deliciate

Deliciate: to delight oneself; to indulge (in feasting or other revels)

Old words fascinate me. And this one is a timely balm to a fractured, frayed and frazzled soul. (Yes, I also love alliteration. Part of my sensory ‘stimming’ – calming, even if just for the rhythmic enunciative physical qualities.)

This is one old word that I’m longing to luxuriate in.

Sometimes, the cosmos interferes vigorously, even sharply, for my own good, especially when I have been self-destructively obtuse, obstinate and obscurant – inwardly – denying what ought to be glaringly obvious, covering my ears to the roaring whispers of ratiocination. A knock on the head was needed to wake me from my self-induced somnambulism. This thunder-clap on my thick skull came from a remark made by an autistic man, expressing an utterly selfish viewpoint with foot-stomping petulance and digging in of the heels with so much defensiveness that it was almost bizarre. I was shocked and disappointed at first, but I realise now that, inside a deeper consciousness, I already and always knew this side of him. I had merely been blinded by my enthusiastic hope that the person would change, that I could make a difference in this person’s attitude and learning journey.

On another level, I am sad that he did not even discern that my advice to him would actually serve to advance his own (albeit selfish) cause even further if he took it on board. Sometimes, we need to do some things that seem a waste of time, in order to gain other things, which may be less immediately tangible. When I offered that piece of advice, I was referring to proper protocol and professionalism, not selflessness. But who knows what really goes on in people minds, autistic or not? It was my own error of judgement that led me to this feeling of shock and disappointment, and I own it honestly. The person did not change, and is unlikely to change. My very first, immediate and direct sensing of him was absolutely accurate after all – I just deluded myself into thinking otherwise. My bad entirely. And it is timely that I am forced to detach and back away. Any later and I’d be not only more burnt out from all the time, energy and resources spent on a thankless mission, but worse than that I’d be inextricably bound to someone whose ideology is vastly contrasting to mine. For example, it would be professional self-destruction to be seen by the world as endorsing a product I do not firmly believe in, and which has potential to go rogue.

Anyway… I am relieved and pleased now. What is of import to me is that this served to tear apart the heavy veil that I had been erstwhile enshrouded in, and allowed my soul to emerge into the light.

A process in the making, but it took a small, innocuous rending to break forth, but the details of which need to be unpacked in another musing, not this one. Right now, I just want to dwell on healing and restoration, which the last five days at the SYNC Leadership Programme has galvanised and propelled me towards.

What are the things that heal my soul? What are my cosmic and intimate priorities?

Cast aside the inutile to-ings and fro-ings that tear apart fragile refined tapestries – it is Time to indulge and revel in little appogiatura and melismatic undulations once more.

Simple things – little details and observations.

 

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Edible things – because I love food!

 

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Time-tested things – appreciating loyalty, trust and connectedness.

 

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Lucy Like-a-Charm and all things Lucy – my lifeline.

 

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what the spoon?

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Photo by Dawn-joy Leong. Please do not reuse without prior permission, thank you!

I’ve said many times I am a reluctant advocate. I wish there was no need for vigorous advocacy – because this would mean that society has progressed to a place where people (at least the majority) are not only aware of differences in embodiments, but actually actively embrace and practice the effort of empathic reciprocity across divides. Peace. That is. Empathic resonance inside a Clement Space of Peace.

Autism Advocacy is one of the fiercest, most contentious arenas in the disability field. I cannot think of any other disability that is so copiously mired in greed, personal ambition, powerful corporate agenda and human pride and prejudice. And I do not mean only the vested interests of the Neuronormative World. Autistic persons also take advantage of this platform to further their own ambitions. And why not? Since the arena is a free-for-all dominated thus far by non-autistics, why can’t Autistics now use their own platform to further their aspirations for whatever it is they yearn? Money? Fame? Employment? etc.

I’m the last person wanting to set a moral tone. My protest has always just been that of tiredness and utter disappointment in humanity – regardless of neurological identification.

