Saturday 10 November 2018

Enquiry

Hello.

There's a subject area in which I am very interested, but am failing to find my way to the work on this topic that's exactly what I'm looking for.

It's to do with dying well.

When I was a very young woman, I began to explore into how to live well. St Francis of Assisi and Mohandas Gandhi influenced me strongly, to the extent that I became convinced (I still am) that a life of disciplined simplicity lived in some form of community was key to human flourishing.

Also as a young woman I became interested in how nutrition fitted into the shalom of creation, and the part it played in the practice of compassion and pursuit of health. 

I developed a strong preference for alternative therapies over mainstream medicine, and explored into healing herbs, naturopathy, homoeopathy and spiritual healing. 

In keeping and caring for animals and looking after my home, I turned to the work of Juliette de Baïracli Levy, from which I learned a huge amount. Back in those days, she was still producing animal feeds, and I used to buy her muesli for our collie and wolfhound, and followed her advice on caring for our goats.

When I started to think about becoming a mother, I read the work of Ina May Gaskin, Frederick Leboyer, Sheila Kissinger and Michel Odent. Ina May Gaskin's book Spiritual Midwifery is one of the best books I've read in my life. I found her guidance immensely helpful in pregnancy, childbirth and the neo-natal period.

Once I had become a mother, the education of my children became the focus of my attention, and my teachers were the great educationalists John Holt and A.S.Neill.

Throughout all of this, in addition to constantly absorbing Christian teaching in person from a number of wise and inspiring leaders, I also found light and wisdom in Lao Tsu's Tao Te Ching and in the writings of Thich Nhat Hanh. A few others — Stephen Gaskin, Carlos Castenada, Sheila Cassidy, Ursula le Guin, David Whiteland, and no doubt others I have forgotten, have also shaped and enriched my thinking.

During my middle years (my thirties, forties and fifties), I had a great deal to do with death. I spent some years working as the free-church chaplain in a hospice. As a pastor of, in all, ten churches, my work included time spent with chronically sick, dying and bereaved people. During these decades I took literally hundreds of funerals, specialising in working with bereaved people to craft liturgies that would express exactly what they needed to say in these deep and tender farewells. I also accompanied my second husband through his own dying, so that it could be — just as he had wished — in the peace and privacy of his own cottage in the woods, surrounded by birdsong and many wild creatures, blessed by music, touched by the night breeze and lit by dawn and dusk, by stars and moon and sun.

I have also worked as a care assistant in a palliative care context, with people dying or chronically ill. And I have worked as a care assistant with comprehensively disabled people as well.

As time has gone on I’ve encountered a variety of health challenges myself. I have two elves — my Mental Elf and my Physical Elf, and both require thought and attention to flourish.

I have learned a lot about natural remedies and nutrition, and have successfully addressed a variety of difficulties such that I am now very well.

But now that I am in my sixties, I want to begin learning about natural and peaceful death. So far, I have been unsuccessful in finding my way to exactly what I’m looking for.

There is a UK movement for natural death, which focuses mainly on funerals — but I have considerable experience in that area; it’s not that I’m looking for.

The Dalai Lama, and various other Buddhist teachers, address to some extent this subject area, but in general I have found their books (though no doubt wise and learned) boring and wordy, and I am not very interested in following religious methods and exercises.

I recently came across a book which I read eagerly — Katherine Mannix’s book With the End in Mind: Dying, Death and Wisdom in an Age of Denial.  It’s well written, and she is an engaging writer and delightful person, but it didn’t have the information I wanted. It was full of stories about people’s actual deaths — but I am very familiar with end of life care in a hospice, hospital, nursing home or home context. Also, it deals with dying after going through the terrible ravages of chemo and surgery etc; there isn't one truly natural death in the book.

I have on watch a book by Glen E. Miller called Living Thoughtfully, Dying Well: A Doctor Tells how to Make Death a Natural Part of Life. I’m going to investigate that.

I have been helped and supported in my own health journey by the work of Charlotte Gerson, Eric Berg, Tom Monte, Gerald Green and others — but their work is solely focused on curing diseases; they don’t address the questions I have about so managing life that the transition from living to dying to death is managed with dignity, understanding, intelligence, peace and simplicity. And I want to know about that, because all of us are mortal and must one day consider this carefully.

