But what does it gain me to lash out when the anxiety, the sickening suffocating loneliness and the sheer impossible manner in which I am expected to keep on surviving, let alone living or even thriving reaches boiling point?
I just end up alienating a few more people who were once upon a time quite well-disposed towards me.
And it’s not like any of my friends and family, near or far had a hand in the losing streak my deck of cards seems so often to produce. I should probably wear a health warning of some kind as well as a strict expiry date ..
Email to my truly outstanding and dedicated NDIS Support Coordinator:
Hi R.
Can you please tell me what is happening tomorrow in terms of rosters and carer S.2 et cetera?
Am back home resting and have made my apologies to James the physio who just came round when Ambo Dave and yet another bunch of amazingly helpful neighbours had escorted me back down the drive.
I do feel for you, having me as a client ..
I got spooked when i woke up and carer S.1 had gone.
Checked my email (phone still not working) and nothing from you or J. in Rosters, then sort of panicked and went to see if i could get a massage, fix my bloody phone, get some decent shorts … or just something to find relief or a even just a bit of a break from the current unbearable pressure .. something, somewhere, someone..
Got caught out when i couldn’t get water fast enough, so barely made it past local caf Sal & Co. Don’t think the lovely staff saw me in dire straits this time, although to be perfectly frank, at this stage what does it matter? Not a jot, not one iota.
Then tried a quick dash up the slope to the divine Wamberal beach thinking i might yet salvage something from this escapade that was fast starting to look a bit ropey.
Thought ‘If only i could shed some of these insanely cumbersome and restrictive clothes and walk back along the beach.. stupid bloody tracksuit bottoms!’
Amazingly fit and strong older surf bloke Michael (dead ringer for Spike Milligan) and really nice bloke Craig carried/helped me down the slope – me at this stage, of course again very much sadder and wiser, with better safe than sorry of course being my newfangled mundane mantra.
Ambo Dave joined the gang – “Ah yes, i know Richard … how are you buddy??” – when Michael put me in his car and drove me home where they both frogmarched me gently back down the drive to the Wolf’s Lair.
My God what an amazing place to live..
On the plus side, Ambo Dave was satisfied, even impressed in the end, meaning i think i narrowly avoided yet another trip to hospital LOL.
That reminds me, dear R. I received a $500 bill the other day for my last ambulance ride, probably with Dave ..
THE RICHARD OF OZ WILL CEASE PUBLICATION AS OF 20 OCT. 2020
A New Broom to Sweep the Gloom and Dusty Doom Away..
I used to think my greatest danger in how to introduce myself to potential new friends et cetera was connected in some hazardous way to the all but inevitable common human trait of making rash assumptions, based on how one operates one’s self in any given scenario.
I think an even bigger threat to the likes of an awkward stubborn bastard like Muggins is the now fast-disappearing crucial sensibility that enables one to join another’s imagination, if only for a while.
.. the skill of reading between the lines and of understanding, with the heart as much as the noggin, symbols and omens.
How to read the language of Life itself, a construct vastly more poetic and eloquent than any practical, literally-phrased bullet point manual to any man-made device, however useful or desirable, could ever hope to be..
New horizons … one way or the other. Quite exciting ,, thank you to all who have grown ‘accustomed’ to ROZ the mag, as well as ROZ the man. The future beckons!
Had a wonderful sleep on Friday night after deciding not to publish my somewhat panic-stricken reply to my solicitor concerning my last chance opportunity to secure my private disability insurance payout and instead opted to simply trust that some new people in my life such as my NDIS support coordinator – already apart from anything else a rare calming influence on me – are fully aware of what I am now up against.
And I have been hanging on by a thread as she is steadfast and reliably clearing the rubble left in my meandering path by the astounding mismanagement of her predecessor.
I can see she is now actually putting in place solid lasting provisions, which once they all fall into place and join up properly, will see me in good stead for years to come. Of course, this takes time.
The NDIS is a very ambitious social scheme, and while there is every chance that in theory I might be able to have a lovely few more years residing in my home – this lovely place where i feel safe, happy and free – provided those ongoing services are in place, I am of course starting to see the usual writing on the wall.. #tellmesomethingidontknowalerert
Still, it proved to be a great day for several reasons, but let’s see if i can indeed at long last stop trying to explain the bleedin’ obvious and just recount my pleasant day, which included Muggins catching the bus into Terrigal for the first time in months.
I was up and sweeping the yard as one my new carers came down the drive, about to start a two hour shift, and because I’d slept well my speech was not that bad so was even able to enjoy a nice chat.
Later that morning, with a dazzling and ever-growing army of concerns and worries attacking my precarious equilibrium, I decided to try and fool part of my brain [it’s a PD thing] and simply pretend for the rest of the day I really didn’t have much more to worry about than just keeping track of my two-hourly meds routine.
Had a stroll around the shops, sat amid the normals but as my stress levels were still playing ball, my speech was adequate so i was able to minimise the Quasimodo factor significantly.
It was too breezy for a swim but by late arvo I was still feeling chipper, confident and strong enough to choose to walk home via the consecutive beaches of Terrigal and Wamberal, arriving back home a bit later feeling chuffed and groovy.
Well yes, obviously by recommending you consider supporting The Richard of Oz ….
The reason for my impetus to turn ROZ and any other potential off-shoots into something a bit more credible looking is because in many ways this strange timeframe seems, to me at any rate, to reflect the turning of a most momentous wheel and in parts, it feels very eerie and odd.
My forte and my Nemesis – communication.
I never could stand discord, the sheer awkward disharmony of it, and I feel sad at how the last few months have descended into an atmosphere – all too public at that – where my anger, frustration and ice-cold despair and isolation revealed a hopeless, anxious side of me I cannot presume to gloss over in any glib way.
Still, some other very strange things beyond my own scope took place as well.
However, for the final time I am choosing to share a document, an email in fact – simply to have it noted, recorded somewhere by someone other than Muggins, whose miraculously mercurial mind is not entirely what it used to be..
And as before with a great many other frantically documented administrative swings and roundabouts, those with whom I have shared my response to the solicitor’s offer of one final push to secure my private insurance claim for TDP, are not required or expected to do anything other than take note of it.
Increasingly, I am finding speaking – let alone explaining – to be too heartbreaking. It feels in yet another way like another full circle event, all witnessed in abject silence by the same person who not that long ago tried to pick up a few extra pennies using his cherished ancient Audi to assist Uber Eats in providing delicate breakfast bowls to the temporarily house bound inebriated cream of the Gen Y crop in Double Bay, Vaucluse, Mosman..
. . the same silent inner observer who found himself only yesterday marking off another gloomy unwanted signpost on this bumpy downward track – accepting a kind OT’s suggestion of introducing a wheelchair to the long and varied list of vehicles I have known.
But you know what? I think I might just keep it on file for now. Who needs histrionics when a lazy comfy evening can be had?
… take for instance my trusted intrepid transcriptionist extraordinaire who virtually came along with me all around the world during my Telecom Times days, what a trooper!
I think K. was the most sad to hear of my having to hang up my telco journo hat when Bloody Mr Parkinson’s nagging just became too intrusive and disruptive to ignore ..
BTW, I have just recently had cause to unfriend, block, parry, duck and weave a number of people I had always believed to be in my corner no matter what ..
I don’t think any progress has been made within that little hornets’ nest but I just don’t do discord. Water under the Bridge?
I feel there is yet so much yet to do on the website before this week s kicks off but i was once again bowled over by an uncannily precise radar on the part of my lovely upstairs neighbours who always seem to find their way to my front door when i am feeling at a low ebb.
The better half of one of my neighbours hails from the land of the rising maple sirup, and so it was that Muggins got to enjoy a Sunday roast again, it being Canadian Independence Day*
THANK YOU!!
* Must double check with my neighbour at some point but my guess is that the answer to the question how can they rip it up all Independent-like and still profess fealty 2 the House of Windsor, has 2 do with the nation being a dominion rather than a colony
Or something connected with the French background. The point is it was a lovely gesture at the right time.
First things first, what shade of true blue azure bliss will this brand new morning sky reveal to us?
Also on my mind that most unsettling recent trend of friends transforming into mates that could have been.
The natural communicator in me has of course repeatedly pressed the Internal Paranoia Department on whether Muggins might have imagined certain nuances, aspects or inferences perceived in some of those sad interchanges…
But second things presently, also have to put my skates on and apply the finishing touches to a crucial email to the property manager first, or second .. or?
And I still have to find that Donations Please GIF or Meme.. pheww!
Such a nice day with one of the new carers starting.
Loved how she turned the place into a thoroughly comfortable ‘home’ in the wink of a no-nonsense eye..
Even on bad speech days (haven’t managed to skip one yet, when my anxiety and stress leave me prone to a dazzling array of potential dangerous misgivings or even just the plain old garden variety misunderstanding ..
.. I know a rapport of some sort has been established the moment an Aussie lady calls me “Darl“
And to the equally kind and sanguine lady who just left i remarked how it was only today and yesterday during their individual stints that either my exhausted frame or my slightly fragmented mind actually was able to unwind enough to remember and then feel the bountiful repose of sleeping or even dozing off for a moment fully certain nought is gonna befall you.
Not on their watch.
BTW, I do need to get a new cheap watch from BigW again as i found it most useful for keeping on the straight and narrow Stallevo-wise.
After the kind of day I had, and you simply wouldn’t believe it, I may not get a chance to elaborate on a great feeling of inner calm.
But much as I am still reeling from the shocking manner in which some (former) friends comported themselves recently I will be damned if i let this fine day of the Lord pass by without having had a dip in our cool Pacific.
Catch ya later, or not as the case may be..
For my part, I found it quite reasonable on balance to insist on having a deciding vote in how, and where the next † phase of mi vida loca might happenstance..
Relocating might well be a sensible course of action , it had been for a while, but that doesn’t mean i should be shunted along fresh out of hospital without at least some time to talk things over or to get an idea or some understanding of some scenarios I may indeed be obliged to consider at the ripe old age of 55.
The thought of yet another soulless move to anywhere really doesn’t make me giddy with anticipation
Perhaps some of my tired friends ansansaaaabelieved I had fought such a long battle where the prize would consist in waving goodbye to life and liberty and embracing the regulated thrills of set mealtimes, bedpans at brekky?
If you remember, following my fall from grace I never even intended setting up home ever again ,,..
Granted, I do love this haven by the ocean. Also don’t forget a home is more than bricks and mortar. Since i am still bereft of NDIS carer arrention, i have become even more of local a attraction. Yesterday, like the same three days before, i got so tired just doing some groceries on foot plus trusted backpack, i ended up quite literally not being able to walk at all.
I would ideally have a friend or carer qr anyone sympathetic really accompany me to the beach when i am feeling not quite my LDopa powered self.
However, losers can’t be choosers so the local weekend beach crowd saw me making my way back to my unit having to use two sticks simultaneously.
(I know right : very sexy indeed ..)
For now, i am choosing to attribute these incidents to the intense and seemingly never-ending stress.
Also happens to be the second day of sleeping like a civilian, as well as day 2 of being able to go for my sunrise stroll to the beach upbeat and physically strong and confident enough to venture out the door leaving my cane behind – and rocking up at Cafe Sal & Co yesterday and Cafe Malibu today, as chipper and bright as some kind of especially chipper and bright thing – fluidly breezing in just like a normal and managing to place my order free of stress, smiling and – Thank you Lord! – for once without having to note those straining furrowed brows (‘What on earth is he saying?’) ..
