Radical acceptance
A dialogue on loss, dementia and dying
Radical acceptance - A dialogue on loss, dementia and dying
By Jena Griffiths and Steve Thorp
Introduction
In our last post, Jena Griffiths wrote a moving and evocative essay, Last Cliff, on her experience of her sister Gwyn’s illness and death – her ‘last edge’. Jena had submitted some poetry for the latest Unpsychology Magazine, on the theme of Edges, which will be published later this summer. In the following weeks, we exchanged emails about writing and edges. In one of her emails, she wrote: “Thanks to your Edges prompt, I also wrote a story about my sister shortly before she died, living between two worlds with Lewy Body dementia. I'm glad to have written about this experience. The story wouldn't have materialized without your prompt. So thanks again.”
The essay promoted a lot of thoughts and emotions for Steve. His own mum had died with Alzheimers a few years ago, and he suggested a dialogue between Jena and himself – a conversation about their experiences, what they evoked and what they might still mean…
The dialogue
Steve
Jena, your piece about your sister is beautiful. Such a tribute to her, and there’s something so heartbreaking there about the imagining of her edge - her last cliff. It resonates with me for other reasons too. There was so much in the detail of your piece that I recognised from when my Mum was in a secure nursing home with Alzheimer’s disease. It’s the small things that catch us, I think. Remembering the door code, for one!
Mum died a few years ago now, but my Dad is now also in a dementia care home. He’s been a much happier soul than Mum was and his illness has been less distressing (for him and for his family). He’s well looked after and is a very old man now and knows it, which is very different, I guess, from your sister’s circumstance.
As I wrote in the introduction to your initial piece, there are other dementia stories swirling around in our family (as there are in many), though these are not mine to tell right now. I can, however, relate my own lived experience to yours, and that seemed like a good starting point for a conversation.
I suppose my own curiosity took me first to a question about meaning. I wonder what all this meant for you? Those conversations about family history; the shared imaginary experiences; how memory plays; the ways in which “separation is just a game, an idiosyncratic illusion?”– to use your lovely words.
Jena
Hi Steve, thanks for your positive feedback, encouragement to complete the piece and for your careful editing. Dementia is a common family topic that often gets buried due to shame or other considerations. I hope the story or our conversation helps someone else in this regard.
Regarding meaning, this is such a big topic I’m not sure where to start!
I think we humans are meaning makers. We have the capacity to reframe the context or our perception of a given experience and in doing so shift the meaning radically and thereby also shift the feeling state we take ourselves to. While I try to keep an open/thought-free “beginner's mind” regarding my sister and her condition at the same time, there’s another part of me that’s absolutely convinced that life happens for us not to us.
I’m influenced by the work of several people in this regard:
David R Hawkins and specifically his map of consciousness and the various attractor fields (feeling states) that we are born into or gravitate towards.1 In his later work he found this wasn’t a permanent condition; the way out is through. A willingness to digest and process (feel) whatever may have been buried and not yet been digested. It seems to me as if we are handed a baton by those who came before us.
This links to the concept of ancestral healing, the family constellations work of Bert Hellinger, Jill Purce and others which has its origins in African Ancestral healing practices, in which seven generations are thought to stay in the game and watch over the living. Then there’s also the collective trauma healing practices of Thomas Huebl and others…
Steve
It’s interesting where we go with meaning isn’t it? For me, I think that a lot of the influences I was carrying around life and death started to fall away when Mum was ill and dying with Alzheimers. The experience seems so basic and visceral, and her suffering so stark, that the ‘places’ (authors, teachers, ideas) I had been searching didn’t seem so important anymore.
One idea you raised from David Hawkins that does resonate is that ‘the way out is through’. This feels true, but it took me to a very phenomenological, experiential place. Sometimes, when I was with Mum when she was ill and dying, I was actually bored! I felt really guilty about this at first, and tried to make those times ‘meaningful’ in some way – to do something ‘healing’ or ‘soothing’, or even draw some kind of metaphor or wisdom from it. Actually, though, it was all just a bit shit. Once I accepted this, it seemed easier somehow.