The one thing I am learning from all of the churning, heaving and tumultuous goings-on is this: everyone – myself included – has an Agenda. But not many – neurotypical, neurodivergent or autistic – can truly understand when an agenda departs too far from their ‘norm’ – their sphere of thinking. Who’d believe that I have done all these rather radical things, exposed myself in such grandiose and sometimes even bizarre ways, pushed myself to the very edge of my perimeters, just for a naive and simple agenda?

Singapore.

People repeatedly ask me if I have gained higher professional standing, garnered more paid employment, and generally benefited in positive ways, as a result of my many public appearances on television, in the news, etc. My honest answer is no. All my professional achievements have been built upon the foundation that I had painstakingly laid years before I returned to Singapore. A decent portfolio of solid work. Relationships built upon straight forward decent hard work and trust, humility to learn from those who dared and bothered to teach me, and a lot of patience. Nothing to do with the superficial ‘stardom’ that people see. That – the media presence, the pomp and ceremony somewhat crass even – was all for the sake of Autism Advocacy, and if anything, I have suffered personal loss as a result.

Dealing with neurotypicals in the autism platform, I am met with suspicion and the usual jaundiced eye, not to mention patronising condescension and tokenism. My ‘unfiltered’ communication style has earned me a reputation – not necessarily a welcome style especially not at all in Asia. This is my so-called “social impairment”. Yes it is a serious impediment here. Don’t forget also the dodgy snake-oil peddlers and ‘cure’ brigade whose toes I have trodden on in my fight to inform and educate. On the other hand, while dealing with autistics, I have met with petulance, inflexibility and a puzzling determined absurdity, almost echoing of the stereotypes slathered upon us autistics by neurotypicals that I have been trying hard to debunk. Holding open heavy doors to learning opportunities, I am met with autistics grumbling about their $2 spoons, and various other permutations and combinations of such. Oh, and the competitive jealousy and envy too. From both sides of the Grand Neurological Divide. The catch phrase shared by all – neuronormative or autistic – when called out (and even when not called out, they actively and vehemently volunteer this snippet of wisdom):

“I’m only human.”

I despair. Too much – too often. What about my humanity? What about my spoons? I do not know what to feel or think, to be honest. All I do know is, more and more, I am driven back to hankering for my childhood dream. My Original Agenda, if you like.

When I was a child, at the teeny itty bitty age of six, I had already identified this sense of hapless hopelessness in my own reaction to the human species and human constructs. My dream at the time was to create a Utopia – just me and my animals, living in a cave deep inside nature, far from human intervention. Of course, that was ridiculously naive of me, and as soon as I became aware of the necessity (to me) of running water and flushing toilets, I abandoned that dream. (Yes, I even studied how to make my own toilet but it proved too daunting due to my hyper olfactory senses.) But the spirit of this yearning has stayed with me throughout my life, a longing for an impossible Clemency of Space.

Three years on since my return to my beloved homeland, I am truly happy that I did what I did, with the help of many key mentors and supporters within Singapore and overseas. And I am eternally grateful for the friends – loyal people and wise – whom I have undeservedly gained. But what I have been unwilling to admit – until now – is that the personal price was a heavy one. Apart from being variously mistaken for someone who is seeking attention and vain-glorying, or a militant ‘Autistic Threat’ out to take over the world, I realise that in my thankless quest for this nebulous “peace” agenda, I have neglected other things I hold much dearer to my heart. I have neglected good friends, and the one Being most precious to me – Lucy. And I have faltered in my own pleasurable and soul enhancing pursuits of art, music and research – my own Autistic Joy that nourishes me and builds me up from inside out. I guess my throwing all my Spoons on this advocacy mission, vision or whatever else one wishes to call it, has been my own downfall. This was my Grand Agenda for three years. An impractical one, I know. Impractical and impracticable it seems. But the dichotomy is this:  I am an artist, a musician and an academic at heart. So dreaming isn’t really something I can just will myself to stop doing. It is inexorable as the process – a life of its own. As for those damned Spoons, ah well, c’est ma vie. Win some and lose some – spoons will be spoons, humans will be humans, and I shall always prefer dogs.

