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Archive for the ‘art journal’ Category

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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death of a hybridJust a storyline and yes, it’s another self-portrait (I’m the hybrid).  This is more or less a scene in a story, a medical examiner sent to pick up human remains, but finds instead a hybrid, part human, part… something else, they believe.  Ears like a sheep or goat, perceptual abilities that are unimaginable by ordinary human standards, extraordinary intelligence, yet quite vulnerable as extreme sensitive creatures, as well.  What they don’t yet recognize is that these are not hybrids at all, but another human species, highly evolved, but their extremely evolved mental capacities come at the cost of being unable to separate themselves from being severely bombarded by every aspect of their environment beyond human comprehension.  Of course, I’ve given visual form to the sensory sensitivities of hearing by incorporating the large ears, though this was just a 5 minute sketch with 2 cheap colored pencils from a dollar store pack (purple & blue). 

As is so typical of many humans when encountering a new life form or culture or race, the early hybrids faced persecution, even torture, were viewed with fear and treated as monsters because they couldn’t help but be themselves.  Out of fear, the early ones were hunted, eradicated, or locked up in institutions where they were warehoused with the rest of the society’s perceived “freaks.”  And predictably, this store turns on our eventual dependency upon these very creatures for human survival, because they have special gifts, abilities of perception that they can draw upon to find and expose the truth, the reality of situations, to be able to detect every nuance of what adds up to how a system is operating, whether the system is a multinational corporation doing business with other corporations, or the system is a single individual, and their behavior—speech, actions, believes, attitudes, condition, must be correctly understood individually, or when combined with other humans (systems).  To wrap your head around what life is like for these creatures, imagine what it would be actually like to be born able to actually talk to the dead.  Or to all kinds of animals via mental telepathy.  Or to see the future.  And you can’t turn it off, though you might take toxic, noxious substances to try to numb yourself to it sometimes, but that only makes you sick, and it’s worse for you after you get clean again. 

Hybrids, especially “seers” are exquisitely sensitive, and are super perceptive far above the range of human perception in multiple ways.  And while it is possible to find non-hybrid humans who have one sensory perceptiveness close to a hybrid level, you don’t ever find non-hybrids with multiple sensory awareness, much less a global sensitive.  Humans often will reject what they do not understand, and prefer to rely on what they already know and use that to label or categorize hybrids.  When people first became aware of hybrids, not as an isolated freak accident, but when trends in their numbers began to be evident, when the powers of that time got wind of this, what happened next looked like they took a chapter out of Frankenstein, rounding them up like animals and slaughtering them, as they were deemed non-human and needed to be culled before it spread like some infectious plague.

There were survivors, and they pulled away to themselves to avoid capture.  Eventually, though, their gifts were noticed and someone realized that they could be exploited as “seers” or “truthsayers”, and they could investigate any kind of system in the world, build a 3D working model in their heads, tell you what is wrong with the system and how to fix it.  They could “read” systems, provided they had access to information.  Seers were indispensible to world leaders, and they had a constant presence on the court.  But they were not free to come and go as they wished, because of the risk that someone would steal them or harm them thereby disadvantaging the government who relied on them.  So they lived in the most lavish palaces in the world, confined to cage—a gilded cage most of the time, but a cage nonetheless.

And now they have started dying off, and no one seems to know why that is happening.  Even the ancient ones like this one, with no apparent connection to the others, has died.  And that is where this story begins, with a mystery—the death of a seer, specifically MY death.  Not that I am suicidal or anything, but it seemed apt.

The background is done in acrylic, with the scene’s dialogue written in white gel pen in my cheap, $.25 lab notebook from Walmart.  You can do more in these things that I imagined!  Having the pages sewn in, versus perforated is a sturdier option if you abuse these notebooks as much as I do.  This one, started just over 2 months ago, has almost all of the 100 pages filled with journaling now.  My next journal will be an actual sketchbook, and I’ll do the writing as I’ve been doing, but it will be interesting to see how it holds up compared to this option.  My hope is that at least I won’t have the bleeding that sometimes happens when I work with markers in these thin pages, though I’ve managed to work with them and incorporated them into that pages entries.

