Cyborgia - Genesis

This is the story of how I came to have my tube, to celebrate its anniversary.

Very very shortly, it will be a year since I got my PEG tube.  As with so many things in life, it seems forever and only yesterday, all at once.  I really didn't see it coming, but that's just because I didn't want to.

I can't really recall how long ago it was that the idea of a PEG tube was first put to me, by one of the specialists I was seeing at the time, but it was a few years roughly.  Let's call him Dr Peter.  We were discussing my weight loss, which at that point in time was nowhere near the levels it ultimately reached, but more specifically my increasing difficulty with the mechanics of eating.  He mentioned that "down the track" if eating became more problematic that a PEG tube could always be an option.  I had to ask him exactly what such a thing as a PEG tube might be, and he explained it simply for me.  My mindset at this time about my situation still had a great edge of stubbornness to it; I was still working and intended to continue, and I fully intended that at some point in the very near future I would find 'the key' to unlock this mad disease progression and start to heal; so I more or less dismissed such future thinking out of hand.  Yes, fear, of course.

I didn't see Dr Peter all that often.  Because my condition is pretty rare and symptomatologically (is that even a word?) crosses into so many areas, I don't really have a 'home specialty' to fit into.  So my management was seen to by a sort of 'general specialist' that they call a Consulting Physician, which in my case was Dr Peter.  Still would be if I hadn't moved towns.  He looked a little like a bastard love child of George Costanza and Professor Julius Sumner Miller but with more hair than both put together.  I liked him because he was honest, conscientious, and weird.  He liked to do bizarre experiments with Tesla coils in his backyard for fun and had collected all the pharmaceutical company promotional pens he'd received as gifts from sales reps, arranging them incredibly artistically in a frame box and wiring them up with a light display in his waiting room. I always wondered what the reps thought of that.

What the infrequency of my visits brought was for him a very clear view of my deterioration.  6 or 9 months can show up a lot of change that you don't necessarily detect so easily if you see someone every four weeks or more.  We shall now cut to the chase, as it were.

I was spending 4 or 5 hours a day eating just to try and maintain weight.  I had been weighing myself at my local doctor's office, at the dietitian's, here and there, and just allowing my mind to fuzz about how scales were a bit different anyway if there was a lower reading than my last, but nonetheless celebrating any apparent gain, despite what scales I'd used.  My diet was becoming more and more restricted as there were so many sorts of textures I now could not seem to eat (or drink) safely without bits making their way into my airways.  So I was constantly making hideous choking and coughing noises which tormented my wife and probably also the neighbours, always feeling hungry, and at great risk of aspiration pneumonia.  I had ceased work because I really had to, and was being Retired Due To Total And Permanent Disability, as the Australian Public Service calls it.  Every single other symptom was undeniably worse, and there were some new ones now too.

At a much later meeting with Dr Peter (a year and a bit ago now) he paused for some time after our little initial chat (also something increasingly hard for me to do; chat I mean, not pause) and then said "So, you've lost about 10 kilograms in 14 months." And paused again.  Just like both George Costanza and Julius Sumner Miller, he always seemed to have a hint of a smile playing about his features, even in very serious moments.  "So I think it's time we looked at putting in a PEG tube, like we talked about"  

Long pause.

Me, bravely: "I do remember you mentioning it, but...."

Bravery evaporates, faux stoicism cuts in momentarily, falters, then returns; so I can almost carry off relaxedly saying "...but that just seems so...so...palliative."

For indeed, my world had crumbled at the lightest touch of just a few words - kindly, but well-considered words - that meant exactly the opposite of harm.  Yet I did not feel loved, right then.

Dr Peter spoke words about how so many people lived for a very long time with such tubes, how commonplace they were these days, and so on.  He said it was actually a pretty minor procedure to emplace. He was really just bringing me back from emotional overload land by talking about the practicalities in terms of others, not me, while giving my poor scared mind some little life rafts to cling on to.  Clever man, really.  I was still resisting.

I spoke some more about the specially formulated hi-calorie instant pudding stuff my dietitian had put me on, and how maybe if I could manage some more of that each day......how it might be good to wait and see pending.....I don't even remember now the counter arguments I was lamely throwing up - pun intended.  There was another of those pauses about now.  Then Dr Peter gave me a very powerful pair of overlapping mental images:

"If you drew on a graph your weight loss over the last 18 months or so, and projected that line into the future, how long would it be until you got to, say, 45 kilos?  Because that's you basically bed-bound."

Oh.  Quite.  Right then.

Dr Peter said he'd send a note to a surgeon to arrange a placement, and that the surgeon could explain all about the mechanics of it.  I left his office that day upset, but rather more intensely alive and 'in' myself than I had in quite some while.  I went home, told my wife, and we cried.  This changed things, profoundly.

Our life at this time was pretty full-on anyway.  Trying to tie up the final details of the official retirement, which brought with it a whole other huge set of challenges and opportunities, and intending to buy a house.  Our finances were very limited indeed, and up until now we were still going along as if I would not get appreciably worse (at worst) and as if I would soon find some way to get better.  Genuine and complete acceptance of the possibility that the reverse may turn out to be the case was still a fine line away at this time, for me anyway.  We'd been looking for hopefully a larger parcel of land to grow a big productive garden on, or even maybe a few acres to have a horse at home too, so we were looking way out in the sticks to suit our budget.  Well now with a sudden seeming hyper-medicalisation of our future, and freshly rekindled horror memories of my last few times in hospital when stuff was seriously bad, scary and painful - plus a whole new layer of depth on dealing with the ever-increasing likelihood of the imminence (and probable circumstances) of my demise, we decided that we would be better to prioritise a more reasonable closeness to the city with its specialists and a good local hospital.  There were some pressures (I'll spare you the details) to move fairly fast with the house thing too and I decided that we'd continue to move on that front while the whole tube adventure begun.  Another little lingering shadow over my imaginings of my tube placement was the recent experience of a close friend going into hospital and undergoing all sorts of unforeseen drama and suffering, which we shared in a lot of ways, and which did cast just a small negative of doubt about hospitals, anaesthesia, doctors....all that.

