cage

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DISCLAIMER:  These descriptions were written after the onset but before the diagnosis of Traumatic Brain Injury and before the prescription of Xyrem for adolescent-onset Narcolepsy. I used artistic license as accurately as possible with the information that was available at the time to describe symptoms that are counter-intuitive and sometimes impossible to describe even now after years of NeuroRehab. I have decided not delete this or be forced to ashamed as a survivor by the NSA[1] and FBI[2] agents who have been intimidating[3] me since #OpBlackout-SOPA[4] from late 2011.

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Cages. Consider a birdcage. If you look very closely at just one wire in the cage, you cannot see the other wires. If your conception of what is before you is determined by this myopic focus, you could look at that one wire, up and down the length of it, and be unable to see why a bird would not just fly around the wire any time it wanted to go somewhere. Furthermore, even if, one day at a time, you myopically inspected each wire, you still could not see why a bird would gave trouble going past the wires to get anywhere. There is no physical property of any one wire, nothing that the closest scrutiny could discover, that will reveal how a bird could be inhibited or harmed by it except in the most accidental way. It is only when you step back, stop looking at the wires one by one, microscopically, and take a macroscopic view of the whole cage, that you can see why the bird does not go anywhere; and then you will see it in a moment. It will require no great subtlety of mental powers. It is perfectly obvious that the bird is surrounded by a network of systematically related barriers, no one of which would be the least hindrance to its flight, but which, by their relations to each other, are as confining as the solid walls of a dungeon.

As the cageness of the birdcage is a macroscopic phenomenon, the oppressiveness of the situations in which [we] live our various and different lives is a macroscopic phenomenon. Neither can be seen from a microscopic perspective. But when you look macroscopically you can see it — a network of forces and barriers which are systematically related and which conspire to the immobilization, reduction and molding of [us] and the lives we live….

From: Marilyn Frye, The Politics of Reality (Trumansburg, N.Y.,: The Crossing Press, 1983).



see that little "hiccup" on the 4th cycle? thats the only known way to diagnose narcolepsy.  needle in a haystack 



"Without assistance i would die"

i spent 200$ this month on similar assistants. one of my norton nurses asked for help setting up her htc EVO android. eureka! digital assistants using VOIP, video phones, webcams, educational websites, audio calls, even xboxs and playstations used to help with digital-babysitting. and since quality can be monitored, itll be even safer than physical baby sitting/VNAs for both sides. what busy parent couldnt use extra babysitting while getting caught up on work, studying, or rest? there must be millions of highschool and college babysitters that could use a little extra money from the comfort of their homes. a myriad of other advantages makes this concept an all around prefrence





CureBrainCage

small sideroom ive had to keep kitchen, bed & office in for last year. see i ended up with bloodclots?



sleep disoders affect every area of life in some way.



cognitive function disorders also affect every area of life in some way. 


saddest part is, i was actually expecting help after narcolepsy diagnosis. it felt like seeing a rescue ship after being lost at sea.... UofL blanket wiped all credits instead........ then an extra 15,000$ "collection fees" was aagressively persued over the next several years while i was waiting 6 years for SSI disability (which btw, i made another nieve assumption that the doctors testing me actually wanted to help. a lucky 15 minute cognition test score in no way disproves longterm chronic sleep deprivation and cognititive dysfunction. i was punished with an extra few years for that mistaken over-cooperation.) The collection companies were ruthless, calling when i desperately needed sleep the most. "why cant you pay your bills like a real man?" had me broken in tears at 8 am when i was knee deep in garbage going on 2 hours sleep with a chronic sleep deprivation disorder unable to function, i still have nightmares of it. they dont care the sleep deprivation disturbance is psychologically painful. whatever i dont fucking care anymore. invisible torture methods cant be proven so its not like anyones gonna fucking listen to me... but ethically its fucking cruel. im a goddamn human being. (advocate note: should i sugarcoat things like this? i have enough stigma to deal with being pidgeon-holed as "unreasonably angry")



look how many years of treatment were sabotaged by a transportation or 15$ co-pay barrier... YEARS...  "its a shame" is the concensus but the US accepts medical neglect. 





braincage symptomn: inabilily to maintain successful oral hygeine

exposed rootcanal plus 4 cavities plus another unplugged rootcanal. 3,000$(SSI denied). only disfiguring  removal is covered. bototm jaw has shifted rightward and backward. no clue how much that costs to fix. maintaining 

i REALLY dont want to resort to the prescribed oxycodones but if i cant sleep.... ugh. as if i didnt have enough shit to deal with.... im not gonna last much longer with all this stress. i feel like a tightly wound cable ready to snap 
*update. fuck this really started hurting last night. oxycodones are keeping it reduced enough that i can still have narcolepsy naps but just barely...