It might seem morbid to write about one’s death, but death is a part of life, after all, and writing stories that reflect my views and insights about the world and myself, as self-portraits, isn’t at all troubling to me.  It doesn’t make me think of hastening my death, or worrying about death or any such; it is simply part of my story, but told via a fictional character. 

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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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Ok, I’m way behind in getting some images uploaded…long story, will update this over the weekend, but here’s the last image I was working on yesterday.  I’ve been drawing, but had to modify to cope with lots of stuff going on.  This one has lots of meaning for me, but will revise this post with that later this week/weekend.  Here’s an image.  Direction in drawing has become very integrated into medical treatment now, and I’ll explain that, too.  I may yet tweak this one a little bit more, but this one was done in pen & ink, watercolor, and colored pencil.  The book is actually just a retail catalog that someone had discarded that was on fairly heavy paper and the size seemed suitable for my purposes (app 7.5” square).  On some pages, like this one, I have glued some cheap manilla-colored children’s drawing paper over the catalog pages to give it some thickness.  I use this book for random doodling like this.  Odd how I often do some of my favorite drawings in recycled books like this. I have a smaller one that I’ve been working in, that I’m going to have to rebind, as the painted pages have torn away from the stitching somewhat. 

For the most part these drawings at least start and progress for quite a while as automatic drawing, and later compositions arise out of them as the image begins to take form.  If I had to plan this picture, I probably couldn’t have done anything that I would enjoy nearly so much or that would mean as much to me.  That process of not planning that seems to have been consistently successful in my drawing apparently still holds true, although I did set an intention to use a limited pallet, primarily blue(without regard to what the actual image might become). 

 

Small Worlds, Big Potential 012810

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unicorn1.0 

I’m adding these themes to my working list of the sketchbook project that I have in process right now: 

  • you don’t have to be a tree hugger to talk to trees, and it can save the world
  • how an extraordinary little girl used every day magic to save the world (series of pages tell the story)
  • how “childish dreams” can save the world
  • can we be polite and still save the world?
  • what unicorns can teach us about saving the world (It’s a secret-this picture is a teaser page!  You’ll have to keep following the story to learn the secret!)
  • How what you believe could save the world

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Page 2 to go into my sketchbook for the Sketchbook Project.  My assigned topic:  How to Save the World.

 

sketchbook Project #2.0-1

A little background about the symbolism on this page: 

The symbolism here is tied to the religious paradigm of the mythical hero off to slay evil demons out in the wilderness so as to protect kith and kin. 

This paradigm was articulated by Mircea Eliade (1907-1986), a native of Romania, who was “a well-known historian of religion, fiction writer, philosopher, and professor at the University of Chicago. He was a leading interpreter of religious experience, who established paradigms in religious studies that persist to this day. His theory that hierophanies form the basis of religion, splitting the human experience of reality into sacred and profane space and time, has proved influential.[1] 

“Eliade argues that religious thought in general rests on a sharp distinction between the Sacred and the profane;[83] whether it takes the form of God, gods, or mythical Ancestors, the Sacred contains all "reality", or value, and other things acquire "reality" only to the extent that they participate in the sacred.[84] suggests that in traditional societies, people tended to view the world as being one of opposing realms, of the known world, and the unknown world.  The known world was “the realm of established order; and beyond the known world is a chaotic and dangerous realm, "peopled by ghosts, demons, [and] ‘foreigners’ (who are [identified with] demons and the souls of the dead).[116] ….According to Eliade, traditional societies place their known world at the Center because (from their perspective) their known world is the realm that obeys a recognizable order, and it therefore must be the realm in which the Sacred manifests itself; the regions beyond the known world, which seem strange and foreign, must lie far from the Center, outside the order established by the Sacred.”  Full Wikipedia Article on Eliade’s life and work

Eliade’ argued passionately for the universality of these paradigms, probably the most controversial aspect of his work to others.  But I would argue that one doesn’t have to look very hard at contemporary cultures, to at least see the pervasiveness of the paradigm of the mythical hero as a recurrent theme today across most cultural groups, in religious stories, as well as popular drama and other entertainment.  It continues to be held up as a value throughout enculturation processes in some form.  The details may vary, but it is a powerful motivator to act, even today. Though the paradigm has its roots in traditional societies, it clearly persists in modern culture and shapes values on a primal level.   

