Just one 'waffeer thin' verse

Photo: Jan Stockwell

'The highest good is like water.
It flows in places men reject,
And so is like the Tao....'

Please bear with me a moment before I tell you what this is about. I promise, Scout's Honour, it won't take long. 

   If you've been following my postings for a long time you’ll know that a guiding light in my life has been the Tao te Ching [pinying translation of the name: Daodejing].

   When I began teaching the year-long course, the History of Asian Civilisations,   the Tao te Ching was allocated its own time-slot. The reason was that students needed time to start to understand the broad philosophy behind it, which I tried to explain in another series of postings.

   The Tao te Ching is somewhat cryptic, and like a set of instructions for doing something on the computer, it makes a lot more sense after the task is completed than before it.

   One other explanatory thing. Taoism has three strands; philosophical, religious and popular. Reading about Taoism on the web may take you to any one of the three. Concentrating on the Tao te Ching itself neatly avoids the trap of confusion amongst the three. I am talking here only of the philosophical strand.

   I've decided to take one of the ninety Tao te Ching verses that puzzled students, and explain it via just one translation. When you read it, don't be surprised if you don't get all of it. I'm going to try to unravel and exemplify it.

   This is the verse. It starts with the premise that order is the most desirable state, whether for the universe, society, or for a family. Following it is my explanation.

38

When a truly kind man does something, he leaves nothing undone.
When a just man does something, he leaves a great deal to be done.
When a disciplinarian does something and no one responds,
He rolls up his sleeves in an attempt to enforce order.

Therefore when Tao is lost, there is goodness.
When goodness is lost, there is kindness.
When kindness is lost, there is justice.
When justice is lost, there ritual.
Now ritual is the husk of faith and loyalty, the beginning of confusion.
...
It is the beginning of folly.

When a truly kind man does something, he leaves nothing undone.
[This relates to someone having a complete understanding of the nature of what they’re doing. Only a compassionate person achieves this level of awareness.]

When a just man does something, he leaves a great deal to be done.
[Justice means arbitrating between two or more people. Each may have a case. If so, one may still have a grievance once a decision is reached. I return to this below.]

When a disciplinarian does something and no one responds,
He rolls up his sleeves in an attempt to enforce order.
[Force or the threat of violence is going to be used in this case. Force may achieve a return to order, but leaving discontent, and often at horrific cost.

The paragraph that follows this details the stages in loss of order.

Therefore when Tao is lost, there is goodness.
[When all is in order, enough said. But if it’s not, then people have to be good to each other to keep things on the level.]

When goodness is lost, there is kindness.
[Taking a relationship as an example, the next step down from goodness is a willingness to be kind to each other, in an attempt to hold things together.]

When kindness is lost, there is justice.
[The relationship has deteriorated further. Now there's nothing for it but to have it come before the court. There's property involved; maybe kids as well.

When justice is lost, there is ritual.
[They decide to stick it out, maybe for the sake of the children. They simply go through the motions of normalcy in a ritualised way.]

Now ritual is the husk of faith and loyalty, the beginning of confusion.
[It becomes obvious that the relationship is a sham. Those in this relationship or affected closely by the behaviour of the parties suffer. Signals become more and more mixed. “...the beginning of confusion.”

It is the beginning of folly.
With no order to go by, the most extreme of events may occur. 

   I've used a modern example here to show that this ancient text can be applied to a social phenomenon which happens world-wide, even though it has variations according to local custom and religious tradition. 

   It could apply to countless other circumstances where they descend from an ordered or balanced state down a ladder of disorder into chaos. Some would point to climate change, civil war, the increased abuse of drugs, obesity and carcinogens, over-population and over-consumption.

   The Tao te Ching is all about how to deal with this at any stage – a mindset rather than a recipe. It does not say that all systems begin with perfection and decline thereafter, although we might be forgiven for seeing a great deal of what’s happening in the world showing signs of this descent. if not from a perfect start.

   Understanding the nature of a system or a problem provides a chance of returning it to order if it goes out of whack. If it can't be fixed, understanding it properly at least gives the best chance of coping with it.

   I'm sure you understand why this is uppermost in my mind at the moment.

___

Translation: Gia-fu Feng and Jane English

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A trip to the Oncologist

Source

We haven't visited my oncologist much. Two, maybe three times a year at most. That's because there's really not much he can do, which isn't to say he doesn’t watch over my progression carefully – he does. But in practical terms, he sanctions minor adjustments to meds – that’s about it.

   He’s good at his job. I regard him as one of the best. Not that I've got all that much experience in ranking oncologists, but I can tell - and so it appears can the hoards of patients he has.

   But today we met probably for the last time. We prepared for the visit by listing a number of points about how things had gone since the last time we’d seen him. That was only two months ago, and the smaller gap between visits was because we knew my condition was deteriorating quite rapidly.

   Going out anywhere for me now is quite a hassle. It begins right here where I'm sitting. With the aid of the chair I crank myself up so I can stand. The steel frame is ahead of me. I grasp the left handlegrip firmly while the right hand waves its way towards its grip.

