Wonder if that would happen a lot more if I'd boost this post. I've never boosted a post on Facebook, but I probably will once the book comes out. One of these will click to the twitter link, which already has over 400 impressions in less than 12 hours, the other will click to its new Autisable home.
And I really don't know if that had anything to do with waking up to a Google Alert that Janika Banks has been added to a German white pages listing on Denmark internet.
This is translated.
And I wanted to see if that's a real thing, and sure enough, comes up on page 3 in a Google search for Janika Banks. Brand new out of the bag.
A couple of years ago someone told me they were going to write up my Wikipedia page, and I laughed and said sure, go ahead. No one really has yet, but for some reason I've either been auto-boosted into legitimate search or manually entered by someone on a job or weirdly obsessed. I'm going with auto boost for now. There are so many automated info pages out there I could claim (traity was dumb, I had it for awhile and let it go), but that's way too much work.
Like I told a friend privately a few days ago- "If I don't get my crap done by end of summer, I'm an idiot. My launch platform has never been more visible."
So I get a porn boost right on top of #netneutrality, crack me up, and then I get a major Google Alert on top of my self-stim post. Never in any parallel dimension did I wildly dream of sex selling anything about Janika Banks. Wow.
:edit: Space Cowboy suggests putting pretty girls in vids to sell merch. Pretty sure some of us are in it for the actual music, so here you go.
Also, this is a thing. I have lifetime potential earnings of $33, crack me up. Bet that would change real quick if I could get some of my friends talking with me about Lexx and stuff. Anyway, you can get into this and click around, kinda fun checking out other channels. Very handy.
This is my personal intro on my activity wall at Autisable.com. For newer autie bloggers coming out now, I go back to 2008 as Bluejacky and have been autie, spoonie, and depression blogging for nearly ten years. And scifi and other entertainment commentating. Lots of that, going back to 2004, actually. I go back to 1994 in internet fandoms. Anyway, if you are interested in autie blogging, whether on spectrum yourself or someone you know or whatevs, Autisable is pretty awesome and we'd love for you to join.
Hello =)
For ppl who don't yet follow me anywhere, I'm a huge scifi & Sherlock fan, and I keep up fairly well with the real time breaking news from the Sherlock/DoctorStrange/Benedict fandom in real time on twitter, plus live tweet Syfy, TWD, and other shows with the #Snarkalecs, and I've got Lexx groups and pages and a fan blog that's been translated into several languages by other fans. I lightly stay in touch with a lot of people who are really spread out, which is ideal for me since I don't do deeper friendship groups well. My friends on twitter who survived the Pond of Death era are really solid, even though I never got back on social media to make friends. Took awhile, but I think I've about found my balance on the webs.
I've made it pretty clear in several places that I don't respond to "hi" or "how's it going" prompts, nothing personal. Hard experience has taught me that vague chatter usually comes with some kind of agenda that diverts my focus, and that usually winds up in what I call exploding bridges. No more blowing up bridges, which means I don't respond to chain yanking. Aspienado is not a doll with a string for personal entertainment, although I still fall for it all the time because Pinky Robot has an automatic response and comply program. I'm far too congenial until I realize I'm a pet on a leash, and then I bite. Nine years with a psychologist is helping me understand why I repeat this pattern over and over. It's called being 'easily led'. I have a court appointed payee based on glitchy cognitive documentation. I'm high IQ and unreliable for time orientation and following directions. If I were Star Fleet mapping planets, I'd be the one who'd stay in the same uniform for 48 hours straight and show up in the wrong conference room, but my report would be immaculately detailed.
While others carefully walk the line of self discovery either with the #actuallyautistic tag or vicariously through their kids, I'm full blown diagnosed aspienado and don't apologize for who I am. I am the bull in the china shop in an eyeblink even when I'm trying my best to behave, and the most challenging thing I've learned on the webs from PR is 'don't respond'. I don't realize I accidentally shred people mowing them over, and I very obviously cannot shut up when I get started, even though I am very quiet in real life and read, research, and study prodigiously. I am driven like an addict toward information input and processing (I'm a compulsive reader, and yes, that is a real thing), and a friend of mine nailed it asking me if I'm a robot. Yes, I am Pinky Robot, learning to integrate all my split web personalities into a psychologically healthy whole.
I'm also YabloVH on the Mo Creatures minecraft multiplayer server, so if you love minecraft, I do, too. =)
I'm not into negativity or any kind of side taking. I used to eat people for sport or think it a challenge to asplain stuffs, now I think there are better things in life I can be doing. I'm very thankful for Joel and Autisable being there for my first step into public sharing the real stuff in my head, and I've been practicing being public on Pinky blog so I don't blow the internet up and then hide in my cave. I'm not into comments, commentary, praise, stick poking, or general "Happy whatever-day-of-the-week-this-is", but I've found my niche in fandoms and memes, and no one will ever be able to pry my brain tentacles out of that crazy abyss.
My goals are simple: Stay public no matter what, and keep sharing my journey integrating into a more socially functional and psychologically healthy person so that I can be good for other people, and especially help despairing parents from the other end- I am your child all grown up now, and I've even had my own kids. It took me a long time to connect all my dots so I could see the bigger picture, but I understand now my mom didn't get what she needed from me, and even though it's too late for her to see me now, I can still encourage other parents who are still getting through the hard stuff with their kids. I was a screamer who got motion sick every single time I was in a car and screwed up every holiday visit with relatives and argued about jots and tittles and shut down everyone trying their hardest to give me a hug. Hi, I am aspienado, and I know now that I love my mother very very VERY much. Please know your kids will get there, many of them probably a lot faster than I did.
And now I'm going to run off and forget to come back here for awhile, because that's what I do.
I've started attempting to share my journey into understanding and using communication to my psychologist. I grew up epic fail at communicating ideas and feelings, failing to interact well with others, misunderstanding their needs interacting with me. Social skills are definitely not my forte.