A date was set.  We found a house.  It worked out that I'd be moving house 8 or 10 days after the tube went in.  Crazy?  I don't know.  From decision to surgery, the whole thing took less than 2 months.

On the appointed day Meeta drove me down to the hospital, and I began my wait.  It's the weirdest feeling, sitting in a tiny waiting room with a couple of other people, all the 'day surgery' patients, waiting to be called in and gowned up.  Eventually I'm processed, and now wait in a different way, lying in a gurney in a rank of others similarly pensive.  No-one is talking.  I recall my last time here perhaps almost two years before waiting for an endoscopy and so forth, when I discovered that people under sedation can sometimes be quite vocal, even if they don't remember it later.  It became quickly apparent that the dainty and demure blonde teenage girl before me was experiencing a colonoscopy under sedation, as I could hear her roaring at the staff "GET that F*#KING thing OUT of my F*#KING arse you F*#CKING C*#TS !!!" and so on and so forth.  The doctors were being most schoolteacherish with her, telling her to behave and co-operate and using her name a lot, rather than trying to pacify, mollify, or reason with her.  Just as well I'll be under general, I'm thinking.

But no.

Apparently my time and monetary investment in having a consultation with the surgeon's favoured anaesthetist was all to no end, the surgeon briskly tells me as he flies in, he's decided to do it under sedation only, so he can wake me up and get me to assist with getting the scope and things down my oesophagous if he needs to.  Which is exactly what happened, as it happens.  I remember congratulating the surgeon on getting a cannula into my vein first go (my skin makes it tricky) and the next thing I recall is him speaking very loudly at me to open my mouth as far as it would go (not far in my case), and giving me instructions for arching my neck, swallowing, etc....and then nothing.

I don't remember the recovery ward part.  As far as recollection goes it was waking up on the ward (they wanted to keep me a day or two) and before even opening my eyes, seeking out my stomach with my hands....and there it was!  It hurt a bit - it was pointed out that it was basically a stab wound after all - but not terribly.  I did have trouble with the first couple of feeds, in that I had massive stomach cramps and spasms (this did hurt a lot) but during that time a funny thing happened.

My eyes don't close properly, so at night I fill them up with a special lanolin and paraffin ointment to protect them while I'm asleep, and I use special eyedrops all the time during the day.  Of course I'd been sedated and recovering for a few hours now, so my eyes were all blurry and sore.  I was drifting in and out of sleep and going through spells of amazing pain.  You know those curtains that go around hospital beds? With the aluminium track that curves around the foot of the bed?  Up there, directly where my gaze fell on the curtain track, something was written, faintly.  I couldn't quite make it out and at first assumed it was just a maker's mark or somesuch.  As I became more alert and aware, and my eyes improved, I could see that it was four letters, capitals - HDPE.  High Density PolyEthylene?  What?  I don't get it, and it's not printed, even though it's neat, someone's got up there with a pencil or something and written HDPE....who the?  What the?  I don't get it.....and actually, the writing looks familiar.

You remember I mentioned my friend who'd been in hospital not long previously?  He died once or twice during his operation, and had all manner of complications with what was initially supposed to be pretty routine surgery.  In and out of intensive care for a bit.  Also an artist and writer, with very recognisable and consistent penmanship and suddenly it all delightfully fell into place.  He'd been in this bed, in fact I'd visited him in this very spot, and as he got better he'd climbed up there and written "HOPE". The delight lasted maybe 2 seconds, then...

I was instantly furious.  Hope was what had gotten me such incredible pain and repetitive disappointment, led me to despair, tied me up in knots of wanting, supported me in the delusion that I was somehow going to find a way to be cured.....truly, I was livid, but at myself, not anyone else.  And I had one of those little special Moments Of Perfect Clarity.  It was not hope that was the issue at all, it was specific hopes.  Hoping for particular outcomes, like getting better.  Like not being killed by this thing.  Like putting on weight - all sorts of little hopes.  I remembered, re-realised, if you like, that I'm not the one with the plan here.  My thoughts about what's best and good and right for me are dodgy at best, filtered through all the crap of 'knowledge', expectation, moral certainty and simple dumb habit of mind that fills your life from the moment you are born (or even before), and at that moment I had that *other* type of knowing that seems to come from the deepest and most Truthful place.  I knew about faith.  Not faith in Christ or faith in love or faith in good's triumph over evil or any of that wordy preconditioned judgy garbola of the mind; just faith.  Faith that things shall be as they need to be, and that it's not only fine for me to have no clue as to what I might need to experience, its probably a blessing.  So then, I felt grateful.  And sent my friend a text message.

A day or so later I went home.

With a whole new tube.

The rest, as they say, is.

Over the course of this blog adventure so far you can see a lot of the ways I've changed I suppose, and the tube moment was a really pivotal one.  It helped crash me through that final acceptance barrier, and I suspect that as a result of this alone, it's been the most healing event in my life for I don't know how long.  I loved my tube for a while - I suppose I still do in a way - but now it's been almost a year it just seems like such a part of me as to be almost organic some days.  Early on it was such a blessed relief from the eating struggle, even if the whole digestive thing took another maybe 8 or 9 months to really get to a 'normal' state of affairs and there was much rending of hair and frustration along the way.

I guess what I'm saying is that I'm comfortable with it at this time.  So happy almost anniversary me, (it'll be August 20th, btw), being a cyborg is great.

Things I want right now #3

Back when I was an eating person, in truth I did indeed love food, but you'd never have called me a gourmand.  As eating became more difficult, so food became more about necessity and less about enjoyment.  Prior to that, I'd try out new recipes (usually just made up stuff from my head and whatever I could find in the house) and enjoy new sensations - but never obsessed or craved or even strongly desired any particular thing.  If something new came along, that was great.  I'd watch something like Iron Chef and imagine what some of the dishes would be like, but was never busting to get into the kitchen and replicate it.

