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).
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DYING TO LIVEWhat 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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