I've always been verbal and able to respond, but from the gitgo, I was that difficult child who always seemed to do things backward or wrong. Even if I understood the dynamics of what to do, I couldn't follow the emotional dynamics of the instruction communicator once emotions became involved, and there's nothing like frustration to really tangle up a set of instructions. Adults who repeated themselves often started chopping off parts of previously said sentences, not realizing those might be the most important parts to what I was missing, so disaster followed me around in very facepalm ways. But I thought you *didn't* want me to... oh, well. By the time someone was yelling, yes, I would follow those chopped up instructions exactly.
THIS IS WHY ROBOTS WILL KILL THE HUMAN RACE. It's not their faults. Y'all need to listen to yourselves talk sometime...
I was in college when I finally learned communication SCIENCE. The process of words between people is beautifully expressed as an irreversible algebraic function, and you can add all kinds of variables. I didn't learn this in communication class so much as plug in what I learned in algebra to the idea that once something is said and added to, those are irreversible parts of communicating and must be taken into account in order to move forward. When I saw that combination of concepts blaze across my brain, I was finally at a place to start communicating "I need", "I like", "I want". I was in my 30s before I realized how vitally important it is to say "Thank you" to my spouse and be emotionally cognizant of people around me. It's not so much a matter of being functional for each other, but of helping us feel good about being with each other. Aspienado is here to bridge that gap between the autistic brain and the neurotypical brain, which I see as the 'instinctive' brain. I was born without natural instincts for socializing, but thankfully, I was born with the tools to help heal social problems.
I'm the sort who can easily break down communication at any level and see it in my mind as logic trails, like the way people program robots with flow charts, simply put.
Because I see communication that way in my mind, I can easily find where a convo goes off track and try to reset someone I'm talking to back to a point where we can start over and move on. However, other people's heads don't work that way at all. I didn't know this as a child. I would try and try to steer someone back to a very particular part of the convo where we'd need to start over in order to understand something between us, but most other people get super tangled up and very emotional when someone tries to do that. They don't understand from their POV what is even going on, no matter how it's explained.
So I lived most of my life frustrated at others' frustrations over me not getting things while I quash my own frustrations over them not getting things, either, and even learned to master the art of avoiding the pitfalls they couldn't see were coming. I'm getting good at steering people clear of misunderstanding me when I'm paying attention. Sadly, I start zoning out fairly early on because communication is 'boring', and so it's easier to just stop talking most of the time. I keep it really simple, using little cues I'm able to pick up to interject questions and therefore keep the other person talking so we last longer without getting frustrated. But because of this, many people around me rarely know how I'm feeling or what I'm thinking.
One of my best examples of someone not knowing what's in my aspienado head is that Scott and I were married for 15 years before I felt he was finally ready to understand (and I was finally able to verbalize better) what I gave up when I quit my advanced degree program to stay home and be a good mom for his kid without us getting into a fight about it because of misunderstandings and feelings. I am that patient. By then there was no emotion from me, no malice or bitterness, no regrets or wistlessness. Just information. Yes, I gave up what could have eventually turned into a multimillion dollar project that would have set me for life, and I accepted that because it was my choice, but it wasn't a choice I discussed with my husband before I made it. Just because I'm autism spectrum doesn't mean I don't have a clue what love and commitment are, but I did understand back then that no matter how I tried to share it, neither of us would have been able to talk about it without melting down into something emotional, mostly because we were young and beset with too much input from other people. The idea that I'd value a second marriage above becoming a multimillionaire isn't something I find astounding, because logic also extends to satisfaction levels. I needed Scott in my life. Despite his full blown ADHD, he's the most patient person with me that I've ever met, even when he's frustrated. He has NEVER left me, no matter how much he has felt like it sometimes. I see far too many lonely people online wishing they had someone like that, so I know how valuable this relationship is, no matter how I feel at any given moment. How I feel is transient, chemical, and usually brought upon myself. I can't even imagine humans creating robots to 'feel' and not understanding this themselves.
Autism spectrum is very scary to some people. Aspienado is here to change that.
The people around me cannot see what is in my head. I cannot get it out to share. It has taken me decades to learn how to express what I can see and how it works in here, and now I'm practicing doing that out loud on my psychologist. Part of my path is this blog post. This is part of my map through the jungle. It's ok if you don't get it or even like what you see. Not everyone enjoys this kind of stuff, but the people who do enjoy it are making really cool things for your lives, like cell phones and games and TV and stuff. Awesome.
So the question is- how did I figure it out? The first part up there was the key that opened the door, that communication is an irreversible function. Over several years other things started falling into place. Another key is the idea that socializing is a game. Once I figured out how the game works, I was able to play it better. There are bits I used to dismiss as useless and irrelevant that I didn't see were vital to 'start up'. Most convos begin with a start up routine. This routine must be engaged before one successfully continues to discussion. Aspies like jumping straight to discussion, kind of like R2D2 plugging into a wall socket (I so love when I can do that!), but other people feel more comfortable with some variable of hello-how are you-cool shirt/nice shoes/insert noticing something here- eye contact and a smile- let's get a coffee / won't you sit down / come in I'm making cookies / insert invitation to join here- you see what I mean. I've always assumed all that stuff is a given and I can skip those steps and jump straight into convo, but that dismisses the human in front of me. If I skip those steps, that person feels awkward and used. I didn't even think about that for years.
So seeing communication as an irreversible function and then as a game were real eye openers for me. I can game my way through convos now, and I can gauge my success by the way we part. I won't go into the disengage routine here.
Believe it or not, the science of chaos was one of the big ice breakers for me, and it began with understanding some of the things in that video I put at the top of this post. Please notice that the whole reason that entire video started was over communication problems between computers over a wire service, so this is communication about communication servicing communication. Aaaand I just metaphorically mandelbrot'd an idea about communication. I could koch curve it with lots of little inserts that jaunt off into multiple meanings, but then I'd lose most of you. Heads up, I think I'm being cute with words here, and I know it's failing, but I think it's fun anyway.