(update: molar broke in half again month ago. still on hydrocodones every day. cutting tounge. called every surgeon in city. planning to remove it myself, irrigate and replace to prevent smile deformation)


stigma
"I give everyone a second chance. If something happens this time, then youll have to find another doctor" ~my gallstone surgeon annoyed with my failure to meet his cognitive function expectations.

Find Another Doctor




someone please explain why a common first response to my disability is "cant you just write notes?"  even an alarming number of medical professionals ask me this. i spent hours collecting years worth of note books just to take this picture. if this next part does not appy to you, ignore it ~to everyone else (you know who you are) stop wasting  my fucking time & enertia with these absurd attributions and dismissive assumptions. do not suggest any of the "just" list. "just take more vitamines, just try harder to excersize. just grow up, just stop making excuses, just be more like my friends uncles wifes bosses cousin who one time had a disorder that started with the same letter and since she was able to (data is not the plural of anecdote, you dismissive assholes)... in fact... dont even start a fucking sentence with "just try..." how about you acquire narcolepsy via hypothalmic scalpel lesion then hear "try harder & stop making excuses" when youre so desperate for sleep your brain blacks out while driving..  i have a cognitive dysfunction disability, do not try to "relate" to me. no your your need to catch up on a few sleep debt hours is nothing like what ive lived with all my life. its rude, like asking "cant you just fix your heartattack by counting sheep?"  








"how many more medications do they wanna pump into my brain?"

Updated edit: most all of these medications failed and followed a long history of misdiagnosis, neither of which are uncommon in brain fog disorders like Narcolepsy and TBI. 







Family is out of the question. while in the hospital i got messages like "you know your an asshole right?"-grandfather or "everyone thinks your a jerk"-father, or this sweet facebook wall post on my birthday:

You are so fucking dramatic...everyone of these posts are from people that obviously don't REALLY know you. They are from people that ALL tell you what they THINK you need to hear to get through the day, the night,get out of bed, go to the doctor, take your meds, or whatever. I have been telling you to leave this state for how many years, hell we even offered to pay for your living expenses to "go find your self" and now you finally decide to, or are you just running or better yet just more drama. Is this an energy leak as you put it. I am sure "D" and "R" shouldn't mind as they haven't for years in your eyes. As I say "OVER THE DRAMA" ...LATER

OOOKKKK---- Guess your box on the street has wireless huh. And first prize for pity bitch guess with silver spoon up his ass goes to to Aaron Remington Kasey Bale-Grasch!!! That people pay for his CELL PHONE, HIS INTERNET AND HIS MEDICATION.. WELL LAD-E-FUCKIN-DA..

You cry baby bitch, jealousy is the worst disease in the world."


thats the sister who owns several successful bussinesses, goes on yearly vacations, helps her husbands brothers thru college, buying homes, working for the business, but refused to ever help me afford medications. i dont talk about her.


Judge Mathis wants to hear about my case



<work in progress>






Mirror from Help

I cannot wait another 7 months for NeuroRehab Insurance neglect. I am running out of time and options....



3jan 28 - ultrasound revealed bloodclots in my left calf.  

jan 29 - hospitalized at nortons- heartsurgery 60,000$, neuroRehab ~half million USD, 28 DALYs gone: priceless




feb 9 - surgeon implanted this pulmonary embolism filter near my heart via groin cathiter

during my 2 week stay at nortons, the symptomns of BrainCage were drasticly reduced. i spent 22 hours effeciently productive. working on laptop, sleeping better, taking care of myself. i got to see the quality of life difference that 1-2 hours worth of assistance made in such an abrupt change.  medication administered on time(2 minutes), warm food delivered(10min), clean linens/robes changed (5-10 min), friendly small talk, and offering juice or a snack (3min).

