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Currently (2023) my most updated blog is everlasing.

Spaz is a useful side blog for sorting other stuff out.

Showing posts with label brain function. Show all posts
Showing posts with label brain function. Show all posts

Thursday, May 27, 2021

thoughts about George in his broken brain in Sublime (2007)

This is a repost from my PinkFeldspar blog. It's originally part of a movie review, but so much of this section is a reflection on what it's like living through what I call 'brain fail' and 'glitchy brain' that I think it needs to go on spaz blog where other medical posts are collected. If you get distracted and want to see more about this movie in general, you can find it among my #TomCavanaghWatch posts.


This is super random like a writing prompt and not intended to be part of the review, and is especially super spoilery if you haven't seen the movie yet, so go watch it first before you wander back.



I've blogged before about movies / TV shows and characters being how we emotionally connect into stories that we personalize while we deal with or process our own life journeys. The movie Sublime that I have reviewed recently has been one of those uncanny connects for me.

I spent years publicly blogging my own 'mess' of 'glitchy brain' fail that began, in part, in 2004 with what my doctors assumed to be a viral infection on top of years of autoimmune challenges. That is one of the layers I've been processing through. When this happens to an already fractured mind from childhood trauma and a lifetime of PTSD, I'm here to say it can be pretty devastating but survivable.

I'll jump right in. When George asks to be taken on a tour of the broken East Ward presumably under construction, he doesn't realize he's surveying his own brain fail. I've had numerous dreams like this over several years, it really does work like this when you are trying to figure out the problems that you can't see and your brain starts helping you consciously assess internal damage from the point of view of an entity that isn't human like you are, because it's existence is lived as an organ that processes data. Oddly, brains can't just type us notes, so they 'simulate' scenarios. If we break it on down, a brain as an organized entity is itself made up of numerous selves that continually work on construction and vital systems management protocols, like securing and shipping energy and oxygen. When shipping and/or nutrients are interrupted, the entire system can plunge into massive fail.

A brain is a living thing that wants to work properly. Like a machine, it runs automatically without our cognition, but like an AI, it connects to us and talks to us in dreamscapes, riddles, visuals, experiences. Our brains can interact with us as a separate entity from us, yet still be one with us. Consciousness, arguably, is not completely dependent on the brain, although the brain is how our consciousness is able to interact in this world reality we see around us with other people in it.

During this tour of the East Ward, George chances upon a room full of files, a sort of archive of information. It is organized but the version is outdated, a hard copy backup of a digital system. He finds his own file with his name on it, and in the very thick file he sees hard copy of many organ and tissue assessments. This is literally what the brain does, in one sense. Our brains know everything conceivable about what goes on in our bodies, that is their job. When there is brain disconnect, or fail, that information can stop being updated, or even be lost, and the brain automatically fills it back in with real time information gathered from what we'd think of as diagnostics. I went through this when I went through central nerve fail and memory glitching. I could feel this happening. Sometimes it was painful, most of it was maddening from a conscious aspect. I didn't know what was happening, but over time, with very patient inner communication, I was able to consciously piece together my own archive of thoughts and reflections about what I was experiencing as my brain was working on healing.

Let's talk movie clues.

When George is arguing with the care team (in his mind, since the IV bag fluid is milky white), the date on the file he found, according to the medical lawyer (a brain perspective trying to share information to his consciousness), was Feb. 29, 1947. That was not a leap year. (That had also changed from what he saw originally.) But there is also a name connected to that file that George thought was his, that actually of George Spelvin, if I heard that correctly (I could be wrong, I suck at transcription). If this is the case, then the pseudonym and nondate are key clues, along with the unidentified bandaged man that George thought he saw murdered, are really himself as an empty slot. The file contents are his own brain content being interpreted, the file identification shifts between the time he discovers it and later argues with the medical lawyer. His 'evidence' is slippery, and his brain is filling in the lawyer's words with substitute answers. Is his brain updating in progress, indicating more loss? Or is this like a dreamscape where hope plays tricks and information is slippery anyway? In any case, his brain itself is aware of loss, but communicating that into his consciousness isn't easy. George is in full fight or flight mode by the time he seizes out during his brain slamming another fail simulation at him, his necrotic leg. That scene is a giveaway since necrosis to that extent takes time. The brain is screaming that it cannot find his leg, it cannot connect and assess, but in George's consciousness (in his vegetative state), it becomes interpreted as a diseased and then missing leg.