Chaos is exactly what humans are to me. Everything in my childhood felt chaotic, not making sense. Cause and effect are not always easy to see with human communication, and it took me a long time to learn cause and effect anyway, so let's just blame that on leaps of thought for now. But the secret in the science of chaos is that there are inherent patterns even in the midst of wild chaos, and human behavior is no different. I have a sociology degree and was deeply into Asimov's trilogy about psychohistory. Douglas Adams also played with human predictability in his Dirk Gently series (the books, which I adore), and all through his Hitchhiker's Guide series.
Imagine a person like me working on a sociology degree intersecting interpersonally with a mathematician working on an advanced degree in topology and having convos about whether human predictability was a real science or a mockery. Back then I wasn't able to discuss anything very well. If I had been, I imagine we'd still be a thing, or at least still in touch, and I sometimes still feel sad about that.
So. Now we are building a list.
Communication is an irreversible process,
a game that can be manipulated and played well,
and predictable. That is crucial. If one can learn the predictability of behaviors and responses, one can begin to understand what the patterns are in the chaos of communication. Behaviors and responses rest on how one's day really is going, how one's meal is not settling or hasn't arrived yet, how one might be worn out from a long day or a virus. Communication must bend around lots and lots of variables in order to be successful. It's not as simple as plugging into a wall socket and exchanging information.
That still didn't give me enough to work with for good communication, but I started applying as much of my new knowledge as I could when I could with fairly sweet results, for the most part. And then everything went horribly wrong...
Schematics in my mind weren't a good substitute for the inherent intuition that others are born with. I was still bypassing far too much, not realizing my coping skills were affecting my own communication efforts. I had been taught all my life to hide my flaws and 'perform', so playing the social game amounted to playing a game of masks. That isn't a very good way to keep friends. I would keep up a dialogue that I thought sufficient for interchange, possibly equal to the amounts of whatever I got incoming also outgoing, which meant convos turned into competitions. I really had no idea that's what I was doing, and I grew very annoyed at it when I realized that's how it felt. All I had to do was step out of my own routine and acknowledge someone without the reciprocal balance of give and take. I could have had a very good lifelong friendship with a real person on my own street if I had realized this simple thing. The dynamics were puzzling, and I was given every chance to respond to some very real reaching out. I can look back now and see how valuable I could have been as a person in someone's life, and this person probably never understood how valuable they were in mine, because I didn't understand that reciprocal give and take isn't the way we play the communication game.
I see now that I was far from reciprocating. I matched content. I didn't validate or 'hear'. I misinterpreted attempts at real connection because I didn't understand what connecting IS. Connecting in simplest terms for aspienado is like electron flow. It's the point where exchange can flow, and exchange is genuine caring. Being friends and communicating isn't about spending time and back and forth exchange, it's about connecting. It may have nothing at all to do with the content, but feeling like that content was heard.
I understood none of this until that friend was long gone. A lot of my sadness was about not feeling heard myself, but I'm pretty sure now that I was heard very clearly and couldn't see that because I was so lacking the ability to connect socially, to appreciate and exchange genuine feelings, whether or not content was shared. I can see now I was a dismal failure at being what another person needed as part of a support network- a friend.
Irreversible process,
gaming,
predicting,
connecting...
By this time I was 40 years old and close to giving up on ever having a friend.
By the way, Lexx fans, have any of you noticed (watch the videos) that the Lexx is a character representation of Mandelbrot's all-inclusive Julia set equation?
Ok, now we're arriving to the weird place where I was nearly ready for my whole world to flip me upside down.
Connectivity is energy flow. We already think of emotions in those terms. Sometimes interaction can be a real drag, other times it can sparkle. Words we use to describe interactions and particularly conversations involve words that also apply to energy flow. "I am on fire!" "The conversation was electric." "The party was hopping." "Class was stultifying." You could play with this all day.
I had become a rogue dipping in and out of internet convos for quick exchange, not really connecting. Once in awhile I'd spend more time talking somewhere, but not usually for purposes to get to know anyone. When others wanted to get to know me, they either quickly dropped by the wayside or clung on parasitically. I was very used to this, having been in and out of fandoms for years. Not much of it phased me, most of it irked me, and I was just as bad as everyone else to hit and run.
A TV show changed all that. Because it caught my attention so hard, I went down a really big rabbit hole going after everything I could find about it, and along the way ran into other real people doing the same thing. I did my usual blitzing in and out of forums, leaving comments in guest books, and then something changed, basically, blogging became a thing. I made my first couple of blogs, wrote a few feelings about the show, and the first contacts started. I increased my content output, drew more interaction, and so forth. Back then I was very green, and right on the cusp of super fail. 2004 was the year my world crashed into darkness, years of illness and grief, and everything from there was me split into two- the me in a mask online and the me behind the mask trying to keep up. I didn't realize this for four years. During those four years I slogged through mental sludge akin to the kinds of mental loss that people go through after brain injuries from strokes or car accidents, although there was no sign of damage. I lost math and spacetime orientation, became dyslexic, suffered short term memory deficits, and long term memory jumbles. I could no longer hide being autism spectrum, like I'd been taught from childhood. I also plummeted physically to the point of wondering if I'd lose both hearing and vision, and finally had to quit work for good as my health crumbled even more into needing help with self care. I could no longer put on my own shoes and socks, needed help shopping and bathing, and even had to stop driving for awhile.
During this time, I hung on as hard as I could to the only thing I could still seem to do- construct sentences. I very slowly built a fan blog for that TV show and spent a laborious amount of time creating a little bit of content for it. I credit that obsession with keeping me out of the kind of self destructive depression that would have been horrible for my family.
And during THAT, there was a person that talked to me nearly every day. Not the usual parasitic follower I had become accustomed to. Not a needy person needing attention. Not one of the 'crazies' in a raging fandom. No, an actual, real person was talking to me, on the side, about real life, about hopes and dreams and real thoughts about story content...
