Day six of a diaper free existence with a feeling of some pain relief in my left arm thanks to the TLC and healing skills of the outstanding staff at Wyoming Thai Massage.
Fell asleep shortly after carer Sir Jaime left me last night at 10pm.
Woke up at 5pm, not having wet the bed and actually not in pain or in a horribly frozen constellation of random crucified limbs strewn around higgeldy-piggeldy, which in my book counts as real progress.
… however the longing for my special One and Only increases day by day
… and is shooting arrows into an already committed heart Diana and/or Cupid fashion.
Wouldn’t that be nice? If this whole dazzling mad confused ball of brilliance and bliss and madness and mayhem was a safe haven to all and every one – with not a single fellow human being discounted, overlooked, dismissed.
Couldn’t resist the call of the waves, The Breakers, the lovely superb beach between Wamberal and Spoon Bay.. sadly I don’t think any other playa on Earth stands a chance of intoxicating me to the degree that this sandy and rocky ocean oasis manages to whenever i am stuck at home, ‘being safe.’
Met the usual horrified Stares and Cares (raise funds to roll out a number of robust all-weather seats at certain intervals?) but also met some sweet beautiful people as I shuffled and dithered my way up the steps at Spooney to refill my water bottle for the home trek.
A lovely family from Rab C. Nesbitt country, who like perhaps twenty or thirty other locals and visitors shot past me like a Merc to a Robin Reliant, but turned back and just asked me if i needed anything.
Actually, also had a wonderful swim for the first time this summer, and as I gingerly climbed back over the wall of the M.M Central Coast Branch Convent, i thought, ‘Yes but I never felt unsafe, even on my own at the Breakers past midnight while unable to put one foot in front of the other, however … TBC
23/12/20 – Very hard day as my lovely, amazing NDIS team and management don’t know the basics of YOPD and I am severely restricted by time again running out faster than my well-intentioned team, my own body and mental resilience and the long-suffering patience of so many of my wonderfully supportive neighbours are likely to be able to absorb.
Please don’t get me wrong, today of course there was also much, very much to be thankful for. But a day that starts off with me showering hyper-carefully due to exhaustion for 2,5 hours on my own will have a certain inevitable flavour all of its own, I’m afraid.
Also i am not allowed to use common sense tried and tested means to fix this in a jiffy (which i could have done months ago).
Instead, every single shift has to start with me explaining verbally one on one what events in my view have taken place since the last time each individual carer saw me, what my plans are and i often hear from them what they have been instructed to do, which sometimes leads to me having to rearrange my plans at the last moment without any heads-up.
Again, this is no one’s fault and I still have trouble convincing lots of people, including some old friends and family members, that i stopped playing the blame game years ago. This arvo, I fell onto the cold tiles in my unit as i tried to get to the throne but got caught short and puked on the carpet.
Dysphagia ( < spoiler alert > this is how i will die LOL ), combined with severe fatigue and anxiety and I am noticing horrendous dyskinesia; a major new worry that I can’t share with anyone as I just don’t have the time or energy to bring three or four people up to speed verbally one by one.
I have now fallen so many times, tomorrow i am going nowhere at all.
My left elbow and hip are really sore – it had to the the left side!
I will ask the carer tomorrow to not do any laundry or at least not to put it to air in the ‘Richo-Reiki quiet reflection room’, even if the Flood keeps pouring forth as it may well do .. Lord knows.
So when my remedial massage therapist rocks up at 1pm, she can set up right away as she must be flat out too in these dark mid-Winter days before the Light of the World is revealed to us all once more.
++ Que sera, sera – No stress, no worries – She’ll be right ++
weight: 70.1kg (down i think, not sure) movement: Ymovicol taken: Nmood: anxious not able to unwindH-S: manageable for now
.. OR HOW I DREAMT MY SPEECH IN THE REAL WORLD WHERE THE ‘NORMALS’ AND WELL-MEANING AS WELL AS THE MEANEY ‘CIVILIANS’ RULE THE ROOST, PROVED TO BE SO CRYSTAL CLEAR AND BOOMING IT HAD NO ISSUE AT ALL REACHING FROM WHERE I WAS STANDING, JUST IN FRONT OF THE CAVERN ALL THE WAY PAST THE SOUND OF A RUNNING MOTOR BIKE AND PAST THE FOAM AND WHAT-HAVE-YOU OF A BIKE HELMET TO THE EARS OF A MIRAGE I MUST HAVE CONJURED UP LAST NIGHT TO DELIVER SOME FOOD FROM A LOVELY ITALIAN PLACE I’D REMEMBERED FROM YONKS AGO ..
