Modest Expectations – The Spine

In an advertisement for the MD Anderson Cancer Center in a 2009 issue of Harper’s, a healthy triathlete smiles. His name is Bill Crews and under his name is the word “lymphoma” with a red line through the word. It is five years since he had been diagnosed and now following “an individual treatment plan”, he was in remission attested to which was completion of 14 triathlons at that point.

To celebrate his achievement a Bill Crews Remission Run was organised annually to provide funding for this Houston- based Cancer Center. Then there is a brief note in 2014 to say the website advertising the run is “inactive”. There is no record of Bill Crews dying – just that one word “inactive”.

It got me thinking, since my closest male friend also succumbed to lymphoma some years ago, although his course between diagnosis and death was far shorter. Once you get cancer, except for some skin cancers, you know your life will be limited. We all will die, but there is no need to face it until the doctor across the desk signals your mortality. You can of course avoid this confrontation by suiciding, being murdered, killed in an accident or sacrificed deliberately by those who would wage war.

What if I responded to the doctor after the sentencing: “I want you to tell me the exact day I am going to die.” What would be the response?

“Unfair question. Impossible to know.”

“OK, then will it be next week, week after… and this year, next year, sometime, never?”

We can be very precise with the input when we are provided with an individual treatment plan. Therefore, if you can give me such a plan, then it is reasonable to know the outcome, or what to expect. After all, infallibility is a power that some health professionals like to assume – well doctor, how long will I live? But then nobody writes on a funeral notice – he lasted x time longer than the doctors predicted or that the doctor got it so horribly wrong, he died well before the predicted date – perhaps in the middle of some surgical procedure, where the euphemism for “surgical vanity” is “heroic”.

The problem is that what I have written above is so foreign to how society is ordered. Most of us try and live in a predictable world. We expect that if we go to the gym in the morning it will be open at a certain hour. We know that lunch follows breakfast and we have a mid-morning coffee break.

Bill Crews probably had such a regimen. Cancer came; cancer went; but it never does. It marks time. How much of that time was consumed by unpleasant morbidity; how much did life become unbearable; and in the end, how much did he wish to live – all unanswerable now.

In fact, we live in a world of uncertainty. The flow of information from so many portals means that life is like traversing an Arabian souk. We never know what will happen next, but we always have the option of wanting or not wanting to know what we have bought – without it being varnished with fakery.

What does that all mean? Government, despite the various inputs, has to make the most cost effective allocation of resources in the face of all the individual treatment plans. There is no incentive for those manufacturing, distributing and prescribing the various medications to be less than optimistic. The cost of development of a drug is always stated as being so expensive so that the end product mirrors this expenditure. However, in the World of Optimism, who is going to undertake the rationing on behalf of community affordability. The plea, the crowd funding, the picture of the cancer sufferer, the hoped for remission mistaken for cure are all part of the emotional appeal. However, what price does one pay for a small addition to life of variable quality – what is an average of six months worth?

Policy should not be predicated on the outliers. Bill Crews had non-Hodgkins lymphoma. Through all the obfuscation surrounding survival rates, maybe his ten-year survival rate was about average when the last mention of Bill Crews was made.

Therefore, assessing the cost of Bill Crews’ treatment may be a useful indication of the individual cost for the condition. That statistic is just as important as knowing the relative success of the individual management plan and generalising from that one example.

But my whole case is predicated on two assumptions: the first is that the lack of mention of the poster boy by MC Anderson Cancer Center (now also with a red slash through the word “Cancer”) public relations, and the inactivity of the Remission Run from 2013 onwards means that Bill Crews is now cycling on a higher plane. In line with MD Anderson Center publications, I have not mentioned the word “death”.

The second is what Bill Crews’ individual management plan cost when everything was tallied, its figure would be useful enough to be used as a guide to cost – assuming that those costs could be found and adjusted for current prices.