Regardless. It is time for me to refocus on what really matters: ‘world peace’, ‘the greater good’, bridging the Neurological Divide, ‘Nothing About Us Without Us’, and all that stuff sounds amazing and lovely, even seriously valuable, but I must not forget that I owe a monumental cosmic debt to Lucy. And it is one that if I do not start trying to repay now, I will lose this Divine Opportunity for Grace forever. Lucy grows ever older as I run around lavishly spending our spoons helter-skelter – yes, you read correctly, these spoons belong to Lucy too and I am spending them on everything other than her. Humans are intrinsically selfish. Aren’t we? I am blessed to have such a patient teacher and mentor as Lucy Like-a-Charm. So, all the more, I must not betray her faith and trust in me. I owe to this unassuming, wordless creature my very life. Again, something very few humans are able to come close to grasping.

Onward Spoons then, Tally Ho! The Spoons are marching ever forward – but now with a Renewed Agenda, and rightfully so. Woof! Spoons for Love! Spoons for my Canine Angel. Yay to Spoons! Our spoons! To spend on Us!

Returning to Scheherazade’s Sea

Lucy Like-a-Charm

I cannot be all things to all humans – nor do I desire for such spiritual degradation. But to one exquisite Alternative Embodiment, I am indeed All and Everything. Wordless, faithful and steadfast, waiting patiently while I scuttled in hapless concentric circles; watching as I threw the precious pearls of our conjoined time into the miry bog of human pretensions; failing over and over again that dreadful Sally Anne Test, wearied, brow beaten, marginalised, yet stubbornly holding fast to clouds of lighted gas. Trust gained, so hard won, nothing but delusion, sliding down oozing greasy slope as rug is pulled from underneath with petty sleight of hand. What revelation – that ominous sinkhole never really was repaired after all, and blue dancing lights illuminate merely duplicitous display of pyrotechnic might.

Scheherazade Sea beckons once more – I can smell the delicate tremors of elemental empathy, it caresses so tenderly, drawing inexorably home into Clement Space, where I belong. It is time to cease from futile human meanderings, walk away from deceitful grotesque gyrations of do-gooding… and repay the debt of life I owe to Pulchritude, my Canine Angel, Lucy Like-a-Charm.

out of whack

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Fluffy

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.

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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!

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angel

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angel (June 2019)

Listening
Whirring fridge
A-flat
Human laughter in the wind
Slightly off C
Sudden dull thuds
Quickened heartbeat
A flash of white
Searing fear
Sirens scream
Inside the cavity
Of acid green
What is that smell?
Nebulous, acrid
Footsteps pounding
Headspace resounds
Broken B
Chairs dragged
Across cheap tile
Shattered F-sharp
Quivering interstice
And then amidst the chaos
Here in my bed
An angel’s breath
Comforts me

(9 June 2014)

(un)broken

broken pieces

This morning, my precious Octopus mug handle was broken by the cleaning lady. It was a gift from a dear friend, bought from a little shop in Covent Garden in London, and it’s traveled with me across many cities and different continents through its 30+ years of existence in my care. Intact. Today, I felt a part of me had fragmented together with the demise of this innocuous object. I can hear the neuronormative puffing and huffing, “Come on, it’s just a mug handle, get over it!”

Well, I am Autistic. I used to become intensely disturbed and distressed when someone so much as moved my pencils in my pencil holder. Neuronormative ‘expert’ observers of Autism label this “meaningless” or “obsessive” adherence to order, because we autistics are supposed to be craving some kind of malevolent “control” over our out-of-control environment.

The “out-of-control” part is accurate, but the “control” part is rubbish. What the normative ‘experts’ – professionals making good money out of us in the autism domain, and normative-minded parents spending a lot of money on non-autistic devised autism ‘interventions’ – do not know, and/or are not ready yet to want to know despite us autistics telling and telling them (though this is changing slowly) is that many hyper sensory Autistics like myself inhabit a realm that is far more exquisite than the noisome pestilence-filled domain called “normality”. We are connected to the vibrant matter around us in ways that normative minds may never be able to grasp, even some Autistics who’ve been so successfully brainwashed and ‘corrected’ by various behavioural mental programmes into becoming pseudo normatives, because they have sadly lost touch with this beautiful part of their embodied existence.

