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At the risk of beating on this worn-out and well-intended (in its sharing) statement to death, consider that secular humanists articulate well (some would argue better) “the golden rule” as an ethical and moral guiding principle independent of organized or God-based religion, irrespective of cultural or ethnic differences, or rather equally accepting of all while subjecting all to scrutiny, without the need for imposition of particular cultural or belief systems as a yardstick for the world.

While I personally do embrace religious beliefs, for valid reasons (for me), I do not believe that the only way to arrive at a moral and ethical harmony/peaceful mutual coexistence with others requires either specific enculturation, nor a particular belief in God/deity/higher being. It’s universal inclusion in most organized religion rather reflects the universality of the principle itself, IMHO.

**Excerpted from A” Secular Humanist Declaration”, issued in 1980 by The Council for Democratic and Secular Humanism (now the Council for Secular Humanism:

“…for secular humanists, ethical conduct is, or should be, judged by critical reason, and their goal is to develop autonomous and responsible individuals, capable of making their own choices in life based upon an understanding of human behavior.
….Secular humanist ethics maintains that it is possible for human beings to lead meaningful and wholesome lives for themselves and in service to their fellow human beings
……secular humanists attempt to approach the human situation in realistic terms: human beings are responsible for their own destinies. We believe that it is possible to bring about a more humane world, one based upon the methods of reason and the principles of tolerance, compromise, and the negotiations of difference.”

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 Let Me Know When It's Safe to Come Out.bmp

This was my journal entry today to the left.  First drawing I’ve done in a week.  Entirely in graphite.  You can learn a lot about yourself, others, safety and trust in a few short days.  Sometimes other people look at me and think that it’s easy living in this body, or that it’s easy being me, just because I am smart and knowledgeable, and have talents.  It’s easy for them to miss the things that bombard people like me, since it doesn’t bombard them.  That’s the thing about hidden disabilities, or when your disabilities render you nonverbal.  Other people working with you may never realize how vulnerable they are, in ways that they can’t say, or even if they do, that others may not be able to understand.  On the outside, I seem that I should just be like everyone else.  I have two arms, two legs, etc.  But nothing about me is like everyone else.  The cost of being uber smart, for me, with my altered brain, is that super perception applies to unpleasant ones, too. 

And then there is the damage from all the crap that crawled into my body after I was born, the stuff that I was born with, that now includes Ehlers-Danlos Syndrome.  It’s why I can’t eat normally anymore, or offload the residuals, so to speak, it’s why I am losing my mobility and will have to start using protective bracing.  It’s why operating on me is a hazardous thing (and should never have had my internal anatomy rearranged), and sutures can be a bad thing.  It causes things like abdominal aortal aneurisms, prolapsed mitral valves that leak, skin to stretch too much and everything to make you bruise, even without taking NSAIDS or getting old or whatever.  If I am careful, I can slow the damage, but can’t undo what’s done.  I just have to be very very careful.  But that’s all invisible for the most part to other people.

 

The week was really good, because I learned a lot about expectations, and what I need and should rely on myself, and the kindness of strangers and the indifference of strangers.  When it overloads me too much, I gradually can become “non-verbal” too.  This was my journal entry today (just the picture to the left.

 

When some people, including caring supportive professionals, see me reactive and trying to block the sensory stuff, and I need their help because I am out of my element and visiting their world, I am not sure they realize how vulnerable I am, stripped away from everything familiar that I use to keep myself balanced and safe and pain-free.  I can’t take drugs for that.  Maybe they just see another nut sometimes, because they can’t know how I’m affected by things. 

 

When I don’t feel safe, eventually, I want to go to the safest place I can….almost feral if it’s bad enough.  And find a tiny little place for this nut to crawl in and ride out the storm.  I lost 5 whole pounds at Respite House, that I wasn’t actually planning to lose.  They had no idea how to feed me, and I can’t tolerate so many foods.  A million things that one might do in one’s house that would be devastating to me, like bleach and ammonia, might not even be especially noticed much by them.  I have only mostly gotten my voice back today. 

 

I don’t regret the week; it was very educational, even if distressing every day in many different ways.  With one exception, I think that everyone had the best intentions and were very kind and compassionate and tried very hard to learn and help.  Really really nice people.  Now that I’ve been there, my “just in case” bag will probably look like I’m packing the house again, but that’s ok.  At least I’ll know I have what I need—until they get used to what I need.  I’m a “tough nut to crack” and it’s a learning curve for us all.  Just remember, though—I’m the one who’s vulnerable when my tools are taken away and locked up, and someone else is in charge of keeping me safe and well.  I can delegate that and have it be a respite when I can turn off my radar for a while.  It’s why I rarely go out, and even in my own home, while most of it is as yet not habitable for me, they are working on that, and I can still hole up in my room and breathe.  I just don’t want to have to live in my bubble forever.  Not much else to like about being at Respite House yet, in terms of the environment physically, but it just needs some work to make it habitable for me, and work for them too.