It is a romantic notion that lies at the heart of the decisions of world leaders to take up arms, though how those leaders have formed their perception of who is included in the sacred or in the profane derives from how they, as individuals, have come to see who is “in” and who is “out”.  Whether you are looking at individuals who take extreme measures to strike through hostage taking, genocide, and mass murder, or the knight who fights on his home soil to defend against invaders, all can be seen to be acting on a sorting process.  This process of sorting the universe of being “one/part of us” or “in” and being “not part of us” or “out” begins in early social development.  How we learn to sort and how we act on that sorting is shaped by how we our personal biases are formed.  It is how we judge the behavior of others. 

If we view and judge others around us as being the profane, “outsiders”, “others”, we make them “dragons” in our minds, or the “chaos monster”, as Eliade would describe them.  We believe that it is a hero’s duty to slay dragons that threaten us.  The problem here, is that they are probably not dragons at all, and the facts are likely not that we are good and they are evil and must be defeated.  In fact, they may just be afraid of us, as we are of them, and by our perceptions and acting through fear, we cannot build empathy or understanding.  What is required to avoid the outcome that we are afraid of, is learn to see one another without judgment, to foster trust and acceptance through mutual respect of our common humanity and unique qualities.

When we are looking over at someone that we are perceiving as a “dragon”, we should question our perception, and the assumptions that form that perception.  We should investigate before we behave with prejudice toward another, and try our best to understand them, to see them as they are, not just as we “fear” they might be.  We should set aside our fear and loathing for what is unfamiliar and try to build empathy with others, not try to force them to be “us”, or to force us to be “them”, but to appreciate the differences and how the uncomfortable feelings arose, and then find the common ground to address respective concerns.   We can’t control what other people do, but we can do our part to attempt to bridge the gap.  This is how we can each be a “hero”, and save the world.

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“I see, said the blind man, when he could not see at all.”

 

horse study #1 5x7 11.13.09 I feel as if I saw a horse for the first time yesterday—I mean really saw what a horse looks like,and they are incredible!  In fact, I feel as if I’ve lived the last 44 years of my life, prior to this past year, as if I’d been blind in so many ways.  During those years, I can count very few, very brief memories of actually experiencing the pleasure of just being, of really connecting with the world around me, in the absence of external or internal judgment or criticism, regret or worry, or the nagging feeling in my gut that something was badly wrong or missing. 

Having struggled most of my life to uncover information that would lead me to some sort of enlightenment about what was wrong, I didn’t have a clue about how I was actually “supposed” to feel.  I just knew that I didn’t feel right.  And the more I learned as I searched for answers, I was afraid that I might not even know what to do with them if I ever did find them.  Experts would  sometimes conclude that whatever was wrong with me was “all in my head”, and those opinions certainly didn’t get me any closer to the answers that I needed, or help me restore a feeling of wholeness and normalcy that was unknown to me. 

Well, I found the answers I was looking for, and what can now be remedied has been or is being remedied, and the rest is with me on this journey for now.  Some of the fallout is physically disabling, and incurable, and I often hear from caring and concerned people that they don’t know how I get through the day, how I don’t feel like giving up, why I’m not bitter, depressed, and so forth. I can say that I did feel a lot of frustration for years, and it was a bit of a shock when I finally discovered what was behind everything. For a short time after discovering the truth, I thought that doctors should have tried harder to figure it out, since they were supposed to be the “experts”, but honestly, I just don’t think that is very realistic, nor does it matter to me any longer.  However I got them, I do have the answers I needed, I’m still alive, and more alive in many ways than I ever was before. 

The thing is that I don’t really see my brain as “damaged” now, even if my body has suffered some setbacks, even if the various growing collection of inflammatory diseases, surgical complications, etc. can be traced back to a very nasty accident that should have killed me before I saw the inside of my first classroom.  The injury healed a long time ago, and just happen to have reprogrammed my brain, but I can hardly call it brain damage, when the “experts” couldn’t have sorted it out with my brain’s help!  That is one of the advantages that I enjoy with this reprogrammed brain.  I prefer to think of it as just different, but it is about as unique in how it functions as a fingerprint, or so I’m told.  In fact, I am blessed to have a brain that gives me significant abilities when it comes to making these kinds of connections, apparently due to massive connectivity & coordination between right and left hemispheres, with amazing abilities to intuitively sense patterns, relationships, and make connections of many kinds, that are not readily apparent to many people, even without particular expertise in those fields. Now that I’m not getting pumped full of intolerable chemicals that interfere with my brain, it does this even better.

