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Friday, June 24, 2016

you're my lobster


I started this yesterday because I felt so crap I couldn't watch TV or do anything or even lay down for awhile and I was doing my best to focus and concentrate on doing something through pain, so unless you're desperate for something to read, save yourself and flee this post.

There is a place on earth worse than the DMV, and that's the social security office.

I saw a lot of all kinds of people today. I sat in a hard chair for nearly 90 minutes waiting for a turn I thought would never come, and I listened to a guy behind me talk nearly the entire time about everything in his whole life clear back to the 90s. I know his family ancestry, his work history, where he banks, what the inside of his home looks like including detailed descriptions of his furniture, where he actually lives, a number of people he's met, how various family members died, whole convos he's had with landlords, and through the entire thing he never once mentioned a spouse, children, or pets. Not once. He never shut up for well over an hour and never once brought up a relationship. And that whole time I couldn't tune him out because super aspie's so aspie, and the pain running along the nerve paths in my shoulder and neck ramped up into a delightfully nasty headache, and by the time my name was called, the people near me were actually leaning away, I'm sure probably because I looked like that one person in the entire collection of mentally and physically disabled specimens that might actually pop a cork and have a real meltdown. I did my best to sit still and not look like I hate the whole planet, because I really don't, it's just the pain, but I was this close to tears and the only thing holding them back was allowing myself to be pissed that the guy just wouldn't shut up.

I was the scary one in the room. The quiet type who visibly struggles to hold back whatever is fighting to get out.

The guy who finally called me back was awesomely nice. He assured me that I had the short form, and that simply mailing it back at all with any kind of noted touch base with a real doctor in the last 2 years was all they wanted, because so many people get their disability settlements and disappear. He looked up my stuff and was surprised I got the short form, because at this stretch of time people usually get the long form, so he looked some more at the notes about my disability hearing and was impressed and said no wonder. I said yeah, I'm one of those that got it on the first try, both cognitive and physical, and part of the visit today was making the mistake without supervision before I mailed it off. He assured me again it would be fine, and not to worry about that triggering a more lengthy reevaluation or stopping my payments. At first I was a little confused by the continued reassurances, but I guess he didn't understand- I was there because of typos. I told him I wasn't worried about another evaluation, hadn't even thought of losing the financial support. My medical file isn't growing any thinner. I was there because my cognitive disability compulsed me to freak out about typos. I'm an autism spectrum freakazoid who can't live with something written down wrong on a piece of paper. I have piles of spirals all over my house full of scribbled notes, years and years of spirals, and no matter how many notes I write and how many blogs I have, I still make stupid mistakes on simple forms and never even notice. There is something about filling out forms that shuts my intelligence center down. I'm professionally trained to assess and care plan and tech talk, but hand me a form and all I have to do is write down a number and sign it, I get it wrong every time.


I don't say that much about what really motivated me back out on the webs. I've mentioned just missing being in an accident that would definitely have been fatal, but I barely mention the stuff that happened afterward, or all the stuff that was going on around that time. No one saw my world blowing apart.

You know how I start time skipping in June and think I've missed the 4th of July? It got really super bad in 2012, which I've mentioned, but the irony behind it is all the real life stuff I was juggling with the people around me by the time the 4th really arrived, and all the stuff that blew up over the next couple of weeks among them afterward. I handled so much stress for so many other people, and no one had a clue what it was doing to me, or that I'd already had what most people would call a nervous breakdown. I'm nice enough not to spill too much for public, but all the same, that was a pretty tense tightrope at first.

I am here because I started blogging publicly. Bluejacky blew up with one survey after another that summer, grandfortuna came back out of oblivion, I reopened new twitter and facebook accounts, and I held on for dear life staying as public as I could with a plan I devised, because this is what my real life was feeling like.


I saw that full screen in a theater, and I'll never forget how shocking it felt to suddenly realize what it must feel like being the aliens crashing onto an unfamiliar planet. What only one person at the time in 2012 actually knew (I confided in @bonenado) was that I had reached a place where I wasn't sure I could stop myself from a compulsive leap into the fuzzy unknown, because I had so little grip on what was actually reality for a few weeks that summer, and I didn't want to be labeled a suicide just because my head was melting apart. I might have been vehemently against my own suicide and still not been able to stop it. I had to create another reality to be present in, to show up for. I had to come back and be my avatar. Sometimes it's ok to escape real life like that, as long as I stick to my preset guidelines and focus on my goals. Every bit of this was supervised by my psychologist. What those of you who've watched all this have seen is genuine live blogging through very real crisis.

