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 Sneak preview: Oppy's next article

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Opathu

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PostSubject: Sneak preview: Oppy''s next article   Fri May 22, 2009 5:15 pm

FWIW. This is the *introduction* to a major new story of mine, appearing soon in a British weekend newspaper, in the colour magazine. There will be *five people* also profiled in this story (I haven't put their stories there yet).

******


DYING TO LIVE


What does it mean to be dying? Nick Ryan has been following five people with terminal illness as they journey towards the end of life. Here they share their stories. Portraits by Andy Gotts.


'Every man must do two things alone; he must do his own believing and his own dying.'
Martin Luther (1483-1546) German priest and scholar.



IT IS the great leveller. And the last taboo. It brings down rich and poor alike. Hollywood gives it glamour; poets gild it with romance. Oscar Wilde even tried to make light of it. "My wallpaper and I are fighting a duel to the death. One or other of us has got to go," he muttered from a Parisian hotel, sipping his last champagne. Our tabloids mawkishly follow its path, too, through the spectacle of reality TV star Jade Goody and actors such as Farrah Fawcett and Patrick Swayze fighting their doomed battles with cancer.

Back in 1789, Benjamin Franklin wrote: "There is nothing certain but death and taxes." In our topsy-turvy world, you can experiment with drugs, sex, music, alter your body, aspire to billion-dollar empires from barrow-boy dreams, or immerse yourself in virtual worlds. But Death still terrifies – particularly in a society that is constantly on the move, increasingly individualised, its communities and traditional beliefs in upheaval.

Yet according to a recent survey from theology think-tank Theos, we don't talk about death nearly enough. If we did, then maybe half of us would not fear it, says its director Paul Woolley:

"Death today is handled very differently from the way it was in the past. For example, in the Victorian period, it was common practice for people when they had died to be kept in the home that they lived in, in an open coffin. Relatives paid their respects and would see a dead body, so death in terms of the frequency of it and people's day-to-day contact with it was higher and less removed."

In Mexico, El Día de los Muertos ('Day of the Dead') sees families coming together to celebrate loved ones who have passed away, honoring the deceased using sugar skulls, marigolds, and the favorite foods and drinks of the departed. In more ancient cultures still, like the tribal clans in Papua New Guinea, ancestors are venerated and spirits take a daily part in peoples' lives.

Yet it is not just our society that shies from mortality. Chinese emperors long sought the secret of eternal life, ingesting strange concoctions and minerals in an effort to stave off the inevitable (several are thought to have died as a result of poisoning from these 'elixirs'). Today the internet links a modern-day equivalent: Extropians, individuals dedicated to defeating death and prolonging life through scientific advance. One, a friend of mine, has paid £10,000 to have his head frozen when he dies. ("My insurance policy," he says, joking: "Hey, it's worth a shot!")

Yet we still die. And there is a whole branch of medicine dedicated to the dying: palliative care. Palliative care aims to bring dignity and quality of life, through measures such as pain relief, to those with life-limiting and terminal conditions. Palliative care practitioners don't aim to "cure" – their goal is to prevent and relieve suffering. Many argue that the mainstream medical profession is still too focused on impersonal hospital care and prolonging life, even when it causes suffering to the patient (and their family).

In the brilliant heat of a South African spring, I came across one of palliative care’s champions. Father Kieran Creagh ministered to the dying at the Leratong Hospice, just west of Pretoria, in a shanty town that had been wracked by inter-communal violence. HIV/AIDS had decimated this community. Creagh told me of his passionate belief in bringing dignity for the dying, many of whom were cast out by their own families and left to rot inside filthy, cloying shacks. He had seen the IRA murder two men on his very doorstep when he was just 14; in 2007 he was shot three times by robbers and had to be resuscitated on the operating table.

"Seeing all the evil of the Troubles, I thought there had to be answer," he told me from the very courtyard where he had been shot. "People were dropping like flies here, too, of AIDS, young girls who'd done nothing wrong. I couldn't just stand and do nothing." The hospice he built now cares for hundreds of patients a year; not only that, it brings life – in the form of anti-retroviral drugs – to those who would otherwise die of their disease. Many other hospices took out food parcels to the poor and the sick; or like Leratong, provided clinics and creches where patients and their families could find respite from the desperate grind of their all-too-short lives.

Creagh's passion got me thinking about the UK. Why do we run from death? Visiting British hospices, with help from its national federation, Help the Hospices, I saw the priceless work undertaken by countless volunteers (there are 100,000 of them up and down the country) helping bring dignity and love to those facing the end of their days. A quarter of a million people are cared for by these organisations every year, either in the hospice itself or in their own home (a large number of us wish to die in our own beds, research shows).

All too often, though, the work of hospices is neglected. Few receive a penny from the Government, mostly relying on donations. In the UK, £1.3 million is spent on hospice care every day. Of this, only £397,000 comes from government sources, leaving hospices to raise another £903,000 per day.

As I met individuals facing up to their own death, I learned, too, that the staff helping them talked very much about 'living with dying': we rarely just keel over (unlike Hollywood movies). There may be many months, and years, of scans, treatments, side effects and fears to deal with. Hospices will help through this journey. Often there can be remissions, too. In the course of this article I spoke on the phone with those who died before I could meet them; who died shortly after we had met; and those who also entered remission (from their disease) and are still with us today.

We are approaching the anniversary of the Government’s first ever End of Life strategy in July: a 10 year plan outlining how society should approach care for the terminally ill, allowing more choice and control over the way we end our lives. It included an extra £268m for palliative care. According to David Praill, chief executive of Help the Hospices: "The majority of hospice care is provided by local charities in people's own homes, and the chances of dying in your preferred location increases if you are being cared for by a local hospice," he said.

