Monday, May 28, 2012

Ritual Timing (Notes from TWATEOTU #5)

They come at dinner time, quite often, other peoples' visitors.

I only really noticed it this evening, the correlation.  Sometimes family members will come to help feed a fellow traveller here on The Ward At The End Of The Universe; very often it's the last and only thing they can meaningfully do for them.  I guess I missed noticing this timing thing because my own relationship with mealtimes and rituals of food has become so estranged from the average these last few years.

It's great that visiting hours are so flexible down this end of the hospital, and it couldn't be this way if we weren't an effectively separate wing from the main wards, although after regular hours we share the same single entrance and exit.  It means that family and loved ones can come and go as needed by their own circumstances and feelings, and not be bothersome for those elsewhere needing a more defined period of clinical rest as they recover, or recuperate.  Things we don't do much of down here.

Often, whole family groups will converge and share a mealtime.  It happens regularly that the person who is the ostensible reason for their visiting is not even a part of or included in the event; they may stay asleep or otherwise in repose in their room while the tribe mill about and perform their rituals of food sharing and bonding in the common room.  I wonder what they make of me, sometimes.  There they all are, the whole cast of characters displaced from the Sunday barbecue and transported against their instinctive preference to a place of pilgrimage and reverence, to an afternoon or evening of familial duty, making the strange world of death and dying with its pinging appliances and its encouraged quietude somehow all their own by spreading plates about a large table and performing one of mankind's most ancient and essential rites of togetherness.  As I shuffle in, cachexic and bent but smiling, nodding to each and mouthing hellos in a way that I hope indicates I cannot speak and do not wish to intrude; little red plastic jug in hand I make my way across the scene to the fridge and measure out some liquidy beigenesses from flasks and add some hot water from the kettle.  Shuffle slowly out again, carefully concentrating on not spilling things. It's clear I am a client, not a visitor.  What different things must they all think - if any pause to imagine my life at all, that is.

Or in the late mornings, as the visitors of others gather around that other ritual food time, when I come in with a plastic cup and a spoon and a syringe.  That might be difficult for some folks to watch I suppose, but I do not feel insensitive to their feelings or needs.  It merely is what it is when I pour some boiling water over a spoonful of coffee and a smearing of my home-brought medicinal herb butter and fill the cup up with kefir from my stash in the fridge, stir, plug in and tube-feed it right there leaning by the sink just like I'd do in my own home.  Clean up.  Shuffle back out.  I nearly never get commentary, and am seldom even kindly questioned. I guess it's just too outside the norm to fit.  And any visitor here is by simple virtue of being here not in their usual social headspace. What would you think, seeing this, in the absence of any information than what your eyes shows you?

It's such a great leveller though, the presence of dying.  I never feel like I'm really intruding on their grief or privacy or group space, because in large part there is no territory that can be claimed here.  The ownership of space is necessarily even more deeply transient than a hospital ward not because of quick turnover of patients or anything suchlike; rather because of the relative finality of relinquishing such space as we clients inhabit (and thus claim by proxy for our visitors) while we are still breathing the air here.  There is often slight awkwardness; although one encounters precious glimpses of emotions and personal depths rarely displayed or allowed in public it never seems to rear up as an issue or a problem.  Even in great distress there is this overlaying code of acceptance.  Of sharing, of egalitarianism, and above all of the desire for peace.

That's it.  A desire for peace.  In the face of what can only really be defined by a passing observer, like the visitor of another, as impending death, the thing that underpins any interaction is that single basic assumption: That we all in the end just want peace.

Peace be with you.

Sunday, May 27, 2012

New Old Hand (or Notes from TWATEOTU #4)

OK, well, I'm here now.  It's taken a few days to settle my head in properly this time, because this time it really is very different.  Almost identical to any one of the dozens of times I have previously come to stay at respite in terms of how I packed, what I brought, what had to be done behorehand, but then it's the teeny differences that give the game away. For this time I have not come to stay a spell at respite; I have moved to Hospice.

I arrived on Thursday afternoon as planned, carrying the same bags I always carried, into the same room they put me in whenever it's available, 8D.  It's at the end of the row of four more-or-less identical rooms on the wing, and is wonderful at this time of year because it alone of the four gets late afternoon sunlight streaming in.  It also tends to be the quietest, being furthest from the common kitchen/dining room.  Really, just like home.  In fact, now, it is home.

The NW view from my verandah, out across the valley.

The thing that feels most different now is my sense of comparative self when I consider my neighbours, of whom there are currently two, both women.  I'd not really consciously noticed it before, but previously I'd tend to assume that my neighbours would more likely than not be leaving - permanently, that is - before I did, as I expected to return home as my next thing.  Now I have no such assumption whatsoever.  At one point yesterday afternoon, as I lay half-dozing and half-listening to another round of Loud Talking Family Continually Trying Very Hard To Quieten Down The Kids From Squalling, Really, Sorry, We're Trying, I was suddenly seized by a maddeningly itchy curiosity to know my neighbours' prognoses.

I know, horrible, right?  In the middle of all this profound realness, bathed in the sidelight of our humble ward's proximity to the glow of the Other Side, my ego still wants to rank itself longevity-wise against its peers. Pathetically habitual. It didn't last long, but boy did I notice its fierceness as it arose.  It was the part of me that looks to know the pecking order; nothing more sinister than that old social habit.