You know how they say that people who lose a sense tend to experience a heightening of other senses as some sort of compensatory thing? Like the blinded developing really sensitive and directional hearing; stuff of that sort. Well I've developed compensatory imagination.  A couple of years ago, sure, I could imagine what a new dish might taste like, but now.....sometimes it's genuinely absorbing.  Full aromatics, mouth feel, even the feel in my hands as I pick something up....the roll of the tongue and teeth, the swallow, and the aftertaste too.  Of course I completely believe I'm 100% accurate in my imaginings, but then I would, wouldn't I?  No possibility of comparison with reality itself.

Which brings me to today's must-have moment, a new dish never tried before:

Open rye bread sandwiches with cheese (I'm thinking something Northern European like Jarlsberg), caviar, and boiled egg.  Seriously, I'm full right now from my last feed but I could go about three of them without hesitation.  After the first I'd experiment with just the merest touch of white pepper, very finely ground.

It's come from a book set in Sweden that I'm reading right now, where this is something a character eats.  No big deal, just a simple description of some food.  But as I read it, I got it, the combination sang to me; the slightly piquant tartness of the rye with it's subtle tang and strongly chewy moistness layered under the nutty full-flavoured cheese and I'd never thought of caviar with cheese, but it just works so well - as long as you remember the boiled chicken egg.  It ties the other ingredients into a roundedness and harmony of genius.  I bet lots of people would put something like mayonnaise with this, but I think that would ruin it.

So if anyone wants to have a go at this one for me (my other half's not ever going anywhere near caviar or boiled egg for that matter) do let me know if you enjoyed it.

You know what?  Writing it up gets me to that point of being satisfied too, so thanks for the opportunity.
.

OK, I give up.

I know, yes, I know, I did it to myself.  Two men walk into a bar.  You'd have thought one of them would have seen it.  I have done this over and over again, and I'll probably do it some more in the future too, until I properly get the hang of this compassion and caring with no attachment to outcomes thing.

What on earth am I talking about?

Politics.

For those of you who are unaware, there is an election afoot in Australia following the pseudo-coup where the ruling party ousted its own leader for fear that they could not win an election with him still in place.  It was an awful moment, but I did my best to remain detached.

A new leader was installed thusly, the former deputy PM, about whom over the term of government I had previously expressed some measure of foreboding and wariness.  Not because she is ambitious - which she most clearly is - but because I suspected her to be largely incompetent outside of her abilities as a party politician.  Not national leadership material, in other words.  Still, I tried to remain detached.

She began by making a few decent noises.  And she kept making noises, and soon the noise was awful.  It was matched in din and dissonance by the verbiage from the main opposition leader and his team, about whom I have at least as grave misgivings.  The noises I was hearing were the sounds of fearmongering, of exclusion, of naked pandering to all the worst sides of human and peculiarly Australian nature, and worse still were the sounds I did not hear; or rather I heard them, but parodied and abused.  I failed in my detachment.

The soft music of compassion I heard stuffed into a box and labelled with conditions and prerequisites; the harmony of inclusiveness I heard out of phase as the orchestra on either side tried ever harder to define the note of the lowest common denominator fear - not the joy of what we are and can abide, but of what we think we are not, those emblems of otherwise delightful diversity and difference which some believe we do not wish to have as part of our reality at all.  All the humanity subsumed beneath a crescendoing wave of confected contempt.  The warm phrasing of sunlight, energy, and endlessly renewing nature was alluded to by either side as something they might play a little later, perhaps at a small concert for those 'few' who cared for such a thing, but not now, not at least until some other big band makes it popular first (forgetting that much of the world already plays these tunes far better and louder than we) or until some other time when there isn't something far more important going on than life itself.  Of peace, the only note that rang, clear as a bugle call, was at the funeral of a dead soldier, home at last.

In the corner, near the door to another reality is a small band, and a small handful of solo players, unplugged.  The small band offered its songsheets to everyone, and cared not for copyright or glory, for it saw that its songs hung together quite nicely, and knew that when they were heard without the Noise, people mostly knew the songs in their hearts already, and would hum along.  They are happy to collaborate.  Asked to sit at the table when the nation sat to watch the two big orchestra leaders argue their scores at one another.  But alas, no.  This would upset the gruesome balance of The Game Of Keepings Off.

What is my crime?  Why am I thus punished and crestfallen?  Why must I now simply surrender?

It all started with me caring.  Not a bad thing in and of itself at all, no, not at all.  But when I let myself start thinking about how it might be for the people and the country and the planet I share with, what might be good to have happen.......and thinking thusly that there must be work to be done in sharing the ideas and tunes like those of the little band on the edge of another reality with others, that they might be reminded of them and turn away from the noisesome, consuming and distracting tintinnabulation of the Big Groups.....well, that's the way of struggle and disappointment, isn't it?

Enough that the music is there, and shall find its place as it is required to do in The Scheme Of Things, a scheme which not I, nor any mortal truly knows; but singing for myself only - a scheme which I feel again coursing through me, the very minute I give up trying to know how best I might make a difference.

And thus, paradoxically, I shall surely make a far greater difference in a far better way than if I thought I really knew what to do.  I guess you call that faith.

So now I shall merely do my best to simply observe, as if at a parade, the bands as they pass by towards the election date, and hum along to myself whatever true and pleasing tune most catches my strings of contentment and honesty, as it comes to me.

So yes, I give up.

To satisfy my protesting mind I have simply readjusted my perspective - whichever of these two fine humans we elect to lead us for the next while, if it all turns to shit, will simply be The Nightmare We Had To Have, so we have the opportunity to properly awaken. 

Hope springs eternal, but for what I know exactly not, for in believing one knows, that way lies despair.  Hope and faith are enough in themselves.

.

Revisiting an old drug habit......recommended!

A good friend of mine, who lives in the Medium-Sized City these days (so I don't see him much) had landed a very tasty artistic gig in SE Asia, and shall be departing the country shortly for I don't know how long.  I'd vaguely planned to go down to the Medium Smoke and see him next week, but yesterday morning my dreams and a strong intuition just directed me to wake up and go down immediately.  So I did.