My ship had already gone down years earlier, and although it was a somewhat controlled crash, it was much more devastating and destructive and very pre-psychologist. That crash lasted for 3 years, and nearly everyone who was in the Lexx fandom back then had no idea this is exactly what it felt like was going on in my real life for that long.


My whole life has been a series of crashes. My car wreck is obvious, an actual crash. I've talked about the monitored double hormone crash in 2012. I've been through some debilitating systems crashes that nearly destroyed me physically and some devastating losses that broke me emotionally, the bulk hitting in 2004 nearly all at once. I've crashed off addictions like alcohol and medications. I've been through a very long string of friendship crashes. If there is anything I know how to do, it's survive a crash, but knowing and experience doesn't make the next crash any easier.

What's different now is I'm coming out of all those crashes. I've been doing physical therapy for 4 years for old injuries from the car crash. I've been following a whole different lifestyle the last 5 years for the plethora of chronic illnesses that crashed me. I've been seeing a psychologist for 9 years now after the several really big emotional crashes (losses) happening all around the very physical crashes. Maybe I'm almost ready to talk about the real real stuff that goes on in the middle of crashes, like how I keep kicking when I know another crash might just be the last if I don't keep hanging on.

While some of you pinball between trying to figure out the disparaging meaning behind mass shooters and the sadness of suicides, I'm treading what feels like an ocean full of gunships and subs, helos flying over, on alert for missile launches and air strikes in all directions. It's not so bad nowadays, perhaps going public really was the life preserver I needed in all the chaos, because I haven't been so immediately and continually summoned by people around me nearly so much since then. The pressure has definitely lessened, and I've been able to start processing my own stuff instead of constantly swooping in for others blowing drama into crises. One of my rules for public blogging was it has to be about ME. My stuff. Not their stuff. But one of the clauses is that when people intersect in my life, it becomes my stuff, doesn't it? I think that's why several people in real life suddenly backed off. We've got some spectacular laundry that I keep saying would make great TV material.


Something about sitting at the social security office has triggered all this, so I'm trying to work through it here on Pinky blog. This post is getting way longer than I intended, and I'm not sure of the direction, so I'm just letting stuff flow out.

My mom made me learn to hold things in growing up. If you have an autie/aspie child and you are familiar with meltdowns, imagine what it would take to force that child to learn to never display their real feelings. (Some of you just did a quiet omg what happened in your heads.) Imagine someone like that under a great deal of stress holding everything in for many years because they'd been pressured all their lives to do that, maybe by another person who'd been pressured all their life to do that, maybe by someone who was just plain mean or ignorant. Imagine that you have no idea how many people like that exist around you on any given day. Unless they talk nonstop about their lives like that guy sitting behind me at the social security office, you have no idea what kind of person they are. They can be clean and dressed decently and quiet and polite and you'd assume that person couldn't possibly do whatever it is that people say surprises them. You'd never see it coming.

I'm not the only one in this world who lives a normal life in front of a lot of bad memories. I can't speak for other people, only for myself, but as I stand up and speak for myself, others may feel like I also speak for them. Inside of me there are flames and horrors and screams that no one ever sees. There is cruelty and meanness and great swaths of sadness that could swallow a universe.

But inside me there is also an ability to let it all go in an instant of distraction, or a few moments of quiet. All it takes for me to survive is a time out. I time out as often as I can as long as it's safe for me to do so. I did my best to time out over and over at the social security office today. It's so easy to click-lock my eyes onto sunlight filtering past leaves or blinds, or an odd color or pattern on a wall or floor, but it's really difficult to do that with rows and rows of a hundred people lined up to face each other. So many faces in the way, trying not to see each other, feeling out of place, looking anyway and recoiling or pretending to smile. I'm usually pretty good nowadays about being able to look up and smile, but I just couldn't yesterday, and I couldn't just let the pain dictate how my eyes meet other eyes. Humans are so good at killing with their eyes. I was in kill mode. For most people, that's simply just a hateful look. For some of us, it's a warning that meltdown is imminent. The last thing other people need from me on their own bad days is a meltdown. I've had a couple of public meltdowns, but the disclaimer in me needs me to say I was legally stoned out of my mind on pain meds and muscle relaxers and still so terribly miserable, and I couldn't stand looking back at myself behaving like that. One of the big reasons I cleaned off prescription meds is because I don't want to go to my grave with people thinking Thank God that's over. It's an awful thing not to be able to control your behavior and realize it makes people wish you weren't around. I have a mean enough personality without meds as it is. When I lost my best friend over this stupid conundrum, I spent a year grieving and then set out to change my life.