The mystery of problem solving inside a broken brain can send a person hurtling around an emotional rollercoaster. It's hard. I was very struck by the opening theme by Bird York, Have No Fear. It's nearly impossible not to have fear when your nervous system is part of the breakage. It's like living inside downed wires and massive grid damage when you can't move around correctly or easily speak what you mean. It's like feeling trapped in a maze of confusion, so much fail going on and no way to share the fear in a way that nets back badly needed emotional support. And sometimes that support is so misunderstood in all the confusion that one can only recoil back into solitude. I have thankfully never experienced a vegetative state, but at one point I made the decision to wrap my mind around preparing for the what ifs of a complete communication sever. The intuitive response is to fight, that can translate into combative patient and poor treatment, and I chose to bend my will toward remaining calm, accepting, and pleasant, trusting what I could not trust. That is very hard. (The key to accomplishing this is to, as George found, wrestle one's demons, face the truths inside that we refused to see, and acknowledge our life fail of allowing bad things to happen, very much like a life review.)

Add to all the confusing emotional rollercoaster the jumble of real life still coming at you, the torments and persecutions of judgments from people all around you, whether those are perceived correctly or not. George reliving memories of his birthday party, assuming he was even remembering correctly, was part of the big puzzle, many pieces that needed reassembling before he could cognitively understand how to take action months after a medical accident. To recognize that he had this power to make a decision was a giant lightbulb after so much misery.

One thing this kind of life challenge wakes you up to is information. Information in general from everywhere, everywhen. Time has no meaning when one is compiling information trying to restructure. Sorting things like timestamps comes later. I personally developed an obsession with timestamps because I lost my sense of time. What I discovered was compiled information.

Using twitter as an example, I am unable to keep up with real time linear interaction flow. For a long time I couldn't keep users straight, much less their personal information that made them unique. I learned to use the twitter search bar with keywords and hashtags to pull up a time order for users and particular thoughts, and I was able to remember the timestamps for some reason. I noticed that a person might say 12 different times over 4 years how terribly sick they were, and then at other times say they never get sick. In their linear experience, they might not remember, while they are in a vital healthy phase, regularly picking up seasonal colds that last a week. I could easily pull up their histories and see that while we are in linear experience mode, we are in the moment and don't pull up all the files. Once we step out of linear experience mode, we can see all the files more easily. Well, I crashed out of linear experience mode early in life when I started dissociating, and parts of me are 'research hounds', obsessed with finding and knowing information for various reasons. Add a 'brain crash' to that and I felt like I simply dropped out of humanity synch with world time. I used social medias like twitter to see the rhythm and try to slide back into it (like jumping into an ongoing jumprope game, perhaps). I'm still not very good at that and eventually let go of trying to keep up in real time. I live in my own real time now.

We cannot explore all the files this way until we step back from in the moment reacting. George tries to react in the movie, but he's lost his moment and can't find the way back to that moment. He's stuck on a moment unaware that months of time have been passing, trying to problem solve what went wrong with very minimal access to information. He can see the broken parts, and he can see the diagnostics, but he can't see how he himself fits into that.

What he didn't expect to see were the jagged details of collected memories exposed in the brokenness, his demons, if you will. Evidently, George was very aware of the political divergence going on around the world that supported his real life success. He was aware of the human abuses going on that supported capital gains in his world. He chose not to 'see' them while he was in the moment. He believed he deserved his success because he had earned it himself. Likewise, he had chosen not to really 'see' or be cognizant of how his wife was feeling. The simulations are valid communications about his fears and feelings and situations, but since he cannot translate them logically, they create panic. His fear grips him and then all he can think about is feeling trapped and wanting to escape.

I can say that level of vividness is very real with 'broken brain' stuff. It's catastrophic to realize we are stuffed full of information that we don't even know we have. All our brains are absorbing all the things all day long. Good things, bad things, all the things. We might consciously choose to focus on our own interests as the days go by, but that doesn't mean all this other information collecting going on constantly is being deleted as overage. It's all still there, and it's all important. Why are things we ignore important? Good question, especially since humans seem to universally experience compelling life review phenomena.

When I see George really noticing these political atrocities among his jagged broken East Ward, I see him realizing the reality of what hadn't been real to him, real people, real lives affected in the kind of life he had been constructing for himself. Whether they were actually fallout from his own financial decision making is probably beside the point, because who could know that. In general, however, there was a connection, he knew it was all connected, and he chose in his linear in the moment life to not see those connections. He turned away from taking responsibility. That this is affecting him so much in the dreamscape simulations is a very strong hint that he went out of his way to stifle these feelings in his everyday life. He stayed busy making money, probably nightcapping his way through his marriage after long days of wheeling and dealing. I can't judge since I don't know, but it's looking like the rude awakening after the brain fail was a seething pile of guilt he managed to lock away for years.

