I am in a lot of pain lately. And I regret not being there for you in your final days of pain. I couldn’t. Pain is selfish, isn’t it? I am sorry.

I am leaving home again. But I am leaving to follow my path, not as a victim but as a victor. The gift you left me has served to protect me. I never thought about your words to me, not until now, when they all except for one turned against me and tried to push me out and leave me bereft. Only then, did I remember your words. You said you will leave me with a gift that will protect me against her and the others. And how true they proved to be. You are protecting me even now, though you are gone. Mother cannot annihilate me, she tried, but I am still here. Because of you, because of your legacy to me. You have provided a roof over my head no matter what happens

Thank you. I miss you. But I know this is the only way for me to find myself and become who I am meant to be. You will be there in everything I do. Now, I can take you with me everywhere I go..

There are many reasons, of course, nothing is an isolated cause. However, one major spanner in the works for almost anything and everything in my life has been pain. Yes, physical pain. Long term, lifelong in fact, and it isn’t going to go away, not unless there is a miracle, or I die.

Pain is draining, to put it mildly. Sorry if I don’t seem very empathic or sympathetic to your coughs and colds, sorry if I become immediately distant both physically and mentally when you are down with any kind of infectious conditioin like the ubiquitous influenza etc. It’s because I cannot bear your moaning about something that, to me, is really a piece of cake. It’s because if I happen to catch whatever it is you’re spreading around so blithely, I will most definitely suffer a whole lot more pain than you’ll ever know or understand – until you develop cancer or some excruciating condition, that is. And forgive me if my sympathy is contrived when you complain to me about your sore throat and occasional mouth ulcers. Honestly? I don’t give a damn, so shut up already please, and stop whining.

It takes all I can muster to get through each day. Small things you never even notice, like opening your mouth to yawn, or eat, or brush your teeth, or laugh – for me, each of these little movements can induce sharp pain in my jaw joints, tongue, cheeks, inner lips etc. How about holding a knife, scissors or carrying a shopping bag? Some days, these too spell pain. Inflammation is the culprit. And Behcet’s is all about inflammation. No, my ulcers don’t come from viral or bacterial infections, they’re a result of burst blood vessels and inflammation breaking through mucus membranes. I cannot remember a day of life without pain, though high doses of prednisolone have helped alleviate the pain much. I like the euphoric feeling of being able to do little things without sharp shooting pain as a reflex result, but the side effects are frightening and I have stopped regular steroidal treatment. So, I chose pain, instead. And of course, painkillers are my best friends.

Not another rant about Behcet’s, you may say? And how can I blame you for thinking this is all a melodrama? I have never met anyone who has never suffered from chronic incurable pain who yet has enough empathy to understand what people like us go through. Neither autistic nor neurotypical. And so I keep my melodramatic rants to this place. I never speak about it to anyone in real life, not in graphic realistic terms anyway. I have learnt to shut up and just get on with the yawning, eating, drinking, teeth brushing, pencil holding, cutting, hobbling and whatever else, with as much dignity and silence as I can muster. It works. So well, in fact, that nobody even notices at all, how tough it is for me to get through a simple meal. I am such a bloody good actress, I am. I look great, I can even be fabulous, glamorous, a diva and a bitch. How cool is that?

But pain is always there to remind me of all the things I know I cannot ever do, and to exact a price for whatever I manage to do. And everything I do achieve, even if it’s for a split second, is a mountain I have climbed. Including this post. Because my eyes and my head hurts so badly, but I cannot take the stronger painkiller, since I have already taken another drug for something else.

Activists are people with enough energy to devote to their cause. I can never have that energy. I respect activists. But sorry, my friends, I am tired right now of your rants, your wanting to change the world blah, not because I do not intellectually support your causes, but just because the reality of my life is too extremely different from yours. And I am too exhausted from being empathic to yours, while you will never give mine a chance. In any case, I don’t need you. You cannot lessen my pain. I have no cause to rant about, I have to concentrate on getting through the day, each day, doing things you do too, but you don’t even think about, and doing things you do which you subtly boast about as well. Even in my sleep, I have to adjust to shooting pain. So, while I like to read about this or that movement and mentally support this or that cause, I cannot afford to give it the kind of cogency that you lot seem to do. Forgive me if I even sometimes sound mocking. Perhaps I am. If you only knew…

Pain has no empathy for the healthy. And health has no empathy for the ones in chronic pain. That’s just the way it is. So don’t even claim otherwise. You’ll only come across as incredibly stupid, or insensitive. OK, enough of my pain conundrum. Time for bed. And have to be careful how I turn and at which angles I lay which parts of my body (inducing veritgo, triggering pain from swollen joints in various places etc ect ad nauseum). Having hypersensitivity doesn’t help, does it?

