Blog Without a Topic

Identification

[Note: ok, so that post about the drawings I wanted to make? I can't find my drawings, so that'll take a while longer.]

Why is it that, when I technically also "have" generalised fear disorder, dyscalculia, backpain and IBS (and a bunch of allergies), I mainly think of myself as autistic? When being involved with advocacy stuff and thinking about disability rights, accessibility, that kind of stuff.

I honestly don't know I mean, this isn't where I start off a long post answering the question I just posed.

I'm the world's most irregular blogger!

(ok, that's probably not true, I bet there are even more infrequent and irregular posters out there, but it's such a nice title!)

Ok, so what's happened over the past.... *goes to check* .... jeez, 6 months! (In no particular order)

I made two guest posts on Change.org, autism.change.org to be precise: http://autism.change.org/blog/view/high_hopes_for_the_low_lands  and http://autism.change.org/blog/view/high_hopes_for_the_low_lands_part_ii

I (and a lot of other people too!) was interviewed by Elesia Ashkenazy, over at her blog Aspitude, which you should also read beyond this link because it's good: http://aspitude.blogspot.com/2009/03/world-autism-interviews-norah-vd-stel.html

I went on holiday in Cornwall with my partner, parents and brothers and it was awesome. May post pictures later.

I joined the Facebook application Farmville on the recommendation of the Amazing Gonzo (I don't think she's a magician, but you never know).

I stopped doing sports with an aide but started doing sports without an aide, in my own home, on a hometrainer, which was sort of nice and sad too, because I have that hometrainer because it used to be my grandpa's and he died, and I inherited it.

I had a suspicious mole removed from my back (test results pending).

I really liked this post on Change.org and I wanted to dedicate a blog post on the subject, so I finally will sometime soon (I promise before the end of next week).

AND CUT IT OUT WITH THE GAZILLION SPAM COMMENTS ALREADY!

How Nice Would It Be...

Triggered by A blog post Dora Raymaker made on autism.change.org (http://autism.change.org/blog/view/simulations_and_analogies_for_understanding_autism), I was thinking about helping people imagine or experience what it might be like to be autistic. You could ask them to imagine hearing hundreds of voices at the same time and not being able to block anything out. It would probably help them understand to an extent, but it is limited. Sound overload is not all there is to autism. Then there are things like 'Het Hoofdkwartier' (http://www.hoofdkwartier.org), made by the Leo Kannerhuis. That way people can experience sound and vision like autistics (or at least something that might make them more understanding). But even if you added smell as well, sensory overload would still not be all there is to autism.

These kinds of things are so very limited. No matter how well and elaborately a construction like the Hoofdkwartier is built, right now it cannot really show people what it is like to really be, at any time, an autistic person (even if you don't count the differences and focus on just one autistic person). And I think the imagination (even of the people who are the best at this in the whole world), is not capable of imagining and truly painting a picture of being an autistic person if one is not (some things are just not really imaginable if you haven't lived them).

So then I thought, what if it were truly possible to experience what it is like being (a specific) other person? (including thinking like them, thus completely knowing and understanding how they come to have certain opinions and world views and such. As well as feeling how it is being them neurologically and otherwise bodily). Maybe one day people will invent a machine that can do this.

It is something I've thought about before and wished were possible. I think I first read something like it in a sci-fi story from one of my moms books when I was very young. It might solve a lot of conflict between people (but maybe also create more). But just imagine: really knowing exactly how your autistic child or friend or whatever experiences everything, what their thoughts are like and just everything. I think many people would want that. And vice versa, autistic people would be able to experience really what it is like to be 'neurotypical'. Would we like it? (Maybe some would and some not). Would it make either 'side' want to change? Some might discover things they never imagined (like, some would find out they are much more unlike someone else than they ever though, or: some would find out that they are much more like someone else than they ever though, and much more unlike certain other people that they thought they were like). But I'm getting a bit muddled and confusing there.

Things That Are Meant Well, But Still Feel So Very Discomforting

Sometimes I see people talking about subjects, or initiating projects and such, that are so well intentioned. And the results often indeed have the potential to be very good. Still, I often find myself feeling uncomfortable, sometimes even disturbed. That is because of the almost equal potential for the results to be horrible, and worse: for the results to be horrible, while no one sees it. To many people the results will seem great, no matter if they really are great or not.