A grief counsiler  was scheduled to see me because I had been crying uncontrollably during showers toward the end of my stay. Something about hot showers had always helped quiet my noisy mind but i guess it also prevented coping distractions.  Eventually, I was getting sent back to the braincage. In preperation for the grief counsiler, I made a google document, noting every issue in the tangled clusterFuck i had been living for 27 years. For hours i sat there quietly,  snapshotting any important memory, thought or feeling that flashed thru my hectic mind. After several hours, almost all new entries were copies or rewordings of previous ones and i felt confident that i had captured most of the whole mess on paper. Next i began clumping them by similarities, same way the big5 was found using lexiconic clustering. for example "diagnosed narcoleptic and given provigil", "that time i fell asleep at the wheel and crashed the blue van into the watterson expressway median" and "that time i got called down to the principles office because i fell asleep too long at a redlight on the way to st. x" were all clumped around "sleep symptomns". This process resulted in about 10 or 15 interrelated but distinct categories. Next i plotted those 10-15 clusters onto a time line. It was at this point that two interesting things happened. First, i saw a clear connection between reoccuring themes in my artwork that perfectly matched each of the clusters. My creative process had always been unplanned. I never knew why i needed to paint the things i did. "why is green my favorite color? just is" was common explanation for these previously unattributed artworks. Ive been drawing this exploding chest image repeatedly since my break down 8 years ago. Its been renamed 

"BrainCage"


Secondly, i began clearly seeing the "Development" part of a developmental disaiblity. for example, reading and attention difficulties started in early elementary school, then social anxiety in middle school, then narcissistic defensive coping skills in highschool, and finally full break down in college. 

"Development"




Life of Arkbg





Its been downhill since leaving nortons... everyday i loose more cognitive function to manage medication, sleep, diet, hyegine... 

i... i cant tell you what it feels like...

The underlying "complications"  that caused the bloodclots havent changed since my breakdown after failing college. "stimulants and coping skills" are not enough. at age 6 i began loosing the ability to co-exist smoothly with the myriad social expectations. If i dont find a way to fundamentally manage my cognitive functions and co-exist with society, im going to end up in an undertreated home forever too tired to resist the braincage. This will be the last peep that people hear from me. "out of sight out of mind" 

in spring 2003,  i snuck into a masters level behavioral Neuroscience course, and convinced the kind professor to give me undergrad credit. Dr P taught my first lesson in BCI technology, a spark that lit a permanent fire in me and inspired my last chance of a cure... 




I have 1700$ left. 

new landlord wants 1100$ down. god i need a safe clean place to rest so fucking bad.... 

EPOC is 300$. 

i can rent the 2,300$ PEAT at 99$/mo. 

my htc EVO android costs 80$/mo. 

this only gives me 1-2 months to find programmers to install a BCI cued cognitive orthotics application onto my android. I wouldnt mind spending another few years in the cage if i can see a light at the end of the tunnel, hell, in all honesty, if i knew there was a chance to help the millions of ADHD, sleep disoder and anxiety survivors around the world, i could probly survive another 8 years of this fucking torture... 


judge mathis TV interested in case



charlie & anna squandered that chance. i won local tho at least. yay for consolation prizes!! writing 3rd strike now -.-


  







as of finishing this sentence im going to cross my fingers and start sending emails. ill fight as long as i can but my energy runs out fast... (update: im so tired of fighting this shit alone. this is why PWNs will never have an MLK)

1. god. i think this is what im supposed to be doing but... i cant read her mind, i just work for her.
2. Dr P, the only local neuroscientist contact i know. (note: follow up)
3. rarediseases.org -National Organization for Rare Disorders
4. mnc.org -New Media Consortium (tayzia abattoir - friend of darumas) (note: follow up)
5. googlelabs.com -new project developers at google
6. openeeg.sourceforge.net -the openEEG project 
7. TED.com - inventors from the technology, entertainment & design confrences 
8. MayoClinic.com
9. Stanford.edu
10. lewis black, if he remembers me. i met him last winter
11. jimmy kimmel, also has narcolepsy
12. cody brocious recommended ##neuroscience IRC at webchat.freenode.net/# 
13. Dorie Bernstein or Golda Stein at Dream sim (daruma recomendation)
14. Muhammed Ali ArtMuseum
15. DS
16. DA
17. Eddie Haskel charities
18. BBC
19. Judecca
20. ADA
21. UofL
22. pink sneakers & TLC documentaries
23. oliver sacks
24. Narcolepsy Network
25. Judge Mathis
26. St X lawyer Ken
27. Shamus & DigitalDerby
28. Project Holygrail
29. PWNbear gaming
30. Narcoleptic Syncronization System (Nsync)
31. 