We all do it, scan the entire proximal human landscape with our finest sensor arrays and seek to position ourselves in an internal landscape that matches pleasingly with our self-perceptions/delusions if possible just so as we can be comfortable making human contact.  But seriously, playing who's sickest?

Sure, I'm sure it's natural, it's just that I never looked at it before.  I was always in some ways still just a visitor, with all the usual disclaimers about certainty in life in place as usual.  Now I realise I am in fact one of those folks whose names I'd see repeatedly over the months.  In, out, back for longer or shorter ... then here for one last visit.  Sometimes those last visits would announce themselves symptomatically, and you knew from the sound of things - or sometimes from the giveaway presence of a tidal wave of family - that it would be a short stay.  Other times you just knew they were here "until."

I am now here "until."

Of the three of us, I am the "old hand."

I'll keep y'all posted.

The view from my armchair. Nice, eh?  That's my Echinocactus grusonii in a pot.  It's my favourite plant, so Meeta brought it up.  Soil from home, and all that. I have had it since it was smaller than a golf ball.

Maybe one day it will grow up to be a big fine specimen like one of these, eh?

Wednesday, May 23, 2012

Lasts and lasts and lasts...

So it's official, tomorrow I essentially relocate to Hospice as my home for the final run.  I'll come home some days for visits (probably nicer to see visiting friends at home too) but tonight will be my last night asleep in my bed.  My. Last. Night.

The last couple of days I have tried to really go into this feeling of doing things for the last time ever - with the background proviso that nothing is ever certain etc etc - and yet have failed to experience any truly profound poignancy or even sense of great loss about it.  When you know you're leaving your home for good, there are so many, many lasts you never thought of before. The thing is, it just doesn't seem to matter now.

I guess doing things 'for the last time' is something we mainly experience in the past tense, as we look back at a moment and identify it as the last time we did X or Y and know that in all likelihood we'll not be X-ing or Y-ing ever again.  That can give rise to nostalgia, wistfulness, longing even, probably because we can instantly lament such a loss - it's gone.

Then again, maybe it's just practice.  Or attrition.  It could be that as my illness and journey has been so incremental and inexorable, with me having to lose and let go of one ability or experience after another, over years, that I've just worn down all the sticking-up lumps and bumps of care and attachment - that my plane of interaction with this stuff is smooth at last - or that I've simply become super-efficient at the process through practice.  You know, that old 10,000 hour rule.  Spend enough time at something and it becomes innate.

I think for a loss to be truly painful you really have to want not to lose the thing in question. 
That's probably it.

And stepping out a few paces, turning around and looking back at myself, I see a guy who wants to lose this stuff.  Who is ready to just stop caring about little attachments like the comforts and familiarities of home.  It's a wonderful little house, and we have made it a loving home.  But it's not right for me to do my end-stage dying here.  It simply isn't.

Home is a thing one carries within oneself anyway, I often feel.  Home is that thing I have made up of Meeta, our house and garden, the things we habitually do together and for each other, and of course the animals.  The physical stuff is the stuff I see as going now.  And to do the next spiritual step, I must leave home, in a sense greater than just the physical.

That's a good way to describe it today, actually.  Dying is where we leave behind the substitute Homes we create here in Life, to return to the Home that encompasses All Things.  Leave the small and re-enter the big.

So now as I notice myself noticing 'lasts' I am getting a wry chuckle going inside.  Friends have asked is it deep, is it depressing, is it joyful, is it ... all sorts of thing they have asked.  The answer is yes to all, it is all those things.  But each lasts merely a fraction of a moment, long enough only to be noted.  There is no lament.  There is no grim clinging.  There is no resentment or even childish grumpiness.  There is just a silly little laugh at myself that I could have spent so many decades on this planet actually caring about some of the minute and inconsequential things my life got all filled up with.

So pity not the letting go.  I'm not really going to miss doing the dishes, really.

Lastly, speaking of lasts, it's also time for the last run at raising enough dough that Meeta has as unstressful a ride as possible with my funeral arrangements.  The fund has gone well, and indeed much has already been spent towards making things easier post-mortem.  But if you can spare a dime, or are (or know of) a secretly wealthy benefactor who can help with more than a little change in these in-parts-difficult financial times, it would make me very, very happy and grateful.  Here is the link where you can contribute.  And I can let go of this thing too, at last.  Thank you.

Tuesday, May 22, 2012


But first, The Plan; a little necessary update

Where I'm at presently is home, which is nice enough.  Lovely to be back here after the long hospice stay, but alas that too shall pass.  And pass soon enough.  But the Plan as at now is that really I'm about to leave home as home, and be far more at hospice (I shan't be calling it respite any longer from now, I think) than here.  Come here for day-stays and such, but get myself a 'permanent' room Up There.  For as is the way of all of existence, things have changed some more.  The details are unnecessary and sort of irrelevant, once parsed and passed along; the effective outcome is to bring my final line of crossing that much closer. The line beyond which I do not take nourishment - eat - at all.