How one heals from a broken brain, assuming one has that option (like me), can involve a very deep dive into cleaning out one's soul. Pulling everything out of the closets of the mind, sorting through it all, repacking and organizing- this is all inherently part of healing when a mind scatters into pieces after the structure crumbles. Restructuring is rebuilding. I think at one point I compared it to reassembling a building piece by piece out of the original materials without a blueprint after it had been blown apart. That was so many years ago I can't find which blog I wrote that on.

:edit: Found it"Like someone reconstructing an earthquake smashed mansion brick by broken brick without a plan, I am reconstructing my brain today. Like someone who lived in that mansion, I know I lived in my brain, and I know it's all still here. So I glitched again, so what. It's not gone. I just have to go over all the little connections and see what needs to be plugged back in." Dec. 27, 2012

Having our consciousness interrupted from illness or injury is a terrible thing. I compared losing my intellectual capability to beautiful people losing their good looks to some calamity, which we all know can be very devastating. I became very dumb and spent years crawling back from that. I consciously could not logically piece together my own history. I've had to wait while my brain heals bit by slow bit.

In George's case, there was no more healing. Nothing more could be done to cross back into the 'real' world of linear in the moment with his family. He had healed just enough to become minimally aware that he had a choice whether to stay or leave. Whether he was truly cognitive of his family around him is unclear, and as messed up as his awareness was anyway, we'd still only be guessing at what he truly was aware of at the end. However, he did seem, inside his head, to be aware enough of himself to reject remaining in that state. Even on life support he managed to 'escape'. There would be no way to measure if he truly did that or if his brain just stopped working, since he was considered to be effectively medically unable to ever respond again.

I could be like Fangoria and talk about Sublime's "health scare plan", but I'm not going there. I do think it's valid, though. Click to go check out issue 261 published on 9-28-19.




Monday, August 18, 2014

a day in the life

These are highlights. This is how blogging has helped me get through the 'brain crash', which happened in 2004 during Bell's Palsy (which is totally nontypical but may be related to being a carrier, as we shall see) and grew increasingly worse until it started getting better around 2012-13, and is still improving. Between the confusion of brain fog and memory deficit (which was a new thing to my eidetic memory), I was unable to keep things straight for a long time. Being able to go back through private blogs not only helps me remember stuff, but why I made decisions this way or that. Blogging made it possible for me to watch my progress through a plan to get healthy again, physically and mentally. It's been nearly ten years since the brain crash (first signs in Sept 2004, but puzzling because no visible signs of stroke, tumor, illness, or trauma.) Life still goes on. I'm so glad I kept a daily log because I honestly don't remember most of this until it is triggered by reading it back to myself, then I go Oh, yeah... For the curious, I'm a Lymie (first infected in high school) with Epstein Barr (from a wild mouse bite, yeah I was stupid and picked one up by the tail when I was a kid) and had a bad Bartonella infection as a kid, very ill with the measles in high school (probably responsible for surgically corrected arrhythmia years later), nasty car accident, autoimmune flare ups, severe fibromyalgia, a nasty months long systemic CMV infection in 2007, declared completely disabled in 2008, but because I'm a stubborn aspie, I'm doing everything in my power to get back off disability. It's a slow climb up a steep mountain, but I believe blogging is the key to planning, the climbing gear, if you will. They say life sucks and then you die. Well, I want my life to suck as long as possible.

August 18, 2007

  •  
         Boy.  That was a tough 5 minutes after they pulled out.  Me and Twinkles bawled our eyes out before we went back in the house.
    My sploit is off to Texas today to her new life with her fiance.  Time to start her new job, look for an apartment, get married…
    This was a small part of the loading process…  Boy, my camera is getting bad.
    Of course, the sploit wasn’t weepy one bit.  Look at that grin!  She has techno-JOY!!!!  Ok, private joke.
    It was a little early for Twinkles, but she was a real trooper, walking in the door at 6 a.m. in time for bacon and good-byes.
    Thodin.  The yucky green car that has been part of our driveway for years…  Today is probably the last day I’ll ever see Thodin again.  I think they have plans to trade it in later.  For some reason, this picture gets me more than all the rest.  I have so many memories of moving the sploit to college and back in Thodin.
    “Ready, Houston…”
    One more quickie pic of my baby….  *snif*
    Backing out…
    Now Twinkles is crashed on the couch until it’s time to go to work.  I’m feeling a weird sort of blue on my big stupid pills.  The chicken is cackling.  The dryer is going.  I am trying very hard not to think about how badly I wanted to be able to go on this caravan trip with them.
    *sigh*