   I usually miss it. The spasticity of the hand tends to guarantee that result, no matter how carefully I try to guide it to its target. Sometimes I get it right, but the fingers are hopelessly curled.

   Tracey is often there, which makes it easier. She opens my uncooperative right hand and spreads my fingers along the grip. Then she locks the thumb on.

   Now I have the chance to maintain balance.

   The object of the exercise in yesterday’s case was to get me into the wheelchair. For that, I must turn myself at 180º on getting up from the chair. My left foot is the agile one, so it must do the twisting and turning little by little while I balance using the frame, and drag the right leg into position an inch at a time.

   This means moving in a clockwise direction. I can't balance on the right foot, you see, in order to go the other way. By this time it is curled awkwardly. Moving it backwards turns out best.

   I did the 180º turn eventually and Tracey had the wheelchair behind me. Sitting in it was trickier than you might think. The right knee was locked, and unlocking it suddenly might have brought me crashing down.

   “Keep your right arm in as you sit,” Tracey reminded me. Failing to do that means the ridiculously sensitive skin of the right arm is raked by the wheelchair arm, and will look like someone’s tried to skin me alive.

   I kept my right arm in, allowed the right knee to unlock as gently as possible, took the weight with my left arm and hand, and eased myself down.

   “A journey of a thousand metres begins with a successful sitdown in the wheelchair.” [Ancient Buddhist proverb.]

   The next tricky bit was the transfer to the car. Christian was away so this was a two-person job instead of the usual three. I've decided to spare you a description, and spare you one of getting out of the car into the wheelchair at the hospital. Every transfer is fraught with danger, but we made it unscathed.

   We’ve taken a full half hour to do the five-minute trip from home to surgery. When I could walk to the car, not long ago, it would take four minutes.

   The waiting room was chock-a-block full. Tracey was forced to stand beside me until a chair was vacated. My appointment was for 2.30.

   We needn’t have hurried. The Melbourne Cup [3 pm start] came and went. It provided some entertainment at least. I'd forgotten what a buzz the Cup gave the once-a-year experts.

   Our turn came. Tracey wheeled me in, and Nick greeted us warmly. We’d got to know him quite well over the four years and there was a mutual trust among us and with Pam, the Head of the Public Hospital Oncology unit. They had all the relevant notes and Tracey gave a copy of ours to each of them.

   There were no surprises. We all knew each other well enough for Nick not to offer hope, as he might have done to people different to us, of yet more proteinuria tests in a few weeks and another possible burst of Avastin. We knew that it had done a great job but had outlived its usefulness and was likely now to do more harm than good. Clearly. he and Pam both agreed with us on this.

   “Now is the time to do everything and anything you want,” he said, “Eat your favourite foods, have a glass or two of wine.”

   “We already do,” Tracey told him.

   He came from behind his desk and, with the warmth of a friend,  shook my left hand.

   Pam leaned down and put her arms round me. “Hug,” she said. “Give me a hug.”

   “You were always bossy,” I hugged. We laughed.

   In a few minutes we’d be driving the short trip home, with a careful transfer at both ends, and I'd be back in my chair again. But as we rolled out of the surgery, the sun was warm on my face, and the breeze had settled. Parrots were chattering in the trees across the road.

   It all seemed strangely new.

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Where have I been? Where to from here?

25 September 2013 will probably end up being a memorable date in my medical history. It will almost certainly mark the date of my final dose of Avastin. It was exactly three years ago that treatment with the drug began.

   On 3 December 2009 I got the first warning that I had a brain tumour. We had it confirmed on 19 December and I was operated on almost immediately to have as much as possible of the GBM[4] removed.

   From January to early March 2010, I had oral chemotherapy and radiotherapy in Melbourne to attack the visible remainder and inhibit the spread of the tumour’s tentacles through the neural network.

   When I returned to Armidale I began a course of intravenous chemotherapy but it became clear by mid-2010 that I would die within months.

   So far, this fits the standard pattern of life expectancy for a GBM patient of any age. About ten months after diagnosis, on or after conventional treatment, you die.

   I firmly believe that we followed best practice up to that point. Given that you're told after diagnosis you have three months to live if you do nothing, there's no time for experimenting with non-invasive treatments.

   Steve Jobs of Apple fame experimented with such treatments and admitted shortly before his death from pancreatic cancer that he had mucked around too long with useless remedies, and that delay was going to hasten his death. He should, he said, have gone straight for conventional treatments and he believed that if he had, he would have lived longer.

   I think so too, but it's only my opinion and yours may differ. That's fine, but just make sure it’s based on informed sources. There's plenty of rubbish floating about on the net and if you take it at face value it can look convincing enough.

   Everything changed for me when I began taking Avastin intravenously in September 2010. It was like a cripple being cured. Well, almost. Let's not get too carried away. I knew it was just a stay of execution, so to speak, and with luck I might get 6-9 months tolerable life out of the expensive brew.