Food will all be gone, and by that action, so shall I be; just a little while later.  Explicitly, I am reducing even further my caloric intake, but cleansing as well as I go along.  Much like one feeds one's escargot a cleansing diet before their planned ending (heliculturists refer to it as 'purging') I am cleansing the old insides too.  This may vary but right now it's the Ayurvedic standby of brown rice, mung beans (sprouted before cooking), supportive herbs and spices, ghee and maybe one type of vegetable only.

It struck me afresh the other day that food is how we are made.  It's what we're built of.  My entire life is due to food.  And it seems entirely fitting to look back on my life through the prism of food, precisely because of the means I face to meet my end - the end of food.

Here's what I think I'm going to do.  I'm going to take those fleeting memories or inspirations I still have about food, about specific food ingredients I think, and use that as a point to take me on a story through wherever it leads me.  And write it here as I go.  I think we might all like a bit of that, mightn't we?  Not like I could burn it or put too much chili in and you'd still have to be all polite and say "oh, no, really it's very tasty ... " eh? :-)

So, calamari.

I LOVE calamari; specifically meaning food made of the (usually cooked) flesh of squid.  It holds a very special place in my memory too, because it sits as one of my very first 'special' foods.  You know, special as in a luxury choice rather than a basic staple.  In my case, battered fried calamari rings instead of the then-much-cheaper slab of fried fish with our Friday night fish & chips.  I understand this is a bit of an Aussie thing though.  I would again suspect our Italian and Greek waves of immigrants for blessing our shores with the revelation that this marvellously tasty morsel is even edible, let alone deliciously so.  I have eaten it more ways than I could count and can settle on no one favourite dish.

It's also one of those foods that is embarassingly easy to cook just right, yet is so heartbreakingly often ruined by clumsy cookery.  And less-than perfect calamari is a dismal offering let me tell you.  There is little else in the world as disappointing as tough, rubbery calamari when you were all set for a tender scrumptious mouthful of bliss.  My reverie on this textural delicacy was triggered by one of those humdrum daytime cooking programs targetted at the SAHM demographic, so there was not much fancy going on compared to the evening time foodie-first offerings.  Simply fresh squid, washed and cleaned, tubes sliced nicely, dusted in flour and dropped in hot oil.  DONE.  That is all it needs.  To get all cheffy though, the guy made a lemon aioli, basically a lemony garlic mayonnaise.  Now normally, I am of the opinion that the ubiquity of the fish+lemon pairing in modern cookery is nought but a fad outlived its time.  Deeper down I think many people use lemon to mask the 'fishiness' of many types of seafood, protecting their coddled, narrowed palates from any subtleties or nuances arising from the flesh itself, especially when we're talking about the battered stodge that passes for most Australians' fish intake.  To me, the lemon just kills most fish.  But with calamari, it is almost the perfect accompaniment, in moderation.

Yeah, I missed calamari.  I'm over it now.  As a little kid it did make me feel grown-up and special to choose the calamari (and to call it calamari, not just "squid rings") and later in life I would as often as not take the gamble in restaurants that they'd get it right and order something like a chargrilled baby calamari salad. There is something about eating the baby calamari that is just very, very honest.  It's a terribly explicit thing to do, to put the entire tube and tentacular array of a baby beast in your mouth, like you were some apex predator monster-of-the-deep (oh, wait, um ... ;-) and risk angering the Great Mother Squid next time you go to sea, or something.

I cannot recall the last time I had calamari exactly, but it was in Bunbury, takeaway from the fish & chip shop, and I enjoyed it.  Thanks, squid.

Do you like squid?  More importantly, who would win a fight between a giant squid and a big tractor? :-)

Saturday, May 12, 2012

No man left behind.(Notes from TWATEOTU #3)

One of our number departed early this morning; I heard her go.  Well, not exactly.  What happened was that I awakened, unusually, at just after 7AM feeling completely perfect, fine and refreshed, and even my room seemed full of light.  Except the sun wasn't properly up yet.  Then I heard it, what could only be the sound of the daughters I have come to know a little in the shared kitchen reacting to their mother's NOW finality.  I stood for a moment, paid my silent respects to my erstwhile neighbour, and went back to sleep.  By the time I left my room at 10 the room was empty, cleaned and changed, the whiteboard by the door erased too, all the people drained away to other places.

I'd been seeing clues.  This lady, I'd been told, really liked her sweet foods, and one of her daughters was bringing in treats of chocolate cake, and jellies, and icecreams, and ... they were starting to pile up a bit in the fridge, untouched, the last three or four days.

There is a sense of camaraderie down here on the ward, most especially amongst the clients.  Although we do not converse generally, I fancy that we consider each other from time to time, and that there must be for each of us at least some sense of a kinship of the dying.  So I figure my other remaining neighbour, she who was previously nameless but whose whiteboard has lately sprouted both a single name and a childlike drawing of a 'nanna' face, felt the loss of One Of Us in some way too.  And now she is doing That Breathing Thing, and the numbers of quiet new visitors are growing as the day goes on.  Word must have gotten around that the time is soon.

Meditating on time the other day as you do, simply noting just how much of my life involves knowing what time it is - a glance at a clock happens so frequently - yet having no good reason to know, the wall clock in my room suddenly threw itself off the wall to its noisy death in shards of cheap plastic and machine parts six feet below.  Just like that.

