Saturday, 6 April 2013

Downing the Hoover, and Painting the Dying

This week, I have successfully downed my hoover, my mops and washing up cloths, and gone across the ricketty bridge (see last week's blog) to the studio.  I have firmly closed the door behind me, keeping it in place now with a sock instead of the old folded bit of newspaper.  The handle and the lock fell off a long time ago and the door will only stay closed with something to keep it wedged in place.  The newspaper had disintegrated in rain and so I have found an old sock to take its place.  I feel efficient.  I have four large canvases on which to paint my four people for this year's final intake of portraits for the A Graceful Death exhibition, and I have my easel up and ready.  Go, Boudicca, I said to myself, go and do that thing.  I have heard that in some circles one can channel a hero, or a god or goddess of some kind, and so when Boudicca popped into my mind I thought, well, perhaps that is a good idea to get me started. That is nice, let's channel some Boudicca.  She was not afraid of a challenge, but perhaps as she was a little bloodthirsty and argumentative, I'll stop after a few moments.  I don't want my A Graceful Death paintings to become aggressive.  I'll just channel, if I can, never having done this kind of thing before, her good points, such as her assertiveness and her ability to get a job done.  I'll stop if I feel I want to set fire to something.

I have begun to paint Mike.  Mike is one of my Motor Neuron Disease sitters.  I want to show Mike exactly as he is, unable to move, in his wheelchair.  I want to show how his body sits in his chair, how his feet cross over themselves a little, how it makes him tired to lift his head, and how his keyboard is placed just in front of his hands so that he can tap out his words with one finger.  I want to show Mike's energy, and his intelligence, which is all there in the mix, even though he cannot move.  Mike seems to me to be a challenge.  Here he is, in his chair, I can walk into and out of a room, Mike can't.  I can cross my legs and scratch my nose, Mike can't.  But you know Mike is no pushover, is in control of his mind, and doesn't miss a trick.  I want to capture some of this within Mike's paralysed body as it sits in his very fancy wheelchair.  Oh! The wheelchair!  I cannot for the life of me, see this wheelchair properly.  In order to paint something, I have to understand it.  I have to see it, work out how it is connected to all of its bits, how it all joins up together - this includes people - and then I can begin to paint it.  Mike's wheelchair is a marvel of engineering.  It has pipes and knobs and black metal bits obscuring other black metal bits, it has buttons, wheels (thank goodness) and wires.  I cannot for the life of me work it out. And so I have had to study some wheelchair designs to see if I can understand it.  I had a feeling this would happen, I wonder if I can paint Mike as realistically as I can and make his wheelchair entirely impressionistic.  I can hope that the mind, that can play tricks, will see a very detailed and fancy wheelchair from a mass of thick whirling brushstokes that suggest it, and it is only when someone points out that he, Mike, is sitting on some kind of whirling painty porridge, with wheels, that the minds snaps back into order and says, boy.  She (or Boudicca) had real trouble with that, didn't she?  Couldn't for the life of her work out that fancy wheelchair.  Or I can do a kind of Heath Robinson contraption and hope that no one notices that either.

I am starting to paint Julia too.  Julia also has MND and has deteriorated in a year almost to the point where Mike is after ten years.  Julia's energy is gentle and compassionate.  What I want to capture with Julia is, as with Mike, that her limbs that no longer move and how, for example, her arm looks as if it can't move.  How her muscles no longer give her arms and hands the same form as, for example, mine.  Julia has large eyes and she has a look in them that says something of who she is.  When I work on her eyes, I will try to understand what that is.  Since we last spoke, Julia has had a PEG, a feeding tube fitted, and I know she was not looking forward to that.  Her MND is swift and unrelenting.

Both Mike and Julia's families are intimately involved with their care. Mike's wife, Michelle, is very much involved with his care, and is, according to Mike, wonderful.  And Julia's husband Barry, is also, according to Julia, wonderful too.  Having met both Michelle and Barry, and not really knowing them, I raise my hat to them both for their dedication, patience and love.  

