A Sacred Journey
Updated 30.6.23
This post is a long read. It’s simply the posts I’ve been sharing with friends, in chronological order of my journey with my dear father Richard Darlington as he slowly and gently (and still ongoing) moves towards death. He gives his full authourisation for me sharing this journey, as it may be helpful to others. Its been a huge privilege to share this journey with him and it is helping me so much to write about it. With love, Susannah
The gateway approaches
June 7th
I am sitting writing this in my father’s little house, next to ours. He has finally reached that gateway, and he is ready to go. There is peace. He is resting and still lovingly communicative when he is awake.
The hospice nurse is on her way. I am grateful for this as I know the quality of the hospice system from how they accompanied my mother (and us) in her dying.
I am riding waves of tears and peace, laughter, love, and gratitude. We went to the doctor on Monday. That was, I think, his last journey into the world, the last time he put on one of his well-loved smart shirts and got awkwardly into the car.
Last Saturday (3rd June) he had written his request to the doctors for help to go – no heroics, but simply their expertise to have the most peaceful passage possible. And now we have a little pause, it seems, once the practicals are all worked out (not quite done yet, but en-route).
10 days ago, with a dear friend, we watched the little film I made In February with Dad as an “appreciative echo” of his life. At the end, after some deep reflection about what she had felt as she watched it, she asked him: “Are you complete?”
Without a hesitation, almost as if he had been waiting for this question, he said “Yes, I’m ready to go. I’ve finished. And I’m so glad we made that film as I couldn’t do it now”.
Since then things have moved very fast, from yesterday being able to walk with his wheels into the doctor’s surgery, to today, not being able to stand without a lot of help.
A bit later: We’ve just had our first hospice visit (I’m so grateful for this amazing service) and it looks like the trajectory may be steep. And of course, this is a big unknown.
As my father, who has offered me and through me, us, so much about the power of “alongsideness” I’m doing my best to be alongside him. And so grateful for how Ya’Acov is and has been supporting my capacity to have this the to be here with him. So precious, wonderful, difficult and everything. Right now I am simply so deeply grateful and seeing everything from the perspective of death, how infinitely precious each moment is.
My father has recovered from nearly dying so many times – and now that it really seems to be crunch time, its hard, in some ways to recognise that we are here at the doorway to the mystery. My heart know though.
As Dad lay peacefully resting this morning, I held his hand, and he said “How lovely, I can relax, there’s nothing to worry about – oh except dying”. We had such a good laugh.
I am sharing this with you so that you know what’s happening and to include you in where my journey. I may well not be answering emails or others modes of communication for a while, but will post here something of the journey,
With love and blessings to wherever you are in your journey,
Susannah
The mystery of synchronicity
June 13th
Several months ago we decided on the next themes for the Movement Medicine Study Hub. And through a series of juggling things around, it was decided that I would teach this month’s class on “Sadness, Grief and Love” ie The Waters of the Heart.
As I carefully made the 15 minute Keynote video about various aspects of befriending the dance of grief as an inevitable part of life which is intimately connected with love, little did I know that I was preparing my own being for what was coming. How does this happen? I have no idea, but I love the feeling of congruence between the different parts of my life.
Last Monday, as the Keynote went live, I took my father for what looks like having been the last journey into the world in the form of a human, to go and see his very good GP. Since then, I have been moving between being a calm, competent person doing what is needed and a wild waterfall of tears as we recognise that my father is entering the last period of his life. His next journey into the world (probably) will be his lifting of wings into the big expansion to be part of all of it. I see probably because, as one of my cousins says, he has been a “medical marvel” may times in his life, and you never know with my Dad.
However, since then, he has gone into palliative care at home next door to us (we are super lucky with our local hospice having a strong home hospice service).
During the Live Class my computer died (and then was reborn ) which meant that we danced to the song of our breath for a while and then, when the music came in, what utterly beautiful nectar. This is what I’m experiencing right now, how the reality of mortality and loss brings the potency of each living moment into such precision and awareness. How silence gives such a ground to music. How music gives such a figure to silence. How death brings such a quality of revelation to life. How loss can bring such love into the foreground.
I came out of the Live Class to greet Dad and the two friends who were with Dad whilst I was dancing with the Hub. They were as smiley as I felt.