Now I can no longer glance at a clock and have to consciously look at my watch.  I discover it only takes that little bit of marginal discomfort and effort (tight long sleeves in this weather and dodgy hands means no casual wrist flick glance, I have to drag the darn thing out and down and remove any sunglasses because I can't read the screen through polarised lenses) to entirely change my behaviour.  I just hardly ever look.  Timekeeping was just like so many other things, a dance of habit, of empatterning, of rhythm and tesselation. Grown-up version of rocking oneself in the cradle, I suppose.

Time down here on the ward does not match time outside anyway.  If you are very gentle with yourself, if you can carefully breathe off all the accreted layers of preconception and belief about How Things Are, you can detect time running in different ways for different folks down here, we clients especially.  Some of the old-hand nurses see it quite clearly.  It is they who make timely phone calls to gather family members, etc.  Apparently, my observed time has changed lately too.

Still, I enjoy the idea of our little corps of dying comrades down here on TWATEOTU, that we operate to that (US Maries Corp I think) creed of "No Man Left Behind."  By which I mean "all are welcome to join the death space, unjudged. You shall not be left out alone."

I suspect that by the time I go home Monday, I might be leaving an empty ward though.  And that's the other thing we all have so poignantly in common: No-one can say for sure.

Wednesday, May 9, 2012

After The Fall; A Story.

OK, so here's a story.  Story, as in fiction.  If there is such a thing as autobiographical fantasy fiction, I suppose this is it.  I've toyed with 'outing' this story for quite some time now, partly because I do not know if it is any good as a piece of writing, but more because ... well, with some fantasies once you speak them they can never come true.  You'll see what I mean.  Right then. (Breathes in, breathes out.) Here starteth the story:

* * * * *

It's such a quiet and beautiful place out here, but the sky plays funny tricks on you. Driving all those miles across the flatlands, the big blue seems to swing between being a cool wedge above you, almost oppressive, as the tall whipcane and dense shrubs press close to the road, then suddenly it splits completely apart like the pages of a book falling fully open as the taller scrub rhythmically clears, and you can see forever – the heavens now a majestic, immeasurable lightness all around. I'm glad we came.

Then you come to the gorge, another sudden thing. There is no warning, no real incremental change in the complex patchwork monotony of intertwined tall scrub and flat low desert grassland; you just, well, you reach a carpark. And there it is. That arching infinitude of sky now plays another trick when you step out of the van and walk to the edge; you can feel it pouring in to the massive cleft – you can almost imagine the potent air rolling about the chasm of ancient fossil beds and red rocks like a second river above the silvered thread of water that runs far below, the sometimes-mighty Murchison. It's like the sky has vertigo.

I wonder what B's thinking now. I bet it's something like “What will I tell her?” or “How will I tell her?” Maybe not. Maybe he's not thinking much at all just at this moment; just letting it all sink in. It's very early in the day after all, and we sat up late last night around the campfire not saying much, just enjoying the peace and the sky, so maybe there's some thought like “Well, it's not like there's any hurry to sort it all out now.” Probably though, underneath it all, B's really pissed off at me, as well as sad. I would be if it were the other way around, but I know that he knew that I knew that he knew that this moment, or something like it, or even totally different but with the same end result, could have happened at any time on one of our trips. It does not strike me as especially odd that I find myself unable to read B's thoughts; nothing new there. It does strike me as odd that I find myself here at all though. I am dead, after all.

B must feel so incredibly alone right now, out here at the edge, looking down unseeing, knowing that somewhere down there my torn and useless body lies silent and still – I wonder if he can only imagine it whole, or if he has more horrendous visions, you know, of parts and flesh and bones sticking out and such. Of course, he is in no real doubt about what has actually taken place, he is as sure as anyone could ever be right now, but to have this burden placed so brutally on his shoulders, to feel this loss, this hurtful love, and undoubtedly some sense that he must now do the right thing also, well, it's not something one could ever take lightly. I may not be able to read his mind or his heart, but I can still feel, I notice, and I do feel for him deeply. And too I feel deeply that he will do what's required, in his own way, perfectly. Such a friend, even now.

It's funny, as I got sicker and slowly more and more limited, the 'Lotto Dreaming' changed. You know, most people have it; the instant set of answers to the questions of what you'd do first if you got a large lump of money suddenly. Better house with leafier views and more quiet, that stayed. Philanthropic ambitions towards helping my fellow-travellers and our planet stayed. But things like new cars and travel plans changed a lot, as it became obvious that I wouldn't even be able to drive a car soon. I'd let go on motorbikes already, as it got too dangerous riding my last bike. But the urge to travel did not abate, as I've always loved to move through the landscape, and seek connection with the earth and her people in different places and ways. Nature travel, that's me. And when I thought of travel, I thought sometimes of travel as a couple, and other times of travel without her. I'd imagine special places experienced together, a refreshing of our loving bond in the cathedrals of the world away from civilization, in the forests and on the coastlines. And equally, of visiting such sacred places as just … me.

But I'd need a travelling companion for that, either way. There was always going to be a clear first choice, old friend B. So you can imagine my delight when a little money did come our way, and my weird joy that it was, in perfect reflection of the modus moriendi currently expressed in my illness, not an extravagant sum but instead just enough to do a little more with life. Improve the house a little. Upgrade the car a little. Do a little travel. Importantly, not to have to concern ourselves with the usual bills and such for a few years if well-husbanded. Just the right amount, really.

