This is a probe I’ve written towards a longer tale on the same theme – my liver story.
Two perspectives: the patient and the beloved-carer. Of course we’re talking about the same subject: my cancer and transplant and all that has gone and goes with it. But how diverse are our viewpoints. Much of my memory needs to be prompted by Franci’s recollection of events and emotions, but often what emerges is again a pair of different pictures, of the same theme but from a different angle . That makes all the difference.So we’ve decided to write this tale collectively, to underline how differently reality can be.
2012 – if ever there was a year of living dangerously for me, this has been the ultimate, and now 12 months one I can finally see the light of full recovery. Well, although even to me it (almost) rationally seems a tad ludicrous now with the memory of where I’ve been in some sort of perspective, still I can say that I never really doubted that it would be so. And it is indeed. Having just begun on the ‘final’ big step of taking the Interferon to once and for all rid myself of the Hep C, some – I can sense the slight scepticism of many – would say that I am jumping the gun a tad.
Perhaps that I ‘should not’ be so utterly assured of something which has a percentual success rate of only 70%, and perhaps closer to 50% in the case of a transplant survivor. Yet how can I reject my sense of certainty, and why should I anyway. To me it is just as logical to reckon myself to be close enough to 100% as to be acadamic. Why would I doubt it, in the face of so many who thought that I would not pull through after the op, or even before it, when I was sure. And why should I not assume that, having sailed through these last 4 months so spectacularly that even the same sceptics have openly and delightely acknowledged my extraordinary feat, that my expectancy is of course near enough to also be a certainty?!
This has been a truly life-changing experience; life can never be quite the same after skating so close to death, and nor should it. Lest we forget! In the smallest nutshell, I choose to live life awake and conscious, aware that life is always hanging on a thin thread that could be broken at any time.
Much of my memory is blurred and confused, since I was so weak and out of it for so long. These past couple of weeks have been the first time since January 5 that I’ve been able to coherently express myself, to be able write it down and really talk about it. That’s a long stretch, and the story
is not finished yet, though the final outcome is for me certain. Time is always a tricky equation.
How can he be so indifferent about something so fundamental to life itself? Sometimes I feel so angry about it, that he can so easily put OUR life on hold. MY life too, since now we are so much locked into this together. I didn’t choose to be a health carer for my beloved, It’s all very well to say ‘Until death do us part’, but that’s not to mean that we should treat ourselves so badly and then expect our partner to suffer the consequences too.
Of course I love him so and would find it almost impossibly hard to turn my back on him and walk away, but the stronzo didn’t let me know just how serious his situation might have been. Virtually dismissed it without a thought instead of letting me be a part of the real truth, giving me a chance to make some input.
Mind you, I know what his reaction would have been if I had dared to push him to do something about it, like going to a specialist as Christoph suggested two or three years ago. I would have been declared an alarmist, and not to make a big thing out of it, since he felt so good. Did he really feel so good anyway? Or was he just doing his old ‘jolly john’ routine of being so damn positive about everything. How could he have missed the signs. Pride, stubborn pride, along with his ruddy optimism, putting a blanket over whatever isn’t as he’d want it to be. Playing like a stupid ostrich with his head in the sand, refusing to see. Even when it’s a monster that might kill you.
He always prides himself on his years and years of practising daily yoga. Has always said how sensitive it makes him to changes that are happening in his body. Oh yes sir, so so sensitive. So flipping sensitive that a cancer can actually establish itself in one of his most important organs and begin to eat it away. So sensitive that he can carry hepatitis C for maybe thirty years without knowing it. Long enough for cirrhosis to establish itself, which is supposed to be something that is incurable except by transplanting the liver when it begins to fail. Oh what a sensitive man!
Okay, so maybe he didn’t have any symptons that he could have been expected to notice. What if he had gone to a specialist when the liver signs were actually first discovered. Just suppose there was really no cancer at that stage, that it hadn’t yet progressed so far as to trigger the cancer cells in the first place, that they hadn’t begun to multiply themselves into a growing carcinogenic lump that began to send out little satelites.
REAL AND IMAGINED
Sorting out fact from fiction, memories from imagining, fantasy from reality, is a pretty tricky exercise, and of course all truth is only relative, to the relaters opinion, point of view, emphasis. Stiil, it feels like a productive project that may thow some light – however difuse – on the theme of serious illness.
Right from the start there was always the controversial question of approach to take for my situation. When the first alarm bells sounded in my peer group there was an almost overwhelming outpouring of suggestions, inspirations and advice on which ‘alternative’ approach to healing myself in preference to resorting to ‘conventional’ medicine. All absolutely from the heart and with the best of intentions, full of anecdotes to support them.
I’ve always been inclined to follow my nose and more specifically to trust to gut feelings and personal experience. I haven’t actually met anybody who can avow that they have cured themselves through any of these approaches and have witnessed people sliding inexorably towards death or utter debilitation through pursuing miracle cures.
I can certainly adhere to the idea that we precipitate events in our lives, but often our karmic sources are very complex and to fix on particular experiences in our lives that have led directly to this new moment of awakening, or sickening, seems a bit simplistic to me, and plausibly inaccurate. I can also accept that the source of my Hep comes from specific events and ‘decisions’ or lackthereof in the past: youthful games and limit-pushing coloured with fear and daring; extremely dubious hygenic situations in one or two dental clinics in India; a number of innoculations unwisely accepted in equally dubious public health institutions, also in that wonderful/terrible country,
It wasn’t that I eschewed the alternatives: the power of positive thinking comes very naturally to me, being from a long lineage of optimists and accepter of our destiny as well as go-getters, each with our individual approaches; I’ve lived long enough what’s considered an eccentric or ‘alternative’ life, though admittedly I’ve often skated around the edges, not quite plunging into lots of things to explore their depths – in spite of my superficiality it’s not been a lack of exposure.
For quite a few months I religiously pursued the Miracle Mineral Solution of Jim Hubble, following it to a tee, and only let it go for the time being when there was not the slightest improvement in my measures; on the contrary actually, though I attribute it not in the least to MMS. Finally it was the odious repetition of swallowing these glasses of disgusting ‘swimming pool solution’ that encouraged me to stop. P’raps I’ll give it another go. My diet is generally good, though I admit that I’m not exactly fanatical, allowing temptation to sometimes colour my intake. Still, very little of the utter no-nos like alcohol or mobs of fatty foods. My appetite is so good though.
What contributed too, to my decision to follow this ‘conventional’ path was that my prime advisors – Christoph and Jayam – have both explored extensively, a lot of alternative healing techniques, including diving into them themselves to understand; they still use them where they feel convinced there is worth. And they feel they have dismissed some on the basis of personal experience.
It was last December that I finally had my situation put into the harsh perspective of fact. I had blood tests, and sonography, to see just what was going on To see if there really might be something to take notice of.
“John,” Christoph regarded me with a serious expression that told beyond words what the results of my tests had been. “You’ve got cancer, of the liver, and you don’t have any choice but to do something about it fast, or it could kill you.”
No beating about the bush, bless him, nor pretending to soften a blow that had to be reckoned with as clearly as possible. Anyway, while I can’t say that I actually knew that I had cancer, I was well enough aware that when we moved on to the stage of intensive tests, that old Jimmy Dancer was a highly likely outcome.
Beats me why I hadn’t taken the advice of two or three years earlier to take my Hep C seriously and see a hepatologist. Could that window of time, which I so stubbonly or naively ignored, have been the difference between cancer and no cancer? How much difference might it have made? Was the cyrrhosis already well embedded, the cancer inevitable? Or did I have a big chance then of avoiding all the mega-drama, the journey to the edge of my continued existence, maybe still to need the Interferon, but not the knife? Well, they’re all questions, but they have no definitive answers, and anyway, it’s neither here nor there. Way beyond the questions. It’s all happened, and will for a wee while yet.
Hmmm, can’t get clearer than that. No options, from his point of view. Or mine either, when he referred me to Prof. Runkel in the Villingen Krankenhaus. Actually I was ready for whatever was on offer, but I still had a shadow of gulp when he told me that he could operate in less than a month’s time, on January 5.
He didn’t want to wait any longer, since I had one reasonable-sized tumour of 38mm, plus two or three satellites, and though they were all located in the 5th ‘chamber’ of the liver, the larger one was absolutely on the border joining the 8th, and they could only be sure – or at least reasonably so – once they had opened me up and gone inside. So, the 5th of January it would be, with book-in time in the morning of the 4th. Merry Christmas, old boy!
The girls were gently told what the situation was, not playing up the risk factor. Nor leaving it out. They have been through quite a lot in their short lives, and we have always done our best to trust them with the truth, to believe that with love to support them, they would be able to face whatever life through in their paths. Who are we to play arbitors of truth; once we start on a path of lies or untruths, where does it stop, how do we have the capacity to adjudicate what is ‘suitable’ truth, and what is ‘unsuitable’ truth for them to know?
I don’t have any sort of morbid fear of death, including facing my own. But on the other hand, I love life passionately with all its twists and turns and passions and challenges, and specifically, I have two wonderful daughters who are too young to be robbed of their papa when we still have so much to learn and enjoy with each other. And a most wonderful challenging life ahead with me with my glorious Francigala. That’s a lot to live for.
And I believed that I was fast approaching a threshold, perhaps (certainly, avoiding the negative possibilities?) having not taken seriously enough Christoph’s advice to seek a liver specialist’s advice to know the ‘scientific’ point of view. I let time drag for a couple of years. Maybe it was within this time frame that the cancer actually developed, though it can never be confirmed, and perhaps too, it was slowly biding its time growing inexcorably.
Maybe too it was these stressful years of relationship with Jayam, and to a lesser but no less real, times with Franci, that helped matters along to this point. Stress is the pits, and clinically proven to be a part of the aggressive cancer development syndrome that recently seems to have reached something like an epidemic level in our society. Interesting, I note or kid myself, that up to this point, in my own counterculture back in Oz, from whence my lifestyle took root and began to develop, that until now the incidence of cancer remains preciously low, in that world where there is undeniably less stress.
What rotten luck, to pick up such an awful disease. Rotten maybe, luck almost certainly not. Every saint has a past, every sinner has a future, dear Oscar has said. Well, I ain’t the first, nor particularly the second, but maybe we all slide back and forth along the scale in our lives, until we learn – most of all – to be honest with ourselves.
Now, in the light of my undeniable experience, it comes out that more than one of us from the ‘old tribe’, apart from me, has been living with Hep C for some long time. Fancy that! Rob Emanual, Kerrilyn are the two that have ‘come out’ with me, since learning of my case. And Peter Hall too, of course, as a barely disguised intimation some time back.
As it turns out it seems, probably near enough to all of us who shared our lives and needles so freely, earnt the ‘badge’ of Hep for our troubles, or lack of them. How come we didn’t share that info – of our infection – as openly and willingly as we had shared our needles?
A bit of harmless fun. That’s all it was; fun yes, but far from harmless nevertheless. We didn’t admit it at the time, but of course we all knew of the risks, even thirty or whatever years before (since the starting point is completely obscure, only guessable; funny that the date suggested points so accurately to those times of tacky drug games). Although AIDs hadn’t hit the Big Time by then, we were all aware of the implication of blood-blood transfer of Hepatitis C and other more exotic names that could do us deadly harm.
But what the heck, we were all friends in dare-devilry and wild larks, young and impregnable, if not exactly immortal. Bravado always won the day, and embarrassment to waver from the tribal ways. Anyone truly brave would slide quietly away without murmur or fuss, while the rest us would observe the departure quietly, perhaps be tweeked a little in our awareness of the reason she or he left, and say nothing.
I’ve heard statistics suggesting only one in hundred actually get Hep C from needles, but we were almost surely among that ‘one’, and with my tale of drama now locked into those tacky evenings of passing around the needle as easily though not so often as passing around the joint, it seems that most of us picked up the H.
If I’d been alone in the infection, of course then I might perhaps have clung to another theory longer, shucked off the blame elsewhere. Still not exactly innocent, but at least acceptably young to excuse myself with finger (firmly, waveringly?) pointed at unfastidious dental surgeries in India, or dubious hygiene practises in government immunisation offices along the way. But, let’s face it, I was neither alone, nor innocent.
Surely I was far from the only one who didn’t find out for 27 years or whatever. Naïve is hardly the word; blind ignorance; ongoing cowardice to face facts; less intimacy between us as I felt confirmed so emphatically – remember those times, John Button, when I took yet another big toke, or knives, or whatever other means we used to get more out-of-it even when that was an impossibility short of complete unconsciousness. Oh boy, truth must come out. How much shame – or embarrassment, or shyness, or whatever it might be called – do we carry around with us, that silences our tongues in denial or secrecy when we know what we all should know?
Well I ‘got it’ anyway, didn’t I? And the wonderful German health system managed to find a slot for me pronto to sharpen the knives and get rid of – or at least try very dilligently – to do so. The morning of the 4th eased around after a low-key ‘festive’ season. The family’s next door neighbour in the Stadtmitte delivered me to the Villingenklinik.
I don’t recall now, how such an impersonal start to this drama evolved, but I daresay I played down the seriousness enough to convince others as well that it was no big deal and that I was going to breeze through it all just so, and soon enough be ‘back to normal’. Ha ha, pull the other leg, he sez now with hindsight and a year of rather deeper experience.