Example: The pledge on Change.org, 'Befriend an Autistic Person'. People make a pledge, as stated, to befriend an autistic person. Because autistic people can have a lot of trouble making and keeping friends. True. We often face bullying, loneliness, isolation. Also true. Having friends, even one, can help us, make us happier, improve our lives, even if it's only a bit. True again. So what is my problem with this pledge? It seems awesome.

The answer is: It could be awesome. It really could be. But it can also be horrible:

- If someone befriends someone else just because they think they should, not because they truly like the person, like being around them, doing things with them. I would want someone to befriend me because they like me, because they like being around me. Not because they think they have to, and/or because they pity me.

- if someone decides they have befriended someone, but it isn't mutual. But they don't recognise that it is not mutual. I, and probably others, might not be able to make that clear.

- if someone thinks they have befriended someone, but it is not an equal relationships (in terms of power). If they are more a sort of carer (welcome or not, and whether they recognise it or not).

I probably haven't expressed this in the clearest way, and there might be points that I forgot. But this is why that pledge on Change.org makes me uneasy. The text that accompanies the action does not warn for any of these things. Even if it does, the above things may still happen. But if people are forewarned, they will happen less (so I hope, anyway. I have faith in human beings left).

(and I really, really don't mean to hurt anyone, especially the people who initiated this, but there is a trap that is so easy to fall into, for anyone, even the warned, that you simply cannot post too many big warning signs, often. And it is currently a good example, and the only one available to me now. I need it to explain what I mean.)

Should I Write This About [....]?

I often see people asking the question: "Should I write this about [person I know]? How do I know what would be okay to write about, and what not?"

The person they know may be anyone close to them, in this case.

I think the following is a good answer, and one I would try to go by (although now that I think about it, I don't know if I have kept to this in the past, despite not having written a lot of blog posts yet).

If you think that the person you know wouldn't like you writing it, don't write it. If you think that they would not like reading this, by you, about themselves, don't write it.

Now, of course, this is pretty logical advice, and I'm not the one who made it up. It's often given as an answer to the question at the start of this post. And then the person who asked that question sometimes says: "But [person I know] will never read this anyway (for whatever reason)". Implying that it's then okay, or at least not so bad, to write it anyway. If they say this, they missed the point. It's not about whether they will ever read and understand it, it's about if they could read and understand it, would they approve of you writing it? If it's not right when they read it, it's still not right if they don't read it.

Compare it to stealing (may be too harsh an analogy for some people, but it works): It's not only wrong when you get caught. Not getting caught doesn't mean that it wasn't still a wrong thing to do.

So, I at least will try to imagine what people close to me might think of what I write about them, from now on, and refrain from writing it if I think they would not like me writing it and if they would not like reading it.

NVA Autisme Congres

I attended this year's NVA Autisme Congres last Saturday. I was pretty satisfied with everything. There were several speakers, and I did not find a single one of them in any way offensive. The stands on the information market were generally nice too, but they're pretty much the same each year. With one exception. This year, there was one stand that had two tables full of all kinds of pills, and on the wall they had plastered the slogan 'Defeat Autism Now!". Stark contrast to the other tables full off generally good books, nice toys, weighted vests, helpful tools for teaching, info about alternative methods of communication, information about housing projects, information about how to get help in the household, etc.

The NVA is, all in all, a pretty good autism organisation, in comparison. They talk about assistance, accommodation, stories about hardship too, but hardly ever in a way that makes me cringe. They're about opportunities, pointing people in the right direction when they need to find suitable housing and education and such. They also often promote groups completely by and for autistics. In the before last Engagement (NVA's magazine), they had a guest column by one of the Autism Hub bloggers. Not to say there aren't points for improvement (like the fact that within the organisation, there are, to my knowledge, no actual autistics, and though there are autistic speakers at the Congres, they are not represented in appropriate proportion. It's still mostly other people speaking about autistics. And they focus too much on children, though this year they had a section on adults and admitted on having been too child oriented in the past, with services and circumstances for adults being largely unexplored and not in very good state in the country), and so I let them know what I think in the yearly survey. They do seem to pay attention.

