THIS PART'S IMPORTANT!
For quick medical updates, click this WHAT'S NEW! link, or the one in the right side column under 'Additional Information.'
Latest WHAT'S NEW! update: Monday, 20 May 2013 4:05 PM.
If you read this, it saves me a lot of effort and precious time in emails.
Latest WHAT'S NEW! update: Monday, 20 May 2013 4:05 PM.
If you read this, it saves me a lot of effort and precious time in emails.
Thursday, March 31, 2011
So, I hope, it is to be with this story, which drags together many things from my conscious and subconscious self over decades. In trying to separate out the components of reality and illusion, I had no intention of focusing so much on my mother’s journey at the end of her life, yet it became so, and we haven’t quite finished with each other yet. I still have things to learn from her as the memories tumble out.
Leave a six gallon can of milk in the dairy fridge, and in the end the cream comes to the top.
I was saying at the end of the last part of this story that I believe the shock of losing one and, as seemed inevitable in her lifetime, two of her children played a large part in making my mother retreat mentally into a happier world, one over which she had control and with no need to try to face more of the pain that living in the present caused her.
Of course, the onset of dementia may well be a characteristic of advancing age in any case, and I have no qualification to speak of it apart from observation. 'Dementia' is a term that used always to have fearsome implications for me, but it no longer has. In fact, I suspect that slipping into this other self-created world is probably more a characteristic of strength of mind rather than weakness; an ability to hold on to and keep a structure for the reality chosen by the person that makes life bearable for them. Maybe even for those around them, as they know with absolute clarity that the time for taking full responsibility for that person has come.
In what was a profoundly painful period for Jan in particular, seeing the transition day by day of our mother from lucidity to this other world, it was obvious that Mum needed admission to a High Care facility where 24 hour monitoring was available. That transition doesn’t confine itself to neat conventional periods of wake and sleep, and the safety of the person and the endurance and sanity of the carer have both to be considered - for the sake of them both.
Miracles are composed mainly of hard work, I have discovered, and it was that sort of 'miracle' that enabled Jan and Ken to find a suitable place for her nearby. At this nursing home, Mum slipped almost completely into her world of the 1930s and 40s, though she was capable of making remarkable concessions to the present day when required. She always recognised Jan and Ken, and Lyn when she came to stay with Jan to share the load. Jan’s children and their children she found a bit confusing but she knew they were kin – her tribe. And quite a tribe in terms of sheer numbers it was!
As it became more and more obvious that the end for her was likely to come sooner rather than later, Tracey and I made plans to visit. This was something I badly wanted to do, but it was also a period where the effects of the brain tumour on me were starting to bite deep into my motor functions. Constant seizures following the suspension of now-redundant chemotherapy were rapidly destroying the connections between my brain and right side.
It wasn’t a great time for me to be on the road, but, because I wanted it to, Tracey would make it happen.
Yet I wondered what the effect of seeing me would be for Mum. I was fairly confident that she would recognise me, though I was not so sure she would know Tracey. I couldn’t guess how that part of her construed reality would work.
There was another point weighing on me. Would the sight of me clearly having gone through radical medical procedures upset her? Would the world she had retreated to have been compromised by seeing me as I was then? I had lost a good deal of my hair, especially from the craniotomy and on the left side of my head where the blasts of radiotherapy had done their job. I am sure I must have looked a good deal older than when I had driven down to see her a year or so before. At that time I was in near-perfect health, or so at least I thought. She then was in hospital and suffering the hallucinations I described in a previous part of this story.
I wasn’t at all sure nor what the consequences would be. There was only one way to find out.
Oddly enough, it was I who barely recognised her. Fortunately, it was one of her 'good' days, when she was feeling happy and animated. They weren’t always like that and Jan bore the brunt of the bad ones.
As we came into the communal area where she was, I saw this tiny old lady with quite long straight flowing grey hair. She was sitting alert and upright in a wheelchair, watching a large TV screen. I don’t think I ever saw her with longish straight hair before, as I was used to its being curled and short.
It took me longer to adjust my perception of her than she did of me.
She greeted Jan and Lyn in a matter of fact way, as if they had been sitting beside her all morning. In fact, that was pretty much how she greeted Tracey and me; the acknowledgement you would give to someone who had been and was around you most of the time. She talked to us both and used our names and was clearly happy to see us, but for her there was absolutely no novelty in our being there. We had never not been there! She was seeing us as she wanted us to be.
Yet she was in her world of her youth; the young teacher at Taragoola being courted by the brother of her landlady (that term ‘landlady’ is so wrong, but what should I call Aunty Daisy at that time?) On the big TV screen in front of her were ads and there were children in the ads. They were her school children. She identified them as they flashed on the screen.
