I’ve known David for the past 13 years. A gifted teacher and poet, for many years he has been plagued by a terrible disease which, so the doctors said, should have killed him years ago. Lately it got so bad, he had to go into hospital long term to fight it. He lost one leg to the disease. Then the other. As the days, weeks and months drew on, the Net became a vital source of news about his progress.
With so many friends and family wanting news, just keeping everyone informed had been a full time job for his wife, Katy. Eventually she put together a web site to catalogue how Dave was doing. Through it, he has been contacted and encouraged by friends, family and even other visitors. It’s helped at least, especially when the days have been hard, to carry the simple burden of communication.
Now, the Net is being formally recognised as an outlet for patients to give vent to their experiences and creativity by a UK charity.
Rosetta Life is a charity which puts artists in residence in hospices around the UK. The artist-led organisation enables those with life threatening illnesses and their families to express and channel their experiences through the arts.
This week it launched a digital network, linking fifteen hospices in the Rosetta Life network, giving some two hundred hospice users the opportunity to work with artists-in-residence via digital means and publish their work on the site Rosettalife.org.
The initiative was launched at Rosetta Live!, the first national festival of the arts in palliative care. It featured specially commissioned works by leading international performing and visual artists, such as director Mike Figgis (best known for Leaving Las Vegas), Meredith Monk, the composer, and Dr Oliver Sacks (the writer best known for the film Awakenings). The festival included live performances,murals, installations, films, talks and a series of video projections.
Funded largely by the Arts Council and backed in part by Barclays Bank, the festival produced some amazing moments. For instance, a one act musical theatre piece was performed, which contained a libretto written by two people suffering of cancer, one from AIDS and two from Multiple Sclerosis.
The project is well named for the digital space. Rosetta Life founders Lucinda Jarrett and Filipa Pereira-Stubbs say they chose the Rosetta Stone, the ancient Egyptian rock, because its interweaving of three languages helped to unlock the code of hieroglyphics. Similarly, the charity’s arts focus aims to unlock the ‘code’ of the dying.
Rosetta Live! features the artistic work of hospice residents, but it has a wider role. The project will produce six live-streamed web events a year, accessible to approximately fifty receiving hospices (including South Africa), each equipped with broadband video conferencing, and participating through web chat. Rosetta Live! will also go out to the wider web via the Rosettalife.org site. Each event will be archived on Rosettalife.org and made available to other hospices for online learning.
The web site also offers an opportunity for people with terminal illnesses to share their experiences with eachother online. It’s a great example of how digital channels like the Net can be used to engage patient with patient, patient with doctor in a new way, in particular through the arts.
Jarrett, also creative director of the festival, says: “Working within hospices for the last ten years, I have realised that those facing the end of life have a unique capacity to teach the living how to live. Rosetta Live! will offer the first public platform for this experience, highlighting the value of the arts in delivering palliative care.” Each Rosetta hospice/hospital is equipped with a digital arts centre – computers, cameras, and scanners – allowing people to produce artwork of the highest quality, and digitally.
Searching the Net for examples of how people use online as a cathartic way of sharing their experiences of illness, and pretty soon you realise how powerful a medium it can be. “It was three years ago on this date that I was diagnosed with kidney cancer,” writes one woman on her blog, who eventually recovered. “I thank God for this every day. Life is sweet.”
As for David, he is fighting on against ‘Polyarteritis nodosa‘ and its damned complications. He cannot post directly to the web site at the moment, and Internet access from the hospital is highly limited. But Katy updates it regularly. If you want to send him your support visit Loffman.co.uk.