Also the second consecutive day without a carer/DSW as two separate members of Team SaveRicho were indisposed – in turn of course raising my old paranoiac alarm bells with a sense of gloom and foreboding following suit.
After all, I know I am no walk in the park and – at best – a bit of an acquired taste.. Still, let’s not give in to that kind of lazy defeatism.
Early this morning, at the beach all was right with the world, on my way through Shoe Rugby Park I saw my brace of Massive Magpies, my very own trusted Corvidian bodyguards.
And, yesterday I crossed the threshold of Cafe Malibu only to hear this quite obscure ditty welcoming me on the sound system:
My totemic anthem I clung onto so tightly last year as Mister Bloody Parkinson’s saw fit to end my travelling telco days, forcing me to bring forward my tentative plans for a shaky sea change ..
That strangely mesmeric tune I still have on my phone, ready to play loudly on my headphones when the going gets tough.
What a very strange life. Horrible, awful and downright sickening a lot of the times, but not tedious .. no never dull or drab.
Woke up at 6am – a huge lie-in – and got ready for the week ahead and new meds routine attempt no. 7 or 8, which involves adding Stalevo to the Kinson-centred mix.
After asking for some advice on this med from PD experts (i.e. PD sufferers only) as part of my outstanding specialist’s description of it reminded me of the dreaded Madopar, of course who else but the Intrepid Miss M. obliged within minutes offering some invaluable advice from the trenches re Stalevo.
Thanks so much! Hang in there and don’t forget to raise Hell whenever you need to, quite simply because I was a fan of the way you managed to carry it off. When I’m pushed towards that dark end of the Angelic spectrum, there’s usually not that much more to enjoy about the experience an sich for anyone unlucky enough to find themselves caught within my radius ..
And it’s good to see Google’s AI monkeys finally have sussed me out. Until recently, their initial assumption seemed to sum me up as ‘some kind of devout womanising telco fanatic’.
Nice to know some kind of msg got through in the end. Although the plan was to rally some interest, support etc. to allow me to grab a last ditch raison d’etre before slipping into Disabled ‘I could have been a contender’ country and to actually save me from my own restless mind/Pandora’s Box of Tricks by doing something worthwhile and meaningful for others in a way that made so much sense to me.
Using whatever it was I could draw from to build a platform or organisation dedicated to promoting and highlighting this kind of story:
But I can still do that as long as I have access to my Chromebook and my robust Google Pixel 2 (am still paying off my Pixel 3, which of course I never should’ve bought as it clearly was the one to skip, and promptly lost somewhere around Middle Head Rd.) – and provided the drooling and/or colostomy bag don’t get in the way of the keyboard too much going forward ..
And yet where there’s life, there’s hope. The other day the Stealth Publications office was inundated with an email, happily informing us of our second Twitter follower.
Thanks John ..
And it’s all bloody relative anyway.
Each and every one of us could well say of everyone else, every single day: ‘There but for the Grace of God…’
As our lives meander this way and that, up hill and down dale, those of us blessed and cursed with an additional measure of sensitivity, invariably sense who are the people crossing our path for a reason beyond the mundane ..
While stuck at home laid low by my seemingly immovable lodger, that Bloody Mr Parkinson’s who just turned up one day in December 2016, I find confinement does offer some welcome time for reflection … up to a point.
The tricky common denominator in any attempt to smooth the waters for Muggins is not strictly related to (YO) PD pur sang. It’s as though the PD grabbed hold of something deep within that was – let’s say – less than placid and far from easily placated for starters.
And yet, rather a challenging life than a life no longer considered worth challenging. That’s a bold statement though and many times during a day this type of easy meme-worthy sloganeering is distasteful to me. Particularly, when the Churchillian Black Hounds of Despair drive up my Vulpine heart rate to near-unbearable levels of dreary anxiety.
And while the depression and anxiety are horrible companions to anyone’s life, no matter one’s own circumstances or social network, financial status and what-not, my own worry in regards to my inner balance hinges more on my infatuation with that mercurial yearning to reach for the stars and hang out on a waxing or waning Diana’s Hunting Moonbeam shooting the breeze, before just quickly dropping in on that remarkable little statue in Kensington Park, and finally perchance respectfully seeking a convo with some of the Thrones, Seraphim or Cherubim on duty if and when the mood takes me.
But let’s count our blessings rather than our losses or the things, friends, experiences, loves, kisses, near-loves, near-kisses, never-loves etc. and just try to find something left in the fragile vault worth cherishing, polishing up until such time, Deo Volente, that it may actually be of use to someone else out there in the Big Bad (wonderfully alluring) World ..
So much to worry about for my friends and loved-ones near and dear. Bad tidings from Alan Joyce HQ, a major worry for myself, and friends and family. And banding together somehow feels like it won’t be as seamlessly second-nature for my fellow Aussies during the next rollout of the CoRvid thing. I could be wrong there but I sense our crucial culture of mateship fraying a tad at the edges..
But let’s hope I am wrong.. it has been known to happen once every few centuries..
Dreading the empty nonsense soon to hit the airwaves with the elections in another country somewhere, but finding some solace in having had some exposure to the inner workings of news, journalism, comms, politics, PR.
As a lover of language, words, idiom, communication of literally any kind, I relish having the time every now and then to retrace my steps leading back to some earlier incarnations during which, for whatever reason, I never quite got around to looking further into some promising – possibly soothing or merely entertaining – avenues.
“How much for the insult?” – “You’re as funny as a cry for help..”
Looking forward to a much more serene and soothing week ahead (here’s hoping). What a strange life, and what odd times we’re all grappling with … Look after yourselves, your loved-ones and those shadowy figures you may be only half aware of but who also seem to be living and/or surviving in your area ..
That kind spinster (is that still a thing?) who always comes into your shop two or three times a day and sometimes appears just a bit too cheerful for her own good, that doddery old bloke on the corner who seems to have modelled himself on Sandy Stone (next to The Dame my fave Barry Humphries character), the proud yet tentative new immigrant family touching down .. you get the idea.
How poignant to hear Clive reflect on Barry’s mortality. Clive James who himself sadly passed away in the UK not that long ago, without having had the chance to return to the city he never stopped loving.
Plus sort of confirmation in the US tabloids overnight of what I knew instinctively for a while already. That Robin Williams, indeed, suffered from PD/lewy bodies dementia and how his last few years were simply horrific. Still, how could a mind that shines that brightly not attract some envious dark assailants of the spiritual kind.
So, this is it, there’s no dress rehearsal.
This broken, fallen world which could’ve and would’ve been so different if .. And yet, there is a happy ending too if only one is prepared to see what’s in plain view and has been for yonks.
In the meantime, much as I am wont to flex my polemical broadside, all this tiresome insipid kneejerk tribalism on display almost everywhere you look – yes, like war – what is it good for?
We’re it. This is our time .. so we might as well get on, make amends where we can and move forward – not in fear but in faith = trust.
*) No actual Sydney Lord Mayors were harmed in the making of this video clip.
Love the story of how St. Francis took shelter from a sudden storm in a little ramshackle fallen-down country chapel, as he was winding his way happily walking through the fields of Tuscany (I’m assuming Assisi is in that part of Italy), doubtless talking to the assembled birds and creepy crawlies in their own animal lingo.
While trying to keep as dry and warm as was feasible in the chapel, which didn’t have much more to offer in the way of shelter, sanctuary or succour than a few half broken down walls and some parts of the roof that hadn’t as yet collapsed entirely, St. Francis – a sincere, uncomplicated man – apropos of nothing all of a sudden heard the thunderous voice of God saying, “Rebuild my church.”
Francis, Bless him, returned to the hovel over the following days, brandishing carpenters’ tools, timber and nails, paints and what-have-you.
Because, after all, God had told him to rebuild the church. In life, even when we can actually hear His voice or feel vaguely confident we can correctly discern which way the cosmic winds might be blowing, all too often we fail to grasp the mind-blowing, perplexing intricacy and simplicity of even our very own life trajectory as perceived from His vantage point.
Unless one happens to have a head start, so to speak, and all acceptable and societal pretence, pride and petty posturing is but a distant memory and one has been shocked by life events into deploying that infamous Big Picture Thinking as second nature and a matter of fact, it’s generally beyond our limited human scope, at least for those ‘this side of the looking glass’ to perceive through that dusty glass darkly on just how many seemingly paradoxical levels this type of ultimate missive may well be playing out, provided of course we are still able to muster a listening ear to begin with, needless to say.
Little did Francis realise that as a simple, earnest man of the poor, he would one day be honoured around the world as the founder of an Order that, among many other things, sought to refocus the spiritual GPS towards the core tenets and determined to just start again by putting themselves last, live simply and modestly and just help the poor, the sick, the needy without counting the cost or for any other reason whatsoever than the desire to do the Lord’s Work.
‘Rebuild My Church,’ indeed.
Next time, I might expand a bit on this kind of arcane lore or incomprehensible mumbo-jumbo.
Let’s have some light relief to underscore the fact that the author remains merely a foible-filled follower of the Nazarene with only a few faded minor delusions of grandeur.
I never quite know how this key aspect of yours truly comes across, even to my close friends. Whenever I dare to ruffle the Zuckerbergian feathers by posting anything overtly Catholic/Christian no one ever touches it – not even with a barge pole.
And while this doesn’t greatly bother or surprise me, it’s nice to be in touch with my natural father’s family again, as I have noticed my Aunt once or twice liking or commenting on such ‘outlandish’ FB contributions.
More importantly, it was so soothing to chat to my Uncle and Aunt recently. I learnt lots of new things about my birth family that delighted, worried, astounded, engrossed, uplifted and inspired me.
And no matter what I tried to convey with my crisis-addled speech impediment on full display in the lunch time cafe – drawing the usual inane stares and cares – they both instantly and intuitively seemed to pick up what I meant – with nearly every single nuance intact. This in itself was such a welcome relief for me, moreover given the fact that for one reason or another I have only been able to catch up with them a few times since making landfall at Kingsford Smith in 2008.
For instance, a resigned knowing smile told me I was, after all, very much like my birth father in some of my more colourful Celtic ways.
I also shared how last year, just a few yards from where we were sitting sipping our coffees, I had knelt at the tomb of Australia’s first saint, having just read about a recent visitor and fellow PD pilgrim from the US who had indeed been cured thanks to Mary McKillop’s intercession.
However, I went on to explain that my prayer had not been to ask to be healed. Rather, completely subconsciously I had found myself asking for a purpose in life other than merely being enabled somehow to stick around just for the sake of it – with or without this sinister affliction – and most likely an epilogue characterised by slowly fading away in not so splendid isolation.
While I know deep in my heart and am now sadly starting to accept that I will live out my life alone, I do require a sustainable reason to keep wanting to do so.
Or, as I thought to myself the other day when my local barista told me in a wonderfully encouraging and concerned way – “Sie sollen stark bleiben, aber ich weiss das Sie stark sind.”
I’d asked for the grace, wisdom and power to heal (active verb). I ‘d written about this quite a while ago here, and here
At the time, I tried to tell one or two kind friends about this experience, who said, ‘Well, whatever helps you can’t be a bad thing.’ This sentiment, while loving and caring, misses the point completely.
Last week, I had to dash back Blitzkrieg-style to my lodgings on the Mount. As I never know when my meds may all of a sudden stop working, I can get caught out and stopped in my tracks in a hundred different embarrassing ways.