Terrified? Depressed? Sleepless with worry? Honestly, I can’t even pretend that any of those qualities accompanied me in there that morning. Not to say I hadn’t had sobering contemplation about it all, but somehow I have inherited from goodness knows where, a fortunate attitude of accepting most of those fortunes that enter my life, darkly or lightly.
I’m pretty sure that it’s not something that one can simply conjure up on demand and need. And it sure has nothing to do with bravery. That was definitely proven with my tigersnake bite so long ago. Hmmm, on consideration now, there were a few events around that same time, that in retrospect seemed almost to be demanding a rise in consciousness and self-honesty on my part. At least to put my boots on when working in the forest, instead of padding around bare-footed on land where I’ve actually seen at least three or four of the six deadliest snakes on the planet.
Anyway, to cut that story short, I was bitten, badly and with an extremely high toxin level. Arriving at that point, I had certainly been ‘respectful’ enough of all serpents that every time I came across them, my first reaction had been a heart-stopping fear. Yet having been bitten by one, I honestly was not afraid, was completely surrendered to the circumstance, whose potential I was totally aware of. I did not feel the presence of death, as much as I knew I had been bitten by a deadly dangerous snake.
Perhaps we really do ‘hear the owl call our name’ as Margaret Craven titled her wonderful little book. Death was not with me, then or this time. I was aware of the clinical details of my condition, which at more than one time was surely as precarious as possible without Death interceding, but fearless because IT was not there. That’s all; no courage involved. Not even positive thinking. We can’t ‘do’ it; it either happens, or doesn’t.
I was wheeled off to the operating theatre early on Thursday (significant days for me; also the day of my birth) the 5th of January. I had no notion that it would only be the first of a series of journeys to operating theatres for me in 2012. Prescience would not have made any difference anyway.
Success! Or was it?! First report was that Prof Runkel had managed to cut it all out. All the ‘bad bits’. I had not idea one way or other for the first halfday. Followed by emerging to vague consciousness, before slipping away to sleep the night away. Ah, that’s done, without any big drama. Just as I’d anticipated, ‘felt’.
Then, the next day, from one of the nurses who seems to have some authority, comes out with the rather unsettling notion that perhaps it wasn’t entirely satisfactory. Whatever that could mean. Hmmm, where’s the ubiquitous German straight-to-the-point then, if one says one thing, and another says something significantly different. What’s a poor boy to think?
Anyway, the confusion was confronted, and it turns out that the nurse has it all wrong. Uh, how can she get it so wrong as to be apparently way different than the first version I was given? A bit of a worry really; not just who’s to be believed and who’s not, but the whole notion of transparency ruffles itself in agitation. Are hospital protocols somehow at work. A fellow could become quite perplexed and suspicious about what’s what, and what’s not!
I tarry a while – three days – in Intensive Care, where I’m constantly monitored and pumped up with pills. Ha, not for one moment entertaining the possibility that I might be tossing them back at eighteen per day more than a year from now. Delivered by none other than dear Sandra’s sister Andrea, who just happens to be appointed to care for me. Familiarity is a warm companion, and if it isn’t there already, it bodes well to create it for yourself. Anyway, these ‘lollies’ seem to perform their allotted functions as intended, and I am duly wheeled down to the ward.
I’m treated so well, almost royally. I mean, although I’m in a public ward now, with two other men to share ‘my’ space with. The staff – doctors, nurses, orderlies, cleaning and kitchen staff – are so touchingly warm and sunny, maybe especially with me though. It’s as if I’m some sort of exotic bird or similar. Not just the outrageous eyebrows that are admittedly scarcely human. Or even that I’m from the celebrated (and over-rated as some sort of antipodean Shangri-la) Land Downunder that everyone thinks is SO good. More than the incredulity that someone from ‘down there’ should actually choose to live in Germany in preference. No, more than that, it seems that they are simply not accustomed to the aimiable informality that we odd Ozlings apparently exude. Perhaps I could hone it down from ‘we’ to ‘me’, but that seems less than honest; I come from a land where most people surely do try to make the most of life. Or am I propagating another myth, as dear mum has assured me. ‘It’s not the easy-going land you left. People ARE more selfish and ego-ish, care less about the other person and the effect of one’s behaviour outside of oneself. Don’t think you’d be returning to ‘that’ land.
Whatever, it works a treat to be treated so joyfully by these wonderful people. I know even so early as this, that attitude becomes a cycle that feeds on itself. The opposite but same principled grumpy or whingey feeds grumpy and whingey. But how can any of these patients be anything but appreciative for the care and concern and good-humour of everyone who’s involved with taking care of we unwells. It’s simply heroic, magnificent. I feel so grateful for it, and don’t fall short in expressing that gratitude. And that feeds a response which of course leads to being treated even more exceptionally. Could be a recipe for life, eh?
Not that my room is so glum anyway, being full of sunshine and a glorious vista out over the trees to the far hills where I see the swelling of the old Celtic burial mound. I remember walking there with my very-pregnant-with-
Aruna Jayam, still cold in spite of it being May, in what proved to be the birth catalyst. And wee Aruna arrived in this same hospital in the early morning, flipflop into the arms of the waiting midwife nurse as Jayam squatted between my knees, arms resting on my thighs as I sat on the big blue rubber ball. So not a bad place to be, with gentle warm memories to accompany me.
I have good company, particularly with one delightful soul, with whom I plan to go sailing in Spain, when all this business is past. A year later and I’m still passing, and I wonder, hoping, that he is fully recovered by now, and trimming the sails again, feeling the sea-breeze burning his cheeks. Oh well, good things are well worth waiting for, after this long mega-drama.
I do my best to hasten the recouperation process, tenderly going through the motions of some (very) basic yoga asanas, and walking the wards, building as soon as possible to stairs. Ah, these will become a very significant ritual for me, counting off my progress towards relative good health by the number of stairs I’m able to climb before exhaustion gets the better of me.
Can’t remember if Franci was there, or the discomfort between her and Jayam was rolling at that stage.
After just a couple of days, when I had returned to the warda phone call arrived completely out of the blue. It was Ton Scholte, unseen for 12 or more years, unresponsive to my occasional attempts to maintain contact. Gone, pfffft. Now suddenly back again!
“John, Ton Scholte! I have heard from Holly about your liver and I was so shocked. To think that I have done nothing at all to respond to your efforts to keep our friendship alive. And now it occurs to me that you could die and I would be left not seeing you, but knowing this fact. I’m coming tomorrow.”
And dear Ton did just that, rising at six in the morning up there in wintery Holland, and driving 700kms down to see his old sick friend. Who was pretty well patched up after receiving a 35cm scar across his ole belly. But not so well patched as it turned out.
I was still a tad weak just a week or so after the big slash, but well enough to tenderly ease myself over to the cafe to enjoy a lekker kuchen with my friend, rather transformed himself in the years since we’d last rubbed noses.
Y’see, Ton was a businessman, but not your conventional dark-suited variety. He dealt in a rather unconventional product. Weed! Did it very well too, but the last time we’d parted company had been shortly after spending the night in the Hardenberg lockup, following the arrival of a squad of the contstabulary to look into his nefarious business affairs.
Not that they were bothered by the product, which was perfectly organised and moreorless legal. Naughty Ton though, had ‘forgotten’ to pay taxes on his considerable income from its sales. Actually, he got away with it that time with no more than a slap on the wrist. But since he didn’t heed that warning, eventually he was forced to reconsider his multiple errors over a period of several months in a secure institution of her Madge the Queen. They have a Madge in Holland too, you see.
Apparently he learnt his lesson rather significantly, and during his time in the clink, he set out on a study of Theology, graduating some time after his incarceration. So when Ton arrived – with a most beautiful hat to cover my bald pate with, and a warm red blanket for the rest of my bod – he was not the jolly Ton Dope Dealer, but jolly Ton Lay Preacher!
And what a delightful transformation it was. Still the delightful warm and jovial fellow, but infinitely more reflective, gentle and, yes, spiritual. Beautiful medicine for my healing. Only problem that surfaced, after an hour or so in animated conversation and due silences, was my ruddy slash, which began leaking like a sieve in the cafe. Not that I let it disturb our intimacy, since after an hour or so, I was too exhausted to stay sitting, wet or otherwise. Finding my limits, and learning not to push them. And suffer the consequences if I do! The stains from that leakage would never be removed, remaining forever as a reminder of this time, and the colour of my belly juices. It would make a very fine dye stuff, if your tastes are inspired by hepatic yellow-orange. Not so different from saffron really.
Now there seems to be a hiatus period, when I can again explore alternatives, hopefully for long enough to make some headway before the decision with more drastic approaches such as Interferon need to be taken. But anyway, to go for it more wholeheartedly to ensure there is a strengthening of my liver, metabolism and body generally to offset the negative effects of such chemicals.
One small step after the other. Small and painful steps, but enough to encourage me on, raise my determination to be really free and fit again, to take that Big Silver Bird to the great south land at last. What a circuitous route to take get there. Cancer, transplant, recovery. A future that was so nearly not to be.
Not that my mortality was ever in question; Death just wasn’t there, for me, though it turns out that I was just a hair’s width away from that fatal sickle. Not once, or even twice, but rather many times, and sometimes for weeks on end, when something, a small aberration in my chemistry perhaps, might have triggered the impulse to tip me off the scale, topple me off my perch. Christoff certainly hid nothing from me, nor Jayam, whose anxiety I was able to ignorantly dismiss as ‘typical alarmism’. What you don’t want to hear, ah, gloss over it and move on.
In hindsight, I can now bravely do just that. And it’s not that I could have lessened the chances at that late stage anyway. Earlier, oh yes, much earlier. That I might actually die just barely occurred except as a faint peripheral blur, a vague possibility quite vague enough to pass right on by.
In Donaueschingen there was the screaming whinger, who finally did his dash with me once and for all the night I woke to find he’d snaffled my computer from the bedside table and was dangling it by the screen a meter or so above the very hard and hazardous floor.
I wrenched it from him and screamed blue murder at him, threatening to pummel him senseless if he dared to touch it again. One berzerker menacing another. That was just the final straw when I made the ultimatum that he had to go. A night or two earlier I’d been the one to go; once again he’d woken me – and anyone else unfortunate enough to be within hearing distance and foolish or unlucky enough not to have earplugs; I had the earplugs and good ones indeed, but was blighted as his nearest neighbour, with his megadecibel hollering for the nightnurse to satisfy whatever he’d imagined to be troubling him.
That night I just took my bedding in the middle of the night and tossed myself on an available mobile stretcher parked down a corridor way out of harm’s way, and earshot of ranting madmen. Nobody saw me go or pass, since it was the dead of night, and I slept restlessly for a couple of hours before a frustrated night orderly decided to take out his pittance of authority on me by insisting that I couldn’t sleep there.
“But I am sleeping here, or at least was until you disturbed me without reason,” I remonstrated.
“But if there’s an emergency, we might need it.” He should have used the pronoun ‘them’ since my stretcher was only one of several. I guess one never knows when a catastrophe precipitates an avalance of patients arriving in the dead of night to the Innere Medizin wards.
I offered to move should the threatened catastrophe eventuate, but he wouldn’t be put off. He’d found a victim in me at last towards the end of an awful evening of night shift when he’d probably been walked on. Can’t blame a bloke in the face of a wretched scapegoat like myself. I grumbled volubly and bundled up my bedding, swayed my way back to the ward, where my rabid neighbour had mercifully fallen into a silent stupor.
The other memorable horror bedfellow was in one of my many addresses of Tuebingen Klinik. He was a miserable bastard too, and another whinger to boot. I’d just objected to his complaining about the blessed nursing staff and was passing by his bed when he lunged at me and grabbed me by the pajamas. Make my day, scumbag! I grabbed him by the arm and fisted his shoulder. What a brute, grappling with another brute. Oh yay, Button at his mildest Best.
I don’t know what the chemicals I was running on after the cancer cut in January, but when I came out of hospital a few weeks later, I was not in good shape muscle-wise. The pinnacle, though, was the Night of the Cramps – 7 hours of agony, my calf muscles in particular constantly cramping up. I’ve known cramps before, from my hallowed years of roosting the leather through the tall pine, as one sportless friend described football; the aerial ping pong variety. And basketball and athletics and all the rest of the sweating and straining I got off on as a callow youth. But nothing to compare with this; never more than a passing spasm of a minute or so.
And this was literally 7 hours of virtually non-stop muscular attack, doing all I could to find a way through the pain, gentling my body through whatever slight movements might ease the pain, gobbling anti-cramping pills and drinks. No amount of magnesium helped more than fleetingly, with poor Jayam finally exhausted from trying all she was capable of, quite a few hours on. She was desparate, ready to pack me off to the hospital, with me resisting such an action vehemently, until she eventually called Tobi who arrived with his brother, who’d been a krankenpfleger sometime in the past. All working on me together, they were finally able to stablise me, just when she was at wits end and determined to pack me off to the hospital after all, in spite of my adamance. Already I had developed my healthy (?) resistance to the places and had not the slighttest wish to be a moment longer than absolutely necessary.
Ha, if only I’d had an inkling of what was in store for me in the many months to follow.
Mind you, by the time I was so deeply entwined in this cancer and failing liver phase, I was pretty far out of it and in spite of my derangement, very determined that I would survive to thrive again. Hmm, to be more accurate, determination had little to do with it, but rather an absolute certainty that I wasn’t going anywhere the other side of eternity. Nothing to do with courage or spirit, or even positive thinking. It was just a complete surrender to whatever was going to happen along the way. Just as well too, since there was absolutely nothing I could do about it.
