“How unbearable the body of a living being who fights with death, and now seems to win, now to lose. I don’t know how long we remained like that”. The Days of Abandonment, Pp 145. Elena Ferrante explores in this story what happens to us when our lives results in an unbearable absence of sense.
Nose bleed. Now I seem to win, now to lose, he is saying. To begin with the dying experience has to be told from the narrator’s perspective. Because to be able to follow the story there are some essential personal details to fill in and a few other thing we need to know. Rat poison!
The reader gets pulled in. I don’t know how long we remain like that. Unlike her four volume Naples Novels, The Days of Abandonment by Elena Ferrante is under 200 pages long. It is gendered and includes references to other women with unbearable stories of an absence of sense, “the pages in which Anna Karenina goes toward her death…”, “…leafed through the ones about women destroyed”, Pp183. Sophocles’ Antigone, comes to mind as well: these are stories in which, as regards the unbearable absence of sense, the men by and large do not die well.
I haven’t stopped reading simply because I have reached the end. And I don’t know how long we remain like this.
Natural, healthy and health promoting, what are the essentials of an end-of-life caring network? The basics are a kitchen table (or similar), teapot, mugs, and cake or biscuits. In other words the caring networks we are talking about are ‘grassroots up’ by and with local people, and – if not in a war zone – are usually taking place in somebody’s HOME. They involve us in talking, sharing, caring, giving practical help, and – if we want to and we have a mind for it – some writing.
What do we KNOW about ‘Grassroot Up’ (by and with local people) end-of-life Caring Networks?
From community development research (Ref 1) we can say that caring networks are: 1. Benevolent, competent and capable of a variety of caring jobs
2. Usually have x1 person with experience of death
3. Can be any size, but the minimum seems to be x3 people
4. Comprise friends, family, neighbours, work colleagues (etc) – the involvement of friends is central and consistent
5. There is both a core network and an outer set of networks
6. Formal care providers and services (when mentioned) are in the outer networks
7. Can arise spontaneously or be initiated and facilitated
8. It is usually a primary carer who does most of the negotiating and organising
Where does WRITING come intoend-of-life Caring Networks?
“80% of us say we want to die at home, but only 22% do so”
Living as well as we can and for as long as we can in the PLACE of our choice: so how do we communicate the change that most of us want? It involves us participating in a movement for wellbeing –and social change. It is a movement towards openness and democracy, and challenges the concept of a managed death which requires professional support and knowledge where most dying takes place in hospitals – ‘cellular, private, curtained, individualised and obscured’ (Ref 2).
There are many different ways for us to give VOICE and find the right WORDS, and we don’t need to be the smartest cookie in the supermarket multipack to do it. Our caring networks will help us say the things we wantand tell our stories. We can take everything that has happened to us, turn it, distil it, and receive it back – and we can write it down if we want to – in the hopes it might help us, move people that read what we write, or be useful to others.
DIFFERENT WAYS of Writing in ‘Grassroots Up’ end-of-life Caring Networks
1. Bringing our Dying Home: Creating Community at end of life
This 2 year research project took place in Australia 2009-2010 with 94 people providing a rich visual, spoken and written mix of narratives about their informal caring networks. The project found people who resisted the managed death approach, and grew caring networks that broadened and deepened connections over time and supported those who were dying to remain in their place of preference. The research method for network analysis included large sheets of ‘butchers paper and textas’ on which people wrote, drew and illustrated their growing caring networks (Ref 3)
2. Macmillan’s Online Community: “I had the same thing happen to me”
This online community has forums, blogs, cancer patient support groups, all of which of course involve visitors and participants in writing on Desktop PC/Apple/Smartphone devices.
The story is spoken by Helen. She gives an account of her cancer journey and the positive effect of being connected through the Macmillan online community. Helen’s words for this much praised video have been scripted and are accompanied by an animated cartoon.
3. Diealog Programmes: Compassionate Community Hubs
This EOLC community-centred peer support/self-management approach (Ref 4) brings together local people to co-create and grow their caring networks. Diealog ‘Buddy Groups’ form an essential part of sustaining and supporting these caring networks, and rippling out engagement activities include writing at workshop events and written stories which are published online.
Main themes from written feedback from Diealog ‘Buddy Groups’ participants (2013-2014) were:
“Staying connected, and as much social contact as I want”
“Being supported and supporting each other as I age and face my own dying”
“Practical stuff mainly, small acts of kindness and tasks of caring (and for carers)”
“Feeling better and healthier in myself and more confident and in control of my future dying”
“Being able to think about and decide my wishes, especially the place and way I want to die”
“Helping each other with information about services and other resources”
“Having ‘buddies’ there to help me (if I want) to talk with my family, or doctors and nurses”
“Being able to be as open and honest with my ‘buddies’ as I want, and feeling safe talking about everything”
“Feeling I am helping others, and our ‘buddy group’ effect is rippling out and changing attitudes”
“Keeping things light-hearted – normal and ordinary – and being serious at the same time”
4. Seven Songs for a Long Life: “Singing is pure medicine for the soul.”
Film-maker Amy Hardie spent 3 years in a collaborative filming process at Strathcarron Hospice in Scotland with patients and staff, and has made a documentary in which stories of vulnerability are told, some are written down, and songs are created and performed.
