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“You look familiar, have we met?
You’re one I doubt I would forget ”
“We were connected long ago,
But why you left I did not know.

So many years have passed its true While I, alone, did wait for you.
Though I called often from the dark
To try to soothe my lonely heart.

I heard you speaking loud and clear, When I was was calling, did you hear? Your life you spent just chasing round
A clock that just kept ticking down.

Yet time did never touch my face Suspended in this timeless place.
Now I must speak, so listen now;
This truth you must embrace somehow:

You see we always have been one
You ran, but you weren’t really gone.
And for your journeys, chasing time
You’ve missed a lot by flying blind.”
“Now that I’m back, oh precious one,
We never have to feel alone!”

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Bigger than me, bigger than any problem…making space in this moment….thank you!

Life is but a dream!

From the beginning of my life
I have been looking for your face
but today I have seen it

Today I have seen
the charm, the beauty,
the unfathomable grace
of the face
that I was looking for

Today I have found you
and those who laughed
and scorned me yesterday
are sorry that they were not looking
as I did

I am bewildered by the magnificence
of your beauty
and wish to see you
with a hundred eyes

My heart has burned with passion
and has searched forever
for this wondrous beauty
that I now behold

I am ashamed
to call this love human
and afraid of God
to call it divine

Your fragrant breath
like the morning breeze
has come to the stillness of the garden
You have breathed new life into me
I have become your sunshine
and also your shadow

My soul is screaming in ecstasy

View original post 66 more words

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Project Spirit Journal: Dreams.

Dreamers

Swim forever

Through a sea of sleepwalkers

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When people don’t want to discuss past events, or allow others to discuss or focus on the past, very often, their motivation is a desire to avoid facing their own void or, to barricade and insulate themselves from inconvenient truths.

Fearing consequences from these truths, in an attempt to deflect or discredit what threatens them, or if they are simply opting for “ignorance as bliss”, hoping and believing that the clichĂ© is true because they want it to be true, they claim to what feel safe to them, whether it is or not.

They may say, let’s not dredge up the past, or what’s done is done and can’t be changed. In the psych world, they would blame the patient for ruminating, or worse, when confronted with an inconvenient truth, they more often would stick some pejorative diagnosis on the speaker, so as to discredit them and after that, no one would listen to them or believe them.

Now this is a situation that is motivated purely by self-interest, not from care or concern for a patient, or a desire to discover the truth, or to help anyone except themselves. Also called a conflict of interest. I’m that can be a very inconvenient truth. The particulars may, in some cases, be that they have taken possession of an innocent victim’s person in the first place–a kidnapping under the guise of protective treatment.

Even when the crime is known, very often most involved will fall back on a preference that the victim accept, silently, that what’s done is done. Well that may be convenient for the sensibilities of the general population and those involved in the crime, yes only intensifies the harm done to the victim, and could very well determine their very futures forever.

From this, there will be no lessons learned, no action will be taken, to change to prevent future similar outcomes. These individuals in these situations who are in power are are therefore virtually bulletproof.

Temple Grandin, like myself, has lived her entire life, with most formative choices motivated by primarily fear, that formed the foundations of her life efforts and growth. When the world is constantly bombarding you from birth with its millions and quadrillions of the details of truths that you cannot block out, and your gifts render you so different from others, (a la Ghost Whisperer, trying to conceal the truth of what she sees and experiences that the rest of the world does not), trying to pass for being like everyone else you are not bombarded this way, the human world can be a dangerous place, left unprotected from childhood.

Being smart enough to see all the outcome potentials, yet forced to watch the disaster scenarios play out, not only as potential outcomes modeled in your head long before the event, but now come to fruition disastrously, while being powerless to prevent it–can be agonizing, and you can either go crazy a hundred times or endlessly, or you can really learn to get your zen on, buckle up, and prepare yourself for another roller coaster ride, and ride on.

Sometimes I wish I didn’t have the ability or could dumb it down on command. I get tired. I get impatient and frustrated. I just want to withdraw from all the noise. But at the end of the day I know that I am what I need to be, and it’s a good thing even if I don’t always like it, and even if others don’t always get it. So whatever the ride has in store for me next I guess I just got to ride that train, see where it takes me, and discover what I can learn from it.