BI-IFEA (Brain injury-Ideas for Education & Advocacy


communication confusion:


Aaron Remington Bale-Grasch • require drs to give a WHO invite upon
each diagnosis allowing every patient on earth to network with others
like them. I have narcolepsy, altho i have never met another one of my
kind in real life, and all our support groups fizzle out, there are
millions of us around the world. just give us the ability to find each
other during diagnosis in an open source network. i call it "WikiHug",
the creator of wikipedia supports the concept altho my explanation
confused him. between him and google guys, we could revolutionize the
world support framework. 1 diagnosis = 1 SSI number = 1 WHO invite.
PWNs can take better care of each other than PWONs can.
3 days ago




Aaron Remington Bale-Grasch • the reality is that any ivory tower
committee will fail to see all the nuances necessary for a
comprehensive treatment plan. but why cant we consider an alternative
to representitive reliance? wiki estimates prevalence at 1to6 per
1000. there are 7 billion ppl on earth. how many votes can be directly
cast on questions if we had every one of those ppl networked?

support systems need a fundamental evolution that hasnt been available
until RIGHT NOW. every single BI on planet earth can be given a google
android (or other equivalent) with 2way video and an open source
cognitive orthotics apps that functions as a 24/7/365 assistant for
the rest of their lives. that can be done RIGHT NOW for nearly FREE.
if the world really cares to improve quality of life for its sick, it
will help them help themselves. give us the tools to connect with each
other, vote on most important objectives THEN assist us with
completing those objectives. detached staticians should help us answer
questions, not lead our destinys. for better or worse, this is our
daily lives. we wake up, live, and go to sleep with this 24/7. it
doesnt disappear when we move onto the next case file. and i am sick
and tired of having my words ignored. we need an unignorable VOTE in
our future.

book reading and face time will never make an expert. and science only
goes so far, (then theres god). creating an open source neuroSync to
connect each patient to a google android (or any other smart PDA
phone) then using a cloudSync network to connect each patients android
to EVERYONE else on the planet will lead to maximum problem solving
potential. this is how democracy works. 1 person 1 vote. supporters
can have a vote on how best to support us too. but until we put the
power of communication and feedback into the hands of each patient,
then acadamia will continue to treat us like cattle. we are not the
helpless animals we are made to be. we are underrepresented human
beings needing a voice and a vote.
1 day ago1






Aaron Remington Bale-Grasch • actually constant video to video cloud
networking does provide "positive human connection" as ive
demonstrated in my PWN demos. and constant video connection will
develop into physical contact. yes ive already ran 8 years worth of
expeiremnts myself. kickstarting several inventions, getting ppl like
the creator of wikipedia to support, working on getting my
neuroscience professor onboard to bring it all together. i am not
getting nearly enough of a chance to prove my solutions tho. sadlyfor
sufferers of brain fog disorders, i often dont get enough benefit of
the doubt to even an oppurtunity to be tested. my communication style
is stigmatized
1 day ago








Aaron Remington Bale-Grasch • i have a cognitive deficit assessment at
frazier brain trauma institute on the 14th. maybe i can learn some way
to communicate well enough to at least get my inventions tested.
finding the cure doesnt help when i cant get testers to comprehend it
16 hours ago

Aaron Remington Bale-Grasch • i could show it easily on cam btw. it
makes perfect sense visually
16 hours ago









Aaron Remington Bale-Grasch • exactly david. i constantly wear my
android earphones for music regulation. relaxation music to calm
mebefore a nap or anxious encournter, fight music to get me going in
the mornings. dubstep to focus etc. well.. wait... correction: that
was until sprint sent me an illegal 1000$ bill, forcing my SSI
disability payee to cut off service and take a loan out on his house
to foot it. wanna guess how much help im getting persuing a lawsuit
because that was also the month of my xyrem test and has communication
blackout caused serious damage? i cant even survive the automated
phone systems to get the chance to even file paperwork much less a
fair investigation into the matter. so this, like millions of other
problems will just be swept under the social rug becauseof something
as "small"as the ability to navigate automated phone systems. healthy
ppl need to realize that a stair to them is a mountain to wheelchairs.
except neurodisabilities dont benefit from social visibility or
funding.