August 18, 2008

  • Finally starting to feel a little more normal, yay!  Finished the antibiotic this morning.  The body spasms are quieting down.  Have been sleeping a LOT.  Just about caught up on the usual chores. 
  • Watched the Two Coreys season finale this morning, had it dvr’d.  I couldn’t believe all the pills Haim was on.  They didn’t name them all, but after dumping several other bottles, he argued to keep the vicodin (label said to take 4 a day) and the xanax.  Geez, dude.  I can barely handle 1/2 a vicodin at a time, and I have serious medical issues.  Any time I’m offered xanax and valium I turn them down, point blank.  I fear how hard I’ll work suddenly moving furniture around by myself if they knock the pain away and I have no inhibitions.  Good way for me to wind up in the ER.  You know, I never realized until I watched this season of the Two Coreys that I really am a seasoned drug abuser, under the guise of fibro and lupus.  I’ve been fighting to get off the meds for several years now, and dealing with withdrawals and the shock and recovery my body has to go through on top of being ill, and I’m convinced that the world of chronics and terminals is a serious issue of medication abuse, sponsored by pharmaceuticals, insurance, and the poor doctors caught in the middle.  When I’m on all the same medications that serious drug addicts wind up going into treatment for…  Just because I have an excuse to take them doesn’t mean it’s ok. 
  • Scoped out a few sites on epstein barr.  Good lord.  No wonder my doctor was so quick to give me that handicap tag.  I didn’t realize how complicated that one is, and it’s just one of many wrecking me up through my life.  I know I seem pretty aggressive sometimes about digging up info on stuff, but in some ways I’m still pretty naive.  Here I was apologizing to my attorney for wanting to start up a disability case last November when I was so ill I could barely stand up and walk a straight line.  I blame the Asperger’s, I guess it just takes awhile for things to process and really hit me.  I fought the disability for so long, not realizing how much support I would have had even 20 years ago.
  • Haven’t talked to my dad in nearly two weeks.  Keep thinking I should call and make sure he’s still ok with Mom’s care at the nursing home, but something in me keeps resisting.  He was calling me nearly every day and sometimes crying and angry, and I had to keep smoothing things out.  Scott’s mom is now driving herself all over creation every day, gets the boot off her broken ankle in about a week.  She has stopped calling me every day.  Well, I take that back.  She called me a few days back to ask if our land line phones were out from the rain and I said yes.  She called back the next day to ask if I’d called in to report yet and I said no.  (I’m very literal.  If she’d wanted me to do the calling, all she had to do was ask.)  Then she called me the next day about the wiring in their air conditioning, and once she found out Scott was available he started getting all the phone calls. 
  •   I don’t do phones well.  I don’t do other people’s ‘panic’ well.  I’ve had to get through so much on my own without any kind of support at all, it’s incredible.  It wears me out terribly, as an aspie, to have to handle other people’s stuff.  I feel like I’m still recovering from all that constant problem after problem after problem this last month.  On top of my own problems.

August 18, 2009

Family meeting at the nursing home set for Sept. 1st.  I have so many feelings conflicting around even just the need for this meeting.  I don’t even have to take sides to dread this.  I’m not even on a side.  I see both sides, I see that both sides have blinders on and won’t budge, and I see that it all boils down to me being the main arbitrator because I’m legally in charge of both parents.  I just wish my dad would stay home more.  He’s a good guy, but he just needs to relax and have more of a life than hanging on every breath Mom takes.  If I had known Mom would make it this long, I really should have gotten a lawyer on this years ago.  And her own private room.

Scott picked two Walmart bags of tomatoes last night, half from the big Shop of Horrors bush under my kitchen window, the other half from the bush that fell over two months ago in the flower bed.  When the coffee kicks in (not sure it this will work, the first cup wobbled me back into bed) I wanna get a cookie sheet out and roast a whole bunch to freeze back in little bags for future batches of settler’s beans and spaghetti sauce.

@ 11:30 a.m.

What a long day.  I’m in slo-mo.  It’s so bad that I wrote down that I took a pill, and 15 minutes later could have sworn I never actually took it.  Just writing it down doesn’t mean I took it… dang it.

And I can’t go back to bed because I finally wandered in there and stripped it.    It’s a good thing I’m so far ahead on food, because I don’t think I could cook a meal from scratch today.  I’d wander off in the middle of something and forget I was doing it.

 @ 1 p.m.