As for the big debate – It’s really no big choice, I choose autism any time over pain. I don’t care what it is you people rant and rave about, for me, in my little microcosmos, autism has been a blessing, without which I may yet have not been able to deal with this amount of pain.

The School Bully was brought to the fore of our animated reminiscences.

I was the new girl, I came into the scene at Grade 3, when alliances and enemies were already made, formed and more or less sealed for life. Yes, that’s the way with girls. They decide early, with their innate sense for social relationships and instinct for sizing up the people they wish to form alliances with. And the School Bully was, by then, the social outcast, one abhorred and at the same time feared.

I was sickly, always in pain and battling Behcet’s, and an undiagnosed autistic girl, which made everything all the more terrifying and confusing.

Add to the above, the vast difference in my social and economic background from the prevalent one in the new school – I was ripe for the picking, for any lurking School Bully.

Her name was Sharon. She was the one who mocked me the loudest, said the cruelest things, and then before I knew what was happening to me, she decided to become my ‘Best Friend’. What followed was 27 years of an almost exclusive friendship, and the other girls who demonstrated some interest in me soon dropped away like dead flies. I never knew why, until now, nor did I care much, being the typical Aspie girl just trying to survive school.

Now, almost 4 decades later, I meet the other girls again. These are a select few who have obviously been interested in me from the beginning, because I do remember some of them with fondness, despite never getting close.

And then, I hear more accounts of our childhood school life, and light slowly dawns. They all asked about Sharon. They all knew (in more ways than I did) about her friendship with me. Of course, they all wondered aloud what happened between us – there was an acrimonious ‘breakup’ almost 10 years ago now and we are no longer in contact, nor do I ever wish to be. Ever the socially aware women, now that they’ve established that Sharon and I are no longer Best Friends Forever, they begin to tell me things that I never knew. Things about her, and about me, from as far back as Grade 3.

Sharon was the School Bully. She had been bullying, sometimes very viciously, other children since Grade 1, before I came along. I was not surprised, since she did continue to bully others throughout our school life. What I didn’t know was that she had deliberately put the others off trying to get close to me, she disallowed any other alliance apart from hers, and that was why the others dropped away. Throughout our 27 year long friendship, Sharon also constantly expressed revulsion for all our school mates. So, I never kept in contact with any of them, until Sharon exited my life. At the gathering, they all told me that I was the Odd Kid. I knew that too, but what I never knew was how much the others were interested in me. Apparently, my multiple quirky talents was a big draw. I was reminded of a series of comic books that I created – stories and drawings – and sold to the girls in parts, each one ending with a cliff hanger so they would buy the next installment. I donated all the money to the SPCA. They told me about sharing seats in the bus on the way to swimming classes, about buying and eating snacks afterwards along the route back to school from the pool. They told me about how I would be scintillating company one moment, and suddenly withdrawn and cold the next moment. (I still am that way, still the diva and star of the show, but I’ve learned to handle the great contrast better.)

I am glad I went to the gathering. I discovered things I never knew, positive things about myself through the eyes of others. The irony is that these are people I never took time to get to know or appreciate, because a) it didn’t matter much to me, my social quota was already maxed out by Sharon’s presence, and b) Sharon prevented any other closer relationship from forming between myself and another girl. Now, at last, I appreciate these women. And yes, we have all mellowed too. Many have teenage children, the single ones their successful careers. And again, I am the Odd Kid, going off on a scholarship to pursue my Ph.D at this age, and doing weird stuff (in their eyes, weird but fascinating).