Just remember that I can draw you a picture of how it feels to be on this side of the paradigm, and I can even give you words to help all you word-thinkers.  But plenty of the guests don’t have the ability to tell you how things make them feel, or to draw you a picture, or maybe you don’t listen to them in exactly the same way that you have to listen to me.  But they feel, too, and it can be hard when you don’t really know how some things affect them, because they can’t tell you or they don’t show it on the outside.  And when I get too overloaded with sensory issues and chemical exposure and pain, I might not be able to be verbal either.  Rather like asking me to calculate Pi when I’ve just been in a head on collision and went flying through the windshield.  Oh wait.  I can’t calculate Pi.  I suck at math. 😉

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I posted in a recent discussion about coping with a tendency toward perfectionism in efforts to create good art, sharing my own experience and constraints around even attempting it.  I’ve tended toward perfectionism in many areas of my work, and certain things in my life, rather obsessively at times, and I actually tried that when I first began to draw, a year ago this month!  Earlier blogposts on this dilemma explain in detail how well that didn’t work for me with art early in my efforts, but as it turns out, there is more to it than that.  I happen to have unusual disabilities that actually block me from being able to have motor control integrate with mental images in a conscious intentional sense, and I can ONLY draw well if my conscious mind disengages in any kind of intentional control sense. Same with my handwriting, like if I have to fit it into a specific space, I can become so overwhelmed that I can’t write. It’s a weird thing, I know, but the blog post explains it well for me around drawing.  It affects me in other ways, like with handwriting.  I was recently asked to fill out a form answering some questions, with limited space to insert my handwritten answers.  The questions were not so difficult, but I couldn’t work out how to fit the words into the space, and it was so overwhelming and distressing, and that I finally had to go to the doctor’s office and get the secretary to sit with me and hand-write the answers as I verbally told her, and she mentally edited a bit to make it fit into the form, and it was done.  I, on the other hand, had lost 2 nights of sleep trying to accomplish this seemingly simple task! 

While the impairment is physically specific to myself, creatively, I think it has value in an overarching sense in my life, to trust myself, go with my gut, express without constraint, don’t decide the outcome in advance, if I don’t have to, just start making marks and don’t worry about the product. Without exception, this is where every one of my strongest pieces comes from, and the aesthetics and all the other good *stuff* took care of itself. It was goodness, it felt good, and because its value did not depend upon whether other people liked it or not, the funny thing is that those are usually the ones that people connect to the most.

I hosted a kids’ painting party at a campground a couple of months ago, with about 15 kids (whom I had never met before), of various ages. They asked me what they should do, and were ecstatic but initially unsure of what to do when I said, "We paint with NO rules! No plans, just reach for colors that you are feeling drawn to, grab a brush, and just move it however it feels good! What made you feel today? A round tube? water in the lake? a special place in the forest? What does that feel like? Warm, cool? Round, long, short, swaying from side to side, do you hear swishing or plopping? What is your personal feeling that feels strong right now? Or earlier today? Whatever that feeling is, connect with it, grab a brush, pour some paint, and just move! What they did was spectacular! In fact, 3 sets of parents came down to my campsite, when their kids rushed back all excited, trying to explain this lady’s approach to art, so they had to come and see for themselves. If I’d had another day, I would have had the parents doing the same exercise the next day! It was such fun, and so freeing! I loved it so much that I kept the paper towel rags the kids used to clean up, and have incorporated them into random pieces that are quite beautiful, including the journal cover mentioned earlier. Every time I look at it, I remember that night, the freedom, the look on the children’s faces when they painted with total freedom.

I often grab a blank index card and pen and just start making marks, and see where my hand goes. Or maybe I’ll randomly brush some ink on paper, fold it and start from some inkblot beginning, and imagine what I see in the random inkblots, and start scribbling in to complete imagined partial images. Did you ever stare at clouds when you were a child and imagine that they were shaped like animals or other things? Same kind of thing, except that you take the cloud images, and you start adding details to what your mind’s eye is seeing–go with the flow. If you don’t like it, you can always swipe it with something to make something else out of it, or turn it upside down and look at it again–maybe a whole new view. Even my husband sometimes does that with my pictures and sees things he didn’t see before!

Sometimes I take my own zentangle drawings (see below), chop them up, flip them around, upside down, cut them up like a jigsaw puzzle, push them back together in different ways to see what images begin to present themselves.   I start drawing in, and painting over other lines to make them look like something completely different, based on the new image forming in my mind. Here’s a sampling of some tangles done, some in progress, and some reference photos to consider. process and flow The first a zentangle that became a foot began as me making marks to deal with pain, then became a couple of other creatures, and currently, that foot is becoming a rather wicked cheshire cat figure. Another tangle, chopped up, became the beginning of a new drawing that is looking like another favorite creature of mine, the poor dodo bird! Another one in progress right now looks rather…..well, I don’t know yet, a weird, elephant with a bird brain something or other??? I’ve thrown in a few of my photos that are fun reference photos to stir the imagination (well, mine, at least). One of a section of the Eno River with piles of rocks remind me of some giant rock children, lounging in the sun, legs in the water, another some reptilian beast slithering up a huge tree trunk, and then there is the "Forest Queen", the tree that inspired the journal page that is a story, or at least part of a fantasy story that I scribbled into my journal. It’s sort of an "idea page" for me. There’s also a zoom of a carving from a site that I visited abroad, that has a number of interesting patterns carved into it. There are many patterns that you could create, just pulling them out of that carving, and turning them into their own doodle patterns, that could launch some lovely pictures.

 

But those are just my brain workings according to what excites me to draw. The important thing is process, and letting go and letting flow. Sometimes you will get to a point, like my bird-brain elephant, where you stop feeling energy around it, and you do something else. Maybe you will feel inspired around it again later, and it will become based on your new energy with it. Don’t worry about how it will turn out; just focus on what pulls on you, and it will be fine.