I had already managed to order a coffee and a sausage roll from the kind staff in the cafe while literally not daring to stand still for a moment. Pacing up and down, reassuring them it was sort of completely normal in PD world, I tried to make it back to the flat without grinding to a halt, knowing also that before long the corner of the street would be humming with the Shore Grammar School mummies and daddies collecting their precious boys in their daily parade of shiny new Mercs, Audis, Beamers, Lexi ..
It wasn’t to be and I crashed on the bench in front of the Museum. Luckily, I was able to reach into my pocket and take my fail-safe Kinson just before my movements completely froze up.
But my anxiety only increased until I got a message from my Butterfly Princess saying she would be busy until early evening and then would probably be heading home having been offered a lift by a colleague as her own car was in the shop as our American friends say, with a new tyre being fitted.
For a moment no longer thinking about my own worries and desperate desire to head back up the Coast as soon as possible, I thought perhaps it would make sense to do one or two useful chores while in town and then at least offer to drive my lovely one home.
The very next moment, a wave of the deepest reassurance rolled over me. I looked up and saw a bleak and feeble sun on this chilly day suddenly growing intense and appear larger and larger as it peered at me through the thin branches of a small tree in front of the bench where I was sitting/treading water.
It’s always such a funny feeling just a split-second before you sense something significant is about to happen.
Still a bit frazzled, thinking about life and death, my Mother’s recent passing, my own dip in the Abyss still so raw and painful, I felt pleased at least it wouldn’t be such a hurried haphazard visit to the big smoke if I managed to hang on a bit longer.
The sun grew big and insistent again and somewhere deep within as well as outside of me, I heard or rather ‘felt with my ears’ ever so clearly:
“Make it last, make it worthwhile ..”
And well before the Larrikin in me could wax irreverent and bawdy:
“There is no need to worry, everything is taken care of ..”
Such sweet sorrow – As the world turns on its axes, with most civilians most scrambling to put together their lives again in some way now the CoRvid19 phase seems to be slowly ending, my lovely one too is working full pelt again and her own life’s responsibilities will of course be making more demands on her time.
As they say, all is fair in Agape and .. (can’t remember how it ends .. must be my mind slipping into pipe and slippers territory, never mind, c’est la guerre!)
Meanwhile, I am trying my best to get my bonce around the nitty gritty of all things NDIS. Five years on from being diagnosed, finally Thank God proper help seems within my grasp.
So many kind and wonderful people have been crucial in actually helping me crawl up to this elusive half-resisted finishing line. Some in an official, capacity some not, most helpful – it pains me to say – were those not affiliated in any way with officialdom.
Yet without fail, all of you I have in mind as we speak were amazing, accepting, encouraging.
***
My lovely one was, is and will always be very special to me. I’m sure we’ll keep in touch but for now, I feel a pang in my heart as we must somehow get on with our own lives as best we can for now.
At any rate, a huge thank you is in order. When life was at its darkest, and it has been and often still is a tad Dante-esk to say the least, she was right there with me in the trenches in the thick of it,
Fearless and funny, happy and smiling that dazzling sunray smile at me, superb in every way.
Not much energy to wield the old keyboard for too long but felt I just needed to pinpoint some hopeful glimmerings starting to appear in-between the ups and downs of the turmoil and pressure-cooker extravaganza that passes for my sojourn in this particular incarnation.
First thing today I caught up with some dear friends at my new local, a lovely cafe which is fast shaping up as a much prized hub for surf dudes & dudettes, the interminable dog walkers, the slightly older comfortable crowd, and Muggins.
As I am still trying to get on with this new drug regime and can easily get caught out and freeze up when I least expect it, I then had to head home to rest up.
And, a bit later as the sun had returned in its full majesty, I thought I’d just shuffle on down to the beach. Armed with merely a handful of coins in my threadbare pocket, I was hoping maybe they could yet see me organise a small chips from the Surf Club.
The door was locked so either the joint was shut or there was a function going on.
As I turned around thinking I’d better get back home as the meds were starting to wear off, who should I see getting out of his car but O. – one of this world’s all time good guys as well as manager without equal in charge of the cafe at Wamberal Surfers.
“Hey, Richard! How are you? Are you back?! You look much better. But you’re leaving it late,” said O. referring to my failed attempt to gain access to the premises.
It was so good to be welcomed in this way, impossible to explain all that had happened since the last time I’d seen him.
I never really expected to see O. and all those other lovely kind people around here ever again.
However, moments later Muggins had taken a seat in the sunshine at a nice picnic table in the adjacent Shoe Rugby Park, sipping from a supersized free long black ( ‘No Richard, my shout!’ ).
With so much good will around, I can’t help but starting to feel a smidgen more homeful – hopeful this place that almost slipped from my grasp – and still could – might actually become that haven for the harmed hearts, that sanctuary for the ones who don’t or can’t fall in line with the onerous generalised demands of everyday society’s marching rhythm.
The Beatles – The Fool on the Hill (Official Music Video) from Pablo Espinoza on Vimeo.
Or just a place for my friends and family as well as my adoring growing Ricardian guard of Amazonian bodyguards and myself to Relax at long last.
Sleeping in heavenly peace … Catholic churches are offering the homeless places to sleep in safety and peace. They provide blankets, fresh socks, basic hygiene kits, foot care, chaplaincy services, referrals to outside resources and even massage services and while visiting, are left to themselves to sleep, pray or just sit and relax out of the elements.
On the first morning of my recent stay at Villa Van Gogh, still reeling from the night’s fun and games and the raw impression of being wheel-chaired from the Emergency ward I could still fool myself I was doing the right thing.
All my swagger and Devil may care bollocks soon evaporated though when I realised how, after all those decades of near-misses I was now going to enter those actual doors marked Mental Health In-patients.
It was a sort of homecoming and I now realise that long and winding road which had always bedazzled me never did lead to a mysterious person I’d lost along the way or a star-crossed One that Got Away or even a Love-ya-Long Time (yes, please!).
It was always meant to lead me right there, not to any one person waiting for me with arms outstretched or anything that fanciful. It was a place – these ominous inward swinging doors to Hades Hospital.
However, I was fortunate enough to have a nurse with me all day in the beginning of this trip down memory pain. Or I should say I lucked out? Because my guardian carer/keeper proved to be a wonderfully gentle, yet strong no nonsense male nurse.
Slowly waking up, with my bruised senses reacquainting themselves with me one by one, I thought I could make out some very faint music in the distance somewhere, no doubt emanating from an approaching cleaner’s movable workstation..
The lovely thing about being a natural born Psychonaut & Paranoiac Black Belt Sensei is one’s highly-strung faculties, while obviously too often distorted, honed too finely or not at all, tend to easily reach much farther (or further, both are acceptable. I prefer farther) than those of most level-headed daylight types.
I couldn’t be entirely certain but before I could make out that familiar, unique and eminently evocative crystallic voice so loved by my Dutch family, and for me in hard times invariably signifying a subtle message from my dear late Dad, I knew it was …
“Hey, do you hear that?” I asked B.
“Eh .. yeah. I can try to find what the artist is if you like?” this lovely nurse offered, Samsung at the ready.
And, as a proud nephew to some of his Gurkha-legacied uncles now residing in old London town, B. of course was flexed and ready to use his device once it had been brought out.
“No, thank you, though, B.”
“I know the artists, I’m just puzzled by the celestial playlist on this occasion,” I murmured.
I’m still intrigued. It did the trick though and my tears were a welcome balm.
And now, while the double-whammy killer blows of two heavy-duty pieces of bad news still don’t seem to have registered with anyone ‘close’ to me, I find myself very close to jumping on – not in front of – any old train, plane or automobile out of here.
Surely, there must be a place somewhere this side of the Pearly Gates where even an odd one such as Captain Foolheardy may find a smile waiting for him without any billable hours needing to be involved?
Maybe there just isn’t, and don’t call me Shirley …
Haven’t heard anything in response to my plans to offer to collaborate on that guideline for mental health staff faced with YOPD pilgrims. Sent an upbeat, in-depth and extensive email to the Ward’s social worker.
I suppose my perception here must have been off-balance too.
You end up feeling so exposed every time you let your guard down and trust. But then I imagine they wouldn’t need to collaborate and have me needlessly darken those infamous doors like Banquo’s ghost. I sort of put it all out there on the site already.
Doh!
A very nice chap who delivered a very generous hamper before I’d taken myself for a short break at Inferno Holidays, sent me an email last Saturday morning.
Timed perfectly to arrive in my inbox just as I’d launched my polite compliant low-voiced campaign to perhaps at some point later that day have the issue addressed of Muggins still having to lie in his own filth and not having being able to have a wash, it read something like,
“Hi Richard, how are you? It’s just K. here. What a magnificent looking day. What are your plans for the weekend? I hope they include being out in the sun. I hope to go for a cycle and take advantage of the great weather. You mentioned your family in an earlier email, are they in Sydney? I have a son and a daughter both living in Sydney.”
“I’m in mental inpatients at RNS. Social worker here will contact P. on Monday. Thank you K. You don’t have to do anything. Maybe say a prayer.
Cheers mate,
Richard”
x+x
No one ever said there’s no humour, even deep within The Abyss.
x+x
Sorry it’s getting a tad esoteric now but what other highly meaningful (for my family members and me, that is) Seekers song do we know in which the imagery of a departing train looms large?
Can’t believe I was that obtuse! Okay, will give Muggins a pass I think. I wasn’t exactly in my right mind that morning ..
Apologies, my dear sisters (and little Bro) and nieces & nephews, here we go once more. “All aboard, mind The Gap..”
Unbelievable what a strange life. Do you want it? You can have it, no money to change hands, no questions asked.. GOL.
‘Out of Kilter, an auto-biography’…
Oh well, news about my elusive payout.
But The FoxMeister is running slower and slower and if you look closely (But why would you? Sure, I get’ya) you can see his left hind paw is losing muscle tone fast, and whereas his gait during ON periods (PDGoogle it) used to be straight, fast and decisive, he now seems to be wavering, tempted to just enter that terminal vortex of sad but oh so soothing ever decreasing circles …
… until those Hounds of Love have cornered Muggins for the very last time.
+
Yet you know, my Mohito Mama, that I remain honour-bound to keep my promise to you made that night in Amsterdam South. How clever of you to quickly loop that one around my leg! FoxTastic indeed.
Sorry, Ann-Mikey Noble Moon .. I never did lose sight of you. ‘Running up that Hill’, eh?Keep safe wherever you are, my only soul-mate on this stunning spinning sphere. So sorry I won’t be able to offer you that sun-drenched sanctuary, or show you some absolutely gobsmackingly beautiful sites along the Coast. My fellow-Sydneysiders for some reason insist 1) The Coast is a million miles away and once a friend moves there, it’s almost impossible to ever again visit them. 2) The Coast is a bit yampy (Pommy lingo alert) and not worth bothering with.
Yup, clueless. If they only thought of any of their former friends who made the huge voyage to that mystical land beyond the Mooney Mooney, then asked themselves how many of those reported back anything other than, ‘Should’ve done it decades ago ..’
Having said that, I don’t see why it should be either/or. But I am so sorry I won’t be able to show you those remarkable forest walks, mountain hikes, still country lanes reminiscent of the Wye Valley, and so much more.