So I wasn't expecting that DAN! stand. We kept an eye on it (my mom and me), and were glad to see hardly anyone even cast more than a passing glance at it, but I still feel very uneasy by it even being present.

On to better stuff: the two autistic speakers they had this time were good. One was a man in his middle years, with a very successful job at an oil company and a university degree, who got a late diagnosis of Asperger and was finally able to work through problems in his marriage and work out accommodations at work. The other was a young man (19), with a diagnosis of MCDD, who had been institutionalised and much more. Two very different 'samples' of the population if you will.

The young man has become a cabaretier (like a stand-up comedian but better :P), and he performed some of his act for us. He has a lot of potential; I thought he was already better than some professional cabaretiers whose shows I've seen.

The first speaker was a scientist who addressed myths about autism. He stressed the need to accept the evidence and move on, that there is no good and much harm in staying with old theories that lead us nowhere. (And I mean the first speaker of the whole convention, not the first autistic speaker or anything)

The second speaker addressed 'behaviours' autistic people might express, including harmful ones, and pointed out that 'attention seeking' is hardly ever what is going on. She said that, actually, she could not recall a single case where that was what was going on. She pointed out that behaviour is communication, and that the cause should be found and addressed.

Though I didn't hear anything that was news to me (I try to follow latest news from all over the world and the science etc.), I was really pleased that I went, and I hope it was educational to other people who attended (it's mostly parents and professionals that attend, my mom and me are a minority together with a few more).

Getting Assistance, and, Freedom

It seems to be one of the hardest things to acquire. Especially if you're living with a partner or family, but even if you live alone. A story about requesting a PGB (Persoonsgebonden Budget; a budget given to you to spend on assistance):

First, you need to realise that you need assistance and what kind. Some of it may be obvious, but it's harder than it seems. No one, including myself, considered I might need assistance to live on my own (or with a partner). There were mainly a lot of things that would have been very hard to anticipate: I had to just experience a lot of things before figuring out I couldn't do them or couldn't do them alone. There were also some things that we might have seen coming, if we had considered this or that and had been thinking totally rationally and all. One good thing about all this is that at least my mom and dad and brother could now start figuring all this out in advance, before the fact, for him (my younger brother). All kinds of stuff they can now already determine for him that no one even thought of for me. I'm glad of that.

Then, you need to go about getting the assistance. There is a lot of searching and bureaucracy involved there. There are some agencies or online groups that can help, but you would need to find those too. When you've finally figured out which people you need to apply with to get assistance with your specific issues (need to apply to different places for different needs), you need to start filling in forms. Might want to consider getting professional help with that, especially if you're not a very fancy wordweaver yourself. After filling in and sending in forms, expect to make a lot of calls. You really need to get those people moving, because it seems like they will do their utmost not to get you the help you need. Including stalling.

Then they will deny that you need the help you need. They will try to lie and say you're not eligible. If you keep pushing they will want to talk to the people who diagnosed you (because they don't believe you when you say you need a certain kind of help). After that, they will try to tell you you need to follow (and fail) all kinds of courses that are totally irrelevant to the kind of assistance you specified that you require (and if you followed any and did not fail they will say you don't need their help, because the courses will have solved your issues). They will then call up your local autism centre and ask them too if there are courses you could follow instead of receiving the requested help.

After you've pushed them a lot (and several weeks later than the amount of time they say they need to judge your request), after your psych (or whoever diagnosed you) has told them you really do need that help and courses won't be of any use to you, after the autism centre has told them there really aren't any courses for people like you and the help you already requested really is the best and only way currently available to help you, they will grudgingly give in.

Now you can rejoice: you will be given a budget for specific assistance for a certain number of hours per week. Yours to spend with whatever agency you think will best give you that assistance.

Mine is for 'activerende begeleiding' (assistance with doing stuff outside of the house, like going places and buying groceries, among other things), and I will get enough money to pay for 3.9 hours of this assistance per week. This means I will finally be able to do sports twice a week (we'll have to figure out something else for the groceries, sports get priority for now): swimming. And maybe I can save up some hours to do something bigger every now and again. That is, if next year's changes to the PGB won't mean I lose my assistance again.