‘Oh look! That’s Norman Jenson! Lovely little fellow. That’s (some other child she was teaching in 1938). Beautiful children.’ Then she would be the teacher, fully in control, and turn around to the other people sitting behind her.
‘You children are making a lot of noise!’ she reprimanded them in a strong teachery voice I had not heard her use for many decades – probably since when I was getting up to mischief as a kid. Some of them looked rather offended at being admonished by this tiny old lady when they were doing no more than eating their lunch, but they didn’t react. That was rather fortunate, as she would have told them sharply who was boss. But then she would carry on talking to us.
A lot of it was confused fragments of memory, not always from quite the same period. ‘Jan, you were a little devil sometimes,’ she rounded with a smile on a very surprised Jan. We all were taken aback by that, as Jan was the one of the four of us least likely to be thus described. Lyn and I looked at Jan and we all grinned.
I’m sure she must have been thinking of me. The description fits me all too well and Jan not at all. She then went on to describe some incident that happened up the paddock on the farm. To illustrate the tale, she gave a thin, piercing whistle that she used to call the cattledogs – a whistle that I hadn’t heard for half a century, and went on with the story, but it became muddled especially when new images appeared on the TV screen.
She then became very tired and almost fell asleep in the chair. We went with her to her room, and she lay down and slept.
In her mind, we were all there, somewhere around, all the time, and probably Kay too. We left quietly. We had done what we set out to do.
Tuesday, March 29, 2011
This short posting links four seemingly unrelated things for me.
Dipen Bhattacharya has been a good friend of mine for 20 years. It was his parents with whom I stayed while I was in Dhaka during the crisis that I have been describing in Dhaka: Diary of Conflict. He has lived for much of those 20 years in Los Angeles, and is an astrophysicist at the University of California, Riverside; a science fiction novelist, philosopher and literary critic. As is obvious, his scientific knowledge goes much beyond even the vast field of space research in which he is an expert. His knowledge of nuclear physics is considerable.
Linking these two things with the fact that my nephew Glenn and his wife live in Tokyo, what he has to say relates to their lives now, as well as to the future of Bangladesh, my fourth corner of this apparently strange rectangle.
Here is what he wrote very recently as the Japanese nuclear crisis deepens.
Eventually, the crisis at the Fukushima nuclear plant will be contained. But this nuclear drama has implications for Bangladesh.
Who needs radioactivity?
Nuclear electric power or not, we need radioactivity just to keep us warm. The radioactive breakdown of unstable nuclei within earth’s mantle and core is what keeps this planet warm and make tectonic movements possible.
But harnessing its energy is trickier than we thought. The workers in Fukushima Daiichi plant have been trying to get the plant under control for more than two weeks and the end is nowhere in sight.
I would cite four recent developments that are definitely worth mentioning:
- Two workers came in contact with radioactive water directly in reactor number 3 and had to be hospitalized. Their legs were exposed to 2 to 6 sieverts of radiation (remember world-wide yearly average dosage for humans range from 2,000 to 4,000 microsieverts, i.e., 2 to 4 millisieverts). Apparently, these workers show radiation burns on their legs. Experts blame TEPCO authorities for lax safety measures.
- Then there was a report that radiation in water in the turbine building of reactor number 2 spiked to give a reading of 10 million times normal. The culprit was I-134 (and not the usual I-131). Authorities soon recanted, the level was not 10 million times higher, but still 100,000 times higher, and the radioactive isotope was not I-134. The presence of I-134 would have meant that the reactor was undergoing fission as I-134 has a half-life of only 53 minutes. Such false measurements can happen in times of panic.
- There is now about a million gallons of radioactive water in these reactors. This has to be stored and decontaminated!
- The sea water adjacent to the plant shows radioactivity levels of close to 2,000 times the normal. It is expected that the vast ocean will disperse this radiation, but the radioactive water is migrating along the coast.
Lessons for Bangladesh
The radiation pollution has a way to move across space using wind and water. The recent contamination of ocean water near Fukushima nuclear plant and its subsequent movement along the coast should be a lesson to countries which are about to build their nuclear plants along river banks.
Imagine you have plant built on river Padma. A disaster that brings contaminated radioactive water through this lifeline will have an effect on the entire country. Radiation in sea quickly dissipates, but that is not the case for an inland river.
We may not have too many options regarding energy generation, but nuclear power is not a panacea for all countries. A nuclear plant built on a seismically active flood plain that is subjected to river erosion needs extensive and comprehensive risk analysis study.
