Posts Tagged ‘#WPLongform’

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

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

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


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


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

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

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


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Always knew WHO I was; knowing the WHAT was key to making sense of it, and my connections in life. That took longer; blind hookah-smoking doctors kept trying to feed me poisoned mushrooms and I, naively followed their lead, till one day I realized they were blind, and hadn’t a clue what an elephant was, much less a Mer-elephant!! Ha ha!!

After so many blind dates with a parade of Lilliputian medicine men that invariably ended badly, I paused in 2008/9, to consider how long ago I first suspected, and later confirmed, that I was, and have always been, an–if not THE–elephant in the room.

It took me much longer to realize just how many blind Lilliputians, all strangely named “Dr.” (vs THE DOCTOR), there are in the world. THE DOCTOR would have been a much more attractive adventure, to be sure, but mine was replete with spills, granted, but great thrills, as well!! How can I be disappointed about that??

The blind Dr. years were not such great moments in my history by some accounts, but not so for me. They were painful, yes, and some parts don’t work anymore because they couldn’t see what they were doing, but I gained and learned much from them, too, that became part of my strength and tenacity, and resilience, and passion for many great things.

I figured out, among other things, that it is not so bad to be an elephant of any variety, and I have no desire to try to be anything or anyone else ever again, however awkward that may be for the blind, or for “elephantophobes”! Trying to fit into others’ mirrors has never appealed to me, nor worked anyway, and the blind men taught me the folly of that while trying to convince me that elephants were broken by definition!! Try telling that to a free, grown, natural elephant and they’ll laugh loudly whilst they flatten your notions!!

I’ve survived it all, haven’t I? No lessis wonder, as all those naysayers, touting their blind opinions as taunts or whispers from the darkness as their “good times band wagon” pulled away from my house and out into their dark dusty paths, and all th while they just kept riding around in endless circles, so obsessed about an elephant that they forgot where they were trying to go!!.

I’m told that my survival was a miracle many times. Life is a miracle, so I’ll buy that, but there’s more to it, and no doubt more to come! I have gone on so many adventures, and am now an older but a wee bit wiser elephant now!

And not all of those called Dr. proved to be blind Lilliputians, or even men!! So life as an elephant, albeit more often the elephant in the room, is not such a bad thing, even though sometimes others may not quite know how to relate to me, and vice versa, but that’s okay. When necessary enough, and motivation is there, we have found ways to connect and build some kind of common dialogue. If not, it probably was not important enough for both of us to put in the effort, or else it was just not meant to be. Not all species are, after all, compatible.

And there have been great benefits to being an elephant, especially a Mer-elephant, though at times I imagine Mars to be a more hospitable and compatible place to call home vs here, but there’s such good stuff and peeps here and now here and there, and niches where I was welcome and accepted, and there will always be places, in a sense, for most any kind of elephant to be accepted! And there will be benefits and adventures in my future again, for myself and for the world. I am patiently waiting for my next adventure! Ok not always patient, but eager and ready to see what tomorrow has to show me!

After all, since I am, not just an elephant in some room, but a Mer – elephant, I am a very special kind of elephant! I have flowed in many ways in my life, touched many places, many things, and many people, sometimes for the benefit of many, or for a few, or for one, or for myself, or the effort, at least was there, however it played out. Sit gave me great pleasure to give and get benefit from flowing!!

Since being in this cage over the last few years, I’ve learned that I can flow from wherever I am, under the right circumstances! How very delightful!! I hate confinement, but then again, there is no cage yet whose walls could hold back this flow for long–only I, surrendering to what I could not control, chose that as necessity for a while to gather my strength, grow, and prepare to let loose a mighty storm!! I have always been considered a force to be reckoned with, whatever the reckoning might involve. I see no reason to suppress the force, just adjust the flow at times.

So I say, why stop now? Life is ahead! Elephants, and Mer– elephants: go ever forward! All of us! No matter what the blind men may say, we belong in the world, too , and the world needs the elephants!! Remember that!! :-).

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This is a quick 10 min pencil sketch of me last night.

Then I read this post that our lives are the products of our choices. Partly true but not entirely.

Some days JUST SUCK and there’s not much you can do sometimes to Prevent the sucky part, and you just have to ride it out. Yesterday and the day before I’d like to erase from my calendar, but eventually I won’t feel the same. For now, still in the SUCK zone till I’m done.

Ok I’m responsible for MY choices, including how I feel/what I do within my ability, about others’ choices that affect me, but unless blaming & judgment actually contributes to solution (now or future), that’s the extent of its value for me. But it also depends on the tools that I have to work with and most people don’t l know how to change their toolbox.

Important not to discount perspective about how injustice kept hidden can shape a human being profoundly. The right to articulate one’s perspective about a happening is very important–and more, to be heard. Sometimes that can make a problem a non-problem or prevent getting stuck with hard-wired blame/shame reflexes.

Theoretically, one can CHOOSE, provided their brain is physically hard-wired intuitively to do that; if not, it is possible to rewire, but only with intrinsic motivation and a minimum of ~ 6 months of relentless practice, step by step over and over. Worth it?? For me yes, but I’m not hard-wired to fall back on cognitive distortions as much as other people. Always open to an impressed when I see people develop this who didn’t develop it growing up.

Even then, cog biases as like muscle memory–your brain WANTS to do what it’s used to doing-unless something has tipped the scale that changes the priority, we fall back on defaults and still do when we’re tired and hurting and no resource to focus energy on doing something vastly different. And it’s why I forgive daily other people who do things in ignorance when the red flags and clear facts were in their hands. Eyes can’t see what filters block.

Bottom line: it’s not quite that simple to weather a storm by ordering up a sunny disposition–can’t hurt, and if authentic it helps when you’ve got nothing else. But it just doesn’t show up like fast food; it’s like an acquired taste for a dish that takes a long time to prepare, and skill of a fine Japanese sword maker. Great ideal, though, and the journey for me is worth it however close I get.

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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 UlĂ»m al-DĂ®n 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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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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