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I’m sure that it was noticed that I had to stay offline for a while. Why was not because of lack of motivation, desire, or enthusiasm. In fact in early 2010 I started losing ability to regulate vision, along with other sensory stuff, and I was lemonade especially around using computers are looking it anything with backlighting , and now I spend much of my time virtually in the dark. Recently I’ve been able to start doing some things online that I like this, using speech to type, and trying to grab some energy to continue to do artwork even in the dark, or at least extremely low light. Having “old people eyes”, that has a very finite tolerance period, as well, However I have explored frequently doing my drawings completely in the dark. When I’m at the doctors office sometimes I sketch while blindfolded from the harsh lights, using only my fingers of my op. cit. hand to the gates space and location on index cards. I’m always amazed at the drawings themselves that they are as coherent as they are. At those times I just draw what my mind is looking a.

I have lost some vision, some control over my vision, now intermittently have brief periods of total blindness and it has begun to affect other functional things like speech, so I’ve definitely had to make some difficult choices to preserve the function I have, and continue to do things that I love and be able to do them in the future. Blind services is working with me now, and I’m discovering more ways to express myself and connect, even from my bubble!!

I was one of his children, who was always afraid of the dark. It took a long, long time for that to change. And then this. There are no monsters that are chasing me now, or hiding in my closet or under my bed anymore, but I did want to make it a permanent part of my life, either. However at this point in my life, there’s been so much change over a half century, that I’ve almost become habituated to adjusting or adapting. like some sort of accelerated evolution. Each kind of change has inherently it’s own darknesses, and fear-evoking potential.

;

While I can only speak for myself, I found that rather than fighting it, whether it involves tearing down, breaking down, unraveling, deconstructing, reconstituting, recycling, repurposing, rebuilding, cyborging in ways that I would never have found them until I was there, embracing the darkness when it comes, facing things for which there are no handy or convenient answers or solutions despite sometimes great fear, for me, by letting myself sit with it and not turn away, i e been able, quite to my surprise at times, that I was led to find, in those dark places, not monsters, but rather very important missing pieces of myself that really mattered, and needed to be processed and integrated. The darkness that I feared WAS me, too, and what I was avoiding were lost facets of myself that needed air and space. 🙂

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Being able to get so pulled into something that time and the world dissolve away, for example, was something that I always felt guilty about, because I had no sense of time space or physical needs. Now I’ve discovered that is a part of a larger gift, too. IIssas trying to tell me something important about what I need, my abilities that i have (vs disabilities or flaws), and is a beacon to things that I am passionate about, and really want to do, that I truly connect with, not merely things that I imagined I’m supposed to do or want to do.

External goals and structuring, for me, inhibit creative expression, so I just go with flow, and trust the process. What comes out is what needs to come out; my art is always trying to tell me something, as does everything that I do. Understanding the message may take more time to cook, but I think that’s how it needs to be for me. Whatever I am creating, external agendas and rigidly self-imposed ones, as well, inhibit me, and when I stop trying to control or don’t let others do that, my creative flow goes, and somehow always seems to work, however imperfect they may seem to the outside world, whether essays, posts, songs, singing, poems, or visual art, the best things come for me, when I let go to size the pool and I let go of the steering wheel and stop trying to drive the bus. Just trying to see what happens when I let go, always produces something interesting..

For me, it’s not about shutting out the controllers and critics who also have space in my head, or steeling myself to face that darkness when that child part of me is screaming, “run away!!” Giving space and focus to all of it when it comes, when it’s time, all feelings are liberating when they are given a place at my table. In my experience, if you’re lucky enough to have the ability to get lost in the process, I say fabulous!! Its a great gift!!! Give it room to grow!!

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Apocalyptic Conformism

Clones, stones, monotone drones.
Busted saxophones.
Infestations of militant catatonic uniformistic Lilliputians.

Drag their own salvation
behind themselves
Locked away in tiny secure cages.
Mindlessly staggering toward annihilation,
Blinders uniformly in place,

The caged ones,
forced to silence
forced to bear,
forced to witness
the entire apocalyptic procession
to its conclusion.

The asylums, now standing empty,
their former residents,
their pretty houses,
their perfect masks
just nameless, ever faceless masks,
never real to have been known, ,
never known to now be forgotten
just shells dissolving under harsh gaze of a reality of which they knew nothing.