I had my memories of Mum, and these became a way to connect with her, Gran (her Mum) and others in their wider community. One recurring question I did have near the end was about who this person was. Was she still Mum? And this was a hard one. I’d been working with ideas of soul and acorn (from James Hillman’s work mainly), but faced with this husk of the person I remembered, it was hard to stay true to this.
So, I think my meaning-making world narrowed and shrank when all this was going on. And my Dad was also struggling greatly, of course – it became very existential and everyday. I feel much less tied to meaning since she died, if that makes sense. It wasn’t a relief, exactly, but there was relief in there somewhere…
Jena
It must have been incredibly tough for you, being faced with your mum’s gradual decline on a daily basis. There’s a huge difference between flitting in for a few weeks once or twice a year, as I did, and what you and my niece experienced as a daily grind for years on end. It’s understandable that all sense of meaning flatlined. We can only connect the dots later, in hindsight. Which you did. As you said earlier, “This experience pervades my creativity and my life. It reminds me of mortality…”.
I’m in awe of all the beautiful work you’ve done since!
It seems we are always collaborating with each other on multiple levels to feel more deeply and there’s a difference between lives cut short and those that last beyond three score and ten. Both my parents lived well into their 80s. My father suffered from dementia which was brought on suddenly through a trauma while in hospital for routine tests. My mother suffered a massive stroke which felled her suddenly and she never recovered. It was awful.
Hillman’s acorn/oak tree analogy resonates with me deeply.2 I overlay the tree analogy onto Hawkin’s map of consciousness and see it as an up-down, up-down energetic process starting in the middle at the level of courage. It takes courage to incarnate. And then we reach down into the bedrock of our family system for nurturing and stability. Roots and then shoots. And the deeper we are willing to go the higher too. As Carl Jung once said: “No tree can grow up to heaven unless its roots reach right down to hell.” Each family’s nervous system is ancient and quite individual depending on how our ancestors survived. Do we freeze, flee or fight? For growth to occur, the feelings or traumas that haven’t been processed or composted by one generation need to be presenced and composted/felt by future generations.
Like trees, we are constantly collaborating on multiple levels with other living systems or organisms, and who knows, if we look towards quantum physics, perhaps it's way more complex, an infinite number on multiple frequencies. Wherever consciousness is. And consciousness is in everything. There’s a field of consciousness that moves through everything.
Steve
Hi Jena, thanks for your concern. Actually my experience was not a daily one. I live a few hundred miles from where my parents lived, and so it would be a few days every few weeks, maybe sometimes a couple of months between visits, relaying with my brother, sister and some other family members. So the change was more gradual, but each visit meant that her decline seemed more obvious.
And each visit would have a different tone. I might be visiting with my daughter and her toddler, or with my brother or sister - or alone. I might be responding to a crisis, or just on a ‘routine' visit. I don’t know whether being there every day or two might have been better or worse. My Dad found the daily routine unbearable near the end, and the mix of guilt, duty and avoidance tore at him. For me (I can’t speak for my siblings), the combination of driving a long distance to be there and the experience of being there was sometimes overwhelming – though more so when I got home and collapsed!
It’s funny (peculiar). The idea of ‘collaboration’ doesn’t really resonate at all for me – though there were and still are strong family bonds. And the ‘soulmaking’ I was working with at the time – acorns, trees and the rest – seemed to fall away during that period – more so since her death and on through COVID and lockdowns. I find I can’t work any more with those psychospiritual models and metaphors. I can still access a sense of complexity and depth through poetry and poetic image however – what emerges from the ‘hidden unseen’ (something like Nora Bateson’s Aphanipoeisis perhaps).3
It might seem paradoxical, but I take comfort from the idea that consciousness is not everywhere; that it is emergent in evolved and socially connected bodies and minds (a miracle in itself, albeit a material one); that within the genetic parameters that each child is born with they have the potential to become who they become (which is how I read Hillman’s acorn); and that when Mum died, she died and was gone.
How humans travel radically different paths with their experience is also amazing thing. I don’t know if I am right about these things, but I just can’t get a sense of things like frequencies, dimensions and fields – or even ‘souls’ sometimes these days, beyond something like Irvin Yalom’s elegant perception of the ‘mortal soul’,4 that has an experiential, existential beginning and end, and lives on in memories, like ripples in a pond…
Jena
Hi Steve, Thanks for your references. I particularly like Nora Bateson’s concepts of Warm Data and Aphanipoeisis. Nora’s prose/poem Urgent Mud is a beautiful expression of what I was trying to describe above. So yes, I see your point re poetry or art being a better way to communicate.