   With care, scrupulous hygiene, avoidance of infection by unnecessary contact, with love and good management, I got an amazing three further years of life from an infusion of Avastin every three weeks.

   During that time, the slow but inexorable slide to poorer and poorer physical health occurred, as the tumour regained its strength – in recent months at an exponential rate. 

   Mentally, the slide has been slower, but I know and Tracey knows the falloff in mental performance is there, masked on this blog by taking hours to compose and type a few paragraphs, by spell-checkers and strategic use of search engines.

   Avastin was never designed to treat a patient for three+ years. A year, maybe eighteen months – stretching it. And yet I went on, every three weeks, conscious that the proteinuria count was showing decreasing capacity of my kidneys, and maybe other organs, to cope with Avastin’s side-effects.

   The nature of the dreaded seizures also changed. It was as if the neural paths in the brain for instructions to the right arm and leg had all but burned out. Just a few more neurons to shatter on the right side – the gripping capacity of the opposable thumb, the proper working of muscles for the throat, the eye and the mouth. It's still working on those neural pathways, but occupation is almost complete.

   That's the pathway to this point. It's not a crossroads. There are no other options as far as I'm concerned. But let’s be clear – it's not an end point either. Not yet. 25 September was a month ago and my rate of decline is still constant, but I continue to have cognition, a hand to type with, and a computer to store the data. And I'm still me. Well, I hope so. I believe so. You can tell me if or when I start acting like someone else.

   It happens. If a node of this tumour appears in the ‘personality’ area of the brain, I may well become someone else. Someone you wouldn't want to know.

   But not so far, I hope. Losing my identity is one of the few fears for the future that I have – fears which have appeared in my consciousness at least. Others will surface, no doubt. I don't pretend to be bloody Superman.

My trusty "electric chair"

   I've had nearly four years to arrive here and to think about this. Not all with a terminal condition have that luxury, if I can call it that. Avastin doesn't work for everyone with a GBM brain tumour. It worked for me but now it can do no more.

   I accept that.

   If you imagine that I'm going to take to my bed and just wait till the brain tumour takes over, forget it. I'm not. But if you think I'm going to go for one or more invasive treatments, I'm not doing that either.

   My body has had a lifetime dose of rays of varying wavelength through radiotherapy and x-rays. That's out.

   Further chemotherapy we know to be ineffective.

   Surgery might do some temporary good - or may make my condition far worse. Whatever life of fair quality remaining could be lost.

   I'm not up for the hassle. I don't do odds-on betting. I’ll take my chances with what I have left. We have some measure of that and it's one of the few things over which I have control. The decision, I mean.

   Seizures quietly continue their destructive path, each time taking a bit more. If I close my left eye and view my world through the right, it is a very blurred interpretation of what I know to be there. If I had to rely on it alone, it would be maddening. And it will get worse. The left is still good, when I'm alert. Sometimes I touch the right corner of my mouth and find the skin around it slightly moist. A few more seizures in that area and I may be drooling.

   There are many wild cards in the deck. Heart failure and stroke I place at the top. There's no way to predict those and if there were, so what? Better to leave that in the lap of the gods. That's my preference.

   I’ll fight to be able to sit on a toilet or, as I have found necessary, a commode. Stomach problems increase while mobility declines. This is a very bad combination. I loathe the commode, but have you considered the alternatives?  

   I will fight to shuffle along using this steel frame. Tremors of the right arm and leg, sometimes violent, are proving to be my worst enemy, physically. I didn't expect that. I’ll accept the wheelchair, but only because it reduces risk. But I will move these arms and legs, the right-side ones pitifully if that's how it's to be – and it often is – rather than have my world limited to a bed.

   I’ll accept limitations that must be borne, but work with what I have, and what the world is willing to offer me. I know only too well on whose shoulders my future rests.

Photo: Tracey James

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Sympathy, identity and other Carer stuff – Guest Posting

Tracey James: Carer

In a comment recently I suggested to Tracey that she ought to do a guest posting on what it was really like to be a Carer.

She refused, and then thought about it. 

"Maybe I will," she said, "but I doubt that you'll publish it. I'll write it anyway – it'll be cathartic. You may not like it."

There were indeed things about it I did not like. I made a note on it.

You're right. In some ways, I do not want to publish this without some modifications, but I will do so, not a word changed. If I don't publish it as is, then my blog becomes a lie, and it would mean that how you feel is less to me than what I believe some people may think – of me as well. And because you mean everything to me, it would be dishonest not to. I love you.

This is the posting probably every other carer in the country – maybe the world – would like to post, but for a number of reasons, never would. Here it is.

    I have a super power.   

I am an invisible woman.  

Every week I get the handsome sum of $57.70 from the government for being a ‘Carer’.

Lord knows I don’t do it for the money. I also don’t do it because I live to serve, although there are people who seem to cast me in that role.

As a full-time Carer I have not been able to work for nearly four years and, golly gosh, I have no idea what sort of job may await me after being out of the work-force all these years, while saving the powers-that-be lots of cash in the process. I have two degrees and I do not consider myself a dummy but that is still a scary prospect.