So re-started my adventures with B. We used to live in the same town and once were thick as thieves, living an oddball bromance as extrovert cafe-culture cognoscenti, doing life as art and damning the consequences, he the errant artist and me the young gadabout musician. Japes and scrapes, beauty and abandon, all that romantic stuff without the homoerotic undertones. Times changed but our connection only deepened, even when we moved apart. We found ourselves in the same city again later on, and began a new chapter of our odd and intense little friendship. And again, apart. Always there for each other in spirit, if not fleshly available. We had the sort of friendship that spawned its own culture of in-joke and innuendo, language and the transcendence of language, and the sort of mutual respect that can only come from knowing precisely what it is about the other that really gives you the shits and which you judge so harshly, acting it out, and getting over it. Letting each others' sleeping dogs lie comfortably, whilst not transgressing our own moralities and ways. Where you can spend the whole day being an asshat if you need to be, and knowing that your friend will see straight through it, and be OK anyway.

Then there was the thing about The Road. We'd often hatched great dreams of travelling adventures, many times designed around some artistic notion or endeavour or event but mainly just for the fun of it.

Thus is was that we started our first little trips together. It worked out that buying a decent older large campervan with a view to re-selling later on, or maybe giving it to B at The End, was going to be smarter than hiring. And then you can have fun with fitout. Ours had an annexe attachment too, so there was a whole extra canvas room where B would usually sleep, unless he slept out under the stars, which happened a lot as we chased fair skies whenever possible. The first shakedown trip was a blast, all full of laughter and giggles and good weather – and enough space for he and I to properly see how well I was able to manage this and that, to adjust to a new relationship reality. For as much as we were equal friends, there was always underneath the issue to be settled, of transactions. He was driver, and in a large way carer. Contributed no money. I covered our costs and was essentially looked after. Decisions were mainly mine, based on where I wanted to go and how much travel I could manage on any given day. It took time for it all to be OK, for the power dynamics to go away. For us to feel out and accept the unseen edges, those things that need to go unspoken so often; like exactly how much monetary freedom there was, and wasn't, when it was only one of us doing the paying.

Forests and beaches and the wonderful nostalgia of sitting in a sidewalk cafe, the two of us as of old, in what amounts to eccentric dress and style most everywhere we go, especially when I have my coffee in a “small jug, double shot espresso, a dash of cold milk” through my feeding tube. All those years spent idling, 'contributing culture' as we liked to say, in a cosmopolitan port city, now writ small and a little gentler, but no less close and alive, in small towns along the way. Parking the van in a fine quiet spot in the bush nice and early, making a fire and not talking until tomorrow, as the stars come out and wheel about. Driving down “that road there” because it looks like it might be a more fun way to get close to our originally intended daily destination. Some days not having one at all. After all, at every moment, for me at least and often poignantly for B I'm sure as well was the underlying knowledge that this would likely be my last time here. My last time anywhere, even.

Right at the outset, I had laid it out: my illness might rear up and suddenly make me very ill, threatening to kill me, and possibly doing so in a quickish fashion. That was fine by B, naturally, in theory. But what to do in such a moment? I had to be explicit, to feel safe. If it was a case of creeping 'unwellness' then we'd manage it in real-time, and head homewards if possible. Hospitals were to be a very last resort. In all other cases, there was to be no panic, and no resuscitation. I may for example begin to choke on my own secretions and be unable to clear them. It would be ugly to watch me drown, but there it is. One of the whole deep meanings of our travels for me was to live out the dream of “at any moment,” and to walk a meditation on “in any place.” B needed to be OK that he might have me die on him at some point. Typically, he allowed that he might do the same. Snap. Philosophical intent notwithstanding, we had forged through the years a most loyal trust, and with this sprinkling of sunlight, this little explicit commentary, it was recharged and avowed afresh. He would be my friend as I died too, and I his, if it came to that. We would allow each other choices that included not being 'saved'.

We used to be such talkers. Then as my speech got harder and harder and eventually all but disappeared, we fell more and more silent together. B was still happy to ramble and be heard on whatever topic took his fancy, especially when he'd had a toke at the end of a day's driving, and I was happy to listen and nod and enjoy. It rather polished my own habits of speech really, the difficulty of it. Timing was impossible, so I became a speaker (using my text-to-speech program on my smartphone mainly) of one-liners. Zen-like utterances. Pithy witticisms. Such speech tends towards the surreal, really, and after a time it became a habit of the mind, to think in shorthand as well. That's what led to me one day mentioning, as we drove, that “An accidental demise would be just so much neater, all things considered.” I watched B's face as he took this in, his eyes ahead on the road, poker face in place. I caught just the slightest micro-flash of twinkle before he abruptly and expertly flinched at the wheel, wobbling our van alarmingly for a moment, then bestowed upon me his beamiest and most mischievous, loving smile. It said “I'm with you, brother. I get it.” The details we once would have chatted about, back-and-forth, for hours, enumerating all the practical, emotional, personal, omenological … any and all the reasons that a sudden death would trump this agonising lingering that had become my life, and just as importantly, defined so much of the lives of others. One other in particular. Oh, the relief to know that she is free of the attrition at last.