 

 

 

california condor 020610.1

 

Now if you want to get input on working to specifications, I am definitely incapable of contributing on product-focused work. Either way, though, find a way to connect to your own passion and the rest will take care of itself. I can tell you that, for me, doing realistic drawings like this one   come from exactly the same process of connecting with what I feel and sense, and not from some great talent and technical brilliance and experience. I have never taken an art class in my life, and really don’t "know" what I’m doing. In fact, I have no idea "what" I’m doing, just staying open and focusing on process.  You can do that with a pen or marker or crayon, too. Keep it simple in what you MUST do, and you’ll be amazed at what your imagination will do when you let your mind drift free to explore and express

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shine your light for throwaway children grown old 

Many children, including myself, were throwaway children, abandoned, left behind in dark places or institutions where we should never have been, forgotten, unprotected, crimes against them concealed. You find ways to survive, build a life of your own, but as we age, we discover that some wounds can’t be left behind. If the truth remains hidden in the dark, rather than compassion and support, most throwaway children will receive only apathy and contempt. This was my journal entry yesterday; as this realization came to me, I tried but couldn’t find words at all to speak such a deep truth.  All that my hands could speak was an image, and the grip of this image was quite overpowering.  It was drawn, unplanned as always, in charcoal, oil pastels, acrylic, pen–pretty much everything, predominantly in shades of gray. Darkness and light are powerful energy, and this is how my mind felt it.

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elephant in the room 5x7 color“There is a community of blind men who have heard that an elephant had been brought into the country. Some of them wanted to find out more about the unknown animal. Each one touched another part of the elephant.  Returned home, they tell their fellow citizens their opinions. Thus, the different conceptions come into contact with one another and it becomes evident that they are contradictory.  In the end, the following internal moral is stated: “Every one of these persons spoke the truth in a way, since he described the qualities of the elephant so far as his knowledge of it reached; yet the whole party failed to comprehend the real form of the elephant”
–Translated from Book Four of Ihyâ Ulûm al-Dîn by Abu Hamid Muhammad Al-Ghazzali (“Al-Ghazzali”), entitled Kitâb al-Tawba (translated as, “Book of the Expiation”)

As is often the case when one tries to deal with an integrated, dynamic, complex organism experiencing multi-faceted problems,  as if it were a simply a collection of individual facets to be understood and treated separately, so my convoluted journey with the medical profession is, and always has been, an almost perfect illustration of the classic parable of “The Blind Men and the Elephant”—in this case, I happen to be….the elephant.  Since I am Muslim these past 26 years, and a minor scholar on the subject, I guess it’s only fitting that I quote Al-Ghazzali’s rendition of the Buddhist canon, a great parable, which has touched every human culture in some form for centuries.  In fact, you will find that I have long appreciated its importance in understanding much about human thought and behavior.  In 1994, my undergraduate honors thesis found its permanent home in the North Carolina Collection at the University of Chapel Hill, North Carolina.  On the first page, at the very beginning, you will find this parable again, this time quoting a paraphrase by an American scholar.  What is ironic is that the truth of it, that we’re all connected, and that we too often fail to comprehend the real problem because we only see one piece, is mostly a cliche for most people now.  Yet, the most educated, and scholarly among the human race continue to operate this way, even today.  They speak of the ideal of integration and understanding the connections between things, but they continue to operate with blinders on in practice.  So the ancient Buddhist canon is not an antiquated notion that operated only in remote monasteries in Tibet, but rather, is a most profound mirror of life in the world that persists today. 

With all the countless tests that I’ve had over the years, blind men continue to drive the bus, and when the results appear to be contradictory and confusing to the doctors, they look at me as if I am guilty of a crime, perhaps not telling them the truth, or worse, possibly just a malingerer.  They seek to blame the patient when they fail to understand the problem.  Or they insist upon acting as if the problem is only possibly a short list of the most obvious common causes, again, as a single-faceted problem.  Treatment has been off the rails for years, as everything they have tried to do has gone badly wrong in one way or another, and not once did they have a clear understanding of why that happened.  None of it had made sense to most of them; those doctors that insisted that it did, were usually the MOST AGREGIOUSLY wrong.  They see scans, x-rays, visible symptoms that show them disease activity, but labs that more often fail to confirm, or give them contradictory information.  Each expert takes the data that he is designated to take, to try to determine how to define my condition medically, each taking on the role of one of the blind men:  each describing my qualities or condition, to the extent that their knowledge enables them to do so, and ultimately failing for the same reasons as they failed in the parable.

I’ve developed one inflammatory or autoimmune disease after another.  The way they developed and revealed themselves in testing, time and again, has consistently defied medical understanding.  When neurologists did nerve studies on my hands and arms this past summer, to try to understand the nature, extent, and cause of the severe neuropathies in my hands, they had lots of data that documented that something was definitely wrong with the nerves (I’ve had reduced sensation just in my fingertips alone for almost 4 years now).  They could observe Raynauds symptoms in my hands, feet and entire legs, but were these nerve abnormalities from Raynauds?  Raynauds doesn’t cause joint swelling, redness, inflammation.  Was it rheumatoid arthritis?  I’ve been sero-negative every time they have tested me, yet the joints have the telltale signs of swelling and early deformation for RA, and also erosion, though the erosions looked strange, too. 

The neurologist asserted that the nerve abnormalities that were showing up in the study were only partially consistent with RA, or perhaps only carpel tunnel syndrome, but didn’t make sense overall.  Then he concludes that some of the data from one of my two hands he feels comfortable with calling “carpel tunnel syndrome”, yet this contradicts other evidence.  It doesn’t explain the other inflammation, and the other abnormalities that belie that diagnosis.  So the senior neurologist makes the junior docs do the entire series of nerve studies 3 times, believing that the data couldn’t possibly be right (these tests, by the way, are extremely uncomfortable).  And while they insisted that the data was inconsistent with what they could understand, the data coming out of each test was consistent with all the other tests.  But because they couldn’t make sense of the data, the chief neurologist refused to even sign off on the report, and my rheumatologist, who also couldn’t make sense of it, hesitated to give it any credibility at all. 