The landlord, Coles and electricity company are not going to give two hoots that I have spent all these years doing as good a job as I can muster, trying to emulate Mother Teresa, giving it my best shot at curing the sick and attempting to be sweetness and light to everyone I meet.

That is not always particularly difficult. I don’t actually get to speak to many people in the flesh.

Did you know that when you sell something on the local buy, swap and sell site that a real flesh and blood person from the outside world actually comes to your house? If they are agreeable you might even get to have a little chatty poo with them for a few minutes. Amazing.

Virtually every single person who has come to our house to visit in the last four years has come to visit Denis...with me sort of tacked on. Yes, they are happy to see me too, or in some cases meet me for the first and probably only time.

But, they come for Denis (or themselves). Because he is dying.

I have often thought it is almost like only one person lives in this house. The patient is the primary consideration in all things and that is as it should be. But here’s the thing. They are not the only consideration, because there are also two other people who live here. It doesn’t often feel like that.

Imagine someone told you that as of today you were only able to leave the house maybe once a week and when you did, you were going to have time to go to Coles or the chemist. Or, on a very exciting day, both. Every other thing that you ever did and loved to do would stop. As of today. For years.

Don’t confuse this with simply not going out because you don’t feel like it, can’t afford it, having no one to go out with or nowhere to go. This is about not being able to simply walk around the block in case someone has a fall, needs the toilet commode, has a seizure, a stroke, a heart attack...

Imagine on your outing to Coles or the chemist that you bump into someone and they exclaim how it is years since they saw you and they ask all about Denis and how he is and then on parting call you Mandy because they have forgotten your name. Even though you have actually known them for years and longer than Denis ever did, and you spent weeks working with them on that routine you choreographed for them...

Imagine when someone you are currently friends with on Facebook looks blankly at you, even after you speak to them, because you are long, long forgotten in the mists of time and past days of social activity.

I have a super power. I am an invisible woman.

You can’t really imagine these things, no matter how much you think you can, and I don’t really expect you to be able to. None of this is me complaining. It is just how things are. It is almost like some sort of interesting social experiment. Except that the characters are real and the situation is dire.

There was this day.

We had been woken by Denis having a string of violent seizures. There is nothing to do while they are happening, but I always try to be there, do what little I can, be comforting and watch the clock in case the ambulance needs to be called. Afterwards, I organised Denis as I always did, got his breakfast, his medications, spent an hour helping him undress and shower and then dried him, had him dressed and sitting comfortably out in his study at his computer and hey presto...THE DOOR BELL RINGS.

So, I stopped everything and made the mandatory cups of tea and got the biscuits out for the unannounced, unexpected visitors and tried to be social while being extremely preoccupied by stupid things like knowing that if I didn’t get the washing on right now, before they left and Denis went back to bed (the laundry only accessible through the bedroom and ensuite) that I couldn’t do it today.

I had held my bladder for an hour after waking while attending to Denis. I was now sitting there in my pjs and dressing gown feeling dishevelled and self-conscious. It was lunchtime and I hadn’t had a moment for myself, to shower or dress or even have breakfast.

As the visitors were leaving they said all their lovely goodbyes to Denis then one turned to me while going out the door and said “And you...GET DRESSED!”

Injustice stings.


Patients are designated as people. People are designated as people. Carers are non-people.

It is totally acceptable, expected and even encouraged for a patient to:
Talk about themselves and their medical problems
Get stressed, emotional, fearful and therefore sometimes upset & irrational
Moan about daily stresses, big problems and smaller inconveniences
Be upset about loss of independence

As ‘a person’ it is totally acceptable for people to:
Talk about themselves and their medical problems
Get stressed, emotional, fearful and sometimes upset & irrational
Moan about daily stresses, big problems and smaller inconveniences
Be upset about loss of independence

I have found that it is totally socially unacceptable for a Carer to:
Talk about themselves & their medical problems (because their loved one is so much worse off)
Get stressed, emotional, fearful and sometimes upset & irrational (because their loved one is so much worse off)
Moan about daily stresses, big problems and smaller inconveniences (because their loved one is so much worse off)
Be upset about loss of independence (because their loved one is so much worse off)

As a non-person there is also the additional delight that it appears to be perfectly acceptable for people to burden me with absolutely anything at all. Being a Carer somehow gives people carte blanche to tell me about anything from their latest crisis and their inability to cope with something, to their medical woes. I think I could do up a medical file on practically every person I have spoken to in the last four years.


Sympathy. What a useless concept.

The other day I had run the gauntlet at Coles. By that I mean fending off the usual round of Denis questions from a number of well-meaning people, with time running short before the paid Home Care lady would expect to be leaving our house. That is emotionally tiring. You start to feel like a cracked record giving the same gloomy report over and over.

I got to the check-out and was asked again about Denis. This time I said something totally factual. I didn’t say it harshly or with any inference. I said “Still alive, still dying.” Now you may be as shocked as the cashier was but I’m taking that risk. She recoiled and exclaimed “You might try to be a bit more sympathetic!”