Hopefully the responses, outraged or not by such reductionism, would be a welter of data trying to disprove my assumption. However, that could lead to a good controversy if the policy makers were listening, and cost could be determined with all the accompanying arguments laid out. Then tell the taxpayers!

The Senile Trail

Listening to the Health Minister, he talks about “self stigma” and that we should reach out for help. Well, may I tell you, if you bother to listen, Minister, self-stigma is a meaningless term, when you are crying spontaneously for no reason, when your body is at a point where you cannot undertake the activities you were once able to do; and you are alone. You reach out for what? The phone lines are always busy in the daytime. Trying reaching out at 3am in the morning wherever you are for help. About all that is left is the late night / early morning radio programs that provide an outlet to the old, the sick, the lonely who can’t sleep and who communicate with fellow callers from across the state or the country, through the radio: “How is Beryl from Cooma, we haven’t heard her on the show for quite a while, does anyone know?”

There is a great deal of breast-beating going on, because despite all the expense spent on input, nobody has a solution to care of the aged. I have been associated with nursing homes that work well, because there is a continuity in management and the constant positive is that those in charge worry and care for their nursing home community.

Being dependent implies that I have a carer, which fortunately I have “in spades”. I can no longer live independently unable to have shower, cook, dress and generally manage any housework efficiently – without help. It is frustrating knowing that when you are dependent, you have to wait – you have to learn patience without surrendering yourself to outright submission.

However, being in a wheelchair and then suddenly left facing a blank wall in an airport adds another dimension. The person responsible who leaves you without saying anything just adds that element of being ignored. It is no longer just waiting, you are being ignored and that adds a new reality. It is a sign that you a bit of garbage to be swept when the mood takes the handler. In the end, you lose your self-respect unless dementia beats you to that realisation.

Such are elements of growing old – such are the elements of being in care, where the rules are such that you – the resident – are governed by regulations engineered by government bureaucrats far away from your bedside. They call it compliance or accreditation – a meaningless term to indicate everything is under control. Unless you have a family, whether natural or manufactured, to act as the antidote, then every day is one day nearer to death, and increasingly you wish that day will come. Those words like “accreditation” have a meaning to those who love making paperwork look like an illuminated manuscript.

Are there any solutions beyond having a caring carer not an impersonal person – a shift worker with an inadequate handover when they come on duty, their measly remuneration ultimately dependent on some distant hedge fund?

All solutions are just a variation on that fact of individual care without the negative embellishment.

For instance, I mentioned in a previous blog the series shown on the ABC where four year olds visited an aged care facility over a seven-week period. Then the series finished, with an elaborate farewell antic. I wrote in my blog* at the time:

However, if the attempt of mixing the groups is just voyeuristic – “been there; done that”; then I believe the makers of this series have probably done a disservice to all involved if nothing further eventuates.

Old age is an increasing societal challenge. It should not be just a case of waste management. Yet I fear that is happening – and David Attenborough-like explorations of human foibles and cuteness should not replace serious consideration of what can be done.

The clue is in the series – get the elderly to tell their stories, whether they have a four year old audience or not. After all, it gives you a sense of relevance, even when you may be the only one listening. However even one child listening and responding with questions is a bonus. After all, I believe we are all storytellers.

My argument was not against the idea; my concern was it being generalised – the implication being that infant schools be co-located with nursing homes, so there is ongoing integration of experience – not just a one-off “gooey-eyed” curiosity but as part of a conscious government policy.

After all, each group’s experiences are transitory – the children grow up hopefully socialised to understand what it is to be old; and one of the aged care participants died between filming and release of the documentary. Such is life, as Mr Kelly is reported to have said.

It was ironic when the aged care report was released recently there was no mention of the documentary as one remedy – even seemingly by the ABC.

* Modest Expectations – Duckworth 30/8/19

Mount Augustus

 Uluru has been closed at last. To me, there has never been any question. The traditional owners should have the right to invite strangers to climb this extraordinary monolith. I have walked around the base which is measured at 10.6 kilometres and to me it felt ‘right”. Being a “whitefella” does not exclude you from being in touch with this extraordinary country. One of the things I have learnt from my association with the Aboriginal people is to know when the Land is accepting your presence.

