You Only Live Once, so the mantra goes. On the surface this may seem to be absolutely true, sort of. Depending on your worldview. But a quick look behind the veil and a completely different reality may come into focus. It all depends on ones perception. Take the following headline as an example:
You only live once vs living for the future: Striking a balance
How Does the Truth of YOLO Impact Your Lifestyle and Mindset? asks the writer, then goes on to say:
I’m not usually very good at thinking of quick retorts (or should I say re-tortes) but I replied: ‘oh yeah I know, in fact I treat myself often, but I do it intentionally with stuff I want rather than opportunistically with stuff that is there.’
I had developed a new mindset unconsciously. In my weight loss I haven’t dieted or ‘punished’ myself. I’ve just become focused on what matters and intentional about my relationship with my body and the stuff I put in it.
Die-alogue Cafe: That’s one approach from a human centred and material perspective.
What if we came at this from a different angle? One of nature, one of living within a community, one of thinking of life as being a continuum – from one generation to another. One of being part of a larger whole of the earth community as a living, breathing organism as contained in the GAIA concept by Norman Myers. Taking this idea further, of being an earthling, as Germaine Greer has described herself in her latter years.
How does this change the somewhat self-centred approach of it’s all about me getting as much as I can out of this one time earthly visit, to being one of a community of beings, of which humans are but one very small part?
Thoughts to ponder, as we prepare for our end-of-lives.
Denial still seems to be the order of the day when it comes getting our end-of-life affairs sorted out..
This story has a good outcome, because the person dying had put in place the necessary documents to assist those who were required to speak on his behalf.
Sophie Kesteven writes for The Pineapple Project, (ABC, Friday, 12 Feb 2021). In this post: Advance care directives and how to plan for the end of your life, Kesteven relates the story of Jacinta, a 24 year old relative tasked with making decisions about her uncles medical treatment in the absence of anyone else on hand at the time. Here’s a short extract about making a life-or-death decision:
Blood tests showed that Jacinta’s great uncle had a urinary tract infection, which turned into a kidney infection, and, eventually, his organs started shutting down.
Even if treatment was successful, his quality of life would have been impaired.
“The doctor said ‘You need to make this decision within the next half an hour, because if we don’t start treatment within the next half an hour, it’s not going to have any effect’,” Jacinta recalled.
“First of all, I wanted to just walk away and just be like, ‘No, someone else do this.’ And then I was like, ‘No. I need to do this.'”
Poor phone reception made her parents unreachable, so she was left to make a massive decision on her own, and fast.
Although it was incredibly difficult, she referred to her great uncle’s Advance Health Care Directive — a legal document outlining an individual’s medical wishes if they cannot communicate on their own behalf.
“I came to the decision with two minutes to spare that they shouldn’t commence treatment,” she said.
This story refers to the work of intensive care specialist, Dr Peter Saul, who notes that less than 15% of the population has Advance Health Care Directive documents in place.
And later ..
Even though her relative had an Advance Health Directive in place, Jacinta said she still felt like she was in a grey area because there was a chance he could recover.
Ultimately, though it only formed part of a much more difficult process.
“The Advance Health Directive was really useful for me in that I knew where he stood on kind of black and white health issues,” she said.
“I did use that to end up guiding my decision that most likely if the treatment did work, only worked partially, or kind of didn’t work very well that he would end up with the quality of life that he wouldn’t have been happy with. And that’s ultimately how I ended up coming to that decision.”
When pain and suffering become intolerable, the right to intervene to permit a more dignified and peaceful ending would seem like a no brainer.
But despite most people agreeing with such thinking, our elected parliamentarians for the most part have thought otherwise – at least up until now.
A new bill is soon to go before the NSW parliament that will hopefully be a circuit breaker in the dying with dignity space that has dragged on over many years.
Letters to editors can help bring these matters to the fore, which is the case here:
It’s about dignity and a decision (Letter to the editor, Newcastle Herald, 31 December 2020)
Gladys Berejiklian must allow a conscience vote when Alex Greenwich puts his bill before parliament (Most NSW voters back euthanasia law: poll’. Herald 27/12). It has become clear that a large majority of NSW voters would like the opportunity to die with dignity.