Public showings of the film are frequently followed by a workshop in which we are invited to write answers to the following questions (these are much the same as patients are asked when they are first interviewed at Strathcarron Hospice):
1. What’s a good day for you?
2. If you had a terminal diagnosis with not long to live – but you didn’t know exactly how long – and your only symptom is that you get tired easily; what would be a good day then?
3. What qualities that you’ve expressed in your life do you want to be remembered by?
4. What actions do you take at the moment that express these qualities?
5. After a life-limiting diagnosis, can you still express these qualities in your daily life, or are there other things you might do?
What are the main OUTCOMES of ‘Grassroots Up’ (by and with local people) end-of-life Caring Networks?
Evidence from social network analysis (Ref 5) shows that the main impact of improved EOLC caring networks is increased social cohesion/social capital, achieved through growing and deepening our connections, and rippling out effects that reach other people in our local communities.
Direct therapeutic benefits from specific writing activities are difficult to research, but writing activities are almost always integral in one form or another to the primary increased social cohesion/social capital outcome. Writing activities also frequently contribute to the following related measurable benefits of caring networks:
1. Person-centred improved health status, and wellbeing
2. Empowerment, know-how and skills to act
3. Mutually beneficial interactions with formal carers.
I happened to pick up my copy of Death at Intervals by José Saramago this morning (opening words: ‘The following day, no one died, this fact, being absolutely contrary to life’s rules… (etc)’). I was also reminded that the front-piece of the book quotes Ludwig Wittgenstein; If, for example, you were to think more deeply about death, it would be truly strange if, in so doing, you did not encounter new images, new linguistic fields.
Harry Kratchnikov has been away on a mission the last few days. Suspending time. In mid-air. There is the figure of a man falling towards the earth – except that the present tense has of course also been withheld – and accelerating as he falls in the landscape, not hanging.
“Landscape”, meaning like in the painting ‘Landscape of the Fall of Icarus‘, although they now say that the work is by an unknown artist – Circle of Pieter Bruegel the Elder, they say – and thereby also suspending the lines of Auden’s famous poem:
About suffering they were never wrong, The Old Masters…
Except that the motion has now been placed in the past tense by the poet’s lament: the landscape was the falling man’s death. It was sunrise. It was over the wine dark sea. It was Mediterranean. Then it was: he had not meant to go there, but, flying too close to the sun, he had, while the other man (it was not his father) flew on. Only it was not heroic and distant according to The Old Masters, the death was everyday accidental and close. People were hurt by it. Imminent and contingent, the body of the man was not disappearing into the water besides the merchant ship sailing by with only the legs remaining visible after the splash, he was suspended in mid-air. Above them.
Dio and Trixie were walking along the beach hand in hand. The temporary absence of Harry Kratchnikov had changed the way they were behaving, or they said that they thought it had. Harry’s absence they told each other had taken away the pressure of time. They were as if on holiday. Walking hand in hand, pretending to be lovers. Which they were in truth, only in a different sense from the young images of themselves walking along the beach in shorts and short-sleeve shirts, and bare feet and toes digging into the already warm sand. Dark glasses. Not saying anything of consequence to each other. Not even thinking of sex for a time. They passed by.
There was no forsaken cry.
In plain and everyday language through the medium of the story, Death at Intervals, how well the writer Saramago did his thinking more deeply.
Midpoint in Ayurvedic immersion in Kerala. Hardships? I can’t say my ample tummy has reduced so far as to be pressing against my spine. Ascetic is rather a word that conjours up excess for me, and a practice for the few. Whereas hardships come to us all sooner or later in life regardless of our practice.
Still it is worth the question : How do we withdraw the energy we habitually invest in the world and our dependence on the external? Put another way is what stops us our greater fear (greater than the fear of death even) to reveal ourselves as we truly are?
Next week we head north for India’s two great cities of the dead and dying: Varanasi and Calcutta. Cutting through old illusions of Calcutta as a ‘city of culture’ with the writer Amit Chaudhuri (‘…ery’ I misspelt it). He returned to the city which he calls dead in 1999, to write, and his book Calcutta is the perfect guide:
- where the CPI Marxist party ran the city and state of Bengal continously from 1977 to 2012
- and where regardless the old villas and palaces of the once wealthy but now absentee are being torn down and cleared for new shoping malls and apartment blocks by out of city developers
- and where the old absentees (parents of Amit Chaudhuri generation) have returned to live their last years and then to die.