Sunday, March 27, 2011
It’s been quite eventful really, the past 24 hours or so. After a day of general seediness, I developed a serious headache last night.
I’m not a person who’s ever been prone to headaches. True, I’ve had them in the past on those quite rare occasions when I’ve deserved them as a result of over-indulgence in ... various things that came from a Wine and Spirits Merchant.
The point is, even though I’m an utter woos in these matters, this was a thumper. To be serious, such things weigh heavily on my mind, I must confess. In this case, it could be the consequence of a number of things, and I’ve decided not to go into the possibilities right now. I’m pleased to say that the actual splitter of a headache has gone, though I still have foggy head syndrome.
That’s OK. I am all too used to that.
I slept for a good six hours after going to bed early, but I did have a strange experience. I was lying on a hospital bed. Beside me was a doctor I had never seen before in my life. If I wasn’t entirely naked on the bed, then most of me was. If she said anything to me, I can’t recall any of it. She was focused on my groin. That’s a bit weird, I can tell you.
Then, as if she had pressed some secret button like a bank manager does when there’s an attempted holdup, another medico appeared. He was standing behind her, and both were looking intently at me – again, and I was getting increasingly irritated by this – he was focused on an area below my navel and above my knees. Pretty well midway between them, in fact.
I was lying neither on my side nor on my back, at about a 45 degree angle but facing towards these two who I can only assume were doctors. After what seemed an eternity, the male blond curly-headed chap spoke, very slowly and precisely.
“What is technically apparent....”
Yes? I was thinking, truly irritated by now. Get on with it, you tosser....
I could hear butcher-birds or magpies warbling and the curtains in front of the windows showing evidence of light behind them, and I realised I was starting to wake. I was already between two layers of consciousness. No! Get on with it... say what you’ve got to say....
“As we come face to face with....”
My heart was pounding. Say it. Spit it out!! Now!
But I was now more awake than asleep. I closed my eyes and tried hard to get back into the dream, but it was too late. For whatever reason I was not going to find out what all this was about, the two of them still staring intently at the family jewels, but alternating with the dawn chorus, including a gaggle of kookaburras, laughing their heads off.
Shouldn't that be a giggle of kookaburras? Just what I need. Even the birds think it's a joke. Go back to sleep... quickly!
I thought if I scribbled down exactly what he said before I forgot it, then somehow this might lead me back to Dr Blondie-Shirley-Temple and his lady friend. I very much doubt it, though. A pity. I’d like the sod to stop beating about the bush and finish his sentence. I want to know what else I'm supposed to come face to face with.
Look, for whatever reason, I got signed up by some malevolent spirit for a brain tumour. If there’s something else I need to know, just come straight out with it, buster. But I do reckon I have my fair share on my plate as it stands. And keep your eyes off the cojones. Both of you. Both of them, too.
At least I don’t have a headache this morning, though obviously I'm feeling a bit bolshie. And yes, I have every intention of going on with 'Illusion, truth and reality' whether you like it or not!
*** Sigh ***
I get caught EVERY morning.
I have something to eat so that I can take my medications, make a cup of Curly Cloud green China tea, take it to the study, and turn on the computer. I open a new Word document and am about to strike the first key for the first character of the first word I will write today when
Meeeoooo oooo ooOWWWww www comes from outside. Bang on cue.
I can’t ignore it. She’s absolutely DYING of starvation after some eight whole hours of not having any ‘crunchies’. She’ll faint away and expire in front of my eyes. Ears, well.
Why can’t she mew so plaintively about 20 seconds earlier, before I’ve sat down and not after? Before the first sentence has formed in my mind, that brilliant inspirational piece that is now gone forever?
Meeeoooo oooo ooOWWWww www - bring food or I’ll pass out. I’ll lapse into a coma and die and you’ll be sorry the rest of your sorry life.
She’s an idiot. She could sleep warm, safe and snug in the house all night but no, she chooses outside.
So I get her a small amount of food and she eats about a tenth of it and wanders outside again.
She’s satisfied that the servant is still at hand – paw – and that she is still fully in control.
And then I realise that I have pretty much written about all this before, right here on this Blob. January 18, 2011. With pictures and everything. Go on - have a look. Click me.
Dammit. It’s not as if I don’t have a score of other things to write about!
What’s that you say? “I know who’s the idiot....”
I heard you. Don’t be impertinent.