It’s good that we currently think so differently because this enables us to have a rich exchange. Being able to entertain another person’s viewpoint at the same time as one’s own is a relatively new capacity, an essential one as views become more and more polarised.
Perhaps we identify too strongly with the physical form. And in doing so chuck out the baby with the bathwater? What survives when we die or when the personality dissolves?
Likewise, what happens when we go into flow states or spaciousness through meditation or any other process and in doing so create amazing art or new inventions. Can we really claim this as entirely our own work? It seems quite likely that every invention or creative masterpiece was channelled from some unknown source.
I haven’t read Yalom's thoughts on death and dying and would love to hear more about how you found his work useful with regard to your Mum’s illness, your sense of your own mortality and the resulting work you produced.
I like the idea that we are spirits at play having a human experience, starring in each other’s movies. I guess I was influenced many years ago by the channelled books of Jane Roberts, such as ‘Seth Speaks’ and ‘Oversoul Seven’, where spirits play act for each other and can be born backwards and forwards in time. I’m also influenced by ‘A Course in Miracles’ (ACIM) a vast body of work channeled in the 60s by two agnostic psychologists. From this perspective, God is all that is and everything else is an idea in the mind of God. Love is all that is permanent and the rest is a temporary illusion.
Perhaps it was easier for me to see my sister Gwyn from this perspective because the severity of her illness fluctuated on a daily basis. Her daughter told me that she couldn’t order a new prescription for her glasses because the quality of her vision kept changing. On one day her eyesight would be really good, on another day terrible. So too her lucidity and capacity to relate. There was a childlike innocence about it.
Recently, I attended a talk given by a British quantum physicist, Libby Heaney. After a decade in the field she broke ranks with science and turned instead to the creative arts to better explain her perception of the universe from a quantum perspective. Heaney describes the universe as composed of matter that is slippery, non-binary and “queer”. I prefer to think of it as magical or perhaps a better word would be “enchanted”: Accept the mystery!
Regarding consciousness, maybe I’m interpreting this word more broadly than you are? What would you consider conscious and what not? The documentary film My Octopus Teacher, certainly asks us to rethink our anthropocentric prejudices, as does the work of researchers into plant cognition.5 Maybe we are all like laptops connected to the cloud? Humans have larger hard drives (and therefore are capable of feeling separate). The others are always connected and streaming. So, where do you or I start or you end? Some fascinating research has been done on this question by neuroscientist Vilayanur Ramachandran, who suggests that we construct identity through mirror neurones. Without a feedback system in our skin telling us we’re a separate entity, we feel everything that others around us are experiencing. 6
My journey into the world of ancestral healing started at the end of 2015 when I attended a year-end weeklong meditation workshop in Israel with Thomas Huebl called “World Work”. I naively thought we would be healing the world through meditation but what was really going on was deep ancestral trauma resolution. Many of the participants had lost entire families to the holocaust and others were the offspring of the perpetrators…
Steve
Hi Jena, there’s such a lot there. I recognise the excitement you experience in exploring these ideas and coming across all these different experiences and perceptions. I shared that motivation to be with and integrate these different ways of seeing, though I’ve been deeply sceptical of more esoteric spiritual ideas, such as ACIM and channelled soul and spirit work.
Having said that, I began to recognise that language makes a lot of these conversations difficult. When you say that you prefer to think of the universe as ‘magical’, I love the idea of it being ’slippery’ and ‘queer’! And, as you point out, we can mean radically different things when we use words like ‘consciousness’ and ‘soul’. The metaphor creates the image, and I always loved playing with this stuff…
Then something shifted for me.
I think the falling away of ‘meaning’, which was coming around the time Mum was dying, left me feeling less interested in these explorations. It felt like a profound simplification, a paring back. So it was not that I wasn’t touched by the complexity of these ideas, but I recognised that, in the moment, the experience was what it was… is what it is. And that was enough. I took a step out of the ‘debate’.