I did get a shock when you so happily announced not too long ago that you’d planned to “Come over to see you in about 5 years!” I just no longer can afford to live on non-PD time..
Now, it appears I won’t be able to afford to live full-stop.
Still, back to that promise I made to you. It’s just the same principle which I’ve been trying to use to soothe some of my closest family members’ concerns. And when faced with a less than receptive level of understanding (or even a few giant clouds of unknowing) I sometimes just try to explain it by saying (with less and less of a swagger recently), ‘Unfortunately, I never give up..’
Time for a humour break, agreed Lady Luna? What does the label on your bag of tea read? I would have had a coffee but am no longer in possession of my lovely ClooneyCoffeeMaker deLuxe. Kick back and relax, even just for a second.
In the end I couldn’t avoid hospitalisation. How sad is that?
Voluntarily, though! How funny is that?
Until it became too dangerous for me to stay. How sad is that?
Keep the Faith I think you may have found, I don’t know what’s around the corner. I think it’s a public holiday on Monday.
I will try to keep sending you my Magpies, Division Groot R’dam, for as long as I can. Good news though de verdad, I have been able to help a few fellow stricken ones into the Chapel which is open again, Deo gratias. That’s the only job I really still might want to do. Pro bono, sure.
Will try to illustrate – am so tired of the never-ending explanation marathon – some key dynamics of my daily life atm as I once again try to get onto my knees, and then ever so slowly try to start walking again – all the while of course longing to run up the dunes in my birthday suit, admittedly showing off some left over boyish bravado, as I did that glorious sun-doused day on my secret Paradise beach not so long ago after spending just an hour or two with my darling one on that lonely stretch of blissful seclusion.
Did it really happen at all?
Today then. Caught up with my favourite local barista team, looking like a bush ranger or failed Karl Marx imitator (me, not them), as I’m sporting an ever more greying beard. They were happy, though also quite concerned when I once again rocked up at their cafe oasis.
“What happened?”
It was nice to have a quick chat, they are a lovely couple and of course I did mention that the recent article in which they featured got quite a bit of coverage as I hadn’t been able to remove its ‘main story’ status while on self-imposed gardening leave..
But I have been here so many times before. This troubled world is replete with big-hearted kind people. But I am growing increasingly wary of inflicting my crap on new people.
Climbed back up the hill, as always making sure no visitors to the Saint’s tomb (many of whom are from overseas and always seem very tentative and cautious about how to approach etc. ) as well as any other fellow-afflicted peeps clambering up the steep Mount, were not trampled by any of the peak hour ‘normals’.
Stopped off at another friendly haven, the cafe at the museum. Always a treat.
However, all of a sudden completely deflated, exhausted and panic-stricken beyond all reason as one of my neighbours, our resident official curtain twitcher, quasi-helpfully asked, “Hi, all better? Now?”
I knew exactly what she meant.
The remainder of the day I shan’t be doing ought but work on getting used to the new meds.
What a classic, classy send-off! You can’t make this stuff up, well actually.. Much more to tell, much later. Am on a new cast-iron, workable, drug regime. Rest and incrementally making my way back to some plane where a few more things make near-sense are the order of the day.
Left on the best of terms. And it had to be T. giving me my last 3 PM Kinson, on the dot, and D. walking me out to the front gate. What a gent..
And together, these paragons of mental health nursing care have in fact provided me with my remaining raison d’etre; to devise a no-nonsense quick check fact sheet to help both Mental Health nursing staff and PD peeps who also have severe mental health issues, either as part of the psychological goody bag that comes free with a PD diagnosis, and may include depression, anxiety, paranoia, lethargy, agoraphobia, mild hallucinations or indeed they may be more like Muggins (while of course unlikely to be as devastatingly handsome) who presented voluntarily with both those components clearly on display.
In addition, I always bring my underlying incumbent quirky bag of tricks, or schizo-affective disorder. So, it was never going to be a walk in the park …
After no. 2 I would add: OR VERY LOUD!! (mea culpa, Capi X)
UPDATE: Little did I know I’d used all my vulpine trickery to pre-emptively pull the strings of the well-intentioned but hopelessly clueless hard-working staff *) at the Anti-Sanctuary**) from which I had barely escaped with my life, only to find upon arrival in my once-secure private Wavertonian retreat, that the NDIS application submitted a couple of weeks prior to my headlong dash in search of safety if not sanctuary had .. been.. you’ve guessed it..
NUMBER #3 APPARENTLY APPLIES TO MOST MEN, PD OR NO PD
Water under the bridge and plenty of it. I think this was the night I chose to re-watch Awakenings ..
Just got back from my customary 5 minute dash to the gemutlichkeit of getting a quick coffee and fruhstuck from E und T, cafe king and queen par excellence at Greenwood Shopping Centre.
When times are tough, which is certainly the case for Muggins right now, I tend to revert back to that most ancient and powerful strain within my hybrid wayward legacy.
Or, as I once described to a friend this feeling of needing to retreat behind the fortress walls of my own private Camelot as ‘having to go full-Celtic.’
Still, it was nice to be able to leave the house just for 5 minutes for the first time in two days.
I love languages, words, communication of any kind, so on days when I feel I might be even slightly understood, I want to make the most of it.
This morning, then, saw me torturing poor T. with childhood memories of happy holidays spent at a campsite on the shores of Maria Laach near Koblenz, and how I enjoyed savoury dishes involving bockwurst et cetera while with E., I discussed the pressing issue of why on earth German whipped cream doesn’t contain any sugar.
Still, it’s always nice to have a little chat with this lovely welcoming couple. And the coffee is outstanding, just like their wide selection of brekkie and lunch goodies.
Let’s hope today will be a good day .. Always look on the bright side of life, right?
Trying to get some rest today – a very important priority – proved impossible.
What was a unorthodox shy exhibitionist libertarian oddball to do?
So in the end Muggins decided to turn his focus outward. Away from my own horrendous preoccupations and checked out my good friend’s new YT podcast venture:
I think she’s a natural when it comes to making that instantly soothing connection with people, either in person or in front of the camera.
I recently had a go myself at putting up one or two vids on my video channel but in a fluke of momentary sanity decided to take it down again. After all, call me old-fashioned, needlessly bitter and/or incredibly jaded but I am now convinced no one needs or even truly wants to know what it’s really like; having an old person’s affliction while feeling anything but like an old geezer.
No one wants to see that. So, we’ll just keep trying – to no avail – to keep answering the same old insipid yet well-meaning questions verbally over and over again as best we can and as long as the fickle gods that manage my waning speech capacity some times seem to have a day off.
Oh well, gotta have a laugh ..
But on the bright side, it also dawned on me that at least I had never fallen for the dead-end broken dream of owning a small independent bookstore. Looking at Black Books first ever episode again for the first time in years, it struck me that my personality and wide selection of foibles could quite nicely overlap with Dylan Moran’s portrayal.
I love the sequence where – with his unhinged Irish Catholic passionate invitation to come in and talk about Jesus – he utterly terrifies the hapless putative proselytisers. I’ve actually been in that scenario myself once or twice. I also heartily recommend episode 2 Manny’s First Day.
.. However, that doesn’t mean Muggins can’t go and catch up with his friends, the Five Dock Four and join them for a chill out session at their secret sanctuary.
Thanks guys! Looking forward to kicking back and unwinding … after all, there is much to unwind. Gotta have a laugh, in fact …
For years I used to inflict my dad-joke type hilarious announcement of “I’ll be 29 already this upcoming birthday!” And yes, I enjoyed the groaning and half-smiles this invariably used to raise. Of course, this was when I had a family of my own to dadjoke around.
I’ve recently started telling my family and one or two friends now, that henceforth I shan’t be celebrating any more of my birthdays. No great drama or anything, there’s just nothing to celebrate.
And no need for any well-meaning easy-peasey hopey-lovey-lifey memes. It’s not a matter of being pessimistic. It’s just being realistic. I won’t be celebrating – I will be counting down ..
Again, for those thinking I am not a very optimistic kind of so-and-so, that’s really not what is happening here. Just look up YOPD and how the only thing about PD that we can be remotely certain about is that it will inevitably get worse. All the time. No matter what. And it hasn’t been that great up to now or right now, for that matter.
Add to that the manner in which I’ve been obliged to live these past few years, forever trying desperately to forge some kind of mini-future against the odds and then some, and perhaps you’ll understand I am getting very very tired.
Still in the process of trying to disentangle myself from my slice of Paradise, I am hanging on this very week hoping to find out whether or not a modicum of a semblance of something one might call a life of sorts might yet be on the cards.
Funny how one’s own mind can feel so detached and alien, almost hostile at times like some menacing crafty interloper; so familiar and yet so eerily uneasy at the same time.
All my life I had been convinced that this tiny Marian medal, which apparently I sported when my new foster family first laid eyes on me on the doorstep of that self built house in Canley Heights, had been pinned to my jumper by my natural mother.
I suppose I wanted to believe she had sent me off into the big bad world with Our Mother – while of course she herself would have sadly suspected she wouldn’t be seeing me ever again.
Years later, in a crowded fragrant Balmain pub I had a chance to ask her in person. She studied the little trinket for a few moments, then said, “No, I’ve never seen this.”
Too much to ask for, somehow? What was he thinking, giving his all for a chance to live a few more years in relative comfort? And I love this one, ‘It’s far too expensive for you, too large anyway.’
Suppose following that logic, the minute I was diagnosed – five years ago – I should have crumbled and turned myself into the cookie-cutter image of the sorry little shuffling old man, on an old man’s little pension, content to live a little in a little social housing flat.
Perhaps I would have had at least some say in which colour PJs or which kind of slippers I wanted to be decked out into for a morning’s window peering into nothingness.
To Hell with that. But then, there will always be repercussions for those not content to fit any old mould any old time.
And onwards and downwards we go..
Still, it would have been nice. I had so many plans for that perfect little slice of paradise. Sound, solid plans too, I might add.
But alas, it wasn’t to be. Never even got to fill up that lovely great walled bookcase. I’d always dreamt of one day perhaps living somewhere where I would have one of those white book cases covering part or even all of a wall.
I used to admire the sight of those huge book-wall-cases so much when I noticed how smart they appeared to me, denoting something of a haven, an oasis for the oddball within.
I remember almost always seeing these bookcases when visiting a wealthy left-wing thinker who usually didn’t even think twice about it. Just a few books right?
Never one to feel entitled to anything at all on this mortal coil, it conveyed such comfort and sanctuary to one such as me..
And then there was my ‘office’ or ‘study’ or dare I say it, ‘den’ ..
Well, at least that last story written before my voluntary gardening leave was written there, finally having come around to installing my cherished Big Mac.
‘I’ll see you in five years’ – ‘It’s only six months’
Time flies when you’re surviving day by day, hour by hour.
Forced to make a sleek sideways move again, this time though thoroughly enjoying the semi-cloak of invisibility offered by a new determination to no longer expose my inner workings such as they may be, to all and sundry whether they like to be privy to all that melancholy madness or not. Or as I put it to a friend, ‘a fox cannot survive if he keeps broadcasting his every move.’
How refreshing to have all that misery and mental squalor all to my myself. Seriously, there is something so liberating about no longer caring one jot about FB, emails. SMS, smoke signals, morse code.
Although, I must admit now again seeing some little meaningful omens leading me to believe I was led back here. And so it seems as though La MacKillop still has some designs on me .. this funny little enclave, this stand-out outstanding sanctuary filled to the brim with those things that can truly warm the cockles of an inveterate Papist’s heart.