I’m very grateful for the web of life and love which I feel held in right now, and thank you to all of you who are part of this generous weave. And, I’d like to report from this particular place, god, it’s really, really good to DANCE
Love to each one of you,
Susannah Darling Khan
Dad and the Mountain
June 16th
Heh all,
Thursday – All is quiet and peaceful. I am sitting in the soft rays of the evening sun outside the open doors of Dad’s Den. Right now he is resting, accompanied by some Beethoven. He’s finding doing anything very exhausting. But laughing and good humoured, loving and sanguine.
We (Y and I) went for a walk yesterday up onto the moors to the place we call the “tomb of the old king” whilst Angella (Y’s mother) was here with Dad. We feel a very peaceful, benevolent, strong grandfather energy up there, and have often felt supported by the ‘old king’ during these last years.
At the same time as we were up there, it turns out that Dad was imagining that he was with us, seeing what we were seeing, being in that expanse of space – the moorland grass, the heather, the rocks, the sheep. He and Elizabeth (his wife, my Mum) walked a lot in similar places – the Peak District, the Lakes and Snowdonia and he knows that vibe well.
When we were up there, tuned into this magnificent land and felt the benevolent old king energy holding us all in this transition and welcoming Dad as much as he wants, when the time is right for the great journey.
When we got back home Dad told me that he’d realised that “up the mountain” was going to be a really good place for his spirit to go once he is done. That it fitted him.
The resonance of our experiences touched us all.
At the same time Richard is surprised to find himself still here “in the valley, in my body” and wanting to let his body drop, like the ripe cucumber from the vine in the mantra Shiuli gave him.
In Dad’s own words, “I’m fading”. And its clear, much less energy for speaking and sharing. Breathing is harder.
Friday morning – last night a Marie Curie nurse sat with Dad through the night – what a blessing – and this morning his “wanting to go” has got to another level. “I love you all and now I want to go. I’m not afraid. After I’ve died I’ll either be super conscious or not at all, and then I won’t be here to know about it. Either is fine with me.”
One of the things that is happening for me is a re-connection with some of my cousins and the god-children of my parents. One of them, Nell Stanislas, who I started connecting with through my Amazon Blogs earlier in the year, turns out to be a nurse who does lots of palliative care work has been telling me how rare it is to be part of an extended family where no-one is turning away (averting their eyes) from the reality of an approaching death. And what a blessing it is that we can accompany each other as well as Richard in this way. She’s also talked about how lonely it is for the dying person if the people around them can’t bear it and “avert their eyes from the reality.”
I feel so grateful that this is not an issue in either of our (my or Ya’Acov’s) families. And it is Dad who is leading this by his own conscious way of being with it. Exactly as my Mum said when it was her time “I want to live, but not like this. And if this is the life that is available to me now, then I want to go”. When Dad told me that the doctors in the hospice where she died were saying that they thought she was dying, she said: “thank god”. There comes a time when you’ve had enough and it is time to go and benevolent death seems a welcoming presence.
Liz Gleeson who runs “Shapes of Grief” shared this podcast with me which I found truly helpful and important: https://podcasts.apple.com/ie/podcast/shapes-of-grief/id1450116449?i=1000437505135
Our love to all of you and gratitude for those of you who are holding an awareness of him and us in your loving hearts, thank you,
Susannah Darling Khan
Cancelling a celebration is forbidden!
Tuesday 20th
Dear all,
Though Dad’s hands are looking revived, well and warm, it looks like another step is being taken and the district nurse has said he is now “actively dying”. All he’s wanting is peace, stillness, quiet company and to not be disturbed to sit up and swallow anything. So the district nurse has organised a “driver” to offer him a very low level of background pain relief, analogous in amount to what he has been taking by mouth.
Their commitment to honouring the patient’s wishes as they evolve and to maintain consciousness and keep the person comfortable, as well as their emotional care and awareness of us is outstanding. I wish everyone could have this level of support in their dying.
Wednesday 21st – solstice (images of sunset and sunrise from “up the mountain” – sunset from solstice a few years ago, and sunrise from Thea Henderson, our dear friend and neighbour who is being such a support on this journey, from this morning).
