what does dying feel like?

What does dying feel like? (4)

2 June 2009

Charles

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In late December 2007 blogger Carla Zilbersmith, actor, singer, director, was diagnosed with ALS, a fatal motor neurone disease. Here’s how she greeted the diagnosis:

Don’t get me wrong. I think it’s bullshit that I have to go this way. I don’t like it one bit. But that’s the hand I’ve been dealt and all I can do is feverishly, fervently and with great intention live the rest of my life to the best of my ability. I will not become a tireless crusader for a cure for ALS, I will not fight until the bitter end or be anyone’s poster-middle-aged-woman – rather I will do what we were all meant to do – be with people I love doing things that make me happy, trying to make the world a little brighter when I can and giving myself a break when I can’t.

The disease has progressed. Here’s what she said a few days ago:

Dear Friends,

I can’t sing. My speech isn’t clear enough to do any kind of reliable performing. I can’t walk across the room or do a Rockette dance kick and my “jazz hands” are a disgrace to performers everywhere. I used to be a performer and now it taxes me to sit in the audience for a whole show. It’s hard as hell to write even this much.

Here is how you can help: Open your arms wide and breathe in the beautiful fucking miracle of your brief existence here alongside the hummingbirds, the butterflies and Johnny Depp. Let your life be the raucous party it wants to be and don’t worry about god calling the cops. I still refuse to believe any god worth a damn is a buzz kill. Stand on your fabulous legs and give your ass a sassy wiggle. Dance, sing, laugh and make-out frequently.

Last Sunday she posted a song she has written “to address the need for an ALS song that was neither uplifting nor encouraging”. I’ve copied the words as best I could:

So this is what it’s like

Just me at the piano

In the middle of the night

So this is what it’s like

Trying to write a happy ending

While I’m waiting for the light

It’s 4am, so quiet

I can hear the blood pulse through my veins

And the sound of distant trains

Calling soft and low

So this is what it’s like

Thought you should know

So this is my goodbye

(???) my big red nose

But I don’t cry

So this is my goodbye

Watching everything I have

Just slip away before my eyes

And you know, life can be so beautiful

Sometimes I have to turn my head

Think of something else instead

Cos I don’t wanna go

So this is my goodbye

Thought you should know

So this is my goodbye

Thought you should know

Tonight I don’t wanna sing a stirring song

With a gospel chorus

And a melody that makes you sing along

And I won’t shine a light

Or offer inspiration

Or spread my arms in jubilation

Once my soul is bare

Tonight I’m all alone and I’m just scared

The things that I can’t do

Like watch my son grow up

Or just spend more time with you

The things that I can’t do

Take the pieces of my broken heart

And mend them with some glue

And I’m scared to sing this

Cos it sounds like such self pity

But let’s face it, this is shitty

So it goes

The things that I can’t do

Thought you should know

The things that I can’t do

Thought you should know

And I don’t wanna sing a stirring song

With a gospel chorus

And a melody that makes you sing along

And I won’t shine a light

And I won’t offer inspiration

Or spread my arms in jubilation

Once my soul is bare

Tonight I’m all alone

And I’m just scared

And I don’t wanna sing a stirring song

With a gospel chorus

And a melody that makes you sing along

And I will shine a light

And I will offer inspiration

Or spread my arms in jubilation

Once my soul is bare

Tonight I’m all alone

And I’m just scared

You can find Carla’s wonderful blog here. Thank you, Pam Vetter, for pointing me to it. I hope I have not breached blogger etiquette with all this copying and pasting, all done from the best of motives.

Making some sort of sense of it all

2 April 2009

Charles

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Categories: what does dying feel like?

Your life experience is unique to you. What you’ve done in your life, what’s happened to you and the sense you’ve made of it all amount to a precious and extraordinary story. Even if you don’t feel the need to write a whole book about it, you almost certainly have a strong desire to pass on to others something of what you have learned and come to understand about the world you live in.

You could tell your story in words, written or spoken. Or you could use paint. Or photography or video. You can communicate your life story in all sorts of ways, but it can be a difficult thing to give shape and meaning to experiences which blend events with emotions. You know you’ve got it in you – you can feel it there. But how do you get it out?

I was musing on all this as I tidied up my chapter on planning your own death and funeral, which my brilliant man at Carronmedia will be posting any day. Having said which, let’s take some time out for a plug. As a copywriter I’ve worked with some massively self-overrated technotossers through the years. There’s one around every corner. Harry at Carronmedia is different. He listens, he intuits, he keeps it simple, he doesn’t show off. He’s different and he’s rare. He’s the best and I love him.

Where were we? Oh, yes, life stories. There’s a charity, Rosetta Life, which funds artists to work with the dying and help them to express, in all media, what it is that they want to say. It’s worth your while spending some time at their website, looking at the work in their gallery and also in their online exhibition, which you can get to from the Rosetta Life tab. Here you can see work by people who, before they go, want to try to make some sort of sense of their life experience and communicate it.