A quiet life is the order of the day, preferably one where I no longer feel compelled to keep talking, explaining and reaching out. I may yet take a voluntary vow of silence.
Probably the single most lonely moment of my life in nice genteel surroundings ..
Following a quiet little interlude on this lovely terrace, during which I plumbed the depths of a couple of new circles of Hell I hadn’t yet been given the keys to previously, I ended up wandering the night time streets of my beloved city for hours on end. Whether it was essential, I can’t be sure. It was pretty existential though, does that count?
However, even here an unexpected silver lining appeared just as I was growing despondent to the point of utter despair. How horrifically ironic and paradoxically cruel that while I have no shortage of female friends all across the world, some of whom quite aware of my uphill struggle in certain sensitive areas, with the best will in the world all these wonderful confidantes could ever offer – obviously – is empathy and understanding.
And while I walked around that fateful intersection near Town Hall and Pitt St. it dawned on me that now so clearly I knew that I always had been, am and will ever be singular, special, out of kilter, weird, mad, whatever… alone.
But now, for the first time that realisation no longer attached itself to the familiar forlorn feelings of morose self-pity, deep depression or sadness. Now I know in the core of my being, well let’s no longer pretend. I am free. Free to live my own bizarre life the best way I feel I can muster at this stage.
Most of my friends and family remember me pestering them to watch Heather’s startlingly informative and elegant video A Mountain at my Gate ..
.. and how it inspired me to try and look beyond my own diagnosis, believing I too might yet have some goals left to achieve, albeit of course that once you’re plucked away from the rat race and the daily cares and worries of most – because you’ve been reeling for a couple of years, trying to come to terms with this crappy card some creepy cosmic croupier has dealt you – in clear bold letters framing that famous Big Picture view offered to those who haven’t sailed through life unscathed, to put it mildly, is the message that whatever you choose to do while you see your time running out, better had be about something more than merely making sure you yourself are comfortable.
To me, that’s no longer a satisfactory definition of living. It has to be about contributing, doing something out there for others, for new frantic and frazzled sufferers, as well as their carers, husbands and wives, partners, families and friends.. And of course, I still have a bone to pick the size of the part of Uluru you can’t see around that ole Satan called Sifrol.
But I am starting to doubt I will ever find a way to deal with its wholly sinister and nefarious repercussions myself, let alone be in a position to really help anyone else, apart from jumping on PD fora and watching out for those “Hi guys, my husband/wife/whatever’s been prescribed Sifrol. Any thoughts?” shockers. Which is when I come swooping down like a wrecking ball shapeshifter, “Thoughts? Yep, like regrets, I’ve had a few ..”
In short, I was impressed how in that 5-minute clip, Heather often without any words at all, answered some of my posse’s earnest questions better, more coherently than I, Senor Chatterbox could ever hope to do. For me, the 2-second bit where she fumbles with the belt loops on her jeans and those bloody bloody belts that never ever fit properly, got me right in the smacker when I saw it first.
Now, year 5 since diagnosis, I still haven’t got around to investing in a solid hole punch, a perennial problem my Tiffany fixed for me in five minutes flat, in the wink of an eye ..
But these things also become more and more tiresome for us PD Pilgrims ourselves. What I can do now and how I manage to do it won’t be a stable situation for any foreseeable time. What I mean is, the only thing we know about this freaky-deaky thing is, it ain’t gonna get better.
That’s not being negative, it’s being realistic. I think the most insulting thing anyone can do is pretend to know better than the person standing stammering and shaking in front of you..
I almost caught up with Heather during my last telco journo jaunt to Silicon Valley but the demi-gods of travel logistics and UB40 hit single based domestic calamities stood in our way.
However, I must ask her about this brazen gal doing a bit of a dance about Comtan. (The Comtan Ladies sing this song, Dopa! Dopa!)
That, then, of course reminds me of this little piece of knowing film satire:
But anyway, about that medical jazzercise dame? Hmmm ..
Must be a relative of Heather’s staying with her or something .. no surprise though, that I do sort of like the cut of her gib.
I remember a fellow PD traveller once enjoying my turn of phrase in describing my struggle with getting onto some heavy duty PD dope. I too remember those heady days, and sadly at times feel not much has changed.
I mean, I am forever grateful for new friends, lovely neighbours, supporting locals et cetera. But when I recall how I dragged myself uphill to the GP surgery that day, shaking and hopping as I crossed the threshold of the practice – in real anguish for a plethora of reasons, not least of which the fact that the dreaded Madopar had once again nearly off’ed me, and no actual help or even understanding had been forthcoming when I stammered my acute and very real cry for help down the phone to the put upon, dismissive receptionist – only to have the misfortune of meeting a male doctor who, it being a bright Saturday morning not long from closing time, clearly just wanted to get the inferno out of there and join his kids for the rugby/tennis/swimming/lacrosse/polo or whatever – I feel a blanket of forlorn morose silent resignation descend all around me.
The last thing he needed was an actual patient in actual need of actual help. And certainly not some wild man of the woods who had been flapping and flailing about on the benches in the waiting room for half an hour waiting to see a professional who had taken the Hippocratic oath. So off-putting on a nice bright Saturday morning in a sleepy seaside town.
Oh well. I’m getting so tired of just not getting anywhere .. literally, figuratively, physically, mentally and in a few dozen other respects as well.
Forever living in fear of people misunderstanding me, I find myself talking and repeating, summarising, recapping and writing and over-thinking just about every single moment of my life these past four of five years.
And this is while I am learning that those very few people who actually have drawn the unlucky ticket to be granted a peek inside the volatile vortex that spins within, already have twigged at some point that, no matter what foolishness some semi-controlled wayward part of my waning brain cells may choose to allow my outward facade to rub shoulders with, it all started once upon a time with a measure of modest sincerity.
In the now non-existent South Sydney Women’s Hospital in the Inner-West. I remember my late natural mother showing me the site where on that Empire Day – no longer observed of course – I first was introduced to this world against the backdrop of a sky filled with fireworks and general mayhem and mirth. Pointing at a nondescript little alleyway with some nondescript little cars strewn along a nondescript little row of dim-lit townhouses, she said, “I think this is where the hospital once stood.”
‘They turn nasty,’ some say encouragingly of PD patients. I can’t deny that in accordance with that fabled image of the sand in my own personal hourglass inexorably running down faster and faster, my fuse which granted once stretched unusually far has indeed been getting a lot shorter at times.
I’m now again starting to wonder about this lock-in scenario… some very odd things starting to become the new normal for people who until very recently questioned so many things odd or otherwise.
Que sera, sera. The hermit lifestyle then? Now, it’s all the rage. I thought I had cornered that market yonks ago.
I was once asked by a career guidance ‘counselor’ what kind of job I’d like to have when I grew up. “Writer or light-housekeeper,” I replied so quickly he startled a bit, no doubt used to pupils umming and ahing for a long time before saying ‘something in IT’.
* Tune in next time when I will be revisiting some of my personal favourite highlights from 2019, some of which include: Barcelona or Bust or How I killed off MWC, Washaway Beach or How I nearly came a cropper but was saved by the WestPac Chopper, Yes I know the Way to San Jose or Not Meeting Miss Inspiration.
A close female friend – exasperated by some boorish behaviour on the part of perhaps one of our less enlightened brethren – asked me a few years ago why some/most/all men seem so preoccupied with the allure of all things feminine. [ I am paraphrasing ..]
I can’t speak for anyone else. I do remember, however, telling her I believed there was a very clearly demarcated difference between for instance a nice looking girl taking her iPhone for a walk and minding her own instagrambusiness while a reasonably courteous-looking dude makes a modest – yet ostentatious – point of allowing her all the time in the world to cross the road in front of his car, and the same girl a few blocks down having to run the gauntlet of some meatheads ogling and wolf-whistling in a pathetic pack mentality, like so many rabid dogs with their tongues hanging out.
I think depending on a few variables, the first scenario may or may not be a bit of harmless fun, cheeky but just about still enjoyable for both parties. I think for a lot of women or girls, mixed-in with the second scenario something else creeps in, an element of intimidation; something without which a certain kind of brutish ultra-weak pendejo can’t seem to approach any of the women in his life.
Needless to say, I don’t regard these types as my brethren. But I could be wrong. I probably am, gauging by the way this day is shaping up.
Why do I love, love, love women, as well as the whole age-old yet evergreen interplay of any kind of communication of whatever nature, including but not limited to emotional, mental, spiritual, physical as well as tele-communication (sorry, had to get it in there*)?
Because I have had the good fortune to know and experience the kind of crackling electric vibes that can flash from man to woman and back again, such as those on show here. It’s a example that’s all.
What can I say? Unless he’s in a coma or pushing up the daisies, I’d advise against trusting any straight bloke claiming not to be stirred or shaken by this kind of ‘energy’…
But I could be wrong. I probably am, gauging by the way this day started out.
By no means it’s only about ‘that thing, that thing, that thing’ .. And yes, real life all too often pales into insignificance in comparison.
Let’s see if a bit of Mr Cool Weller can lift my spirits.
BTW, bit of a swine of a day today anyway. Had to chuck out a horrible unwieldy last resort gadget in the trash .. and ..
Oh, damn! Nearly forgot to answer my own question. Why do I love, love, love women so much?
Two beautiful sounding words .. could they be girls’ names? I remember once, in a Sainsbury’s in Kingswood, Bristol hearing a mum call out for her progeny in the next aisle: “Jericho! Leave those Wagonwheels alone, come on! We haven’t got much time!”
I finds her choice choice of name gert lush. How about you, my luvverr?
I am picking my financial battles right now, like every one is suppose, and so I’m choosing not to have Netflix, which I don’t really like anyway or another such provider. But I do want an escape option as I can’t expose myself to the breathless assault on the senses of the sheer-rolling news coverage on the commercial TV stations.
And of course, the phrase ‘News on the ABC’ is in itself a misnomer, since they at some point made a conscious decision to disregard the law and their own charter and opted to only represent a small very vocal minority within the Australian demographic (BTW, please! Anyone with some pennies to spare, consider subscribing to .. no, not the Oz but the SMH! Am bloody serious too but that’s another story) – there’s no point whatsoever for anyone still capable of kick starting that very last brain cell to take any notice of their particular brand of lazy cookie-cutter undergrad agitprop.
I love how earnest they seem when they go, ‘And now over to .. (another ABC group-think processed member of staff) to find out the latest about … an issue where there’s really just one possible way of interpreting the essence of the story. Isn’t that right, recent Sydney Uni gradate no. 2 ?”
“Absolutely, recent Sydney Uni graduate no. 1. Scientists say …”
[Ad infinitum, ad nauseam]
Oh well. Let’s turn our gaze towards the lighter side of life. Credit where credit’s due, you won’t find decent satire like The Librarians or Utopia anywhere else.
So, serendipity. Having watched quite a few docos on Mr Schicklgruber recently, YouTube must have thought as long as that keyword matched any of its new AI powered search results, I’d be as happy as a sand boy.
In this case I was, and after I awoke refreshed and actually capable of walking rightaway following a fantastic much-needed remedial treatment, YT greeted me with this startlingly raucous bit of Pommy humour.
It made me think of a hundred things at once. About how sad I was when I heard Rik Mayall had passed away. I always felt he might have had something truly remarkable in him that hadn’t yet been tapped.
