I know only a few of you, so my brief bio is that I grew up over in Greenlane, I went to the local grammar school, joined the Somervell Youth Group in 1977, studied Medicine at Auckland, married Sharon in our Dunedin years, and moved to Lower Hutt, initially training in General Practice and then doing hospice work there, in the North Shore, Wellington, Hamilton, and now Middlemore Hospital.

Hospice work and Palliative care, is not all about death and dying, but this morning, I want to reflect on dying. Since the invention of tax accountants, the only certainty in life.

Dying is the root of so much fear and so much grief. And perhaps therefore, dying is at the heart of being human. The meaning of our life is inextricably linked with the fact of our mortality.

However I recognise, not everybody this morning is in a position to reflect on dying. If it is painful or unwelcome, by all means, feel free to leave, to take a break, to go somewhere else in body or in your mind, if you want to.

This is my plan: I will introduce a story from Stephen Jenkinson’s book Die Wise. He is a social worker, theologian, educator. Then after that story, I will talk about the dying room, a metaphorical place in the house that is our life, where we recognise & where we deal with our own mortality and dying. In the dying room, I want a brief foray into what, in my mind, a good death might be, Which leads into how we as a faith community help and hinder each other feel comfortable with that room. And finish with Stephen’s story again.

Now all this is as I experience it from working in hospices and more lately, hospital. So, personal, and pretty monocultural. It is aimed to stimulate some thought and discussion, nothing more.

So starting with Stephen Jenkinson, the Hospice Social Worker, as he was. He is an interesting character, Canadian, very connected with indigenous culture, who trained as a social worker, did a divinity degree at Harvard, worked for a hospice service ‘in the death trade’ as he calls it, for many years. Lately he has taken up an education, provocateur, spiritual guidance sort of role. One of his main beefs with his North American culture, which has relevance to our culture, is that we die ‘not dying’.

Dying, in this sense, is not ‘dying dying’ , the last hours or days of a person’s life. It is what we do from when we first recognise dying on our radar. When we recognise the possibility, the probability, the inevitability that our death is coming. It is our actions and thoughts, in the light of this knowledge, and in the experience of our bodies. And we generally don’t like to die, we don’t want to think about it, much less experience it. We want normality and the illusion of immortality, so hence we die ‘not dying’. That is Stephen’s complaint. That our struggle for normality and coping is not dying wise. It is unhelpful, unhealthy, spiritually dangerous.

He has this story of visiting a protestant minister and his wife at home. The minister was late 50’s. So young. He had a lung cancer. When Stephen reviews the notes before he visits, they give the impression of a patient doing okay, but then when he meets him, is taken aback with how sick the man is. The Reverend is gaunt, ashen, on oxygen, speaking a handful of words at a time, but not full sentences. When asked how things were, husband and wife offered up, delicately, their understanding that he was quite ill but things were going pretty well, better than expected, considering. His wife mentions that he is still working. He is still preaching every Sunday. He has not missed a week yet. How does his illness affect his preaching? Well, deliberately, it doesn’t. He preached without acknowledging his own situation, his own dying, as he thought this would be too hard for a congregation after their own difficult weeks, and too awkward in the face to face greetings after the sermon.

So this is an example of dying ‘not dying’.

Everybody knew (presumably) that the minister was terminally ill. They could see that, at some level. And everyone dies, right? But at least in the service, nobody was going there.

So where is this ‘there’? This place that you do not want to go? This is the ‘Dying Room’ bit.

Back in Wellington, as part of their 4th year training, we gave medical students the chance to visit one of the hospice patients at home, to meet them, and talk about stuff.

We prepared the students about what they might talk about. As part of this I introduced the House Model. It was a metaphor / model of a patient’s life seen as a house, with many rooms to represent the many parts of a patient’s life. With the advent of a terminal diagnosis in each of these rooms, things had changed and were changing. The students start in the Parlour, to establish a relationship, whakawhangatanga. And only then, they may be invited into other rooms of the patient’s life, and talk about what is happening in each room. These may be recognisable rooms, the kitchen, the bedroom, the loo, the family room. So for example in the kitchen, we talk about food, loss of appetite, nausea, intravenous hydration, but also how food is a symbol of love, a means of healing, a currency of caring. About the fights that happen when he won’t eat the food she’s made. In the bedroom we talk about sleep, but we also talk about intimacy. In the toilet we talk about bowels, but we also talk about dignity.

Some rooms are less readily identified, like the attic, the study, the garage, the basement, the sick bay, the chapel, the ball room, the media room. The bunker. The fire escape. Each of these rooms prompts discussion. All good stuff. And in the middle of the house, is the dying room. A room that always exists until someone opens the door.