You asked about the Irvin Yalom ‘effect’. I’m not sure there was one really. I’d enjoyed his ideas and writing since my psychotherapy training, and his existential ‘frame’ for psychotherapy was one I found really helpful in my early career and at different points throughout. His book, ‘Staring at the Sun’ wasn’t really part of my experience of Mum’s death; I’d read it much earlier, and enjoyed his restatement of the idea of a ‘secular soul’, which is something I was interested in exploring back then.
If I return to what really affected me and stays with me from when she was dying and in her last days, it was the ordinariness of it. It seemed so materially normal for her to go. Before then, there was pain, questioning and conflicting emotions and, yes, a search for meaning of some kind.
The dementia part does raise questions about consciousness (whatever that is!); scientific questions mainly for me; but there was an absence which was comforting too.
I’m just writing this as it comes, Jena, so I don’t know if it even makes sense to you reading it! It’s like all the binaries fell away - even the need to ‘integrate’, ‘heal’ or ‘understand’. That bit of the story just felt – feels – utterly complete.
I realise there’s a bigger question, the one you raised about Thomas Huebl’s ‘world work’, and I don’t know how to respond to that one – not in relation to where we started this dialogue at any rate. The only phrase that came to mind was ‘radical acceptance’. It popped in, but I couldn’t for the life of me define it!!
Jena
I’m just re-reading our dialogue and see I didn’t answer your question regarding sharing the ancestral story with my sister which you found peculiar (funny). I have mixed feelings about what that was all about. I was attempting to reframe her illness, to see if I could give her an interpretation that might shift her in some way. And, at the same time, thank her for inadvertently helping me while I was trying to help her. My goal was for Gwyn to feel included, and valued. People in frail care homes are usually excluded from conversations or treated like they aren’t even in the room even when they are being discussed. Sharing what I had just learnt about one of our ancestors felt connecting for both of us. She probably didn’t understand much, although at times she did seem to. I still wonder about the fact that she relaxed in her last few days. I’m not sure how that happened.
The “real” ancestral healing I participated in was over a few years through group work with Thomas Huebl and also with Markus Hirzig in small groups and sometimes privately. Much was about embodiment and processing feelings, which is still a work in progress for me. I discovered though this experience, that if there’s a lot of fear in the room I easily become ungrounded and I suspected Gwyn was the same. I thought it might help her to recognise that the fear wasn’t hers but something much deeper and more pervasive, something ancestral. So I made it Emlyn’s fear we were talking about. And his fear that it was our job to let go of. Even though that technically may not have been true, he had a compelling story that we could easily peg it to.
You were fortunate to have a lot of family living in the region. I think this is important for everyone involved. It certainly helps to share the load with other family members. Gwyn unfortunately was on the other side of the world, isolated from her larger network of family and friends. She was diagnosed was Lewy Body Dementia when she was 51 and was given seven to ten years life expectancy. She was still able to lead a relatively normal life for three or four years. She lived in her own home, had a circle of friends, and was still able to travel for a few more years to join annual family gatherings with a little assistance. She was in frail care for 6 years, and passed 12 years after her diagnosis, age 63.
Our mother had a stroke at the end 2013, the same year Gwyn went into frailcare. My focus was on spending time with my mother to see if I could help her recover. That was not to be. The year after mum passed we made the family gathering near where Gwyn was so that she was included. And from then on I visited once and sometimes twice a year until she passed in 2019.
For the duration of her frail care the burden of visiting her weekly was almost entirely her daughter’s. In South Africa, the burden of long drives and weekly visits to see my parents in frail care fell heavily on another sister’s shoulders. You mentioned your dad feeling guilt. That’s where I went too sometimes. And then I’d push it away through disassociation/over-rationalisation.
And perhaps this is where radical acceptance comes in?
Radical acceptance opens a door that wouldn’t be there otherwise. Although it probably means something different to each of us and different again to anyone else reading this. For me, this brings us back to “the way out is through” and Hawkins’ map of consciousness where each feeling state (judgement, anger, sadness, guilt and shame etc. is a different frequency. So the question becomes “where am I right now?” What feeling/s am I avoiding?
In his later years, (particularly in his book, ‘Letting Go’) Hawkins taught that “the way out” is through feeling; to deeply feel whatever is arising (and thereby digest) whatever feelings are arising in the moment without enlivening this particular feeling state through thought.
