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John's Song - Orlando Gough

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John's Story

 

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Meeting John and Gina

John and GinaMarch 3rd 2004.

The first thing I notice as I walk into John's sitting room is a nebuliser - an oxygen machine. John has lung cancer and often becomes breathless. There is also a prominent computer.

'And this is my wife Gina', John puffs. A small woman with neat silver hair smiles up at me from a sofa in the corner. She seems slightly bewildered. 'Chris has come from the hospice to make a video with me', John explains.

I am here to film John reading a poem written by a man who has recently died at the hospice. John has a beautiful voice, now compromised by his illness, but still full and warm. He was once a professional performer and this is why I've asked him to read the poem.

I cue John through the lines and Gina watches politely. When we've finished he asks her to make us a cup of tea. She seems pleased to have something to do and vanishes into the kitchen with an air of purpose.

Later I compliment her on the tea and notice something odd about her expression. It is as if she has not fully understood me and is scared of asking me what I mean. She seems to have forgotten why I'm here or who I am.

March 12th 2004.

Today John explains. 'Dementia' is the word he uses. 'Alzheimer's?' I offer, and he nods.

photo of handsOct 5th 2004.

It's been a while since my visit to John and the difficulty of his situation has stayed with me. We've been in regular contact at the hospice because he is very keen to have his own page on the Rosetta Life web site, where he can post his own photographs and thoughts, and communicate with others. The idea of our 'community pages' is that hospice users can add content to their own small part of the web site, thereby gaining a degree of control over the process, but there's still a modest digital learning curve involved and this has frustrated John, who needs results - now.

What strikes me about John's enthusiasm for his computer is that it allows him to bring some order to a life that feels to him as if it's disintegrating. Simple photo applications, message boards, and word processing, enable him to discover sense in his own story and tell it to others. He's finding purpose.

It's while we're trying to troubleshoot some computer problem that we start talking about his home situation. I suggest that a song could be written about his experiences, and the role of the carer and cared-for. He seems interested. We arrange to talk more.

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