Friday, March 25, 2011
This was in a letter today from John, husband of my youngest sister Kay, who nursed Kay through her battle with breast cancer, a struggle which, in spite of his heroic efforts, was lost in 2008. The letter was so interesting I asked him if I could share it with you, and he agreed. (Julia is John's and Kay's elder daughter. John lives in Melbourne, as does his younger daughter, Jessamy.) Here is his letter.
I don't know if you saw the movie Sliding Doors (it's just over a decade old). In it Gwyneth Paltrow's character's life can take one of two possible paths depending on whether she catches a train or not. Well yesterday Julia and I experienced one of those moments. Unlike the film, there was no real drama involved but I tell it to you as a small distraction for all of you from the ongoing worries of Japan and ongoing health issues.
Julia was keen for me to visit (and very much vice versa) so yesterday I flew up for the day. I had heard about a pretty special cafe called Greenhouse by Joost, which was temporarily set up on Sydney Harbour for only 6 weeks and was closing this Sunday. We decided to make a beeline there.
It is a self-sustaining café/bar made from several shipping containers and re-cycled materials - packing crates, conveyor belts - all manner of things. It was set up as a demo of possibilities by a driven, talented young Victorian guy called Joost Bakker. The temporary site he cleverly obtained has million-dollar views of Sydney Harbour.
All waste is composted and used to grow veggies and herbs in their rooftop gardens and waste cooking oil is converted to diesel to power generators. Wheat is ground into flour as required on site and butter, yoghurt and mozzarella are all made on site.
The concept has received such plaudits that he has been invited to do the same in prime positions in London, Milan and Berlin. He also has a really great young chef on board.
They are so popular they do not take bookings or even have a phone number. We knew there were always queues to get in (even the illustrious Matt Preston from Masterchef queued to get in). The web site mentioned breakfast until 11 and lunch from midday. We figured we would try for breakfast after the work crowd and before "the ladies who lunch". I was on an early flight. Julia caught the ferry across from Manly. I met her at the wharf and a short walk had us arriving at the cafe at about 9.30 - perfect timing ... or so we thought. Our hearts sank when we saw that nothing was been served and there was some sort of informational tour taking place for a small group of well-dressed people who appeared to know each other.
Now this is the Sliding Door moment - do we go away and come back and join a lunch queue OR boldly join the tour? Well we slid into the tour group. The tour concluded and I decided to admit to the guy taking the tour what we had done. The guy turned out to be the creator himself - Joost Bakker. He was so tickled with what we had done and the fact that I had flown from Melbourne that he asked us to join him for coffee and some beautiful macaroons. We chatted for at least half an hour - and his enthusiasm was marvellous. It was such a delightful, random thing to happen. Naturally we did have lunch there and some further dealings with our new friend.
I remember a line from a poem we covered in school (Slessor's "Five Visions of Captain Cook") where Cook had a choice of sailing East (like others before him) or West (towards the unknown) - "so Cook made choice, so Cook sailed Westabout, so men write poems in Australia". Naturally our choice was insignificant in comparison but the same concept applies - take a chance and sometimes you are rewarded.
I think Julia is my lucky charm - whenever I visit her we always stumble into something delightful. I think at those times we are both very open to having enjoyable moments.
Thanks for sharing this with us, John and Julia!
Wednesday, March 23, 2011
I guess I know now what it feels like to be a full-on junkie. You know the ones, those who must have their next hit just to feel normal, not to experience a high. I am vaguely disappointed that I have reached a similar stage without having that first glorious series of rushes that the injectors of heroin do. That feeling so wonderful that it seems worth whatever it takes to experience it again – and yet again – until the brain and body cry out for it in a fever that there is no escaping.
No high for the junkie then. No rush. Just relief, I am sure, when the drug starts coursing through the veins.
That’s the point where they know it’s all they have; or at least, to be told by those receptors in the brain that if they don’t have it, the body will be wracked by spasms and physical pain until the demon in the brain is satisfied, for the moment at least.
Of course, it’s the opposite for me, in a sense. My brain is demanding its hit of Avastin, which will come if all goes to the usual plan at 11.30 this morning. It’s telling me that it has to have this infusion to combat the rising power of the tumour; power that’s become so obvious to me in the past couple of days.
Don’t get me wrong. It’s not that I have had a lot of negative reactions in that time. On the contrary, in most ways, if there’s a copybook cycle for an Avastin junkie, this probably is it. I have had two, maybe four Panadol in the past three weeks, no more – the only extra-curricular medications, as it were, in the whole period, and I think those were times when I stayed up too late reading and writing, as is my wont.
I have had no seizures, no pains worthy of complaining about, and my bodily strength has improved, as I’ve mentioned before and won’t repeat again. I have been as lucid as I have ever been, barring periods of lapses of memory that everyone claims they are just as guilty of.