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Maya Angelou’s quote, and this picture are so integral to the metaphor of my intrinsic nature!!  I thought it was just me, and although I am no doubt a special creature of God as we all are, I feel less “one-of-a-kind” in the lone survivor sense in  the world after seeing this, and that has always felt like a sharp two-edged sword to me-like being unique but can feel lonely at times.  Thanks, Maya..reminder I’m not the last of my kind, perhaps I have distant cousins in nature!!!

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    A Poem for My Children

(A True Story)
by Donna Earley

When I was young, I yearned to be
More like my forest family.
Anchored, bowing toward the creek,
My roots, so strong, would reach so deep.
I asked my trees to show to me
What I could do to be a tree.

“Precious child, we love you so,
You do belong, but you must know
Because your nature is to flow,
You must be free to come and go.
And though so small you still may be,
Someday a river you can be.

Then, when you’ve grown to your full flow,
Into the ocean you may go!
Imagine all that you might see
And how connected you’d then be!
Sometimes, you can return again
When heavens bring you back with rain.

Though anchored here we must remain
The times that you come back again,
Then tell us all that you did see
While you were flowing wild and free!
We’ll feel as if we went along,
And here you’ll always have a home,

Looking back each time, I knew….that what they said was right and true.

But flowing free did have a price,
And many things were sacrificed.
For every time I came back home,
A few more precious trees were gone.
Then one day, I grieved to see,
Apartments where my trees should be!

Now, not a single sapling left,
Tears flooded every place I wept.
Bricks, concrete, and asphalt too
Had taken what I loved and knew.
With grief so great, for years I flowed
Not caring more of where I’d go.

But time did slow me for a while,
And twice gave me a precious child.
While each one carried parts from me,
Each also had some traits of trees.
While little, they did gladly go
Wherever Mother chose to flow.

But each, in turn, declared to me,
“I feel.. I need to be a tree.
Your flowing life, inland or sea
May be what you are meant to be,
But Mother, we are not the same;
At times your flowing gives me pain.

I am part tree, and so I need
A place where roots can grow and breathe.
A forest is where I belong,
Where future saplings can grow strong.
Oh, don’t be sad, and please don’t cry.
My love for you will never die.

Go-be the river that you are,
But just don’t drift away too far.
You’re part of us, as we are you,
There’s still important work for you.
No matter what we choose to be,
Our Mother you will always be.

Just one request we have of you,
If you would try your best to do:
Your flow feeds us in many ways,
But floods can wash the soil away!
A gentle flow would be so kind,
And give us all much peace of mind!”

20120711-102718.jpg

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List in journal entry 090210 for medicaid appln

I’ve posted some of my drawings and paintings, in some cases showing stages and process, and I’ve posted before about having disabilities preventing me from being able to draw, and having terrible handwriting and so on, but I rarely show you just how bad it is, when performed at a natural pace in  routine setting.  What you see above is a scan of a list of items that I was writing down as it was dictated to me by my case worker, just last week.  In order to make it legible, I have to slow it wayyyyy down, often write it first in pencil so I can correct it (many times), and then write over that in pen.  It is a severe strain for me physically, both to be able to see the marks to control them (my eyes don’t see together—binocular vision, when present, is fuzzy, and I can’t hold visual lines still when I look at them, to track the lines or bring them together, like with circles.  I can’t  make my hand follow a circle around and connect it without error—making the points complete the circle.  The effort causes a lot of strain on my hand and grip, because it’s difficult for me to grip things consistently with fine motor control, and my hand starts to tremor, then I get pain or numbness or both in my hand, and my shoulder hurt more and more and become immobile over time—frozen.  I end up with nerve impingement chronically from the effort.

This and other problems that I have, such as being extraordinarily clumsy, falling constantly, injuring myself, spilling, dropping, breaking, losing things, tripping over my own feet, in fact, they are all features of dyspraxia, also known as developmental coordination disorder.  It also affects my ability to regulate volume, pitch and rate of speech, as well as other things.  It is one of 4 developmental disorders that I have, the others being chronic toxic poisoning during infancy, Asperger or high functioning autism, and sequelae of chronic traumatic brain injury at age 5 yrs 0 months.

