Baked beans and sunny-side up egg for breakfast today. I am trying out an old drug that I once reacted badly to, more than thirty years ago, and I needed a more robust breakfast instead of just a small bowl of rice bubbles. The dosage this time around is one third of what I was given before, and I am now almost 10kg heavier too, so I hope I will be fine and this might just be a palliative answer to one of the many issues I am battling physically.
Sometimes, I wonder whether some physical and autism sensory symptoms are more interwoven and intricately bound than I care to notice? I am well aware of the effects of sensory overload on my physical state, but perhs I should be more proactive in dealing with some triggers, rather than merely resorting to the age-old ingrained ‘grin-and-bear-it’ methodology? After all, I developed this self-intervention approach in a time, space and situation four decades ago where sensory idiosyncrasies were unheard of.
I read this article on Mashable this morning, while wondering about gadgets like noise canceling ear plugs and tinted spectacles etc. I have already begun to wear head scarves because of the acute sensations that colder temperatures bring to my head. Even when the rest of my body doesn’t feel cold at all, somehow, the head feels as if pierced by a giant icicle.
Check it out in this link, 5 Autism Simulations, or the individual videos below.
In the old old days of yore, my mother only had one description of my sensory meltdowns – tantrums. I was smacked, scolded, punished and dealt with in ways which would now constitute child abuse, by teachers, mother, and older siblings. I grew up thinking this treatment of me was right, and that it was somehow my own fault for being born ‘wrong’ and it is my bounden duty in this lifetime to ‘right my own wrongs.’ A confluence of ignorance, stubborn lack of empathy by neurotypicals who would not tolerate ‘contrariness,’ upper middle class social imposition, and far right religiosity weighed in on me. They still do – it isn’t easy to shake off forty years of indoctrination, is it?
The lack of interest, understanding or just simple acceptance of hyper sensitivity – whether in the context of autism or just anyone with hypersenses – prevails today. I have lost friends who I treasured and still do, just because they refuse to understand the immense cost to me of socialising. A close friend disagreed with my explanation about why I turned down the invitation to a gathering of other friends who were once in my social circle. I only wanted to meet with one or two, but not the rest enmasse. There were a few concrete reasons, but summing up, it boiled down to the ultimate cost to me of making the effort to attend what may be to them a pleasant reunion for old times’ sake, but for me, a costly sensory and physical expenditure to spend time with people who have not made the slightest effort to stay in contact over many years. In fact, the celebrity of the day was someone I had only met recently, despite everyone else being very old friends with her. She took off to China and I have not heard a peep from her since around 2008, even though I have included her in my mailing list for my own updates. Well, some kind of cathartic life change brought her back to home base, and I happened to be visiting at the same time. According to the close friend, she requested to see me. I declined, and explained my reasons. I was, however, softly chided for my need to prioritise. It made me very sad. Not angry, just very very sad. That the one I considered a trusted and close friend was unwilling to see my perspective, and instead spouted sage words from out of neurotypical social-based systemic morality.
My email address has not changed. My old friends know where to find me if they wish to do so. Some have done so, while most others not. Yet, I am expected to pay the high price of sensory overload and physical pain just to pander to their erratic and occasional demands for nostalgic stirrings. To be very honest, if it cost any of them as much to spend even five minutes in my boring and uninspiring company, I am quite sure they would not be all that enthusiastic to meet with me, especially if I had made no effort towards keeping in touch for years. And I will understand. I will not need to moralise on the rights or wrongs or whatnots. Because I empathise. And they will not be any less in my valuation. I have not and will not forget the good times. Herein lies the saddest difference.
I am happy with myself that I am finally learning to prioritise according to my own sparse resources. But I am sad that people I hold dear do not wish to recognise this as a positive self-preserving act. Was it my fault that I had become too good at acting normal, too good at mitigating my own pain, too good at pushing myself beyond limits just to present a semblance of normality? Perhaps. It takes two hands to clap. And clapping is a very difficult and complex proprioceptive manoeuvre indeed.