Perhaps. Maybe they say that to make me feel better. But in any case, it’s been good.
Yet I can now see the pattern starting to develop, coming up to my ninth dose of the drug. $52,200 worth, in small packages that look like saline solution, if we put it in the terms the manufacturers would be interested in.
The pattern. All feels well until the last few days of the cycle. With surprising suddenness, my limbs feel leaden, almost like that feeling after a seizure. I struggle to get out of the armchair. My balance is not good. Walking is a huge effort.
I can’t hold that knife in the right hand with enough power to cut, or without a tremor in the hand too strong to hold the knife in place. The angle of the wrist suddenly is back where it shouldn’t be, and the knife is almost parallel to the table. My speech is slightly slurred, as if my tongue has swollen. It hasn’t, but it seems so. Bleeding from skin areas, though slight, is hard to stop.
I feel irritable and dispirited. I know that Brian, my unwelcome stranger, is taking these few days to rebound with all the fury he can muster. He is putting out his tentacles again, reaching down, seeking blood that has been denied him for weeks until now. Foggy head syndrome is back with a vengeance, as sleep patterns are disrupted.
So at 11.30 am I will go to the ONCOLOGY section of the hospital. Oncology. I always hated the sound of that word, long before I ever thought how much intimacy we would share. It sounded as alien as it looked on a sign – a place where other people, very sick people are forced to go. Never I, who might find myself seeking treatment. But we are on very familiar terms these days.
I’ll probably feel the need for Tracey’s arm this time as we walk up the ramp. My body will feel the weight of a neutron star. The staff will be cheery and friendly as ever. They must have their bad days but it never shows. We’ll find something to joke about and I’ll stand on the scales, and complain that I have put on yet another kilo in spite of my best efforts. (That won’t be true - 'better efforts' is more accurate.)
I’ll go to the toilet, provide a specimen, and find a chair alongside everyone else. I’ll see who I know. They come and go, always some one or two new; others, I never see again. The ones who recognise me will smile, probably, unless they feel utterly miserable, which sometimes happens.
We are members of an exclusive club. What was it Groucho Marx famously said? I wouldn’t want to belong to any club who’d have me as a member.
I don’t want to belong to this club, but we are members nevertheless, so we make the best of it.
Then will come the worst part of the whole proceedings – finding a suitable vein. I have the feeling that this time it will be no problem, but I’ve been wrong before. I’ll try to pump up the arms a bit before we leave home, to make the veins sit up. In theory they should be better this time than when my arms were so weak the right one couldn’t support its own weight and I needed a sling.
I haven’t used that sling for many months. Cop that, Brian....
And then, all going well, there’ll be a short infusion of saline solution to ready things for the Avastin, and they’ll bring it in a little bag that they’ll cover with a black plastic hood, like it’s so special no-one’s allowed to look at it. Well, that’s sort of true, it’s nearly $6000 worth of pale liquid. That’s got to be special, I suppose.
It will take only half an hour to infuse, another saline burst to flush the system, and I’ll be allowed to go. We’ll make another appointment, round about 13 April I suppose. See you next time, she says.
Next time. Hmmm. The whole thing, all going smoothly, will take about an hour.
And again, all going smoothly, I will feel normal tomorrow, and the energy will flow back to me over the days. But I am pretty sure that the effect will run out just that bit sooner at the end of this coming cycle than the last, and in the final days before the next hit, Brian will probably take the opportunity to strengthen as much as possible, to be stronger for the next time than he is now. Little by little, he’ll try to gain power.
Let’s stop there and not try to predict too far. It’s pointless, and some wildcard event could intervene, as it has so often done before.
I’ll let you know how it goes.
Tuesday, March 22, 2011
Firstly, she grappled intellectually with the fact that if she were still seeing things that others were not, they were existing only in her own version of reality. By carefully checking what Jan and others round her were seeing and experiencing, and comparing those with her vision of the world, she was able to make the distinction between her reality and that of everyone else.
This is a good deal harder to do than you might imagine, and it is a tribute to her strength of mind that she was able to take this to the next logical step. She was able to push away the imagined things, still vivid and real enough to lurk there, and in time to lock them down in the darker recesses of her consciousness.
After some time with Jan, she was able to return to her unit and resume 'normal' life, though poor Jan and Ken had to be doubly alert with visits and phone calls to her about food, water and medications to allow her the degree of independence she still retained during that period.