She’s right. I am not sympathetic. I did not sympathetically get up three times that night during a short night’s sleep and wash out the poo in the toilet commode and then sympathetically continue to wash it out nearly every hour the following day. Nor did I sympathetically keep emptying the urine bottle or wash the blood off the sheets from who knows what. I did not sympathetically clean the urine that missed its correct destination off the carpet and Christian and I did not lift Denis up off the floor after yet another fall, with any sort of sympathy. Nor did I do a million other little things during that particularly bad day for Denis out of sympathy.

I did it and continue to do it out of the utmost love and respect for Denis as my husband and as a person. I do it not because I am paid or because people think I should or simply expect me to. I do it because I actually genuinely care, in the very real and complete sense of that word.

One day I will get to be a person again too. In the meantime, I will be a Carer because it is a damn sight more effective than just feeling sorry for him.


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The stifling of independence

Two walking frames that I use. The one on the left is a very sturdy one which is best for around-the-house use, while the light one on the right is best for getting in and out of the bathroom.

It's something that's happened countless times in all periods of history and all cultures. It happens because people develop an illness where they lose mobility by degrees until they are incapable of critical faculties and management of bodily functions.

   I have such an illness, but I’m not quite at that critical stage. I’m close to it now. I'm inside a body that I can describe only as feeling like a peg that's being hammered into the ground.

   I'm not in the least interested in sympathy. I want to tell healthy people such as I was a few years ago something you probably won’t understand. “It’s only the wearer who knows where the shoe pinches” goes the old saying, and it's as close to an absolute truth as we get in this world of relativity.

   Not even the carer, even one like a spouse or partner, can quite understand the pain of dependence. They have their own pain, seeing their loved one suffer, and all that goes with being the one depended upon more and more as the illness takes hold, and steals so much from both.

   The problem with independence is that we take it for granted in normal life. From the moment we leave the womb, the quest for independence begins, and it is one of the driving forces of life.

   No normal human being wants to be dependent. The toddler screams that they want to do it themselves, whatever "it" may be. The adolescent may become a sullen monster and (we hope temporarily) hate these stupid parents who dare to restrict their freedom in any way.

   This is an annoying, often painful and necessary pathway to adulthood, and yet the human race depends on it for its development. The arts and sciences wouldn't progress without it. Adaptation is necessary for survival and that is what independent thought amounts to.

   In every human lifetime, except in the case of sudden death, independence comes to an end. When its loss happens slowly, there may be some time to adapt – to improvise, as I've constantly done, or use equipment to compensate for loss. Even then, the time comes when there’s no further improvising. Dependence on equipment gives way more and more to dependence on people.

   I suppose I should speak only for myself. I don't mind depending on equipment, because it just sits there waiting to be used, but having to inconvenience others (usually Tracey) is another matter. If she happens to be close by, I don’t mind asking for help. But to buzz her to come from the other end of the house for a petty need when she’s undertaking some task there is another matter.

   She's said repeatedly that she doesn't mind. I believe her. But I mind. I'll deal with it myself if I think I can.

   Just now is a good example. I want to reach my bottle of water, on the right side table. It's just out of my reach from this sitting position, no matter how far I stretch. My right arm and hand are useless. To get it myself, I need to go through a series of operations; removing the laptop from the tray, then the tray, then the small blanket, placing it on the table, raising my chair, reaching for the frame, then dragging myself to my feet, gripping the handholds of the frame, moving the half-metre to the table, picking up the bottle with my good hand, putting it on a corner of the table where I can reach it from the chair, turning 180 degrees and repeating all those in reverse so I am sitting back here to type again.

   There are a myriad of little things that you don't think of when you have two hands. I surely didn't. Try putting toothpaste on your toothbrush using only one hand. No cheating now. Cutting fingernails. Try opening many sealed containers. Just one hand now. Peeling fruit. Cutting up food. Doing up buttons or zips. Taking a photo. All are designed for people with two hands. Funny that....

   What about legs? From walking reasonably normally in 2010, I began to take Tracey’s arm, for the sake of balance. My right leg started to drag and I battled to keep it usable. Recovery work was undone by the next seizure. Fewer and fewer brain signals have been getting through and now the ankle and knee joints have all but failed. I abandoned the rollator/walker and replaced it by zimmer frame. Increasingly I have become more wheelchair-dependent in a house never designed for it.

   But leave those aside. My point is that with this condition, my dependence on those around me continued to increase bit by bit but has now sky-rocketed. To return to the original metaphor, the peg is being driven into the turf relentlessly.

   I now realise something more keenly than ever just what those myriads of people who have come before me had to deal with, and what's on the agenda for those coming after. 

   With increased dependence, dignity and privacy are eroded. It's inevitable.

   Every mature person over their lifetime develops their own code for each. These are not quickly or easily set aside, not after a lifetime of living by that personal code. At a formal dinner party some guest is unlikely to ask you loudly, “Have you opened your bowels this morning?” In a hospital, it happens daily.