I’m willing to entertain the notion that I’m having some depression.  Took 4 hours to get that cookie dough mixed.  My brain shuts down completely every time I think about either 1- my next doctor appt, 2- the nursing home meeting, or 3- the disability hearing.  Ugmo.  Eating a warm cookie.  It’s helping.  Put half the dough into the freezer for another day. Watched a new episode of The Universe, they finally made a new one.  I would sure love to lose myself in just thinking about stars and galaxies. Decided to throw a good *what the heck* to the wind and threw mine and Scott’s pillows in the wash.  Scott’s is line dry only, but I’m going to throw it in the dryer anyway.  If he winds up sleeping on a ball, it might prompt him to go buy a new pillow after two years of saying he’s going to buy a new pillow.  I have no idea how old this one is, but it’s gross, and I’m tired of waiting.

August 18, 2010

  • Today is chiro and the grocery store.  This will force me to get a shower.  I’m having the hardest time getting more than 2 showers a week in this month.
    That meaty soup yesterday turned out really good.
    No brain yet this morning.  See ya.

August 18, 2011

    I scanned the crap outa the wedding book before Scott took it back this morning with our order, which is now only for show so other people ordering pix won’t think we’re awful parents, because we could easily print them out on our own photo paper now.  We’re just getting 3 pix, of the whole family, the 3 generations, and bride’s parents with the couple. As we were going through the book and noticing all the other family photos, Scott couldn’t help noticing how often *** and her current guy showed up, and how few pix we were in, and it became obvious that Twink didn’t make it clear with the photographer exactly who the family ~was~….
~~~~~~~~~~~~~~~~~~~~~
My perfect bow made it in the album.

August 18, 2012

    I really think this weird bladder spasm thing is my lower back kicking off again. Been having problems with it ever since all the mess started up with Andy, then gram, then Scott’s stuff, and now I’m having trouble moving and bending again, and starting to get pains down my legs. Might have to start back weekly with chiro. Also thinking about getting back into core strength training for my spine. (retrospect edit- it did turn out to be severe fibro and was only relieved with many weeks of ASTYM therapy over several months- I can't even begin to describe the pain and the way it referred around nerve centers)

August 18, 2013

    Day 7 of norco withdrawal +_+ 
    I think the worst should be about over. Been a zinger week, nothing like going through opiate withdrawal on prednisone and round the clock benadryl. I’ve lost 3 pounds, at least. Hitting coffee a little early. 
    Tonight is utterly sleepless, only 1 1/2 hours so far. Slept real good earlier in the week, surprisingly, probably all the extra benadryl, even though I was wired to the gills. 


August 18, 2014

    *** got back home today, will probably retire now. Scott took his mom and Twink out to see him come in. *** got married Saturday, and after they were pronounced and kissed they locked light sabers. I heard her blade was red, which is Sith, lol.
    I finally got a couple of weekends off in a row, and dang if I didn’t get in my bedroom with a forklift. Got that stupid dresser and armoire OUTA there. Scott says I can have a new dresser any time now, so maybe over this next week I can finish up the piles of stuff that have been amassing again since Twink got pregnant. I’ve been using a broken drawer on the floor for at least two years. Was supposed to get a new dresser a long time ago, but Twink getting pregnant and piling in here (rather her here than some place stupid!) and then moving around and then popping the kiddo early practically on top of me having surgery, and then keeping us busy every weekend (and more) since then, this whole last year has been like riding out a string of tornadoes. We’re exhausted. Anyway, I caught a second wind and boy howdy, my bedroom is getting a very badly needed makeover.
    My nerves are quietly going into shock. Here we are again, a year later, not sure whether my blogs will disappear. Was hoping to have a little money this fall, but still not sure yet about Xanga renewing. I need to get this book wrapped up. I’m glad I didn’t meet my last two deadlines because I am really liking the conversations I’ve had about breaking it down some more, stretching it out, filling it in. Work of art. I need to do it justice. It’s not just another story being tossed out there, it’s my histoire philosophique. It’s me putting Camus and Lewis onto the same gourmet sandwich. I really do believe I can pull this off, but in the middle of all this other duress and another blog salvage…? I’ve always said I do love a challenge. My whole life has been like the Tour de France.

Thursday, April 17, 2014

*wo* O_O ~systems check~ I think I haz liftoff


I had an episode of Beyond the Wormhole going this morning while I worked on a few chores, this one being ep 5 "Before the Bang", first aired on 11-13-13 on the Science Channel. I think Beyond the Wormhole was originally Through the Wormhole, because it's all so familiar, but it looks like updated notations are being added as science knowledge has advanced since the original original airing.

I don't think I got more than 15 minutes into this episode when my brain screeched and asked, "But can heat really dissipate in a closed system?" I had to pause the show and jump onto my phone, where that question took me straight to a wikipedia page on Heat Death of the Universe. The awesome thing about wikipedia is that it gets updated constantly, so scroll-scroll-scroll and in seconds I cut past all the old stuff to 'Current Status' with a comforting observation- "It has long been known that gravity is important for keeping the universe out of thermal equilibrium. Gravitationally bound systems have negative specific heat- that is, the velocities of their components increase when energy is removed. ... Such a system doesn't evolve toward a homogeneous equilibrium state. Instead it becomes increasingly structured and heterogeneous as it fragments into subsystems."