The idea that climbing the Rock is akin to climbing a cathedral may satisfy some people as an excuse. However, the analogy does not hold. Tourists are like ants on the roofs and spires of famous cathedrals and churches; and prohibition to climb churches is more related to safety or privacy rather than it being a spiritual taboo.

The bogan chant of why can’t I go anywhere because this is Australia and I am Australian is OK if you are a self-absorbed narcissist who does not believe that any restrictions apply to yourself. There is a high-falutin’ word for this – “libertarian” and a more macho term – “individual”, its anthem: “I am what I am”.

Well, Mount Augustus may be just what you are looking for, to express your feeling and being what you are. Mount Augustus is technically a monocline but then for you guys, it is a “humongous Rock”. It is not red and bald like Uluru – it is covered by bush and it is still called by the “whitefella” name rather than its Wadjari name of Burringurrah.

Burringurrah / Mount Augustus

However, it is the largest rock in the world and I went there 20 years ago; so it exists and has not shifted. It is a bit inconvenient being 500 kilometres inland from Carnarvon. Uluru is tiny compared to Burringurrah. There is an eponymous Aboriginal settlement close to the monocline.

Rather than walking around the base, we were carted around the 43 kilometres in a minivan at a hair-raising speed by a male nurse then living in the outstation. The trip ended back near the settlement, when the van hit a large pothole and lost its wheel. Fortunately the sand provided a cushion and we were all uninjured and trudged back to the settlement. It just emphasised how huge this Rock is.

Currently, the local Wadjari people allow visitors to climb Burringurrah but unlike Uluru, there is scrub and a trail, which takes around five hours to climb and return.

Watch this space! I remember when Uluru was Ayers Rock and was hard to get there.

Burringurrah speedway

Sydney Ferries Fiasco – A form of naval gazing

Guest Blogger: Neil Baird#

It could be said that the only thing keeping the New South Wales Liberal/National Coalition state government in power is the even greater incompetence of the State Opposition. If the latest controversy over the renewal of the Sydney Ferries fleet is any indication, the Gladys Berejiklian led coalition is certainly not an exponent of open government. The Opposition has only now awakened to an announcement that was made nine months ago in February.

Unusually, the announcement about Sydney’s ferry renewal was made from Liberal Party headquarters and not from the Minister for Transport’s office. Sure, the party was in election mode but what were they doing issuing a press release announcing a $1.3 billion project in such an underhand way? What was the government trying to conceal? Why will just 13 comparatively simple and small ferries cost $ 1.3 billion? That figure appears grossly excessive. Or does that include running and maintenance costs for nine years as mentioned in one report? Why would the government not be more transparent?

Given their other shenanigans with the Northern Beaches and Mona Vale hospital projects, for example, taxpayers have every right to be suspicious. For the record, the three larger ferries are to be built in Indonesia, presumably by Penguin Marine; the 10 smaller ones are being built by Jianglong in Zhuhai, China. The local firms mentioned below Ross Roberts/Harwood Marine were never invited to tender. Nor was anyone else apparently.

It has since been fully revealed, in an 23 October 2019 press release from Opposition Leader, Jodi McKay, that the fleet replacement was a “done deal” by 27 February 2019 when the Liberal Party announcement was made.

The story goes that in early February this year a couple of Australia’s leading ferry builders had been approached with a vague invitation to tender for the ferries. Apparently they didn’t respond to the approach. So did at least one leading firm of naval architects. None could be bothered to respond as they had such bad previous experience in dealing with Sydney Ferries, apart from being very busy anyway.

The subject went quiet for a few months and has only now been revived by Ms McKay who seems to have confused the facts.

