Noshment. Sustenance. Oil in my physical lamp. Goodness for my soul. And thankfulness in the spirit. The family – mum, baby sis, brother-in-law, furry boys, and helper Nula – had lunch at our usual favourite yesterday, but at a new location. It seems as if the neighbourhood malls are more crowded than the main shopping street in the city. I bring my mental clement space with me. It is a struggle, most definitely, but equilibrium is what I seek. Continue reading
I can do a whole lot of things, and superbly well too. But autistic executive dysfunction is a very real thing, and I need help with the simplest stuff, without which, I am unable to do all the marvellous things as marvellously as I can. Autistic persons need support, no matter ‘where on the spectrum’ we may seem to be. That is why functioning labels are harmful. Stop referring to us as ‘high’ or ‘low’ functioning, we are autistic, we are humans. Start trying to understand how you can support us to do the things we can do well, so that we can in turn help you do the things you cannot do well.
This article is gold. It describes my own struggle succinctly without fanciful embellishment.
Here, in this video, Sonia gives an excellent summary of what I am facing right now. Thank you. This is why I keep reiterating the need for support and concrete help, though the neurotypical world tends not to understand the import of need, because they see only the autist’s ability to function pretty remarkably in the normative realm, and hence the juxtaposed disabilities are not discernible to the normative way of perceiving and analysing information.
In short, the world does need all kinds of minds!
A long ramble. A not-well-written meandering babbling. But I am unable to execute beauteous sentences and coherent semantic tapestry. My mind is exploding, and here it is…
Sensory struggle. Anxiety overload. Overwhelmed by the mocking interplay and combined assault of the inexorable passage of time and mounting anxiety in a bizarre Call and Response (on perpetual da capo).
Then comes a flood of benevolence.
And I am engulfed in a deluge all over again – no, not anxiety this time, but a gentle humbling at the Hand of Grace.
The path of scholarship is never easy, and too many people struggle with crushing student debt. For me, it is an ongoing lesson in pespectival shifting and readjustment. My familial background eschews loans and looks down its nose at debt. When I won my PhD scholarship, I plunged into the real world of student debt. Ironic, but true. The scholarship stipend provided minimal living in the most expensive city in Australia. I scratched the bottom of the barrel and grasped for straws just to buy my passage, so as to take up the scholarship. Along the way, I needed help, a lot of help, which came from my one loving sister and her husband, and a few good friends. Each time I cried into the roaring void at a moment of panic and despair, Grace has answered in a soft still voice. Some old friends fell away, other friends I’ve known for ages stepped up and re-emerged, and I made new connections with people who have become trusted friends and loyal supporters. Trundling along in our rusty wheelbarrow.
Recently, my scholarship stipend ceased. My own college has stepped in to pay the tuition fees for this final semester, and for living expenses, a childhood friend in Singapore has generously extended a loan, as has another friend in the USA. And another friend has kindly offered a roof over our heads for the write-up months leading into submission.
My very pressing and present focus is on the upcoming exhibition, Sonata in Z 2015, marking the final part of a trilogy of experimental works in autism, parallel embodiment and alternative empathy.
As I hurtle through time and space, nearer and nearer to the setting up date, I grow more alarmed at the emptiness. I am one. And I have just one and a half months more to filling a space 10 metres by 3.5 metres, with a height of 2.8 metres, with all the luscious details and sensory engagement that I have in my mind. An impossible task. Yet, the show must go on. That has been the mantra of my life – perhaps of many an autist’s life, struggling through alien and inclement systems to forge some form of independence, hoping to make a tiny contribution to our worlds. But this time around, the show teeters on the mocking edge of the abyss of nothingness.
In this dismal setting, once more comes another wave. Of Grace. From Grace.
Last week, I received a surprise package from lovely friend and talented artist, Skye – beautiful hand crafted jewellery, a delicate necklace with horse-shoe pendant, a handbag, and a pack of trotters for Lucy.
Then on Saturday, my friend Rick came for our usual bruncheon session armed with gifts of sustenance. Water biscuits, Double Brie (no less!), fruit juice, and a tub of tiramisu!
Yesterday, lovely Rodrigo dropped by, bearing yet more wonderful presents, carried all the way across the world, from his travels in Europe and the UK.
Another precious bestowment, small but no less consequential – a CD of Tchaikovsky’s Symphony no. 4 – from my friend M, who lives in a beat up old van.