Why the hell should I stay at home silent as a mouse in fear of upsetting anyone with my antics? On such an amazing evening?
You tell me it’s not weird how every single neighbour shuts up shop for the day at 7pm with not a sound of a tv or music or even voices until the next morning?
And I am the weirdo?
At any rate, fortune favours the brave as I just discovered this little pocket of a park just before I started looking too weird with my shoes for which I still need to find laces..
.. giving me a gorgeous unexpected view of the Skillion, looking more like a lost South Sea island Shangri-la..
… just slipped back quietly to find, when i just switched on the outside lights – signifying a potential ‘delivery’ of some kind is likely pending at the Wolf’s Lair – the whole area suddenly awoke from its bizarre, creepy funereal dead slumber, with people scurrying and seemingly tripping over one another to get away..
I hope someone out there ‘gets’ what I am facing here, because in all good faith I’ll be fornicated if I am going to explain it any more, to anyone, anywhere..
.. meanwhile, i am looking forward to my delivery …
Just couldn’t bear the idea of not being able to share my good vibes and positive outlook following my meeting with my NDIS Support Coordinator, so ended up ‘celebrating’ by trying to relax while scoffing down a can ‘o coke, a Portuguese pastry while drinking in the gorgeous balmy sea air, positioned in ROZ Corner (Good God, give it a rest!).
Well, just a crooked old, rather comfy chair I’d foraged earlier in the day along the beach car park.
But of course, it’s ok during the day when you can tell people, it’s because you get tired and there just isn’t anywhere to sit down for a sec in that front part underneath the new and stunning deck of the Ocean View Cafe overhead (caught a first view of the bright lights of Terrigal, lovely atmosphere up there and no mistake) ..
But somehow, it just doesn’t look as ‘normal’ anymore when the bright lights reveal a rather less than relaxed Muggins who is now, once again, knackered and hungry…
But I you hear you say, ‘Never mind all that melodrama, Tosser of Coz, did you say good and positive stuff in the workings? Perhaps lead with that in future, ok sport?’
Well, yes good efforts afoot to get Muggins more suitably housed and ready to embrace that elusive life of sobriety and secluded introspection [seems legit/what could possibly go wrong?].
Seriously, i do look forward to a change of pace and yes, I will always want to write, reach out, communicate …
But knowing I may be able to do so with none of the ever-so-slightly cumbersome and copious levels of stress and anguish, that have marked the last seven years – for me, and not just for me as an individual man with, only currently, very few personal ties either (..) – since that morning in Glebe at the Woolcott Institute, could and let’s face it, should make all the difference.
I hope to see a few very important people in the run-up to Christmas in Sydney but i am coming round to the idea that it might actually be quite nice not to have rush around like a mad fruit bat on Sifrolic Acid but perhaps some of my amazing carers are allowed to drop me off and some others could collect me a day or two later from whichever of my favourite hotels could easily see me make some good use of my erstwhile QFF status? Who knows? [ i think this may have been confirmed to me*]
Perhaps I should be starting to learn how to go about ‘wanting to’ shift gear, change focus and think along those lines?
Since my new neck of the woods (and i do want a fresh, quiet and private new start if it’s on the cards – very good people are still working very hard for his ungrateful, spiteful paranoid nightmare of a Muggins – might possibly see me located a little bit closer perhaps to one or two new friends/acquaintances, I wonder if my yellow OPAL card could also help me to establish social links, even just by making it easier to pay visits to mates new and old for that matter?
And, all good things come to those who … ah well.
I think it might actually lso make sense to ask my stellar specialist for a new referral to a specific psychiatrist he once recommended to me up North..
.. in the New Year.
Merry Christmas and a Blessed, Prosperous and Healthy 2021 to all and sundry (especially the sundry)
Quite strange feeling like i have to live like this.
Am trying to prepare for whatever unexpected shenanigans the morning might bring.
I hope there’ll be a roster in my inbox for starters, that would be quite nice.
Wish i had some money-laundried filthy lucre for another massage but i might be able to pay for a longer session, including the xxx oil (!) after next Monday.
And, after all, I used to have weekly massages on a Monday night a long long time ago and that regular health regime agreed with me, so i might as well aim to reinstall that.. Deo Volente.
However, I hope to be able to mend a few bridges but it all depends on the response to the horrible development involving L.J. Hooker’s devastating bombshell on Wednesday.
Around 10.30am, my hardworking, dedicated (and I mean this BTW) NDIS Support Organiser will materialise in my paranoid coastal goldfish bowl, so it will be fascinating to hear directly how on Earth the negotiations with the real estate agent/landlord could possibly have resulted in this fresh avalanche of unnecessary stress.