All the same, with two young daughters to think of as completely abandoned by their papa after managing to tolerate for so long the unwanted separation, was out of the question. I’m not sure how I managed to create the fantasy, but I was so convinced one day that I’d had the operation, that everything went well, and that it was all over. The healing could begin. I actually phoned Aruna to break the good news and told her. It was some time later that Franci set me right and I had to re-phone poor Aruna and tell that I’d got it very badly wrong!
What these two dear young ones have gone through. I always have felt that, apart from pure and unconditional love, the most important offering to make to them was the capacity to be flexible. Well I sure have put them to the test on that one. Matthias and Annette visited Jayam during one of my timelessly long hospital soujourns , and were shocked when Shanti declared:
“How terrible it would be, to be so young without a papa.”
Don’t ever think that that sunshine blossom is not very aware of reality. Aruna of course, was quieter about such a possibility (“I’m OK”, being her standard response, whether ecstasy or suffering lay under the facade of implaccability, to protect herself or others). How blessed it is to be loved so totally by one’s small divine gifts. I couldn’t let them down, however painlessly I can accept my Fate to live or to die.
But they did so suffer, worrying their beautiful selves if their beloved papa was going to live or die. I didn’t make matters any easier either in my fantastic illusions: one day I must have dreamed of the operation and immediately rang Aruna:
“It’s all over and I’m going to be okay again!”
The operation was still days away. And another day I said to them in a moment of complete honesty: “I’m really so sick.”
Clinically, I had no idea how close I was; all my near and dear ones were clear as light about it, but the notion was not on my horizon. That I would live was beyond doubt.
ANGER AND SURRENDER
It’s so frustrating to have this hair-trigger reactivity. I’m a pretty spontaneous fellow at the best of times, but can usually contain myself sufficiently to remain civil, but during this adventure all that has blown to the wind and until just this last week I could bite anyone’s head off at the drop of a hat. Especially though of course, the choisest head was the closest, and it must have taken all her will – above all, her love – for dear Franci to shuck if off and stay so close, so faithful to my needs and situation.
It’s appalling to feel this welling up of anger that deep inside one knows is absolutely inappropriate, and to be able to do nothing to stop it, like badly soured champagne whose cork has been loosened to the point of no return. It must explode and the rancid wine out. In this case whine or much worse, a spitting-out of venom and contrariness that will not court any compromise.
More than close though, this adventure has sealed our relationship forever, fused like one unit. May I never have to eat these words. The sense of complete surrender to our destinies has merged with complete surrender to each other. Oh what grace, to have been gifted such a woman, who has so tenderly taken care of all my needs: with her presence as often as she could; chasing up the doctors and bureaucrats to get the best possible outcome; communicated endlessly with all our near and dears; worked her fingers to the bone doing whatever came along black and shitty – gardening and house cleaning and working her fingers to the bone in a pizza parlour scrubbing and scouring for a pittance – just to keep our pitiful finances bobbing along rather than sinking further into the mire or endlessly sucking mum and dad’s savings to the ground; and not the least, swallowed her pride and accepted my appalling humour and offensive demands.
What more could anyone ask for? Seemed only perfect that we should finally round us off by wedding without any more procrastination. So birthday, new liver, and marriage, all celebrated in hospital. Nobody could accuse us of conventionality. Each of them especially significant: last birthday before this new life, and survival; a liver 19 years younger than the rest of me, donated by a 39 year old who died and so allowed me to live; and finally seeing and merging with my companion for Life. Phew!
It’s almost impossible for me to distinguish between dreams and reality; they fuse together and I can’t pry them apart without outside (ie. mostly Franci) help. For some days I was convinced that I was somehow in hospital in Pakistan, otherwise in Oz. There was some sort of connection with Tubingen, including miraculously only a two hour drive from the Paki hospital, but I demanded that Franci make my booking to Tassie so that I could get down there as soon as possible once released. Visitors came and loved and left, and I was left with only the vaguest impression of their presence. Drifting between awake and asleep, real and unreal, dream and imagining and desire and belief.
Talking of miracles: a few points to ponder. it comes out now that I was hanging on the edge of life more than I realised, tho Sybille and the docs in this hospital hid nothing from me. I was so out of it anyway. My liver had packed it in so badly that it was either transplant or death, and with the transplant (clearly the only choice since life is too sweet at this tender age) there was around a 50% survival rate given my dire condition! There was mention today on the telly news, that in Germany 3 people ‘on the list’ die every single day. Hell, I wasn’t even on the List! Through the intervention of dear Prof Walter, and Christoph and Sybille, though – and above all, beloved Franci – and their pushing for me, I got into Tuebingen Uni Klinik, well-known for it’s transplant capacity. They took my case on heartfully too, and I somehow went to the top as an exceptional circumstances case. I still really don’t know how it all happened, considering that every day in Germany, 3 people die for a lack of suitable organs. If manifestation had anything to do with it, I was right on tune. After waiting for less than two weeks, in the late afternoon of June 14 came the news ‘”we operate in two hours time”. Drama queen stuff, again (more later on divorcing from this stale pattern)! So, hospital for 7 of the last 8 months, with the light only starting to really shine now.
Well actually it took quite a bit longer before they took to me with the scalpel, but preparations began right away. No time to think or contemplate. Dive in at the deep end. And anyway, as I’ve said, I was off with the fairies, even to the point that I started seeing stars! Wheeling me off to the Op theatre, the whole world was full of little stars, twinkling all over me., dancing the melody of the universe, or at least my wee section of it. I asked Franci, and the nurses and orderlies nearby, if they could see them; the latter did their best to keep straight faces, but Franci did her best to see them with me, but honestly couldn’t and wouldn’t demean me with lies, and just encouraged me to keep on manifesting! Before I was finally wheeled into the operating theatre, of course there was a little more drama to unfold.
The anaesthetist was about to begin transporting me off to blissland when the news came that the plane, with ‘my’ liver flip-flopping about in it, was unable to land at Stuttgart due to some unforeseen paperwork problems regarding the late hour of landing, or other bureaucratic rigmarole. So, I had to be trollied off to a side room to bide my time. The stars still kept me company with Franci.
After an hour or so, my ‘new’ liver finally arrived. Before I was taken into the theatre though, I insisted on the need to sing a song. It had to be the Gayatri Mantra. Everyone was stunned and somehow a bit embarrassed, but also appreciative. Nobody in their care had ever sung at such a moment. Certainly not the Gayatri Mantra either. I kissed my beloved before crossing the threshold, while she was sidelined to a nearby room to wait out the agony.
I have no recall of the op beyond the anaesthetic preliminaries. I was exhausted anyway, and drifted away before they’d even administered the full narcosis. The operation took close to eight hours, and was apparently a very tricky one: a very big bouncy liver to squeeze in, buckets of blood (thirteen litres actually – we have around six in our whole body, so they were really pumping it around), and other technical trickery to be overcome in the process. Oh but they did it well for me.
Big question then: if I was 50/50 to live or die, and quite likely clinically somewhat less, then what difference might all the love that flowed my way these last months have made? Could be that all my loved ones from all corners near and far, actually ultimately saved my life`? With their love and prayers and rituals and good wishes. Maybe that’s delusion or wishful thinking, but what if it’s not; can anyone afford to deny the possibility? Let’s just ponder it anyway, eh.
I’ve cried so many tears these last many months, not from pain or fear or desparation, but from pure gratitude for all that has gone into keeping this glorious life going, from so many directions: the incredible competence and care and heart that the German health system has heaped on me; the family nobody could hope for that I have blessedly inherited, supporting me so unconditionally heartfully, materially, wholly; my beloved Franci crossing every ‘t’, dotting every ‘I’, ensuring that every care and consideration was taken, and then some; and not least of all from my dear friends all over the world, none less than the next, who have all carried me through each step of this extraordinary experience on the shoulders of their love and prayers. Tears that only start to express my gratitude, but better than words or anything else.
Wow, what I have learnt these past 8 months, about me, about all that I have done and might still do and accept, and the clarity that has pushed it’s way through the fog of my madness. I really thought for ages that I was in Pakistan! Had every intention to phone Andy at ACTED and suggest that he visit, that perhaps I could give a talk and push some more work through. It wasn’t actually a hospital their near Islamabad, but more like a youth hostel or a christian meeting centre. We all slept in a very spartan hall or dormitory, on fairly uncomfortable camp stretchers that were outrageously difficult to extract myself from when I needed to piss or shit. I gave a Permaculture project talk to a meeting of youth at one stage. The centre had a strange sort of gymnasium with all sorts of aparatus for toning the body, and an even odder system for moving about using little capsules on rails that moved smoothly around the walls and hung from the ceiling. Hmm, I don’t know where that one came from, nor what it respresented in the murky caverns of my raving subconscious.
Having realised eventually that actually I wasn’t in Islamabad, which indeed was not an hour or so’s drive from Tuebingen, I finally understood, that in fact I was in a small hospital on the Gold Coast, still somehow connected with Tuebingen, by some of the nurses and doctors! I didn’t even bother to try working that one out, but concentrated my efforts to convince Franci to book me a ticket immediately to fly me down to Tassie to be with my folks, since obviously they’d be delighted to know that I was suddenly back in Oz and just a few hours flying away. Couldn’t work out what the problem could be when I began demanding that the taxi be ready to take me to the airport pronto and there seemed some reluctance to fulfil my request. I don’t know where Franci had disappeared to; seems you can’t trust anyone these days! Another evening we took a long journey to somewhere in northern Siberia, perhaps by a luxurious train or sea-going vessel. Two actually, and the whole Kalchthaler clan was on the other one, along with various of their well-heeled coterie.
What these wonderful people who are the hospital personnel, have to put up with in the course of their work. Apart from the odd bod weirdos like me (mercifully not so common perhaps), worse still are the recalcitrant moaners cum screamers, like the old fart at Donaueschingen,(apart from his disturbing carry-ons which ran right through the night sometime, I actually woke one night to find him with my computer held in one shaky hand, held a metre or so above the hard floor – I saw red), who yell and moan and demand. Then there’s the persistent whingers who think they’re so hard done by, not only being ill, but having to tolerate these terrible nurses, doctors and carers who are so obviously conspiring against them.
For me they’re angels, almost without exception (and after all, we’re all permitted our off-days) the way they not only so competently and dilligently perform their tasks, but do it with such a light-hearted air. I have to say that I generally make it very easy for them, doing all that I can myself to leave them in peace, and engaging them in what seem to be stimulating conversations (or monologues!) at every opportunity.
Apparently not unpleasantly, since they almost invariably tarry a little, and newbies have commented on my rosy reputation. And so of course, the cycle of bonhomie goes round and round, and spreads well beyond the four walls of our room. Good begets good – how come that seems so hard to learn for too many misery-guts. Yes yes, I could be more compassionate since I have to remind myself they do the best they can, but really ………!?
I’m finally out of hospital and a week into a 3 or 4 week rehabilitation course, and already I get out of bed alone, and almost climb one set of stairs! One step of stairs – flying along! One exhausing step after another, hauling myself up by the banister using my pathetically weak arms to augment the pitiful strength I had in my legs. It was hardly that I had much to lift in body-weight, nudging just fractionally over 58 kilos, and suspended at that level for some weeks. Like a wrinkled, wizened little old man, I had transformed almost literally into a shadow of my former robust self, dropping from a rather paunchy 83-4kg, a 25kg deficit.
There was scarcely a gram of muscle anywhere on my body. Arms and legs were skeletal twigs attached to an emaciated bony body. I could touch fingers and thumbs around my biceps; thighs were hollowed-out planks sitting on fleshless knots that were my knees. All traces of that much-admired ‘blackman’s bum’ had fallen away to be just a divided flat slab at the base of my spine. Each vertebra was starkly defined along the knobbly ridge of my spine. Shoulder ‘blades’ were just that, protruding out from the fleshless landscape of my back. Ribs protruded Belsen-like. My head, unable to shrink though certainly to swallow up any fleshiness, sat on a veiny, grissly neck stalk, relatively large and bulbous compared with the angular sparseness of my little body. Talk about changed perceptions of oneself.
Patience has become one of my virtues!?? I’ll be here for another 2 or 3 weeks, then a bit longer just make sure I’m all together and stable, then with a bit o’ luck we’ll be able wend our way home to Montescheno, and a little further down the track, take the great silver bird and flap south to the southland of fable and exaggeration, and much more no doubt.
Anyway, sooner or later I’m coming home, and Oz will be my home again, for all the time I’ll still no doubt be wandering here and there, not least to be with my beloved gels (unless of course they decide to come home too, which is a possibiliy, especially in the case of Aruna. Who knows, they may all migrate, including Sybille!). All will unravel itself in the fulness of time.
There doesn’t seem to be any future in Europe as it grapples with it’s economic woes and disillusionment as the money machine seeks to turn a problem into its advantage and tie the knot of fear and insecurity tighter around the necks of the gormless masses, who follow on moreorless meekly, occasionally bleating out half-hearted protests, and finally falling in line. Keep on printing that money, boys, and make those wheels turn, growth at all cost and all will be well. Utter irrational madness, but it’s in the air and most have swallowed it hook line and sinker.