And in there our mortality sits, waiting to meet us, waiting to help us, waiting to sort through stuff. To transition from being alive, to death. Our minister friend was aware that he was mortal, that he would die. But that was not the room he was inviting Stephen into, he would perhaps, invite him into the work room, or into the family room, which is important. But ultimately, it was Stephen’s job, his hope and his expectation to go into his Dying Room with him. Did the reverend invite his wife into his dying room? Did they talk about his fears, his hopes, his plans, made in knowledge of his dying. Or did he only go there by himself? Did he go in there with his old dog, talk about the circle of life? Did he talk with those who had gone before him – old friends, his parents or siblings, people who were waiting for him on the other side? Who knows? People do all these things. To never go in, to truly deny your mortality, in my experience happens very rarely, and is very problematic for everyone.

So you and I have this metaphorical dying room. What does it look like to us? What does it feel like? What furnishes our dying room? Options are Bible Class stories, horror movies, religious icons? Other people’s stories? Sermons and books? Is there deliberate design, or is it just random unedited chaos?

I would like the smell of cut grass, or mountain air. Other options are disinfectant, or sulphur and decay? Who knows? You find out when you open the door. If you don’t like what you see, and that is pretty common, can you fix it up?

You can and you should. It won’t happen overnight. Some people spend a life time, sorting it out.

In hospice or Aged Residential Care the spiritual carer is often the person tasked with doing some refurbishment with the dying person, perhaps chucking out some stuff that is not helpful, suggesting some ideas that may be. The goal is to make it, if not welcoming, at least okay. At least safe. In the community, we have each other, ministers. Pastoral care workers. Death doulars.

Let me step sideways, as part of the discussion in the dying room, and talk about a Good Death. Or a good enough death, people debate these things. There is quite a bit written about a good death. It tends to start with good symptom control, comfort, a place of your choosing, …..

For me, this is my observation, and my wish for a good death. A good death is when my body and my mind and my soul all agree that it is time to die. The physical body, the mental understanding of what is happening, and the spiritual understanding all come together and say, it is time, it is appropriate, it is safe to go.

Coming in as a close fourth is that family, the loved ones, agree that it is time to go. That is part of dying well, and brings the community in with work to do.

Does that ever happen? Sometimes. Not as much as we would want, and sometimes it can't happen. Can we help it happen? Yes, I think so.

Each aspect of this body / mind / soul trifecta deserves much discussion. And I know that for much of that, we do not have a choice in the hand that we are dwelt. For those with an advanced dementia, obviously the mind has lost what it needs to participate.

Let me just make a few points for the soul.

I mentioned in passing that one room I regularly discussed with the medical students was the Chapel. Some people have a literal chapel in their house, an altar, a meditation room. That place where we encounter the transcendent, where we experience awe, where we find and reflect on our place in Creation, in this universe. For some, their chapel will be less Chapel, and more garden, mountains, or ocean. Let’s not confine ourselves here. A good death, for me, is where the chapel and thedying room have no wall between them. Each informs the other.

Psalm 103: 1-18 was the reading today, and perhaps is up on the Dying Room wall, the knowledge that mortal lives are like grass, impermanent as flowers, the wind blows, and we are gone. Yet under this, the room is filled with people you love, past and present. It has the comfort of rituals, traditions.

Yet so many things get in the way.

Like the story of Tabitha, if you read it thinking it says dying is about hoping for a miracle. Which can be a spiritual way of dying ‘not dying’. As I read it, Tabitha is a story of ordinary dying, Her friends were going about their grief when Peter came. Talking of her legacy, gathering the community. A death had happened, this is what we do. No one of her crowd was asking for her return to life. I don’t think it teaches us to expect us to ‘not die’.

I am not banishing hope, of course. There must always be hope. Living without hope is like living in the bunker of your house.

Meantime there are more things the faith community, our theologians, & our pastoral workers, can consider and help with. A real shopping list.

We have to deal with justice and fairness, Why am I dying is a spiritual question? Why am I dying. Why now? It does not seem fair, or just. Even getting to three score and ten now seems like a poor deal. Where is the fairness when our children die? How far do we balance the hope that life is fair, and the experience that it is not fair? Is it enough to lay it down to divine plan?

Another issue we have to deal with safety. Whether heaven awaits, or whether oblivion awaits, is that okay? How do we deal with doubt? It puzzles the will, as Hamlet says.

We used to have rituals and practices that filled in some of these gaps. Not so much anymore. Families will sit vigil, for days, and then a week. What do we do over that time?