---

On to the second subject:

I've been fairly critical of the agency that gives me money for this assistance and that passes judgement on my claim to assistance. In a better world, I could be critical of them and not have any fear of losing my assistance. Of course, in a better world, they probably wouldn't have tried so hard not to have to help me. I find it sad that I do feel somewhat fearful (though I'm not keeping my mouth shut). Of course, chances are that no one will ever even see this post, or at least no one who would get angry at it.

I would like to feel free to talk about not only positive things, but also negative things I see about the agencies that give me my disability income and my money for assistance. Instead I feel very uneasy.

I depend on these people, and there is no problem with that, and since these are things I honestly need, there should be no feeling of guilt, no fear of speaking freely. But they can make one feel like a parasite, like one's every move is being watched, like one is not free to speak as one wants, and definitely not free to do as one wants: I feel the need to perform, get a job, any job they find for me and try to keep it even when I feel that I am performing above my ability and will not be able to keep this up and stay healthy, feel the need to prove myself. I'd like to be able to finish my studies at university, get my Master's degree, find a job at my own pace that I can keep up and do from home and get all the help with that I need, write a book for which I have had the idea in my head for years now. But I don't know if I'll be allowed.

Not Unhappy, Just Fascinated

I've realised, after taking a look at my own blog, that it might seem as though I only write about 'negative' topics, things that go wrong or that I have trouble with.

This is not actually the case. Some of these things might bother me somewhat some of the time, but mostly they don't. I'm used to them. I write about them not because they bother me, but because I'm just crazy interested in and fascinated by them. Not just my own issues either, but others' too. I restrict myself to writing about myself, though, would feel rude to write about other people and it would be inaccurate anyway, since I can only observe from the outside.

Diseases and disorders (or however you like to coin these things, I have to call them something so for now this is it) have always been one of my big 'perseverations.' (Neither that term nor any other sounds good to me, but ye gods, the Dutch word 'fiep' is the single worst of them, never have I heard a more derogatory and dismissive and looking-down-on term).

I used to read medical magazines (that they publish those official article thingies in written by doctors and scientists) from a young age, and any other books on the subject. If they had pictures, all the better, since I couldn't always understand medical lingo.

Long before I recognised myself in the descriptions and lists of symptoms, I had been reading about autism (some of those books were pretty bad, too, but I didn't realise that then). Finding out I was autistic myself was actually quite... exciting to me. For a lot of people this may seem strange, but I was quite glad. So, apart from being autistic, autism is now one of my big interests, grown out of the still standing interest mentioned above, to be a special interest all on its own. And that is mostly why I write about it and stuff I think might be related.

A lot of stuff might seem horrible or negative to outsiders, but to me it's mostly neutral, sometimes not so nice, sometimes very nice, and almost always fascinating. Outsiders will not always be able to tell which of the three/four I'm feeling about a particular subject. For instance, not having a feeling of 'this is me' when you look in a mirror and your reflection seeming like a stranger to yourself might seem pretty bad, but to me this is a neutral-to-positive-madly-fascinating thing. So, far from a bad thing.

The Work Situation

As I said, I'll elaborate on the whole work thing.

So, a few weeks ago I noticed (yay, I actually noticed!), that travelling to work and spending all day there was... not working out. Too much stress and overload. I had no 'spoons' left (so to speak, for those who don't have a clue, I mean Amanda Baggs's modified Spoon Theory), hadn't had any for a while, really, and was borrowing against not just tomorrow's, but next month's and even further ahead. It had to stop right then or it would all come crashing down eventually. Crashed just a bit anyway, but it's comparatively minor and I managed to actually regulate this whole situation, first time ever, instead of letting it run its course to inevitable doom. I still feel quite proud.

Anyways, for some weeks I'd been slow, lethargic, unable to concentrate. I see this now, but in the midst of it I honestly didn't notice at all. I'm quite slow and usually oblivious at this stuff. I also had some old physical complaints rearing their stress-related heads again, noticed, but not connected to anything else by me. (Referring to IBS complaints, mostly). To top it all off, this was during the high season of my hayfever.

So when I finally connected all the dots (some other people had been noticing just a few things here and there, but none of them knew what this all meant and what it leads to when this happens to me), I knew I had to either step in and do somethign this time, or let it play out as usual, which means badly (just 'disappearing' for most people from one day to the next: staying home, no e-mail, no phone, pure retracting into myself, cutting contact with almost everyone and minimalising it with the rest). I could try to describe how it was starting to feel on a daily basis and the feeling that finally alerted me, but truth be told, I really can't. Can;t shape words that well around just anything, so this is what I manage.