You see, this “just a mug handle” is part of the finely balanced, natural elemental ecology that I call my intimate abode. It’s not that kind of bizarre Svengali-like “control” that the normative minded pronounce us to have. Perhaps, because normativity can only understand this limited concept? Instead, it is a harmonious, gentle, generous, rich and grace-filled connection one small detail with another, molecule by molecule, whisper to whisper, heartbeat to heartbeat, that embraces us. If one component is out of place, or crushed by violent normative callousness, then the entire living ecology cries out in pain. Imagine, if your finger were crushed or cut off, will not the rest of your body scream and thrash? Why, then, are we Autistics punished for our intimate connections just because the normative have no such inkling of Being? (I’ve explained this in my PhD dissertation, under “elemental empathy” – please visit my official website if you want to read and learn more.)

“Get over it!” – sure, I shall, in time. But your finger… you know, that part of you?… if I break it, how soon will you “get over it”?

Executive function failure: I was unable to even insert money properly into my wallet after that incident. My heartbeat is going at a racing pace, the over-exerted organ pounding against my ribcage as if it is trying to escape. I am sitting next to Lucy, inhaling her comforting aura – which includes aroma, fragrance, physical and spiritual radiation – trying to calm down.

Today was supposed to be my rest day, I allocated time to do peaceful, restful, rejuvenating tasks that are for me, by me and help me to recover from having to comply and perform to the excruciating demands of neuronormativity in the last few weeks and months. I have to try and make the most of it now. With a part of me, and extension of my Being, violently shattered.

Wouldn’t you guard your fingers and toes if you’re working and living in an assaultive environment? That’s just what us Autistics are trying hard to do. Yet, you intervene with your behavioural therapies to force us into a catatonic state of numbness and disconnect with our most beautiful modalities. Dear Normative / Allistic people, please don’t punish us Autistics for your own lack of sensitivity and connectivity.

Who is empathy impaired now?

autistic joy

My Twitter friend Jon Adams coined the hashtag #AutisticJoy. It describes our intense passions and the sheer unadulterated joy that we find from their pursuit.

I have been thinking about, and perhaps even yearning deeply, mournfully longing for that little balcony Lucy and I had in Stewart Street, Paddington. The sunshine days when Lucy would lay on her fluffy rug, watching our little Paddo happenings go by, saying hello to friendly neighbours as they walk down the street, the coo-ing pigeons outside Old Bob’s house, and my tomato plants. I had tiny carrots, mini capsicums, sweet ginger, spring onions, basil, lemongrass, and mint – quite a feat for a complete gardening ignoramus.

How I miss that intimate pocket of pulchritude that we created together. It is an aching, sad and forlorn feeling, knowing that they will never return. Lucy grows old. Singapore is not happy for her. We need to find Autistic Joy and Clement Space once more…

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

prepotence

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Propped up by a broom.