I feel no bitterness about the past, what I didn’t have, or don’t have now, I’m not worried about what I won’t have or be able to do in the future.  I’m not afraid of the future, and I’m not miserable about the past. I feel really peaceful right now. Because the thing that I do have now, is what I have been searching for my whole life: to be able to be in this moment, and experience everything that I can experience right now. I LOVE that!  To take all of my living right now, and drink it in, to experience it without judgment or fear, makes me feel more alive than I’ve ever felt before. It’s true that a lot of my body parts don’t work like they used to, and I can’t do all of the things that I used to enjoy doing, but who is 50 and hasn’t experienced that, even if not to the same degree as me right now? Hell, I could have died 100 times from all this stuff, but I didn’t.  Instead, I have lived long enough to be able to experience life fully, and to understand me as a whole self today!  How great is that?!  Things finally make sense, and for the first time in my life, all the experts work with me as a team, and I couldn’t be happier!

And although I can’t do some things that I used to, there are so many new things that I am discovering every day that I can do, that I never dreamed of, like drawing a horse!  This gives me great joy. I can SEE things now, that I could never see before!  And what I see, I can draw, and I see so much more than I ever did before, things that used to be so elusive to me, like what a horse’s eyes actually look like, its muscles, and so many other things that are fantastic and amazing!  I think I first felt the NEED to draw, not in spite of pain, but BECAUSE I was in pain.  Now that I was feeling everything, I needed a way to process things, and integrate it into a more aware ME.  I started drawing for the first time ever in July.  It opened up new ways for me to connect with life around me, to experience it, to see it, and to feel more alive and whole.  Now my mind’s eye can see new things, too, things that spring from my own imagination, many possibilities, and delightful impossibilities!  I can show what is inside of me through images now, and not only with words.  How incredible!   Why wallow in disappointments of the past, when I have this to experience right now?  I don’t need to run away from anything, and I don’t need to desperately search for something to fill a hole in my bucket—I have all that I need right now, experiencing this moment.  I am blessed!

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IMG000049 Some days I don’t really have energy to do much of anything, and it affects my creativity and also my positivity to navigate my way through the day’s challenges, whatever they may be. I am posting a list of tips that I will update as I think of/discover additional tips for boosting energy. 

This first list is derived from one that MSN had recently posted via Redbook Magazine, called “12 Surprising Things That Are Making You Tired.”