It’s the sort of thing anyone making preparations for their death might want to do. If that’s you, there’s inspiration here. It will also give you an insight into what dying feels like and what still seems important when night is falling fast.

Especially inspiring, I think, is the work that Billy Bragg, funded by Rosetta, did with his ‘Friday girls’ at the Trimar Hospice in Weymouth, Dorset. Read about it here.

One of these ‘Friday girls’ was Maxine Edgington (above). This is what she said on the Jeremy Vine Show about how she felt when she was told her cancer was terminal:

I just realised that dying was not actually about me, it was about those around me; it was about their feelings, it was about their comfort, it was about their coping, their knowing that I loved them, and it was leaving nothing unsaid.

That’s what her lyric, dedicated to her daughter Jessica (below with her Mum), is all about. Here are the words:

We Laughed

Remember swimming with the dolphin off Portland Bill
You when Buster was a puppy – I can see it still
We laughed, we laughed

We went girl racing in my brand new car
Watched soppy girly movies at the cinema
We laughed, we laughed
And we laughed
Though the hardest part of living
Is giving up what has been given
And you know no-one could love you more
Whatever the future has in store
I want you to remember that we laughed

When I dance to modern music you split your sides
Your ballet dancing medal filled me with pride
We laughed, we laughed
We were happier together than with our friends
We never believed that these days would end
We laughed, we laughed
We laughed
Though the hardest part of living
Is giving up what has been given
We laughed
And you know no-one could love you more
Whatever the future has in store
I want you to remember that we laughed

You always want to borrow my shoes
You nicked my make-up – it looked so good on you
We laughed, we laughed
And when I see how beautiful you are
I’m thrilled you turned out such a star
We laughed, we laughed
And we laughed
Though the hardest part of living
Is giving up what has been given
And you know no-one could love you more
Whatever the future has in store
I want you to remember that we laughed

Some things don’t turn out as planned
I give you to our father’s hand
I want you to remember that we laughed

And here’s the song

What does dying feel like? 3

30 September 2008

Charles

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Categories: what does dying feel like?

In general it’s irresponsible, contemptible, to adopt the role of helpless bystander. We don’t like helpless bystanders. Their body language is all wrong, so are their faces.

Sometimes, though, you’ve just got to be one. When the plumber calls I serenade him with cups of coffee and ingratiating solicitude, then vamoose, trusting and helpless. What more can I do?

Expertise tends to be exclusive. Helping hands are clumsy hands. Leaving it all to the expert is not always the same thing as abdication.

There’s a rule of thumb here. Where inanimate objects are concerned, helpless bystanding is cool. Let the experts get on with it. You don’t need to be there for your toilet when it discovers it’s got to have a new flush mechanism. You don’t need to explore with it how it feels about that.

Animate or recently-animate creatures are different. We wouldn’t drop Nan off at A & E and say, “Call us when she’s fixed.” She needs us. We need, too: we need to do what we can for her. We can’t do anything medical, but we can do lots emotionally and spiritually.

The well and the sick and the dying and the dead need us. When they fall into the hands of experts, the body mechanics, we can find ourselves relegated to the role of helpless bystanders, powerless petitioners for information. Expertise bigs itself up by doing this to us.

There’s a lot of it about. We need to reclaim our complementary role; re-empower ourselves.

Just published is Gentle Dying by Felicity Warner, a book which tells us exactly how we can do that with the dying.

She talks about the loneliness of dying people, disconnected from their family and friends by their lack of engagement, which manifests as denial. She talks about “switching the focus from trying to make them [the dying] better to making them feel comfortable and safe”, and the undesirability of “the heavy-handed use of drugs” which “may mask the dying experience”.

Once, communities knew how to help people die. As dying became medicalised, communities lost that knowledge. Ms Warner wants, in this book, to return this knowledge to the community and create a modern paradigm.

There is a new-ageiness about this book which is likely to deter a good many potential readers. There’s a lot about essential oils and crystals. As we lie dying, Ms Warner tells us, we are likely to feel “a chill spreading up through the chakras”. No. Only those who are in touch with their chakras. What % of the population are they?

My recommendation: suspend your scepticism, if any. In so many ways this is an excellent book. Ms Warner has worked with the dying. She offers much very sound practical advice about preparing ourselves for our own deaths, and for helping others to die a death which is “Beautiful, dignified and inspiring.” Her “Ten very simple tips if you are sitting with anyone who is dying”, for example, are utterly down to earth.

Ms Warner heads up the Hospice of the Heart, where she teaches healthcare professionals and carers her gentle dying method. She also trains “midwives to the dying” – people who work alongside the body mechanics on the unquestionably far more important areas of the patient’s emotional and spiritual needs. It’s good to see. This blog extends its best wishes and its admiration.