A huge ‘hidden’ but acute disability of mine is something that many autistics share: executive dysfunction. Teetering at the edge of a cliff, there is that sensation of falling, and yet one is still on firm ground – if just only by a hare’s breath. The feeling of executive dysfunction, of running out of what they call ‘spoons’, being at the very thin and slippery border, that unstable, fine line between (a veneer of) absolute control and complete breakdown, is a queasy, heart-rupturing silent scream. Sometimes, the tasks can be the most rudimentary, things that people just do, as naturally as any spontaneous activity like brushing their teeth or picking their nose. For example, answering multiple WhatsApp messages one after another upon emerging from a three hour meeting, without mixing up the who, how, where, when details of doing and saying. Then again, most people do not have to do all this while trying to quell gurgling, seething, frothing nausea, sometimes even excruciating migraine headaches and sharp stabbing pain in the eyes and inner ear, all from sensory overload. For the autistic person with executive function challenges, dealing with ‘simple’ chores can often turn into a battle with large roaring monsters, and staying on top of things becomes a colossal full-body, underwater wrestling match with an invisible Leviathan. For me, this is especially overpowering if ‘things’ involve many different human beings who are interacting in ways that seem to my brain to be alien, diverse, fragmented and scattered. The more human interaction is in the pot, the more cruelly exacting the grand performance becomes. Making mistakes is an inevitable and frightening feature in this unmerry-go-round. The ringing of the phone or the pinging of message notifications have become Pavlov bells of agitation and vexation for me. I have a horrible white-hot searing fear of sending messages to the wrong people, or not remembering certain details when people ask questions outside the ‘compartments’ in my mind that I’ve created for them. A person messaging me directly, taking a conversation outside a group chat but asking me questions that (in my mind) belongs to the group chat, can quickly send my brainwaves into wriggling, jiggling, wildly gyrating spams. I panic – why I do not know because it is not logical to panic – and of course I end up replying with either some garbled nonsense, or wrong information, simply because my mind has short circuited.

Even the most ‘expert’ of non-autistic ‘experts in autism’ fail to notice the subtle nuances of executive dysfunction and mental-sensorial overload as it happens in real time. In fact, I have yet to meet a non-autistic ‘expert in autism’ who can actually ‘expertly’ communicate with the autistic me. It is usually I who have to make all the necessary overtures – performing the unnatural as naturally as possible – in order to get any meaningful communication across. And autistics are supposed to be the ones ‘impaired’ in social interaction and reciprocal empathy?

This is how my autistic executive dysfunction plays out. On the surface, nothing is noticed. Not yet. There I am, deep underwater in the miry depths, engaging in mortal combat with that Brobdingnagian of Executive Dysfunction, but people sauntering by throw nary a glance at the pond, and nobody sees the tiny desperate bubbles bursting silently as they make contact with the aerosphere. All is cleverly concealed, until my spent and bloated corpse makes its way upwards, causing a huge blister on the placid surface. Then comes the shock and even derision. The accusations too.

People can be ‘aware’ that autism means a difference in neurological function. People can even be ‘aware’ of the terms “sensory overload” or “executive dysfunction” etc. But people have little or no idea how to identify the actual unpacking of all their ‘awareness’ in real time, especially if the autistic person is labelled by the non-autistic world as “high functioning” (not rocket science to figure out why I detest functioning labels, is it?). All this Autism Awareness with its fanciful labels is therefore as useful to me – an actual autistic person – as Blahblahblahdittydoodada. And this, while mildly comical, is not at all funny.

I’ve said this before and I’ll say it again. I am autistic. I love what I love with intense, all-consuming passion. And I am great at doing what I am great at doing – even rather brilliant. But I find the simple activity of keeping track of WhatsApp messages so difficult that I have developed a phobia for the sound of a message notification.

Prepotence in uncomfortable co-existence with decrepitude.

reflets dans l’eau

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stille nacht

2018 was unexpectedly obstreperous and brutal. A vast, swirling, seething, somewhat inebriated ominous monstrosity ingurgitating every attempt at hopeful rejuvenation, each ounce of vim and vigour slowly inhaled into its impenetrable mucilaginous dark cavern, leaving limp, brittle skeletal remains crackling in the sizzling heat of unrepentant tyranny, unrecognisable construal of once fierce passionate and spirited determination.

Advocacy has extracted its ponderous price. What irony, for one who never set out to be an advocate anyway. It is too arduous and violent for gossamer wings, too loud for tender ears, too rough for quivering fingertips.

Yet, where there is life, there remains slithers of flickering hope. And my life is not yet over, albeit saved time and time again by a Canine Angel whose existence beside me surpasses all reason, all logical apologia.

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whispering hope

My minuscule whisper to the grand cosmic gyration for 2019? Time to reflect, rest, and retreat gracefully into Clement Space: art-making, embracing pulchritude, tasting each nuanced fluttering of time moving rhythmically through wordless interstices.