I, like thousands of other people have had to witness a loved one die a lingering, painful and pitiful death. We the (estimated 85 per cent) need to let our members of parliament know that we want voluntary assisted dying in NSW as they have in Victoria, and Western Australia. It is also probably soon to be introduced into Tasmania, South Australia and Queensland.
Signing the petition which is currently being promoted by the Dying with Dignity (DWD) organization, and which will be available to shopping centres throughout the coming months, will help to convince our MP’s that we want dying in a dignified manner to be our right.
This last 12 months the narratives that have stood us in good stead for many a long year, have been challenged in many ways – fake news being the most virulent example.
This article by Adam Szymanski: How to Build Narrative Power and Co-Create a Just Future is prefaced on the notion that imagination is a powerful tool to free ourselves from repressive cultural narratives and social power structures.
Imagining is one of those things that children do as part of play everyday, but adults tend to limit their imagination for fear of stepping outside the norms.
In an era of outsourcing just about everything, imagination has become a product to be bought in the market place.
We need to build our imagination muscles if we are going to overcome the dominant powers of big – and sometimes not so big – private corporations who make it their business to be the ones who have all the good ideas – all we have to do is align ourselves with their ways of doing things and all will be well. No rocking the boat, no sense of being a rebel or dissenter, no questioning of the status quo. It’s much easier to conform and play their game. The trouble with this model is it leaves us being passive recipients and vulnerable to exploitation.
So whether it’s issues to do with climate (which is what Szymanski is on about) the same principles also apply to over medicalisation of end of life issues or the over indulgent commercialisation of funerals. We would do well to work up our own narrative/s – ones that serve our family and community interests. Otherwise by default we serve theirs – the privileged few. We need to disrupt the dominant narratives with ones that are more inclusive, more compassionate, more earth centred, more attuned to the circumstances at our times of need. He says:
….. construct a narrative composed of a message, a story, a narrative, and a deep narrative. While messages are ephemeral, humans connect and remember stories and narrative thanks to the basic elements of story-building. Stories make sense through the context of a narrative which ultimately proposes responsibility and action, bringing our audience into a shared vision sustaining a deeper narrative to change underlying assumptions.
The start of a new year is the perfect time to put pen to paper and write our narrative within the context of our end-of-life wishes, our funeral preferences. And let’s go the next step by adding some substance to the documents we produce – provide some guidance notes for our next of kin that includes quotes and contact lists. Build the narrative and then relate the contents to those to whom it is addressed.
All the evidence tells us that only good can come from this approach.
Happy and celebratory times for many may be counter balanced with less than happy and perhaps mournful times for others.
Dying and death doesn’t pay much attention to human invented events such as Christmas so it’s little wonder that there will be people coming to the end of their lives, which means family and friends will by association, be having to face the realities of the ending of days.
Managing Grief at Christmas is the title of story from Dying Matters in the UK who note that:
Christmas can be a stressful period even at the best of times but coping with a loss at this time of year can really test the strongest of people. The festive season can be one of the most difficult times of the year for those grieving.
The Compassionate Friends (TCF) is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members who have suffered the death of a child or children of any age and from any cause.
TCF suggests that Christmas cannot be the same as it was because our family is not the same – not complete – and offer advice on their website about grief and bereavement of a child. They also have more information specifically on coping at Christmas and a leaflet available to download.
There’s no rule that says a coffin must be made of wood, that it must be polished and lined with plush fabric. That it has to have fancy gold handles and an engraved gold plaque. The funeral industry tries to push that line, but only because there can be a big mark up on these items and people feel obliged to have an expensive send off for their loved family member.
And so it’s good to know that the Ulverstone Coffin Club in Tasmania is again taking the initiative by offering cardboard coffins in a flat pack style to by-pass the big end of town and keep prices down for families, regardless of their financial circumstances.
Renowned Australian author and historian Richard Flanagan has published a new book titled: The Living Sea of Waking Dreams.
He joined Richard Fidler on ABC radio and what follows is a selection of extracts from this Conversations interview.