What struck me was how much regard they had and still have for me, and now in our eclectically evolved, assorted circumstances, they even look at me with some envy. I never knew this. And I was quite touched. What irony, the one girl who occupied more than half my life, was the one who didn’t really appreciate me for who I am, had little respect for my right to exist as an individual. I then realised how this showed my Asperger’s in bright glaring light – the lack of social awareness was so obvious. My entire Grade School and High School years went by without my understanding or being aware of 90% of the social features around me. Naive? Yes, most definitely. I had no idea how to choose a friend, and I suppose I was lucky to be stuck for those years with a Bully with a Heart. Yes, she was genuinely fond of me, I guess, but that will be another story, another analysis, for another post.

I lived much of my social life in a hazy mist. Is that good or bad? Funny enough, I am happy that way. I have no wish to know things that I am not interested in. I am lucky to have more than enough friends than I can handle – both close and loyal, as well as those just bobbing along the surface. So, the mist is good for me.

I recently wrote a detailed letter of complaint to a particular branch of public health service, highlighting two key points of mismanagement / improper advice given by the doctor. I felt it was necessary to be as detailed as possible so that the person on the other side reading it will be apprised of the full facts. Nope. WRONG! People in this universe don’t like detail. They become defensive and upset, and they reply with irrelevant desperate jabs in the air just to fob you off and at the same time tell you it is your own fault that shit happened to you. So, the person on the other end completely did not understand the point of my letter, i.e. what I was after. The reply that came infuriated me, but of course, what else should I have expected, really? I’ve lived inside my mind for over 46 years and I still don’t learn?

However, the strange thing is this: My university professors understand me perfectly, my writing and my expressions, my detail focus and my quirky mind, all are perfectly acceptable and understood. So, perhaps academics too live in a parallel mental universe to the one our bodies currently occupy? If I were really so lousy at expressing myself, how could my thesis and my work earn two Ph.D scholarship offers from very decent universities (one rather high ranking)? Maybe most academics are Aspies. Or different-minded. Or just more intelligent than the average Jane or Joe (who happen to be in the majority)?

Yet, there are those in the field of Autism Research who just cannot get it right with us Autistic folks. So the above musing cannot be right, can it? OK, don’t start me off on the Grand Empathy Debate – personally, I think both sides (researchers vs Aspie self advocates) are now going round in circles. Yes, we need a common ground, a common system / set of criteria for which to measure this wonderful thing called Empathy. Both sides should sit down and create a blueprint.

But, wait, we live in parallel mental universes. So, will it ever be possible, this dialogue? Empathy is missing between the two universes. It is both our faults, and yet nobody’s fault.

Meanwhile, this Aspie Chick has to just deal with it.

Unwillingness to accept another for who he/she is, subtle remarks and insidious manipulations with the aim of molding the different other into a shape and form more acceptable to oneself, making derisory comparisons, fierce but silent competition with the aim of putting down the different other – these, to me, are all manifestations of bigotry in our daily humdrum lives.

Have you never been guilty of this? Not even the minutest? You lie, then. For there is never such a state of utter innocence inside humanity.

Trampling straight into someone else’s bedroom with mud caked walking boots are a long, rigorous day hiking in the rain drenched woods? We’ve all been guilty of this some way or other. Myself included. Our own opinions are always the penultimate Golden Standard in our minds. Whether we choose to admit this or not. Tell me this is not true of you, and I will pick out, from your words and actions, your hypocrisy. In the process of denying someone else’s valid existence within a state of ‘otherness’, we commit bigotry. We say to that different other, “You really do not matter at all. Who you are, what you think, your dreams, your suffering, your rejoicing, all these are only fine with me if they align themselves closely to my own. Anything outside of my frame of reference or imagination (or lack of it), I cannot accept as valid. Why? The reason is, I do not wish to make the effort to step outside myself, look at myself, and I shudder at the thought of being faced with the possibility that I am hideously wrong. So, I conclude, I am almost always right. Whatever failings I have, I am right. I am not a bigot, he is, she is, you are, oh sir, not me.