I have had plenty of opportunity to watch death and dying both well and badly accomplished, and I do have some definite ideas already, but I feel that now I am starting to grow old it is time to begin my education in this area.

What I really want is someone who has done for the subject area of dying what Ina May Gaskin, Frederic Leyoyer and Sheila Kitzinger did for the subject area of pregnancy and birth, and J.S.Neill and John Holt did for the subject area of the education of children.

At present I have no disease. I am very well — though I certainly feel the increasing slowness, weakness, quietness and detachment of ageing, which is not a problem to me.  I have no desire to live a long life; I would prefer not to live to be very old (as in, eg, 90s), and I don’t mind if I die in my 80’s, 70’s or 60s — even next week is fine, though it would be irritating to my publishers who have just signed me for a new book to be delivered in the late spring of next year.

It’s not that I am sick and want to read up on the management of it. It’s more that I am looking for general advice/wisdom on the natural, nutritionally based management of growing old and entering death in a life committed to quietness and simplicity.

I have lots of thoughts of my own, but if there were only a writer like Ina May, who could supply lots of case studies of what ageing and dying looks like outside the interventionist medical model, supported by skilful means, wise practice and nutrition for optimum health, I’d be very interested to read it. And I like books with pictures.

I feel a profound distrust of Authority — whether educational, political, medical or religious; I've had some wise and helpful advice from health professionals, but also some that was inaccurate and lead away from shalom; and I cannot help feeling there are better paths to follow, in managing the decline of life and the beginning of dying, than the poison/cut/burn alternatives offered by mainstream medicine.

So, friends, if you know of a writer or speaker or teacher, whose style is lively and accessible, who addresses the specific area of how to manage the transition from living to dying as our ship turns homeward — with an emphasis on nutrition, natural lifestyle and simplicity, I’d be most interested to hear more.

Thank you.

xx




10 comments:

Anonymous said...

This isn't really what you're asking for,Pen, and you might not want to publish this comment ;o)
In the modern witchcraft movement there is a tradition (borrowed from Charles Leland's work on Italian folklore) that the witch can only die after giving the power to someone else.
Of course when old Gerald Gardner was creating Wicca he made death a necessary part of rebirth so by the time she dies the witch will have undergone several deaths already.
He also had the brilliant idea of making reincarnation (usually as understood in Theosophy, not directly from Eastern religion) an integral part of Wicca, specifically that we will know those we love again.
I know this isn't quite what you were looking for but hope it helps as indicating another non-Christian view.
John

Pen Wilcock said...

John, this reminds me of something that was said in my family — I think it was at the death of my grandfather, who died around my age. I believe it was on the occasion of his funeral that the officiant said he had finished the work he came here to do. I also remember a preacher once saying, "Here's a way to tell if your mission is over — if you're alive, it's not."
I think the idea you express of the witch giving her power away to someone else resonates with that idea of finishing what one came here to do. And it reminds me of the biblical story of the death of Elijah. In case you don't know that narrative, Elijah was taken up to heaven in a fiery chariot, but his disciple Elisha asked that Elijah would let his cloak fall upon him (on Elisha) when he left. Elijah said if Elisha saw him go, then that could happen — and it did. Which is all about the sharing of sight and insight, a common vision, and a calling passed on.
We are born and we are reborn, and part of our emergence into life is understanding what we came here to do. To me, the giving away of the power is the pouring forth into the world of who we are.
So I guess part of our responsibility in learning how to die is allowing ourselves to become fully alive, and finishing the work to which we are called.
Thank you so much for adding your perspective here.

Suzan said...

I don't have an author or speaker to recommend. Like you I have witnessed death and I am not afraid of death and dying. I would suggest if you have special thoughts or wishes, write them down and tell someone where they paper is.

My father left us on Valentine's Day this year. After 20 plus years he was released from Alzheimer's and the pain from his polio as a child. The staff who looked after him were brilliant but my children found his death traumatic and want him back.

God bless.

Pen Wilcock said...

May your father's memory be blessed. It's not to much the end-of-life time I'm thinking of, which is well-documented I think, as the development of wise and skilful means in the increasing frailty of old age as one moves towards the end-of-life time. xx

Bethany said...