  • Have I taken a pleasure break lately?  Read jokes, share them with others, flip through a magazine, call a friend, daydream, doodle, waste time, play a game, play a CD while you’re doing routine tasks.  Mini-breaks will make your time more “ho” than “hum.”
  • Have I had my light boost today?—get outside for a 10-minute walk of some kind at least once during the day or when you’re most tired—bright light has a caffeine-like power to make you more alert. Even if it’s cloudy, you get more light exposure than sitting in your studio or office. If getting out isn’t an option, at least try to spend a few minutes in a room with lots of natural light, and if that isn’t possible, use natural spectrum lighting in your workspace.  Some people get the seasonal blues and blas when the days get shorter and they are outdoors less. 
  • Am I Breathing?  breathe from your diaphragm several times each day—when you’re feeling tired or you’re about to go into an energy-draining situation. Put your hand over your belly button. As you inhale, focus on making your stomach and chest move. This will automatically expand your lower lungs so you take in more air with each breath.  The increase in blood oxygen is rapid and the energy boost and relaxation enhancement is significant.
  • Have I Moved Lately?  Doesn’t have to be dramatic to work. At the gym, I had a 5 minute promise to myself to HAVE TO spend only 5 minutes exercising, and if I didn’t feel like doing more,I could stop.  Before I hit 3 minutes, I was always energized and motivate to continue.  The 5-minute rule has changed for me during flare periods, with so many co-morbid illnesses that fight with each other, but even then, I can do what I can to stretch, walk wherever I can, even yawn (with the whole body). Even striding to the bathroom. When I feel better, I try to break up long periods of immobility and concentration on a project with little breaks to keep my body alert. I’ve found that with doing detailed art, intensive research, and concentrating on a project, being in the flow, I lose track of time, but my body feels some effect from long uninterrupted periods without much body movement, and my eyes become strained when I don’t change my focus periodically.  So I try to look off into some sort of distant point about every 30 minutes or so to give those muscles a rest. Feelings of eyestrain can bring the whole body down into a state of fatigue and strain.  If a long involved project has left me with severe eyestrain, I may need to take a break for hours or days and do something else for a while that gives my eyes a little more rest, and come back to it when they feel better. 
  • How is my sleep hygiene?  It is important for me to try to go to sleep as close to the same time each night as possible, and wake up around the same time, to keep sleep cycles stable.  This is less stressful and fatiguing on my body, and enables it to cycle more efficiently. Lack of good restorative sleep is probably my biggest aggravator of uncomfortable physical symptoms and stress, which drains energy, and makes it more difficult for my mind to shift into a creative and relaxed flow.  Flares, for me, are both an indicator and a cause of sleep interference, so when I am having them, it is even more important for me to pay special attention to getting myself to sleep on my schedule the best that I can, and to eliminate anything in my environment that may interfere with that, such as caffeine, worrying about stuff, clean & comfortable sleep atmosphere (clean room, fresh air, humidity, clean air filters, no noise or late night TV), avoid stimulating activities just before bedtime (TV, work, exercise, arguments & other stressful things), wind down period, avoid daytime naps. And make sure to dim the lights leading up to bedtime, to get your brain shifting into the sleep mode (the opposite of “lighten up” above).
  • Am I getting enough water?  By the time you’re feeling thirsty, you are already somewhat dehydrated, and your heart has to pump harder to circulate blood and get oxygen and nutrients to your brain, so your energy drops.  9-12 glasses of water a day, depending on how sedentary you are and the environment.  Fresh fruit and vegetables have very high water content (as much as 90% and more) in an optimal form for absorption by the body, so use these when a bottle of water isn’t within reach.
  • Did I eat a healthy breakfast?  Usually the answer for me is no, but it matters.  Eat a healthy breakfast—make sure there is good quality protein and long-acting complex carbs.  I’m bad on this one, just because I am almost NEVER hungry, and food is hard for me to handle anytime, as eating easily sets off problems for me rather rapidly. Two things that I currently do ok with, is part of a chewy TLC bar by Kashi (my favorite is the Trail Mix bar). Each 140 calorie bar contains 6g protein, 20 grams carbs w/4 g fiber,and 0 trans fat, and the 5g fat comes from nuts & grains.  I used to do well with oatmeal, but the last 2 times I tried that didn’t go well; not sure why.  Probably because I don’t eat often enough.  I can also handle limited quantities of fresh fruit, and protein powder, and I should at least get in a protein shake made with fresh fruit and a scoop of protein powder, to get me going with 20 g protein plus some fiber & carbs.  Raw veggies & raw fish (sushi/sashimi) generally always are ok to my gut, but not exactly the breakfast of choice!
  • How’s my posture? Check my posture and body language—if I’m slouching a lot, energy isn’t flowing properly.  Change positions, straighten up, pay attention to ergonomics in my environment that may be creating chronic stressors and setting me up for some sort of repetitive injuries (i.e., carpel tunnel syndrome) that will drag me down.
  • Get away from noise.  Noisy environments can be draining to cope with.  Bring down the volume when you can on noise.  It’s ok to play stimulating music for exercise, but control what you can of interfering extraneous noise.  I personally enjoy the morning hours, sometimes most of the day, with virtual silence, since my ADHD is managed effectively now, I really cherish the quiet.  Before the ADHD was being managed, I used to work in a really noisy loud environment as it seemed to somewhat dampen the constant noise and clutter in my head.  I don’t know why it worked, but playing bagpipe music at maximum volume on headphones was the only thing that managed to drown out the noise in my head and enable me to focus enough to get through law school papers & exams.  After 49 years of perpetual noise, movement, and chaos, it is almost shocking to a lot of people at how quiet and still I prefer to be a lot of the time.  But it’s so peaceful now, and I don’t like to disturb that precious calm.  When I have to be around much noise for long, I get tired quickly, and look for somewhere quiet to escape to.  I don’t so much find the noise to be distracting now, as irritating.  It’s like screeching chalk across a blackboard for me now, and it feels like a roadblock to my flow.