So, I managed to express what I could (not very much) to my BF, who notified my jobcoach, who notified my work, there were conversations and arrangements, and now I am able to work completely from home. It wasn't a 'burnout', or an energy issue. I can work just fine, I just couldn't deal with the daily overload caused by travel and having to... well... 'exist' at the workplace and such.

There was nothing wrong with the work, or the people at work, or the building, or anything, I'm just not really compatible with it all in those doses. I actually quite like all the people there. They all like language too. It's refreshing.

So, that's it, really.

Body & Face = Not Me

I was brushing my hair this morning, standing in front of the mirror. Something struck me again, and I figured, why not write this down in my blog? If anything, I'll be able to read back my own thoughts later.

My face is not mine. By that I mean, when I look in the mirror and see my face, that is not me. I do not see 'me'. Every time, still, I go: "Oh yeah, this is what my face looks like." It's like looking at the face of a close friend or relative: I know it well, I recognise it, I'm used to looking at it, but it isn't 'me', it doesn't give me a feeling of 'this is myself.' This goes for the rest of my body too, really. And I've always had this. It actually used to be worse when I was younger. It got a bit better after I dyed my hair a different colour.

It's not that I have problems with face recognition (including my own), quite the opposite. I also have a superb memory for faces. I'll forget your name in the blink of an eye though, once we don't have regular contact. I can recognise which one is me in photo's without problem, but it's just that I know that the one that looks like that is me. The way that body+face looks in that photo looks very odd and sometimes jarring when it hits how I felt like I was in that photo, in my memory. It doesn't look like what I felt. It looks like I'm watching this other person whose face of course I know well is there, only that person that looks like that is me. I know it's me, but it feels a bit like someone I know very well is standing in the spot where 'me' should be. Only what should that 'me' look like?

I don't really have an image of me at all. Maybe two hands in front of me and the frame of my glasses at the height of my eyes. Mostly nothing. When I think of me there is no physical thing there. I wish I could play life the way I play computer games: in third person. Other people have physical presence in my mind, but I don't. But then when I see my body, I know that I do. Of course I always 'know'. But in my mind I don't, in my deepest sense of my presence (not talking about sense of identity/personality, by the way, I dare say that is very well defined indeed here). So, there I have to look at this body that rationally I know is mine and I recognise it, but... it's just not me.

Now, I'm not explaining it as well as I wish. I'm coming close to describing it, but it's like I just can't really hit the bullseye. So I hope that it's somewhat understandable or imaginable for anyone else but me that happens to read it.

I have always had a poor sense of body. It is hard to tell what exactly is wrong or hurting when I am in pain or ill, and it was even harder when I was little. It's hard to tell what and where sensations are in general. I used to feel like I was in some sort of cell, or maybe locked into some hunk of flesh, and looking out of two little windows. I can still feel like that, but I've worked very hard at 'being' in my body more, and there has been some improvement there, though it's still not very good. My coordination and gross motor skills are also quite bad (fine motor skills not so bad, though slower than others). I wonder if that is at all related.

Explanations, trying to put stuff into words

So, recently I've had to face the fact that I wasn't able to keep up doing my job in the same way as before.

Recognised the signs of major breakdown/shutdown just in time (as opposed to the usual 'way too late'), and had my BF call up my job coach. I dragged myself through a rough couple of weeks (with help); stuff has been arranged, and now I'm working from home for the remainder of my contract. (Note: the job was fun and so were the co-workers, not to make anyone think something negative happened. Will try to explain all about the job situation in a follow-up post).

What this made me think of, was the way I used to (and still) get so frustrated/angry when someone asked me a question about my day or some such, or asked me to explain about a situation I was in. I'd slide right into meltdown, unless I could get myself to just walk away, or half-yell just the word "no", or something like 'don't ask me questions.'