There are ethical issues which our soul would like to comment on, about what the sacredness of life is, what is dignity, what is appropriate treatment, should life be prolonged, can it be shortened. Too many questions. With very long answers.

We shall cut our losses and go back to where Stephen the Hospice Social Worker is sitting with the Reverend, and in the end, invites himself into the man’s dying room, and tries to put something of value in there. Let me read how he ends it:

“So I asked something more of him, (says Stephen) something that it seemed no one and nothing else had asked of him or had a right to ask of him. I said “Reverend, tell me this. This man you've been preaching about for 30 or 40 years: they say he knew when he was dying, as the story goes. Just like you. He had people looking to him for all kinds of guidance and good example, just as you do. He could see his death coming from a good ways off, they say, as you can. As his life was coming down the road toward him, when it was his turn to die, did he tell anybody, do you remember?”

Let us pause and feel the awkward silence. And then Stephen goes on.

“It seems to me that he told everyone around him that he was going to die….. The Last Supper….. It couldn't have been easy, everybody gathered there to a feast and him putting a real damper on the proceedings by talking about dying. But he said that he was feeding people something by telling them about his death. He fed everyone by telling him how it was with him. How could telling something which makes so much heartache and awkwardness feed the heartbroken and awkward people? Well, the news was the food. And he said it “Here, eat this. Eat the end of my days. Drink in my dying”.

And so the visit ends and Stephen doesn’t see him again. He is a braver practitioner than I am. But I see his point. There is this central drama in the gospels, at the Last Supper, pointing to the death of Jesus, the meaning and remembrance of which lasts the millennia. It happens when Jesus opens the door to his dying room, and invites his disciples in to face up to his death. And find the meaning, and the future, forged there.

Stephen finishes in his book. “ I don't know that hearing that old familiar story in that kind of way did much in the way of helping the minister. But I don't know that it didn't either…. What I am fairly sure of is that him dying in front of his parishioners without him saying a word about it had probably gone a long way towards making him look heroic, stoic, admirable. In a “long and courageous battle”. That's what dying not dying looks like, though: enviable, singular, sane. I still feel badly for him when I remember that meeting, how narrow his choices really were. All those people gathered every Sunday for the greatest transubstantiation, trying to make do on the dry wafer and watery wine of a long and courageous battle.

So that is a story.

These things may be brought into your dying room. The psalms that recognise our glory and our dust. The news that dying is not the end of the world, the end of us. That there will always be stories of the unexpected and the miraculous, but they are not ours to control. Rather it is our human task to deal with our dying. To have the conversations, the community. We cannot be distracted by tales of miracles, of medicine, of other people’s stories. If we choose to spend our time watching and wishing for other people’s stories, we will miss our own story.

Know that the dying room is part of your house, and the houses of those that you love. Know that it is possible to be comfortable there. Know that our faith allows this, perhaps expects this, and not through the promise of miracles, but more in the practice of community and conversation and participation and prayer.

I am finishing with the offering of a song to listen to. Some of you know Malcolm Gordon, the song arose from his being at wild Southern beach one day, and watching the Thistledown being blown out to see. A Psalmist experience of the glory and transience of life. Sad, and uplifting.

Thistledown floats across the river mouth

Sweeping up the dunes, Out across the sea

Floating down like fairies from my Father’s house

Dancing on the breeze, hovering o’er the deep

And how I called to them,

“Please don’t go. There’s no life for you, out on the ocean’s roar”

I heard them sing

“We ride the westing wind, Do not grieve for us, there is grief enough”

On they fly ‘til lost behind the breaker’s spray

Such a fragile life, on a fearsome sea

What they might have been is just a memory

Still the gift they gave I carry with me.

And how I called to them,

“Please don’t go, There’s no life for you, on the ocean roar”

I heard them sing,

“We ride the westing wind, So do not grieve for us, there is grief enough”

In silent majesty they parade on by

Drifting fearlessly, trusting to the sea

Through the autumn haze I see the river wide

Come out the valley, life rushing at me.And how I called to them

“Please don’t go. There’s no life for you, upon the ocean roar”

I heard them sing

“We ride the westing wind, so do not grieve for us, there is grief enough

And if this be our end, then, farewell dear friend.”

Malcolm Gordon 2017

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References:

Die Wise: A Manifesto for Sanity and Soul. By Stephen Jenkinson, published by North Atlantic Books 2015

Thistledown, written by Malcolm Gordon and recorded by Malcom Gordon and the Dirty Rascals, released 2017.

Griefwalker. A recommended feature length film by the National Film Board of Canada, directed by Tim Willson. It features Stephen Jenkinson discussing and doing his work, and the cultural and spiritual roots that shape his ideas. Available on-line. Orphanwisdom.com

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