I met HTB probably 15 years ago roughly, and we formed really an indescribable compatriotism around aesthetics, lifestyle choices, and similar addictive substance preferences.  I've already mentioned way back that I used to be an involved denizen of Fremantle, which is where we met and on many days sat together, with the passing parade and a movable rogue's gallery of allsorts for company, doing drugs together (EDIT: this last may not mean what you just assumed it did, you scallywag reader you....read on...).  So it was most pleasant to revisit the old haunt and once again ritually partake of the joys we had not shared for many a year.  Here's the aftermath:

Yes, I had a coffee. It was fabulous.

(EDIT: See, coffee is a drug; as is nicotine for yea, verily, I did once smoke up a storm also.  I suppose these clarifications are a pseudo-necessary exercise in the world some of us still inhabit, eh?  Can't be too careful and all that?  Sigh.)  This is the remains of a 'small macchiato' at my Fremantle cafe of choice, Gino's.  I see they have changed the glasses since last I was there, passing through in early 2008.  Looked and smelled exactly the same though.  The ritual of imbibing with HTB was almost the same as it ever was - minus the cigarette, plus a g-tube.

Those of you who've followed this blog through its history may recall that coffee was the last thing I clung on to in oral intake world, because it's so darned good, and also because I'd been drinking coffee from a very early age - I think I recall a cup after a family dinner with the cousins around maybe age 11 or so - but regularly since high school days.  A caffeine addict, in other words.

Back when I drank my last coffee, I think I said something along the lines of "I won't be going down the route of putting coffee down the tube though".  And true, it's not something I'll be doing on a regular basis.  Whipping out the tube and syringe al fresco on the busy cafe strip was fun, and just in case I needed it, reaffirned just how comforable I am these days with the whole cyborg-in-public thing.  Funniest part though was me reflexively putting sugar in the coffee.  Old habits, eh?  And I could very nearly taste it too.

When you don't have a regular intake, I can tell you THAT YOU REALLY NOTICE THE CAFFEINE EFFECT and it gave me a little better insight into the workings of my mind back in the days I used to have 3 or 4 of them over a morning.  That and all the peopleness of the outing - I went shopping a bit too - fried me just a tad so as soon as I could on the road out of the city I did this:

Ahh.

Never ceases to amaze and delight me just how grounding and healing even a moment in the quiet forest - or nature of your choice - can be.

Border security - is the fear about what you're not?

I've spoken on the subject of refugees and asylum seekers before, but it's not something that's going away, is it?  Just the other night I heard Chris Evans, the current Minister for Immigration etc saying that the issue in Australia of unauthorised asylum seeker arrivals by boat was being treated as overly simplistic by both sides; effectively a case of "send 'em back or failing that lock 'em up offshore" on the 'right', versus "the humane thing is just to let them all come; bring 'em on" on the 'left'.  He's right, it's not so simple - politically.

Australia is far from alone in having public issues with border control, 'illegal' immigration, refugees and so on.  We are however, perhaps amongst the most extreme when it comes to refusal to engage with the issue from a factual or relevant perspective.  And I mean this to apply to both sides of the political argument.  It seems currently impossible for anyone from the major parties to turn this subject away from fearmongering and poll-driven electioneering policy and towards a wider discussion of moral and ethical, yet practical behaviour - the real stuff of nation building.  Why should this be so?

I think largely it is because each party recognises that they have a split voter base, reflecting the deep divide in our society on this issue (if it can even be said to be one, given the facts) and with an election looming they are trying to be all things to all people.

Once again, we need to solve this ourselves, and the solution might be simpler than we think, as long as we take a long and wide view of this place and time in history.

This is the image we get a few times a week now on our TV screens.  These people are being escorted from their small boat to the processing (detention) centre on the charmingly named Christmas Island.  Do those folks in the life jackets look to you like brave but scared souls desperately hoping they've made it to the end of their perilous flight from all manner of danger and torment, or like prisoners under guard?  Looks count in the creation of ideas in the public sphere; whether intentionally manipulated or not.

Let's just quickly scan the facts.

• 14 million homeless refugees worldwide, to date, and not counting those yet to be assessed as such, like the 42 million forcibly 'displaced persons' estimated at the end of 2008.
• Last year Australia received 6,170 asylum applications (In the US it was 49,020, France 41,980, Canada 33,250 and UK 29,840).  Between 96 and 99 percent of asylum applications in Australia come from people arriving via plane, at an airport, with a ticket.  At our current rate of refugee intake, from all sources, it will take something like 20 years to fill the MCG (a large sports stadium, for those who don't know).
• Most boat arrivals who seek asylum are found to be refugees. Past figures show that between 70 per cent to 97 per cent of asylum seekers arriving by boat have been found to be refugees. This is far higher than for asylum seekers who come by air.
• Less than 2% of Australia's migration intake comes from asylum seekers. Yet Essential Research reports that 10% of Australians believe that half or more of our migrant intake were asylum seekers; 15% said about 25% and 13% said about 10%. Only about 18% of Australians were close to the mark in saying only 1-2%. (Is the misinformation is working?)
• There are about 50,000 illegal over-stayers in Australia. They are actually and technically illegals, unlike asylum seekers who are legally entitled to seek our protection whilst their claims are assessed.

OK then.  None of this explains the rabid and foaming cant streaming forth from all manner of sources about an invasion of boat people, of a threat to Australian sustainability, of a burden on our society and economy.  A phrase I've heard used a lot is that of 'queue jumpers', referring to the fact that we have a set quota of refugess we will accept in any year, and that those asylum seekers granted refugee status displace numbers taken from international, offshore processing centres.  But there is no queue, no waiting list.

What is the real fear here?  And why do some have it, decidedly, yet others seem to have none of it?

I think a lot of it might stem from in difference in the way people see themselves, and what 'being Australian' means to them.  I don't just mean their sets of morals or ethics, but how their identity-creation mechanisms are structured - in short, whether their self-identities are framed in the positive, or in the negative.

Even light has troubles with this stuff sometimes.  Or am I projecting? :-)

Perhaps it can be boiled down to a fundamental; do you seek to protect a perceived advantage, or do you seek to extend it to others?