I have finally figured out what happens. Here it is:

It's one of two things: either the question is too vague/unspecific or whatever for me to answer (too many things they might mean, or can't figure out what they mean, like "How was your day" or "How are you"), or people ask me to put something into words that I am unable to put into words, but they expect me to be able to. The realisation that they might think I'm deliberately not answering for some other reason just makes it worse, adds anguish to the mix. That they think I'm unwilling to answer instead of unable is not far-fetched: I am verbal and usually 'good with language'. Equally frustrating is the thought that they might think I'm not answering because I don't really know what's going on myself - I do know, I just can't frame words around it.

Being verbal, even being good with language in general (picking up new languages, my own language), does not mean you don't have problems with both language expression and language comprehension (both in speech and in writing, by the way). Many of these blog posts may therefore look messy and might be hard to understand, while I was capable of getting A's for essays and fictional pieces when I was still in university. This is because here, I try to explain things I wouldn't be able to say to someone face to face at all, but still have problems in writing too, even if it's easier.

So maybe now I can come up with two stock phrases/scripts for when someone asks me a question that's unanswerable for either of the above reasons and prevent the frustration, since that's as unpleasant for me as it is for the recipient (really, it is).

Saturday Stim-phrase, 12, and miscellaneous

This weeks stim-phrase is from Sweeney Todd (the film/musical).

"Toby! Throw the old woman out!"

And:

Last Sunday my new nephew Malik was born (my BF's sister's baby). Went to see him yesterday. He slept all the time we were there, no matter what we did to him or around him. Then he's awake all night long, keeping everyone else awake too :P.

We saw the new Batman film last Thursday. I liked it, made me want to see the first Batman film with Christian Bale as Batman again.

Attended Castlefest today. Bought the 25-year anniversary edition of Brian Froud and Alan Lee's Faeries, and bought some 'medieval' candies and cake. The book smells of incense, which I like. After we saw all the stalls and some of the entertainment, we sat on some grass for a while and then left. Castlefest especially was stressful and overloading no matter how much fun. It didn't help that I had to walk on grass a lot and near the end sit (!!!) on it for a while (I can't stand the sensation of grass or other earth+growth under my feet, let alone any other part of my body). I could feel the stress and overload lurking all day, but then I felt myself slipping close to shutdown or meltdown, hard to tell exactly what it would have turned out as, so we left for home. The people we were with stayed a while longer.

Now I kinda need a few days rest, but I don't have any: Sunday is RP day and then Monday is back to work.

Saturday Stim-phrase, 11, and jaw surgery

I had jaw surgery last Monday (mandibular sagittal split osteotomy). They pulled my jaw forward, rather than pushing it backwards; I had an overbite that was recently getting out of hand. It's a rather simple procedure, which they perform many times a week in that hospital. You stay for one night and then you're sent off home, unless there is some complication, which is rare. So I was home on Tuesday afternoon, with X-ray pictures showing the titanium screws that are now in my lower jaw (3 on each side), and a hugely swollen face despite the stuff they give you to counter the swelling (icepacks, ice-cold water and something in an IV). They pulled my two upper wisdom teeth while they were at it, too.

Unfortunately I'm one of those people that swells up a lot after a procedure like this, heh. I recovered very very quickly from the general anaesthetic, though. Wasn't extra tired a few days afterwards either. The swelling is now slowly but surely getting less. We're taking pictures every day, I think I'll do a post about just this later, with pictures of the progress, when my face is completely back to normal (or well, slightly different than before of course, but no longer bruised and swollen).

My jaws are not wired together (they don't have to do that anymore with this procedure now that they have the screws), but I have 'surgery braces' (they put in different wires with bigger pointy bits for the elastci bands), and two elastic bands that keep my mouth relatively closed. I take the elastic bands out when I eat or brush my teeth. Currently in my first of five weeks of liquid/soft food only. Can't chew, so I am allowed to eat only stuff I can swallow as is or can break apart with just my tongue to the roof of my mouth.

So, onto the next stim-phrase. This one's from Monkey Island 3 (an adventure game):

"A pirate I was meant to be, trim the sails and roam the sea!"

It's the refrain to the song Guybrush's crew sing ([crew] "We'll fight you in the harbor, we'll battle you on land, but when you meet singing pirates..." [Guybrush] "They'll be more than you can stand." Heehee. http://www.youtube.com/watch?v=AawQvD8L_h4).

Saturday Stim-phrase, 9

Aaaaand, I forgot last week again...

