Archive for September, 2010

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

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

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


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


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


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


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

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


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List in journal entry 090210 for medicaid appln

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

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

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

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

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

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

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

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

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

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

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

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