no business like show business

I read this blog post by the amazing Rhi this morning. “Performing Pain” – about the autistic experience of pain, a subject many autistics are familiar with. Many of us live with ‘comorbids’ that carry a heavy price tag – pain – which are often mistaken for Autism itself but they are actually just leeches, parasitical hangers-on, sucking the life blood from us, nothing to do with autism at all.

There isn’t much more to add to this exquisitely painful beautiful piece of writing by Rhi, but just a few questions, suspended mid-air, nebulous, ominous, diaphanous, whirling and twirling, wheezing and teasing, with no beginning and no end.

What if the “I” here (in Rhi’s writing on pain) is always – constantly without reprieve or remission – in intense physical pain? What if the “I” still has to perform in the grand show, the “I” still has to plough through the thick stabbing fog of pain – daily, nary a minute’s respite – while performing the unnatural as naturally as possible? What if, ultimately, there is no Clement Space available into which to retreat and repair. What then? The screaming is reduced to a constant hum, almost silent, compressed, suppressed and repressed, it has no voice, no outward channel of expression, no ability to reach for human help apart from tiny interstices of raw, exposed impatience and irritation which are misunderstood anyway, and too hastily placed by non-autistic observers into the “challenging behaviour of autistic people” box? Is it any wonder that autistics prefer the company of animals, of elemental connections, instead of the un-empathic assaultive drudgery of inter-human interaction?

Scheherazade’s Sea (2010), Roaring Whispers (2013), Little Sweets (2014), and Sonata in Z (2015) were all tiny glimpses, pianissimo enunciations, mere drops in an ocean of tumultuous booming that is the state of living with pain. No, it’s not autism that fragments and crucifies the autistic soul, spirit and body. It is the ever too present (for many, not all) stranglehold of pain that slowly and surely wears us down. As if coping with normative constructs and harsh alienation isn’t battle enough. We don’t “live with autism” or “suffer from autism” – autism is simply our state of Beingness, a crucial encompassing part of us that lends the pulchritudinous ability to view and experience the world in all its elemental dynamic glory, visceral and intellectual at the same time. If anything, autism is the ultimate saviour, if anything can atone for the wretchedness of existence, crucified at the Cross of Normativity. It is Living with Pain that is excruciating. And ultimately destructive. Autistic or not. But for the autistic with heightened senses, pain propels the Being into extremes from which there seems little hope of escape.

Still… in the words of that Irving Berlin song that wrings (no spelling error here) and writhes in my headspace: “There’s no business like show business” – so, “Let’s go on with the show!”

Footnote: Here are the lyrics in case readers cannot access the youtube video. Apologies, but I haven’t the spoons left to punctuate. Maybe this might give the song that added punch of pain, sifting through a huge volume of words without punctuation. Enjoy the show!

There’s no business like show business Like no business I know Everything about it is appealing Everything that traffic will allow Nowhere could you get that happy feeling When you are stealing that extra bow There’s no people like show people They smile when they are low Yesterday they told you you would not go far That night you open and there you are Next day on your dressing room They’ve hung a star Let’s go, on with the show The costumes, the scenery, the make-up, the props The audience that lifts you when you’re down The headaches, the heartaches, the backaches, the flops The sheriff that escorts you out of town The opening when your heart beats like a drum The closing when the customers don’t come There’s no business like show business Like no business I know You get word before the show has started That your favorite uncle died at dawn Top of that, your pa and ma have parted You’re broken-hearted, but you go on There’s no people like show people They smile when they are low Even with a turkey that you know will fold You may be stranded out in the cold Still you wouldn’t change it for a sack of gold Let’s go on with the show Let’s go on with the show

awful spectacle

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I posted this in my Official Facebook Page on Friday. It was a reflex reaction to having viewed two terribly humiliating and degrading videos of a young autistic child having a meltdown, recorded and uploaded to one of the many Autism Parenting Support groups in Facebook, by one of the many self-styled Autism Mom Guru types. Continue reading

empathy overload

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I read this article about dogs and expressions of empathy, and my thoughts immediately linked to the empathy overload that many autistics report experiencing – feeling so much of the other person’s pain that one is frozen or implodes and unable to react in a way that displays gestures of comforting or soothing to the other person in distress. This gives rise to the misunderstanding by normative brains as the autistic person lacking empathy. (No outward display of huggy-kissy-aw-you-poor-baby stuff that non-autistics seem to expect and perceive as having empathy.)