I have no idea what you've read already and am loath to mention these to someone with so much experience in this area. But in case one of these is just the sort of thing you're looking for and something you haven't already run across...
I LOVED Atul Gawande's "Being Mortal," though it's more about navigating the medical system toward a holistic end than the aging process that comes before, I think.
I've heard many good things about, but haven't yet read, Paul Kalanithi's book, "When Breath Becomes Air." Paul was a doctor who shared his thoughts about death as he faced into his own last days.
And I own, but haven't finished Stephen Jenkinson's "Die Wise." I think this last one may be the closest I know of to the sort of thing you're looking for. Early in my training for harp in hospice, I was able to attend a conference with him and I was grateful for his words which came from many years of work in the area as well as a lot of deep thinking on the subject.
Lastly, I'd like to recommend that YOU consider doing some writing on this topic. Maybe not a whole book (though I'd read it in a heartbeat) but posts or articles at least. I imagine that you might be looking for reading material about this because of how much thought you've already given to the topic, informed by all your experience accompanying others. And, after all, it's only the accompanists who can write these books, right? No one can come back from beyond to help guide us. But it's worth considering, as our thoughts about endings inform our days so profoundly.
I'm fascinated by this topic and wish, not for the first time, that we could sit together and have alternating conversation and silence around it. Thank you for prompting this dialogue.

Bean said...

Having watched my mother-in-law die of leukemia I learned that acceptance is a big part of leaving this life. Once all that could be done was done and it hadn't worked Sharon accepted her diagnosis of only months left to live with such grace and acceptance it was a beautiful example to all of us. Each time we saw Sharon, it was frequently those last months she was up, dressed, she favored a pale pink sweat shirt, her hair was very short after chemo, and she always was smiling, she never spoke of her illness, she wanted to know all about everything everyone was doing, :) When the end came she went peacefully with her family around her, a large family, at one point thirty plus of us stood around her bed praying the Lord's Prayer it was beautiful and I will never forget. Sharon was a woman of strong faith, she prayed, she loved the Lord, she was a good, strong woman. She accepted death, and taught us all how to die.
Another relative also died of cancer, it was awful, they just couldn't accept that this was the end, they raged against the illness, took their frustration out on their adult children, it was brutal and distressing to watch. I learned from this too, this is not how I want to go, leaving behind hurt children, her children really struggled through this. Not just that their mother was dying, but all the brutality of the anger battered them emotionally. This relative was never a church goer, I do believe they believed in God, but more in the magic genie sort of faith. I still think about this persons death and know that I would never put my spouse, children, grand children through that kind of emotional trauma. Acceptance is not giving up, it is simply being at peace with what is happening whether you like it or not.
And on a practical side, pre-paying for everything, making sure your wishes are known as to what you want in way of a service etc. are all great gifts to leave to your survivors. Again my two examples above, Sharon had everything sorted years before she even got sick. The other relative refused to acknowledge death and her adult children were left to sort things out, all struggle hugely financially, and could not pay for a funeral, thankfully a big family is a blessing and all of the family pitched in to take care of things. But again, yet more stress left for those poor kids to sort out.

My uptake, death comes to all of us, I feel at 54 if I was diagnosed with a terminal illness I would be sad, but my purpose in life by natures standards is done, I have reproduced and raised my offspring to adulthood, so by natures standard I am some what unnecessary.

Don't take that last paragraph as negative, I have given this some thought, I am sure we all do as we get older, and older :) and we see those ahead of us pass away, it is only natural to ponder on the end of life.

Peace be with you,

Bean

Pen Wilcock said...

Hi Bethany — thank you so much for those recommendations! The only one of them I'd come across was "When Breath Becomes Air", which we have on Kindle I think, but I have not yet read. I'll look them all up.