From there I jumped over to the Big Rip. Basically, the big rip means that as our universe inflates and all structures get further apart, the fundamental forces of gravity, electromagnetism, and the weak and strong forces won't be able to keep interacting the way we observe them now. All the galaxies will be so separated that the only forces left will be within each galaxy, which can't be sustained, and solar systems will eventually become unbound. Once that happens, there isn't much left holding planets and stars together, and that accelerates into atomic breakdown as well until nothing is holding together at all.

So instead of heat death, which is everything simply coming to a standstill in a big freeze, it would be more like it all just falls apart back into a primordial 'nothing'.

I don't really care what happens, or how it happens. I don't take sides on theories we have no way of proving. But I do love that we keep thinking about it! I love that there are other brains on this planet who are curious enough to care to ask these questions, and I love that I can know what is coming from those other brains in mere seconds with a device in my hand.

As tiny wet squishy cells have learned to congregate en masse to share information, so too are their hosts learning to congregate en masse around a planet with the internet to exponentially increase information sharing, a new kind of brain, maybe. The leap from cells to cosmos fascinates me.

I was wondering what to do with this thought, having whipped it into print in a couple of minutes flat, when it dawned on me with a great big emotion that THIS is a neat measurement of how far I've come since I'm Blue a little over two years ago. This was so easy today.

Monday, March 24, 2014

this is how super aspie procrastinates

I loathe forms. I'm good with technical information like OSHA training and cartography and NEPA laws. I'm awesome at organizing ideas, thoughts, and actions around millions of dollars of inventory floor merch and stat cleanup in a hotel or hospital. I can even go straight to a particularly sized and threaded bolt in under a minute of walking into Lowe's. But filling out forms...

You'd think the simple step by step process would be the easiest thing in the world. Name, address, phone number, how many pieces of gum I've chewed in the last ten years. The irony is that I have turned answering questionnaires into a hobby blog, I could practically compete in a professional question answering contest. The reality is that, despite acing blue book tests in a very hard linguistics class for my anthropology minor, I freeze up over simple forms so badly that I actually do them wrong.

I know, right? Who gets their name wrong on a basic form? Who screws up answering a few questions to which the answers haven't changed in twenty years? ME.

I am facing my demons this week. Here is my conundrum- My publisher has people calling me every single week. They have changed my case rep at least three times in the last 6 months trying to get me to cooperate. I can't get through any of their heads that 1- I'm super aspie and don't do phone convos well at all because 2- between auditory processing probs and slight hearing loss AND being aspie that I need them to 3- SLOW DOWN and stop the sell, sell, sell rattling on top of a background rich with other voices, furniture noises, and tech glitches cutting syllables out of every fifth word before 4- I hang up because the cacophony fries my brain out so badly I can barely speak sentences after only a few minutes, much less still form coherent thoughts.

I live with cognitive disability. This hasn't impacted my cognitive content much at all. My lawyer told me during one of the lowest points in my life that my IQ must be through the roof and he wished all his clients were like me. Sadly, it all becomes unusable mush so quickly from interruptions and distractions that I'd never be hired to work for a guy like him.

I need an office manager. They used to call them secretaries, but I know from one of my sisters that getting office skills certified and then actually running an office is no joke. I don't have the money to hire someone, and even if I did I have such a distrusting nature that I probably wouldn't anyway. The people who I do trust have piles of their own stuff to deal with.

I have to do this. If I want to move forward, I have to wrap my glitchy brain around interpersonal communication with a complete stranger many miles away who doesn't have a clue how to help me help them help me. I have to train my rep how to be my handler. I have to do this with a cognitive disability.

Years ago, one of my biggest breakthroughs with my psychologist was when I told him how frustrated I felt being referred to specialists by my doctor, only to have prescriptions thrown at me after five minutes. I felt like the problem wasn't even being defined, much less investigated as to cause. To simply generically treat symptoms doesn't help me get better. You know what my psychologist told me? He said I am easily led. I stray off my path with every new question, and after a few questions the original goal is so out of focus that I can't get back to my path. My assignment was to keep my goals in sight- why am I there? what do I want? So I learned to list a few questions like that before visits with new doctors, and with a little practice I was able to remain more focused and clearly state what I wanted to get out of the interaction. After many years of misunderstandings and sometimes very poor care from some doctors, I am much healthier now and way more satisfied with those interactions.