Fear of loss of that illusory control again, eh?  But I really don't believe most folks want to see themselves as fearful, closed-minded, grasping, xenophobic, hyper-nationalist, racist, ungenerous, uncompassionate or even just unfair people.  Not that I'm saying those with a knee-jerk anti-refugee minset are necessarily any or all of those things, mind.  But it's worth remembering something about ourselves as a general rule, and how that drives our feedback loop - the media.  It's that as animals who have been prey as much as predator, we are wired to pay more immediate and focussed attention to potential threats, to 'negatives' than to more peaceful and non-urgent seeming opportunities.  So this is what we require our media feed us for our sense of security (being 'in the know'), for our entertainment, and our distraction from more mundane things.

How full or empty is that glass for you?  And what, exactly, would you like to fill the other half with?

Check out those facts again if you want, this 'boat people' thing is currently a non-issue.  What is at issue is the plight of our people, our species, those tens of millions of displaced people and refugess.  As it's a global issue, not confined to any one country, our elected leaders tend to do their best to ignore it.  A bit like the whole climate change thing.

I recently read a great line to do with Julia Gillard (Australia's current Prime Minister) and her statement regards the asylum seekr issue thst she'd "seek a consensus from the Australian people," which I feel in some situations is entirely laudable, but not in this one.  Too many are too confused, afraid, misinformed, feel stridently correct and are otherwise unbalanced.  Not the sort of populace you'd trust to do what's best for themselves, in other words.  The line was

"Great leaders can generate consensus, they do not require it."

Indeed.  The most poweful thing a leader can do for the people they serve is to show them a positive way out of their feelings of fear.  To give them hope, and to guide them to see things as they are, but in a positive light.

I strongly believe we are far better served by defining ourselves by what we are, what we can do, what we have to offer, and how we want to feel than by what we are not, what we doubt we can achieve, what we will not relinquish, and how we fear we will feel.

As I write, an election has been announced in this country, in about 5 weeks time.  I shall not be casting my (compulsory) vote merely to alleviate the damage I think the worst of the two major party choices available will do, but shall instead bring it right back down to basics.  Who shows me the best vision for the future?  M future, which is the future of my planet and my country.  A future not based on fear.

Things I want right now #2.

Baklava.  Which leads me to Apple Bogasha, which leads back around to Walnut Mamool, which leads on to.....the whole Lebanese bonanza, but it always starts with Baklava.

This is common for me, I shall tell you the tale....(insert wibbly lines to denote going back in time......)

Back in the very late 1980s I lived in inner-city Perth, Western Australia - North Perth to be exact.

It's a city.  What can you say?

I'd not long moved out of the parental home, was in a brand new state on the far side of the continent from my upbringing, had already started and dropped out of university, and was learning very important local and general life skills.  Like where to eat large, and cheaply.  In those days the Hare Krishna movement was pretty big and visible in Australia, and as part of their whole outreach and take on life they had a restaurant (Govinda's, I think it was called) in Northbridge, right next to Perth CBD, devoted to good wholesome vegetarian food super cheap, even cheaper to the unemployed.  No choices of course, just whatever few things they'd cooked in bulk at the time, only open at lunchtime, and huge servings for $2.00.  Perfect.  But I almost never crave their food.  Except sometimes the semolina halva. 

Right over the road however, was a little slice of bohemian heaven, unknown to (or unbeloved by) all but a colourful, eclectic, attractive and diverse bunch of clientele; the Lebanese cafe and pastry shop, Silvana's.  I was a regular from the moment I first went in (originally introduced to it and Govinda's by a girlfriend, I think), and remained loyal until I left the area a year or two later.  Let's go there now, it's 1988.

We're walking down William Street, an inner-city artery of four one-way lanes with an extra lane of parking either side, on the last block North before it turns into a horseshoe-shaped bridge (interestingly known as the Horseshoe Bridge) over the rail tracks into the city proper.  There's a newsagent on our right, a couple of small shops, and now we can see it; two tiny tables jammed into an oblique alcove with a couple of plastic chairs apiece, next to which is the door.  Above these two little tables, in the alcove, is The Window.  The Window would be displaying a couple of massive round trays of Lebanese sweets, in that stacked-up way they have of doing things.  Just to get you thinking, you know.  Anyway, time to go in.

It's always on the dark side in here, a shotgun-layout, with quite small (orange vinyl?  Can that be right?) banquettes on the right up against the wall, hung with colourful but cheap tapestry scenes of deer and so on.  To our left, The Window reveals that it continues inside.  A head-high glass partition atop the shop-length counter continues on from the doorway all the way down to the coffee machine, behind which is arrayed tray upon tray (often literally upon) of all manner of house-made Lebanese sweet things.  Belly dance music is playing from the cheap tape recorder behind the counter.  You can smell Lebanese coffee, rose water, honey, and dark tobacco cigarette smoke.  As this is your first time, you almost lose yourself, agog, eyes left as you head deeper into the shop, noticing now the hookahs up high behind the counter, odd brands of cigarettes for sale, another area further down back - can't see exactly, eyes still adjusting from the bright WA sunshine, a bain marie/pie warmer beyond the coffee machine with a dozen different Lebanese hot items....and oh!

A bit like this, but more, and behind glass.  And the guy would be a foot shorter.

 

Startled, you turn back suddenly, having passed the coffee machine without noticing you are being carefully but welcomingly watched by one or more extremely short people.  They were all really short.  Family business you see. What would you like?

What indeed?  Eighteen year old me is self-conscious enough to know that I wish to seem hip and down with the ethnic vibe so I'm not going to be ordering a cappuccino.  I'm going to have a Lebanese coffee thanks, for two (I was with a lady type person, I remember now) and....a Baklava looks good (oh God, did I say it right?).  This was all new to me, you see.  The lady had a Lady's Finger, I think.  Like a Baklava but narrowly cylindrical, hence the name.

Oh.  My.  Goodness.  We were served (at the counter) a little oblong silver tray with two tiny porcelain Turkish coffee cups, and ibrik (an enamelled metal jug with a long handle sticking out the side) of steaming, aromatic Lebanese coffee and two glasses of rose water.  They always give you rose water with the coffee, and refills as many as you like.  Plus the pastries.  And got ourselves a banquette.  Poured.  Sipped.  Nibbled.  Oh, I get this!