What a weird experience this is in SO many ways. Having been immobile so long, with catheters all over the place like a mutant bunch of spaghetti, I’ve had to relearn so many of the most basic functions which we take for granted. To talk for example: having had a tube down my throat for so long to clear out the slime in my lungs, since apart from all the other dramas, I had gone down with pneumonia too, through being too weak to cough it up normally, even after they took the tube out.
Ugh, what an awful procedure that was, but what relief to have it out. How long it seemed to take, before my voice box was actually functional again. First I couldn’t even form words, and even if I could, there was no way I could get the words out as anything but a rasping burble. So frustrating, having so much to say, to express, already bursting with a sense of being ‘born again’, wanting to celebrate and yell it out, but being utterly incapable. A phonecall registered on the Villingen answer-phone is the voice of a pathetic, rasping little old invalid. I can hardly decipher it, but Shanti is able to translate it word for word. Trying to talk with mum and dad is an exercise in futility, with them unable to understand me, and me unable to get out any of the words I needed to say, let alone all of them.
Eileen, passing through on her way home after visiting her ailing mum, diverted to spend a little time with me, was utterly shocked with who she found, how tenuously I was hanging on to life. It was just very shortly after I’d received my new liver and I was as weak as a kitten, and barely conscious for most of the time, and totally unconscious for the rest. With the tube stuck down my throat, I was completely unable to speak, and even had it not been there, still I doubt if I could have anyway. In my moments of partial lucidity mentally, I felt so frustrated at being unable to express myself. Even the facility of movement prevented me from manually getting out any of my emotions or thoughts.
Some clarity was there though, and thankfully Eileen, drawing on her ESL experience, suggested creating a large-figure alphabet on a sheet of paper. Then Franci would help me lift and move my hand to indicate letters to spell words. That was a huge effort in itself, for I scarcely had the strength to raise my hand from the bed, and even having done so with her support, my hand was a continuous palpitation, like advanced Parkinson’s. Still, we managed to wave it around until there was some sort of consistency of direction towards a particular letter. Then the next. The first word I spelt (I did not recall it until today when Eileen told me) was G-R-A-T-E-F-U-L.
Eventually though, from one day to the next, it burst back again. Phew, a Button without words is a boggling notion. And because I was unintelligible there was a tendence for people to talk right over me. Grrrr, double frustration. Magnified at first by not being able to hear properly anyway, with everything muted or blurred. What a doozy.
Peeing and pooing too; literally out of control, and so many times I wet the bed, or myself, or the floor while desparately trying to get it out and point it where I wanted. Same with crapping; how humiliating, and too weak to even be able to wipe my arse. I couldn”t stand having any clothes on in bed either, so I was constantly flashing my all to all. Must have been quite a spectacle, especially when my balls were swollen up almost to the size of tennis balls, and penis weirdly misshapen too, all exaggerated further by the distortions of swollen legs and protruding ribs. But I had to let my poor old bollocks breathe!
As for getting up off the toilet, apart from being utterly unable to clean myself and to need someone else to ‘do the necessary’, I had no chance of actually getting off the throne itself without help, literally needing the full force of another person since I had next to none at all. Or extricating myself from bed, you know what I mean, just getting up. Simple you think? Impossible I found. Just the task of hoisting my feet over the side of the bed to permit the leverage necessary to counterbalance the rest of my bod into a moreorless vertical position. Again, not possible without the strength of another person to support me, lift me.
The very idea of being able to get myself down on the floor was out the question, much less to be able to contemplate getting myself up again. Now almost two and a half months after the transplant, I still can’t do more than manipulate myself down vaguely into a bent half-prone position initiating the Surya Namaskar yogic series, almost drag my torso along the floor to where I should be able to raise my torso in a half push-up. But can’t; quite out of the question at this point, so I half-adequately, and with a bit of shuffling of limbs, manage to push my bum up into mountain peak, step forward with one foot (actually dragging it forward with one arm for assistance), ditto with the other crippled excuse of a leg, and exhaustingly stretch myself back up into a vertical position. That’s half of one round, miserably poorly executed. Maybe next week I’ll manage the other half, if I continue to force myself. Which of course I will.
The thought of being able to be physically strong enough to contemplate building this gorgeous room extension at Sundari in the coming months seems like sheer nonsense at this early stage. But considering how much progress I’ve made over these past few weeks, surely I WILL get there sooner rather than later. Patience truly is a virtue, and a lot of persistence. Now up to 5 floors of steps in one pauseless climb, although the last flight is stretching the limit. Ha, but today I actually managed to do the last flight with virtually no resorting to hauling myself up with the banister.
I have to remember the difficulty I had just in negotiating myself to the loo not so long ago, wobbling and stumbling, and too often actually losing my balance altogether and crashing catastrophically to the floor, blood and bruises suffered again. How often I have lost consciousness briefly in these humiliating circumstances. Today is the first time that I haven’t been adorned with a host of bandages to protect my various injuries. And it’s not even necessary to lose balance to draw blood. Brushing ever-so-lightly against a door closing too fast behind me is likely to break skin, and the other day I quite lightly ‘scraped’ one wrist against the other and succeeded in peeling off an almost three centimetre strip of fine skin. All my skin has been as delicate as rice paper, and damp rice paper at that.
Apart from being on automatic in the peeing department with a catheter threaded into my penis, I had other tubes handing out of me for breathing and pumping in all sorts of gunk in the name of saving me, and drainage from the ongoing ascites (I must say it was a big relief not to be swelling up like a balloon every few days and needing to drain up to 7litres out of my belly in one go!). And for pumping in and out blood – out with the old, in with the new. During the operation alone I was actually transfused about 13litres, and goodness knows how many more afterwards. Glad that the blood screening process has been improved so much as a result of AIDs, or I’d be a prime candidate.
There’s been plenty of people who’ve said “Wow, John, you’ve really done it well!” or words to that effect, with the implication that I’m courageous or have a strong will or am somehow very brav and good and so on. But actually, honestly, that’s crap, to put it politely. How I’ve responded to these circumstances has zero to do with me and my will or desire, but everything to do with my belief and, more to the point, what I have been blessed with , independent of ‘me’ and my ego.
I am and do what I do simply because I can’t do anything else. I know that this is a fundamental law of Being; as dear Heather Bache memorably once said to me when I was being critical of somebody’s action: “Don’t you think that he did the best he could? Don’t you think that everyone does the best they can, all the time?”
I thank you heartfully for that wisdom, HB, and I think it’s perhaps the greatest gift you gave to me in our years together. Seems a pity that we ended in such bad blood, with her trust in me destroyed by my deception. But didn’t I do the best that I possibly could do, HB? If we do something that isn’t kosher or honest or clear, it’s only because we aren’t capable of better, since something(s) blocks us from doing the best, in clarity, truth and trust.
Don’t get me wrong. I am so wordlessly grateful for what I have inherited, received, become. I know that I’m a funny fellow, unconventional and have so often apparently self-sabotaged myself, but whatever ‘errors’ I have made along the way have simply been lessons to learn, that once finally learnt, I need not repeat again to reinforce what I have learnt. Ignor-ance is just that; ignoring what might be plainly obvious from an objective observer. I mean, in this past year I have learnt so much about myself, gained so much strength to make fundamental changes that have been ‘needed’ for so long. Including simply acknowledging the truth: that I am indeed a simple extraordinary person with the dog-given capacity to be able to light people up, inspire them and ‘make them’ feel better that they did. What grace to be gifted that capacity! Now let me honour it by accepting it, letting it rein-free. Yet not without the sensitivity and awareness to know when I am overwhelming others with it, to back off and allow the dust of my energy to settle, to allow the other to absorb and integrate it, and offer their own contribution to the collective intimacy. Not another Button monologue. Is it JB talking to himself again? Be awake and alive. Time and again I’m gratefully aware of the appreciation others have in the chance encounters of each day with me, in which I touch on an uncharted thread of their life’s point of view, and somehow inspire them to see the world from at least a slightly different angle than previously. Or perhaps remind them to be awake to something they’ve long known deep down, but didn’t have the confidence or even daring to be able to embrace to their being. That beautiful philosophy brought to me by Joseph Campbell: Follow your Bliss! Not being an exhortation to debauchery or ??, but rather a reminder to be completely self-honest and courageous enough to admit what wakes us up, to what we can really celebrate in life. To not accept mediocrity, getting by, to things being ‘not bad’. As if ‘not bad’ can possibly be ‘good enough’. Go for it all, live life to the full, be alive!
I’m brought back into the awareness of the miracles that exist every day, in every moment, if only we are aware and awake to their existence and not instead locked into the inane mundane daily habits and habitual patterns of locking into certain modalities and conformities. Normality. Life is not ‘normal’, or should not be so. We must strive to be awake all the time, to meet every moment as fresh and full of potential that we can grasp and play with, manifest great things with. No event is a repeat of old familiar events, since we are different in every moment, exposed to a moment we have never actually met before. We only ‘pretend’ it’s familiarity, partly for the sake of repeating what has been successful before; why rock the boat and reinvent the wheel you might say. But it’s possible surely to repeat the same pattern of action and STILL appreciate its freshness, see the situation from an awake new perspective coloured by the experiences that ‘should’ have coloured anew this new moment in our lives.
I feel so extraordinarily almost overwhelmed with grace, with benediction from so many corners, and am still astounded to hear my mother making such comments as “well it’s about time you had a bit of good fortune”! My life’s attitude has for so long been underpinned by gratitude for the circumstances of my life, so totally convinced that every moment is a gift that offers a new experience, a fresh perspective, an opportunity to grow, to learn, to transform. How can it possibly be otherwise.
Going ‘back’ to Oz is of course another step into the unknown, since however familiar it is from our past history together, this will be a new experience altogether, since I have changed, and Oz has changed. Ah ,the great challenge will be to remain fresh and alive, to avoid falling into tired old patterns and habits. Heed it well, John Button.
December 1, Alsfeld, Hessen.
Well now the time is closing in on ‘therapy’ time, meaning the administration of a cocktail of chemicals designed to mortify my Hepatitis C, genotype 3, virus. With my specific formulation of the virus, I’m told that there is a 40-50% success rate. Not particularly exciting chances, though surely worth trying for, if it must be. So meantime, I try other possibilities. Homeopathics, chinese herbs, as well as the love-wonder of beloved Amma, and now the healing ‘touch’ (no touch in the case of today, though he’s credited with remarkable success in physically removing tumors and the like, witnessed in graphically gory videos too) of Joao de Deus, the Brasilian christian mystic-healer.
A fascinating experience, beginning early morning by lining up with thousands of others for a €118 orange wristband to gain entrance to the hall. There were a series of curtained-off halls filled with seats for different stages of purification or meditaion or healing operations, or debriefing cum sales. When those who had come for an ‘operation’ were called to line up, I took my place.
The op comprised of a quite simple guided hand-on-heart meditation, lead by different people and presided over by various ‘entities’. I am accustomed to ‘calling down the golden light’ in my meditations and supplications, so it was quite a familiar procedure. I surrendered to it, successfully restraining my skeptical tendencies. The process only lasted ten or fifteen minutes perhaps, but I exited even more spaced out.
But positively so. The ‘energy’ of the whole venue was already strong for me, and I had easily slipped into a space of world-detachment almost from the start, even while slightly cringing, I admit, at the people lined up to ‘crucify’ themselves on a wooden triangle erected for the purpose; I must acknowledge that I don’t know what is the signficance of this aspect of the ritual, and didn’t need to tarry with my dubiety at all.
Having experienced the ‘operation’, the strong advice was to return to the hotel/hostel/wherever and treat it as an ‘intensive care’ twelve hour retreat, of going to bed and eschewing any stimulation by way of diversions and electronics, music, entertainment and physical exertion. The retreat is modified for the next 40 days, with the instruction to abstain totally from sex, alcohol, spices, pork, and do a procedure of sleeping in white after eight days and drinking ‘energised’ water in the morning. The ‘debriefing’ hall comprised of leaving a chit or self-photo with name and birth date on it, drinking a wholesome bowl of soup, and a sales section offering quite a large range of photos, videos, CDs, books, cosmetics, herbal preparations, crystals and water the later two specifically energised by Joao himself. Plenty of money-making opportunity available for the organisers there. Am I too cynical? We dutifully purchased our bottle of ‘holy’ water, and headed home. Then reversed up when Franci felt the need to return and hopefully experience the physical presence of Joao, who had already attended the healing operation, but since that was an eyes-closed arrangement, she hadn’t seen him. I was only very slightly curious, but in the event, we didn’t see him anyway, and had to satisfy ourselves with meditating, challenged at first by the neighbouring children who were utterly disinterested in the goings-on which their parents had dragged themselves along to, and did their best to entertain themselves otherwise by torturing their beleaguered father and, by extension, the person sitting nearest to them. Me. We moved away after some time.
When the lunch break came, we dutifully retired to our (un)youth hostel, and took to bed. I had some of the most spectacular dreams I can recall in …well maybe for ever in terms of graphics. It was a Benares type place peopled by lots of exotically garbed western freaks, who welcomed us – me specifically – with such a humblingly heartful respect, like an old renowned unexpectedly but joyfully turned up. It was sensual sometimes overflowing to sexually charged. No nitty-gritty sex, but strong flirtation, yet all done with no intention of transgressing to fucking on either side. Franci and Shanti and I were all there, sometimes together and sometimes drifting apart in different directions spontaneously according to the waft of the dream.