It’s an interesting irony that, as our own Natural Death Centre lies dying, the natural death movement in the US, inspired by the NDC, has already taken Ms Warner’s pioneering work further and joined up death midwifery to home funerals. If you’re interested, check out the work of Jerri Lyons and Beth Knox, and Jennifer Bingham and Donna Larsen. There are others.

It’s women who are leading the way – of course. And, yes, there’s a danger it’s all getting too feminised and exclusive of blokey men. If this work is to prevail, each needs to move closer to the other.

What does dying feel like? 2

15 September 2008

Charles

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Categories: dying, what does dying feel like?

No one writes about death and funerals with greater wisdom, wit or feel for words than the poet-undertaker Thomas Lynch.

Is that point of view disputable? I think not. But go on, dispute it all the same. Where healthy debate is concerned, there is harmony only in discord.

Following on from my last post, here’s, if you don’t know it, Tom’s poem In Paradisum. I hope he won’t be copyright-sensitive if I quote it in full. It’s in his collection Grimalkin and Other Poems.

It makes me wonder if there are any funeral workers out there who have had similar thoughts — or even supernatural experiences?

In Paradisum

Sometimes I look into the eyes of corpses.

They are like mirrors broken, frozen pools,

or empty tabernacles, doors left open,

vacant and agape; like votives cooling,

motionless as stone in their cold focus.

As if they’d seen something. As if it all

came clear to them, at long last, in that last moment

of light perpetual or else the black

abyss of requiems and nothingness.

Only the dead know what the vision is,

beholding which they wholly faint away

amid their plenary indulgences.

In Paradisum, deducante we pray:

their first sight of what is or what isn’t.

11 September 2008

Charles

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Categories: dying, what does dying feel like?

For a while, now, I have been looking for someone to tell me what dying feels like. Tricky topic, I know, all the best witnesses being dead. Silly thing to do, friends have told me, don’t waste your time.

Dr Geoffrey Garret, onetime senior Home Office pathologist, tells us what dying looks like:

Life has a genuine presence that you can only really feel as it moves from a body. That is the sole time it shows itself, through its sudden absence. Though you cannot touch it, see it or hear it … life is nonetheless something one can feel, like electricity.

It is also true to say that one does not have to be physically close to sense the microsecond when it moves on.

You’d think that hospice nurses and care home staff would have some idea what dying feels like, having watched over so many departures. You’d think that one or two might have done it themselves, vicariously.

I was about to start researching this when along comes a pretty good answer in the shape of a new book by Peter and Elizabeth Fenwick, The Art of Dying. Dr Fenwick is a neurophysiologist, not a new age nutter. Difficult to roll the eyes and dismiss him out of hand.

The Fenwicks talk about ELEs – end of life experiences – when dying people become aware of the presence of friendly dead people who have come to receive them and guide them on their way. At the moment of death, a dying person will often gaze fixedly and with great joy.

They conclude that “a mechanistic view of brain function is inadequate to explain these transcendent experiences.” They refute any claim that these are drug induced experiences in dying people on the grounds that drugs give rise to altogether more psychedelic hallucinations.

The Fenwicks talk about the experiences of people miles away from a dying person who become aware of their death at the precise time it happens.

They talk about how some of the living have a continuing sense of the presence of a dead person.

They’re especially interesting about NDEs – near death experiences – especially those they term TDEs – temporary death experiences. Some survivors of cardiac arrest, brought back by CPR, experience the classic near death experience even though they are technically dead. The Fenwicks conclude: “From the point of view of science, TDEs cannot occur during unconsciousness, and yet there is some tantalising evidence that this is just when they do seem to occur.”

They conclude that consciousness may not be limited to the brain, and that, given the lovely time people have dying, “a greater understanding of what happens when we die would lead to a removal of our fear of death and open up the possibility of a new beginning, the start of a new journey.”

It’s all very intriguing and, as the Fenwicks say, worth researching further. They don’t claim to have the answer, but they are sceptical of the capability of reductionist medical science to crack the mystery.

It’s a book well worth reading. Rush out and buy it. And I’m looking forward to another, when it comes off the presses in a few days’ time. It is Gentle Dying by Felicity Warner, who heads up the UK’s only online hospice. It’s all about engaging with dying and making it a positive process, not “A losing fight with frightful pain / Or a gasping fight for breath” (Betjeman).

My neighbour’s house was repossessed yesterday. All her things are still in it. We don’t know where she is now. I rang the estate agent who, it turns out, traffics in this sort of misery daily, and, no, she doesn’t think about the feelings of the people this has happened to. If continuation of consciousness means more of the same shittiness of human nature, I’m very happy to buy into the idea of dying contentably. After that, though, please: lights out.