But we all knew that it wasn’t going to last. Jan had had some indications for quite a while that Mum was not holding it all together all the time. For example, she was a fiercely competitive Scrabble player with a vast vocabulary, and if you sat down to a game with her you knew you were in for a tough contest which often ended in getting well and truly thrashed. Yet Jan told me during this time that she was having ‘some very peculiar’ games of Scrabble with Mum, which was both vaguely amusing and more obviously disturbing, as it was clear that Mum’s rational faculties were now struggling to retain their hold.
And I am sure she was well aware of that herself. In an email to me then (yes, at 89, she could still manage to cope with the technology), she wrote of how hard it was to write in her normal faultless English; how depressing to look up at what she had written and see it full of errors and to have to make the effort to correct them. Even more importantly, how hard it was for her to hold her thoughts together for long enough to get them down in a coherent form.
It was a letter from her lucid mind, still strongly dominant, that contained a warning. I could see, plain as day, what Jan was well aware of. I’m also certain, as I said, that Mum could see it herself. Sometime in the not too distant future, she would not be able to retain that discipline sufficiently to get through living on her own.
It was a message from an increasingly life-wearied mind, wracked also with the pain of losing Kay, her beloved youngest daughter, to breast cancer just two years before. Our dear youngest sister. It nearly broke her heart, but she bore it with fantastic courage and dignity.
Still, with Jan’s determination (and Lyn’s, when she came down to help lift the burden a little off Jan’s and Ken’s shoulders) to allow Mum the independence she craved, the weeks stretched to months. But little by little, the strings binding lucidity were loosening.
And then came the news that must have crushed her spirit completely. In December of that year, I was diagnosed with this highly aggressive brain tumour. Was it reasonable to expect that she would have to go through once again the terrible suffering of a parent to lose not one but two of her four children to a ruthless disease?
I don’t think so. There is little imaginable to compare with that cruelty. If one were forced to go on living, why would not one wish to find a more bearable place to dwell?
Saturday, March 19, 2011
Until very close to the end of her life, my mother was mentally very active. Physically, she had problems, a serious hearing deficit being one of them, but by using a good pair of headphones, she avidly watched the news and news commentary programmes, gardening and arts on the national broadcasting service, and read books voraciously.
In the early years of her marriage she looked after my father’s mother with great devotion to her duty until my grandmother’s death. This was not always easy, and it left her with one enduring determination that would stay with her the remainder of her life – she would remain as independent as she could until that became impossible. In fact, if she had had the choice, I suspect she would have quietly ‘slipped out of camp’ (to use Steve’s term) without disturbing any of her children.
But we don’t always have this choice. Each of my three sisters played an active role in ‘minding’ Mum’s independence, particularly Jan towards the end, at the most difficult stage. Lyn spent many years looking after her when she lived in Gladstone and when Mum was more active physically, and Kay had a longish stint caring for her when she took ill in Melbourne. It would be remiss of me not to add here that each of their husbands also looked after her as if she were their own mother. For most of that time, she lived in the way she liked best, in her own home, doing things the way she wanted, and imposing as little as possible on them all.
As you can see, I played almost no role in this, not that we wouldn’t have been happy to if she were living nearby or wanted to live here. It just didn’t work out that way, given our location.
I’m sorry to have to include things that may not seem relevant to the title, but I’m getting there. Bear with me.
Several times in her life, when she was undergoing operations involving physical pain, she given particular drugs to assist in pain relief and recovery. I’m not sure what these were exactly but they were standard drugs used for this purpose – pethedine based, I think. Often they induce hallucinations until their effects wear off, especially in older people. I remember each of my sisters at one time or another describing how my mother’s personality could change during periods of recovery where such drugs were used, quite startlingly at times.
As I wasn’t a witness to most of these I won’t try to make them part of this story. If it were to be told for some reason, Jan and Lyn are the ones who could do it, but you probably can see where this is heading. I am using these altered states of consciousness experienced by my mother to get at the broader question of what we perceive as reality and how deceptive that can be.
It’s safer for me to talk only about the episodes I witnessed personally. That way I won’t go off on quite so many tangents. I hope....
The first was in April 2009. Jan and Ken had been watching over my mother’s fairly independent existence at her unit not far from Jan’s. My mother was becoming increasingly forgetful, and if Jan didn’t keep a sharp eye on her, Mum would forget to eat and drink, so engrossed would she become in painting or reading or some other activity; then would realise she was famished and eat at odd times. As a complication, she rarely drank enough water, which dehydrated her system without her being aware of it.
This eventually made an emergency ambulance trip to hospital a necessity, and in convalescing she experienced the psychological effects of the drugs administered. They were quite severe and from Jan’s descriptions, she was inhabiting an alternate world until she got them well and truly out of her system.