I was on the brink of understanding relationship connectivity. I was so close to grasping what I need to do to be someone's friend, but sadly doing it through crushing loss and disability. I tried to keep it all separated, but it was like steering my spaceship through a violent asteroid field during battle while trying to text, to borrow what at that time would be a futuristic visual. My kind of contact was like emotional hit and miss because I was working so hard to hide all the distortion I was filtering and fighting through just to be able to chat a bit. It never occurred to me to be honest. I was so used to a lifetime of being pressured (forced) to hide my autism challenges and then years of internet masking to avoid real people showing up at my house (it happened) that I couldn't see I wasn't making myself emotionally available. The friend eventually slipped away and over several very sad years I finally realized THAT was it.
AVAILABILITY. Let's add that to the list!!!!
Irreversible process,
gaming,
predicting,
connecting,
availability...
I have spent the last several years practicing on being emotionally available for others. It's like learning fancy dance steps for a cotillion. I like it. And as I'm learning this part, I can now see where and why others are afraid of learning this. People can be pretty mean. *I* used to be pretty mean! I can look back now and see that when I thought I was being my cleverest or wittiest, I was actually being quite mean.
I didn't have an empathetic bone in my body for many years, and I don't think it's necessarily because I was incapable of it as much as I was raised by someone who didn't understand even the basics of it. My dad wasn't intentionally cruel, just extremely practical. My mom's overwhelming feelings were like a silly string hitting a boulder. I grew up without empathy, never felt forgiven for being a problem child or understood as a person, closed myself off from everyone most of my life so no one could hurt me (that's a great way to wind up hurting oneself instead), and pretty much the only way I learned empathy was over many years of very slowly waking up through my own children and learning to see from their eyes and my mother's eyes simultaneously. My children are natural caretakers. I have no idea how I missed all that when it was my turn, except that I was so terribly deficit at being emotionally available, I just didn't know how.
I'm a natural problem solver, and my biggest problems in life have always been social. I can feel what I need- stability, validation, mutual support, stuff like that. It took me awhile to figure out how to get those. You can't shortcut and force it. Just getting married to someone doesn't do the trick. It's an internal journey, and journeys must align for that kind of bonding.
Somehow, my journey aligned. I could see and feel that I'd had what I needed, but I was at a loss how to have kept it. If I'd been more emotionally available, a lot of those lost feelings would never have happened. I had spurned emotional attachments most of my life, but deep down I know I need them or it feels like I'm dying inside. Humans are natural bonders, we bond with nearly anything that moves, even plants and places. We 'own' our loves, take what we need into our souls. We don't just abide alongside, we deeply entangle ourselves with someone, something, anything. Hobbies or games if nothing else. We need that emotional attachment to be healthy.
So that's where I'm at in this journey now. I'm sure there is more to come. I wanted to share my perspective on the importance of learning to communicate well from my own point of view. It's not just about pouring out my soul, dumping my day, splatting my feelings (or hiding them). It's about realizing that everything I've ever said to a person is still inside them painting a picture of me, that I have the power to enhance that picture, that I can imagine how the next brush stroke will go, that I can help hold the brush, and that we can both feel good about that.
Yes, it's complicated and it's hard. That looks intense even to natural instinctuals, right? But imagine growing up with a deficit and none of that comes naturally at all. It's kind of like a Beauty and the Beast scenario, I guess. Both sides must figure out how to come together into a bonding friendship.
I need to be done with this, it's been a bit consuming, lol. Aspienado touching down and blowing stuff around...
This is extra thinking if you're in the mood- basics for colorizing a mandelbrot. About 11 minutes in we arrive at a sweet communication function visual, continue from there so see 'attraction' splitting into a group convo, if you will (minute 13 on is fabulous). It's idealized, but that's how I 'see' communication. I think Asimov would've had a ball with twitter trend prediction.
Someone in Bangkok wants to know why Rick Lagina doesn't get married. Search phrase- "why rick lagina doesnt want to get married" Seriously, I'd quadruple my traffic overnight if I'd just write a few sentences about Rick Lagina once or twice a month. All it took was two posts mentioning him a year ago and he's still my top search referral.
29% of all my keyword traffic comes from people running into those posts during searches. These searches are worldwide, many of them rabid to know more about Rick Lagina's sex life. Highest impressions (vs click-throughs) on GWT analysis are from "Rick Lagina death" or "Rick Lagina dies".
Guys, Rick Lagina totally beats out "dr evil leo" (srsly, next top impression), Khanlock, Megavolt, and "Benedict Cumberstitch". And then we see "Rick Lagina bio" ranking ABOVE Benedict Cumberbatch in searches where Pinky blog comes up, and you know how much Benny C I've got in here.
I'd obviously be a fool to never mention his name again. Mildly facepalming over whether catching up on the last season in a post full of screen shots would be worth a little extra time this month. I've actually been wanting to make more memes. It still looks like I'm the only person in the world who's ever memed the guy.
Kinda looks like Doctor Strange's mysterious brother or something, doesn't he? No wonder people are going crazy over Rick Lagina. Here is Ben on set filming Doctor Strange.
And now I'm the only (so far first) person in the world to link Rick Lagina and Benedict Cumberbatch into a combo search field. You're welcome.
Here's a clip from The Curse of Oak Island. I reeeeally hope they find something. I have every episode saved on my DVR. Season 4 renewal has been confirmed. The premier date on the History channel has not yet been announced but will likely be later this fall, like last year.
The Autisable guy asked in passing on facebook how long it takes us to write up a post. This took about an hour between coffee, fact checking, and linking. Don't forget that the season finale 2-parter for Fear the Walking Dead is on tonight! @bonenado is really into that show. I'm still in countdown mode for The Walking Dead, #teamNegan.
Oh, yeah, and super awesome Syfy live tweet last night for The Crooked Man, that rocked and now it's deflating into people mistaking it for a Trump hashtag, so I'm not going to link it.
And now I need some Stephen Strange and more coffee. Don't forget to set your line ups and have a great day.
This Pinky blog will be 2 years old in 3 days. Pinky blog originally came from Pinky Robot blog, which suffered a server migration.
And that blog actually started after this- Are you a robot? For some reason, that question was like a little snowball that eventually avalanched my whole mountain down. See what happens when you put 'pinky robot Janika Banks' into a search bar... She never knew me as Pinky Robot.