Now, I know what you are thinking, me hearties,
‘Oi! Wizardy Weirdo or whatevva .. The Blizzard of Dross? You’d better make damn sure you record that convo!!’
Incredible though, once people realise i can handle all kinds of crapola, as long as i am not left in the dark, the lovely super-charming Richo appears and all is well again.
Had a lovely service to kick off the day followed by some clarifying recalibration with my NDIS Guru, after which we made some good stuff happen – comms and collaboration – and we were besties once more as I walked her back up to her car.
Me: “You’re lovely, so funny..”
NDIS Guru: “I think you’re the funnier one!”
Fancy an oldie but a goodie? Here’s one I prepared earlier, while locked up voluntarily at RNSH Mental Inpatients..
A sad day as it took me raising my voice again and being downright rude in order simply to find out what I can expect to happen to me/for me/with me over the holiday season.
Seriously, I get that this company hasn’t had the undiluted pleasure of knowing a little bit more about what makes Muggins tick, but honestly..
There was some promising news and some, understandably realistic sobering news. But why not include me in any of this and avoid forcing me to pipe up again?
I can surmise, divine and augur only so much and, let’s face it, that way of me trying to get some info just to keep me wanting to keep going, just isn’t as reliable as simply keeping me updated re my life, liberty and lifestyle feasibility or indeed, the lack thereof. I’m a big boy and bad news is still more useful to me than no news whatsoever for days, sometimes weeks on end ..
This has now all been sorted and i find myself much more reassured. There is actually quite a bit of light seeping out to greet me, at the end of this Diagnosis-NDIS et al. Tunnnel.
Also, my once and now again kind and wise GP impressed me all over again and her calm demeanour soothed the savage Muggins breast, which was a nice omen of states of mind to come? I hope.
MInd you, her notes hailed from the darkest Madopar days so that was a shock to the system hearing her say that my Neuro, last week, had wanted me to change to Mad Opa again LOL.
SOME TENTATIVE, YET SERIOUS PLANS: OFFERING REIKI-RICHO MASSAGES/RAISING FUNDS TO GET EXTRA PRIVATE CARERS TO SEE ME THROUGH THE ‘GOOD CHEER’ SEASON
RECONNECT WITH KINCUMBER HOLY CROSS CHURCH AND JOHN MAIN BENEDICTINE CHRISTIAN MEDITATION GROUP AT (HOLY NAME OF MARY CHURCH, HUNTERS HILL/EVERYONE INVITED FOR A SPECIAL ‘LOW KEY, NOT CRAZY AT ALL’ PRE-CHRISTMAS LUNCH AT THE PLAZA IN FRONT OF THE WOLF’S LAIR.
FUNDS RAISED WILL GO TOWARDS ROZ AND ALL OR SOME OF THE BIG(HEADED) PLANS I HAD.
SOME OF ANY CONTRIBUTIONS MAY BE USED – AT SOME POINT IN THE FUTURE – TO PURCHASE A BRAND NEW, VERY OLD, VERY FAST AND VERY CHEAP BLACK BMW/AUDI WITH TINTED WINDOWS.
MANY MORE PLANS BREWING .. OBVIOUSLY… WHY DO YOU GUYS THINK I AM FIGHTING LIKE A LOVELY CUDDLY SUGAR GLIDER TO STAY FREE?
MEANWHILE, The Richard of Oz REMAINS FREE OF CHARGE TO ALL AND SUNDRY 24/7, RAIN OR SHINE (WELL, MAYBE NOT SHINE ..)
** G’Day me hearties, yes it’s the new and anti-depressant improved Muggins at your cervix.
Yes it has come to this, agreeing to ‘relax’ the chemical way in order to send Psychiatrist X. (who was only there because I had arranged his home visit myself, remember?) away thinking I might just about still make it on my own here, rattling around my vast subterranean inverted pleisure dome like some latter day Howard Hughes..
So, in a while someone will turn up with five more anti-depressants for me, this visit is supposed to coincide with carer CA.2 being here to do the talking for me, if need be ..
Apologies meanwhile to those who still don’t ‘get it’ – I am again running out of time now, need to get ready for this lovely new day and decide on whether or not to choose the chemical zombified way of finding relaxation or whether to keep on the natural path, e.g. remedial massage.
Probably won’t even have time to do my weight stats et cetera.
IT is a joy to be dealing with peeps who understand the value of a man’s word.
I said it before, ‘God, what a amazing place to live, or to have lived!’
But I fear that once again, I may have been too obscure or cryptic, and that it won’t matter much in the end anyway. It’s the unwelcome intrusion of those two bugbears of mine, Irony and Paradox..