There is a cosmopolitan shape and an idea of underlying form ”I could be anywhere” he writes) in the writer’s mind, the lost illusions of the past and the dead facsimile’s of the present. Nevertheless in 1999 he chose Calcutta rather than Oxford (he still lectures periodically at Norwich Uni) to live in.Why?
P 98: “I remember thinking that, though Calcutta was now to all purposes dead, it possessed some secrets, and that there were discoveries for me to chance on here amidst the deceptive nullity – which, for whatever reason I could no longer in England”
At the BIG Mens Group (Hargate Hall November 13-17) this year I met Tom Falkner for the first time. He and I were in a small (x4 man) group together. Tom is about 70, Canadian, and the father of Rob Falkner. It was his first time at this men’s group. However, it was certainly not his first experience of men’s groups as Tom had been in the thick of them in London in the 1970’s (‘encounter groups’ in those days and more!).
There were many things I immediately liked about Tom, especially:
1. Turning up and being present
2. Being direct (“I can’t understand you Brits when you are are too subtle with your words”, he’d say)
3. Talking about the porous quality of ageing.
It is the last – the porous quality of ageing – which has really struck a chord and lasted with me. Of course when Tom spoke about this aspect of ageing, he was far more direct. “It is about loss and my lack of attention”, he said.
“Loss and different qualities of attention”, I replied and we talked about a question which I have been turning over in my mind: What if the whole of my/our ageing happens for a purpose? Tom and I liked the shift of emphasis.
Loss and different qualities of attention.
Don’t get me wrong, the worst of ageing – decline and the body’s deteriation – is no joke. But what if ageing is also about revealing our true character? This is where we also connect with a porous quality: What if our ageing is about becoming leaky for a purpose? Leaking in, and leaking out energy and passion to colour the world bright.
(“And her dark pubic hairs”)
Before we parted Tom and I agreed to continue to explore this further together, and under the above call-sign (NB: including the brackets). (“And her dark pubic hairs”) – the phrase comes from Norman Mailer’s 1984 novel Tough Guys Don’t Dance. For more see http://www.goodreads.com/book/show/12469.Tough_Guys_Don_t_Dance
Leaking in: a voice has also told me recently to ask for help – “Help us to all tell our stories”, it told me to say. We invite others to join us in the exploration of loss and different qualities of attention. And using different kinds and forms of ficto-documentary activity* .The voice went on, try face to face, on paper, privately and publicly, and online. Here is a recent example of one storytelling style:
“But the histories are rubble now and mostly lost in time, and there are only a few surviving fragments of individual stories, broken narratives, a dusty blue atmosphere of men’s past sadness, and a few lasting things like photographs”.
This is a sentence I wrote recently from out of one of three stories I have to tell about men in my family who mean the most to me – Grandfather, Father, Brother. See previous post and below to find out the blogs where you can read them and more.
* On Loss and Different Qualities of Attention: different kinds of ficto-documentary activity
- “Ageing is no accident” Theory
David Hillman. Force of Character, and the lasting life (1999)
We often put pairs of words together, and repeat ourselves. Some of the pairs we would like to think of as opposites. Death is not life. Life is not death. And so on. Then we could say Life/Death is an antonym.
But a little on maybe we want to say, “Perhaps Life/Death is a false antonym”. Because we can’t have one without the other. So now we start to think that Life/Death are not opposites. Actually we might even start to think of the Life/Death pair of words as synonyms. Or, hedging our bets, false synonyms, if we think that we are going too far.
Then there is the ‘/’ oblique sign between life and death. Is it merely a signal of the pairing? Or does it also signify? Does it signify a gap for instance, like the caesura in a poem? A pause, which tells us we need to take a breath.
(“…in real life there is always resistance, even though we have to breathe constantly. Inspiration. Brief pause. Expiration. Brief pause. Resistance is probably related to authenticity“) What is our thinking here?
Halfway and we need to take a breather, and continue our search for meaning by other means. In 1982 the Georges Perec published an article piece of longer-form journalism (or feuilleton as we like to call this form of writing) called ‘THINK/CLASSIFY‘ in la Genre Humain (reprinted in Species of Spaces and other Pieces, tr John Sturrock 2008). Note the use of capitals, inverted commas and the oblique sign were all in the title.
Section K of the article is titled ‘Some Aphorisms’, and explores the idea of creating a certain number of formulae for pairs of words (eg using a formula such as: ‘A little ‘A’ carries us away from ‘B’, a lot brings us closer‘, and so on). Perec imagined a computer programme, which it would be easy to construct that “produces ad lib a near infinite number of aphorisms, each one of them bearing more meaning than the last”.