10 1/2 months after I first ripped open about Pinky Robot in hybrid- how robots go on, I finally got the courage to put her name and city into a search bar. I was thankful to find this post, because it was such a relief seeing how I felt already worded out so I wouldn't have to. I know that sounds weird coming from someone who writes nonstop, but seriously. How The New Mexican Government And Prison System Failed Its People
As I ripped open, starting a little over a year ago, my blog hits doubled, and then tripled, and lately I've let it slide back down a lot because I found a lot of my answers and got busy playing on minecraft. Despite this being my slowest month so far since March 2015, this is what my stats look like right now. No, I have no idea why, nothing obvious is standing out in referrals and other incoming like bots in my past have. I'm going to guess it has something to do with the Olympics though, because the majority are going straight to dotcom page instead of posts, probably from bio links on twitter and facebook.
And the reason I say Olympics is because alla sudden I've got all these countries showing up in stats this last week (blogger only shows top ten in any list)
and month
and I had that big tweet on the 5th that's still pulling in impressions
and pages like this showing up in my referrals lately. I'm going to guess my tweet got pulled into content curation or something. The page wouldn't translate for me, you can click that and try if you want.
And while I'm in stats, let's see what you all look like.
Top browsers this month-
Top operating systems this month-
This is usually what I see in visiting countries because of Lexx, Merlin, Sherlock, and other fandoms.
This referral cracked me up. Don't worry, it didn't tell me who you are, it's just I don't usually see it announced like that.
It's been a very long week, and I know some of you guys probably still think all I ever do is twitter and facebook and minecraft and then TV when Scott gets home from work, but I actually do read once in awhile, and today I got lost in some really cool write-ups about labyrinths throughout human history around the world, including Going Around in Circles: The Labyrinths of Theosophy. "The pattern of the classical labyrinth looks like the brain, and walking it is a dance with the forces of the universe. Just as in life, the goal is to reach the central source, but the path to it takes one close and far away by turns, until finally, the center is attained. At this point, the seeker realizes that his journey is only half done, for now he must dance the energy of the source back out to the world." Plus a lot of other good paragraphs. If you'd like an easier version, try The Labyrinth: A Brief Introduction to its History, Meaning and Use.
Social media is my labyrinth. I meander in an out, sometimes walking with others, sometimes walking by them going other directions. Sometimes I am silent and contemplative, sometimes I am moved as I move.
I'm not sure if I'll be posting again real soon or not. I have a minecraft date in the morning, and Tuesday is 2 appointments, psyche guy and sleep study consultation. Tomorrow around noonish my scheduled Autisable post goes live again. Several of my original Bluejacky posts are starting to show up on my new Autisable blog, and you can see they go back 7 years. I forgot I even wrote this one 5 years ago- Psyching Up – Becoming Liberated. I was one of my psychologist's very first adult autism spectrum patients. We both hung in there, and I've come to trust him completely as one of my most solid relationships. I'm not sure yet what kind of new material I'll be submitting, but blogging has definitely helped me communicate better when it comes time for more one on one with my psychologist. It's like getting all my thoughts rounded up and weeded out first.
Bluejacky, Pinky Robot, Aspienado... All my ways of dealing.
Ok, I need to escape this post and move on. THIS. Out just today and going viral.
"My idea of the perfect hell is for the person you are now to meet the person you could have been."
This pic clicks to a user profile on a game site. I was looking for something else and ran into it.
Pink and blue together is a big deal. It seems to exquisitely depict emotional clash. Once you become aware of it, you see it used a lot in all kinds of artwork that way.
Pink and blue together is also very peaceful and mysterious, especially when you see it in photographs or artwork of the sky and space.
I guess it's statistically my turn for crap delivery, last 2 packages delivered (one UPS, one USPS) from two different national warehouses arrived not just damaged but one shattered like it fell off a high rise building and the other snapped in half like it had been run over in someone's driveway. Since a pair of fashion sunglasses made it here all the way from Shanghai in great shape without any extra special protection, I guess I'm getting my package abuse quota out of the way, which means holidays will be awesome this year. Last Christmas, a box I sent out got delivered to the wrong house and wasn't recovered until that family got back from holiday vacation. I'm actually ok with the damages, because the Soap DVDs inside the completely broken case are somehow just fine, and I had no idea that cool seashell toilet seat (scroll way down) would break that easily, and we've got a 3 year old showing up around here slamming the lids around. If that had happened instead of in transit, I wouldn't have been able to go after a refund.
For someone who spiked a 102 temp over the weekend and broke out into blisters (doctor verified hand-foot-mouth), Bunny was a nonstop pistol yesterday, so it was like being back on any kind of service job on a super busy day where you skip breaks and even lunch for 6 hours straight, and then Papa came home half a day and they went outside for an hour and came in worn out, and then sudden blissful silence when a nap finally took her hostage. Most of my day was like this.
No idea yet if daycare will be a thing today, so I can't help being up early just in case. My brain actually woke me up around 2 asking to be brined in coffee and I told it to shut up and tried to go back to sleep, but the *bing* was strong and now here we are at 3, letting coffee do magical things.
This is the first time something I've submitted has been officially scheduled.
Post #6257 "thank goodness there is an Autisable!" was scheduled ... It will be published on August 21, 2016 at 12:05 pm This action was taken on August 13, 2016 at 12:11 pm America/New_York
Originally published 5-22-09, linked back to it from twitter 12 days ago when Autisable finally went live again after server move and then host migration, and now to be officially vetted and republished on an (inter)nationally networked nonprofit community of thousands that has received 100K hits, if I'm remembering a tweet or FB status correctly. From their LinkedIn description-
Connecting the Autism Community, providing a place where people learn and discuss all issues surrounding the Autism Spectrum. Autism effects 1 in 54 people worldwide. Xanga.com launched Autisable.com in May of 2009. Autisable, LLC took over the site in July of 2016. If you are a writer and are syndicated on Autisable, feel free to add yourself as an Employee. However, please also include your syndicated blog on your account as a reference.