Another one from Psychonauts (I could go on with this one game for quite a while):

"Curses! You're a stubborn little ball of phlegm, ain't ya? Well, that head cold won't protect you forever, little girl, and when it's gone you'll be sneezing a different tune."

That's one whole line said by Dr. Loboto to Lily, but only the blue bit is my stim-phrase.

"Normal"

About 'pretending to be normal' or 'passing for normal'. I've done this, or tried to do it to an extent, is more like it, for much of my life. I've recently stopped because I can't keep it up and do anything else meaningful. If I do try to make myself do it and do all the other stuff that needs to be done in life, or that I would like to do, I will eventually crash. Sometimes after a short while (weeks), at one point I did it for a few years, though that does not seem to be achieveable anymore.

I can't do most of the stuff I see other people do, I can't even see (hear/feel) some of the things. I don't mean things like jobs or school subjects, but what to say, to be 'one of them, like everyone else'. Not even just what to say, but how to say it, what to make your voice sound like. And not just that, but what to make your face look like, what to do with all the little muscles, do it at the right time, not too much, not too little, move your eyes the 'right way', look in the right direction, at the right time, for the right amount of time... And to move my body the 'right way'. To hold my body the 'right way', move my arms and legs the 'right way', move my feet and hands and fingers the 'right way'... All those little gestures and looks and sounds... They seem to be a subconscious process for them.

But this is what I mean with appearing normal. It's not really about your interests or how good you are at something, these are the things that make you stand out, that make others know that you are 'not like them'.

I have an analogy:

It's like a dance. There is this tribe of beings and they do a dance. There are steps and movements and a pattern and a melody. Then there are other beings, of which I am one. My dance is different. My body looks different so it's not so strange that my steps and movements and patterns are different, even when I dance to the same melody. When I try to dance like they do, I must contort and twist my limbs to make my body look more like theirs, then try to mimic their steps. That is hard, and even when I do it as accurately as I can, it looks different. Some parts I simply cannot mimic. Other parts I don't even see, so I miss them entirely in my dance. I can't always hear the melody or recognise it as a melody.

Even when I mimic them, even at my 'peak', as accurate as I get, it is still doesn't really look like their dance. My movements, involuntarily, mean something else to them that what I was trying to make them mean. Is it even desirable to mimic? My body hurts from tryingto look like theirs and from trying to move like theirs. I am stressed out because I know that I am failing, their melody is making my ears ache. I know that eventually I will not be able to keep this up anymore and I will crash. So much agony and my dance doesn't really look like theirs anyway, no matter how hard I try. I realise that if I dance my own dance, they will still interpret my movements according to the rules for their dance. The interpretation will be different than when I was trying to dance their dance, but it will not be any more flattering. But at least I won't be hurting and stressed out. I won't crash after a while.

(if someone else has already used this analogy before: I swear I made this one up myself and I can't remember seeing it before, but of course, I may have read it and forgotten it and been influenced by it without realising.)

I've stopped trying to be like others a while ago. I've felt better since (not that I felt completely awful before), but I have found that I cannot seem to stop old habits when out amongst people: the habits of camouflage have become so ingrained that I do them automatically. I don't like this: I'm more stressed when I do this, but I cannot seem to stop. I wonder if it will ever wear off. Now, I have to consciously stop my camouflage behaviour and force myself to do what I would really do...

Saturday stim-phrase, 7

I also tend to pick up stim-phrases from games I play (PC games). There are a lot of games I've played, and a lot of phrases I've picked up, so if I'd list them all I'd probably have a year's worth of weekly stim-phrases at least. I won't, though. I can list a few, however. Like, from my favourite games.

Here's one from Psychonauts, a great game of mixed genres. I totally love this game and have played it at least ten times so far:

"I am the Milkman. My milk is delicious."

If you haven't played it and like PC games, I suggest you check it out. Even if it's not the type/genre of game you'd normally play, the chance that you'll like it is very high. It's not my usual type of game either.

Saturday stim-phrase, 6

This time it's

"When stone is dust and air remains the only haven you can trust"

with thanks to the Sisters of Mercy (the band, not the order). It's from their Temple of Love.

This one contains a lot of words that I find pleasing in sound and in my mouth, when spoken. Also the way they sound in a row, not just as loose words. Sometimes it's the way they stick together. Sometimes it's the pause between them.