If there was a common theme among the individuals I met on this final journey, it was that they were both unremarkable and at the same time most remarkable. Only two knew each other, Mandy and David, from their work on national palliative care committees. If there was another common trait they all shared, however, it was determination. Each had a commitment to charity (or in David’s case, politics), to do something for the future – even if they wouldn’t be around to see it. And most of all they were full of life! Humour and passion bubbled out of them, even at their lowest ebb.

They were – they are – very ordinary yet inspirational individuals. I hope their messages, and my journey, serve to lift the dark veil on death. Just a little. For isn’t it time we acknowledge who and what we really are? As playwright Bertolt Brecht put it: “Do not fear death so much, but rather the inadequate life."

Myself, I prefer to remember this anonymous line: "No-one ever went to their deathbed wishing they'd worked another day in the office."


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PostSubject: Re: Sneak preview: Oppy's next article   Fri May 22, 2009 5:46 pm

Great intro. Which paper will it be in?

i think i'll have to break my vow never to buy newpapers again so i can read it Razz

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Morgalyen

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PostSubject: Re: Sneak preview: Oppy's next article   Fri May 22, 2009 9:20 pm

Great intro indeed..... must make a nice read when the whole story will be posted where ever it will be posted.
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Yuxi

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PostSubject: Re: Sneak preview: Oppy's next article   Tue May 26, 2009 9:12 am

Yeah, this I would read if I could. Will it be available online too?
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PostSubject: Re: Sneak preview: Oppy's next article   Tue May 26, 2009 9:49 am

Opathu wrote:

Myself, I prefer to remember this anonymous line: "No-one ever went to their deathbed wishing they'd worked another day in the office."

Here here!
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PostSubject: Re: Sneak preview: Oppy's next article   Tue May 26, 2009 10:05 am

Ok, here is *one* of the five case studies going alongside that article.

***

David can hardly speak. The cancer has seen to that. It is eating away his throat. But from within his sunken face sparkle dark, humorous eyes. He may be slipping away to the disease which has twice revisited him, but David remains very much alive.

“I’m supposed to be terminally ill,” he slurs, his voice a whisper. “Dying of cancer. Colon, liver ... throat,” he lists. “I’m not bothered with it,” he answers. “I’ve got good care, three carers, one of the poor buggers is in there right now [points to kitchen].”

David is a journalist and lobbyist. Housing and issues around “dying well” concern him. He has lobbied against assisted suicide. He has a fierce, dry wit.

The flat about him is small; hot. There are pictures of daughters, dead wives, friends and grandkids. One photo shows a jovial, fleshy man, round-faced: with a shock I realise this is the same figure in front of me now. A Burmese carer is present at all times. David is Jewish but for many years has been involved in the Free Burma campaign.

He has cared for and buried two wives; seen close up what terminal disease can do. "I was married twice; my first wife died of leukemia. She was cared for in a hospice in Leeds. She was 38. I was left with three kids. That was 1981. My second wife died three years ago. Breast cancer. "

As for David, he was too busy raising the (seven) kids left behind to think of his own health. He had Crohn's (bowel) disease. Things went slowly at first: in 1995 he had a cholostemy. Then later an iliostemy. "It progressed into the bowel cancer. But I didn't do anything about it. It's my fault," he says, fatalistically. "If I had, this – " he gestures, weakly to himself, "probably wouldn't have happened."

Things started taking a turn for the worse about a year ago, when he started having throat problems. “They thought they’d cured it, but it seems to have come back. You don’t think you’re ever going to live forever, do you?”

I ask how many drugs he takes. He mumbles: "Follow me in here". He shuffles and makes his way slowly, past the myriad books he reviews, to a cramped bedroom. A huge array of pills sit on a dressing table. His bed is specially adapted, just like the ones you see in hospital. He picks up various bottles one by one. "Anti-sickness pills … morphine … E45 …." He reels off name after name. "Eye drops …" He picks up another. Then one more. "These are to keep me awake, s'new experimental drug. These are patches, slow input morphine."

"It's a hospice by itself," he smiles.

So how does he cope? “The worst thing is the lack of speech. When you first came,” he says, turning to his carer, “I could speak all right? I just stopped speaking. About a year ago. I can cope with all the other things. Arthritis I’ve got. Not being able to express myself as much as I’d like to [is the worst thing].”

He gets annoyed when I ask if he’s suffering. “I’m not suffering, let me say. Don’t talk about suffering. It’s a bad term to use. Pain you can put up with. Speaking you can put up with. People not treating you as an average normal human being: I hate being referred to as a patient, a service user. All these are rubbish terms, they don’t mean anything … Nobody worries about your mind."

How long does he think he’s got? “Two months. Three months maybe. I’m not counting the days. I’m now in minus days. They gave me 12 months eighteen months ago.”

He has had two wives die; his parents; a boy who died when three. Now at the end of his own life, David says: "We don't know how to cope with death." When I ask him what nuggets of wisdom he has gleaned from his own journey, he simply replies: "I'm more concerned with living well than dying well."
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PostSubject: Re: Sneak preview: Oppy's next article   Tue May 26, 2009 12:10 pm

Hm...I saw this and looks like a really good artical.
After you published it can you put it on forum too?
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PostSubject: Re: Sneak preview: Oppy's next article   Tue May 26, 2009 12:14 pm

I'll try to. And thanks. I know it's a grim subject, but someone has to write on these things. Unfortunately for me, I always pick the difficult real-life stuff no-one wants to read -- no matter how well or badly you write it. Mad
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PostSubject: Re: Sneak preview: Oppy's next article   Fri Oct 09, 2009 10:32 am

p.s. this article is now up in full at:

http://www.nickryan.net/articles/dying.html
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