A phone call from Lucy’s beloved Godma, Rose, also brought a sliver of hope to the bleak horizon. She suggested that I ask a crafting group for help, to create the small little details for Sonata in Z. I am not sure what may come of it, but I am deeply grateful to Rose for her vigorous and rigorous care and endorsement of my work and my very embodiment. Hope is sustenance in itself.
Strangely enough, during our bruncheon prattle, Rick and I somehow meandered into this biblical quotation, from the book of Hebrews 11:1.
Now faith is the substance of things hoped for, the evidence of things not seen.
Just as I was agonising early last week over budgeting for food, questioning my needs and muddling through the finances, making lists and cancelling orders in a cyclical manic haplessness, worrying about Lucy’s nutrition and projecting onwards to some necessary medical procedures in the near future, screaming into the resonant silence and mumbling to myself and anyone else who was willing to listen to my drivel how I need an army of Smurfs to help me complete the little yet monumentally volumnous details required in my upcoming exhibition – and wondering how I would make it through this final passage to the finishing line of my Grand Quest!
Grace once more intervenes. Not with small morsels of charity, but with a Tsunami of gentle affection and regard. I am overwhelmed. But not crushed.
My exhibition, Sonata in Z 2015, is about creating clement space within which grace provides strength and enabling of Beingness, and wherein empathy propagates and emanates across all states of existence. The process is as important as the corporeal creation, and Grace forms the architectural foundation of all my work, as well as the fountain of Living Water.
I thank my friends and supporters for their channeling of this profound clemency. We are building Clement Spaces together – and across neurological cultures too! Welcome to Scheherazade’s Sea!
Visual Snippets of Grace…
I woke up this morning to a soft, silken velvet head on my belly, deep amber eyes watching me as I stirred. I reached to stroke and revel in the luxurious texture and a glorious multidimensional warmth soaked upwards, through my cold fingers and hands, inexorably inhabiting my entire being. Continue reading
Relief, clemency, gratitude. Continue reading
Help and support hanging on the door knob. No need for social interchange if unable to cope with it. This is a blessedness indeed.
I remember a few incidents when I was pursuing my M.Phil in music composition in Hong Kong. I was very unwell – an autoimmune response to what was most probably sensory and emotional overload and meltdown – high fever, excruciating mouth ulcers, crippling arthritis. A few friends came to the rescue. Continue reading
Everyone needs friends. Good friends are a crucial support system in times of need, and that includes whenever one needs to share a good laugh, great food, rant or ramble, and even intellectual argument (or dramatic narrative)!
I feel extremely blessed to have a number of very good friends, who help make my life so much easier, and the journey a great deal less bumpy. Continue reading
Moving house is stressful for anyone. For a middle-aged Aspie Bunny with hypersenses and a painful autoimmune condition, it is a nightmare of monumental proportions. In the two and a half years I have been in Sydney, I have moved five times to date. Each time, I felt aged by a few years just from the ordeal itself! Continue reading
Lucy was a very good girl today. We spent the morning at the health clinic, first with the doctor, then at the pathology lab where the kind and gentle technician drew copious amounts of blood for a battery of tests. We were treated with so much kindness, not condescension, which was marvelous. The pathology technician was uncertain about service dogs, he is probably Muslim, and not many South Asians are used to having dogs around, especially not large ones like Lucy. He was hesitant, but not unkind. Once the matter was explained to him, he was very accommodating, but I left Lucy outside at the manager’s desk anyway, because the room was small and cramped, Lucy is a big girl, and also to be considerate towards the technician’s sensitivities. I told him and the lady with him, that I would be ok without Lucy for a short while, and that was true. It didn’t take long, and it is important to me to establish good relations with people who are congenial and sympathetic as well as professional in their attitudes. The process was smooth and everyone in the clinic remarked how lovely Lucy was – she lay quietly by the desk, in classic Greyhound Sphinx position, and waited for me until I emerged from the room, not a whine at all. I am so proud of her, and grateful to have her.
My experience this morning has made me think about my parallel existence and how it affects others around me. Having a ‘disability,’ whether neurological or psychological (yes there is a difference), physical ‘handicap’ or a debilitating illness, or even merely a divergent learning style etc, is expensive. Yes, that is the reality of our existence. We need help and support from the rest of society, because we are living in a system based on a contrastive system and perception of ‘ability,’ and ours is a disparate ‘normality.’ Continue reading