How to describe Baklava to someone who's never had one?  They're a simple confection really, a little bit of phyllo pastry on the bottom, a dense layer of crushed nuts, typically pistachio with walnut, with layers of phyllo on top, put in the oven until the top is nicely puffed and then cut into diamond shapes.  But.  Then this whole dousing thing happens, with a rose-honey syrup that oozes through the layers, making them denser and sweetly sticky whilst preserving the crisp crackliness of the top layers of phyllo and gentle crumbliness of the crushed compressed nuts beneath.  You don't want a large one, trust me.

I figured that if I ate at Govinda's, saving the cash, then I could justify spending up a bit on great coffee (I became instantly hooked on their coffee) and pastries.  But sometimes, it was raining, and there were only awnings on Silvana's side of the street.  Their hot food was marvellous too and compared with everywhere else but Govinda's also fantastically cheap.  Because they just know you'll be having coffee and pastry after - as if you wouldn't.

So when I get the baklava craving, it takes me straight back to Silvana's, and being wonderfully spoilt for choice; a feeling of great wealth and cosmopolitanism even on a stupidly low budget.  Maybe the food 'moments' I have are as much to do with what the foods represent to me from the past - their deeper associations - as the food itself.

Silvana's became for me the place where I got really comfortable alone in the company of strangers as an adult.  I had always had a bit of an, um, different way of dressing and carrying myself, and totally resisted buying in to fashion or social norms just to fit in.  At Silvana's I discovered there was a place, and a whole tribe of people out there, who didn't actually care about how you wanted to present yourself, providing you weren;t being a total wanker in people's faces with it of course.  And it was there that my love affair with coffee really began, the honeymoon was over, and this was a deep and abiding relationship that would carry through until just this year.  Plus, of course, Mama's pastries.

It became my little haven of self-reflection too.  When I later got a job at Greenpeace, which started at 3PM in the city, I'd walk in and make a coffee-and-cigarette stop at Silvana's preferably at an outside table, charge up on caffeine, and mentally prepare for the madness that was my job (another post, surely). A ritual, if you like.

I'm not 100% sure what became of Silvana's but it didn't last long into the '90s.  Soon around Perth you could buy little assorted packs of Silvana's pastries, and I'm guessing that it was the same business.  I admit I did used to wonder how they made enough money to stay open, and often suspected other sources of income;
if you know what I mean.  Perhaps the wholesaling just became the better earner, I don't know.  But after I'd moved down to Fremantle I'd drop in whenever I had to go to Perth, until one day....it was just not there.

I was really sad about it too.

Gosh darn it, now I really want one of their spicy savoury spinach omelettes.  Mmm.  Then maybe a coffee and a Baklava, or a Bird's Nest, or a Date Mamool........

Thanks, Silvanas, from me and for being an important little chink in the white anglo cultural cringe still wafting about Perth back then.  You played an underestimated part in turning things around in a better direction.

Things I want right now #1.

OK, time to fess up to this.  I've been sitting on it for a while now but I really do need to 'out' something here.  Giving up food is really, really hard.  The hardest part in one way is that for most of the time, it's just not an issue at all.  And then comes a moment; an inkling, a memory, an association......

(for those who've just joined us, I cannot eat the usual way; I have a feeding tube direct to my stomach)

They say that nicotine is a really hard addiction to conquer.  I used to quip that I was great at quitting smoking, it was easy, I'd done it heaps of times.  And then I truly did., I'm not exactly sure when but well over a year ago now.  It was actually far easier than I had built it up to be in my head, and the process really didn't take that long.  The aftershocks still pass by every now and then but they're so incredibly fleeting (like "oh look, I just remembered something I used to like about smoking...glad that's gone") and typically they only happen with strong external stimulus, like a movie where people really get off on smoking lots.

Food's a bit deeper than that, I'm finding.  I guess at its simplest because it's necessary for life - hardwired in.  Those cave paintings of herd animals are quite possibly from being hungry, holed up one long winter, and really wanting a good roast bison, just like mama makes.

So I'm going to start this experiment and just post up what is going on with my food longings as they occur.  There is no sense or logic to them, it can be anything at all, and as often as not something I either never really liked or have never had.

Tonight, the thing I can't shake is

Deep Fried Camembert, with a spicy plum and quince dipping sauce.

Such a simple thing, take a round of camembert, cut it up into little wedges, dip in egg, breadcrumbs, and deep fry the heck out of it for a really short time.  The textures are marvellous, and the combination of savoury crumb, aged bitey outer rind and creamy inner of the camembert with a sweet, slightly hot and sharp richness in the sauce is a mating of genius.

I don't know the history of this peculiar but now so-retro-it's-passe-already-again dish but I do believe it will stand the test of time and remain loved for centuries to come.  I want some now.

Never say never say never.

Because sometimes never is exactly what you need to say to make that thing work the way you need it to.

A bit over 10 years ago or thereabouts I used to be fond of quipping "If you asked me a couple of years ago what were the top three things I'd never see myself doing they would be: Owning a Volvo, working in hospitality again, and getting married.  So, it turns out I've done all three, and they've worked out pretty well."

Cute, huh.  The marriage is the only keeper of the three thus far.

The Volvo was a 1977 245 DL wagon, in white, bought from a young mechanic guy who was rationalising his fleet due to the birth of the second baby and also I suspect to free up funds to further enhance his amazing Gemini panel van.  It was great.  I may have mentioned earlier that my earliest vehicular proclivities were for the two wheeled variety so of course a white Volvo wagon is EXACTLY the epitome of the car of The Enemy.  I had in fact twice been molested traffic-wise by dozy Volvo drivers.  When driving our new car, I often wore a hat,completing the stereotype.