(The) Title comes from a poem by John Clare known as the peasant poet, who noted that ‘there were unenclosed areas of Britain, that is, there was still land that was held in common, and in his life time, they were enclosed which meant they were fenced off and became private property, and what had formerly been communal activities, became the crimes of trespass, theft and poaching. And these common lands – the people had a relationship with them, not dissimilar to the relationship indigenous people had here with their country. It was deeply felt, it was spiritual, it was clearly seen to be one. And (even today) Clare’s poems are very much about this world.’
‘ …. Under this new system, the land was destroyed and something within him (Clare) broke and he went mad. His poetry about the land, the birds, the trees, love, friends – I think it speaks very powerfully to us today, when we are seeing something similar happen once more.’
‘We are seeing much of what of our lives that hadn’t been the property of profit and loss, becoming monetised — our emotions, our feelings, our moods have become part of the profit and loss ledgers of the great internet companies — we know your nightmares and we will use them. They are being used against us and they are being used to make money.’
When we see everything in purely material terms, we end up living in a system where everything is measured materially, and unless you could be measured materially, unless what you did had an economic function, then society placed no value on you or the things that you actually value, and so we’ve come to a crisis that is existential where the very world is being destroyed, simply because it makes money for a few people. And even though people are both terrified and heart sick about this, they can’t oppose it unless they can see a new politic which speaks to larger values than the purely economic and the purely material.
Scientist Pete Davies took Richard Flanagan into the South-West of Tasmania where he wanted to show Richard that the area was dying
So much around me, so many beautiful things that I loved were all vanishing – plants, animals, birds – they were all vanishing. All these things I loved, I realized my grandchildren would never see. And I had this scream building within me that I had to respond to.
The fires of last summer have told us that we have gone to some new place.
Later the story of a fellow dying …
‘There was a rich patriarch of a very wealthy family. He was dying and had been brought into hospital. He was ready to die and the medical wisdom was that there was nothing more that could be done for him, but rather than palliate him, it offended his children somehow that he would die, and so instead of letting him die, they used all their power and influence to negate the medical advice. And to not so much allow him to live, but to condemn him to a living death, where he didn’t really live but he couldn’t die. It seemed to be a situation that speaks to us of our age. Why would people be offended by the idea of their parents dying? Why would you inflict such suffering in the name of a perverted love? It seemed to me that we no longer know how to die, because we no longer know how to live. We can no longer accept what is around us, with a sense of grateful wonder. We are no longer able to see the beauty that is everywhere, in our friends, in the small things of life. We’ve lost the capacity to see life in its vivid array. And also the passage of time, that’s also a part of life.
And later …
In a time as absurd and as unrealistic as what we are now living through, the worst way you could seek to describe it is realistically. You need a story grounded in the absurd to do justice to the times. Perhaps it’s the job of the novel to allow readers to view their world a slant, to tear the cataracts away from their eyes so they see, they pay attention properly to their world, to see that what they thought it was, it wasn’t. And really when you look around, so much is vanishing, and we pay it no heed. Not just some of us, all us pay it no heed. We return to the minutia of our lives and pretend that there’s not this extraordinary crash in animal population, in bird populations, in insect populations. If we stop to think about, most of us are aware that things are not as they were 10 or 20 years ago, that something dreadfully is changing, but we pretend that life will go on, but life won’t go on. That’s the terrible dilemma we face unless we act.
We describe things in ways that are not true and yet despite what is staring us in the face, we choose to see otherwise.
When we pay attention to things, we find that nothing is as we thought it was, because we just use convenient shorthand. But sometimes it matters to see things as they are. It matters to see what is disappearing. Because if we don’t we to will be condemned to the vanishing. Even the eminent figure Dr Thouchi, the much maligned doctor, said that coronavirus is just a consequence of the environmental crisis and that there will be more of these pandemics if we keep on despoiling the environment. So these things are not separate of us. We have to see the world as it is, and us as a part of it and not separate from it.