On this particular occasion I drove down to visit her in hospital. By that time, although still strongly affected by the hallucinogenic qualities of the drugs, she was a bit more in touch with our world than she had been.
It had been a very disturbing time for her. Over and over again she went through the story, clearly inspired by her ambulance trip to the hospital and her time receiving the first bout of treatment. Jan had heard it all too often by the time I got there, but it was new to me to hear it from Mum’s lips for the first time. Very agitated, she described how she had been captured by these white coated people – kidnapped and taken from her home to this new place they kept calling her room but which wasn’t her home at all. She was making plans to escape or get a message of her whereabouts to Jan. She had even drawn maps, not that they would have helped much in a rescue mission I have to say. She must have managed to get up from her bed at times and walk some of the corridors before she was recaptured. She described with great animation strange rooms she had seen filled with white mounds of sheets, and looking down out of broad windows with Dali-esque perspectives, vertical walls that would slowly become horizontal, forms and shapes sliding and interlocking and disappearing. Kaleidoscopic patterns and colours that her fingers twitched to paint. And these shadowy figures, the kidnappers, constantly recapturing her and returning her to her bed - and this WASN’T her room.
In short, she was experienced a full-on psychedelic trip that would have done the 1970s mind-expanding gurus Alan Watts or Robert Zaehner proud, when they were conducting their experiments with LSD and mescalin, except that hers wasn’t a fun trip for the most part. She was trying to wrest back her freedom – from the place and the people she had been brought to, and probably mentally from the effects of the drugs as well.
Those were her constantly retold experiences of how she came to be where she was, right there on the 6th floor of the hospital. We came there together, Lyn as well as Jan and I when I first came to see her at that time, but her semi-lucid periods were increasing. Jan had heard it all before as it was running constantly through Mum’s consciousness and she had to tell it yet again, but she was still in the grip of the hallucinogens as we sat there. As we talked, or more accurately as she talked, her reality was an interweaving of what and who she was seeing and what was being generated from her imagination.
‘Look, look at the birds flying out from the top of the curtains. There are huge black spiders coming from behind your legs, Jan. Denny, what is that horrible.... thing.... I can see on your nose?’ she looked up at me with strong disapproval, as if I had brought upon myself this deformity or whatever it was that she was seeing.
Thursday, March 17, 2011
|Denis Wright 17 March 2011|
With some trepidation, I submit the following. The photo was snapped this morning. In spite of the ravages of chemotherapy, radiotherapy, the bloating effects of steroids, side effects of Avastin, and plain old time, there can be life after fifteen months of ferocious attacks on the human body.
A posting intended to lift the spirits of those dealing with cancer, either theirs or family members or friends.
A posting intended to lift the spirits of those dealing with cancer, either theirs or family members or friends.
Wednesday, March 16, 2011
‘Annabel Crabb is one of the most versatile and respected observers of politics in Australia. She is ABC Online's chief political writer.’ This is the ABC’s bio for her, and they’re right. She’s very good indeed at what she does, not that she needs my endorsement and wouldn't know me from a bar of soap. But today she made the comment:
Is anyone else getting the fear just turning on the radio these days? I am, big time.
Sympathetically, I sent her a condolence message together with a link I thought might divert her from distressing things, to which she responded:
Some very cool detail here about male bowerbirds, thanks to @deniswright who thought (correctly) I might like: http://tinyurl.com/33qqvlw
So I thought I might then look at these headlines as reported by the ABC today just to see how scary they were. How right she was. Here they are, with my own take on some of them. Don't blame the ABC for my commentary.
I really believe that shark attacks are on the increase because something is missing in the normal food chain for them – maybe over-fishing of their usual prey. Then again, more and more surfers in wetsuits stay out longer and in deeper water and I can’t blame sharks for confusing them with wounded seal-type critters.
How hard is this one to have an informed opinion on? I have switched positions on it twice now and have come to the conclusion that I just don’t know. I just wish there was no need to have to make a decision at all, but I hate the thought of that madman bombing his own cities with thousands of innocent victims in them.
Crisis-no-crisis-crisis-no-crisis-crisis – that’s got to be a crisis regardless of whether there’s a crisis or not!
Painful, painful story. Don’t look.
No comment if this is sub judice as the last thing I would want is anyone deserving justice to be denied it because of some charge of perceived prejudicial comment. Just draw your own conclusions.
Poor buggers – outsiders will probably benefit hugely by snapping up bargains. But it may all end in tears.
Here we go again.... and it’s an innocent driver going the other way that was killed.