Simply put, after endless problems, mainly with the maritime union, the operations, but not the ownership, of Sydney Ferries has not officially been privatised. It is a public-private arrangement, which avoids the need to go out to tender. The French-owned transport conglomerate, Transdev have contracted to operate the ferries, and seem to have eliminated most of the problems when it was run by the NSW Government.

Yet the curious way the ferries were ordered remains, with virtual concealment of the nature and cost of project from the taxpayers of NSW.

While Ms McKay has revealed some of facts, other parts of the story are off-beam. While the Trade Unions have been one of the major reasons for the problems at Sydney Ferries, the relative absence of shipbuilders in NSW has not helped.

However, she is partly correct. The ferries could have been built locally, as she advocates, but the only company in the NSW with experience in building ferries of the size ordered is Harwood Marine of Yamba in Northern NSW.

Strangely, Harwood was not even approached or invited to tender. Indeed, the managing director of Harwood was unaware of the government’s intentions until very recently. Harwood has been busy with a major expansion of its company’s facilities including, ironically, a 60 metre shed in which large aluminium ferries could be built. Equally ironically, those who could have benefitted – the local youth workforce in a town where unemployment stands at 23 per cent – didn’t get a look in.

Apart from Transdev, which is expected to correct Sydney Ferries’ inadequacies, one major local firm will benefit from the association with Transdev. That is the Port Macquarie-based company, Birdon, which moreover has been contracted to build ferries in China and Indonesia for Transdev.

Birdon is a highly reputable company, as is Transdev. This fiasco is no reflection on either. The government may well get a good deal in the end. However, the problem is the opaque process that the government followed. The State Opposition has been unaware of such a major project, until the belated statement from Ms McKay. It is also a major problem that Harwood, a significant employer and highly reputable local shipbuilder was not even asked to express interest in the project.

The taxpayers of New South Wales have not been well served by its politicians.

We have not heard the end of this.

# Neil Baird is non-executive Chairman of Baird Maritime, a global maritime trade publisher. Among his other positions, Neil is a long-serving director of the Australian Shipbuilders Association.

Mouse Whisper

Once I heard the confession of a poker-faced mouse whisperer despite it being difficult to squeeze into a murine confessional box.

In January 2004, I was in grade 12 of high school and about to graduate. I operated a profitable web design business as a part time job for some spending money. Seeing as my legal name is Mike Rowe, I created the domain MikeRoweSoft.com for my portfolio. The Canadian lawyers of Microsoft didn’t like this (I really don’t know how they found my site, I had 2 visitors a day. One was me (sic), one was my mom). They sent me a couple of emails and a large legal document telling me to give up my domain name. I asked for $10k. They said no. I went to the media. Hilarity ensued.

Since then I’ve been a full time professional poker player for the last 3 years. I’ve made enough to buy a condo and live very comfortably in that time. I have finished 5th in the PokerStars Sunday Million for $97,500 as well as 31st at the PokerStars Caribbean Adventure earlier this year for $40,000. So I guess you can ask about the poker stuff as well if anyone wants to.

And no, I didn’t sell out for an XBox.”

The site was still active in 2017, but not now.

Modest expectations – Mali

In my heyday

Young men wrote to me

Everybody seemed to have time to devote to me

Everyone I saw all swore they knew me

Once upon a song

Main attraction, couldn’t buy a seat

The celebrity, celebrities were dying to meet

I’ve had every accolade bestowed on me

And so you see

If I never sing another song

It wouldn’t bother me

I had my share of fame

You know my name

This was the last recorded song of Matt Monro when he was dying of cancer. Matt who? Frank Sinatra recognised him as his equal in voice and ability to connect with his audience. However, there is a plaintive quality – you know my name. Really, you, Mr Monro have been a long time dead – and there is limited space in a nation’s collective memory for anyone, even if a superb crooner such as yourself.

The problem is that you may know my name but the passage of time will dull and obliterate it.

That is unless you make sure that there is a memorial, where its message is relevant to an ongoing generation, and not just to remember “my name”.