Or the episode where the unlikely housemates rock up at a dating agency where a hopeless romantic 42-or something, asks Eddie Hitler, “Any relation?”
– “What d’ya mean?”
“Ahem .. no nothing. So, Mister Hitler, I see on your form that ideally you’d like to meet someone like Kim Basinger?”
As the world’s multitudes prepare to take the bait currently being cooked up for them, fooling themselves that Gaia is merely having a hissy fit and teaching those nasty capitalist institutions a long overdue lesson, I find myself brought down to my knees once more.
Far from secure in the knowledge that I would be deemed worthy to be permitted to keep shuffling along, regardless of who or what will be the next temporal authority, it’s clear to me that I am in no state to offer anyone anywhere any advice of any kind.
The cards stacked against me now are ominous and demoralising in such a way that since even the most innocent approximation of any carnal experience at all is being surgically removed from my life in such a brutal fashion, even to the extent that a mere massage therapy session to relieve an ever-increasing pain on the left hand side of my body which is growing colder and more rigid day by day, is no longer an option, let alone the prospect of any genuine or even procured professional comfort, I have no recourse at all but to try to adopt a would-be ascetic desert father approach and try to find my refuge in the spirit.
All the while knowing full well it cannot work. It won’t be allowed while I still draw breath..
In short, I won’t be doing much else apart from starving the flesh in a last ditch attempt to vanquish the bane of my life S. As my incredible former Editor used to say to me before any jaunt, ‘See you on the other side ..’
.. or how about some of these (s)experts try thinking outside of the box for a bloody change?
Not being funny but how helpful really are these poncy pundits pontificating on something that actually for quite a few people could be a tad more vital than just another side-issue worthy of not much more attention than a few giggly column inches at best?
Basically, what is being provided here amounts to not much more than: ‘Not a clue really. So far we think penetration doesn’t equal contamination but hey!? Your guess is as good as mine – even though I am supposed to be some kind of expert.
‘Why don’t you try avoiding any of that kissing malarkey and sticking to any regular partners you may find already lurking about somewhere in the place where you live?’
‘Or, if you absolutely cannot find any safe partners anywhere in the kitchen cupboards, or in that odd triangular storage room underneath the stairs or even in that drawer in which you seem to chuck all your rubber bands, used-up batteries and obsolete foreign coins, there’s always such wonderful new inventions you might want to give a go, such as … ahem … video calling … international masturbation or even sexting?’
It’s enough to make you want to call Sting, well almost …
Of course, I have much more to say on the whole viral conundrum but for now, keep it simple & keep it local perhaps?
If nothing else, although it seems like the ultimate post-modern Me-generation type crisis where, bizarrely but in terms of Zeitgeist itself so incredibly appropriately, the advice is not to band together but rather to find a solitary ice floe on which to drift off into one’s own preferred isolation oblivion.
But, I promised to keep it simple and local. Later more thoughts on previous comments made by Gaianistic luminaries such as Bill Gates and David Attenborough along the lines of how beneficial it would be for Mother Earth and the UN’s blueprint for supra-national hegemony, should She shed a large swathe of those pesky bipeds once and for all.
Since writing this blog post and having learnt first hand from family and friends in Europe some of the extent to which the spread of the Crown virus has started to wreak havoc, I do of course express my support generally and prayers for those afflicted and those who have lost loved-ones – my attempt at acerbic wit notwithstanding.
Well, well. Turns out we’ll all be living in interesting times. Love how the media makes a big deal out of the media hype around this heart/crown/coronary virus..
I’m not one for silly hysterical doom scenarios, I leave that to the AlGoreans and the neo-Marxist wealth redistributors trying to safeguard the future …. of their own global warmening powered local government contracts, university tenure lecture positions and so on..
Remember when the concept of higher education included as a given the freedom to express, explore and critique any and every kind of idea? Sadly, these days the word college – as our North American friends call it – serves merely as a new definition of the opposite of diversity.
But I did sit up straight when I saw the US President take a departure from his usual self-righteous posturing, last year I think it was when he sold the Kurds down the river and opened the gates of the road to Zion for the forces of Gog and Magog.
This road-map itinerary also features a brief stop-over at a valley called Harmageddon or something. It was quite uncanny, though, as I detected in his normally so brazen and puffed-up persona and arrogant boastful voice a genuine fearful trembling.
As if his hand had been forced and some part of him realised what he had set in motion. What’s in a name? I ask as President Herald perhaps trumpeted a certain phase of a certain little bestseller or shall we say cliffhanger?
Still, no need to panic until they tell you the twelve tribes have all returned and work on the new Temple has started.
Let’s hope this funny old virus scare runs its course pretty fast and a vaccine is developed.
After all, we’ve seen major influenza scares as well. However, do take note when you see the crisis worsen until there is general panic and true global mayhem.
Then, if from an unlikely source, some proverbial bright spark all of a sudden takes the stage with a mock-miraculous solution presented with a spectacular light show to bedazzle the gullible and the secular, (a solution which accidentally will necessitate a global unified response, some kind of global supra-national oversight and authority) you know we might be in for a bit of a rocky ride.
Still no need to fret, I suppose. And yes, by all means dismiss this post as another one of my funny turns. I promise to take my meds (including a Bex) and have a lie-down.
Perhaps just regard this as a kind service to those post-Christian chums who may not ‘have got the memo.. ‘
It could be time to stock up on your Gautama dolls, your dream catchers, your signed copies of The Selfish Gene or your Runic alphabet soup.
.. is how Stephen Fry quipped about his film role as the great Irish wit. Personally, I loved the writer’s one-liners or aphorisms almost as much as his plays or poems.
After all, it’s hard for me not to like this little pearl:
My sister used to call me Ricochet Rabbit when I was a wee lad. These days I feel more like Ricochet Roller Coaster or something.
Perhaps it’s just me feeling I constantly have to play catch-up to events being rearranged, goal posts forever being moved hither and dither and the best-laid plans of mice and men as well as me myself and I, seeming at one point to be fairly robust and promising, yet when I turn back to them a fragment of time later, these potential brilliant plans, designs and contingencies appear to be nothing more than mere vapour trails.
So many handfuls of puffs of smoke – still eerily evocative of an ever so distant impression something of note might once have been connected to this particular lingering sensation.
Yesterday I felt so good. Yet today is another harrowing deep dive exploration of the Abyss with at least more than one pair of eyes staring back at me (..)
Someone mentioned the word comfort zone, and it only occurred to me much later that, in fact, I would give anything for a comfort zone. What do they look like? Where can you get one of those?
As my radius is bound to once again decrease in scope for a while, due to my driver’s licence being suspended for the nest six months, my daily bothering of ‘the nice real people with actual lives’ will have to be re-focused more towards Terrigal and that section of my street as the dazzling lights of Wamberal CBD are much harder to access for those on foot or using the bus.
(However, the silver lining is that it’s a bonus for me to think some of the lovely people working in this little hospitable precinct will be able to enjoy a much deserved Ricardian holiday.)
The closest I feel I ever may have come to being able to relax into a semblance of reassurance and tranquillity, was during some memorable long-haul flights. I simply loved that ephemeral in-between sensation of having left one place while not yet having arrived anywhere else.
In a funny way, it seemed to be my natural habitat.
One could call it a vacuum, limbo or a hiatus, I suppose. To me, it was sanctuary, here at least for a few hours, ‘they’ couldn’t grab hold of me, not even Mr. Bloody Parkinson’s himself.
Just about to watch Awakenings.. had really hoped to be able to watch it together with someone else but hey, what are you gonna do? I ain’t gonna hire someone to come and watch it with me ..
I have seen it many moons ago, aeons before L-Dopa meant anything to me, certainly way before that unwelcome lodger Mr. Bloody Parkinson’s crashed into the hovel that my life was soon to become..
A black coffee rather than popcorn for this one, methinks..
Trailer for Penny Marshall’s film starring Robert De Niro, Robin Williams, Julie Kavner, Ruth Nelson, John Heard, Penelope Ann Miller, Alice Drummond, Max von Sydow, Judith Malina, Barton Heyman, George Martin, Anne Meara, Richard Libertini, Laura Esterman, Dexter Gordon, Jayne Haynes, Keith Diamond, Bradley Whitford, Peter Stormare, Mary Alice, Waheedah Ahmad, Vincent Pastore:
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Awakenings is a 1990 American drama film based on Oliver Sacks‘s 1973 memoir of the same title. It tells the story of a fictional character, Dr. Malcolm Sayer, which is based on a real life experience of the author, who, in 1969, discovers beneficial effects of the drug L-Dopa. He administers it to catatonic patients who survived the 1917–28 epidemic of encephalitis lethargica. Leonard Lowe and the rest of the patients are awakened after decades and have to deal with a new life in a new time. The film was nominated for three Academy Awards.
This week, I decided to teach a beautiful and nurturing gentle flow ✨ A flow designed to invite us to connect deeper with our body through slow and gentle stretches. A really beautiful way to induce stillness and calm. A magical opportunity to find contentment in the stillness we have the opportunity to surrender into in this class 🙏🏽
Good to see good things happening to good people, well done Jessa! I am hoping to provide an update on my own awareness raising plans in this area shortly.
Jessa says: Introducing The Nude Blogger – my first ever YouTube video!
Pretty please watch, share, subscribe and give it a thumbs up 👍 your support will help me to spread this message far and wide 😊
I am so excited to announce my debut on YouTube…it’s a little rough around the edges, but it’s authentic to me and where the blog is currently at. It will continue to expand and evolve, and I’m excited to have you here for the ride.
Remember to subscribe to my channel so that you don’t miss a thing!
This YouTube channel is going to allow me to continue empowering and inspiring more and more people…and I am honoured. As always, thank you so much for all of your continued and ongoing support. Eye honour YOU.
Sometimes it dawns on me with some force that, all things considered, the single most volatile element in my life is a reliably unpredictable character trait, which finds its origin in my own rather unorthodox way of seeing things.
In other words, as I joked to my carer C. early last week, “You must think I’m mad.”
“Only sometimes,” she retorted. Sometimes I’m mad? Or she only thinks I am intermittently? Let’s not dwell on this. That way lies.. ahem… madness.
Feeling quite isolated over the weekend, and let’s face it, being a dedicated follower of the March Hare will do that, I soothed myself by checking out a BBC doco about my all time favourite actor Richard Sellers. You may know him as Peter Sellers.
I noted how even his closest friends and colleagues described the extent to which he was able to allow a character he was playing to inhabit his entire being as uncanny, extraordinary, unsettling.
Even Spike Milligan, a bit of an eccentric character himself to put it mildly, seemed non-plussed and even a tad unsettled many years later when reminiscing about some of the quirks and idiosyncrasies of his fellow-Goon.
For me, his comic genius – where of course his stupendous talent for mimicry was best showcased – was utterly enjoyable at so many levels.
However, I feel his penultimate film playing Chancey Gardiner in the film adaptation of Kozinski’s startling novel Being There will remain his legacy marker, and quite a spooky one at that.
His son Michael who bore much of the brunt of the domestic ire and frustration of this public genius/private tyrant, said about this film, ‘As his son it’s moving to see him like this. I don’t think he needed to stretch too far to find how to manifest this role.’ [paraphrased]
Another of his close colleagues said, “He was an astounding talent. But talent on its own isn’t really enough; you have to have the talent to manage your talent and I don’t think Peter ever had that..”