   To survive, you learn to accept violations of that lifetime code. Questions about bodily functions are necessary. Being disrobed unceremoniously in front of a stranger can't be avoided. Having your body prodded and probed in mysterious ways must be endured. Rationally, it's simple. Emotionally, it takes longer.

   This is no criticism of anyone, including myself. No-one needs feel any guilt. It's just stating the facts of life for a dependent person. Forgive the elderly who rail against being patronised or not listened to. What they’re hating is that they’ve lost their independence, and know they’ll never get it back.

   I don't really know how a person enduring dialysis, Motor Neurone disease, Multiple Sclerosis or pancreatic cancer feels, because I can't. I'm not them. I can be sympathetic – maybe now far more than most because of my experiences in the past few years. The person who takes care of them lovingly has the best idea. I can't even truly know just how Tracey feels, though I feel guilty every day knowing she has to cope with me as I am. Of course it's not my fault, but it's impossible not to feel responsible in some way.

   But when it comes to it, it truly is only the wearer who knows where that shoe pinches, and no-one else in the world. The shoes of us all pinch somewhere, and all have no choice but to deal with their own sore spots.

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Not the colour purple

It's funny where a sequence of thoughts can lead. A friend was saying how she thought a particular colour was puce; one I took to be khaki. 

   Quite a difference, you must admit. I had no doubt about the colour of puce, because of an incident that took place when I couldn't have been older than six.

   My mother was helping me in the bathroom with buttons on a new shirt – you know how tight the buttonholes on new shirts can be – when we heard a crash, the sound of which I'd not heard before in my short life, nor ever heard since.

   It was the explosive sound of a tall cabinet crashing to the floor with nearly every piece of crockery in it being smashed simultaneously.

   My baby sister, Kay, was a crawler at the time. No, a better description is a “wriggler”. She didn't exactly crawl; she wriggled along the lino on the uneven kitchen floor like well... a worm. In fact, Dad called her that – “Worm”. 

   She liked it when Dad did, but no-one else was given the privilege. They got a tongue-lashing from a less-than-one-year old who had a surprisingly large vocabulary. Some of its more colourful tinges she had learned by illicitly eavesdropping on Dad, and he tried to encourage her to unlearn them before she startled her mother.

   Fat chance of that. Unlike the Bourbons, she learned everything and forgot nothing, and knew just when to drop a new expletive into the dinnertime conversation.

   She had her own wicked streak, and on this occasion she thought it would be great fun to grab my sister Lyn by the ankles as she was putting away the cutlery. She was quite good at silently ambushing from behind.

   Thus it came to pass that Lyn found herself tackled like a rugby player, with nothing to save her but the knob on the cutlery drawer – one which, sad to relate, had been a temporary stuck-on job using Tarzan’s Grip. And like many temporary fixes in our home, it had acquired a degree of permanence that was neither intended nor desirable, regardless of the admirable adhesive qualities of Tarzan's Grip.

   The knob lost its permanent status the moment when Lyn, under sibling podiatrical attack, attempted to use it as an emergency hand-hold. Sadly, in the process, the tall, solid cabinet, unbeautiful in appearance but highly serviceable, began its descent.

   Apart from Lyn’s desperate effort to save herself, the floor’s unevenness was the cabinet’s reason for its downward journey, and it may have been in a precarious state of imbalance for ages. As well, it was somewhat overloaded at the top, containing, as it did, enough crockery for six perpetually hungry mouths. 

   Lyn jumped backward, taking Kay with her, clinging like a leech rather than a worm, which unlike the leech has no capacity for clinging to the human body.

   Kay’s steely grip was just as well, given that there was a fair chance that the descending cabinet would have crushed her little skull and its entire vocabulary like a passionfruit. Incidentally, I don't mean the little wild passionfruit that grew amongst the bougainvillea. The latter had thorns like No. 6 fish-hooks that we’d brave by crawling under to get those wild pashies. They were as hard as golf balls and you had to crack them with a hammer. I was comparing Kay's skull with the regular passionfruit. Now where was I?

   Oh yes. The descent of the cabinet. As described by Lyn in an email I received this morning:

It contained the dinner set that had been Grannie Wright's, and all that was left was the large platter.

   No-one was deemed to be at fault, although Lyn was greatly frightened that she would be in serious trouble for the devastation she felt she had wrought. Kay was later instructed as to the unwisdom of her little frolic, and she was so frightened by the sound of smashing china just centimetres from her little ears that she was only slightly insulted by the lectures she got consecutively from our parents about bringing anyone down in the presence of large cabinets which might become involved in her game.

   Happy as we were to share, family democracy decreed that Grannie’s large platter was insufficient for the family's crockery requirements, probably because there was a fear by my siblings that I would appropriate far more than my share at every meal. This was a true if unkind observation, and because I was not earning my keep at that stage by milking cows, the matter of a dinner set of some description was deemed a priority.