VR provided me with typing classes starting when I was about 13, for 8th, 9th, and 10th grades, to give me a tool for written communication, if I could develop proficiency with a keyboard.  The interesting thing about that is that it worked in ways that I did not anticipate or understand until very recently, and certainly the VR folks wouldn’t have known.  At first, it took me a really long time to remember the keyboard to be able to type pretty automatically without thinking about where each key was.  But once I was touch typing, it was easier for me in many ways, as my memory retention/recall is stronger with the tactile aspect, and I am able to process more of interactions spontaneously if my fingers are active with something, like a keyboard, or something else.  Without it, I am weak and straining to process information and remember anything that was said.

Before I went to college, the note taking problem wasn’t a problem in class so much, because I had a photographic memory and it was easy to hold the details in y head and work with them mentally.  I missed a lot of the lectures, but made up for it by consuming information voraciously.  But in colllege, there was no way to keep up with it, especially since I utterly lacked organizational or study skills.    In some cases, using a laptop helps me to offset other functional issues, such as problems with spontaneous social interactions, as the clicking of the keys are almost like stimming for me (also called stereotypy), and can be soothing when I am feeling sensory overloaded or stressed in other ways.

It wouldn’t bother me quite as much to have these functional challenges, perhaps, if I didn’t also have a special kind of brain that processes information via images.  It is natural for me to think this way, and words are quite *unnatural*.  and I not only have many of the classic problems of trying to communicate and have reciprocal relationships with others not like myself (I call them human—what I am in their categories doesn’t fit), they have tremendous difficulty reconciling what sort of creature I am and what things mean because I don’t fit into their buckets, hence why I refer to most humans as “bucket people”.  One of my old rough sketches of bucket people:

bucket people across the world But I have to basically double translate, first into language as fits my thought processes, then into language that is accessible to humans.  It is exhausting.  Someone once asked me if I dream in English when I have been living abroad or in one of my adopted languages.  The answer is “no” I really don’t think in words, unless I am having discussions with someone in my dream.  I know this very well, because until recently, I lived my sleep like another aspect of being awake, or semi-lucid, and would wake up with extensive knowledge of my dreaming the night before, usually working on solving some sort of problems.

So I am face-to-the-world, a picture thinker, in possession of a vast vocabulary, having studied and/or practiced in many languages and in many alphabets, and I’m being questioned about something, interrogated, examined, and my attempts to respond through words can quickly become a trip around the world.  That would be great fun if we both had unlimited time, no pressure or judgment about me, and we were talking about something fun for me.  But that’s not the way it works.  It’s actually excruciating for me to explain something complex to someone who doesn’t think like me and comes into it cold with no understanding of the information in advance or of me, and they quickly become more distracted by my strange behavior and the message is lost to the ethers. 

Typing answers is far easier, but still exhausting for me, as words are not natural for me—sort of like if every language that you spoke, including your birth language, was forever spoken as a foreign language.  You have to think of the words carefully, and edit many times to get to the point where it has some semblance of what I want to convey, but is not as good as what is in my head….EVER.

I tried to tackle this problem (not knowing what the problem was), by reading voraciously, learning everything I could about language use, critical writing, analysis, and even acquiring multiple other languages, hoping to find a comfort zone with others.  That’s what super systemizers do when tackling problems—they have to figure out the system, find the connections, build the detailed model in their head, make it operational, and work off of it to know what to do.  When something goes wrong, they refer back to the system they build in their head, and analyze the data and problem against their conceptual working system.  It’s an ongoing dynamic process that continues for me day and night, never stops until I sleep, and I’m sure continues in my sleep as well.  It’s how I process everything that I experience—nothing is intuitive except the process of systematizing itself.  This is likely my strongest savant ability, and also the harshest aspect of how I’m different from pretty much everyone else in the world, both physically and socially.

I think that ultimately it does help to write, but no matter how much language and knowledge I acquire, using it will never feel natural to me.  It’s like walking with crutches on a tightrope….I might be forced to gain proficiency, but never speed or comfort with the process.  Notwithstanding that, I have written a lot of stuff over the years, in magazines, a great honors’ thesis, unique contractual terms in my former job that were brilliant sometimes for the purpose, good other times, and sometimes unintelligible, even with  keyboard.  But i keep plugging away with this inadequate tool.