No Marie Curie nurse last night so I slept there in Dad’s Den. I was so tired. But it was very peaceful. Occasionally me lying awake listening to Dad’s breathing rhythm and the pauses. The hospice carers (last night) said there are more signs of the approaching moment.
This morning, just before dear Lil came in to take over the “sitting with” Dad “Strange: two directions”… and then asked for ice cream, but only one small spoonful. Why not enjoy the sensual pleasure of life whilst you still can?
And it definitely feels like he is moving closer to the gateway. Preparing to let go. And, as we know so well, there is a great mystery to timing.
I’ll probably go quiet now…Will share an update in a few days…
Thank you for your gentle awareness,
Love to all,
Susannah Darling Khan
Dancing with death
23rd June
Hi all!
So yesterday it seemed that my father was about to slip away.
Today, guess what? The picture is different- though tired and resting lots, still very there (here) and more vigorous in his diluted pineapple juice habit – which he loves. Such a complex of inner emotions for me.
Today I recognised that I simply cannot sustain the level of emotional intensity I’ve been in, so have stepped back a little as I’ve recognised that this could still be many more weeks. And of course no-one knows.
Richard is peaceful, still receiving messages from old freinds and colleagues though not able to give more than a few words response, but clearly “getting” what is said.
In my reflections on my own Movement Medicine Study Hub’s lesson this month (serendipitously on Grief, love and letting go) it’s SO easy to forget to dance. Even for me. And by “dance” I don’t mean pushing away the feelings and dancing “on top of them” – but allowing them all, and giving them to the movement of the body to be metabolised, honoured, transformed and let go into and though, in the dance.
When I taught the Live Class on the Hub, which was within (one of the many) very emotional moments for me, I experienced the way the dance gave me so much more ground, more “bank” in proportion to the sweeping waters of my emotional river.
So, it’s a good timing for me personally, and I hope you too, that we have the Solstice Tribal Heart ceremony this Friday (23 June). Dad has one his trusted friend and carer with him next door, and I am going to let go and dance for and with it all, and hopefully, with you!
My mother in law, Angella, told me recently that there is a Jewish law which forbids the cancelling of celebrations because someone is dying, or has died. Its regarded as a sacred duty to continue to celebrate life in the presence of death. And I know my Dad wants that for us too.
So do come and join us in this dancing celebration of the solstice, the turning of the year, and of the cycle of all things. No doubt it will be tender, no doubt it will be wild, no doubt it will remind us to honour what we love now, whilst we still have breath to do so, and no doubt we will DANCE!
Thanks for sharing this moment with me,
with love,
Susannah
Ready to die?
24th June
In terms of my father and his journey I’ve been thinking over this thing about being ‘ready to die’.
Obviously, I don’t have any answers, but these are the thoughts and experiences I’m gathering to try and make sense of what is happening.
9 years ago, my mother Elizabeth Darlington was dying in a hospice in Oldham (northern England) attended by Richard (her husband) myself (her daughter) Ya’Acov (her son in law) and Reuben (our son and her grandson). Her passage felt very different to Dad’s (so far) but something that was similar is that they both had/have deep clarity with being able to say, and to mean: “I’m ready to go” “I’m letting go” but found/find themselves still to be here.
As my Mum said; “We don’t get to practice dying – how do you do it? How do you let go of life?”
When my Mum talked about this with the hospice nurse, what she said in response has always stayed with me: “Dying is a natural process, and it will happen. You don’t have to make it happen. And its complex. There are so many parts of the body, the brain and the psyche that have to let go. And that takes its own time. You can relax. Just let it happen in its own good time”.
This really helped me. For both my Mum and Dad being change makers and “doers” used to making stuff happen, it was/is a radical proposition. Oh, it happens by itself…. Oh….! Of course you can make it happen (stopping eating and drinking) but that’s not been a path either of them have chosen. Though Dad has wondered about it.
Later on in the process the senior hospice doctor gathered us all around Mum’s bed. She was still breathing, but not responding in anyway that we could see. He told us that he was almost certain that she was conscious and could hear everything that was said. He said that what he was about to say was mostly for Elizabeth but also for the rest of us, thereby reminding us that hearing is often the last sense to go and that what we say and how we say it matters for the dying person. Both what we say to them and to each other.