Corrective surgeries have, time and again, left me with inexplicable and downright bizarre surgical complications added to the mix, which were eventually deemed “irreparable.” There are virtually no drugs that I can safely take that are designed to help ease the suffering caused by most of them, as I have paradoxical and in some cases, life-threatening reactions to them.  Narcotics, muscle relaxers, neuroleptics, anti-depressants, anticonvulsants, CNS depressants (including alcohol) have all been implicated, and, with the exception of alcohol, unfortunately, are what would be required to treat many of these complications.  And though I don’t partake of cannabis, it is also on the list of “no-can-do,” which is fine because I never liked how it made me feel when I tried it a couple of times in my adolescence.  And I now know that there are logical reasons why all these drugs are so different in my system—most of them are effectively poison to me.  That’s right—poison.  They are toxic in my body.  They can easily kill me, and even if they don’t kill me, they kill parts of my brain, and damage the way my organs function.  So now, my digestive system doesn’t work.  Drugs did that.  Drugs that were supposed to help me, were the cause of the damage.

I had grown so weary of hearing, “I don’t understand why you’re having this problem.”  “This doesn’t make sense.”  "There’s nothing else I can do for you.”  “I would suggest that you get yourself a good therapist to help you learn to deal with stress.”  I felt as if doctors, when unable to get their arms around the problem, had started to look at ME as the problem, or at least just wanted me to go away.  I know for a fact that many along the way did decide that I was the problem, meaning they thought that my problem was all in my head, because they behaved toward me that way after a while.  The problem, however, was not the data, and it was not my attitude.  They just didn’t understand what the facts actually were, and what those facts revealed about the true nature of the problem.  They failed because they kept acting only based on how things were supposed to be, or how things usually work, or how they were taught to understand things, so it blinded them to the truth that was right in front of them if they would only drop the blinders, set aside the biased filters, and look.

The simple fact of the matter is that something happened to my brain a long time ago, before I was even old enough to know about it—specifically a series of injuries—and they each activated a rewiring of my brain through a process loosely called, today, “neuroplasticity”, that resulted in my brain being increasingly different from other people’s brains.  Some of those changes included developing an approach to how my brain interprets signals associated with traumas, nerve injuries, nerve insults, inflammation, tissue damage, and the result was that these kinds of things affect me in completely different ways from most people.  My brain was developing while major protracted traumas were occurring and becoming exacerbated for months without resolution.  My brain interpreted these experiences and something it understood as important to my survival in some strange way, and developed neuro-immune responses that are difficult to make sense of and straighten out, especially now that it has been happening, layer upon layer, for 50 years.  I suspect that if my brain were to explain what it is doing, is that when I have a trauma—physical, psychological, whatever, physical things happening at that time get stuck in this endless loop of acute response, that goes round, and round and round, sometimes getting a little better, then worse again, sometimes causing damage to body parts from inflammation and comorbid effects on other body parts.  And when the body feels distressed, many of them start looping their acute traumatic physical reactions together, as well.  And I’ve experienced more traumas than 10-20 people are likely to experience in a lifetime.

I guess you could look at my brain as having a somewhat unique operating system (human brain ver. *.x instead of *.0 or *.1, with “x” representing, not “improved”, “better” or “worse”, but just “different”) with its own set of rules for interpreting and regulating bodily functions.  They’re not all destructive, like the inflammatory stuff. And it’s not that what is happening to me defies logic; on the contrary, it’s all quite logical, if one understands the relevant facts—if you know enough about the new programming language.  Their problem has been one of “seeing” what they are looking at, rather than what they believe they are supposed to see, not unlike the reasons that many people have difficulty drawing accurate likenesses of things.  Their brain habitually sees only portions, and fills in the blanks with what they assume belongs there.  The problem is that when that doesn’t work as expected, rather than challenge their assumptions, they refuse to accept as true anything that doesn’t fit those assumptions, perspectives, and their knowledge.  Consequently, what doesn’t fit with what they know is either wrong or irrelevant.

This is not unique to the medical profession, but is a common dilemma when trying to tackle multi-faceted, multi-perspective challenges from a single or limited perspective.  One of the advantages to my D’Ger brain is that it is much easier for me to understand these kinds of complex systems in operation than for other people, because my D’Ger brain thinks very differently from most people.  Somewhat like Temple Grandin describes how she thinks as “thinking in pictures,” I, too, think in pictures, and I model systems in my mind like multi-dimensional models operating in my head.  I can see where things don’t connect or work together properly in the model without having to build an actual physical model first.  From what Temple describes, however, her visual thinking is more confined to literal objects in a physical world, whereas mine extend to abstract ideas, as well, though the abstract ideas have images associated with them, too, but can be difficult for me to translate into human language, and in a way that other people can grasp easily and quickly.  I’ve had lots of experience with designing models like this, though, and applying this to my work in university honors thesis, for example, that earned me highest honors in the department.  I used this ability again at IBM, to design new business models, inclusive of multi-party relationships, international trade, tax, and commerce laws & treaties, multi-cultural and national boundary issues, logistics, contracting between parties, and value proposition, and launched multiple offerings of great value. 

I used this ability to tackle similar kinds of challenges through finding ways for large corporations, mired in silo-focused strategies, to address corporate culture-based quagmires that were dragging the company down, and find ways to work together better as a more cohesive whole, and stop undermining one another and ultimately the larger business.  The fact that my former employer was, at one time, referred to as the “big blue elephant” was profoundly significant to me.

