I have just spent two full days in a hothouse setting trying to learn a skill that I feel quite hopelessly incapable of mastering because some key elements require a high level of social agility which my autistic embodiment just cannot muster, try as I might. Sitting in my chair and trying to look engaged with the subject matter while weaving in and out of lucidity was about all I could achieve. My brain felt broken while my body was hollering unhappy slogans. It’s the kind of scenario where people who don’t know me well would look at me, incredulous, and say, “But you have a PhD, how can you not understand such simple concepts?” Um… well… You see, it’s not the concepts that I don’t grasp, it’s the ‘knowing-feeling’ that I cannot execute or bring to life these fundamentals that cause my brain to short-circuit, and thus my Being rejects the entirety while in the process of imploding. Continue reading
After three full-on gruelling days, APAC19 (Asia Pacific Autism Conference 2019) is over. It was an amazing and even sometimes exhilarating event – a first of its kind in Singapore where actual autistic people permeated all but the very top mesosphere at an autism event. 1,800 people gathered in the massive Resorts World Convention Centre all with the common goal of learning more about Autism and how autistic persons and those around us can best thrive.
I wrote a mini summary here, and uploaded some of my own photos, so go check it out.
Now to face the aftermath of all that dizzy positivity: my sensory system has been thrown completely off kilter, of course. Which autistic person doesn’t understand what I mean? Not one, I’d wager, though the specifics may be different for each individual.
For me, I’ve developed an insatiable appetite – it’s my mouth, my tastebuds and olfactory nerves all going chomp-chomp-chomp without care for or connection with the rest of my body. The brain is craving sensory comfort so much that it doesn’t want to acknowledge the other sensations like, well, a too-full stomach. I’m having trouble with my own physical signalling, as if I shall float away if I didn’t firmly anchor myself somewhere and somehow.
Oh, and the insomnia is deafening. I can hear everything whirring in randomly orchestrated high-pitched pretentious screech-fest in my headspace. Tones and microtones meandering, crossing, greeting, clashing, intertwining and looping.
And those bizarre lights at the convention centre, they’re gyrating and creating a bit of drama. My eyes have not stopped hurting since – I can feeling the muscles tensely squeezing around the eye socket – and my vision is blurry.
I need Clement Space. In bed now, listening to Lucy’s breath, softly undulating, her warmth emanating so reassuringly.
I must attempt to sleep now. Good night, Every Bunny!
Human laughter in the wind
Slightly off C
Sudden dull thuds
A flash of white
Inside the cavity
Of acid green
What is that smell?
Across cheap tile
And then amidst the chaos
Here in my bed
An angel’s breath
(9 June 2014)
A massively overloading day. I made it through the first part because of Lucy. We attended the second Opening of I-Opener at Playeum this morning. It was heartening to see so many people at the event, and I was so glad that everyone seemed enthusiastic and supportive, and our work as a whole was very well received – but my senses were screaming with silent horror after the first half hour, and the shrieking crescendo broke the fortissimo barrier by the second hour.
When Peter, our friendly RydePet regular favourite ride came to pick us up at the end of the two hours, I was already in a near catatonic state, my headspace ringing with the imprint of dissonant cacophony. Strangely enough, I was still able to prattle away in the car with Peter and my friend Jacky, who was riding with us to the next event of the day. Was I already going into a state of disconnect?
I left Lucy at home, and Jacky and I went to attend the Peter and the Wolf show. Two of our friends, Cavan and Timothy, were in it, and Timothy’s mum so very kindly bought us tickets. But I couldn’t bring Lucy to this one. Ironic, because the venue is assistance dog friendly – Lucy has been there several times – but the show’s organiser’s “were not prepared” for us.
It was a fun show, the cast were great, and I even managed to smile for the cameraman after the show (he took a photo of Cavan, Timothy and me). But I had to scuttle away quickly after that, because my head felt as if it would explode and shatter into a million fragments.
Home at last with my Lucy, I crashed into a much needed two hour sleep, and woke up only when Lucy decided it was time for her dinner.
The headache is still doing its pounding thing, the two panadol insufficient to quell it. Time for an early dive into bed.
For people like me, some days, just making it through is a laudable achievement, something to be proud of. And today was a pleasant day. Really. I love my friends, so many came in a much appreciated show of support – in fact, I was so overloaded that I didn’t even see one of my friends, who brought her husband and son to the Opening. I didn’t know she was there at all, the sea of faces had melted into a bizarre Salvadore Dali landscape with an aggressive soundscape to accompany. Later, without Lucy, it was even harder to focus and I had to consciously and repeatedly pull myself away from the abyss of dissociation – the out of body sensation that overtakes when I am in overload. It was a day of positive social interactional vibes, but my senses just aren’t designed for this kind of activity. Especially not when I cannot have Lucy with me.
Lucy is now fast asleep in bed next to me. The little fragments of my Being are slowly shifting, shuffling and scuttling back towards each other, slowly joining and melding, slowly mending, inside this Clement Space of ours – just Lucy and me. The best soundscape in the world for shattered nerves? The rhythmic rise and fall of my Angel’s breath.