I hope to develop greater proficiency with drawing, and trying to come closer to producing how my mind thinks in visual ways.  I’d like to take classes or get training that would help me with that, and therapy to help mitigate the physical problems of the effort in my arm and shoulder.  That might enable me to feel less “disabled”.  Getting help with the strain from the sensory disorganization and dyspraxia would be really nice, if I had a wish list, though I was told by the audiologist at UNC that there are no longer programs for that in my area, particularly in working with adults who never had services as a child.  But hope springs eternal, and I will keep looking for solutions, as I always have.  In the meantime, I will keep working with what I have and do my best.

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journal page 080610 So much has been happening, and I’ve been happening to so much, as well!   Change and transition and uncertainty and obstacles/threats, and both anger and fear, triggered by the present, but often with fuel from the past, leaves me somedays feeling positively beaten about the head and neck!  But it passes.  That’s the cool thing, and also the not cool thing.  It’s cool, because I know that even in the throes of pain, confusion, anxiety, depression at times, not knowing what exactly to do/how to cope, I also know that I am experiencing this pain right NOW, and the time of suffering will pass, the fog will clear, the mood will lift, and I will emerge from those moments with something more than I had before—more insight, more relief, more control over the experience (not so much restrictive, as experiencing it intentionally, mindfully, as the process unfolds).  I am keenly aware, as I never have been before, of how I have been shaped by experiences that I didn’t even remember, that telling the story of what I learn along the way, including detailed scrutiny of processes at work, both passive and active/proactively, is itself a multitude of lessons.  It gives me insight into how my own thought processes work—very differently from most of the world, I might add, and why it’s always been so difficult for me to fully connect with others effectively. 

The image is of me, approximately in my 20’s, but connected to me is this elephant.  The elephant represents the fact, unbekownst to myself or my family, that I was, since birth, the “elephant-in-the-room” born autistic (Aspergers), with all the cognitive, functional, and medical potential that Aspies are shaped by, even before they are born.  And this little Aspie “elephant” spent the better part of the first two years of her life, being forcefed toxic pollutants while living next door to a coal burning power plant, years before the Clean Air Act even existed, and decades before they managed to effectively enforce restrictions on coal-fueled electricity.  The damage was already done to this autistic girl who already had a compromised immune system to begin with.

I was constantly sick, and had even been hospitalized once in 1963 with severe dehydration.  I got every virus that came my way, and, as my father later reported to a pediatric neurologist in 1971, “allergic to everything.” 

The third major developmental “insult” occurred when I fell from the upper floor fire landing of a local gymnasium, head first onto solid concrete. It was a very bad head injury, 3” skull fracture, intracranial hypertension and secondary brain injury, also referred to as “diffuse axonal injury.”  The secondary injury, caused by swelling and increased pressures on the brain, caused a lot of the connections between nerves to “shear” or tear apart, while at the same time the brain has trying to heal itself and keep me alive.  This went on for so long, that how it healed, and the rewiring to do it, took the hard wiring in my brain another huge step further away from “normal”.  From the outside, one could observe that the swelling and bruising finally went down, I did not die, and about 9 months after I came home, I was able to sit up in bed without head pressure problems. 

But there was not only no understanding whatsoever of Aspergers Syndrome back then, but also doctors had no idea what such an injury might do to a brain that survived such a fall.  No therapies or medications were administered, no tests for functional damage was done, and I, being only 5 years old at the time, had no idea that I had even less in common with neurotypical humans in how I would interact with my world going forward.  I had a strong sense that I was different from other children as early as 3 years old, but I had no idea why, nor any ability to understand the minds of others. 

Bridging the communication gap has been a lifelong struggle for me, both to understand and to be understood.   I want to be able to relate to other people, to connect with them in ways that are valuable and mutually beneficial.   It’s been agonizingly difficult, cumbersome, time consuming, and exhausting for all parties when I am trying to explain, to clarify my thoughts, feelings, overall perspective on a thing, yet know that I have failed, based on the reaction of those on the receiving end.  I fail for a number of reasons. I have gotten quite expert at being able to profile others, to analyze their behaviors, provided that I am not interacting with them at the time, or at least interacting where I have to be concerned about their perception of me.  This became a huge strength for me in my former job, and as it turns out, is a manifestation of one of many savant abilties.  The way that I journal now helps me really give glimpses into my own mind.  While I do my journaling totally for myself (as I do all of my art these days), I’m open to sharing parts that may be  of interest or benefit to others, or where it illuminates where my head and heart were, on some past event that may have gone totally awry. 