Back to this solitary elephant, and her D’Ger brain.  For a long time, I have gone through periods of feeling bitter about the parade of doctors that I perceived were either unwilling or willfully unable to use their medical training and expertise to determine the actual facts and help me get well.  I often judged most of them to be negligent, blind–or both.  Why is it that I have had to discover the answers myself, over and over again, and show them?  How was that even possible?  I’m not a doctor; I don’t play one on TV.  Yet, each time I have been the one doing the research, advocating desperately for myself while trying to find enough pieces of the puzzle to hand to them, so that they can then see what they were looking at.  It has been such a struggle to both have to go it alone with searching for answers, recruiting the experts to participate in developing more and more perspective to inch our way to the truth.  Those experts I sometimes had to drag kicking and screaming even to investigate at all, often scoffing at possibilities that I laid before them of pieces of the puzzle, and thinking me strange and even arrogant of me, the ignorant patient, to present absurdities to them and ask them to even consider my naive notions.  And I know that at least some of them rejected it out of hand, not because it wasn’t plausible, but because investigating the possibility didn’t fit within their practice’s business model.

So I have for years referred to doctors as being the “blind men” in the classic fable of the blind men and the elephant.  But now the pivotal piece, i.e., my altered brain, is now somewhat among the known facts.  I say somewhat because, despite having documented these facts confirmed by medical experts, I continue to experience skepticism, refusal to even acknowledge the documentation, resistance, in a word.  Egos and personal biases are incredibly powerful things, and when combined, a doctor can go from being an instrument of healing, to an instrument of unrelenting abuse.  I suffer terribly when I find myself at the hands of such a doctor, or when such a doctor tries to pull the strings of the good ones.  I am suffering right now because of such a doctor, though in his particular case, I am suspicious that a third component with him may be something also impairing his cognitive function, as observed by myself, my husband, and one of my former doctors.  I am struggling right now to figure out what to do about that one, only because the destructive lens is turned on me and I am afraid of being harmed.

It can be quite insidious when it gets mucked up with people like that.  But there are the good moments, too, and he hasn’t destroyed all of them.  Watching my main doctors have the “aha!” moments and finally get on board could be better than sex!   Until this week, I thought I was in the home stretch on that point, and just had to close with my primary care doctor with updates, documentation, and discussing next steps.  Then I found out that the personally biased, ego-centric, possibly cognitively impaired (Alzheimer’s or just some sort of early dementia?) doctor put a hammer down on my favorite doctor of all time, and for now, at least, she seems uncomfortable about treating me, unsure about what is ok to do with me.  It feels really awful to think that this could change trust and confidence between us, something that has been the reason I would drive an hour in either direction just to work only with her.  She has always been my rock, and I trusted her because I believed that she trusted me.

I realize that a portion of what I believed about how she thought of me, however, was somewhat naive, in the sense that I wanted to believe that because I was experiencing certain things in our relationship, that it meant the other things could be assumed to be consistent with that, including my expectations that she be completely candid with me.  I never remembered seeing or hearing anything from her that suggested that she was being anything but candid, and I kept nothing from her.  But I did recently learn that she had at least some beliefs about me that she did not share with me, and I don’t know if it affected how she treated me as a patient, as well.  If so, I’m not sure that when I was agreeing to treatment, medications, I was actually exercising “informed consent”.  I don’t know if it would have changed my decision or not, because there were a lot of those decisions that I had to make, and the treatments harmed me, and impaired my mental function, and injured my brain, too, and I don’t know if there were reasons for the treatment that, had she told me, I might have said, NO, or asked to get some other assessments first.  I just don’t know, because I wasn’t told the truth of her (incorrect) beliefs about my condition.

While they may never fully understand the full potential impact of how my reprogrammed brain will behave, at least they now know that there are reasons that are logical and understandable for why things happen, but understanding that logic requires stepping outside of the usual suspects of obvious reasons.  Looking only for standard disease profiles may catch standard things that occasionally do happen, but even then, treating that standard disease has to be approached from a non-standard treatment perspective, as well, because standard treatments may also be precluded by my unique brain.  In fact, my unique brain drives the bus and can completely be wrecked if approached wrong.  Medications, for instance, can be a bit like filling the oil tank with gas, and the gas tank with kerosene!  Therapies?  Same thing.  Corrective surgery?  We now know that each severing of a nerve, or post-surgical infection becomes another trauma, and another potential loop effect, not to mention that drugs used to perform the surgery likely amplify this because of the toxic effects they have on my brain, putting it in a sick state to process the trauma.

I honestly don’t know how I am going to extricate myself from the mass of tangled up trauma loops, each of which are PHYSICAL, not something that I get to choose.  This developed pre-verbally in my brain, and evolved D’Ger from there.  I can do stress management, biofeedback, all that great psych stuff to get my attitude right, neutralize as much of the negative psychological interference as I can.  But this looping thing?  How do I undo brain development like this from birth?????  I wish I could just use one of the cool mirror boxes designed recently to resolve phantom limb pain, because I’m pretty sure that it’s similar to what happens with phantom limb pain in many ways, except I don’t have a missing limb; I have an inflammatory response, acute trauma, post surgical responses, I have the saddle injury at 22 happening over and over again.  I’ve got a million of them now, and I can’t trick my brain into thinking that they never happened, and because I can’t tolerate drugs that might ease some of that, I really literally have to think my way through this, without drugs.