One time, Sellars found he was infatuated with the stunning wife of a friend/colleague and rather than engage in any surreptitious shenanigans, opted simply to tell his friend who replied by saying he couldn’t fault the putative interloper’s taste.
However, he added that he wondered why Sellars notified him of his feelings and intentions in such a open and direct way.
Sellars said something about respecting his amigo too much to go behind his back and so on. Seemed he just wanted or even sort of expected to walk away with some kind of fiat to philander…
Said his friend, “But then Peter so often was, really, quite quite mad.”
Following the demise of yet another valiant attempt by my intrepid PD medical support team to dream up some labyrinthine cocktail of L-Dopa and assorted agonists that could offer muggins the semblance of a baseline quality of life, it was back to the drawing board again yesterday as my specialist explained some of the remaining chemical pathways on offer.
While at one point my vocal capabilities had improved to near-Kamahl levels on the swoontastic scale, by yesterday however I had unwittingly won at least three John Merrick voice imitation contests. Odd, as I had no idea someone had put my name down to take part but also a bit weird for such a specific talent-show to be conceived of and staged in the first place.
Bit niche interest, if you ask me. Perhaps it was one of those ‘vivid dreams’ many PD pilgrims seem to have at some point during their PD careers.
Asked during my appointment whether I’d had any hallucinations, I reassured my wonderfully gentle PD nurse, “Nah, nothing interesting.”
“I might phrase that a bit differently on the form,” he smiled, noting down some data on the checklist we tend go through before being allowed to enter the hallowed inner sanctum for my audience with the Neurologist. (In jest, I actually like, trust and respect my current specialist)
“In terms of managing the compulsive behaviour aspects, on a scale of 1 to 5, how would you say you’ve been managing those?” the next question exploded.
Flummoxed and growing increasingly worked-up and inaudible, I struggled manfully/pathetically to convey my bafflement at being asked this question for the first time here, and in such a matter of fact way at that.
Was it not on the files somewhere that this pressing issue had in fact razed to the ground the very last remnants of my erstwhile life?
Had the question not been relevant on previous occasions? Was this vexed bugbear, that overbearing obscene and sinister bane of my life really going to allow itself to be caught in the matrix of these cold ongoing stats and records?
I tried to ask, ‘Do you mean you’ve heard of any management strategies that have a hope in Hell of succeeding in terms of dealing with my own particular set of powerful peccadilloes?’
My heart sank through the floor – probably all the way down, down down, deeper and down – when the answer to my admittedly quite unintelligible quandary proved to be a wholly superfluous overview of the various possible compulsive behaviour side-effects of most, if not all, PD drugs.
“It could be gambling, or over-spending, or hoarding, or …”
The mind boggles. But then again, all through the day I’d noticed a cavalcade of friendly faces indicate ever so kindly they hadn’t a clue what on earth I was stammering about.
Yet let’s end on an upbeat note. For the first time I’d allowed myself to be optimistic as I had to admit the now aborted meds trial had in fact shown some real promise. However, I had to pull the plug again as I ended up unable to move when I knew I needed to, leaving me once again prey to any real hazards as well as my own recent addition of a fresh selection of anxiety-induced fears & foibles.
Meanwhile I knew my fail-safe lifesavers, a small plastic container containing the contents of the instant remedy to any current calamity, i.e some Kinson tablets, were – in theory – within easy reach in the front-left pocket of my shorts.
But having just frozen up without any real warning ahead of time, it was physically impossible to manipulate my arm, even to just slightly lift up my T-shirt and grab the small pillbox. And yet I could drive .. but drive where?
Call me old-fashioned but somehow I don’t think stopping a random pedestrian in his or her tracks to urgently plead with them, “Sorry!! Would you mind reaching your hand in my pocket to get my pills?!! As quick as you like!?” would have met with a favourable response.
Then I remembered how nearly all proprietors and staff working in and around the bright lights of Wamberal CBD by now had grown accustomed to my at times rather noteworthy and erratic comings and goings.
In particular the friendly couple A. and T. at the newsagent’s had been very supportive, almost right from the start of my shaky sea-change. And as Lady Fortuna would have it, I was able to park right in front of the shop.
Spotting no punters at the register, I hopped like a scarecrow on acid right around the desk towards T. who immediately asked what it was I needed?
Interestingly, sometimes even while being hurled into the vortex of one’s descent into any kind of private inferno, it’s still possible to count the odd blessing. Because my speech was still outstanding at that time, I had no problem whatsoever explaining to this kind lady in a succinct and very clear fashion the extent of my panic-stricken conundrum.
Half an hour later, after taking my medication while enjoying a cold drink and a lovely chat with T. covering the vagaries of life and such, journalism and travel, work/life pressures as well as the travails involved with having to cultivate that pesky concept of acceptance in the face of inevitably changing life circumstances, I was able to perform my chemical magic trick and dance gracefully back to my car to get my wallet. I shimmied back into the shop quick-smart to and pay for the drink and thank this kind soul for lending a hand and so much more.
One might well say it doesn’t take much to help a fellow stumbling pilgrim. And perhaps that’s true. However, a kind gesture – no matter how large or small – by someone who sincerely cares can truly make a world of difference.
It’s bound to become a long-treasured memory; that sense of security and safety slowly taking the place of panic and anxiety as I began to feel the L-Dopa kicking in and breathed myself back to the world of the living – all the while safely ensconced in an armchair hurriedly fetched from the back room by T. who quipped lovingly about her husband’s mild hoarding tendencies.
A few regular customers came in during that brief spell. One of them, T. said to me, had instantly offered to drive me home. Who cares? Well, plenty of people it turns out.
Next time more on caring, carers and the cared-for. For me it’s a startlingly fresh Brave New World of acceptance, reluctantly but inevitably bidding farewell to emotional creature comforts such as dignity, rectitude and independence.
But the other side of the ledger will also show some unexpected novelty items for those willing to discern them. I’ve seen the vaguest outlines of fair dinkum empathy, a pathway to patience, and even a smattering of Agape and resignation start to appear on the plus side, although this listicle of newly acquired transcendent assets is unlikely to keep up with the ongoing cascading fickle and haphazard additions my unwanted accountant intern Bloody Mr Parkinson’s keeps jotting down whenever I least expect it.
.. that funny, creaking but eminently comfortable chair in that gorgeous community hub/newsagent’s/oasis of humanity and kindness. You don’t need to worry though A.
I managed not to break it. It lives to linger yet another day in the backroom.
Returned home to a warm Wamberal embrace after yet some more rollercoaster days, with having to ditch my black beamer and following a temporary lifting of my spirits when, for a moment it seemed as though at long last I’d found a way forward in terms of tackling a persistent poisoned chalice related to some obscure nefarious side effects of the PD meds.
It does seem a bit of a fool’s errand trying to rein in my runaway libido and channel that surplus energy into some more acceptable or feasible approach or ways to manage this dubious silver YOPD lining.
For a split second, I believed I’d stumbled upon a method that could one day produce a worthwhile record of the inevitable premature decline of this tempestuous prowess.
Yet before long, sober every day life cares and troubles returned to the fore once again.
Probably for the best, I have no idea how to describe this conundrum in a reasonable manner that doesn’t put people off.
However, you can’t please all the sheilas all the time.
Believe me, I’ve tried.
Not really ..
Appointment later today with new Procto about upcoming colonoscopy.
Had quite a good day yesterday in terms of getting my point across and starting to see some real progress where my treatment is concerned – I will try to update the Diary of an Anti-Patient to provide a bit more detail.
But then the quality of medical treatment was never a concern. And I know full well, I don’t exactly fit the mould. And truth be told I do have a hand in the creating the near-catastrophe my life has seemed to become.
However, the thoughts running through my brain yesterday were not quite so lofty and magnanimous, as at 3.45pm after concluding my business for the day at Gosford Hospital, once more that old devil called Loki deployed another, by now quite familiar, logistical gremlin.
I was quite keen to get home, also because I had not been able to have (read:afford) breakfast yet and had been operating on a cup off coffee and Kinson.
This time, the bus driver genuinely offered some alternatives, ” You can also pay with a debit card or cash.”
Made it home around 7.30 knowing I would not be able to buy any dinner but lo and behold, just as I shuffled the last couple of metres to my doorstep, I saw some Pixie had left a very generous curry with all the trimmings.
It was just delivered, so still piping hot and delicious. There was no note or anything but I knew it must have been ordered from that excellent Saint Ingrid’s of Five Dock Hyper-Intuitive Delivery Service.
Not a bad result after a decidedly underwhelming start to the day.
Following an exhausting attempt at communication with, luckily just 50% of the mental health tag team visiting me this morning, I actually ended up a few hours later speaking to someone pleasant at CL Gosford and managed to get a few details amended.
Then made an appointment to try and get some new glasses. Now find myself at the station more than ready to head home. Yet in an hilarious twist to the day’s eventual flow and my mellow resignation to it all, I find my Opal card has a mere $1.83 left on it.
While I could in theory simply add some to the balance, my long-suffering Citibank app has checked out early for the weekend.
I don’t mind skipping lunch (“Lunch is for losers” as someone one said), but will be glad to be getting home. Let’s see if the Wamberal bus driver on duty today happens to be a mensch.
Will be asking around to borrow a car soon ..
This is actually quite impressive, all I need is to access my online bank account for one minute and move $20 to my checking account, after which I would be able to add a tenner to my Opal card and possibly use the rest for some lunch after all.
Not really whining but it’s a prime example of an increasingly common pattern. What could have ended up a nice-ish end to the day just has to become another stressful saga of near-Icelandic Epic proportions.
Not to worry, though, we’ll get there somehow ..
UPDATE: Lest anyone thinks I’m fast turning into some bah humbug miserable so-and-so, I did eventually make it back to my prized coastal refuge.
But what about lunch, I hear you ask? Well, I’m glad you asked..
Hardly had I reached a picnic table on the Esplanade, catching my breath for a sec, before two friendly tradies asked me if they could share the bench to have their lunch, which for both gents comprised of a pizza each.
“You’re sure you asked for medium?’ “Yeah, Bro ..” “Hmm .. looks more a like a small to me Bro.”
Then apropos of nothing, one of them turned to me saying, “Hey mate, would you like a slice?”
Moments later, I sat munching on two generous slices of tasty pizza, overlooking a cool and calm panorama – reminding once more of exactly why I love this strange and magnificent country so very much.
Just wish She didn’t have to play so bloody hard to get …
Just recently, on my way back from an event in San Jose, which included the option of experiencing a PD tremor San Andreas fault style, I skipped through the movies on the plane, the endless Big Bang Theory box sets, by the way not a patch on
and in the end even glanced at the doco section.
Of course, once again it was HBO to the rescue. The life of a most famous PD personality, Cassius Clay – or rather Muhammad Ali – as that’s the point of this gripping 2-part documentary.
What’s my name?Indeed. And while I’m not sure his choices were always dead on target – but then are yours? mine certainly sometimes don’t even register on any compass or GPS known to man – when you hear him explain with that intoxicating cheeky style how that first moniker had been the slave name, i.e. the name handed out to his forefathers once upon a time by the owner of his great-great grandad or what have you, you start to get an inkling as to why this proud, strong, talented man with a razor sharp mind – you can tell even in those very early media interviews that he knew exactly what he was doing – became deeply disenchanted very early in the piece.
It’s an often overlooked but very useful weapon; being underestimated ..