Good night, Every Bunny! And thank you my dear friends for helping me get through an actually really truly lovely day.
I love food. I love the aromas, textures, tastes, colours and visual compositions, not just the way food is presented, but the actual patterns and formations. Wrinkly crinkly chicken skin, taught and shiny tomato skin, curly edges of lettuce leaves, or scattered sesame seeds, food is endlessly fascinating to me in a multi sensory way.
Lately, I’ve been particularly enjoying the tiny details in everything I eat. Apart from spending time with my beloved Lucy, food, and all it encompasses – the sensory fullness and the activity – is an excellent relief for stress and anxiety. My nifty little Fujifilm X100T (gifted to me by a very good friend) is fabulous for street photography, and not really the camera for portraits or close-ups of little things, but it’s a challenge that I welcome – with some hits and misses, and a great deal of satisfaction and fun.
Lucy seemed restless this morning. She was lying in bed, watching me work at my desk, and suddenly did a little bounce and let out a mini yelp in my direction. I turned to look at her and she held my gaze, nodding her head, bounced again and made that same yelping sound. Lucy does that when she wants to communicate – she doesn’t bark at all in any other ‘normal doggy’ circumstances. When I first heard her bark, it was two months after she came to live with me, and out of the blue, one afternoon, she did that bounce + yelp thing, asking me to play with her. I’ve learned to recognise that. Continue reading
against tingling palate
start, stop, start again
pushing rusty wheelbarrow
along bumpy path
left, right, across
just to see
it’s all good
Work in progress…
It’s been more than a week battling this cold and cough. My voice is all but gone. I sound like a constipated frog (do frogs really constipate?). Been through the dramatic works, the wailing, flailing, fainting and vomiting stuff etc, and now finally on the mend. Still coughing alarmingly – feels like the guts are all going to spurt out at some point or other – and noticing some pretty aghast looks being thrown my way, through the tears in my eyes while attempting to blow my nose. Too much multitasking, being sick is unpleasant for anyone, but being sick with hypersensitivity cranks up the ‘horrid’ volume manifold levels … and over and over. I am missing my Lucy. A lot. Clement Space was inspired by Lucy.
Nevertheless… I have been building clement space… in little ways, struggling valiantly, and in the more ‘official’ manifestation, of course, the exhibition. The show must go on, and so it shall! Continue reading
What happens when an autistic person with hyper senses becomes unwell / sick? Do those hyper sensory antennae suddenly shrink to ‘normal’? Nope. They are amplified still, as ever, if not even more so. The pain is compounded, and searing terror all the more gripping.
Staring into my delicious bowl of hot potato and leek soup this morning at the Arthouse Kitchen, after an entire night spent retching into the loo, I felt a sense of relief – just simply because I was no longer trapped inside the swirling sphere of excruciating agony. Last night, it was as if time had snapped its back and was lying on the ground in a crumpled heap, sneering at me each time I convulsed, perspiring profusely like a tap at full blast. Not a pretty sight. Not one I’m happy to allow any to witness, so another episode came and went, with only the cosmos as voyeur, and my paltry words to record. I don’t want or need anyone to hold my hand during the ordeal, no thank you, it adds to the distress, really. Yet, being all alone in the cold, stark artist’s studio while teetering on the brink of physical and mental breakdown, was admittedly most frightening.
I couldn’t swallow more than 6 spoons of the goop, no matter how tasty. The throat is inflamed from all the coughing and sputtering. Sorry, Massimo. Please don’t take it as an insult to your culinary offering.
It was a comfort to sit in an old favourite and familiar space. Though with a sad twitching tingling feeling, because that was one of ‘our’ places to be – Lucy and me.
Takeaway: Autistic hyper senses = amplified horror and pain when unwell. Spare a thought for us, we’re not being dramatic. In fact, we prefer to hide inside our excruciating terror. But being nearby and knowing that you are somewhere does help a bit, if only to call an ambulance if needed.
Yesterday afternoon, a friend took me to a little nooky cafe, tucked inside an industrial estate. A former hardware shop, the entrance decorated with eclectic vintage clutter served as a thematic introduction to the atmosphere within. As soon as we pushed open the creaky door, I felt a draft of musty, humid, cool air blow directly into my face, then wrap around me like a nebulous mouldy snake. My skin tingled, as my olfactory senses picked up the various miasmic odours emanating from each visually charming piece of history on display.
The waiter ushered us towards the back. Slipping within a split second into a bubble of wordlessness, I followed obediently, semi-somnambulant, my sensory system already engaged in a (routine) contrapuntal wrestling match with the onslaught of smells, sights, and sounds. As we were about to sit down at the allocated table, speech suddenly returned, and words fell out of my mouth like marbles, tumbling down and bouncing sharply against the concrete floor.
“I don’t want to sit here, it smells funny. I don’t like the smell here.”