I do not know how to deal with my own over-empathic responses to every little mood swing that people around me display. I want to go into shutdown mode, but I cannot. I have trained myself to be so ‘normal’ now that I find it very hard to switch to shutdown mode. I unconsciously force myself to keep going, bearing up under the crippling load, and it hurts so intensely that I am longing just to run away from everyone to a place far away where I can just lie down and rest without feeling guilt covering me like a suffocating cloud.

Too much empathy, too little skill to deal with it, and then Behcet’s rears its ugly head… Ulcers… Vertigo… Exhaustion… Arthritis… Fever…

I have many things waiting for me to do, things I ought to do, things I love doing – if I can only shake off this awful synchronicity with other people’s negative emotions.

Please, let me go. Let me know one day of sensory balance, one day of painless existence – just one day please? *ugh* The rash is beginning to develop all over my fingers and hands once again.

C’est ma vie.

Christmas / Festivity Music:
I have perfect pitch. I also have hypersensitivity. BAD BAD BAD combination during festive seasons, where horrible cheap music permeates the surrounds, and if one needs to do so much as just pick up a bag of tomatoes or beer from the supermarket, SENSORY HELL BREAKS LOOSE! O Come All Ye Frustrated! Jangle Damned Bells! I hear each and every note, my brain is trying to name them too, I hear the awful whining singer go out of tune, and being a trained musician, I become increasingly upset and stressed by the utterly cheap and crass arrangements (using synthesizer sounds from yesterday of course) looping and looping endlessly. My hearing is being literally raped and plundered. Just an ice cream tub later, I run out of the mall trying NOT to scream, exhausted and deflated.

Crowds:
Why do ‘normal’ humans do these ridiculous things to themselves all in the name of FUN????? I don’t ‘get’ it, but yes, I do technically grasp the concept that ‘normal’ humans like pressing against each other, probably unable to smell each other’s putrid sweat and unwashed hair, rancid clothes and dirty shoes, and ‘normal’ humans like traffic jams, too many lights, too much alchohol and resultant bad behaviour, spending too much money at one go buying stuff they don’t need or want (and nobody else really does either)… And making a lot of noise together, as they all share germs (festive seasons are always flu seasons too) and get sick together. WHY??? Dunno… that is all very ‘normal’, I guess. Me, I am getting exhausted already thinking about stepping into the mall to get those drinks that I had forgotten to buy yesterday when I completely lost my memory and had a blank out at the supermarket – you know, that Aspie “get me outa here” panic? So, tomorrow I have to dive into the pits of hell to get those drinks. Why? Because the day after, my brother-in-law is throwing a luncheon party for his siblings and well, they need to drink something, don’t they? Grrrrr!!!!

Then… Just when you think that all hell has broken loose, and there couldn’t be any more hellish stuff to face… Voila! Behcet’s is triggered… fever… ulcers… arthritis… Grand. Just swell. Literally so.

And here is a well written, layman’s explanation, of the neurological condition that is the root of all my “bad” behaviour…

Inside her brain – by Shelly Nason

Yup, blame it all on my brain… hey, mum, but it is TRUE! Now will you believe me when I say that slaughtering chickens over a tub of boiling water makes me puke from the horrible smell of it?… Not unlike Christmas, that. Or New Year celebrations? Or birthdays?

Nevertheless, HAPPY CHRISTMAS AND FABULOUS NEW YEAR, everyone!

I’ve come this far. A long way more to go. A lot of anxiety now. Even something as good as this can tie my thoughts and feelings into tangled, confused mess.

But savour the moment while it lasts. An honour. One I do not scoff at. In fact, to me, it is yet another vindication… for this Aspie kid struggling along with the horrors of Behcet’s.

i want love that binds, but i want to be free

fresh shucked oysters, Bruny Island

a quoll… “please leave me alone”, said the non-rabbit…

fishbowl

i hate airplanes… what ever happened to the word ‘aeroplane’?

white noise… psychedelic noise?

does anyone want to buy my antique violin please?

money…

head hurts… is it my glasses or the asthma?

anxiety attack

won’t make things better

blue eyed bambino… did i never ? no i did not never… i did…

what are mirror neurons really mirroring?

echoes… real or imagined?

bikinis… fat belly… jelly shoes

un mouton

et

la petite princesse