The wind blew quite hard last night for an hour or two, enough to polish the top layer of dust around the campsite and remove all yesterday's foot prints and scratching, if not the tyre tracks. So what an observer from up here would see, surveying the scene from above, is very little, in terms of clues. Footsteps fro the van to the fire and back, a few times. A dead-end trail to the edge of the scrub, still the odd droplet splashmark at the end of it, under the shrubs, if you were to look closely. And two sets of footprints only leading from the fire to the edge of the gorge; one of which of course is B's.

He squats on his haunches, curling in upon himself a little, sobbing gently now. Again I am keenly aware of just how much I feel for him right now, feelings clearer and stronger than those I had only yesterday, when I and my body were all of a piece. The hurt is profound, and I am sorry. I feel no remorse, I am not sorry for what has happened, but I am sorry for B's pain. I wonder if I will see her again now. I do not feel pain for her. Perhaps because this is not yet real for her.

It's right there, right up close in his face, you can see the lines and ridges reflected in his glasses. Stands up at length, stretches a little, wipes his eyes and drops his hands heavily to his sides. B looks out and up, far away, then his gaze slowly, slowly lowers. From the horizon, the opposite side of the gorge, down through the strata of fossil layers, back in time, playing along the sparkling kinks and bends of the river, down to his feet. He breathes in slowly, deeply, knowing he is not thinking this all through properly, but that it doesn't matter, this is right. Breathes out. You can see the tingle of fate about him, you know this is one of those moments where lives turn and gyre into their new directions. Watches himself as if from above, as if from where I am, pushing one foot forward. Shuffles it out to the side, and then in one-two sweeping motion erases the five letters written there in the sand with a stick, in clear hand, only very recently: “I fell.”

You can help me with the cost of my natural burial here, if you wish.  Thanks.

Monday, May 7, 2012

Entropy Ensues (Notes from TWATEOTU #2)

When mention is made of what is often referred to as "the Law Of Entropy", more correctly known as the Second Law Of Thermodynamics, people tend to gloss over the important first part and simply reduce it to "Entropy tends to always increase".  Now it might well be that such a statement holds true, but the law itself clearly explains that "The entropy in any isolated system not in thermal equilibrium almost always increases."  So we're talking about closed systems, something around which one can put some sort of boundary, and of course it is an eternally open philosophical question whether such a system might ever be said to exist, or conversely whether it might be that the entirety of Everything is indeed a closed system.  Then there's the fudge: " ... almost always increases." Why not always?  Surely a Law must be universally applicable to be held up as a Law?  Well yes, but this is a special case as we're talking about the forces of chaos, that dynamism from which order spontaneously seems to arise and into which order seems almost always destined to decay.  Anything can happen with chaos, and entropy.

You may recall my application of the scientific method to form an hypothesis explaining why I always get delivered either exactly 15ml or exactly 17ml of my PRN pain medication.  It was dependent not just on the (to date consistent) personal preference of each nurse, but a factor of the pairing of nurses who brought me the dose.  Remember that nurses themselves had shown they were consistently either '15' or '17' deliverers by personal nature: That if I got two '17' nurses, I'd get a 17ml dose, if I got one of each type, I'd get a 17ml dose, and only if I got two '15' nurses would I get a 15ml dose.  Never over, under, or in between.

Chaos, or perhaps entropy, has reared up and spoiled the neatness.  You might have read about the 'observer effect' in quantum and particle physics where the actions of the observer inexplicably affect the outcome of the experiment - maybe such a thing has happened here, for in the last 36 hours or so things have shifted.  Twice I got a 15ml dose when delivered by a '15' and a '17' nurse.  Different '17' nurse each time, but same '15' nurse.  I have counted, and it seems there are on rotation some five '15' nurses.  Looks like what we have here is a rogue 'Alpha 15', one whom the other nurses defer to in this matter at least.  Her place in the social hierarchy, and in the professional hierarchy too, would seem to add weight to this notion.  One of the older hands here, and universally loved and respected by staff and patients alike, so it seems.

Then this morning ... unmistakably, 18!

As a kid, I was not especially tidy, at least according to my mother. But I have always tried to cultivate tidy habits of mind, and enjoy my own internal games of applying tesselation and rhythm to the minutiae of the everyday.  Somewhere along the way I became a physically tidy person too, you know the sort about whom one's work colleagues actually make comment on the state of one's desk.  The sort that maddens his wife through a sometime inability to simply walk past a messy and (to my mind) potentially hazardous array of dirty dishes and kitchen rubbish, having compulsively to tidy it to a certain standard.  Just a little CDO (that's Obsessive Compulsive Disorder arranged alphabetically, the way it *should* be lol) you might say.  That's why noticing such patterns in life as the 15/17 things tickles my fancy, it connects with a deeply-carved pattern with which I engage in the world; that of seeking patterns consciously.  Increasingly though, it's the breakdown that interests me.

Because every single judgement call I make on it is, ultimately, exactly right and exactly wrong.  Every pattern that pops up proves, when seen from a different viewpoint in space or time, to be also a signal of the dissolution of some other pattern.  Chaos and order simultaneously.

I realise that these two forces are not even really things; they are entirely relativistic.  Nor do they really turn me on.  What I'm seeking is the heart of entropy, which is tempting to view as akin to order emerging from chaos (temperature tending ever more towards sameness) but then when we step back, we know that difference cyclically emerges from sameness.