This is what he said; “Hello Elizabeth. I want you and all your family to know that in the hospice we do not try to slow death down. Nor do we try and hurry it up. We abide by nature’s timing.”
Those words were an enormous comfort to me. My mother was not being hurried, nor slowed, in her dance with death. It reminds me of the most common words I use when teaching movement medicine: “no need to push, no need to hold back”.
I feel this too with Dad. Here we are in the mystery of timing. Doing our inner work to be patient and flexible and responsive within the unknown.
I remember getting deeply distressed one night in the hospice with Mum, when I realised how horribly guilty I felt about feeling something like: “I don’t want you to die, Mum. But if you are dying, please get on with it, because I cannot bear this much longer”. I went to find the nurse in charge to ask for some guidance with this and ended up sobbing my heart out in her warm arms.
She told me that this is a very normal feeling for relatives, and reflected back to me that it simply IS hard – the real not knowing of the measure of the thing. Somehow being told that this feeling is very normal took the sting out of it.
Is this a 100m sprint or a marathon? You pace yourself very differently according to that knowledge. And yet here there is no map. there is no “course length” and not because anyone is withholding information (I have to remind myself of this) but because they genuinely do not know. As one of the wonderful local experienced District Nurses said to me the other day: “Every death is different. And I’ve seen hundreds of them. Every death is unique. There is nothing we can say re timing that we can be sure will hold any water”
Dad said the other day that he had recognised that; ‘When I go it is not up to me’. And we are doing our best to keep pace with him and keep pace with ourselves in the mystery of the timing. To look after ourselves and each other so we are OK. To relish all that can be relished. To ask for and receive support. To live within the moment and to enjoy the many small, sweet completions, sharings, laughs and tears, understandings and misunderstandings and rest in what is. One of my parent’s favourite sayings (that they said came from me but I think I got it from them and I’m sure its embedded in many teachings) is “being with what is”. That’s the task.
Right now Dad is sleeping in clean sheets having had a wash with the hospice nurses/angels. Ya’Acov is reading in the hammock. I am sitting looking over the hay meadow seeing the grasses moving in the wind. Right now, there is peace. I hope there is where you are too,
With love,
Susannah Darling Khan
27 June
Abiding in Gentleness and the Long Dance approaches
Today still having in, incredibly peaceful, warm, very conscious, very slight movements of the face and head and fingers to communicate. A few words every now and again. Holding hands, singing a little for him, very, very gentle. We spoke yesterday about “yielding” and that being the active element of dying, maybe, to yield. We had some lovely out-sighing breaths after that.
I remember when he was in intensive care in Bristol (one of his many near death moments) and he told me that the quality he appreciated most in the nurses was gentleness. That has helped me so much to value this deep and abiding need of human animals for gentleness.
As the Long Dance approaches, I am profoundly grateful that some time ago I met Claire (of Hilly fields) in the Hairy Barista cafe in Totnes, and as a result of that meeting, so much unfurled which means that the Long Dance is now 12 minutes drive away and I can dance back and forward between these ceremonies and be both there and here with Dad, if indeed he still is with us by then. our dear friend and neighbour (Thea Henderson) who Dad (and we all) loves and trusts so deeply will be with him and holding the fort here. Thank you Thea! I was incredibly relieved, when, a couple of weeks ago, I realised that this would be possible if necessary.
I and he have been so glad we made the film about his life and work which we did in February, as this has brought a real sense of completeness of understanding and sharing the meaning of the thread of his own life. Thank you Emilio Mula!
29th June
Yesterday Thea was here for a long spell and Ya’Acov and I had a deep and important time together, went for a walk, tuned in with the land and each other. Laughed a lot. Cried a bit. Re-found each other. So important.
This morning Dad having tea and tranquil… As we come up to the Long Dance I’m recognising that I’m going to be in two long dances… and this really could be a long long dance with Dad.
I’m so relieved that Thea will be here, holding the whole thing and I’ll be free to move back and forward’s between the ceremony of the Long Dance and the ceremony of the long dance of Dad’s peaceful dying, being fully part of the Long Dance at Hillyfield and at the same time able to visit with Dad, replenish the roses for the Long Dance altars and pray together with our community for life in earth, ourselves, each other and the planet.