Don't think I'll be adding myself as an 'employee', but hopefully I'll get a couple more things submitted this year.
omg, sudden #coffeefail. I may hafta go lay back down for a few minutes. I need to be dressed and ready to head out around 5:30 if Bunny wakes up with a fever again, so I don't have much time to close my eyes. This song has been in my head the last 24 hours because Bunny. I've come to really appreciate the sparkle of high energy people since this is the second one now I'm helping get through tiny childhood.
I started this post yesterday. If you have depression and are easily triggered, please exercise truckloads of caution if you try sticking through this post, ok? I really went there.
From a post I made 4 years ago at janikabanks.xanga.com. The html is abysmally screwed, but I fixed what I could. Only one person has ever been told what I intend to do with this, so the private title is in the queue and one of the projects I'm working on.
My fave thing ever is pirates. I read everything I could get my hands on about pirates when I was a kid. Captain Blood by Rafael Sabatini captivated me at a pretty young age, and I absorbed the The Count of Monte Cristo by Dumas (j'adore Dumas!) almost through the pores in my skin. My fave ever Pirate movies are Blackbeard's Ghost, Yellowbeard, The Pirate Movie, Cutthroat Island, and the Pirates of the Caribbean series. My other fave 'ship' movie is the Horatio Hornblower series. I didn't grow up anywhere near an ocean or even a lake, but I have this kinda private thing about ships. I'm working on my own thing now, but a few years ago, this is the kind of stuff I liked doing.
Ok, hopefully that doesn't kill the wrap on the rest of the post. I had to go after those words heading clear out to my livingroom and wrestle them back into the corral. *preview* Ah, yes, working just fine now.
This week is already weird, and I desperately need to pull back into a touch base here, so let's just start off with my face feeling prickly and itchy. Nothing puffing up, yay! Just the nerves. The first time it ever happened I was in my late 20s and my doctor tried me on several different meds until we finally just gave up. The phantom itching is maddening, and after a few years of absentmindedly scratching around an eyebrow or beneath my lip or by my nose, a doctor commanded me to STOP before I wind up with cellulitis. Thank goodness it never got to that point! SHOULD YOU SCRATCH THAT ITCH? MAYBE NOT
So I switched back to beta blocker, histamine level spiked (yay, allergy season!), and now my face is all itchy and prickly for 'no reason', but it's all the same trigeminal spots I've always had to deal with, so apparently neurontin and cartia together impact my nervous system differently than neurontin and my original beta blocker dose together. Incidentally, I can't prove anything because my weight stayed steady this whole month, but I've worked really hard on the 1500 calorie thing, and I seems like whatever I lost got replaced by fluid retention. I swear I'm more jiggly now. Not cool.
Med changes, yo. At least I'm not craving brownies like last month. But srsly, where's the tranq gun for the maddening bursts of itchies sparkling up behind my eyeballs. Ok, enough of that. I'm very seriously thrilled it's not doing this down my throat. Those kinds of days are terrifying.
K, got on here to FOCUS. I need a super power point, hang on. (Coming back to this sentence during proofread and just shaking my head.)
Ok, Autisable went live today. I'm not staff, but I was one of the early contributors. Not paid. This is not for profit, I think. Anyway, Joel started this community of networked writers on Xanga before the big server move, and I've watched him survive and rebuild pretty much from scratch, and that inspired me more than just about anything to hang on, keep working on my own stuff. Again, for those of you who've never lost everything you've built in a server move, including specialized coding and a really excellent cutting edge mobile platform, the stress is unbelievable. I would compare it to an internet earthquake or hurricane or something, just everything wiped out and gone and having to pick up shreds and pieces and literally start over with a new foundation.
MY POINT. See what I mean, I'm super scattered because this itching is so distracting. Anyway, I've created a special Aspienado facebook account to share my Autisable submissions. Autisable is what inspired Aspienado to come out in public and start working on Existential Aspie. My tagline will hopefully be the preface to my book.
If you could go back in time and do one thing, what would it be? I would go back and give my mom a big hug and tell her everything is going to be ok. –Existential Aspie
I need to review a few other things going on. Organization!!! Thank goodness for back to school. Ok, went to my phone to find a pic and played on FB for 15 minutes. Here we go. This is my back to school purchase, along with a CD holder not pictured (because I have CDs scattered all over the house and the cases are getting destroyed and I keep losing CDs the way people lose their keys). I've pulled together a reading list for the year (sploit, I'll send you the books as I finish them, so don't buy them), and I've decided I need to get back to watching a show during the day while Scott's gone to keep me off minecraft when I go ditzy, because I've lost swaths of time 2 days in a row switching back to the beta blocker. I need to focus back on time awareness through the day, so I'm creating a new syllabus for myself, hopefully it'll get me through the holiday slide intact. (omg, I forgot about the time I discovered a search for 'holiday slide' landed me back on this post.) But yes, I do need to share actual real brain stimulation going in for all the people (including my psychologist) who wonder if I'm taking the broadcasting out part of my life too seriously. You people really have no idea what I actually do most of the time, so guess what, I'm giving myself book report assignments through the fall.
I think I shared my new backpack on twitter last month, hang on. Yes, here it is. Aspienado is really bad to get into ruts and use things till they're so messed up or messy that I'm a walking disaster, so freshening up the ol' bugout bag was a must. I treated myself since my last backpack was a $3 leftover after Walmart had been savaged and left nearly bare, and it was initially targeted for ten year old boys and really didn't hold that much. This one holds my whole house.
I've also liberated my new umbrella of its tag. I've been using really old and almost broken umbrellas since college (I cannot believe I've had that blue umbrella since the late 80s, THAT tells you a lot about my ruts right there, and the green one has to be nearly 10 years old itself), so when I saw this one in a pharmacy, of all places, on a rough day, I pointed to it and @bonenado totally got it for me. I'll have to take care of it because the entire handle is wooden and has an auto button to pop it out, very James Bond kind of thing. I know, some of you are questioning the whole going more feminine thing when I've been neutral for so long, but butterflies and roses have special significance in my family, and I really did have to have this. Plus there are pocket watches (me and time problems) and keys (key to the Lexx), so yeah. hello goodbye
Grasping that becoming Pinky to the world is how I am emotionally surviving isn't necessary to understand, but Bluejacky coming back out to play now is extremely significant. It means I'm healing.
