conversations that veer everywhere across a dozen thought processes, neural connections zooming and smashing and spiking as ideas slam into each other.
Come, friends, fall into the story with me! We can converse in the comments. But don't be harsh. Be kind. Be clever. Be an empathic friend, not a severe critic. Be companions, and we will ride these blurted engaged stories buoyed by the strength of companionship.
Spoilers.
http://www.threeifbyspace.net/2014/09/doctor-who-804-listen-quotable-quotes-points-to-ponder/

7 "Scars tell the story of our lives, inscribed upon our skin. I’d not remove mine for the world." -Failure To Fire Comic via comments section
http://ftf-comics.com/?comic=face-reveal-2
It took me so, so long to accept the scars I had as a newborn. Like... three decades. Alex has acquired scars, so I feel that I have a sort of mental dissociation with that for some reason. I still feel irritated, literally and figuratively, with my scars, since no matter what they hurt but are also stories.
Discussion to continue in comments. I'm in a weird headspace.

Sep. 11th, 2014

Persephone, Asha, Hecate

I can see my brain from here!

FYI! Got my brain CD. The neurologist couldn't find anything out of the ordinary that was not already abnormal, etc. So I went and got the CD with my MRI and brought it home, and Adam turned it into a Power Point presentation. I wish so much I knew what to really see, that I could see with a neuroscientist's eyes. I can see my butterfly's broken wings. And the thinning of the corpus callosum.

Let me see if I can copy from the paperwork...

Abnormal dilation of both lateral ventricles with an asymmetric area of dilation along the mid body of the right lateral ventricle. Waviness and distortion of the lateral ventricular margins bilaterally. Dilatation of the third ventricle. Partial absence of the septum pellucidum. Generalized thinning of the corpus callosum which appears grossly intact. These findings likely represent developmental anomalies of the brain; however, these findings could also represent the sequela of in utero ischemia and periventricular leukomalacia. There is no evidence of focal abnormality of the temporal lobes.

Ahh, science. *basking in words*

Now, however... I am still irritated about the lack of EEG response. They tell me I was born with epilepsy - and there is the physical evidence in my brain creature right there. However, I feel... I suppose silly is the word. This may not be an ordinary kind of epilepsy where electrical activity shows up on EEGs. But... but that doesn't necessarily mean anything. I guess. I just sometimes wonder, that's all.

Previous 30