Feels healthy, sane and real. I feel so much deep gratitude to everyone who is making this possible, and that I don’t have to make an agonising either/or choice…
Susannah Darling Khan
Little big things
30.6.23
Little big things
30.6.23
In a world shrunk to a hospital bed in his little house, there are these little big things: (what angle to be at) and a view, tea (Redbush or English breakfast, how hot, how much milk) water (how given) medications (if) whether the door to the outside is open or closed, how snuggly tucked in he is.
I (and all his carers and the amazing hospice workers) try to make sure that his choice and sovereignty are respected and yet sometimes it’s not easy. I found myself pondering this this morning as we wrestled over his cup of tea; him wanting to hold his own cup of tea himself, and me wanting to make sure that the straw was angled correctly so that the end was actually in the tea, and simultaneously to make sure the tea did not end up all over his bed. In that momentary tussle, resolved as I explained why I was doing it that way, I felt his strength of arm and hand and, even more, his will to be able to operate something autonomously. I find that so beautiful and I understand. And I felt the stirring of my own impatience mixed with that understanding.
Yesterday the District Nurse told me that I was doing the right thing to go to the Long Dance, and how great it was that I could come back nearly every day, knowing Dad is in Thea’s good hands and that I can have some days of tending the rest of my life.
I’ve been aware of maybe a particularly daughterly desire to do this ‘right’ to do this perfectly, to give Dad the best ending I possibly can. And I recognise that, in this moment, it being 4 weeks since he said to the doctor “I’m done, please help me die. I know you can’t kill me, but please help me go as soon as possible”. I myself need some respite – I need the rest of may life again. It’s the emotional roller coaster of not knowing if he’s going to ‘pop his clogs’ in an hour or a month that is so exhausting, as well as all the practicals and the way my own life has, of course, needed to be centred round this journey.
I feel so blessed that this can happen at home, in Dad’s Den, next to our house and that the palliative care system where we live is in such good order and he and we can be supported as we are.
Back to the little big things of choice… I have found that Dad almost always answers if we ask in a way that he can answer ‘yes’ or ‘no’ with a slight shake or nod of his head. Speaking is an effort, being understood more so. So “would you like the door open or closed?” feels like giving more choice but is not helpful as its harder to answer. “Door open?” he can answer simply. “Yes” was his answer this morning. His “yes” and “no” are still crystal clear. Yeah!
The other key I’ve found is that when I ask a question, the answer can take a while. But just because he hasn’t answered immediately doesn’t mean he isn’t going to and isn’t thinking about it. This reminds me of working with my horses, and how often I wouldn’t even have known that they were going to answer my question if I hadn’t waited for it. And of course, how often I must have missed the answer through my own impatience or simple operating at a different speed and not managing to slow down to the speed required for effective communication.
Yesterday I hung out with the horses for a bit, and Kailash, my super sensitive Exmoor pony seemed to have forgotten that he is/was shy about being touched. I think that must be a reflection of the stillness in my belly which being with Dad in this dying process has brought me. Kailash’s mirror I take seriously. So maybe I need to reframe that, not that Kailash is shy about being touched, but that I have previously found it difficult to slow my system and soften my belly to a level that meets him where he is and helps him feel safe with me.
Huge gratitude to Ya’Acov and everyone involved and to Dad for being so warmly and clearly himself, even as he struggles with wanting to be gone and still being there.
I wrote this on a visit to town, which ended with buying Dad’s favourite ice cream and a new beaker which might be easier to drink from. And then on the way home Ya’Acov called to say that Dad had been more restless and had said that “he felt his time was coming” and that the District Nurse was on her way to give him some more pain relief. Ya’Acov had given him a moustache and beard trim and he had washed his own face and head with a warm flannel.
We had a very loving hand holding together and some sweet deep words before the District Nurse came and Richard has asked her for some more help with feeling restless. She obliged, and so we go on. Edging closer now, if feels.
Love to all, especially those labouring in similar situations, many of which I know are far, far harder than the one I find myself in,
Susannah
For the long read of all these posts (complied) about my journey over the last months with my Dad, see complied see: https://www.schoolofmovementmedicine.com/a-sacred-journey/
Thanks to everyone who is aware of this journey and sending love, and mine reaches out with wishes that all who are dying or who are with those who are dying can have the care and support they need for the most peaceful transition possible.
Susannah DK