I guess we’ve all been emotionally stunned by these videos, but nothing could remotely match what those who’ve been through the tragedy and survived are going through. Getting harder and harder to watch.
This is a very very tricky one, make no mistake. Some who haven’t seen these games would be outraged and shocked by what is interactively possible, but banning rarely works and may create as many problems as it solves by making them even more attractive to underage players. Very underage players.
Poor sods. Not only have they suffered massively, but their catastrophe has been sidelined almost totally by the events in Japan. And now they have no choice but to go elsewhere to watch their beloved rugby World Cup matches. I don’t like the way that headline reads though – it looks like they did something disgraceful to lose the opportunity to host the matches instead of having a stadium that is now not safe because of an earthquake!
Can you believe that? The story shows that race is totally irrelevant to the company’s activities, but they still seek it. Are they insane?
No wonder Annabel is feeling depressed.
Oh, last thing – this one’s for you, Christian! She writes:
‘”Nestle Recalls Lean Cuisine Meals ... Red plastic found in meatballs." I'll panic when they find meat in them.’
Ha ha! Something to put a bit of a grin on one’s face at least.... (actually, Christian never has the ones with meatballs anyway!)
(Note - those headlines are live links, for the moment, but no doubt won't be when they become outdated.)
Tuesday, March 15, 2011
The other day, last week it was, I got a surprise email from a former student. His wife, whom he described as ‘an avid iPhone tweaker, twiddler and tweeter’ came across my blog, he said, a couple of days before. I’m using some of his email to grease the wheels of this posting. Don’t worry, I asked his permission.
Steve completed his Graduate Diploma in Islamic Studies in 1997. His knowledge and experience of Islam were well in advance of the majority of his classmates and future employers, which was both a blessing and a curse for him for reasons I won’t go into here, or this will never get off the ground.
He retired six years ago, and I’ll let him tell you what he’s doing now, in his own words:
Now I describe myself as an agroforester. We're in a joint venture with State Forests, growing eucalypts for veneer production. After teaching adolescents, growing trees is just wonderful, viz
- they stay where you plant them, and don't just go away into another paddock
- they don't decide to go and hit other trees for mysterious reasons
- they don't call you '****head'
- when you're sick of them, it's quite OK to get out a chainsaw and chop them into small pieces
I don’t know if Steve would ever have been my student if it weren’t for his father’s desire to get a degree from the UNE. Believe it or not, Peter, Steve's dad, was in my very first class of external students here at UNE in 1976. At that time he always wore denim jacket and jeans. With greying temples in a rather distinguished, post-modernist hippie sort of way, he looked much more the part of the 1970s university teacher of Asian cultures than I did, for I was still in my 20s. He knew a great deal more about life than I, which you’d expect, as he must have been well into his fifties by then, but at least I had the edge in some of the specific things I was teaching about.
Ah, that Class of 1976! My experience of short Residential Schools as an External Student myself at Queensland University was jaundiced, I confess. The other students looked as if they were dragged there, said little and wrote much down. They were there to mine information in the sense of finding out what the lecturer thought and regurgitate it in the exams. So I expected not a great deal from my first ever batch of Externals as their teacher when they came for their first Residential School.
How wrong I was! They were fantastic – eager to learn, eager to discuss, unafraid of going out on a limb. After four days of lectures and tutorials, I felt as if I had been through a physical and intellectual wringer, but smiling all the way. And Peter was leading the charge.
So it was with some sadness that I read in Steve’s email:
I have been retired for six years, having started by taking leave to become my father Peter's carer. He slipped out of camp nearly two years ago, with the sort of dementia I hope to get, a 'golden dementia' in which he was having an absolutely lovely time; everything around him was utter chaos, but, hey, things were great for him.
Apart from telling a story that I believe has sufficient merit on its own for inclusion in my Blob, this is all leading to something. But I must round this part of the story off with this. I wrote back to him:
I am genuinely happy for him that if it must be dementia, he has this form, though recognise the heavy burden this places on you as his carer. ... Of course, the critical thing for him is that you are there to steer him along and hopefully in the end he will slip away gently.
Now, I understood from what Steve wrote that his Peter was still alive, though in his own world, but I was wrong. I’m sure you understood what Steve meant, but my mind was on another track. By ‘out of camp’ he meant that Peter had died, whereas I thought he meant his body was still here but his mind was elsewhere.
My mistake certainly, but, as I wrote to Steve yesterday, I was making the assumption I did for a good reason.
I’ll come back to that in another posting, because it links a lot of things that have been on my mind – life and death, reality, the universe and everything.