   Dad was the only one who could drive our first ever new car at that stage, so he set off for Gladstone to buy a replacement set – brand new from Friends Department Store, of course. You don't think we’d settle for less, surely? We were proud farming folk and we bought nothing second hand. Either it came from a shop out of a box from the manufacturer, or we did without it till we could pay for it. Right?

   Mum was a little concerned, not completely trusting my father’s ability in crockery aesthetics, but he had the car-keys and she didn’t. We needed crockery and whatever he bought would be it full stop. All she said just after he left on the expedition was, “Just as long as he doesn't come home with anything puce pink....”

   Puce may have been Marie-Antoinette’s favourite colour, but it wasn’t Mum's, and I inherited a distaste for the colour ever since.

   In the fullness of time, as bad story-tellers and shonky British Prime Ministers say, Dad returned, beaming, triumphant. We were crockeried once more. Out from the tissue wrappers in the carton from Friends Department Store came the dinner-plates.

   These would be, and were, the plates we had until my dad died. They were adorned by large flowers with dark green stems, nicely painted, aesthetically arranged.

They were, needless to say, the pucest of puce pink.

Addendum: and here, thanks to my sister Jan for her wisdom in keeping it, is one of the bread and butter plates from Dad's choice. Magnolias. They weren't so bad, really.

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Legally assisted suicide

A programme I saw not long ago that made me think deeply. In my position you won’t be surprised. 

   A British man and his wife were entering a clinic in Switzerland. I noticed that as he entered, he looked for a secure hold on the door frame as he passed through, and by his gait, I knew immediately that his problem was neural.

   I was already aware that he’d come to that clinic to die, on that day. After all, that was what the programme was about. He was terminally ill, and his future was bleak, without hope of relief. He’d made a decision to do so, by the process Switzerland is now famous for, (or infamous, whichever way you look at it).

   Assisted suicide is its real name, but it's wrongly called euthanasia. That term has been hijacked, which is a pity. Euthanasia means nothing more than a “good death”. 

   Hands up all those who want a bad death? Not a lot, I see. However you want to die, whether by Dylan Thomas’s not going gentle and fighting in rage all the way, or by slipping quietly away in peace, you surely want what you regard as a good death.

   I'd like to see the unhijacking of the term, euthanasia. Let's unhook it from Assisted Suicide. Well, I will, but probably it will remain confused with many other things: suicide without any help from anyone else, encouragement to suicide, assisting someone else to die illegally, unnatural death of one sort or another right through to murder – everything that doesn't leave you to controlled palliative care but leads to premeditated death tends to be called euthanasia. 

   When people argue about it, they are often talking about different things. It annoys me sometimes that they don't agree at least what they're arguing about, and just muddy the waters.

Australia: Source

   Two things I want to clarify at this point. I do not seek assisted suicide for myself, but I'd like it to be available to anyone else who’s terminally ill (by any reasonable definition of the term). I don't want to get into discussion about suicide pacts by couples and the like right now, either.

   My focus here is on something more limited; legally assisting in the death of a person of sound mind but with a terminal illness – because they’ve reached a point that they want to die.

   That's exactly what this chap had come to Switzerland to do. He and his wife entered the clinic and sat down side by side in a lounge chair. He talked with his wife and the medical staff there about the process – not for the first time, obviously. This was the culmination of an extended discussion he’d had with them over a long period of time, after talking with his personal doctor. He had fulfilled their strict conditions.

   His wife was hesitant, but she had decided long before to support his wishes. She'd seen what he'd been through up to this point. Her acquiescence was an act of love.

   At one stage, when asked how about her feelings, she said she wished that he would have stayed so the family could have one last Christmas together, but she knew he felt he had had enough.

   I thought she was very brave.

   So this was the day. The process was unhurried and calm. He was given plenty of time to face exactly what he was doing, or to change his mind now that he was on the brink. Then came the irrevocable moment of decision. Once he had drunk this clear liquid, that would be it. Really it.

   He shared some chocolate with his wife and made some little joke to lighten the moment. I think part of the reason for the chocolate was that the liquid he was about to swallow was very unpleasant-tasting. There seemed a lot of it, but he’d been warned not to stop once he’d started. One last little kiss shared – a rather formal one, given they were surrounded discreetly by medical personnel. He smiled at her, gulped the liquid down.

   Within seconds, he laid his head on his wife’s shoulder, snored quietly and peacefully for no longer than a minute, gave a little convulsive movement, and his breathing stopped. The medical staff took his weight gently from his wife’s shoulder and proceeded with the preliminary formalities of declaring him dead.

   As far as I recall, his wife was very calm. She didn’t cry. After some time, she got up, and quietly walked out of the door. She was going back to England shortly after. I think his body was going back home on the same flight.

   I confess my first thought was how eerie it all must have been for her. She had walked in with her husband who had a few minutes before been smiling nervously and talkative, and she now walked out alone, knowing her husband was dead. She would get in the car, alone. Have a single seat on the plane.

   It was a premeditated act, a choice of death over life. Just how could she have felt?