For me, the muffled sound and grainy sight of Salvatore Allende crying out “Larga vida a Chile”, and the fact that his cousin, Isabel has been such a prominent author, has meant the name has stuck around, as a romantic standard bearer for the oppressed – something South America has in droves.

Museum of Memories and Human Rights, Chile

I have recently returned from Santiago where I made a point of visiting the Museum of Memories and Human Rights. This was the brainchild of President Michelle Bachelet, to ensure that one memory sticks in the mind of the Chilean people. On a wall on the first floor are myriad photographs of Chileans murdered by the Pinochet regime – 130,000, probably more.

People who are just an anonymous as Mr Monro may be now, but they exist, not by names but as a powerful dark photographic reminder of the cruelty of Chilean to Chilean; in other words, you may be nameless, but collectively you are not forgotten and that is due to the overarching forgiveness led by this remarkable woman. After all, her father was killed by Pinochet’s thugs and she and her mother tortured.

Perhaps this memorial will serve the people of Chile and remind them to never abandon democracy again. Never, never. Ask Chileans of the age what they were doing on the 11 September 1973, when the military forces were unleashed on the democratic institution and they know, as well as those of my age know what they were doing when we heard John Kennedy was assassinated.

On the surface, Chile is now a stable country with a reasonable economy, the most robust in South America. Some may say its economy is built on copper, but Chile is increasingly diversified. Santiago could even be a Spanish speaking Australia city if it was not for the appalling slums that litter its outskirts.

But what of the forces behind the public face of the Chilean coup and the lugubrious Augusto Pinochet on 11 September 1973, during which the legitimate President, Salvatore Allende, was probably assassinated? That ghastly horn-rimmed Kissinger and his President Nixon, who also gave us the Killing Fields of Cambodia; only worth remembering for the cold-blooded approach to their fellow humans.

Unlike Michelle Bachelet who has gone some way towards rectifying one of the injustices they perpetrated.

Pain 

Opium poppies, northern Tasmania

One of the most unexpected sights is driving around northern Tasmania in early summer is seeing field after field of opium poppies with their delicate pale mauve flowers giving such an innocent touch to the sinister drug industry which is dependent on its supply from this one of few legal areas for opium cultivation.

I am not one to unnecessarily applaud anyone, but I do applaud the Chief Medical Officer, Brendan Murphy, for sending out 5,000 letters to doctors who have a profile of high prescription of opioids. That letter elicited the usual aggrieved response, particularly as it was sent to so many doctors. The problem with many doctors, even in a climate of increasing peer review, is this natural reaction to being questioned on “infallibility”.

Even if the letters implicate those who have a legitimate excuse, it should flush out those who are just drug dealers with a medical degree. Let us get one matter straight, this letter relates to chronic usage – not acute usage. There are times when complaints have been made of the under usage of such drugs where the need is acute.

I well remember the country doctor who was well known to government for over-servicing which, among other misdemeanours, involved handing out opioid prescriptions. When this particular doctor died, his funeral procession through the town streets was lined by grateful dependent patients. It was an ironic way to end one’s days, with a town, which had become addicted to this one doctor.

I hope that the Murphy initiative ends with a marked decline in the chronic prescription of opioids – it is a strange state of affairs that doctors are reportedly suddenly afraid to prescribe opioids because of the letter rather than fearlessly continue to exert their clinical judgement as to whether opioid use in a patient are justified.

For my part I have an auto-immune disease in which pain has figured so prominently that I was taking the maximum dose of paracetamol each day and counting the hours until my next dose. However, I eschewed opioids because of the fact that I feared addiction, given how long I would gave to take them. Just hankering for my next paracetamol tablets was warning enough. I survived the time without resorting to opioid, and fortunately my need for analgesia has abated.

It was interesting to note that the recommended maximum dose of paracetamol in the USA is lower than in Australia. I wonder whether this had any effect on its use and the substitution to opioids.

