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Sunday, 19 May 2013

On Channelling Bradley Wiggins to Get Through the Day

It is Sunday, and I woke at 6 am as usual.  But this morning, I simply could not move.  Bradley, I said to myself, I know how you feel.  Bradley is ill at the moment, and can't cycle.  I am not ill, but I can't cycle, and that is how similar Bradley and I are.  At 8am I went to make myself breakfast, and while I was in the kitchen, I felt a great surge of happiness, and put it down to three things.  1. I don't have to do anything today if I don't want to  2. The A Graceful Death engagements have gone really well this week  3. Breakfast is my favourite meal of the day, so bring it on.

I am back in bed now, to write this account of things, and have my breakfast tray beside me.  I am so tired that I have spilt my tea a little on the duvet. The mug is almost too heavy to lift to my lips, and my tiny little hands falter as I try to pick it up.  And so, let us write this blog.  My tiny little hands can still type, thank God.

A Graceful Death went to St Catherine's Hospice in Crawley for three days this week.  I was able to show the exhibition there thanks to a friend who works in the Hospice, who put the whole thing in motion.  It was the first time it  has shown in a Hospice, and I enjoyed it very much.  I was so well looked after, I met some lovely people, and had some very insightful conversations with the staff as they visited the exhibition. We did not show all the paintings, we did not show the very ill and dying Steve, as we all thought that it was not sensitive to show them in an environment where patients are dying just like that.

And yesterday, Saturday, my friend Mandy and I put on a tiny weeny mini AGD exhibition in a Community centre in Chichester, with a talk from me about the work I do and what it all means, and a talk from Mandy on Soul Midwifery and vigilling at the end of life.  It was, if I may say so, a bold move.  We only had two hours, into which we crammed two talks, some mingling and milling, and the launch of Graceful Gifts, a range of thoughtful and loving commemoration gifts, condolence and bereavement cards, and items to buy to remember and love.  I made two pounds at the launch, so I am at the very beginning of marketing this idea.  I am very grateful too to Claire Rudland, who has made some very beautiful and thoughtful items to go into the Graceful Gifts.  And, Claire's mother, has offered the most wonderful range of colourful knitted bags for us to sell, and I think they are the kindest, most wonderful things we have.

The talks went well, and we met some very good new people.  There is much interest in end of life matters, there is so much concern that we are missing something in dealing with our dying.  The people who came to our talks all knew they could do something, and many had experiences in that field, but the feeling is that there should be something more.  I am beginning to think that the "more" that people talk of, is not really more, it is permission to stop worrying and just be themselves.  I think we are so afraid of upsetting people who are ill or dying, we don't want to be unmasked as inadequate and patently unable to do the right thing.  But, as Julia, the lady I have painted with Motor Neuron Disease said, she has been given a terminal diagnosis, what can anyone say to top that?  She says, just talk to her.  Sit with her.  I am thinking that as a community, we need permission to treat dying, and those who are doing it, as normal.  The professionals do a wonderful job, but that does not exclude us from taking part as members of the community, members of the family, and just being ourselves with our dying.  Think about it, doesn't that sound simple?  But it really is not simple, if you feel out of your depth, and that there is a secret to being with ill and dying people.  The wonderful thing about Soul Midwifery, is that anyone can do it.  It is not rocket science, it is not complicated, it is about coming back to basics, and honouring the dying person, and the dying process, without letting fear and conventions get in the way.  And Soul Midwives do not have an agenda, we go with an open mind, and we take our lead from who we are visiting. As with anything worthwhile, Soul Midwifery, working with the dying for A Graceful Death, takes time and practice to make it work.  The people who came yesterday to our event in Chichester, were already well on the way to making a difference, by just being who they were, and by being aware.

And now, here is the finished painting of Mike, with Motor Neuron Disease. The words on the painting are among the first that Mike tapped out on his keyboard for me when I first met him.  Those who know him well, tell me that this is typical Mike.




I have been asked to talk about A Graceful Death and the work I do at Brighton University Medical School in October.  The paintings will be on show for the evening, and I will talk about what I do and why.  The university has an interest in neurological diseases, and so Mike is coming to give a power point presentation with me, on having MND.  He is going to stay for the question and answer session, and will use his keyboard to reply.  I am so excited about doing this, and having Mike's input.  After all, he is the one who knows what MND is about.

And here is Julia, also with Motor Neuron Disease





Julia has taken a year to become almost completely immobile and unable to talk.  Mike has taken ten years to get to this stage.  The Julia painted here, does not look like this any more.  She is thinner, and has a neck brace, an oxygen mask, a feeding tube into her stomach, and she cannot say more than a few words.  Her throat does not work, and she cannot use it.  On the arm of her chair, is a piece of paper with the names of her husband, Barry, and her two children, Adam and Elizabeth.  There is a forget me not with four flowers next to the paper.  Eileen, my photographer and film maker friend and colleague, and I are hoping to interview Julia on film to use in October for the students in the Brighton Medical school. Julia is gentle and serene, and suffering greatly in not being able to look after her family any more.  Her husband Barry, does everything for her and is, like all carers, an unsung hero.

And so.  What now.  Well, today is given over to exaggerating how tired I am if anyone is looking.  I am driving to my mother's house today at lunch time, to collect Giant Boy who is staying with her.  Mother goes to cash and carry before he arrives so that she has enough to keep him from starving to death.  She is experienced, she has raised four children, three of which were large and hairy boys and one of which was me, and I am no shrinking violet when it comes to meal times.  Soon, I will get up, and stagger to my car.  Oh, that reminds me, I left a folding up bookshelf at the Community Centre last evening, I must go and find it.  It is a measure of how tired I am that I look at the blank space, with piles of books all higgeldy piggeldy on the floor around it, in the hallway where it used to go, and think Oh it doesn't look that bad.  Oh maybe someone has found it and needs it more than me.  Oh maybe I will just go back to sleep.  

No.  I will channel Bradley, and get up.  Bradley wouldn't stay in bed, even if he couldn't cycle that day, and leave a bookshelf in Chichester at a Community Centre.  Bradley would push aside his breakfast tray, put his lycra back into the cupboard, get dressed and stagger to the car with grim determination in his eyes.  And later on in the day, Mrs Bradley would look at him with adoration, as the books from the floor are back in colour order on the bookshelf that spent the night outside a Community Centre in Chichester.  And all is right with the world.  And on that happy note, Bradley, let's go.