   I can't imagine. Some state of numbed shock, surely, now that it had come to pass.

   He had found the peace he was ready for. I'll never begrudge him that. I'm not sure how long it would take her to do the same.

   I hope it wasn’t long.

[to be continued, I intend.]

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Stress, anxiety, fear. A letter from abroad

A couple of days ago I received an email regarding the Ten Point guide I wrote that appeared in newspapers and was discussed on radio and TV in various parts of the world, to which I responded thus:

On Fri, Oct 4, 2013 at 8:09 PM, Denis Wright ... wrote:

Dear Carlos,

You have asked [an excellent question].... Do I have your permission to place the parts of your letter below on the blog? If so, may I use your name or do you prefer to remain anonymous?

Mr Gomez readily agreed to be named. This is the question he asked:

How do you deal with your fear and anxiety under normal circumstances?  

For example in a job interview when you are under the pressure that if you want the job and you fear not to get it, then you become anxious, nervous and then you will have a bad performance during the interview.  

I think your advice deals with the “what”, so I was wondering if you would like to write something about the “how” to deal with fear and anxiety, let’s say under the normal circumstances of life....

I should say at the outset that I am no more qualified to answer such a question than any other person, except that I may have a little more life experience than most. Lack of formal qualifications is not going to stop me having a lash at it.

   Anxiety is a form of fear, usually regarded as lower level, but which can be crippling at times. Fear is an emotion that has been necessary for human survival from the beginning – for the survival of any sentient creature in fact. If you have no fear of anything, then you probably won’t last too long. 

   It triggers the ‘fight or flight’ response. Adrenalin is there to supplement it, for a good reason. But anxiety in our normal lives needs some thinking about, because it can be destructive if handled badly.

   So in any decision I make, the first question is, am I going to flee or fight? I don’t take that too literally most of the time, unless I’m being chased by a pack of wild dogs. So far so good on that one. It hasn’t been tested. I was charged by an argumentative bull once, and I chose flight. Fortunately I was close enough to the fence for that to be the best option.

   That job interview – I can decide either to do it, or not. In other words, fight and have a go at it, or flee and back out. I'm probably not going to do the latter. I can expect to be a bit stressed. I need the adrenalin to be at my best. 

   The next thing is to find out as much as I can about what I want to accomplish in order to help allay as many anxieties as possible about it. Take the mystery out of something, replace it with understanding, and I find a lot of the fear vanishes. It gives me confidence about handling it. Knowledge definitely is power.

   If finding out more about it makes me more rather than less anxious, I may have to reconsider the whole thing... look for someone to share ideas about it... listen to advice while keeping responsibility for whatever action I choose. Not everyone has a partner, but if you do, I suggest listening very carefully to their point of view, because every window on a decision opens a different way to view it. Your partner is inevitably affected by your actions and has a right to top consideration in your decisions.

   We create anxiety for ourselves by thinking we have to win every battle. We don't need to. There are times to compromise, and to be generous, even though we might have preferred some other result. What is the priority? What's the ultimate goal? What can we live with and accommodate what others want, and in consequence relieve our stress, without sacrificing something too important to give up?

   Get priorities right. I see people fighting all the time about things I regard as petty. The way to lessen stress and anxiety is to ask ourselves, what is the worst that can happen if we lose this particular battle? What if we swallow our pride and accept what seems to be a lesser option? Most importantly, why burn ourselves up with resentment over things that don’t really add value to our lives?
  
   The difficult area, if you are living the sort of life I imagine, is in personal relationships. In these we really have to establish our priorities. Relationships are subtle and infinitely variable. We don't go through life without taking a course of action we later believe wasn’t the best. 

   The worst thing we can do is dwell on it. Or maybe there's one worse – that is, not to contemplate it, and so go on repeating it. In that case, it's a wasted opportunity. 

   We should be generous, and I'm not talking about money (but don’t be mean with money – there are no top-dollar front row seats in any afterlife you might contemplate). If we're generous of spirit, we find our stress levels drop.

   You mentioned my 10 Points that seem to have made an impact I couldn't have imagined in various parts of the globe. I didn't write them just for people facing deathly crises in their lives, but as a touchstone for creating a less stressful life for all of us and those around us. All of that list applies to everyone, and many of the ten have been with me through life as I picked up wisdom from all kinds of sources. Some I know I could have benefited from much more had they passed beyond a superficial understanding earlier in my life. But who knows?

   If you are stressed or anxious, try to isolate exactly what the stressful element is. That's where you have to be ruthlessly honest with yourself. Then you can deal with it directly. 

   Of course, there are too many personality types and too many things that people get agitated about for me to start analysing each circumstance. One size doesn't fit all.

   But... if you want the advice my guru gave to me when I went for an interview for the only job I faced a panel, it was this: listen to the question you're being asked and answer it directly. Take time to do think about it first, if necessary. Don't be afraid to say, ‘I don’t know.’ Most important of all, just be yourself. 

   Be yourself. He stressed that last one. It must have worked. Well, something did.

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