About me writing something, I'll come back to that in a future post, but in brief for the moment, I am not planning a book for two reasons. The first is that writing books takes so heavy a toll on family life and personal relationships that I am not planning to write any more. I have one last one signed up, which I proposed because it offers a theological approach I have not come across elsewhere that I think it's important to make and can be said in a short book. But unless something radical and unexpected changes, that'll be my last shot. The second reason is that I have found nutrition to have made a huge difference to my health and wellbeing as I grow older, and I have become disenchanted with mainstream medicine. I have been able to address everything from fibromyalgia to varicose veins to depression nutritionally, improving my health systemically holistically as I make the journey. I know that if I put that in a book I would be howled down by nay-sayers in five minutes, besides which I have no qualifications as any kind of medical practitioner, therapist or nutritionist. I'm just an ordinary person willing to give it a go. But that would mean I'd have to stay silent on what has for me been a cornerstone of learned wisdom, which would somewhat undermine the point of the book. And the relevant information is already published and easily available, though the mental health aspects are somewhat under-recorded, in my view.

However, as I am now into the last twenty years of my life, I would like to do some digging deep into the topic, so I expect this blog is the place where I'll be doing it.

Thank you so much for your kindness and encouragement. xx

Pen Wilcock said...

Hi Bean — thank you so much for such an interesting and thoughtful comment. I can see what an impact it must have made to have had the opportunity to observe two such very different journeys so closely and personally. It takes a wise person to learn from the lives of others in the way that you have.

I wanted to comment on something you say near the beginning, which hits the nail on the head for me:
"Once all that could be done was done and it hadn't worked Sharon accepted her diagnosis"

That right there is the area I'm wanting to explore. The thing is, I do want to know what's going on in my body as I age, but I feel deep reservations about getting onto the conveyor belt of mainstream medicine. With only few exceptions, my practise throughout life has been to manage my own health and treat my own illnesses — and I have been very content with the results. So I want to live, and then die, as far as possible without diagnoses. And the part I want to avoid is the "Once all that could be done was done" bit. I don't mind how short a time remains to me, I just don't want a lot of interference!

I have deep reservations about surgery involving anaesthesia, especially in older people (in whom it often triggers dementia, so I've read), and I have a powerful visceral objection to chemotherapy and a horror of radiotherapy. If I can get to my death bed still dodging all the burning, cutting and poisoning, that's what I want to do. In order to achieve this I am willing to accept responsibility for the considerable discipline required to maximise health and wellbeing as I age. I have been very interested in your own health journey, which I admire and in which I take delight. I am sure it has its spiritual and emotional and psychological benefits as well as the physical — I know it has, I can see it in your face.

I have already gone somewhat off-piste in these respects, having begun to turn down the increasing inflow of opportunities to vaccinate against flu and pneumonia and to create images of my various internal tissues. I know this will attract censure from a number of quarters, and I hate being told off. But I just have to walk the path I've chosen, which at present is firmly in the direction marked "Away"!

Anyway, more follows as the conversation unfolds in the months ahead — I will be so interested in your thoughtful input, because I respect your mind, your values and your faith.

Bean said...

I know of a person who had kidney cancer, the options for treatment were somewhat limited and the long term survival rates not real good. The person opted for no treatment, they were at peace with their decision but a fair number of his relatives, siblings mainly, just couldn't understand why he wouldn't fight it, and they had to battle their own anger at their sibling about his choice, (his life, his choice and he was at peace with it) and their sadness that they were losing a brother.
I have seen people go through the medical conveyor belt of treatment, each doctor promising some kind of hope, even if only a slim chance, and the patient having worse and worse quality of life from the side effects of treatment. I find it interesting that most doctors say they would not do a lot of the treatments for cancer because the side effects are worse than the actual illness and you may live a few months longer but with a much poorer quality of life.

I think at the end of the day it is a personal decision.

Peace be with you,

Bean

PS posting the vegan meatless loaf recipe LOL

Pen Wilcock said...

Yes. My previous husband had kidney cancer — alongside a hideous autoimmune condition. I got in touch with the hospice nurses who were old friends from when I worked as a chaplain there, and they talked me through exactly how I could expect it to progress. Something that was really interesting to me was that our best thing for zapping his pain (and you have to get on top of that with kidney cancer) was ordinary old paracetamol. It had a soothing, comforting quality that settled him down well. He only ever had to go on to the class A drugs when the breakthrough pain was occurring before he could safely have another paracetamol. So simple, so effective, and so cheap and easy to obtain.
Now I'm hurtling across to your blog for that recipe! Thank you!