Somewhere in there, in between the tendency to order, and the tendency to disorder, through a mechanism that is half entropy and half - well, way back when I started this blog I thought I could do no better than describe it as 'light' - is the line that divides life and death, I think.  From the perspective of someone alive, anyway.

They say you are supposed to go towards the light.  For me to get there it seems like the path leads through the darkling lands of entropy, ripe with humus and the squelching substrate of metamorphosis underfoot.  Recall the light in a deep forest,late in the day.  How sharp those swords of sunlight slanting beneath the branches, sparking in your eyes and giving shape to the gentle air with its freight of dusts and creatures of the bteeze, all ultimately giving in to the inexorable logic of gravity and their own place in things.

Sometimes in the morning as I lay not yet fully awake I like to imagine I am in a bed made up of the forest floor.  I imagine my blankets as a soft, warm layer of earth and turf, my bedhead a mighty tree, my head resting on a buttressing root.  There is a gentle light, and butterflies.  Maybe a browsing kangaroo. Quite often I also see half-buried an old skeleton of some small animal, the bones so starkly designed compared to the random clutter of the leafy forest floor. It feels so welcoming and safe and ... grounded.

There, deo volente, and happily, go I.


Saturday, May 5, 2012

Notes from the Ward At The End Of The Universe, 1.

Max was gone when I arrived this time.  Down here in the satellite ward, our little 4-room hospice and respite wing, we each have a whiteboard outside our doors.  Usually it will have the occupant's name, and it might have a message such as "PLEASE limit visitors to 3 at a time" or some other such caring admonishment.  More often the boards are decorated by loved ones, especially the kids, with drawings and notes, and hearts, like a giant 'get well' card, except minus the 'get well' bit.

Max had been here I think nearly 3 months, and in that time I'd not met him.  We don't typically meet, we clients (that being the preferred term to 'patients' these days), except perhaps by accident and through strange channels. Immediate neighbours get to know each other's television preferences for example. And it's not done to ask about other patients, especially down this end of the building.  Max's whiteboard did not tell me his surname, but said in one place "Max The Music Man" and in another "Max The Muleskinner" and featured a particularly bad drawing of a guitar, all anatomically incorrect, surrounded by hearts and "love you grandpa"s.  Max was old but not very, and had some disease that was killing him incrementally.  He did not seem in much pain. Of course, with just these few clues the temptation is to run wild with speculation as to who Max is, what amazing things a musician/muleskinner might have lived to do and see, but here ... what I am seeking in connection is a small and simple feeling-out thing.  Like an auric touch, or something.  Max had many visitors, but more and more wished he didn't.  That last time two weeks ago I noticed, on my peregrinations past his door, shuffling to and from the kitchen, he would usually be just sitting on the side of his bed, back turned, staring out the door.  I understand he did not go home.  Or rather one might say he went Home.

I'd gotten used to Max, the faces of his regular guests making tea in the kitchen. There's an odd combination of distance and immediate intimacy when someone like me - clearly a client of The Ward - meets someone else's guest.  They are already vulnerable and in an unusual place in life's journey, and of course the rote greeting is something along the lines of "how are you going?" but here that almost never gets asked up front.  Instead, a lovely thing happens, aided and abetted by my inability to speak anyway - we just look at each other a bit, and look away, and maybe stand a little too close to each other, and let our non-verbal talking do the talking.  So much gets said in that little kitchen in the silence broken only by the burbling pump on the fishtank, or the whisper of a kettle boiling.  Quite a profound sense of connectedness can be had by two strangers in a room standing inappropriately close, touching shoulders, leaning back against a benchtop and contemplating the fish together, in the face of All This.  I think people become very aware of how they are projecting outwardly in such times and places, and I like that I can 'converse' with people on that level.  I liked most of Max's guests, apart from a couple of pushy men about his own age.  The sort who hadn't really been such great friends through life perhaps, but now feel they have some role to act out, some agenda of their own to salve at Max's expense, and which he suffered through with grit and strength if not with perfect grace.  They were not available to me on the regular human bandwidth we use in The Ward.  Shut off.  Oh well.

Sometimes, clients are nameless, according to the whiteboard at least.  Next to the soft-feeling Kathleen with such gorgeously-gentle visitors is one such nameless older woman, arrived today or last night, accompanied by two women younger by 25 or 30 years, perhaps daughters.  Maybe there are no whiteboard markers handy today; after all there was a conference down the hall yesterday.  But then, there's another phenomenon I have noticed over this last year or more - the Nameless tend not to be here for long.  My sidelong glance (this is allowed under the Unspoken Rules Of The Ward, as long as it is done with respect and love; we can always pull our curtain if we do not wish to be seen) would tend to confirm this expectation. You can see the weight on her face now, and the distinctive  gibbous aura of waiting on the other two women that I have seen so many times on the loved ones of those Close To It Now.

I've said it before but it's a privilege to be here, to have had such a time to sit with all this wonderful end-stage reality.  Not all the deaths I've sat through here have been good, or easy, they've all been different of course, and probably half of the clients like myself go home rather than Home at the conclusion of their stay, but it's the life here, the nuances and flavours of how people are in the teeth of it all that I love.