A curious ricketty and highly-painted funicular railway delivered passengers from somewhere ‘down’ up to the sunny heights. We were chugging up in it, hanging out the windowless open sides, stopping along the way and meeting new people, or clambering up. Shanti somehow disappeared at one stage, precipitating a frantic search for her. New came of little girl dead further down the track, but a frantic scramble down brought me to a gruesome small corpse that was not my darling. Climbing back up the hill, I came across her in a scruffy dusty playground, slightly standing off from the other kids, but delighted to see me.
Vaudeville type show with two performers in lacy wedding dress costumes, with one of them flirting outrageously with me, at the same time as another buxom woman also in lacy white – bloomers in this case! – who was standing in front of me, wilfully pressing her big bum back against me. I became a bit aroused and she turned to me and we burst into raucous laughter.
The buildings were wildly ricketty dark wooden fantasies, dusty and leaning-constructed in all sorts of bizarre angles. Down another side valley from the top of the hill was another section of the freak community, with a thriving business growing mugwort (??!).
Returning to the main gathering place of the theatre and wildly costumed freaks, Franci emerged from a cupboard-like cubby hole in the wall dressed outrageously colourfully in reds and greens and tassles and mirrors, with henna configurations on her face, and an illuminated joyous expression on her face.
The overriding theme that seemed to underpin it all was to live life to the fullest, not to wallow in the ordinary or the ‘secure’, that ‘security’ (meaning insurance and pensions and the like) are contrivances for the insecure folk. To go for it, grab the bull by the horns, step off into the unknown, dive in the deep end, live for each moment and let the unknown future take care of itself.
At the Cronaklinik today for a biopsy to determine if I could be rejecting my liver (unlikely) or if my somewhat elevated virus load is plainly and simply the hep C virus activating again, which of course will precipitate perhaps earlier rather than later, the beginning of the Interferon cocktail therapy, with it’s (only) forty to fifty percent likelihood of success in a case like me. Of course I would be one of the successes, but by all accounts the side-effects along the way can be pretty odious. Fatigue and depression are the two most common ones cited.
I ran into a few old faces, and the more I meet, the more memories they stimulated, so that now in this new year of 2013 I have a cavalcade of impressions and rememberings I’d lost for so many months. Piecing them together cronologically isn’t easy, nor what comes out to be totally trusted. Reality is what we make of it. But wow, how off-the-air I’ve been: after the last few years of jet-setting all over the Big Ball throughout the year, I may have not left this smallish patch of it for 14 months, but boy have I got around in my head. Further than ever, as wide as my feverish imagination could take me. None of these has a particular order, but they were mostly in the crazed months after the Big Op. And the Little unwonted Ones to follow.
Russia in a super hi-tech klinik
Off in Siberia in two ships with the Kalchthalers on the other one somehow footing the bill. As usual; do I sound just ungrateful when I say that there is always a debt to be repaid in this country, if not in lucre then certainly in deed and word.
Japanese-style décor minimalist, water ponds reflecting beautiful light at dawn and dusk
Outside like Pakistani dusty streets, then a snowy steppes scene
In Pakistan in a sort of YMCA-ish institution, hitech gymnasium with a curious railway system for conveying the athletes around the various machines. This little trackwork wound itself all around the walls and over the ceiling. I never did consider how the voyager managed to remain attached to the vehicle, but it seemed like a good idea to save space.
Pissing in the beds there which were rather uncomfortable metal camp stretchers with thin mattresses that dipped in the middle, into which I puddled. I did manage to struggle out of bed one night and stagger to the toilets, but they were a really primitive low sub-continental variety and just as hygienic. I pissed and shat on the floor since there really was no toilet hole, and cleaned myself up as best I could.
Turning me over from one side to the other, unable to lie on my back for the superating wound on my arse from lying so long
Completely unable to help with any of my movements, needing the support of others to do my moving for me.
Intensive care for two monthsg forced to have it put on, ‘doing deals’ on how long I should endure it
Unable to spit up phlegm from lungs, too weak to cough; blowing into a unwhistling whistle to push a ball up, let it drop, push it up, etc.
Pneumonia and weakness of lungs necessitating
Struggling with the hateful throat tube, then the face mask and oxygen assistance. Trying to refuse to use it and virtually having it forced over my face, sometimes having ‘done deals’ as to how long I would ‘practice’ with it, and getting uselessly furious when the nurses wouldn’t come to take it off on time.
I was so angry sometimes, unable to accept the prison of my debilitation.
How many holes there are in my memory of this last twelve months. Every now and again a trigger releases a new flood of visions and recollections from months past, of places and faces, real and imagined.
Months ago there was not the slightest difference, when dream and wake-states all merged together in a confusion of circumstance. What the mind conjures up out of ‘madness’, or for distraction or interpretation, confusion and exceptional perception, is truly amazing. And how it links ‘real’ images – faces, things, particular light and shade – to reveal the recollections of moments past, of whole periods when I was (I think) elsewhere, sometimes only in snatched blinks of recall, other times long durations that occupied or seemed to occupy, great slabs of time stretched over days and weekes. Maybe, could be. Does it matter, anyway?
Russia and an ultra-modern clinic peopled by my real everyday nurses and orderlies and doctors, coming and going, ignoring in my raving and struggling with all the tubes and needles sticking in and out of me, attached to bottles and bags and machines and whatevers.
This was during the time I must have ben just hanging on the edge of Life-Death, when I was being monitored day and night, my levels of electrolytes stomach fluids oscilating and carrying-on, blood accumulating, urine running as it liked through the catheter, then measured and analysed each time, crap less easily contained, but when it was, no doubt also analysed and deduced too.
Eyes following torches flashed and moved this side and that,
What is your name, how old are you, where are you – questions on questions put to me in Domodossola pre-induction into that salubrious institution.
Having taken my first major journey home to Montescheno after months in Villingen-Donaueschingen, still fragile – way too fragile as it transpired, and the girls coming to visit precisely when I tumbled over the edge. I’d them running around after all my needs there, and they were amazing, superb, taking such tender care of their poor beached papa. I could hardly move from the couch in my room, peeing in the papagaia and calling for their next errand. And they did it, especially Aruna, without a murmur of dissent. How blessed with such wonderful daughters, so sensitive and yet responsive. What those two have experienced in their short lives; what wisdom they have acquired. It can’t be such an easy life, not least since their experience in some ways distances them from their peers who have likely lived much more sheltered lives.
Anyway, I’d had this crazy notion that I would be able to go back to Pakistan to finish off that project, and had been insistent enough that Franci had almost succumbed to my demand. Poor darling was being battered by my angry insistence that I was okay, and would be ‘just fine’ in Pakistan, that I just had to pop over there for a couple of weeks to finish off what I’d started and give a bit more chance of Permaculture succeeding in those outrageously hard conditions. She rang Jayam anyway, who freaked out immediately, and managed to convince Franci that she had to call an ambulance and get me to the hospital quickly. I’d fallen over upstairs earlier in the day, when I blacked out, and was really in a hopeless state, though all the while demanding to be given my autonomy, that I couldn’t stand being so controlled, and to leave me to my own devices. Ha, what an over-baked cookie.
Anyway, Franci followed on Jayam’s advice, and enlisted the help of – I can’t remember – maybe Renzo and Mario. I was so out of it then, that I can’t recall more than a fog of murky detail. Boy, though, I was so pissed off when the boys from the ambulance piled into my room to carry me away. After all, I was going to Pakistan in the next couple of days, and the flight was booked, practically waiting for my arrival. I ranted and raved at these poor guys. I guess they’ve seen it all, but I was a real nutcase for them. They basically ignored my theatrics and went about preparing for my departure anyway. I guess if it came down to it they would have somehow sedated me, though that would hardly have been necessary, since they could easily enough have overwhelmed me and strapped me to the stretcher.
As it was, I’d exhausted myself with the futile protesting, and eventually managed to see the wisdom of the drama, reluctantly accepted that I was not a well-fellow and it might not be such a bad idea to have myself checked out in hospital. So I let them do their stuff. By this time half the neighbourhood – maybe all – were aware of my histrionics and were helping or watching on, whether through thinly parted curtains, or directly on the scene of my madness.
Franci would follow us down in the ambulance, and I think Mario came with me on board. I was really off the planet, but do remember that journey in the horizontal position, winding round the bends – I think it was drizzly raining, or maybe that was me! Was aware of the bumpiness of the ride, though they took it slowly and it seemed to take an age to get there.
Of course like any bureaucracy, Italia is no different. In spite of my state I had to be checked in and interviewed. They wanted my details, but got a psychiatrist or similar to do the questioning. Oh boy, that’s when I really recognised how out to lunch I was. She asked the simplest of questions.
When were you born? How old are you? Where are you? What are you doing here?
She even offered to get someone speaking English to make it easier. Not that it would have made a jot of difference, My head was so far off with the fairies that even if we’d managed non-verbal direct communication, I still wouldn’t have been any closer to unravelling the correct responses.
Definitely needed to be checked in. There was probably some discussion of whether I needed to be restrained, but apparently I was deemed as harmless in my madness. After the luxury and kindness of Donaueschingen Klinik, Domossola Aspedale was like entering a chamber of horrors. Stress, indifference, uncaring. Doors slamming somewhere nearby all through the night, those passing through apparently utterly oblivious to the din they were creating and the discomfort it might be causing to the patients. Maybe oblivion to the fact that the people they were supposed to be caring for were actually sick, unwell, presumably suffering, needing help and support, and more, gentleness and caring, warmth and nurturing through our discomfort. No, couldn’t give a stuff! On the second or third night, there was clearly a need for celebration and the nurses and doctors retired to the station room and partied out the night until two or three in the morning. Not a chance of attracting anybody’s attention. They all had better things to do.
Hmm, I recall when Shanti was close to birth and we’d tried to find a suitable midwife, but also thought it prudent to check out the local hospitals in case there was an emergency necessitating hasty hospitalisation. We visited three hospitals at that time, at Domo, Omegna and Verbania. Each was as bad as the next, with little interest at all in appearing concerned for our situation, doctors scarcely taking the effort to introduce themselves to the patients in their charge and care, treating them as no better than objects to be manipulated or ignored according to their whim.
Disgusted, it was little wonder we decided that Shanti should be born in Villingen, like her sister. As it turned out, she was almost Swiss, with Jayam having 4 minute contractions as we crossed the Alps. We made it though, and were even able to find the midwife we’d wanted for Aruna. Little bugger though, decided to turn around in her mama’s belly at the last moment, so Shanti was destined to arrive via the Villingen hospital, again like her big sister.
The difference in care and professionality between Germany and Italy is cheese and chalk, wine and piss. All the old cliches about ‘German coldness’ and ‘those warm-hearted Italians’, could not be farther than the reality in the case of their medical systems and the treatment that their citizens receive. Or don’t.
Oh what love and care I’ve had heaped on me from all over. There in the hospital in Domo, the lousy care of the staff, the appalling food (what an indictment, that in Italy – land of the gourmand and all things edibly fine – that when you need nurturing most, sick and down, the hospital feeds muck I wouldn’t serve my favourite pig), actually they fade (almost) into the background against the love and concern and tendering from my friends. Dear dear Franci, of course above all, but also my closest friend there, dear Ken, sitting through the night vigil by my side, and Kali bringing me sumptuous food to tide me through that outrageous lack. And oh how she well cooks; enough to mend my shattered nerves and body at least in part.
Friendship – how can one value such a priceless treasure. How can one even start to repay what friendships give, since it is a price beyond value. And what friendship has done for me this past year. Saved my life, of that I am sure. The pure selfless love of true friendship carries us through times when our own strength just may not be quite enough. Who can say where the crossover point lies between life and death? Here, or there? Like dear Ken, doing his bedside vigil in that awful Domodossola hospital, not for one night but for two. Uncomfortable enough for me as patient, let alone as a carer watching through the night.
Upahara visit me there too, almost desparate with concern that I might be dying, as indeed I may have been, presenting me with a small piece of that beautiful connection we have had these past 23 years; a wee rock from the blessed slopes of Arunachala. And Michael and Chiara came then too, and again in Tuebingen, bringing me their sweet presence and boundless love.
All those little bits, supporting me through the deepest valleys, through those times when I was hardly able to discern reality from illusions and dreams, the very long process of ‘reality’ and ‘unreality’ merging and separating, with little margin to recognise the different, nor any care to do so. Only now, six months after that new liver arrived on June 14th night, and almost twelve months to the day since I went under the knife in Villingen on January 5 last year to remove the cancers on in my liver. What a long time ago that is, and how much water and blood and tears have flowed in this year.
This has unquestionably been the adventure of them all, in a very adventurous life up to this point. How can I compare them anyway? Well actually, all the rest seem from this vantage point to have been relatively superficial little escapades on the way to this main event I have ”performed’ on the German stages.
This bloody tube! Yes yes, it was well explained that I had to have it because of the pneumonia that had settled into my lungs, due to my weakness rendering me incapable of coughing up any phlegm. Impossible! Try harder! I rasp, in a pathetic parody of clearing my throat, but simply can’t succeed in bringing anything out.
How must it have been for all those around me, to entertain my fantasies.
False alarm op – telling A it was all over
Relationships with hosp staff
Prof Walter’s care
Franci’s friction what was it all about.
Vomitting over Ock
Falling over – intensive care, in donaueschingen, sonnenhaus, in bathroom, at night getting out of bed when I shouldn’t have.