This passage jumped out at me:

“During the task, the researchers measured the dogs’ stress levels. Sanford said dogs who were able to push through the door to “rescue” their owners showed less stress, meaning they were upset by the crying, but not too upset to take action. As for the dogs who didn’t push open the door, it wasn’t because they didn’t care — it seemed they cared too much. Those dogs showed the most stress and were too troubled by the crying to do anything, Sanford said.”

‘Taking on the mantle of pain’ so to speak. Lucy seems to do this when I have had meltdowns – she freezes and just stares at me – and somehow, because of this, I manage to self-soothe enough to get out of my meltdown state. I am brought back into the moment by her presence and driven by my empathy for her empathy to resolve my pain reaction, simply because I do not want to see her suffer from my suffering. Does that make sense? Dogs can teach us so much about our humanity.

the dilemma of trauma

 

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One week of excruciating physical pain. Stress reaction. A serious one. I was caught by surprise this time, I didn’t expect my body to react so viciously.

I was physically assaulted last Sunday. By someone I know. The person has admitted to me it was a psychotic episode. I am psychologically and emotionally intact, but my physical body has reacted fiercely from the traumatic shock.

Last Sunday, I attended a theatre performance. I was standing outside the theatre, in a basement lobby teeming with chattering voices bouncing off pristine white walls, waiting for the show to begin, when a pre-show drama literally exploded in my face. Continue reading

dissociation

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dissociation
dɪˌsəʊʃɪˈeɪʃ(ə)n,dɪˌsəʊsɪˈeɪʃ(ə)n
noun
  1. the action of disconnecting or separating or the state of being disconnected.

Shared stories from neurodivergent people differ in hue, colour, strokes and intricate detail about their experiences of the state of mind-body disconnect that is “dissociation”. But all bear one similarity – that it happens because of pain, too much pain for the mind to bear, like a meltdown from sensory overload, though in this case the sense is excruciating pain, pure and unfiltered.

I wrote this Ode to Dissociation for all those who know it and are living it, the brave who have no choice but to be. This is not about death, really, it is about living in unending hell. That is what people who experience dissociation tell me. I think they must be right.

Dissociate

Depart from me, tender soul, your presence is not wanted. Inside tumultuous raging sea, this vulnerability attracts destruction, and annihilation becomes an inevitability.

Leave this terrifying arena, you have not the grit and boldness for the gory fight, you are but a diaphanous delicate entity, and the pounding hoofs of bulls are crushing you beneath.

Empty the soul, stand outside, dissociate from the incessant kicking of steel-capped boots, turn away if you can, do not watch, as this shell becomes limp and wearied, as it withers away.

Depart from me, tender soul, your presence is a burden that hastens annihilation. In death, we shall yet remain alive. This is an ancient trick, a grand sorcery of the mind, for survival of the fittest!

drain

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Drain. The physical object. That little channel ushering its contents into the nether regions of our consciousness. The act of it. That actual movement, going, flowing, evacuating, emptying. And being drained. Emptied, while still alive, until there is no more. At which point does it translate into actuality? How long can the human soul endure? Continue reading

clement space in the city

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I spent the last few nights and days in this sofa, positioned right next to the loo. For safety, because I nearly fell down the winding stairs connecting to the loft bed. And for convenience, in case I had to throw up. A good thing I am short, but still, I have not laid down properly in a bed, stretched out, for this entire time. Continue reading

amplified senses

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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.

accommodating Self

 

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.”

Continue reading