At least in my heart and soul and mind. My body...? This is a hard summer guys. All I can do is just keep writing until I literally can't any more. It's too hard to tell if I can still hope for progress, because I'm sliding down so hard I'm not sure I can finish what I started. I keep telling myself hang in there 5 more years. I can make it 5 more years. I mean, it worked when my kids were in grade school and middle school, kept shooting for target dates and actually kept making them, and even though I honestly never dreamed I'd make it this long, I know the only road forward is harder than ever now. blinking in the light (the original reveal)
If you've never read Hinds' Feet on High Places, THAT. @bonenado and I had a really good talk over this last weekend. If I'm in final sprint (and it could be another ten years, I can't see the future), it will take everything I've got.
I'm just glad I'm getting all my head stuff worked out. I feel like I'm getting all my homework done on time. Assignment: Earth- You will occupy a body and learn to use this body to play well with others, share your toys, and learn wisdom. This will count toward your dissertation on Why We Are Not Mean To Each Other. Once you've satisfactorily completed this assignment, you will level up and move on to other things. Some call this the Hard Class, the pass or fail class, but think of it as extra credit and you'll be fine. You'll each be given Time and Space allotments to complete this assignment, and the only thing you'll be graded on is whether you manage to pick up on what becoming an autonomous being is all about. The only way to learn this is through experience, and you won't be able to take your notes with you. Good luck.
I need to be sweet and remind a few people that I'm not critical, ok? I'm just facing that I'm heading there. We don't know when or how soon, watch me make it to 80 now, right? But for those who are still pretty new to the real me, yes, this is actually how I have lived raising my kids, day to day, week to week, month to month, and year to year. I haven't taken a single thing for granted since the car accident.
But the race is on. And I wanna win.
All this writing encourages me, so if this is bothering you, you need to go do something else, ok? I'm *focusing*. Writing is just as athletic as any other sport. You plan, you practice, you assess, you practice some more, and you keep doing it and doing it until you're good enough to play hard enough to win. Sorry so long, but it's just that kind of day. Minecraft isn't helping right now. And I don't wanna talk about this on twitter and facebook. I only link it so it's easier for people to check on me if they want to. BACK TO SCHOOL. The syllabus construction. So among the reading challenges and rearranging my days so I'll be more aware of time and consequently more productive, I have several projects I want to finalize this year. One of my biggest challenges is this mobile office and the sudden interruptions. I've been working on organization for years, and it's amusingly hitting me that it's been so long that most of what I need to organize is truly useless now, and I can start throwing a lot of it away. When we were going through bankruptcy, we had to compile and keep tons of information, same thing again with my disability case, and between insurance changes and EOBs and all the junk mail on top of it, plus bank account stuff and keeping bills straight and forms filled out in timely manners, and then taxes and renewing car plates, and all of this being regularly poofed like leaf piles through birthdays and holidays and sick days/weeks and all kinds of other stuff, and then tech fail, omg you guys, I have lost my book contract in the shuffle so many times... Yes, both digital and hard copy.
But I have to keep my head on straight enough to remember to write groceries down on a list and then actually follow that list, and I'm failing simple list goals just running to Walmart, so of course I feel overwhelmed. But look at all the stuff I keep getting done. Look what I did this morning. I grabbed content I already had and used it to help promote a site announcement. I feel good about it, I feel like it helps point me back in the right direction, and I feel like the rest of my day is ok now because I spent a few minutes doing something useful. It doesn't take much, just a little bit every day. Five minutes. It really does add up over time.
So, August. My anniversary is tomorrow. I'm glad I wrote that, I got @bonenado a card and hid it, so now I'm going to go find it. I'm usually too scattered to even get a card, but I actually have one this year, and now it's out in time, instead of laying in a drawer, yay! Ha, it might be the last one he ever gets if I keep staying this scattered, though. You wouldn't believe how utterly ditzy I have felt the last 6 months.
*screaming gear change because that made me think of brain fog*
I was in my 20s when I was diagnosed, and I got that diagnosis within a month of seeing a doctor who fast tracked me to rheumatology because I'm such a severe case. They knew next to nothing back then, even though they already had criteria established on how to diagnose. I know from experience that getting back to a normal life might never be an option for me, because nothing we've ever tried has worked very long helping me pretend normal is even an option. Fibromyalgia Has Central Nervous System Origins
I got disability on the first try. What Does It Take For Fibromyalgia to Qualify As an Impairment Under the New Ruling
What I'm saying is that I'm one of the first patients in the medical field to be diagnosed so early and live this long with it, and they don't yet have a 'lifelong' definition for this kind of thing. They're talking about cases that last at least 3 months and still insisting there's a way to live a normal life, and I'm not seeing anything legally or medically definitive on someone who is 25 years in on something like this. There is no research on how people age through this. It's still only conjecture, and they're still studying it. Fibromyalgia linked to decreased brain connectivity
We've ruled out MS, AS, RA, and Lyme is still being considered a nonplayer even with antibodies. This article is only a year old. Fibromyalgia now considered as a lifelong central nervous system disorder
It's about defining what living a normal life actually means. I'm fighting to stay functional in my own home. I think for me, it's more about living a useful life. What can I still do when it seems like I can't do much at all? I can type words.
I have made it through at least 2 1/2 hours of what I call a really rough morning. I was kind of laughing with another snarkalec one day about how those of us in the most pain have such blow off phrases for how we feel, yet those of us who live like this totally get the code. I have a pain rating system that most people don't have a clue exists. The doctors use a 1-10 scale, and I insist I'm using the Princess Bride scale (not to 50!) in a 1-10 world, and on 'really nasty' days, that line runs right off the scale and keeps going around every wall in the room. If I'm 3 walls over, it's a shitty bad I'm in hell kind of pain day, and there's no way I'm going to talk about it beyond calling it a nasty pain day. There is just no way to convey context in a world where simply having a migraine and an emotional meltdown rates a 10 (and I do apologize, I don't mean to trivialize that at all, it's just I'm so experienced at that being a side order on a main dish of fibro). If I say in a doctor's office I'm at a 10, I'm either violently throwing up, unconscious, or spasmodically weeping with no way to console or comfort me, and believe me, I have scared ER doctors even after pain shots.