The other problem is exemplified by the woman who claims to have been prescribed opioids for 25 years for pain and now her prescription base has dried up. I make no judgement on any individual case but it is not difficult to hypothesise that there is a cohort of people who have become addicted because of doctors, who act as drug dealers rather than as medical practitioners.

I do hope that Dr Murphy’s action will lead to this cohort of medical practitioners being exposed and appropriate action taken. The medical profession will be well rid of them.

In the USA, as usual with the vigilante approach long after the wrong has happened, they are lynching the drug companies without solving the problem. The drug addicts are there; the overdoses are there. Making the drug companies pay does not solve the problem. However, when combined with an initiative such as being prosecuted by Murphy, it just may work. Keep it up, Doctor so that its success will be celebrated as part of Murphy’s lore.

Where do we go from here?

The ABC has produced a four part series Old People’s Home for 4 Year Olds; it is modeled in some degree on a BBC series of the same name.

Lucy Mangan wrote in the Guardian about the BBC version (sic):  The show continues to tread the fine line between heart and sentimentality, between reporting on measures involving vulnerable groups without patronising them … and that at the very least the sociological gubbins should be let fade into the background instead of the makers trying to paint a scientific gloss on the commonsense appreciation that anyone’s mood, mobility and memory will improve if you throw activities, new experiences, a few highly supervised hours with some charming infants and the money to pay for it all at them.

I am somewhat uneasy at the sight of four year olds being led into an old people’s home to play with the residents. To me, the children could just as well be going to the zoo. These are strange creatures to the very young; and the carefully depicted interaction predictably elicited parental clucks by the commentariat at the wonder of it all. Annabel Crabbe is the ideal presenter.

However, where is it all leading after the cameras are turned off and the academics drift away to write their papers? The numbers participating are few and given that the camera cannot be a continuous record but one determined by the selectivity of the director, then the temptation is to have the cutest cuts and leave out the scenes that do not correspond to the producer’s definition of bliss.

There have been other experiments, such as the Seattle one where a preschool was placed in an old people’s home. It has been locally successful if one can believe the reports. However, it is just one example; but what does a policy maker do with such a project to make it generalisable? The other factor is the enthusiasm of those who initiated the transfer of concept to action. They have a vested interest in making it work, but times change, enthusiasm wanes. These sort of projects need a wider support base not only to be sustainable but more importantly generalisable.

The actual conduct of the operation probably requires a high level of supervision, because one is dealing with the interaction of two groups where there is both dependence and yet a high level of unpredictability. One group will soon move to another age group and perhaps will be left with a positive view, while the other group are about to die and leave their trace on a filmed archive only.

I remember when I was a small boy and following my father as he went around a ward full of war veterans. At one bed while my father saw other patients I got talking to a patient – a soldier. He was friendly and he talked so that I understood what his life had been, without any sense of self-pity. I remember saying I would see him next week. He smiled, called me “Blue” and patted my arm.

Later, (I cannot remember the time gap) I came back with my father and went straight to his bed. I don’t remember whether it was empty or if there was another person in the bed. However when I asked about “my friend”, the reply came back that he had died. I could not believe it. I think it was my first experience of loss. Whether this was experienced by any of the children in this “experiment”, coming back to see one of the old people only to find they have died. For me the memory has stayed tucked away for years.

Why do you tell stories as you get older? Nostalgia is the province of the elderly and the benefit of this type of interaction is that the elderly have an audience – admittedly a very fleeting, easily distracted audience to which to tell your tale. Perhaps in the end the ability of old people to tell a tale where the audience still has the flush of wonderment is a good thing. But loneliness is a 24-hour experience.

However, if the attempt of mixing the groups is just voyeuristic – “been there; done that”; then I believe the makers of this series have probably done a disservice to all involved if nothing further eventuates.

Old age is an increasing societal challenge. It should not be just a case of waste management. Yet I fear that is happening – and David Attenborough-like explorations of human foibles and cuteness should not replace serious consideration of what can be done.