I don't get to see my publishing rep in person. I have to cut through possibly years of phone bank training and experience to get a different kind of interaction going. I get to do all this over tech that distorts background noise into a nightmare for me, and I need to do this as calmly and politely as possible when I'm feeling my most frustrated. It's so cliche to say I'll need xanax, but that may be exactly what saves the day for me.

Prepping for this phone call involves skills I'm actually very good at. I'm a research maven with years of organization experience. Even this post is part of the prep, it's helping me line up my thoughts and calm my nerves. I keep telling myself once the first book is out the door, the rest will be a piece of cake, because that's how I usually am with new things.

But the forms.... "Does this work contain any preexisting materials?" I have questions regarding how to answer nearly every question on these four endless pages. My rep will practically have to hold my hand through this whole form filling outing process, and she's going hate my guts before it's all done. *facepalm* Because I'm aspie. I can't just check a little yes or no box without forcing another person to commit to mental gymnastics because they can't understand that I don't need a textbook understanding of their job, but I DO need them to please repeat that entire last phrase at least three times because for some unknown reason they can't fathom what slowing down their talking means. Maybe it means I'm so dumb they feel they have to keep over explaining everything, but all I need is to correctly hear the words they speak. I'm sure they're wondering how in the world I think *I* could ever write a book.

I can tell from that last paragraph that I'm not ready for this phone call yet. I may have to go fold some laundry and clean some bathrooms first while the xanax kicks in. I don't know why my psychologist doesn't think my social anxiety isn't as severe as I think it is. This is ridiculous. My rule of thumb over the last year is that if something is upsetting or terrifying me, find a way to write it and throw it out to public, because that is usually more terrifying than just doing the thing I'm afraid of in the first place. So, here it goes.

Wednesday, January 8, 2014

new year spoonie assessment

Last winter didn't look terribly hopeful but it was a huge step up for me from winters before. This winter is amazingly way better than so many years past. What changed this year? Here you go, have a power point review.



The biggest thing was finding out I'm allergic to acetaminophen. I've been living on benadryl for so long, dealing with so many other reactions, never occurred to me I might be having a continual reaction all this time underneath everything else. I'm already banned from ibuprofen, so there's not a lot I can do any more about home pain treatment. Requires being smarter than ever before, avoiding impending consequences, not being stupid about overdoing and overextending myself. Pills are a quick fix anyway, not a cure that keeps you from crashing sooner or later.


The next huge thing was ASTYM, all the new rage in fibromyalgia treatment, based on postitive results with athletes. I spent 4 months in grueling ASTYM therapy, deep soft tissue massage for the purpose of breaking up hardened scar tissues for better blood flow and muscle control. That alone has dropped my pain level enough to exist without daily pain meds, hooray! I still hurt, and the pain levels can still shoot pretty high, but I've been given 'permission' now to do what I always found instinctual- dig deep where it hurts. Pressure points are key, and then stretching and exercise are crucial.


The biggest difference from last winter to this that I'm noticing is a serious lack of migraines. I spent last winter with the shades drawn and barely able to cognitively function, much less read. This winter I'm doing just about anything I want with minimal occipital nerve problems and greatly reduced nerve reverb overall up and down my spine. Again, still have some interesting pain, just way easier to live with. A neurologist has finally documented the body-wide dysesthenia I developed last winter as healing from an ancient car accident. He said nerves can take years to heal, especially after being thrown violently out of a car, and being very ill with lupus and diabetes and several rough viruses along the way stopped the healing process for awhile. I'm still avoiding alcohol, don't smoke, eating healthy, trying to get plenty of rest, staying well hydrated, exercising regularly, and not going over my fatigue limitations. I am trying to keep up higher protein and healthy fats in my diet since protein builds tissues and fats are vital for nerve health.


I am currently having a stiff knee/leg from carrying a 15 pound baby around while she was teething, but nothing swelling up so it's most likely frogged muscles from muscle strain. I see a chiropractor once a month and take zyrtec daily to help me sleep on the advice of two different doctors. The zyrtec also helps my body stay calm when it wants to over react. An allergist diagnosed me with autoimmune reaction disorder, says it's common for people like me to just start hyper reacting to everything, so there you go.

If you're a spoonie running into this, I hope it helps. Most insurance and medicare will pay for the ASTYM therapy, but you have to ask your doctor for the referral. Good luck with your stuff.

Thursday, April 18, 2013

Ode to Joy


I have lupus. It affects my brain. I've covered the loss of ability and severe depression I've been dealing with for years in previous posts, so I'm not going to repeat any of that.