Pain scales are extremely relative and subjective, so I've had difficulty trying to convey meaning to what I'm attempting to communicate to a doctor who hears '10' from people calmly sitting in their chairs without even a facial flush going on. That has actually happened right beside me in a triage room. The woman saying it looked bored. My blood pressure was 193/110 and pain was nearly blinding me, and it just sounded so stupid for me to also say '10' right after her when I was obviously feeling so much worse. I once told a triage nurse 12 1/2 and she thought I was joking. You've no idea how badly I hate that 1-10 pain scale. That's why I invented the Princess Bride pain scale. If a doctor or nurse has seen the movie, they have more context, and then we can talk about me being in the 30-40 range on a decent day. Just because I'm able to function and smile doesn't mean my pain level is a 5. Actually crying driving in to appointments rates a solid 8, and from there it's minutiae to me. You know how on the earth timeline of 4 billion years humans have only existed in the last seconds before midnight? That kind of minutiae. So much pain context is crammed into those last 2 digits. I'm like if there can be 50 words for snow, I've got a hundred different phrases for particular pain levels if they're looking for context.
I can handle big loads of pain. Some days you feel like body slamming walls and trees trying to make it all shut up, other days you curl up in the dark and just keep everything really quiet. Those are rough days. Really rough days are me not caring if I break something and it's all I can do not to break windows out of sheer need to smash stuff just for distraction. I can totally see how people just lose it. Nasty days are just past that, where you if touch me, you die, and one look will wither your soul and you'll think I never loved you at all because it will be so awful. Really nasty days are hanging on in hurricane days, the kind of days where it's so bad that even breaking your legs or slicing yourself up barely ripples your attention, when even the words 'self harm' bring out maniacal laughter because it seems so tiny compared to what you're already going through. If I weren't in this amount of pain, I would totally be a self harmer. And I know several self harmers, so I'm serious saying this.
But the really worst days are the ones where it's not even that bad and your brain suddenly goes through a chemical dump, and there's not one thing on the planet you can distract yourself with that could keep you from doing something really stupid, so you reach out to hang on to other people and hope to God someone's available, because you cross that blurry line into unreal numbers territory, and you can't be sure what you're doing is really what is happening because your brain is so tired and so fried from all that overwhelming screaming you went through for days on end that nothing seems real any more when it finally quiets down a little bit.
~~~~~~~~~~~
I stopped there for awhile to get a lettuce and turkey wrap and some cheese. The prickles and itching are finally calming down. Really thought this post was going a different direction when I started it. Oh, well. I could delete all that or just let it stand. I'm sure I spoke for a lot of other people feeling frustrated with spoonie stuff, too.
I'm going to make it. I can do this. But I need a nap first. I feel like I just swept out my soul, and those crazy stacks of old EOBs will be next.
~~~~~~~~~~~~
Sometimes naps don't work at all. Since I'm breaking so far out of my ruts lately, I decided back to school means I'm getting new stuff in my house, too, so I laid there in the dark scrolling around my phone. I never do that. I so rarely shop at all, this really is breaking out big time for me. I burned out really bad after doing retail for 5 years, so I just never browse unless I really need something, like replacing a crockpot. I decided today I need new sheets. @bonenado bought the last set at least 2-3 years ago and I've never liked them. So now it's my turn to torture him, lol.
And I've been wanting one of these for years. I bet Bunny will think it's awesome.
Also looked up the tracking number yesterday on the sunglasses I ordered last month (I tweeted about them), yes, they're really coming from China. They're super cool if you want to check them out. I'm surprised how little I paid for such nice glasses, plus free shipping, so no idea how they're even making money. Well, I'm assuming they're as quality as they look on the site...
Oh, now I'm yawning. Going to go try this again.
~~~~~~~~~
Nope, just not one of those days. And then the second I get on moc, someone is getting banned for using xray, so it's a day for everybody, I guess.
Got a call to make an appointment for next week, totally forgot I was submitted last May to be a genetic candidate. I'm old enough now with enough family history to get a consult to see if I'm likely to get breast cancer. I go in next week, guess we'll see how that goes. I've been on and off alerts all over my body since my 20s, nothing ever shows up. Really don't know if I'd survive treatment very well, @bonenado already decided a few years ago if I ever test positive he's just going to take me to mayo or something. ~~~~~~~~~~~~
TODAY.
click for fun glitter graphics
Nothing special planned. Maybe I'll go pick up a couple of filet mignons and seasoned veggie grill mix and a tiny cheesecake for supper.
Got a little glum there yesterday, didn't we?
If you haven't figured out by now why I'm already a Doctor Strange fan, then you don't know me at all. It has nothing to do with Benny C because he's made tons of movies I've never seen and I don't go around watching all that just because he's in it. It also has nothing to do with Sherlock. Just for a second, imagine Stephen Hawking watching Doctor Strange. Yeah, that. Lotta people in this world gonna be latching onto this one. Continuing to use our brains to keep surviving when all else fails is what it's all about, kids, and you know I'm sharing the brain glitching part so some of you know we can still do this.
Aspienado in lifelong nerve fail. Wow, just summed my entire adult life up in 5 words.
Trip to town this morning for my annual date with another man on my anniversary. This is follow up with primary, thankfully early because they'll undoubtedly issue heat index warnings again. My head is way better now than Tuesday, so I'm adapting back to beta blocker just fine. He's not going to be happy about my blood pressure going back up a bit, but I think the thrill of me feeling like getting athletic shoes back on for some real exercise will outweigh the compulsion to hit a target number. I think once I get moving around more again I'll feel better about moving forward.