The clue is in the series – get the elderly to tell their stories, whether they have a four year old audience or not. After all, it gives you a sense of relevance, even when you may be the only one listening. However even one child listening and responding with questions is a bonus. After all, I believe we are all storytellers.

Mouse whisper

I don’t know what I will be able to squeal and the Press to write once they silence Trump, but this quote from the New York Times has a degree of murine richness. And I thus thank Mr Krugman for the quote.

At that point you might expect an intervention from the grown ups in the room – but there aren’t any. In any other administration the Treasury Secretary Steven Mnuchin, a.k.a. the Lego Batman guy, would be considered a ridiculous figure; these days, however, he’s as close as we get to a voice of economic rationality. But whenever he tries to talk sense, as he apparently did over the issue of currency manipulation by the Chinese, he gets overruled.

Protectionism is bad; erratic protectionism, imposed by an unstable leader with an insecure ego, is worse. But that’s what we’ll have as long as Trump remains in office.

Modest Expectations Too

Ron Lord

Ron Lord died at the weekend. Ron was a journalist who grew up in the days of “concrete-foot-in-the door journalism”. This was the accepted muscular journalism of the Norton and Packer era in the late 50s. I met Ron when he was the resident journalist at the Australian Medical Association. He was never the high flyer that some of his fellow journalists who moved in the upper echelons of political influence were, but he was one of the first to recognise that there was a niche in health journalism beyond the learned medical journals.

He may not have been the first but publishing and editing Healthcover, a journal devoted to health policy in the 1990s was a bellwether for journalists who have trod the same pathway since. Ron was an edgy character, loyal to his employers but with a honed critical faculty, a person who knew his limits. He had a rare shorthand ability to rival that of a Hansard reporter, which enabled him to accurately and precisely record what people said rather than just printing the media handouts. Thus his was a refreshing approach to which I was privileged to assist.

His passing is a time for appreciating Ron’s contribution to health journalism and then moving on.

Can I jump puddles alone?

I wrote this first when I was severely disabled with pain, stiffness and weakness – the result of a presumed autoimmune disease. Mr McGuire’s recent ill chosen words reminded me that some able-bodied, articulate people can demonstrate insensitivity and in turn need to be reminded – although he seems to be awash with contrition.

Four years after first writing this reflection, although my health is much better, I am still dependent but with flashes of independence and thus hope.

When you go from independence to dependence in a relatively short period, it is bad enough.

But consider the case of this man, when the change was instantaneous – the result of trauma on a rugby field – and persistent. My condition pales by comparison

This young man was determined to walk at his graduation ceremony. His was a high profile accident and the media were there in spades.

The background to the television news report was that the young man had been severely disabled – the word paraplegic was not mentioned – only his determination to walk to receive his degree and, almost incidentally mentioned in the report, he had a wife. When the picture came on the screen he rose out of his wheelchair and with his wife supporting him as though he were a statue, he tottered a few steps across the stage. No, he had not walked – his carer had borne his weight and even though she was half his size, held onto him while he made the small distance across the stage. Then the news item was over – no attention to the wife’s efforts – no watching him struggle back to the wheelchair or more probably the wheelchair moved into position to avoid the need. He had said he would walk to receive his graduation certificate. It was the gritty devotion of his wife – his carer – that enabled him to do so. Good luck – his family could only wish that he would improve; but what struck me was the essential importance of the carer and how little reference was made to her in the news item.

Likewise, had it not been for me having my wife and others to care for me I would not have been able to continue to work at that stage and full time.

I hate being in a wheelchair. Not that I am in a wheelchair that much, but when I have to move more than 100 metres it becomes very difficult without one. What is wrong with the wheelchair? Nothing. I have been surprised by the comfort the modern wheelchair affords.