Doctors are crammed with as much of what is known or assumed to be true about science about the human body, chemistry, structure, substance, and maladies as they can humanly absorb in their years of medical school, internships and residencies, while acquiring skill and further knowledge as they work with patients in either some sort of general medicine (i.e., family medicine), or in a focused specialization (rheumatology, gastroenterology, neurology, psychiatry, etc.), or else through medical/biological/biomechanical research.  I’ve got no “big picture” doc, but I do have docs who see the significance in a big picture sense.  But that doesn’t mean that they are omniscient, or expert in the particulars of the affected systems & “parts”, as those have their own specialists.  But even negotiating and navigating between my “knowing” docs and the other needed specialists is treacherous, as I recently experienced with the “bad” doctor.  He was more attached to, and invested in, being right about his biased view of what things mean, and being “right” about his original assumptions (which were wrong), but I could have experienced the same outcome if he hadn’t made a professional assessment previously, as he would likely have sought to rely on someone else’s and would have been just as invested in defending it as his own, against all dissenters.  The fact that the referring doctor differed with his assumptions about me infuriated him, despite that she was the expert on the specialty subject, not him.  It’s crazy, and I never saw it coming, either when I met with him in March for a consult, or when I learned that he dropped missives in my primary care doc’s box, threatening our working relationship.  And for many doctors, when they encounter someone with such a complicated and horrific history of injury, sickness, abuse, missteps, they just don’t want to believe it, no matter how true it is.  It’s probably a natural human reaction—not one I would have, of course—but many would say that it’s only human. 

And it’s not like it’s a complete surprise to me that if I ever told anyone what really happened to me, presented as fact, that I would be disbelieved.  I was told, even while being physically and sexually abused under the protection of the very institutions designed to protect me, that if I told, no one would believe me.  They were right.  I was told by my relatives who were abusing me and my siblings since we were very small, that no one would believe us if we spoke out.  They were right.  I was told that if I told the truth about our experiences ever in the future, that no one would believe me.  They were almost right.  That has silenced myself and all of my siblings for years.  That has shut down investigations over and over again, and we even stopped talking about it to each other.  I mean, what’s the point, right?  And I, like my sisters, have tried to put it behind us and move on, writing it off as bad experiences in the past.  And now we’re aging, and our bodies are delivering up the physical consequences of all the terrible things done to them from infancy.  The truth is speaking physically, whether we are believed or not, and we are all suffering. 

While I may understand *why* doctors are so uncomfortable and feel awkward about such things, that doesn’t, in my mind, get them off the hook.  They should be ashamed of themselves for ignoring the fact that I am 1 of 6 children, and we are all damaged badly, and we are suffering, and they are ignoring things that is inexcusable.  Discomfort?  I’ll trade you mine or any of my siblings’ discomfort for a day, and you’ll figure out a way to get over your “doctorly skepticism” longing for the obvious and easy stuff.  I’m sorry that my “medical complexity” makes you uncomfortable; it’s not like I chose this or got a vote.  The one responsible for most of that gets to live out the remainder of her days in bliss, much like her abusive father before her.  I’m actually glad about her in that sense, only because she was broken long before we ever existed, and she is a product of her own brokenness.  There’s not even a “who” inside that shell of a person, just an actor, focused on doing what is necessary to get what she wants. 

It’s scary out there right now, and I just want to survive this.  I didn’t choose to be this way, and I hope that doctors will stop blaming me or punishing me because I don’t fit into their comfortable buckets of the obvious stuff.  Or at least, I would really like to get doctors closer to home who have this expertise, and will work with my local doctors.  Oh yes, and insurance runs out end of June.  Lovely.  I already can’t afford the co-pays and pharmacology; what comes next will be interesting….meanwhile I’ve got my favorite doctor in the whole world uncomfortable, pressed for time, and annoyed, not telling me everything, and now bothered because I am medically “complex”.  Which just made medically “complex” a four-letter word for me.  Damn.  Next week will be better; it’s got to be.

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These aren’t in a particular order, and they are mostly works in process, but it’s a sketchbook.  The first one is mixed media, with acrylic, colored pencil, watercolor, some graphite underneath.  The remaining are all pencil sketches mostly in graphite or tinted graphite.  The rest are somewhat self-portraits, at least in a figurative sense.  In some cases, they have more to do with figurative descriptions of how I might have been perceived by others, recently, or in the past bits of my life, and sometimes how I experienced things.  The elephant girl pic shouldn’t be too much of a stretch to guess at that one.  And that one is an accurate representation of me at a particular age.  I am discovering more and more that I was not only the elephant in the room meaning “let’s not talk about Donna’s issues or objections” but what was happening to me, my needs as a child, as well as my strengths/gifts, were not even noticed.  It seems that my parents never noticed most of the things about me that would have told them that their daughter was different from other children.  They didn’t really see me.  Ah well. 

I draw as a calming, meditative activity.  It gets me out of my head.  When I draw like you see below, it is a mostly not conscious activity.  I don’t plan what I’m going to draw; it’s very automatic.  That is actually why so many of the pics end up being completely entirely in graphite, as I get so caught up in the drawing the the next thing I know, I discover that I didn’t stop to paint or add color!  These drawings in particular have all been meditative in nature.   This is automatic drawing, along the lines of automatic writing. 

 

  CH let itroll 021310 chaos is not the enemy sketch creature 021310 creature sketch1-1 elephant in the room013110 8x10 color girl 020810.2

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In my next life…

RPJ#1-2009p11-12.01-2010.without edits

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RPJ#1-2009p5-12-09.without edits

I have a tiny little hardbound book that I got at at the thrift store that I carry with me for drawing, doodling, etc.  It used to have printed pages in it, which I covered over with this extra cheap manilla-colored children’s drawing paper to give me something with tooth for drawing, but also to thicken the pages, in case I decide to paint (which I often do).  It is physical therapy for me, as well as a tool for processing and regulating emotions & stress, and giving me access to my full brain for analysis and problem solving (versus just the controlling conscious verbal parts).  More about that later.