The ownership experience taught me many things.  It taught me that old Volvos can be great cars, but they are expensive to fix when stuff goes wrong.  It taught me a bit about the ingrainedness of prejudice.  For example, driving perfetly safely and legally along a right-of-way road, a young woman in a small red hatchback suddenly pulled out across in front of me from a side street, causing me to have to brake very heavily (rather good brakes on this car happily) and as she sailed across my bows the split second of shockand guilt upon her face immediately transformed into indignant outrage upon seeing the Volvoness involved and she hit the horn, raised a finger, and I could clearly lip read her snarling a "Fucking Volvo driver!!!" as she continued on her merry way.  I also learned the invisibility to most law enforcement types of a bland white family wagon.  Also their inability to comprehend such a conveyance as ours travelling at speeds in excess of 140kms an hour in a 110 zone, officer Matt, sorry, I promise I won't do it again.  The look on our young country copper's face as he did the double-take over the speed gun and recognized me was truly priceless.  He told me the reading on the quiet at work later - I was running late, you see.......

Perhaps the greatest learning from the Volvo thing was that sometimes it's a great idea to take car buying advice from a young clueless Spice Girls loving ballerina with no real knowledge of cars and such, especially as everything she had to say on the subject made no sense whatsoever.  Still, listening to the little voice deep inside me, I recognised something good for me to follow up on.  The omens lined up.  Good things can come from entirely unexpected directions.  The car served us faithfully until we no longer need one, and I hear she blew up a couple of months after we sold her - the car, not the ballerina.

Hospitality was a different fish in the coffee pot entirely.  I'd sworn off the waiting game as a mug's proposition; as something I was quite decent at, but 'beneath' my talents entirely.  Moving into a small country town whose main industry apart from smallholder farming was tourism, I naturally gravitated back to the game, to make ends meet.  I very nearly had a ball.  I let myself take it quite seriously (I know, I take everything too seriously - or used to) and it started off a whole new direction for me, not just in terms of portability of easy-to-deploy cash-garnering skills, but of malleability of outward character.  I enjoyed being that guy behind the bar now, the expert performance waiter, and as often happens I found myself doing more and more interesting managerial things quite quickly - sometimes simply because I was last man standing.  The adventure spanned many years and the breadth of our continent, before it finally undid me. 

Not me, btw.  Obviously, now, I guess.

Self-worth is not something one best derives from one's employment in an institution key to the perpetuation of inequality and greed in a society such as ours. You can justify it for so long with notions of giving great service, facilitating people having a good time, managing others well so they can continue to at least have a job.....but really it's just a crock.  Like the spaceship full of hairdressers and telephone sanitisers in the Hitch Hikers Guide To The Galaxy series.

I learned that when you buy in, when you take it on, you'd better be good at carrying heavy burdens (literally and energetically) or at not being there while at work. I got out after the back injury disaster, and with only one more big false start after that, still trying to do good through working within the system, I worked it out.  You know what I mean, I'm sure.


As for the marriage to Meeta, well.  I don't think it's too much to say that she would have professed a similar sentiment to myself about the high improbability of such a thing ever happening.  It's also a whole other story....and one from which I have learned, and am learning, more from and through than I ever would have considered possible in one lifetime.


So often it seems, the thing we resist persists.  There's a concept oft expressed in spiritual writings of all bents that you get back what you put out, that what you focus on expands, that energy flows where attention goes....all of that.  Go looking for trouble, and you'll find it - just ask any policeman or woman.  So when we put a big emphasis on what we never want to invite into our lives, the more it's there, behaving as the universe does, thriving on our 'negative' energy about it.  A friend once used to grow special herbs for personal use at home under lights, many years ago.  Not only is doing this illegal where he lived, but being a relatively closed monocultural system it requires great monitoring as pests and diseases can really get a hold fast.  He had good success for a long time - but ultimately gave it away.  When I asked why, he gave forth some sage wisdom I have recalled over and over again through my life since: "The more you try to control something, the more it controls you right back."

At the heart of it all, it doesn't matter what 'sort' of energy or attention you give to something, whether it's 'negative' or 'positive', that thing thrives and grows in your life as result.  Anyone who's had toddlers or puppies knows this.


Anyway, a few months ago I started looking at a this blog of someone (whom I don't know), and kept visiting every now and then as it was (is) written with honesty, heart, and humour, and talks about a life that has a couple of similarities with my own.  Then I read something that stopped me in my tracks for a moment.  They were going through a separation with their partner, and things had gotten ugly.  The (ex-)partner's family had gone off the rails somewhat and spread all manner of lies, slander and smears on this person's good character and when solid eveidence came to light that they had been entirely mistaken or misinformed, no apology, retraction or concession was entered into.  It was a really hurtful situation.  Our blogger expressed their pain, anger and disbelief beautifully, ut the line that stopped me was (I'm paraphrasing) "No matter what they say or do now, even if they do apologise, I know I'll never forgive them."

'Wow', thinks I,  that's pretty harsh and anti-life stuff.  I was moved at first to write something hopefully soothing and hopefully aimed at helping them realise some forgiveness - that this is about self-forgiveness as much as anything - until I woke up and remembered that my reaction is my business/problem and I'd best just be cleaning my own thoughts here.  So I left it, but every now and then it would pop back up in my head and niggle at me, and get me cleaning again.

The other day I popped back on to that blog and had a really pleasant time reading a post about how much has changed in the year since the separation shit started going down;  there was a mood of rapprochement, and yes, forgiveness.

I came away wondering if sometimes we just need to have that violent, self-harming reaction to boot us through the lesson we've been avoiding or just need to deal with.  Sure, I still want to go the life-affirming way whenever I can, but am still receiving lessons on letting the crap reactions be honoured too, for the light they can ultimately bring.

Just a matter of time?

.

SPECIAL WARNING:  Potentially confronting image further down the page.  Just so as you know.

Time will tell.

Time heals all wounds.

Time wounds all heels.

How long a minute is depends on which side of the bathroom door you're on.

Time flies, drags, passes, marches on, reveals the truth, changes things.  Time waits for no man, is the wisest counsellor of all, the only thief we can't get justice against, the fire in which we burn, the longest distance between two places. 

Or not.

I prefer the pithily expressed sentiment from an unexpected source - the consultant's consulting guru Alan Weiss - that...

