Thanatos, Thanatos wherefore art thou Thanatos? And for that matter WHO are you? Are you the unregenerate savagery that is always waiting to burst forth?
Yesterday I went to the movies! I saw The Danish Girl: a further adventure into gender and sexual identity. A moving account of one man/woman’s story set in the 1920/30s and presumably what were the early attempts to treat with surgery. I think I must make the assumption that transgender issues have always been with us since the dawn of time, perhaps until the advent of settled existence, agriculture and the growth of urban living with a pattern of a brutal patriarchy to give order, to keep order once the group size went beyond what could be managed through mere cooperative practices, they became shamans, seers much as the figure of Tiresius suggests, a being who has experienced being both man and woman. And now we are interested in looking at each other, looking within ourselves to see what is there. What is us? What isn’t us?
And looking before death takes away the capacity to see: increasingly an issue that accompanies us as we age. With some trepidation, but also with great interest, I approach my 70th birthday. A process which seems to demand more and more letting go. What do I have to keep hold of? All this stuff that I have accumulated!
After the dust has settled, after we have picked ourselves up, after we have checked to see if we are still alive, after we have looked around to examine the damage . . . what do we do then? Where do we habitually hold ourselves, where (and how) do I habitually hold myself? The question arises because of the imperative to enter into life, and after the crisis to re-enter into life.
There’s a certain reflex of: better not, it’s too dangerous. Is it supposed to be dangerous? Is it as dangerous as we make it? Do we get extra points for living to a ripe old age? Do we get extra points for taking risks, extra points for outraging the populace?
The task of entering into life presupposes a level of alienation from life. As though life is the other. Do we put life and nature together; parts of the same thing. This thing being “other”. There is me and there is other. Do I still work this out as I did as a child? Had I got this sorted out sixty years ago?
Then I want to ask a question about gender, sexuality, sexual identity: could it be seen that women are drawn to life in the way that men are drawn to death. Men are ruled by Thanatos and women by Eros. And no doubt there are many individual exceptions. But my sense is that I have learned about life from women . . . And then again, what is it I have learned from men?
It’s all questions, only questions, questions, questions, questions until the blood pours from every orifice.
Oh yes let’s have a metaphorical explosion! A metaphorical IED! Lots of squeaks and screams as the rockets whizz this way and that. Would you just look at that old stall, it’s been left out in all weathers, not even covered through this winter; should we burn it? Shove it out, break it up and into the hungry wood burner. At least it will keep us warm for a while.
What can we do with this “dead God”? Have we sufficiently disposed of the body. The fire has died out. Blackened faces peer out from the smoking remains. Singed eyebrows. Grinning white teeth. Absurdity raises its hand. It wants to say something about the utter futility of this practice. Can’t you see!
Not really. Or at least . . . Yes, we collapse, we don’t know which way to turn, nature takes over as culture empties itself . . .
But then we start talking, laughing; the humour is inescapable.
You mean we have to go on?
I think we do – so that’s a yes.
Yeah every day, except we may be allowed one day off each week, the small print is too small for me to read.
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.