Saturday stim-phrase, 5

It's the last of the Italy stim-phrases.

"Bene Gesserit"

I read the Dune series a long time ago; this popped up during my holiday in Italy :D.

Saturday stim-phrase, 4

Got visitors last week, and was too tired to make a blog post, however short.

So here is stim-phrase nr. 4, also from Italy.

"Ripa di Porta Ticinese"

I think I saw it in a brochure of streets/buildings thart were worth visiting in Milan.

Saturday stim-phrase, 3

Italy stim-phrases on the way.

The first:

"Lanza, fermata Lanza."

Guess what we'd been using to travel through Milan :P

The first stim-hrase post had a different name, if anyone still wants to see it, go here.

Saturday stim-phrase, 2

This week's stim-phrase:

"Elevated levels"

This is a relatively old one, but not as old as the last one. I don't know where I got this one from, but it's probably some combination of random things I've heard because they sound good together. That or it's from a hospital show.

Next week I'll start a short series of phrases I picked up on holiday.

Weekly stim-phrase

I have these phrases, sometimes full sentences, that I repeat over and over in my head, simply because I like the sound. The stim helps calm me down in stressful situations and has some other, for me hard to define, regulatory purposed, but sometimes I also do it for no particular reason. Some I make up, or put together from other phrases, but many are things or parts of things I've heard or seen in other places.

I have read of others who do this as well, either silently or out loud. So I was thinking of setting up a stim-phrase-of-the-week kind of thing, where I'll post one each Saturday. Anyone who has stim-phrases too, or people who are just interested or whatever, can come and read it if they like. (Not that many people actually read this blog, but if my audience ever grows, there's always the archives :D). I'll post my own, but if anyone has suggestions for me to post, or wants their own posted one week to or something, just leave a comment or e-mail me (though I don't know if the latter is possible. Is my e-mail available around here somewhere?).

So I'll start with an older one:

"An army of ants... is a formidable force" (with thanks to the Discovery Channel, Animal Planet).

I love the sound of this one, and also the joke.

A long-time stim

This will be a bilingual piece.

Dit is een tweetalig stuk.

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Al heel lang haal ik de letters in woorden door elkaar. Dit begon toen ik klein was, maar was toen nog geen echte stim. Ik deed het af en toe. Tijdens de middelbare school deed ik dit ineens veel vaker; het kwam ineens weer op toen ik dit deed met mijn vriendengroepje. We vonden het best grappig, vooral wat je van de voornamen van mensen kunt maken (vind de voornaam bijvoorbeeld eens in deze woorden: gein, kersen, je oren). Ook na de middelbare school bleef ik letters door elkaar halen, maar nu vooral de eerste letters van twee woorden (of in woorden die geen samenstelling zijn de eerste letter(s) van het woord en de eerste letter(s) van een volgend deel van het woord), die wissel ik om. Dit werd één van mijn huidige stims. Ik kan bijna geen woord of korte zin meer zien zonder dit te doen, of het resultaat nou grappig is of niet.

Hieronder een lijstje van een paar woorden waarbij het (vaak qua uitspraak, niet qua schrijfwijze) behoorlijk grappig is om de eerste letters om te wisselen.

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For a long time, I have been mixing up the letters in words or small sentences. The results can be funny, usually spoken, not written. This started when I was very little, when it was just a fun pastime, not yet a stim. During secondary school / highschool, this pastime flared up again, because it became a small fad in my group of friends. We especially liked seeing what could be made of people's first names (try to find the first names in these examples: garde, haras, lime ass). After highschool, I kept on mixing up the letters of words, but now I primarily switch the first letters of two words, a small sentence, or in non-composite words: the first letter(s) of the word and the first letter(s) of another syllable. This has grown into a real mental stim for me. I do it almost constantly, whether the results are funny or not.

Below, a small list of a few words that become quite comical when the first letters are switched (often in pronunciation more than in writing).

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Dutch / Nederlands:

• Huiskamer
• Muurschilder
• Als dank voor uw steun
• Rijn en Gouwe
• Vroom en Dreesman
• Mondkapje

Engels / English:

• Castles and lakes
• Butterfly
• Ladles and spoons
• Cross-over map