It’s interesting to me how varied my self-portraits are—the images are relative to time, heavily symbolic, even iconic at times.  This was done in my cheap standard lined lab-type notebook, in whic the pages are stitched into a cheap cardboard cover, typically imprinted with some sort of marbled effect, in various covers.  My thoughts that day are about my present situation, but the connections to past events…looking back and experiencing the connections more than the details, how I am represented depends upon what I am experiencing as the most important aspects of the connections in that moment.  Here, I am in my early 20’s.  The elephant part of me, has existed and endured the onslaught of many “insults” that have altered my brain to render me something almost other-humanly in how I think and process input from the world.  With the exception of autism, which I was born with, most of it was caused by the decisions by others act or fail to act—some were family, others including teachers, judges, police, school official, and it developed its own momentum after a while, with the blind following the blind, being slapped with labels/definitions that came to be accepted because the path was well worn, and, neuro-typical humans of all ages, and socioeconomic backgrounds, being naturally susceptible to their own attributional and cognitive biases, unique creatures like myself more often will not be able to sustain acceptance when I come up against those biases.  They used to think people like me were schizophrenic, and often spent their whole lives in institutions.  I was kept in one as a child for 2.5 years, records show that I was orderly, compliant, a good student, and remained there only because there was no stable place for me to live who would accept me.  No one.

The filters are a kind of lazy rule-based system that assumes that I should think and act in a certain way because I look like I belong to a certain group, and when I violate the social rules—spoken and unspoken, the belief is that I knew, or should have known about the rule, and that the violated social rule is something that I can and should conform to, without question.   What

I don’t feel invested in the “blame and shame” game, at least when it comes to my own family’s roles in that damage.  I am less forgiving of societal institutions that participated or turned a blind eye, when they could have taken some simple steps to help.  I understand the things that motivated their choices, their biases at the time as society existed.  That does not mean that I am prepared to forgive.  I still feel that I am owed a debt, at a minimum for the many intentional harms (ie., rapes), looking the other way when abuse was staring them in the face and I was complaining of being molested and raped (which they chose not to even report), noticing, documenting irregularities provided them in reports that they never questioned, never investigated, and never told me about, and leaving it for this brain-damaged woman who happened to have certain gifts, to discover from their own records, piece together the connections, and discover the truth, and even then, only after becoming totally disabled by the ravages of all the mistakes and abuses that had accumulated.  No one is willing to take responsibility.  That is wrong.  I am accustomed to that, but that doesn’t mean that it is right to just accept that nothing should be done to right the wrongs that can be righted, and at least recognize these human-made perfect storms. 

Is it any wonder that I feel safer far away from civilization?  Disasters happen in nature, as well, but nature operates by rules, at least, and they may have undesirable outcomes, but at least they make sense.  That is something I can live with.  I can accept death by tsunami, however tragic.  I’m not yet prepared to accept “that’s just the way things are” when the way things are is entirely constructed by humans motivated by personal agendae, that may or may not have anything to do with justice or even equity.  That is my issue.  And if it can happen to me then, and still happens to me now (except that I fight back), it can happen to others, so it’s not just in the past.  I feel a deep sense of personal responsibility to do something before I die to prevent similar harm from befalling others.  I need to become an advocate.

But first, I need to become an effective advocate for myself, and that means going through this right now.  My art enables me to communicate with others, and to get them to be more open through the way I approach presenting the principles, getting acceptance of possible situations like mine, and only then, telling them my story.  It is becoming easier to have dialogues that are more receptive to understanding my perspective, suspending disbelief long enough to consider the reality, and build bridges of understanding. 

I think in pictures, not words.  I learned many languages, trying to discover the key to communicate with others, but it was woefully inadequate.  Now that I can draw, can do art (since almost one year ago for the first time), I am finding ways to bridge the gaps and find opportunities to improve things.  I hope I can live long enough to do something with it that will help others.  Then it will have been worthwhile.

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