At last came my day of release from the Klinik. Or so I thought. I would round it all off by a three week rehabilitation course just to get me on my feet again. Arriving, I knew immediately it was hardly my cup of tea, with all the trappings of a health hotel for the wealthy and bored. Still, a delightful little room with ensuite and a pleasantly rural view from it’s own wee verandah. That’s fine thank you very much.
Ooh it will be good to plunge – or at least ease myself slowly – into the swimming pool. At last. Who am I kidding. I can not more than weakly shuffle my way to the lift taking me downstairs where I hobble my way to the dining room. Plunging definitely not; easing myself tenderly into a pool? Well maybe.
After a week or so though, I am really making progress, so much so that I have even begun to forego the lift and gingerly negotiate the stairs, up and down. Not always, but whenever I feel my strength, or lack of weakness, justifies such boldness. The girls are going to visit at the weekend. Oh yayy!!
They come and are delighted to see me at least beyond horizontal where they saw me so long. Actually, we’ve managed to be mobile enough – with a wheelchair or walking frame though – to make it to the Cronaklinik cafe before, but here I am actually walking without any such mechanical assistance. What progress. They stay overnight in their own room too. Next day though, negotiating my way unsteadily down the stairs successfully again, I am so excited by being with my girls again in a vaguely ‘normal’ state, that I forget my concentration, tangle my feet, and find myself plunging to the carpet with no hope of recovering myself. Crash! Again!
Blood everywhere, on arms, and face where I have taken the brunt of the action kissing the carpet. Shit! The girls come running back to find what has delayed me, and find their dear sick papa sprawled all over the floor, bleeding like a stuck pig.
What they have been through with me. Again.
Finally having partially recovered from my heavy fall, I was able to walk out into the forest, increasing my hobble day by day until I was finally able to do a complete circuit of almost 3kms, but which time I was climbing 7 or 8 flights of stairs
Oh the foolish heroic pride in refusing to take a stroller to support myself in spite of the recent crash and my on-going instability. Trying to be very cautious, but even so one day on a very steep down section I slipped on the gravel surface and fell ….but was actually able to support myself on my hands before I fell completely and sprawled myself in the screaming mess as with all the previous times. Such a sense of victory that little self-rescue incident was for me. Ah, I can do it, again and again. Steady steady, one step after the other.
Physio therapy in hospital, the young dude who used to taunt me and urge me, and rush me along, and I hated it, and told him so. He would almost have to lift me into a vaguely vertical position in the stroller so that I could shuffle around the halls for a hundred metres or so at first, and day by day a little little further. And the women, some who actually seemed less patient than the men, not wishing to take my wants into any consideration ahead of their own perceptions of what had to be done. Others were more gentle with me. At first they had to work in twos, since in spite of my skinny skeletal state, I was a dead weight with absolutely no muscle to support myself, relying entirely on their strength to manoevre me from bed to seat, or sit to stand.
The little games to play to try to strengthen me: the varying tensions of coloured gummi bands to stretch and pull with; the tubes with balls in to blow to the limit, the tennis ball with a cut and drawn to be a funny little head that I had to squeeze; without the cut there would have been no possibility of me compressing it
the balls in a basin of fine gravel that I had to pick out one by one, using different fingers; the play dough that I had to press finger by finger and back again, gradually increasing my dexterity and co-ordination.
And the older, short balding man, what a sweety, patient and slow and encouraging each of my small advances, never pushing too hard, yet progressing day by day, letting me know my own limits, or very gently recognising them and pointing them out to me.
In ‘hospital in Russia[, some sort of metal boxes ina ‘train wagon.
Wanting to get orangejuice or chocolate milk from canteen up stairs
Stress: this year I have really known what a killer it can be, and how utterly pointless it is at all times. Yet we keep on making it happen, almost as if it is some sort of adrenalin which we for some perverse reason can’t do without. Why else would we bother to conjure it up and, more pointedly, why would we bother to conjure it up again and again, sometimes almost daily. I daresay some people actually ‘do’ it every single day, leaving not a moment of time to breath out and just be, to permit oneself the awareness of all the glory that abounds almost everywhere, all the time. Adrenalin can certainly be a buzz at times, and accompany pleasure and thrills, but the low-level type related to discontent and disapproval, anger and resentment – and so on – have no justification at all.
So often I could actually feel the life-draining quality of it, when I was already hovering barely above life’s limit of survival, and dropped one more notch by letting myself be carried into stress, or worse still, even creating it myself, by reacting to some irksome nothingness, or bothering to let the behaviour of others actually rile me. How pissed off I was – not once but repeatedly so that I could even anticipate it, look forward to it (not pleasurably, but just knowing it was going to be) – by people who would loiter immediately outside the hospital door in a crowd of fumitori, puffing and coughing amongst the signs declaring the no-smoking zone and indicating where an appropriate (?) area had been designated for them to have their puff hit. I roused myself enough to point it out, reasonably gently, to some offenders that they might move themselves elsewhere. Then when dear Ock inoffensively pointed out to me that it really wasn’t a big deals and once might practise equanimity and compassion, I was even more offended and chew her head off immoderately. What a wally, since it not only served no purpose to offend her, but even less to do it to myself.
What’s more, then I would feel exhausted, drained by it afterwards. I could do much worse than offer myself a new year’s resolution to consciously avoid allowing myself to be sucked in by such folly. Forget about the new year’s resolution; make it a lifelong resolution and be done with the cursed cancer-causing contagion once and for all. And so be it.
Ha, that was a prime example that I perpetrated in Villingen, trying to encourage the girls to pull their weight more around the house, to reduce the stress on their mama and, by extension – on themselves. The concept in itself may have been perfectly well intended and even noble, if I didn’t make so much of a daily crusade of it that it caused me more stress than it probably succeeded in reducing to the three of them combined. Or even if it was somewhat successful, why bother to pollute it by burdening myself with such dross as anger and rage. Fine that it seemed to be one contribution I could make, to improving their quality of life to compensate for any imposition I was creating by my presence.
And yet another one: on one of the all-too-few (for me anyway) occasions of the girls visiting me in the Tuebingen Klinik. Shanti’s hair was a bit greasy and lank, and I ludicrously allowed it to offend me so much that I demanded that she should take a shower.
“Go and take a shower, I said.”
“But where,” the poor darling asked me.
“Well in the bathroom of course. There’s a perfectly good shower there; I use it myself every day.”
Repeatedly, working myself up into an indignant rage that she should dare to refuse me. Off the blooming planet, really, yet – or and so – still bothering myself to create stress for myself and all others. Truly madness, yet we do it without even the justification of ‘madness’, permanent or passing.
She didn’t shower in my hospital room as it turned out, and my stress and anger passed, as of course they always do. Or certainly should.
The shower; just another of the sites of my many collapsing, or tripping, or passing-out dramas. Each time, over the course of five months, whether it was in the shower onto tiles, or in the corridor on carpet, or the asphalt of the road in Donaueschingen, or against the window ledge of my room, there was invariably blood and bruising as the result, and yet more bandages and stinging antiseptic, and tape that would excruciatingly rip out hair by the roots, or peel away layers of skin to manifest yet more wounds.
Not to mention the holes and lesions and other breakings of skin caused by all the catheters and IV entry/exit points, for the eternal blood samples sometimes several times a day ( depending on how many different departments were playing with my body on any particular day, depending on which particular phase of my healing, sliding, plunging, reviving we were in at the time. I finally managed to insist on avoiding or minimising the use of tape. My skin was so delicate that several times I actually peeled off several layers of skin (yes, more bleeding wounds and lesions) just be sliding one skin surface against another, let alone actually lightly brushing against a harder surface such as door or corner of room. Each one raised more bruises, welts, dark pigmentation changes. Not to mention the spots and irritations erupting over different parts of my body. Not a beautiful sight, I’m sure.
Every now and again I would look at myself in the mirror; not easy to use it as my self-esteem exercise of ‘I love you John Button, and I accept you just the way you are’, I can say now. But actually, since I was most of the time in such a state of surrender to all that I could do little or nothing to change or affect, that even though the love was not specifically my focus, acceptance was (I repeat, mostly) my state of being, neither intentionally nor consciously. It was just the way I was. Often enough even, amused by what I saw in the mirror. Since in my eyes that acceptance simply was reflected there, it was impossible not to be entertained in part (astounded, amazed, boggled, yes) by the sight of the Belsen-like waif in front of me or, earlier on in Donaueschingen, by the bloated pig so swollen up in belly and legs (not to mention balls and penis), as when I was going through my ascites phase of vast water-retention. It got so bad, not to mention bloody uncomfortable, that when the diuretics didn’t help a touch, we had to resort to drainage. Literally just sticking a needle in my rotund belly cavity and letting it drain out by gravity-feed! One day more than 7 litres of yellowish water flowed out of me, but within a couple of days it was almost all back again.
Then my kidneys failed for a while, creatinine values all over the place, and I had to do dialyses every day. At this stage my drama was really becoming chronic. Hepatic encephalopathy started setting in at this stage, indicating very serious liver failure leading to the kidney failure. Prior to the dialyses we had already begun the electrolyte fun and games, playing with all the chemicals they were using in the struggle to balance my body as the sodium and albumum and red blood cells in my piss levels jumped around all over the place depending on what they were adding or taking away. It’s only later that I recognise – grazie Wikipedia – that these were potentially deadly serious aberrations, when everyone was becoming super-agitated and worried about what was happening to me, and pertinently, what might happen to me. And I continued on in my blissfully naïve fascination with what was going on for me, literally going crazier and crazier.
Yoga in the wards, corridors etc
Food cravings – Turkish food – kebaps, falafel etc
Prof Walter urging me to build up my muscles, but what an effort. I took it seriously though, pacing the ward, then corridors then stair, starting at one flight of stairs and building them up. There weren’t enough floors for me, so I had to do a couple of the four-floor rounds to exhaust me. By this stage there was no way that I could do Surya Namaskar, being just too weak to lift my upper body from the floor, nor to step forward and up, even if I could have raised my torso.
I really must have been an eccentric patient for them, but apparently an appreciated one, for they all treated me so gently, so humourously, so tenderly even. Another proof of my theory that it does one no harm to be a little different, even quite a lot different, from the ‘norm’. As long as that ‘difference’ is perceived to be harmless, not dangerous. After all, everyone seems to need an ‘other’ to identify as different than oneself, whether as a scapegoat, an amusement, a fascination; at the very least a form of light entertainment!
Talk about the walking wounded; that was me, and time and again I notioned up the dream of going to luxuriate in a thermal bath, of swimming again and healing my poor wasted body, starting the process of adding some muscles to the skin and bone frame I’d developed. And so again, such an idea was shelved for an unknown future when I’d be miraculously free of gaping or superating wounds, able to plunge – or at least slowly waddle – into the water again at last.
Fellow patients; assorted bedfellows. I sure had a few over the many months of incarceration of 2012. Mostly very aimiable ones too and some downright delightful. Quite a few, of course, who I could pass in the street a million times over and have not the slightest in common to draw us together.
I think there were only two who I really clashed with, and later did my best to find a way with. And only one was beyond the pale. Poor old bugger was even crazier than I.
MY DEAR MUM
The sms from the folks today WAS from today, and I only halfway convinced myself that it COULD have been sent from some time before and not read, considering that the date and time obviously hadn’t been set. Of course that didn’t negate the disquiet I felt. Actually, I quite often have a sense of foreboding with electronic communications coming from them, since apart from the weekly letters – regular as ever written weekly Sunday for the last 40 years near enough.
This time it was one of foreboding, confirmed by Ock in the early evening. Dear mum had a couple of strokes last night. Sitting in her chair she suddently blanked out and couldn’t talk. Clear enough and the ambulance was there super-pronto, whipped her into hospital, clamped on the tubes and whatevers, scanned her lovely head. Cancer there too; maybe her body is riddled with Jimmy Dancer now. What a doozy of a year this is.
The thought of not cuddling my dear wonderful mum is so hard to swallow, however much I know that time must come. Not to have those beautiful intimate, passionate repartees, exploring our common ground and differences.
I don’t like Wikipedia’s synopsis of brain cancer and the portent it holds: “Secondary tumors of the brain are very common in the terminal phases of patients with an incurable metastasized cancer; the most common types of cancers that bring about secondary tumors of the brain are lung cancer, breast cancer, malignant melanoma, kidney cancer and colon cancer (in decreasing order of frequency).” Oh dear, dear mum, hang in there and let us be together at least one more time, let us hug some more times yet. I pray that you will last much longer in the glorious form you’ve been recently. Ha, we know well about miracles and the power of love, don’t we?
I suppose this IS a sort of eulogy, however longer she lives. Seems anyway, more appropriate to think of her now while she’s still around. Writing out recipes in detail for Dad to refer to when she’s gone; taking care of him to the last.
I had really grave doubts for a long time as to how he would fare if she popped off before him. It will devastate him, to be sure, to lose his beloved of sixty three adoring years. Yet he really has made huge strides that I’d not given him the credit to be capable of, in coming to grips with this aging thing, even with the frustration with his failing bod and inability to do those big walks that he so loved.
Still, the question is a big one as to how long he’ll endure without her. I’d really like to be there with him, now and later. That’d be so precious, but will have to wait and see. May the waiting be a long one. She’s his sage, his carer, his quiet space when he needs it, his sharp word when he needs it too, but always with love. How blessed I am to have inherited those two, who have so inspired me, guided me quietly, had the wisdom to leave me my space to make the mistakes I needed to learn from, loved me unconditionally whatever doozies I have thrown up at them. And there’s surely been a few!
