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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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! 

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.

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

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

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

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

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

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

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

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

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

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

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

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.

This began as an elaborate graphite sketch in my small sketchbook, and I transferred the sketch to a notebook cover, then drew it out some more, and painted it in acrylic.    The image was not something that I thought about drawing; it sort of arose on the paper.  I later realized that it was very much a self-portrait, not perhaps in the literal sense, but maybe spiritually?  Everything about it says beautiful, natural, authentic, what I feel coming from it.  I think that I am perhaps more connected to this painting than many others, yet where is it?  Hanging on some wall of pride?  Nope.  It’s painted directly onto the soft cover of one of my notebooks.  You can see the curves on the edges, and lots of scratches.  I’ve recoated it a couple of times as it picked up stain and scratches.  I’ll have to put something a bit more durable, I suppose.

Does it make you think about beauty?  What sort of creature this is?  If it’s a self-portrait, what sort of creature am I?  Indeed, that is the question, is it not?  If you understand this creature, you will also understand how it is a mirror of me inside….

I’ll say this much, if you haven’t picked up from other posts:  I find creatures much more comfortable than people to be around.  They have an inner consistency and logic that I can understand and relate to.  Trying to play human rules is just plain stressful to me.  The rules they claim are broken more than followed.  Their social *intuition* usually gets them quicker conclusions about things, but wrong much more often than they will ever realize, and probably mostly won’t have to discover.  Their social intuition are more like blinders than wisdom, shorthand that they treat as if it’s longhand, and forget that when they fill in the blanks later, their shorthand may show that they missed it.  You probably have no idea what I’m talking about, but I am not socially intuitive with people, because people are filled with contradictions.  I “read” them, “read” the environment, “read” all the details, and do the math and figure out what things mean.  The rest of the creatures of the universe?  Social intuition is a fine thing, because they operate within their own logic, their own rules, and those can be understood.  They make sense in the context of the creatures.  But humans?  Not so much.  But when the intuitive process yields disaster, they call in creatures like me, to tell them what went wrong, and build a better working model, if possible.

When creatures like myself get themselves born, but they have a limited set of things in common with humans around them beyond what they actually look like, it can be tough sometimes to find a truly “familiar” face, a “kindred” soul.  But I do look for them sometimes, or at least keep my radar on, in case one shows up someday.  I’ll settle for a few humans who can accommodate a gentle creature like myself, who can leave me to be me and that’s just great for us all! 

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.