Kate Granger is also one of my portraits.  Kate is a very successful doctor who at 31 is dying of cancer, and making her dying as public as she can to educate and help the medical profession, and all of us, the public, understand how it feels.  Kate is not paralysed, and looks really healthy and pretty.  I will enjoy painting Kate, and I think what I want to capture with Kate is her deep intelligence and her girl next door looks.  There is nothing visible at all to link her with her terminal cancer.  Kate's portrait will be very important, it will show that not all dying is visible.  It will show that dying can look like a person who is dressed, smiling, sitting on her sofa and planning another day's work at the hospital tomorrow. Kate is still working hard as a doctor and still helping to change policy within NHS to enable the process of dying to be more understood.  She is a huge fan of, and will be on when her time comes, the Liverpool Care Pathway.  Kate has written two books of her experiences, and is a powerful communicator now within the media, to educate, explain and help to make better, the process of dying.  You will see her on the television, in the newspapers, and hear her on the radio.  She is modest, unassuming and deeply committed to medicine and helping people.  Kate's books are The Other Side, and The Bright Side.  Please buy them and read them.  All proceeds from Kate's books and other fund raising works, go to the Yorkshire Cancer Centre.  She has already raised thousands and thousands of pounds for them.  Kate also blogs - follow her here

And finally, Claire.  Claire is so important. Claire recovered from her cancer, against the odds, and can speak with such insight and compassion about how it is to receive Hospice treatment, and how it is to be so ill, that she wanted to die.  And then, how she didn't die.  I am painting Claire's vulnerability and her strength.  All in one go.  And she is very beautiful, I am painting that.  Clair has hair now, she has make up, she can live again, and has been to a place that not many of us have been to, and come back.  She is so grateful for each day as it comes, and we can learn much from how she is dealing with her new life. Her body is not the same as it was, there are real scars from her cancer and the treatment she needed to have.  Claire lives just round the corner to me too.  I first met Claire in the Hospice where I volunteer.  Neither of us could ever have imagined that she would go home, get better, or even that we lived so near to each other in Bognor.  And because the AGD exhibition is entirely separate from and never mentioned in any Hospice of end of life work that I do, Claire had no idea at all, that I have this exhibition.  Life really is a funny old thing.

I want to introduce to you now, the new A Graceful Death Channel, on Youtube.  This has been set up to hold the interviews that Eileen Rafferty films.  Eileen, as you all know, is the AGD photographer and film maker extraordinaire, and is one of my dearest, oldest friends.  She has begun to record interviews with people I am painting, and we aim to bring the films, the paintings, and the writings together for the exhibition.  So far, we have three separate and fascinating interviews that Eileen filmed, with Claire, and her friend Jacky, on the AGD Channel.  By the end of the month, we should have Kate's interview, and so we shall add interviews as we do them.  Please look now at Claire and Jackie.

Time now to channel a hero that gets out of bed, and gets on with the day.  I am, of course, writing this from my lovely bed full of duvets and cushions, and Boudicca is saved for the studio.  I shall just lie here until I can think of a suitable hero to connect with, and in the meantime, to help me think, I will just lie down and close my eyes.  I may be here for some time.  I hope that a morning off will not enrage Boudicca in the studio, I hope that she does not go and find a hero/god/goddess herself, for me to channel, to get me out of bed.  I can imagine I won't have an easy time of it if that happens, and I will be cowering under my lovely duvets trying to convince Thor that I am not here, I am somewhere else working hard and that someone else probably needs to channel him a lot more than I do.  Until then, I will just lie back down and have a think.


  1. Please let me know when you find a hero that gets out of bed and gets on with things as I've been looking for such a one for a long time!

    I've been following the AGD project through Eileen for quite a while now and I think you're doing such wonderful work. To me the videos are so affirming of the love and courage that can surround the person who is facing death. I wish you well and also hope you take as much time as you need to rest and replenish.

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