Perec provided a list of a short series of formulae (Page 203) using the words forgetting/remembering to create some aphorisms. Here is the same list now applied to Life/Death: Life is a malady for which Death is the cure Life wouldn’t be Life if it weren’t Death What comes by Life goes by Death Small Death makes big Life Life adds to our pains, Death to our pleasures (I thought about reversing the Life/Death pairing here to Death/Life, but properly resisted the temptation) Life delivers us from Death, but who will deliver us from Life? Happiness is in Death, not in Life Happiness is in Life, not in Death A little Death carries us away from Life, a lot brings us closer Life unites men, Death divides them Life deceives us more often than Death etc.
Perec now asks in the article, “Where is the thinking here? In the formula? In the vocabulary? In the operation that marries them?”
‘LIFE/DEATH’: It may be noted that 1982 was also the year of Georges Perec’s death at the age of 46 from lung cancer. He tells us about his strange experience (P 189) while working on the THINK/CLASSIFY piece: “What came to the surface was of the nature of the fuzzy, the uncertain, the fugitive and the unfinished, and in the end I chose deliberately to preserve the hesitant and perplexed character of these shapeless scraps, and to abandon the pretence of organizing them into something that would by rights have had the appearance (and seductiveness) of an article, with a beginning, a middle, and an end”.
“I am ready to take the stand”, the middle-aged man said in a gesture of willed objectivity which reminded me of the work of another writer, George Perec. Not Life A User’s Manual. No, nothing so large, I was being reminded of a minor, mostly forgotten piece called Espece d’espaces written by Perec in 1974. The work is less than 100 pages in all, and is to be found in the ficto-documentary collection called Species of Spaces and Other Pieces (tr John Sturrock, 2008).
Perec begins Espece d’espaces with a Foreword. The first sentence goes like this, “The subject of this book is not the void exactly, but rather what there is round about it or inside it (cf fig 1)”. Figure 1 itself is printed on the front papers of the book before the contents and the foreword. The Figure is called ‘Map of the Ocean’, and consist in a drawing of a square on an otherwise blank page, except for the title underneath and then under that in brackets ‘(taken from Lewis Carroll’s, Hunting of the Snark)’.
As much as I know already from this beginning that this is an autobiographical work which Perec is giving in to, so too I knew that the sentence spoken by the middle-aged man was also the beginning of his autobiography. He himself is the subject. Of course like Perec no facts about his life will be revealed, but he will be telling what is round about it or inside it.
Giving in to becoming the subject, and it will seem to us is that it is a void. But not exactly because in this autobiographical work by Perec or a middle-aged man we are already aware of some things. For one thing we are aware of his absence. He is absent from the story, and this has already created an intensely sad atmosphere (what we know from Perec’s life: he was a Parisian Jew born in 1936, whose father enlisted as a soldier and was killed in action by the time he was six and his mother murdered in Auschwitz before the end of the war). He will not provide this information, nor he will add to or adorn his account with any other biographical details because he is confident we already know this sadness simply having opened the cover and turned the blank front pages, perhaps not even noticing the Figure 1 in the first instance.
So too the middle-aged man’s remark, “I am willing to take the stand”. As if written at the start of a foreword to his own work of autobiography, and I know already that nothing will follow, that no narrative will be provided, and no life story is to be told. There is the same absence as with Perec. And there is the same oceanic quality of sadness as in the front papers of Espece d’espace, because he has already told all the information about his life that it is necessary to know. Oceanic, and the sadness seems all in shadows, but just as Perec account of Espece d’espace unfolds, when we look closer and listen deeper what is around about it or inside it is suffused with lightness and with light.
(Espece should have a grave accent on the middle ‘e‘ . Please who can show me the key to write this?)
Outlaws crop up when you least expect them to. Here are positive signs for continuing with this ficto-documentary writing, and the reader can choose for themselves what to believe or disbelieve. Over this last weekend I keep missing a series of phone calls, probably about seven in all, from a man who I have never met before, but for whom I have received a message that he wishes to talk to me. I shall call him Wallace. This is not his real name, and the truth is that he wishes me to conceal it for reasons that will become clear as this story unfolds. I keep missing the calls from Wallace because it happens that between last Friday and Sunday evening since I am travelling from England to Scotland and then back again. I also call back Wallace on his number on occasions but there is always no answer. However, messages are left by both of us, and we finally get to talk on Monday morning.
Wallace speaks in a cheery and direct northern accent and I immediately warm to his voice. After brief introductions between us and to explain the main reason for our talking, I say to him, “Life is precious”.
“Occupy Death”, I say to Wallace near the end of our conversation. He laughs and says that he likes the idea. But I am troubled in my heart of course in case we don’t get to speak again.