This little guy was a quick sketch that I did one night while watching a movie, just graphite.  He’s a pygmy tarsier, and they are now believed to be extinct and have become extinct during my lifetime.  He was so tiny that what he is gripping in this picture is the joint of someone’s thumb.  I was reflecting this morning on how much I enjoy looking at, and drawing animals and people, but I feel differently about drawing them.  Since I just began to be able to draw less than 6 months ago (I wasn’t capable of writing legibly or drawing anything whatsoever before that time), everything about drawing and seeing brings constant insight to me—little eureka! moments– about myself and the world around me.

 

california condor 020610I started drawing this California Condor last night, also graphite on my new small sketchbook; in fact, this is the image that I chose for the very first page.  It’s not quite finished, and this was also a quick sketch that I decided to detail a bit this morning, and I will do a little more later today or tomorrow.  I like drawing animals because they don’t think about the “who” that they want to let you see; they just are.  When they look at me, they are not judging my value as a human being, not really.  Their lives operate by a set of rules that are very much in the present moment.  They are authentic.  I may not know exactly what they are thinking, but I can connect with their moment, and the things that I know about that are impacting their lives, like human encroachment, destruction of habitats, starvation, sickness and death from pollution introduced by human “civilization” into their habitat.  I love animals of all kinds.

For some reason, I do my best drawing in graphite.  I have done some pieces in watercolor, pen, ink, acrylic, colored pencils & combinations thereof, but it is still difficult for me to see and organize visually in color or cope with complex visual organization (or disorganization).  That overwhelms me, so I focus on what feels manageable, and I am most comfortable with things that are tangible to me.  I feel things about color, and feel pleasure and sometimes discomfort from how color is used in images sometimes, but I feel more "real" communicating visual images as a monochrome drawing.  This represents better the more visceral aspects of how I experience what I see; when I incorporate color, it may add something aesthetically (or maybe not sometimes), but it doesn’t necessarily give any greater insight into my mind, and sometimes detracts, as if I am trying to embellish an authentic message with something to make it more attractive to someone else.  For me, the color portion is uncomfortable, but it is something that I try to incorporate into some of my art to help my brain to improve connectivity.  I know that the "sighted" world mostly sees in color, and since my eyes work properly, I am trying to become more capable in using my visual apparatus to give me usable information, and to be able to integrate this better with other sensory input. 

I’ve got some major hard wiring problems in my brain, from heavy metals and other toxins beginning when I was only a tiny baby living next to Union Carbide plants in South Charleston, WV, and later, from a devastating head injury at age 5 that, by all rights, should have killed me, and, coupled with other damaging events,  I am fighting for my life now, and trying to race against the clock to rewire a brain that is excruciatingly brilliant in many ways, but some of my circuitry is cross-wired and has my brain attacking various parts of my body.  I guess you can say it has developed an "autoimmune complex".    Not all of that adaptive creative electrical engineering was faulty, though, as it worked around some of the damaged areas by hyper-strengthening others, and I have savant-level abilities, it turns out, in multiple areas, and fortunately some functional areas that the injuries didn’t destroy.  Most of my savant abilities until now have centered around verbal-analytical and patterning.  The new growth area for me this year, is now in the visual thinking arena, and growing connectivity between all through is adding complexity to all of them.

I didn’t understand until recently about how extensive my sensory integration dysfunctions have been and are now, or about synesthesia and how it operates with me.  For the almost 50 years before I could really see things well visually and draw them, I experienced visual images more as a tactile impression.  Same is true for movement, like someone walking through the room, or driving my car.  Movement would feel like degrees of touch, from a skin sensation to pressure, to forceful impact (Sound is also something that I tend to experience intensely on a tactile level, as well as auditory).  When I draw, I can feel the contours and details, as if I have touched them, and my hands can draw what I can feel from them. 

I would look at things, people, animals, etc., but only to scan for what seemed necessary, though I couldn’t possibly have articulated why, because I didn’t know that I was different that way.  The only things I knew about were the things that others had discussed with me, like the auditory issues, and even with that, I didn’t really understand what it meant, except that I had tremendous difficulty distinguishing different kinds of sounds, couldn’t hear human speech very well at all, for instance, if the compressor on the fridge came on, and constantly awakened from sleep by the slightest sound.  I knew that I was visually disorganized, and I knew that I was more comfortable looking at other people when they were not interacting with me.  Or rather, looking into their eyes. 

But when I am interested in looking at people at all, I preferred to look at them when they weren’t directly interacting with me.  I realized more about the whys of it this morning when I was looking through a huge book of photographs in a 1981 edition of National Geographic Images of the World that I picked up at the thrift store.  I gravitate toward images of people when they are "unposed," and you catch them thinking their thoughts without interference from the expectations of the observer.  I have the greatest chance of seeing them unedited, and their expressions can tell me a great deal about what they are feeling, and their body language can tell me a lot about their history.  When I was looking at some pictures of a mother with her baby (Andes), and a group of older women (Jamaica), I caught myself analyzing them culturally and psychologically–reading them.  And then I wanted to draw them, and then my mind went to reflecting on how I look/looked at people, what I see, when it feels good to look at people, and when it doesn’t feel good.  I love to draw eyes, yet I spend very little time looking at eyes when I am interacting with someone.  When I was looking at these candid shots and my reaction to them, I got why it was meaningful and comfortable in one context but not in another.  Just an aha! moment, I guess.

Not long ago, I put up a post with a sketch of a horse, and I said that I saw a horse for the first time–really saw it–and that’s what I drew. I was amazed by the details of a horse’s head.  I think that was the first animal that I drew, and it felt as if I had put my hands all over that horse’s head.  It was exquisite!  And if I can connect with something, whether that I see visually, or an image that arises from my own mind, I can draw it.  I cannot explain how that switch came on, but I’m sure the doctors can say a lot more about that than me.  And drawing is creating new connections between emotion and visual thinking that were never there before. 