Right from the word go, apparently. Having received a baby girl angel manifest in the form of Christine Elizabeth (God bless Bessie Windsor I suppose, and Gawdsave the Gween), they thought the little sibling they would produce to accompany her would likewise be an angel. Think again, smarties. Mum delights in claiming that from the moment I slipped out into the world, she looked down and thought, ‘Oh-oh, this one’s different.’ And that the good doctor Jim Felsted declared that she’d produced the ‘missing link’. Awful people all of them, for not recognising other qualities than angel ones; clearly not a sensitive cell in their bodies.
Funny the way I look down at my list of jottings on themes to cover in this rave, and every one of them has some sort of negative quality about it, in which mum is remembered as being the one whose comfort made it all okay again. I wonder if that helps in some way to explain the declaration she made years ago, and has repeated it often enough since, that if anybody had a long string of bad luck situations, then it was me. And all the while I thought – and still do – that I have always been blessed with such a fortunate and blessed life. Perhaps not in the conventional manner of material excess and smooth-running relationships, but surely that has little to do with luck and plenty to do with what I have somehow conspired to precipitate myself. With the result, maybe, that I developed the attitude of considering every offering to be positive, as an enrichment and experience with which I would surely grow, and so be the better for it in the learning that would come from it.
Now (29 October, 2012) time seems to be closing in on us. Mum has brain cancer and possibly more, on top of the bowel and lung cancers. She is dying; the question is, how soon? I pray that she ‘waits’ for me to come to her. I’m a little caught right now. I would dearly love to jump on a plane and be with them both now, as they struggle with this most profound transformation of their lives. May she have the surgery performed by Andrew Hunn in a couple of weeks, and recover well, and live for years longer until she expires one night simply from ripe old age and a gentle resignation from this world. And may Dad moreorless accompany her on that step, that neither must suffer the emptiness of life without each other. Oh may it be so.
How far away I am; how often I have felt the great distance during this last year, of my critical health situation; and dear Steve’s death when I would so dearly have loved to hug and support my wonderful sis; and now this mega-drama of the apparent spiral of ill-health of mum and dad. They are fading, those two glorious parents who I have been more than blessed to have. I want the chance to spend a bunch more time with them, to support them as best I can now when surely they need me more than ever.
I could jump on a plane and make the great flap down-Under, any time the doctors have variously said. But with appended words and implications that I should not consider that I have fully passed the ‘danger zone’ yet, and would ‘wisely’ wait a while longer, until my body is more recovered, more able to withstand the rigours of that long flight. Considering how utterly gutted I was from the five hour drive the other night from Italy, and how exhausted I become from very little activity still now, the advise rings true. I must trust to know the time to hang caution to the wind and just go.
And now what a happy birthday Sis – arriving to muth and futh just in time to have muth carried off to hospital, the pain too much to bear and her invalidity too much for futh and ock to manage. And this morning on the phone, for the first time futh sounded so exhausted by it all, and desparate that the time has not come, trying to talk up the possibility of her returning home in a few days . As she was too, when I briefly talked to her in hospital)to prepare herself for the operation. I wonder if she’ll make it to the operation. The pain must be truly awful that she is admitting to it so easily, and she really seems to have lost that indomitable spirit she has always had. I wonder if She has heard the owl call her name?
She has, it seems, though how long it really will be before she really departs is still a question. I spoke to her tonight and she seemed to be convinced that the final day had come. Well, although that remains to be be seen, it was a beautiful and powerful leave-taking for us both, and whatever transpires from now, still this has been a huge step towards our resolution with each other. Not that we have had any unresolved things to close between us, except the life itself that has run between us all these fifty eight years. And there’s no unfinished business between us, of that I feel sure.
She says that she slept pretty well, but today feels awful, and very confused. Talking with Ock a little later confirmed this, though the nurses who she’s been confiding with say that she’s fine and could last for ages yet. Who to believe? We shall see. In any case, apparently she won’t be coming home again. Or so they say. My mum’s such a remarkable woman that I wouldn’t be surprised if she dies today, or if she cruises beyond this deep rough patch she’s arrived at, and we still manage to celebrate together Christmas, or birthdays in February.
We had the chance this evening anyway, to reaffirm the gratitude we both have for our lives and the love we have been blessed to know. I reminded her how amazed I had been whenever she has said that she felt that if anybody would have bad luck, it would be me. Whereas I have always felt that I have been so blessed by life, to have been able to experience so much, to have adventured so freely as I have, to feel so feted by many real friends all around the world that I could ‘stay out’ so long. She agreed, and feels the same of her own life.
I said that I could never have imagined having two more wonderful parents as they. And how much I appreciate their glorious wisdom, that they have managed to cultivate such a relationship with their two kids. Let’s face it, we have surely honoured them with more than their share of challenges in both of us, having more than our share of eccentricities for them to face and absorb. It can’t have been easy at all, feeling the censure of their friends and peers along the way, who had apparently ‘normal’ kids with varying degrees of ‘success’, while their two veered off on unconventional tangents, busted for ganja and mushrooms, getting my Sue pregnant at sixteen, performing so considerably below my anticipated academic excellence and consequent fine occupation, instead smoking dope and wandering the world, dropping out in the rainforest of northern New South Wales, building a thatched hairy house, and a hippy mud-brick house hewed and slushed on site using as many local materials as possible; or meditating or demonstrating to save the forest, or protesting against developents, teaching English in faraway eastern lands, being the ‘hippiest hippies'(ho ho) in Nepal, working for years gratis in dirty bloody India. Et cetera et cetera.
Anyway, we didn’t talk about all that this time, but declared our infinite love for each other, that we would miss each other dearly. We cried and laughted together, probably for one last time. I wondered to her if we might ever meet again in that other realm folk talk about, but it was rather tongue in cheek and actually I don’t think either of us subscribes to it anyway. I don’t surely, preferring the notion that we are all part of the same big soup that never ends, and from time to time we may have access to different souls in different times and places. No, closer than that I can’t buy the reincarnation rave convincingly either.
I don’t expect to pass that way, but oh how glad I’d be to live more life with that remarkable soul to while away more time with. She expressed how good it had been recently to have shared such wonderful raves together in all the long phone calls we’ve had. That’s so true; deep and passionate ones, and many of them.
We finally signed off, both of us crying and vowing our love and gratitude for each other. So may she live a whole bunch longer, recovered and serenely rested, but should she not then so be it. I’m thankful for this evening to have been able to make our beautiful leave-taking from each other gracefully and heartfully.
Oh such limitless unconditional love I have felt from them always, never doubting for a moment that no matter what I would do, how low I might fall, that their love would never be compromised or dulled, that it was absolutely without limits whatever should happen. What a lucky fellow I am to have them, to always have them even when death parts us physically.
I have actually watched them age once or twice – the dope bust was one, and the pregnancy another – yet each time they swallowed it, gently said their piece, somehow managed to find their peace with it, and supported me through the trauma. Making us stronger and closer each time, since we have truly shared those times as much as we were capable.
I think that is such a significant rite of passage for us all who are parents; to have and know the capacity to transform our relationships from being simply parents and kids, which can never be negated or dissolved, to being adults together each to support each other, to respect and appreciate each other, for we each have more and more different experiences as we grow and mature and age. Ah what a richness so many people miss out on. What a tragedy, that is repeated, I perceive, infinitely times more than not. The alternatives of superficial ‘respectful’ , or acrimonious and bitterly divided, and more, are unthinkable, awful considerations.
So I wonder if, whenever I am able to make the big Flap downunder, we even will have the chance to continue this adventure together. What a hoot that would be.
“Goodnight, and maybe goodbye,” she said tonight, when we rang so shortly. Ock and Dad are taking it in turns to sleep by her bed. The end is nigh.
BUTTON, Audrey Joy. – Born in Stanley, Tasmania, February 10, 1927
– Died Hobart, Tasmania, November 5, 2012
Died peacefully on November 5, 2012 at St John’s Hospital after a short illness. Loving wife of Barrie for 62 happy years. Beloved mother of Christine (Cherry) and John and adored grand mother of Aruna and Shanti (Germany). Thanks to the wonderful caring hospital staff. At Audrey’s request there will be no funeral. Friends and family are invited to a gathering to celebrate Audrey’s life at Roches Beach Living Community Centre, 86 Mannata St, Lauderdale on Sunday November 11, 2012 at 2.30 pm. In lieu of flowers, those who wish may donate to Cancer Research
So it was just as she had wished it to be, just as she was. Perfect, serene, surrounded by and full of love.
I remember so clearly when I was just a little chobra, that the notion of being able to see the person you were phoning was absurd science fiction, never likely to become a reality. True my education level was low, and awareness no higher either, but how wrong was my scepticism. My dear mum dying on the other side of the world, and I’m right there with her and Dad and Sis, without leaving the sofa, by virtue of Skype. And not costing a cent either, come to think of it. So even with the sense of vast distance separating us, right alongside it is the sense of being absolutely together, sharing the profound experience together, the feely part, albeit without the touchy bit to boot.
And later, after Jayam had texted me about Aruna being so disconsolate having phoned mum to say goodbye, again I was able to be right with her, she in bed in Villingen, and me here on the sofa in Tuebingen. True, the hugging bit would have been a huge difference in this case (mum is near corpus non mentus, and physically in great discomfort), but being able to see each other as we talk so intimately makes such a huge difference.
I cried lots after that, mind you, feeling how wonderful it would be when finally my time comes to exit this life, if I can be with my darling daughters. Now especially Aruna I might say, yet that won’t be true I am sure, given the wonderful transformation of the closeness I have with Shanti during these past few years. So I will be sure to do all I can to be with Dad in his last moments, right by his side. And to make sure that I get down to him in the next couple of months, as soon as possible, given the limitations of my body’s state of robustness. No, to a point I won’t be stupid and go when the risk of drastic consequence is too great, but still, I would push myself ‘slightly’ past the marker of wisdom/folly to be there. That will be wonderful I am sure, to spend close time together in the twilight of his life. It’s not so long ago at all that I was almost certain that should muth go first, then he would follow very shortly. That may be true – and I could certainly understand it given their exquisite romance of 62 years together and the shock it will be when it’s broken – but the way he has responded to reality these last months has surprised and delighted me, and right now he genuinely appears to have transformed himself from an almost shadowy little man behind her remarkable fortitude, to a frail but strong and clear old man who has accepted the demise of his beloved, and will make his way okay beyond her absence, sure in the strength of his friendships and all the support of kith and kin.
“Don’t you worry about me, Tad. I’ve got so many wonderful friends who will take care of me, and it will be just great if you can come in a couple of months or so.”
And he sounds to be speaking the truth. Of course he can’t know just yet how he will fare, and he faces an extraordinary transformation of his life. And one that has unfolded incredibly fast in the end. Sure they have both been steadily deteriorating lately, but these past weeks have been such a lightning free-fall down to now, that he will surely hit a state of shock very soon. So I’ll get there when I can, and not a moment later.At the moment I must keep my fingers crossed that he will keep on living long and contented, grateful for all those wonderful sixty two years with the love of his life, and bask in the memory rather than wallow or despair in her absence. Still, if the hole of her absence is too insufferable, I won’t blame him for following close behind her. I just hope I can make the long flight before he does.
I can reconcile mum’s departure without my presence, but I’d really like to be by Dad’s side for his last days. I think we still have some wonderful sharings to uncover. Maybe it will be not easy or even possible for him, but it’d be worthwhile to give it a try anyway, and that process I’m sure we’d both enjoy and benefit from heaps.
Aruna had a pretty flat day today, probably not only because of her loss, but also the lateness of our converstation last night. It was another deep one though; she’s such a wise young woman, wiser for the remarkable experiences she’s had in her young life, including the final goodbye’s she’s experienced (her gros-oma, Steve, Grandma) and almost experienced with me. The ‘almost’ was a mighty gulp and phew to process too.
Sure it would be wonderful to be with everyone to share the celebration shindig for Muth, but with a little luck, and a little skype, I’ am as close as I can get to them all. If that didn’t work, as indeed it did not (thwarted by the vaguaries of sometimes not-so-worldwide web) then I sent this along in lieu:
“My dear mum. What a woman, as we all know. And if her remarkable qualities needed any proof, then I was surely the one to do the testing. I put my darling parents through heaps, and in spite of it, or maybe partly because of it, we only ever grew even closer. Ah the conversations we’ve had, the intimacies we’ve shared, the four of us. That there’ll be no more with mum, that’s sad, but she’ll always be with me, and I’ll always be grateful. Less than a day before she died, we said what we still needed to say, then goodbye to each other, crying together, laughing together, both from sadness, and from the joy we have known. I feel blessed with my family. Thanks mum.”
No doubt it will be an emotion-charged afternoon. She’ll draw mobs who’ll want to say goodbye. Now two days later, I feel okay with it, a gentle melancholy alongside the acceptance that she is gone, and a whole beautiful mixture of thoughts and emotions and memories that will no doubt keep on rolling out for a long long time. I hope I can record many of them, while they’re still fresh with her presence.
And they did indeed, turn up in mobs. More than two hundred of them, plus we weakly skypely, incoherent and mute on a bad line from the other side of the Big Ball. But there anyway. Technology has served us so well lately, and I don’t lament that it refused to fete us this one time.