And it’s heartbreaking to hear him lament how, after winning Gold at the Olympics for HIS country he was convinced that now, surely, he would be allowed to sit in the non-segregated section of the little restaurant in his hometown, only to discover that after all that, Olympic Champion or not, he was still only a black man not deemed worthy to breathe in the same air as the WASP diners.
Yep, let’s try and judge him now for the odd mistake or error in judgment he may have made later on.
One place, however, where he couldn’t put a foot wrong was the boxing ring. Although I never really enjoy the final rounds of games when it all gets a bit too Punch and Judy for me, I do fondly remember his elegant stepping. That zooming around his poor lumpen opponents, just buzzing and hovering (I am aware of the phrase you’re thinking of now, dear reader. I just am not going to deploy it) until, at long last, he just needed to push the poor sod over for yet another stunning win.
And the link with PD? Well, since two of the trainers at the Chatswood Boxing School for PD People What Can’t Move Good in all honesty said I was a natural, I only enjoy his cocky dancing moves all the more..
Following a successful conference in Silicon Valley and some ultra-vexatious logistical hurdles while relocating to San Francisco, this morning I checked into a hotel in the Bay Area – mentally already able to sense the cool sheets that would soon be enveloping my aching bones.
After two previous attempts to get suitable accommodation, relieved to find an agreeable attitude on the part of the hotel reception staff, and moments away from the lift to that much anticipated rest and relaxation, it was interesting to suddenly notice the whole scene in front of me starting to shake and shudder. Could reality be this sarcastic?
The strangest sensation.
The girl who was in the process of checking me in grabbed hold of the desk in front of her (as everyone who’s ever worked in a customer-facing role, this defensive us-and-them dividing barrier so often serves as a last refuge, a piece of tangible flotsam to hang onto during one of those days, on Just another manic Monday
Slightly freaked-out, yet also a tad giggly she said, ‘Wow, just now some angry customers were getting into a fight in the line in front of reception and now this, ha, what a day!’
Meanwhile her clearly pregnant and somewhat regal-looking colleague had managed to fully maintain her composure throughout the tremor but did share how odd it had been to “feel the world around shake, and then also my baby in my belly.”
I gather this must happen quite often as none of the locals seemed overly worried, in fact they almost seemed a bit titillated as if proud to be able to impress the foreign rubes with a famous local anomaly.
It was strange though. It lasted only a few minutes but it was unmistakable and the very next moment the lifts were being used again without any concern.
At first, I thought a plane, train or coach (no, not an automobile) had passed too closely over, under or alongside the hotel premises. But the whole building did that fluid-flowing shaky thing that back in the 70s and/or 80s on some lame TV series was meant to denote a character’s flashback to an earlier scene in the story.
The sensation of seeing the real live picture in front of me – including the friendly hotel staff – swirling from left to right and back again was quite psychedelic. This, come to think of it, might explain a few things about the history and remarkably capricious cultural global impact of these parts ..
I suppose if you live here these minor and not-so minor shakes and shudders just become part of the mental landscape somehow.
And perhaps it’s a bit like people from abroad thinking the entire continent must be ablaze whenever we suffer particularly bad bushfires in one of the states that make up Australia. Or the way in which people in Florida or Far North Queensland somehow adapt to the regular hurricanes.
I remember once checking in on a close friend in that subtropical region in the Deep North during a news blitz about one of the most potentially damaging storms set to make landfall around where he lived.
After ensuring me he and his wife were fine he described the standard procedure when a big storm is expected to hit. “We get some candles and matches ready, pour ourselves a tall drink and sit back, waiting for the generator to kick in.”
Maybe it’s just that the only sensible approach to living life is to go with the flow in a big way, while obviously still trying to dot the i’s and cross the t’s as far as possible.
Knowing that while control is an illusion, it’s a helpful one serving – if nothing else – to help soothe my mind and keep it from entering anxiety action stations too often.
While my heart and soul know full well that ultimately I’m not in control by any means, I do need to trick my mind into believing it is – in order to make sure it keeps pulling the cart onwards and upwards.
Going with the flow then? Adopting a flexible outlook might make sense all-round. After all, you never know what or who could be waiting just around the corner, requiring you to think on your feet quicksmart whether you like it or not.
In a country where not that long ago but certainly pre-Turnbull days, it would have been quite feasible to find oneself downing a scooner in shorts and T-shirt (I won’t say singlet) while standing at the bar of a hotel (read pub) next to the Prime Minister or other such exalted presence, equally dressed in a supremely casual fashion, I’m often asked why I choose to wear a suit even though I am to all intents and purposes having some time off, meeting friends or whatnot.
Equally, it’s perfectly acceptable to attend Church dressed like that, which makes sense considering the temperatures we see here in Summer. But perhaps it’s me. I used to think, ‘I know I’m allowed to, I just don’t feel I want to wear shorts and a T-shirt to Church.’
Most people I know associate wearing trackies (read sweatpants) with truly being able to unwind, kick back and chill out on the sofa, binging on [enter comfort food/TV series of preference].
Perhaps it’s the old all or nothing syndrome that seems to be running through my life like a never-ending winding river that never ever ends. I feel comfortable wearing a suit or wearing nought whatsoever. Go figure?
But perhaps we’re meant to never ever stop learning? My new carer who is already proving to be a fantastic support, is keen to find out more about PD. I’m sure she won’t mind me using some recent examples of learning opportunities to tie in with some bugbears of mine around people’s approach to PD and other pesky peccadilloes.
One day, I will write a kick-arse lecture dealing with some of the tricky ins and outs of PD relating to awareness and perception. Bear with me, I’m going somewhere with this..
Although wholly sympathetic and non-judgemental (that most postmodern quasi- value embraced by anyone younger than 35, it seems), I admit to being slightly irritated whenever I see yet one more listicle along the lines of Ten things not to say to a PD sufferer.
I do understand this dynamic and during the first couple of years, I too felt vexed when someone said: “PD, really? But you look ok, you seem sort of alright?”
And I’ve had my share of rippers: “Well, at least you’ve got it while you’re young!” was my favourite. What? So, you mean I get to enjoy it for maybe 35 years, instead of just the last 7 or 10 years of my life?
Just last week, a DSP/Centrelink caseworker retorted after I started our appointment by telling her I’d had to privately engage a carer: “I wish I had one of those.”
I said: “I wish I didn’t have to have a carer and I wish I wasn’t obliged to pay for it myself..” Turns out, sometimes it’s not a good idea to start with a joke.
Yes, civilians – even close friends – often don’t realise what it took the PD pilgrim to get to that social get-together where, by all accounts, one made such a reassuring impression. Nor will they realise that in most cases, their PD acquaintance will be paying for it in a commensurate dose of delayed follow-up agony the next day.
But my aim these days is to no longer to sweat the small stuff and this includes ‘small stuff’ (which, of course, may not be small at all to others even though I’ve decided it will be for me) proffered by fellow PD pilgrims.
After all, if this baffling bastard of a bloody disease – for which no one knows a cause, for which there is no cure, and for which there is no remedy other than endless tweaks to one particular drug cooked up in the 50s with the sole aim of slowing down the inevitable decline – manages to confuse, dissemble, dumbfound at every turn even those of us living with it as well as those medical minds forever trying to make heads or tails of it, how on earth can we expect those who find themselves for whatever reason in any of our social catchment areas to understand even one iota of it?
Here lies the rub. This should be where we come in. You can’t change your fate. You’ve got it, now what will you do with the remainder of your membership of the human fraternity while still shuffling around on terra firma?
We don’t all have to aspire to be the most engaging awareness advocate; you can easily find ways to make civilians think twice before they again might say or do something unhelpful, if only for future reference.
I was having breakfast in my local cafe the other day. The delightful staff and perhaps even some of the many tradies frequenting the joint know by now that on any given day, I might show up at 5.30am in a semi-dishevelled state, pining for a long black and a B&E roll.
Or I might emerge a bit later in a suit, on my way to a meeting in the city.
The other day I was having a hard time along with a small latte when two ‘ladies who lunch’ saw my latest acquisition, a rather gorgeous if fanciful walking stick.
While I had my coffee, I heard them semi-giggling and wondering what on earth this thing was this guy had with him.
“I know, it’s a back scratcher!” cackled Blonde Highlights No. 1.
When this kind of thing happens, I always have to double-check my perception settings as I do have both an innate underlying tendency towards paranoia as well as the – thankfully less severe – paranoia package that comes as a free add-on with PD.
As my speech is currently not great, I decided not to launch a sarcastic put-down. After all, how were they to know that someone with a walking stick can somehow still use his hearing function?
Finishing the last few sips, I abruptly turned my gaze from the world outside the window to look at them. Straight into their eyes, yet not in a mean or aggressive manner.
Just in a, shall we say, unmistakably determined and communicative way. It seemed to do the trick.
Oh yes, I haven’t forgotten. My new carer and I were heading to an appointment I thought I’d made with a new specialist here in Paradise, sorry I mean the Central Coast, and while it was a bright sunny day I had brought along my trusted brolly, a prized bit of merch I picked up thanks to the good people of MS at a recent telco event in KL.
And of course my carer had no way of knowing I’d been having some trouble walking the previous days, a new and disturbing development I’m attributing to having had to change back to Kinson following the disastrous Madopar episode.
“Well Richard, seems you were expecting bad weather today?” she said a bit later while we were taking a lovely leisurely drive around the countryside, which indeed was basking in golden sunlight, framed by a clear-blue cloudless sky.
“It’s actually for walking,” I answered. “My version of a cool walking stick.”
There was no harm intended or caused. But it contained a few lessons both ways to benefit from going forward.
Don’t assume (too much) about PD if you’re not (yet) au fait. Most of us are happy to try and explain, inform, enlighten those who genuinely want to learn
Don’t assume a civilian’s comment is necessarily meant in a hurtful way (I’m forever having to remind myself of this; the old paranoia again)
In the end – I remember novelist Thomas Keneally once saying this in a completely different context – “we’re all just stumbling pilgrims, doing our best to keep picking ourselves up whenever we fall down.” *
FAO of all those nice people all over the world who can’t help staring at my incessant fumbling, stumbling, stammering and shaking. Believe it or not, there is still a sentient being in there somewhere.
#tellmesomethingidontknowalerert
This week, I decided to teach a beautiful and nurturing gentle flow ✨ 
One time, Sellars found he was infatuated with the stunning wife of a friend/colleague and rather than engage in any surreptitious shenanigans, opted simply to tell his friend who replied by saying he couldn’t fault the putative interloper’s taste.
Bit niche interest, if you ask me. Perhaps it was one of those ‘vivid dreams’ many PD pilgrims seem to have at some point during their PD careers.
My heart sank through the floor – probably all the way down, down down, deeper and down – when the answer to my admittedly quite unintelligible quandary proved to be a wholly superfluous overview of the various possible compulsive behaviour side-effects of most, if not all, PD drugs.
But having just frozen up without any real warning ahead of time, it was physically impossible to manipulate my arm, even to just slightly lift up my T-shirt and grab the small pillbox. And yet I could drive .. but drive where?
Interestingly, sometimes even while being hurled into the vortex of one’s descent into any kind of private inferno, it’s still possible to count the odd blessing. Because my speech was still outstanding at that time, I had no problem whatsoever explaining to this kind lady in a succinct and very clear fashion the extent of my panic-stricken conundrum.
Or I might emerge a bit later in a suit, on my way to a meeting in the city.