My sensory integration issues impact me around proprioception (orientation in space), time perception, auditory (can be devastating), visual, tactile sensitivity (skin stroking is terrible, but the right kind of pressure is helpful), temperature regulation, olfactory (the wrong smell can set off a gut reaction–bleeding ulcer, painful lower gut episodes–or completely sensory overload and a pain flare that can take days to subside).  If I can isolate from sensory input for a little while, I can get the overload reaction calmed down, but the other SNS reactions (gut, pain & spasms) don’t settle down as quickly.  Ideally, get in a dark, quiet room, with a weighted blanket, and that is fastest.  At my old job, they gave me a little room about the size of a good storage closet, with a sofa, in which I kept a heavy blanket and pillow, and I would go there and lie down till it subsided.  That helped to reduce my absence from a lost day of work to an hour or so.  I didn’t know what was causing it then, but had stumbled on this solution.

To throw out a few labels for perspective, I am autistic, and my brain has been altered further by injury, or, more accurately, by its aftermath.  The impact itself isn’t what pulled things apart; the aftermath of the injury, both the pressured internal environment in my head, and that provided by caregivers afterwards, did the majority of the damage and what resulted in the challenges that I face today.  The emotional intensity was mostly around when I discovered the truth of what happened, and what my actual condition is now, both in terms of grieving what happened to me, and relief over finally having the answers *before* my death.  I knew practically nothing about autism, outside of stereotypes represented in TV & movies, and never felt the need to study it for myself..yet.  When my doctor first broached autism with me, in fact, it didn’t even register properly (auditory memory with me sucks, at least on a conscious level), but somewhere in the back of my mind, I heard her say it, at least, and it did bubble up to the surface.  I did some research, though, and realized the truth of her observations.  That was a shocker for me, but now, I am just trying to understand what that means for how I can help myself to make my life work better for me.

And the bit about fighting for my life–that’s really the result of what my doctors refer to as the "perfect storm" that constituted as my childhood.  But that’s for another post.  For right now, I am learning about myself and my world through new eyes, or at least, the graphics on my mental computer are allowing me to see it anew.  Wow, what’s next?  I can’t wait!!

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female admin.1  This is a sketch that I did of the admin at the doctor’s office today.  She had such a warmth and beauty that emanated from her, and I really liked her.  I was originally doing a sketch of the two admins together, but I decided that they should be separated because a) I got a completely different vibe from each—both good, just different, and b) not enough time to finish both, and c) curling lines and shading worked better with the tremors in my hand and my pain levels, for some reason.  So I separated them after I had sketched her and part of him.  It was calming to do.   It’s all done in graphite pencil.  I never even caught her name, but I will definitely ask, as I’ll give her the sketch the next time I see her. This is the first time I sketched an African American woman (I’ve done so few serious drawings of people since I started drawing in July), and I’m pleased with it so far!

The thing about sitting in the waiting room, was that my whole left arm was really painful, and I was having difficulty quieting tremors and spasms in my left hand coming from a progressing shoulder impingement.  ; since I’ve started drawing, the impingement in my left shoulder that severely impaired me through half of undergraduate school, and most of law school has returned, and I couldn’t hold my hand steady enough to draw some lines on my doodle page.  This shoulder problem left me with a frozen shoulder that remained that way for over 5 years, and I had to do all my note taking on a keyboard before laptops were readily available or commonly used in classrooms.  My whole left arm was locked down, and using my hand to do things set off these needle-like sensations up my arm and I couldn’t hold my hand steady at all, and quickly the pain.  Back then I was eventually lucky enough to have a therapist who snapped through enough of the adhesions locking down my shoulder to enable me to move my arm again, and once I’d recovered my mobility, it took years of work in the gym to rebuild the musculature that had been lost to atrophy.  In fact, when I started, the whole left side of my back just sagged and was a fraction of the right side.  After that, I avoided using my left hand as much as possible, though I worked out with my whole body, because I didn’t want to set off the nerve stuff again, since they never knew why it had started in the first place. 

Then, about a month ago, I started getting that weird tingly feeling creeping down my arm, from about the elbow, then increasing muscle spasms and pain, and eventually all the way up to my shoulder again.  I wake up in the morning and I can’t straighten my arm, and it hurts to hold a coffee cup, and I have to apply heat and massage, and pain creme to get the pain tolerable, just to do basic things and break up the stiffness that set in overnight.  Holding a pencil lightly in my hand, or a marker, while using good ergonomics, should not cause this.  I do have rheumatoid arthritis, but I don’t know that is what this is.  So they were backed up  at the doctor’s office yesterday and I had to wait a while, so I sat and drew.  I tried to finish up the last pattern in my newest tangle pattern sheet, but what was left were some mostly straight, short lines, and I couldn’t steady my hand enough to control placement. 

So I set the pattern sheet aside, and got out my sketchbook, instead, and decided to use my meditative pain management methods instead.   I needed to NOT control that hand, because it was not in a state of control, but I DID need to calm myself down, at a minimum not increase the spasms, and try to reduce the pain.  Starting from there just meant focusing on easy marks—squiggles in this instance—and she caught my eye.  I didn’t tell her that I started sketching her while she sat at the window, as I waited to be taken back to see the doc. It because with focusing on her beautiful hair, the soft spirals felt comfortable and relaxed, small enough not to be too taxing, and then I was noticing the graceful curves all over her face, and the way the overhead lights created powerful contrasts against her deep brown skin.  I don’t know how exactly to put words to the feeling of having my gut, eyes, and hands connect powerfully when I was drawing her, as if they knew exactly what to do, like my hands felt exactly what marks to make, and it was resonating from vibes that I got from her.   I only had a very rough sketch at this point, and then they called me back to see the doc.

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