Only vague ones of very early days, mostly coloured by the existence of occasionally browsed old photos, of sun-drenched days at Picnic point before the fear of skin cancer ensured we covered up rather than lolled around getting baked. Pink zinc was lathered on thickly mind you, and dawkers to shade the face, but only with the wisdom of days that ended painfully lobstered rather than fear of scalpel retributions as the years advanced.
Though I do have very clear memories of some occasions. Like the sense of jubilation I felt when of tne last day she rattled the kitchen drawer that contained the dreaded broken wooden cooking spoon, wielded so effectively as often as I merited it. The fact that it had lost one side of the ladel during conflict or accident rendered it even more efficient in inflicting punishment or the fear of it.
On this occasion though, I took off on the first rattle after the angry threat. I’ve no idea what I’d done to antagonise her, but don’t doubt my innocence (as rare as hen’s teeth). She was mighty quick on the draw from that drawer, but on that day I was quicker, even when she almost had me by the kitchen door. I was through and hurtling down the hall with her in hot pursuit. Round the corners of the stairs and bathroom, into the laundry and outside, scrambling down the laundry steps. She emerged from the kitchen door, looking down at me from the landing, puffing and furious. How well I remember the jubilation of that moment, the recognition of a breakthrough moment, a huge and life-changing victory. I was faster than my mum. The tyranny of the rattling drawer was over, would never terrify my again. Freedom.
To be honest, I can’t recall the consequences of that day, if I turned the tables and skited or antagonised her with my superiority (I really genuinely don’t think so), or even if she sought to regain ascendency. But it was definitely one of those pivotal change-points in life.
I do remember clearly though, the impact I inflicted on her when I was busted for grass and mushrooms. Just a few weeks after she had asked me (again, always the inquisitive and concerned parent in those times of anarchy and unfamiliar experimentation) if I had ever tried that marijuana stuff. She’d asked me once or twice before and I had denied her the truth; maybe this time it was the pleasant shared space of washing and drying the dinner dishes together that weakened my resolve for lying. Anyway, this time I admitted that I had.
“What’s it like,” she asked, wrong-footing me with her lack of negative reaction.
I did my best – inadequately I clearly recall – to describe the experience to one who had never tried it herself, but did manage to convey the pleasantness of it.
“Oh, that’s nice. Don’t get caught,” she counselled when I had done my best to answer her curiosity. Bless her for her tolerance and trust in those days of new hysteria about ‘reefer madness’ and the ‘killer sex weed’.
Three weeks later though, the police arrived one morning when I was alone in the house, and demanded to search my room. They found a jar of my dried mushies, and a wee stash of grass beside my little Indian brass hookah. A big ooops. How the two of them aged from that drama and it’s unknown consequences. That if finally resulted in a fine totally twenty five dollars did not reverse the aging effect the trauma had on them, especially on mum. That was a far bigger punishment for me than the legal one.
So she also has seen me through my darkest times before, and did this time too, even as her own life was surely ebbing from her. But she hung on to see me through it all, to assure me to her end of her unquenchable unassailable love for her son. Oh what grace I have received. How could I not live a miracle?
Jan 4, 2013 Train Villingen-Tuebingen
Stress again! Last night in Villingen and Robert and Sandra visited – how delightful as always with such dear and true friends. Oh yes, we WILL sail together in the summer. Lovely, albeit such conservative ones, each in their own individual ways. Both very clear about how kids should be raised, and the need for ‘consequence’ (consistancy) as a paramount. Noticeably uncomfortable with Shanti up and about at past midnight settling into a bowl of rice with milk and honey. But loving, and that is surely the key.
Beyond their expressed delight in my health progress, Sandra in no doubt as to the power of my attitude in the healing process, back from the edge. And relating he wonderful coincidence of her sister Andrea being assigned specifically to care of me (yes, among others, but few) in Intensive Care after my Cancer op in January, and how all were astounded by my attitude in the face of such a serious operation, since most others suffer their misery to the max. How come there isn’t some emphasis to help people – right from school age if parents aren’t capable of imparting it – to understand that the way we see our lives has such a grand bearing on the way our life pans out, including making a significant difference between Life and Death. How blessed I am to have simply received this attitude of ‘present-ness’ and perceiving the light in the dark. Nothing I ‘did’ to learn it, or deserve it, and even the gratitude I have that mum and dad imparted it is underpinned by recognising that actually they couldn’t have done any different either, since that’s just the way they were/are.
Yes and there was due acknowledgement of Jayam’s role and work in ensuring my transfer to Tuebingen. Hmm, am I perverse in recalling that she was so confident in Prof.Walter’s infallibility (me too I guess), and so embarrassed by Franci’s pushing him? Apparently she has white-glossed her role a touch too, amongst those who would hear it.
Not that I am ungrateful for all she has done for me, and the moreso during this last year, but really, there were rather long periods in which it was only Franci who was carrying the load for me, chasing and questioning every option and decision, bless her tenacity. And so Jayam again stoutly defended Prof. Walter’s position in the face of Franci’s ‘attack’ in his apparent reluctance in pushing for a more rapid transfer, her hassling to get me on that list. By Franci’s own admission, she went for him with full and magnificent dramatics when she could see my deterioration, declaring,
“My man is NOT going to die in your hospital, you understand!” Or words to that effect.
This is all a rather confused issue for me, full of details that I really don’t understand, but Christoph certainly expressed his appreciation and support for her terrier tenacity and perspective. I feel somewhat pulled assunder knowing that both women were doing as they felt was right. Is it even necessary to defend one in the face of the other anyway, since all turned out so fine?
Last night I didn’t let it become a major issue beyond referring to Christoph’s contrary opinion and in fact wishing to refer me for a second opinion to the hepatology specialist in Schwenningen who also takes a somewhat contrary view on such themes compared with Prof.Walter’. One could debate it to the end of time without clear resolution, but I strongly sense that Franci’s pushing – yes, in her less than delicate, can-be-intimidating feisty manner shaved clean of Deutsch niceties and politeness – DID play a role in hastening my transfer to Tuebingen and perhaps consequent rushing on to The List.
I had heard from the start to expect 12 to 18 months actually on the list waiting for an organ after all, and this was miraculously foreshortened to 8-10 days in the circumstances of the either/or choice, or lack of it, of either receiving a new organ immediately, or certainly becoming one more of those awful statistics that declare that every day in Germany, 3 people on The List die for a lack of organs! How does all this fit in the ongoing Transplant Scandal which particularly relates to liver transplant prioritisation on the List. Sure there was no exchange of money in my case to expedite my dramatic entry and rise on the List!
Anyway, the conversation with Robert and Sandra (which anyway had diverged into a theme over depicting old people making love on film and TV, with Robert hillariously expressing utter revulsion against wrinkly old folk bollocking in celluloid!) rightly shifted to Jayam’s situation material and relationships and emotional, and the looming presence of depression hanging over her with the absence of support as she struggles to keep head above water while raising 2 kids, at the virtual abandonment by friends when she needs them most, leaving her so lonely and bereft of hope or joy in her life. Her wish to just pack up and go to take care of herself; is that even remotely realistic given her absolute (understandable, even heroic) attachment to them. She says she would leave them to me to take care of, with the obvious implication that – of course – it would be in dear ole Villingen, where presumably I would move myself, tra-la-la, tra-la-li.
She so easily moves from self-pity to accusations: of my abandoning her with the kids and never taking my responsibility; the grand vision of her the heroine who single-handedly held the fort together while I scratched my balls wallowing in depression; my refusal to take (any?) work, to be the ‘normal’ papa; that I (and Franci) constantly take holidays all over the world forcing her to slave her pingies to the bone, paying for the girls to come to Oz with me (once), while all the rest was ignored as irrelevant (Oz, Bali, La Gomera et al), dismissed as inconsequential and imminently forgettable.
How it wearies me, this tired accumulated and accumulating story of accusation. How severely it stresses me. Finally crashing to bed at 2am to rise again shortly after 5, with my dear Shanti AND two rabid cats running riot upstairs. Oh yes how I love to sleep beside my little possum who so easily declares her need to have me nearby as often as possible, and preferably oftener. Perhaps the moreso now that we have so much more time together than has been possible for the last years, with physical distance since they came to Germany, since I crashed with this liver drama, but way before that with the absurd jealousy of Peter for my declared friendship and love for His Sybille and, more pertinently, my girls. She still blames me for the infrequence of my being with them, all the while that I felt an unwelcome intruder in their house, that it would take four hours travelling from Montescheno to reach them for a couple of hours of company, and her having so often set plans for them that precluded my being able to take them anyway, while of course having to accommodate whatever her schedule was when I made the opportunity for us to spend that little time together.
Anyway, blame and shame and guilt and indignation all conspire to ramp up the stress factor. Little wonder then that I woke up at the point of a disturbing dream when our actual sleeping situation was transposed to a delapidated almost-squat on a steep urban hillside with shadowy mafiosa-type persons demanding my co-operation and presence in the morning to what ends I don’t now, and me getting up early and walking around the neighbourhood for unknown reason and coming back to find that the whole street had already been totally destroyed by the developers who were now ready to finish up on ‘our’ squat. And in panic having to get to my family inside the house, while the sleazeball with the umbrella-cum-machine gun menaced me as if he might kill me before I could get to the girls!
Oh the ripe symbolism of guilt and shame and abandonment that I carry. Oh how the stress of Sybille’s accusation contributes to amplifying those deep woundings and guilt that I feel anyway in not having been able to hold together a relationship for my daughters as I was blessed with by my parents. What a big doozy, and all the more potent now even as a medium to destroy myself by being (the?) active ingredient of stress which could even have catalysed my cancer in the first place.
So now it is absolutely THE LAST thing I need to support my quest to rid myself once and for all of this Hepatitis C that could of course precipitate a return on the cycle of cyrrhosis-cancer-transplant etc and the face of Death again to meet and deal with . Ooh how much I still have to learn to transform my life to a point of inner peace to allow all my wisdom it’s full freedom of expression and manifestation. I MUST deal with this one before it seeks to deal with me. I must make my peace with myself and GIVE myself the permission and space to flower to my full glory. So much potential stifled by procrastination and unclarity that conspire to hold me back. Be clear and be strong. Be aware!
Catch the beasts of anger, reaction, hurt, resentment, meeting them face to face at the moment they rear their ugly heads. Give them no chance to get their clutches into me and feed themselves on my insecurities and shames and negativities. Let me reach for that mirror more often – daily even – and remind myself (honestly of course) that
“I love you John Button, and accept you just the way you are!”
January 11, 2013
And I do, I do, and I am getting where I wish to be, where I believe I am going. Today, at last the results arrived of the blood control of last week. When I rang the klinik before going off for my appointment with Julia, I received the curt:
“But Mr Button, didn’t I say yesterday to call in a few days!”
“Yes you certainly did, but I have an appointment with my Hausaertztin this morning, and I’m really very excited to get these results of my very first tests after starting the Interferon treatment. It’s extremely important to me you see.”
I guess she ‘saw’, and asked me to wait a moment and she’d check again. Sure enough, the results had arrived, so of course she could fax them through to my Doctor if my doctor phoned her. Ho bloody hum, the formalities here are surely more than elsewhere, or is it that the protocols are just given such an aura of ‘seriousness’ that the formalities just seem to be …. well, serious?
“Can you just tell me if there’s been any change in the virus levels? Please?”
Your virus levels have gone down a lot – less than 15.”
Another occasion, I suppose, of proof of how ignorant I make myself through not informing myself of the significance of the various numbers and chemical loads and values, and familiarising myself with all the latin names and fancy acronyms. So of course though I was very pleased to hear that the numbers were much smaller, I couldn’t actually compute the meaning of that ’15’.
When I got to the praxis and Julie came in beaming and congratulating me in terms of such joyful almost-incredulity, it began to sink in.
“You see,” she explained, realising my incomprehension, “The range of measurement I’m talking about is the range in which the hepatitis C is recognised, defined. That range begins at 15, and keeps on going up from there. When you started the interferone 3 weeks ago, can you remember that your figures were over 500?”
Oh yes, I could remember. The number ‘less than 15’ came sharply into focus, and just what it’s relevance was; in the space of three weeks treatment, my viral load had changed so dramatically (yes, as always, the drama queen) that I had actually gone off the scale, below the number conventionally represented as Hepatitis C. I did NOT have hepatitis C, after perhaps 30 years. I DO NOT have Hep C active in my body, at last.
“You know and I know,” I said to Julia, “That according to conventional medicine, anybody who has gone through a liver transplant, will have to keep on taking pills for ther rest of his life. Always. Now I’m taking 18 little and not so little pills a day, plus this one magical little €1000 needle so poetically named Pegasys, once a week. I know that needle and 5 of the pills will only go on for some months longer, but I also want you to know that sometime I will be the exception to that rule of Always, and the time will come when I won’t be taking any of them.”
“Believe me, John, I really want to believe you. And as soon as I met you, I knew that you were someone different, so who knows, I hope you’re right.”
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
I talked with my dear friends this evening, Peter and Pam, wanting to share the excitement of my revelation with such dear ones. How near we are, in spite of the great physical distances I have ‘made’ between us all these 23 years or so. Never more than a moment away though, always instantly inseparable the moment we meet again, however long the gaps in between. The time didn’t pass; it never happened at all. Why would gratitude not be the word of my life?
<!– Button, Audrey Joy–>