It certainly helps to remember that a feeling can’t last more than 90 seconds, unless we bring that feeling alive through thought. And the mistake I made initially was trying to do this work alone. For example, I found I could sit with sadness and allow it to dissolve and turn into spaciousness in my chest but I didn’t know how to use that freed up energy elsewhere. Some feelings (such as shame or guilt or fear) are difficult, nearly impossible, to digest on one’s own. We need to share “eating an elephant” with others, a friend or therapist like you, or a support group of some sort, in order to help digest whatever intense feelings we are swimming in rather than take the easy route and bypass into disassociation. “We think in order to avoid feeling.” It’s always tempting to switch to theory and hypothesis as I notice I have done throughout our above conversation.
Perhaps that is useful to notice. “It is how it is.” Radical acceptance! And then of course, how to course correct.
Steve
What you’ve written just now is intensely moving, Jena. And it reminds me that ‘radical acceptance’ could easily become a theory too! We can forget that accepting that we go into theory or hypothesis is also part of the ‘how it is’. There are loops within loops, but that’s OK.
There might be another step, which is to accept what is, and to course correct, but also to accept that any choice we make has consequences and implications in the wider contexts of our lives and, by ecological definition, the lives of those around us…
Thanks so much for the insight…
Jena
Beautifully said Steve. I couldn’t agree more.
Notes and references
David Hawkins was the author of a number of books (including Letting Go: The Pathway of Surrender), and developed the Map of Consciousness: https://veritaspub.com
James Hillman’s ‘acorn theory’ is set out in his book The Soul’s Code - In Search of Character and Calling. There’s a good summary of the theory in his interview with Scott London here: http://scott.london/interviews/hillman.html
Nora Bateson’s Aphanipoiesis is defined as “the unseen coalescence that brings about vitality” . Her Unpsychology essay on the the word and idea is HERE and also in Nora’s new book, Combining: https://www.triarchypress.net/combining.html
Irvin Yalom’s book, Staring at the Sun, is a radical reflection on death from an existential psychotherapy perspective. A more recent book is A Matter of Death and Life: Love, Loss and What Matters in the End written with his wife Marlyn as she was living and dying with cancer: https://www.yalom.com
Thus Spoke the Plant by Monica Gagliano a research scientist studying plant cognition & Becoming Vegetalista, by Stephen Harrow Buhner.
See https://embed.ted.com/talks/vs_ramachandran_the_neurons_that_shaped_civilization for a summary of Vilayanur Ramachandran’s research.
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I enjoyed reading this dialogue. It left me thinking that sometimes we find ourselves in search of a unifying theory or overarching narrative, and sometime we just don't.
When my mother-in-law, Helen, died we were gathered in the living room. We popped in and out of the bedroom next door. At the start of the vigil she said a few occasional words, not very clear. Mostly she slept. Over the hours, her breathing grew slower and shallower then stopped. She was a small woman and we noticed how death made her immediately smaller. Something was gone. I thought of the film '21 grams' - in the film the weight of the soul. She was a few days short of 103. Her life had narrowed down and narrowed down. She was ready to go, and then she was gone.
I'm looking through glass doors into my small patio garden. The blue geranium and the pink geranium flowers are dancing and sparkling. The grasses are waving. The holm oak that forms the backdrop is swaying in the wind. And that's it really. Just bathing in it. Just allowing the beauty. Just being here.
I really appreciated this dialogue between yourself and Jena. It chimes with thoughts I have and it is good to see these so well expressed. I also believe that one way forward is through telling/sharing/showing our personal experiences, as they become authentic connections with others’ different experience and so we co-evolve. I particilarly liked:
I began to recognise that language makes a lot of these conversations difficult. When you say that you prefer to think of the universe as ‘magical’, I love the idea of it being ’slippery’ and ‘queer’! And, as you point out, we can mean radically different things when we use words like ‘consciousness’ and ‘soul’.
… and
...the falling away of ‘meaning’…
"Radical Acceptance" is now in my vocabulary and I should also say I like the sense of ordinary that was somewhere in the conversation, we are far too intellectual too often!
Thanks Elspeth