    If I am trying to do something creative, and having difficulty shifting into flow, the very first thing I have to do is to quiet and still my mind—to bring it down to a state of openness to flow.  If I am having a flare, I have to do exactly the same thing before I can begin to be able to use creative activity to manage pain effectively and get through the flare with the least impact, but I am starting even farther away from a flow state when I am in a flare.  At that time, my entire body is more sensitized to every kind of external stimulation—light, noise, smell, taste, touch—they all increase pain and spasms—so it may be necessary to go to a quieter room, what I might call a “clean room” that is as devoid of harsh sensory stimulation as possible, to get my mind in the right condition to shift into flow and access positive energy.

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So I’m participating in The Sketchbook Project, which means that I will complete an art journal that will be a part of a traveling exhibit before moving to a permanent collection next year.  It’s very exciting, but also a little bit daunting.  I’ve been assigned the theme:  “How to Save the World".”  So I am going to be posting to this blog and updating it with thoughts about my pages, and looking for ideas/inspiration on the theme.  I have thought of a few topic ideas for my pages already, and would do pages around any of these ideas from the list below, that reflect my vision of what we all could do, to save the world:

  • Organize a WORLD COLOR DAY: set up network & internet coverage that can be captured and sent by anyone via camera phones, email, live webcam feeds, and global news organizations.   Anyone in the world who is willing and able should color pages, and people in leadership positions should be obligated to participate, especially political/government leaders:  everyone can choose from a collection of various coloring pages (can be shapes/designs like patterned mandalas or still life pictures, or line art illustrations). Embellishment of the pages is entirely at the user’s discretion.  This enables us to “see” one another through use of color, rather than the color of our skin, hair,etc. It is a common language, regardless of the language that we speak, and does not require special skill or elaborate materials.  Color may be applied with anything from crayons, paint, pencils, to grass, food, soil, makeup.  Anything goes, as long as the paper can hold it.  Coloring is very calming, enhances health, and problem-solving abilities.  It would help the human race, to build bridges through individual expression–without judgment or criticism–and enable people to not be burdened and divided by cultural differences.  
  • Raise children to see differences among people as “interesting,” not bad.  Role models: “walk the walk” 
  • Be mindful that every choice that you make has consequences somewhere, somehow, and/or to someone or something.  Doing nothing is a choice, too.
  • Stand for something that demonstrates the best aspects of your character.  The way you live reveals what it is that you stand for.
  • Forgiving others relieves YOU of the burden of YOUR anger.  Save yourself and the world at the same time.
  • Treat all humans with dignity, respect, and compassion.
  • Practice mindfulness.
  • Permit the innocent to speak of harm done to them by others without inflicting a sense of personal shame on them.  However unpleasant it may be to hear about their abuse and pain, they were victims, and the first-hand experience was undoubtedly at least as unpleasant for them.
  • With power comes responsibility—do your very best to take responsibility
  • Challenge negative assumptions about others and ourselves; acting on negative assumptions generally yields negative results
  • Hope is not a strategy—start from where you are, and act according to your ability.
  • Don’t waste or destroy, just because you can.
  • Always question the source and validity of strong feelings of judgment, anger, sweeping generalizations and prejudice.
  • The value of a gift is not measured in quantity or money or scope, but in the true generosity of spirit, purity of intention, and ability to give of oneself

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Greater Than the Sum of My PartsWell, today I did feel better, and I did go back and finish this image, as I saw it in my mind’s eye.   I like this picture very much, as well, it tells a story.  But the other picture, well, it IS a story, and they are both wonderful parts of the (w)hole that is me!  This was done in graphite, colored pencil, pens, and markers.  I feel glad about both of them!

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