However, you become a different human being in a wheelchair. Until you make it clear that being in a wheelchair does not mean that your IQ is automatically halved, you tend to be ignored or treated as a child. I remember sitting in a wheelchair and being confronted by a small boy in a stroller. We were at a similar eye level and he with the ingenuousness of a child stared at me. To which I responded “ Son, see what awaits you.” His parents laughed but I wondered whether they continue to deny the five year old the use of his legs.

The other is that you exist in a forest of legs belonging to the able-bodied. You become acutely aware of that facility to walk, which you considered as an automatic right of homo sapiens. It is compelling to watch the easy facility of movement that you have lost. It brings home the sheer complexity of the evolutionary trail watching the striding young man or woman clasping the iPhone to the ear. There is plenty of time to observe when you are waiting in a wheelchair.

This waiting time is emphasised if you happen to be one of those people who has been both impatient and fidgety. In a wheelchair, impatience is not a wise strategy. Gesturing irritably – especially with a walking stick – is counterproductive!

Likewise, you cannot act on impulse – jump up and do something. Getting to your feet is a considered exercise. In other words, it is the carers who count in such an environment. Their understanding of the level of background support required is crucial.

This was brought home to me when I decided to walk along the Seattle waterfront from the ferry terminal to my hotel. At the time the Seattle waterfront was undergoing massive reconstruction and therefore hailing a cab was difficult and I misjudged both the distance and my capacity. “The little boy” had decided to get out of his stroller. For about 50 metres with two sticks it was bearable. However, as I moved forward the uneven asphalt became jolting potholes; walking down improvised inclines, minor to the able-bodied, become challenging ski runs. I struggled, and my carer kept watch for an hour, hovering and supporting, without saying how stupid I was. This was my “puddle” moment.

The occasional person, invariably a young woman, stopped to ask whether I needed help. For an hour I moved along, away from the dusty, sulphurous fumes and clanging steel of the waterfront, onto quiet civilised pavement. The hotel was in sight, and as you do when you walk with sticks, your eyes are mostly directed towards the terrain. What made this segment better was the line of copper beeches, which I could count as I passed each one. I remember when I ran those inaptly named “fun runs” and I was getting tired, it was the next telegraph pole in the street or on the highway, which was the marker of achievement.

My carer who had been ever present suddenly asked whether she could go and get the wheelchair from the hotel since the footpath was paved and the hotel was not more than two hundred metres away. She had picked the right moment. I agreed and she disappeared as I slogged on with the vain hope that I would get there before she could bring back the wheelchair. The definition of bliss is being propelled in a wheelchair up and through the hotel foyer to the bar for a cold ale.

Caring, as I have found out, and the interaction with the person in care is something you see, but unless you are in the situation, you will never feel the importance of that interaction.

However, caring is not the exclusive preserve of some professional group or a financial benefit enshrouded in impenetrable regulation. It is a basic tenet of our society.

It is up to those disabled but articulate, to continually advocate for a better deal, not only for the disabled, but also for the carers. Neither the carer nor the person being cared for live in parallel. However, the challenge remains of how best to translate that interaction between those who have the interpersonal skills intuitively and those who need to learn the skills to improve the interaction. The internet seems to be full of exhortation as to what is best for the disabled, but there does not seem to be much room for interactive comment.

Yet 272,000 carers are under 25 years. I have grandson who was then 14 and who, without prompting, brought me a chair when I needed to sit down. He knew without any words being exchanged what was wanted, because he was paying attention to his environment rather than a piece of technology.

As against this was a young girl of similar age, head down, concentrating on her texting who pushed past me into the lift. Suddenly there was a scream of anguish as the door closed on her inattentive self. It was fortunate that it was not a railway crossing – or a puddle, which turned into a fathom-deep pond.

The allusion in the title is to the Australian author, Alan Marshall, a useful text for us all. He did learn to negotiate that fathomless puddle. Has government with this recent budget done the same thing?

Mouse Whisper

Heard in the Louis Vuitton emporium in Tibooburra: What is better, a retail politician or a wholesale disaster?