This post is about looking forward. How can a person see a future with their brain falling out? I have been 'brain training' for several years getting ready, because it's not something I'll be able to control later with will power or a simple decision to behave a certain way or have a particular attitude. I've already had a taste of the mentally crippled lifestyle I'm headed for, and I know it could happen again at any time without warning, and I have no promise I'll pull out of it next time like I did this time.

 

In the confusion of forgetfulness and mood swings, there has to be a behavior foundation, a rock to stand on, a familiarity to flee to for comfort. I've known people who have gone through strokes, injuries, and illnesses that have affected their personalities, and the people who care for them. I know it's hard.

The hardest part is trying to keep the feeling of some kind of control as it's slipping away, or trying to get it back after it's simply just gone. That leads to no amount of frustration, anger, sadness. I don't want to be angry and sad. It seems to me that the best way to go forward is by learning to let go of everything now while I can, so that I don't try so hard to hang on and make myself, and whoever takes care of me, miserable.

 

Scott is my best friend. He sucks at romance, and he's not the wordy comforting type, but he's got an instinct for making me laugh like no other. Over the years I've developed a complete trust in him even when he does everything wrong and backwards. All I have to do is sit back and let him be the person he is. I don't have to watch what he's doing in case he's wrong because I ~know~ he's wrong. Our lives are very cartoony sometimes, and it's something I've learned to appreciate.

Because of this trust, I have experimented with allowing things to get ridiculously silly and just laugh with him at everything. I discovered a joy that you don't get with monitoring the moments for stuff going wrong. I'm not saying let the house burn down, but it's got to be ok for someone to burn the toast or even plow through a garage door (that happened at a neighbor's house) if we don't want to become bitter people as we age. It's ok for real life to be a silly sitcom or live out your own cartoon network.

 

Every day I practice allowing spontaneity to happen. I'm not a spontaneous sort of person, so this, I think, is key to my 'foundation' attitude when I start losing brain control again. Some days I forget things, important things, and aside from forgetting to write thoughts down as they happen into a list or something because I know I'm going to forget within minutes or even seconds, I just let it go. Even with my brain working pretty good this year, I missed my own daughter's 30th birthday, a milestone, especially as she's my only biological child AND she's pregnant. She told me several times she would be 30 weeks along on her 30th birthday. I knew it was coming, even bought her a card. A week after her birthday passed, I remembered. And a week after that I finally mailed her birthday card. I could have kicked myself and felt bad and either made a big deal of it or moped around the house about the epic fail, or I could make a funny story of forgetting my daughter's birthday and share it with people. Which I did. Mostly people are too busy with their own stuff to understand the portent of my funny story, that as young as I am, I am already suffering some memory deficit. But that's ok. It'll be one of a succession of funny stories.

I remember my grandmother and great-aunts telling funny stories about their marriages and families when I was a little girl. I was too young and inexperienced back then to understand they were dealing with emotionally difficult situations. I look back now and appreciate that my memories of my relatives talking together are full of laughter and silliness. It would have been such a drag to hear them all whining and moaning about how their lives suck, which seems to be the way people carry on nowadays. I don't want to be remembered like that, and it's not easy training myself to be a fun person to be around. I have Asperger's, I'm a natural born griper. Or rather, I'm a natural born pointer outer of incongruity, as it were.

 

The world doesn't have to be logical and make sense all the time. I married into the most illogical family I've ever met, and they seem to be surviving, albeit with mountains of inherent self destructive traits, but still carrying on the family genome into the future. Humanity has survived like this for tens of millennia. Just because I was born with a Vulcan brain doesn't mean I can't learn to enjoy the moments, right? And that's what I want to do, enjoy all the moments I have left. I don't want to be left alone with my crabby self in a room because no one can stand me, or because I'm difficult to interact with. Goodness knows I don't mind being left alone for long stretches, thanks to the Asperger's, but that's an aloneness I choose, not one that I get stuck with because I suck.

The little things are important. A color I like. Something good to eat. Watching someone else giggle or absorb themselves in something they love. If I lose my ability to understand the moment, at the very least I still want to be capable of enjoying it, and I think training my brain to let go of trying to interpret something intelligently to myself all the time is the first step. I'm a natural problem solver when my brain is working, and I'm very good at interpreting thoughts into words. But I've been in the place where strings of words don't make sense, where I can't follow a simple story on tv, where books turn into a gobbledygook of lost symbology. In those times, I can either wallow in despair and grief, or notice something is pretty or funny. My brain training requires that I spend time every day noticing simple things without thinking about them, and emotionally reacting with enjoyment. I feel (I hope) that laying this foundation as a learned reflex will help me and others around me cope better when the next lupus flareup affects my brain.