It just happens that some of the kindest and most caring people around me just refuse to believe I am deadly serious when i am stammering my way through a panic-stricken nerve session, asking – begging them: “Please read at least one story, PLEASE!?”
And I’m not sure why, if someone you care for/about is pleading with you with such emphasis, he or she might have a good reason for wanting you to read ‘at least one  story?’
Perhaps they think it’s a nice or horrible website where this weirdo can ‘let it all out or something’..
Well, if that’s all i remain alive for, a kind of ‘Dear Diary, you never guessed what happened in gym class today’ kind of thing, I wouldn’t need to publish or promote it.
I don’t (seem to) have friends
or family anywhere within reasonable reach
or more than $8,86 in my bank account
or any more cars left to flog in order to survive
But i can still string a few words together – that’s my ONLY asset.
Unfortunately, the 5 minute full-disclosure disturbance necessary to ensure I wouldn’t have to deal with an ambulance-type scenario three nights in a row – did entail me having to ‘gently remind’ the entire surrounding area there would be hell to pay if anyone thought of calling an ambulance (…)
This, mind you, was after I had managed to make my way up the rainswept slip & slide drive during the thunderstorm, moments after a giant lightning strike had hit – and I assumed the area would be in black-out soon.
Now, where I come from ( Camperdown LOL ), we’d always make sure those around us were safe and sound first before doing anything else.
I quickly checked to see if the lovely girls next door were ok, didn’t see any sign of life upstairs but then really needed someone to call me a taxi.
Stood trying to get a cab, Uber or anyone at all to stop for me by the roadside for half an hour, pacing up and down, wielding my stick like some kind of mad Stormbringer (it is my fave weather, granted) but no joy ..
Oh well, am really trying to have a restful morning but I can sense some of the decent and proper townsfolk reaching for their pitchforks again.
But what do I gain by lashing 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 yet 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 personal and somewhat peculiar deck of cards seems so often to produce.
I should probably apply to the proper authorities to get my forehead stamped with a health warning of some kind as well as a strict expiry date ..
Email to my truly outstanding and dedicated NDIS Support Coordinator:
Can you please tell me what is happening tomorrow in terms of rosters and carer CA.2 et cetera?
Am back home resting and have made my apologies to K. 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 CA.1 had gone. I then checked my email (phone still not working) and found no update or anything nothing from you or RO., 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 some relief or a even just a bit of a break from the current unbearable pressure ..
Just something, somewhere, someone..
But this why i always tell ne carers not o rush me when leaving the house: Of course, I 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 relative safety of my 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 X. The other day I received a $500 bill for my last ambulance ride to Gosford Hospital Emergency Ward, probably one with Ambo 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..
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?
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*
* 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.
Had a few good days in a row, well .. sort of. Might catch you all up on that laters..
First things first, what shade of true blue azure bliss will this brand new morning sky reveal to us today, I wonder? Also on my murky mind is a most unsettling recent trend of old and new friends transforming into mates that once were and those who could have been ..
The natural communicator in me has of course repeatedly pressed the Internal Paranoia Department – making inquiries as to whether Muggins might have imagined certain nuances, facets or flardettes of slights or inferences perceived in some of those sad interchanges…
But second things presently, as i do have to put my skates on and apply the finishing touches to a crucial email to the property manager.
And I yet 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 fast following suit. #justrelax!alertlol
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. And 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 is still saved on my trusted battle-scarred Pixel 2 – 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, perish the thought.
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.
Thank goodness for Armando Iannucci!
Another hard day dominated by insecurity within and without.. at least I can think I can see our stunning azure Sydney skies returning.
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.
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.”
– Da kann man stark bleiben, aber fuer wen?
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 ..”
As the world turns on its axes, with most civilians 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’s fair in Agape and ..
(Can’t quite remember how that saying 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 head around the nitty gritty of all things NDIS. Five-and-a-half 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 those 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 so incredibly strong, capable and caring.
And smiling that dazzling sunrise smile at me, simply superb in every single 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.
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.
No one ever said there’s no humour, even deep within The Abyss.
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.
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 3PM 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; if you’re not into the levity thing.
So to be fair, it was never going to be a walk in the park …
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 from my coastal dystopian chokehold in search of safety if not sanctuary had .. been .. you’ve guessed it ..
Water under the bridge and plenty of it.
I think this was also the night I chose to re-watch Awakenings ..
Came home to a tidy cozy nook thanks to my amazing Butterfly Princess. Sufficient unto the day the evil thereof . Tonight is for rest, am just thankful to live and fight another day.
*) Clueless only in so far as proving near-lethal to Muggins who, it has to be said, can be a bit tricky to fathom even on a good day.
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.
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.
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.