It's true, I am romantic, and always have been to some degree, on the whole death thing.  That's a discussion for another time perhaps.  But here's to Max, one of my longest-term neighbours.  I understand from things overheard in passing and from the things I felt that he was in the last weeks eager to go, and I am glad for him now.

Going home is still something I expect to do for now; I am not worsening so rapidly that this will likely present much of a problem.  But already I am looking at that time when I shan't.  I wonder if I'll know in advance, whether I'll be leaving home knowingly One Last Time, or whether events will just transpire that way.  There is always the Space Junk option, of course (and if you are the prayerful kind, if you believe in intercessionary thoughts and so forth, that is the one thing apart from sufficient day-to-day comfort that I would ask you to pray for - hurtling space junk and a spectacular fiery demise.  Yes, seriously.)

In the meantime, it's a beautiful, perfect showery overcast autumn day.  I'm going to go and breathe some more of it.


Wednesday, May 2, 2012

There are two types of people ...

We've all heard some variation on the riff, where someone starts out "look, there are two types of people ... "  Some are deep and weighty: "Those who cannot do what they are told and those who can do nothing else" (Cyrus H. Curtis), frivolous "Rolling Stones people and Beatles people" (I think there was a deleted scene in Pulp Fiction where this was discussed by Mia and Vincent at some length for example) or somewhere in between like "Those who are willing to work and those who are willing to let them." (Robert Frost).  But my favourite comes from Edward A. Murphy, yes, he of 'Murphy's Law' fame, and it's "Those who divide people into two types, and those who don't."

In my little world I've noticed a clear divide amongst my legion of caring nurses here at hospice.  It's a little thing, but I think probably a telling one, and there really is no grey area on this that I have observed.

I take painkillers, and the reasons for this are mainly a) pain and b) as I have mentioned elsewhere, I value the side-effects of the opiate classes of drugs in smoothing my path and assisting me to welcome death with more grace and openness.  Some would call the later drug-seeking behaviour, and if you think that fits, I'll wear that. I in no way intend to demean or cheapen the lives and experiences of those who suffer such labelling (my many friends with gastroparesis for example for whom agonising attendances to the emergency room are too often treated with scepticism about the genuineness of their all-too-real pain, especially as they know so much about painkillers through hard-won experience) nor that of addicts living through their challenges.

I do not know what each of my many nurses thinks, of course, but there's such a clear split (and it's entirely consistent, no nurse has yet demonstrated a change in behaviour to date) that it seems to carry some meaning.

My 'PRN' (from the Latin pro re nata, 'when necessary') painkiller is charted up by my doctor as being 15-17mls PRN (it's a liquid suspension) and the nurses bring it to me in a 20 ml syringe, all ready for sending down my tube.  Exactly why it's been charted as 15-17mls remains a mystery, but there it is.  Not like there's a massive difference.  Those 2 mls though are over half a centimetre apart, two whole big lines on the side of the barrel, and it's easy to be very, very accurate with this stuff.  So here's the thing - it's always either exactly 15ml, or exactly 17mls.  Never 16, or just under 17, or a bee's dick more than 15, nor above or below the limits.

Now it surely says something that I think I have worked out that those who bring me the larger doses seem in general to more enjoy the act of giving, to be less worried about my pain, to be more accepting and trusting of me to self-manage my situation than those who bring the 15ml doses.  Totally subjective, and skewed by all manner of worldview preconditions I bring to the game, no doubt. And there's another layer.  With these heavier and potentially abusable drugs safety protocols mean that two nurses have to do the sourcing and delivery, checking my name band with my record, making sure the right patient gets the right dose etc etc.  And who those nurses turn out to be is pretty much random - 'my' nurse (usually) for the shift who answers my call bell, and whoever else has a spare minute (haha, those who work in hospitals know full well there's hardly ever such a thing).  And a rule has developed, a Law Of Nature as it were: If one of the nurses is a '17ml' nurse, the dose will be 17mls. It will only be a 15ml dose if neither nurse is ordinarily a 17ml nurse.  So the larger-dosers tend to be dominant actors, doing the preparing and being the one to hand me the syringe.

So there are two kinds of nurses - those who bring me the minimum charted dose, and those who bring the maximum.  It occurs that I could always ask for one or the other and see what happens, but I'm far more interested in seeing how it goes when I don't.  And the pain is OK. So is my sacramental progress, just btw.

Once, I would have asked them, the nurses I mean, interestedly and in a way so as not to raise any hackles, but now ... well I suppose it's a part-testament to the times I am living that I vastly prefer to leave it as something to toy with only, to allow there to be some great deep meaning and to not care whether I get it or not.  It's like having come full-circle with philosophy, in a way - I reached a while back the full understanding that nothing was ever able to be known (including the supposed fact of my own existence) with certainty, hence, philosophy as a way to get at the 'meaning of life' is hopelessly inadequate.  Now, it's become a fun pastime again.  Now there is nothing resting on the outcome, I guess.

Everything is increasingly freighted with vast and deep potential significance, yet totally random and unfathomable simultaneously.  Without the counterweight of certain mortality, I doubt we could stand the perspective for long. Like Douglas Adams' Infinite Perspective Vortex. powered by nothing deeper than a small piece of fairy cake :-)

Just a thought.