but we dont really need it, we can help ourselves better than anyone
else can help us if we are given the occasional specific assistance to
follow our objectives. automated machine systems is a big hurdle for
me until i found an app that lets me talk directly to an operator of
any company(which is gone now, sadly). googles voice to text to voice
apps could help ALOT too. we have such a myriad of creative solutions,
maybe some day the ivory tower will appretiate it and get their heads
out of their datasets. ;p im half teasing, but we REALLY REALLY REALLY
hate how we are talked to. wed rather just be given the tools and
respectful space to fix our own problems and just avoid the public.
many of us feel far too busy saving our own lives to tolerate
beauracratic failure to give us benefit of the doubt. we are highly
intellegent human beings dealing with problems most ppl cannot
possibly imagine, its sad that we dont get the resepect we deserve for
that. i honestly wish that every normal person could be given a 72
hour temporary neurodisability and then see their change of tone.
6 hours ago1

Aaron Remington Bale-Grasch • linda, great plan in theory but most of
them are deaf. thast why such little progress has been made for so
long. i once attempted to reenact MLKs i have a dream speach. guess
how bad it went. theywont listen unless we solidify. if we have
300,000 votes for something, then theywill listen. until then they
will brush us off moment by moment. i dont waste time teaching anyone
that hasnt taken it upon themselves to at LEAST read a wiki page.im
 

gonna persue the wikihug cloud support project until every single
diagnosis comes with a network invitation. once we just get the
network to conenct ourselves and our small circles of trusted
supporters we can solve our own problems. i played their one sided
gamesfor a decade for nothing. i am tired of adjusting to their rules.
i am an xPWN representing every PWN on earth, and one way or another
the PWONs will listen to us. good luck trying to "teach" them
anything, if you get tired of hitting yoru head on that wall, i could
use help creating a world wide voting network based on disagnosis.
"wikihug: 1 vote per disagnosis. am open source, unified voice for the
invisibles" if we live with the diagnosis, we deserve a vote in our
destiny.
5 hours ago

Aaron Remington Bale-Grasch • also if anyone would like to see an
evolution is the support framework i can show you the "FB fire" that
foreever changed the lives of hundreds of thousands of neurodisabled
humans with the simple implimentation of "facebook secret groups and
skype"
5 hours ago

Aaron Remington Bale-Grasch • nap time, sorry for my spammy
communication style. hopefully fraizer will give me the ability to
communicate better
5 hours ago











Aaron Remington Bale-Grasch • btw if we are supposed to be entitled to
an "inalieable" right to life liberty and persuit of happiness, why
are profit healthcare companies allowed to interfere with our medical
treatments? GHB was discovered as a cure for PWNs over FOUR DECADES
ago but my people are dying, becoming disabled or worse just because
they are born in america. i cannot get medicine to my people without
fundamental change, can someone help me attempt to file
unconstitutionality charges against profit-care? its also HIGHLY
unethical to profit off of sick americans rejections, which is whats
happening. also its highly wasteful of our GDP as we waste almost
twice as much as other countries on healthcare and have less quality
and DIE YOUNGER than them. how can i sue the HMO act? until seperation
of hospital and state occur, my people cannot get real medicine. i
would very much like to attempt to fix this fundamental ethical
violation before i die. but i need to hurry up cause idk how much
longer i have...
4 minutes ago

Aaron Remington Bale-Grasch • C was that a euphamism? this is a PG
rated forum, i dont know if that kind of innuendo is professionally
approptiate sir




(hope he gets that im joking but he probly wont -.-)









12/21/11 - summary of incident #469287 per LegalAid recommendation
My mother and her boyfriend picked me up at 2pm, took me to Daves towing service to retrieve my disability papers for next weeks neurorehab. Towing manager coerced us into paying 440$ by threat of withholding my personal property and arrest, stating that he represents a police impound lot. The manager made me look behind cars at a half hidden "dont enter" sign and stated that and his video survelience was enough evidence to have me, my mother, and mr hill arrested by "his" officers. That extortion triggered Mr Hills panic attack, physical violence, personal attacks towards me & permanent damage to the family relationships. The Towing manager then threatened additional fines if we did not give him another 60$ to bring my van back home. My cognitive orthotic smartphone has recorded everything in either video or audio format for review.
Reply
Aaron Bale
 
8:16 AM May 27, 2011
retired marine landlord steals disabled narcoleptic americans SSI money for "rent, safety deposite & extra savings assistance" then harasses him in morning and threatens to call police if PWN doesnt sleep outside locked house in a junk van or completely move out within 8 hours (without 30 day eviction notice) all of this within a month of the PWN getting heart surgery & gallstone surgery
Reply


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