And later .. ‘scared of beauty’ …
‘… there’s so much that’s so beautiful, but there’s always this desire to destroy it. I feel it’s not just economic, I feel there’s something about beauty that is a truth, and in that truth is hope, because you can’t deny something that has an existence which exists beyond the purely material, which does something to help your soul, to help you live in a way that uplifts you. And beauty is a deeply unfashionable idea, and yet when we see it, and when we are within it, it moves us deeply. And I wonder why the most beautiful places and things are often the first to be destroyed. And I think it is because it shames the way we live. Because if we honoured beauty we would have to live differently. We’d have to live better. We’d have to pay attention a lot more, and so I think honouring beauty is very important.
And later … ‘City in the flank of mountain’
Gross state product can up but people can be poorer. They seem more miserable. And the pleasures and joys of the past are vanishing.
… some can’t stand the unique, the different. They want to render everything ubiquitous and mediocre. But ordinary people place a value beyond dollars and cents on places that they just want to sell off.
And later …
Everything is absurd until it happens. Once something has happened it is taken for granted as inevitable. We only see it as inevitable that the English came here and invaded and 200 years later we have this English influenced society that displaced the Aboriginals. Nothing is inevitable. Later we invent mythologies that claim that it was always going to be and there could be no other way.
In attempts to demystify the end-of-life conversations we have, the number of studies and publications covering the many aspects involved is starting to reach saturation point. How many ways can you say the same thing?
Here is another one for our consideration. Published by Cemeteries and Crematoria NSW it contains some statistics around current practices and reveals trends that we might not have known about.
It’s normal to die. Death is all around us. It’s the way nature does life. The death of one is life giving for another. Take a rainforest or the ocean. These two great systems thrive on the cycling of nutrients and that means the living and dying of plants and animals. Unseen and for the most part unreported, but taking place everyday outside the gaze of the vast majority of human society.
As Rebecca Giggs points out in her book Fathoms: the world in the whale, we are fauna, we are embedded in nature – not separate, not apart – quite the opposite, in the midst of, a part of. The sooner we understand this the better we will be able to get the stories that we tell ourselves grounded in the realities of life, which can be very different to the myths peddled by the death denialists. There is no great out there where we go. If we choose cremation then we go back into the atmosphere as vapour, and if we choose burial we go back into the earth. One way or another we end up within this finite planets influence, within the larger universe.
It’s no surprise that when it comes to dealing with death, children get it – often much better than adults. Back in the good old days, the adults of those times got it too. Sadly over the years – mainly since the early to mid 1900s – many adults have adopted the ‘we’re going to live forever’ mantra, which has been compounded by the medicalisation of end-of-life care with drugs and technology to prolong life. This has left many people thinking that with sufficient intervention, there’s a fix for everything including getting old. A consequence of this putting off, has been not being prepared, for what should be expected.
The ABC has been covering the subject of dying and death across its various platforms, one of the latest being ABC Life, where Siobhan Hegarty has posted this story: How Play School’s Little Ted is helping parents and kids talk about death and grief, ,
Key takeaways from Play School’s producers and early education experts:
Keep your language clear, don’t use euphemisms like “they passed away”
Talk about death before it happens in your family
Let your children lead the conversations, ask them what they think has happened, rather than bombarding them with information
Show your children it’s OK to be sad
Kids can’t sit with “big feelings” for too long, so plan a fun activity for after your talk
Keep memories alive — make a scrapbook about someone who died, visit their favourite place or cook a recipe they loved.
If ever there was a reason for adults coming to terms with end-of-life subjects it’s being able to be grown up about it for the children in our lives. This doesn’t just apply to parents, it also applies to grandparents, our wider circle of family and friends and beyond this the community. For many of us, death literacy is not on our list of things to get our heads around. We pay attention to television dramas, movies and sports and cars and pets, and … but death doesn’t rate, even though it’s in the nightly news with stories of murders and wars. It’s all out of proportion, but it needn’t be. We have it in our power to turn this around.
Let’s assume we can sit comfortably with talking openly and honestly about dying and death. The next step might be to have at hand some good references that we can share. One of these might be: Beginnings and Endings. This explores the concepts of birth and death for preschool-aged children. It is available now on ABC iview, to give parents and carers an opportunity to watch the episode with their children.Watch it here.