I have to insert a disclaimer that on good days, I can carry on convos with strangers like we're best buds, as long as it doesn't last too long, but if someone I know is with me, they get squirmy because I am a little too friendly, and I think it gets creepy or something. Like, Scott pulls me away and steers me clear of people handing out pamphlets on my talky days. I'm creepy. You'll wish you never handed me a pamphlet.

I would like to describe what a time out feels like. It's a literal time out. There is no time. Even just a moment of time out feels like a different place, and I'm really there. It's not an imaginary place, I don't invent it or visualize going to it. It's just there. It's always there. It's like the flip side of here. Here is always here, there is always there. When I am there, it's just me, no one else. There's no hint of all the here I disengaged from. Sometimes I can keep both open, but usually I space out to the point of completely missing what's happening right in front of me. I imagine that makes me look fairly mental. It's kind of a joke between me and @bonenado. If I'm spacing out while he's driving, it's a very good thing. If I'm spacing out while I'm driving... not so good. I have to stay vigilant and self monitor when I drive. I've tried telling doctors I need to legally become a nondriver, but so far no one has taken me seriously. I'm a great driver, no accidents for decades, no problems or tickets, but 2012 broke and I haven't 'come back' in my car yet. That year, though, I did have a good delayed Tourette's related PTSD in my car convo with my psychologist. What super triggered the old crash memories was flying. I came back and couldn't make myself touch my steering wheel for a solid month while I was driving. I haven't flown since.

Back to time out. There, light is a thing. Colors are things. They don't need to be part of anything else to be defined or to even be. I go into light and colors a lot. Colors are like a different language. I'm not talking about frequencies and vibrations, but maybe I am. Maybe I can see the sciencey things differently in my head. I get other dimensions, too. If I let go and don't think about it, I can watch how other dimensions work. I've never been able to describe what I get in my head, and I realize it's because they need to be described in relation to something tangible, so there's no context for sharing. I recognized fractals when I first ran into them because I'd played in my head like that when I was a kid. I recognized Smale's horseshoe because I think about that kind of stuff all the time in my head. I was thrilled when multi universe theories started coming out because I'd already played with the 'fabrics of spacetime' in my head. Parallel worlds and alt universes are think tank toys I played with growing up. By the time string theory rolled in, I was already past turning music into light into objects into effervescence in my head. Once in awhile I'd try to describe the cool stuff I could see, but people say things like "You think too much" and shut me down. I wasn't exactly thinking, I was free associating through thought. Thinking is focused, time out is just floating through the nirvana of all the things. I've never told anyone light can talk, and I don't mean like we talk, but I bet science would back me up if I said it differently. That kind of stuff.

I would never be able to talk for a solid hour about my family history and work history and my bank and my furniture and the convos I've had with strangers, but it's a fair bet that guy from the social security office is on a spectrum like I am. He's a living recording machine and I'm guessing he can't stop broadcasting long enough to develop relationships, so he fills his voids playing his recording to everyone he meets. Maybe he's incapable of timing out. He mentioned being able to go days without sleep, even on handfuls of sleep presciptions, yes, which he named off, dosages included. Whatever his soul is on this earth for, he has done it all through a brain hard wired to record and play back everything that's ever intersected with his life. What impressed me most was he seemed so nice and sociable in spite of all that, like the absence of time outs didn't phase his demeanor while he could rattle off every bone and cartilage and process in the human body, there was no hint of ill will or even opinion, just the constant regurgitation of experience. That doesn't mean he's not a ticking time bomb, and eidetic memory doesn't always equate to being capable of advanced theoretical discussion, but his brain chemical cocktail was obviously way easier to live with than mine. The more he talked behind me, the more I slid into hardcore shutdown trying to stave off meltdown, and even though everything he said was actually interesting and pleasantly shared, it was all I could do not to turn around several times and ask him if he never shuts up, and knowing that could be part of his disability is the only thing that kept me sane through it. I'm pretty sure I'd have found him delightful as a people watching study if my pain level hadn't been shooting holes through my head.

~~~~~~~~~~

Ok, this is today, Friday.

That was a lot of stuff!!!!

Now we need way different stuff. I've probably shared this one before, but bless the fans who do this stuff. You save me like nothing else in this whole world.


K, I've got stuff to do, need to get order pulled together before Bunny spends the night tomorrow, get back on my work track, the usual basic stuff. I just wanted to say, I'm still here. Despite how it looks sometimes, I truly am grateful for every single person who has ever interacted with me online, and you guys need to know you've been meaningful enough to help me stay focused on more healing and hanging in through all the pain, both physical and emotional. I made a Pinky promise not to disappear off the webs again, and that's a real thing. Yesterday was really hard again, this whole week, month, and year has been really hard again, but I'm on a calmer ocean nowadays and I just need to remember to touch base and be the avatar I created. We can do this.


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