"Time, in its majestic passivity, changes nothing."

For me, this is an essential truth.  We 'spend' so much time thinking time will do the work for us, or that we are at its mercy.  That it's time which has brought things to where they are.  That time will tell.  In actuality, it is we who make the changes, do the healing, wound the heels, fly, drag, learn, teach and reveal the truth.  If we change, it's not because of time.

It is the way of an inquisitive mind to so often confuse or conflate correlation with causation.  Time appears to happen, all these things seem to recur, so time must be the agent.  As a piece of logic it's really on par with the notion that as horses exist, and I fart every day, horses make me fart.

Our relationship with time is a profound one, and I'd venture to suggest that the peculiar relationship we have with it is one of the key things that keeps us feeling separated from the 'other' animals and the world and universe in general.  We are out of time as much as in it.

Still, we cannot escape the fact that time does seem to exist; thus we must live with it.

Having memory is like always having the past right here in the present, dilating or cheating the seemingly linear nature of time.  It means also that everything we ever were, we still are, at least in some sense.  What we once did will always have been done, even if the doings and memories now have a different meaning to what they once had.  It means that this unusually well-photographed fellow from about 1993 is still with me today.

Photo taken for album cover artwork by Jon Green, our then-bass player and arts specialist photographer.

It's what, now about 17 years since this was taken, but I am still him, with everything you can see captured by this quite amazing photographer still inside - even if much of it has changed in form, meaning, and action.

As much as one cleans, as much as one heals one's memories both conscious and otherwise, for much of our time in the present, we do tend to be who we have become.  As opposed to - perhaps - who we truly are beneath all the laters we have accumulated.

In a shamanic way of looking at things, how stuff seems to be is important, and is a way we can access 'the other side' to change what actually is.  The world is what you think it is, isn't it?  One could be forgiven for thinking that in the almost terrifyingly appearance-conscious society we inhabit that we are all deperately practicing a form of shamanism to remake the world (and ourselves) in an image we actually like.  Perhaps the biggest fear we have about how our out-of-control self-projected image translates to the world is the grab-bag of changes we call "the ravages of time."

Does how we look reflect who we really are, who we think we are, who we want to be, or what?

I'm far from immune to all of this, but I am learning a fair bit on my journey.  As the above picture of the Renaissance Man fop might indicate to you, I've lived out more than a fair share of vanity and insecurity in my time.  Some would say that it's 'karma' that the shape of my current opportunity (illness) is so detrimental to my outward appearance, as judged by the mores of contemporary - indeed also species - attractiveness.  Here's what I mean:

Me in the respite bathroom, last week.

I must admit, it's not a view I spend much time gazing at these days, but I'm used to the look of me now.  Most days I'm OK with it all, enjoying a silver lining glass-half-full sort of day, but naturally not every day can be like this.  Some days I pine for the old regular me and the lost 15 kilograms (33 lbs).  Don't miss the hair though, it's really a pain when it's that long.

Still, I am not at all unique in this, am I?  It's such a common thing to lament the 'ravages of time' regardless of your state of health.  True, men fare better generally in socialized terms, but we're not immune to vanity either.



The thing is, I have stumbled upon the realisation that time is not the problem.  It is not even the agent of change - time does not age us.  We just age, that's all.  How we feel about it, our reaction to it - how we look, how we function, what we've 'achieved' so far, all of that - is entirely up to us.  It would be silly to deny the influences all around us trying to convince us that youth is beauty and that this is what you want to be most of all; pointless to pretend that there isn't a social environment desperately dedicated to the glorification of youthfulness and turning every possible persuasive effort to unite us in our fear of..........what exactly?

Death, I reckon.

Simply put, much of it is some attempt to push the scary end-time as far away from top-of-mind as possible.  For the personal impossibility of this, I am grateful indeed to the skeletor you see up there in the bathroom mirror.

As Bart Simpson's teacher, Edna Krabappel once said to her class about marriage; "The truth is, most of you will end up marrying out of fear of dying alone."  So many decisions are made every day with this big dark scary thing looming over us, usually (we tell ourselves over and over) unconsciously.

Death, and its imminence, and our habitual modern suite of responses to it, is perhaps one of the greatest shapers of our perception of time.  It drives our youthphilic culture, a mainstay of consumer motivation, and simultaneously makes us fear ageing, the other main force behind the capitalist urge to acquire as far as possible beyond our immediate needs.

I wonder what would happen if we did something small, but radical, like have primary school age kids introduced to death and dying as a natural thing, with wisdom and compassion as guides.  If we stopped the sanitisation and quarantining of 'real-life' death - school excursion to the morgue anyone?  The hospice ward?  If we stopped also the desensitisation and distancing of mortality (especially of the needless and brutal kind) we practice on the TV news and other media, might we have a better chance of getting real with this stuff?

Or does the whole capitalist edifice rest on the bedrock of fear of The End?  It is often said that we in The West live in a society founded on Christian Values - but the meaning of such values is never quite made clear or agreed upon.  I would suggest that some of these values (the 'Christian' ones) which have carried over into more secular times are a little bit unhelpful to our healthy development.  Namely, fear of God.  Fear of death and damnation.  Institutionalised images of suffering as metaphor for the price to be paid for failing to live according to The Rules.  Death as a time after which you must be held accountable for all you have done - old age as a time during which you will be held accountable for how well you managed your retirement fund.

I'm not Christian-bashing here, just looking back to some of the systemic perversions that will inevitably crop up in any political system - which a church indubitably is.  Same applies to all organised rules-based societies or faiths.

It's about time.

Time running out, and the power the fear of this has over so many of us.  We are sometimes prompted to ask ourselves "if you knew you were going to die tomorrow, what would you be doing right now?"

And yet, since we don't know, and prefer not to contemplate it, we never do those things we think of, or live the way we would if we were free from fear.  We don't even usually learn from the exercise.  I speak for myself here of course, and shall say too that some of the moments I have spent contemplating - indeed preparing for - my own death have been some of the most gloriously and unexpectedly alive I have been.

Worth a try?  I mean, what's the worst that could happen?