I am lying on my sofa downstairs, fully dressed (in control) and wrapped up in a pink and white spotty blanket. The sun is shining in through the window and I have had quiche for breakfast. I like quiche, I have made enough to keep me going for seven years.
My two boys are here, the giant one is ill and the other one is still asleep after being enigmatic and popular at a party somewhere last night. My daughter is ill in her house, and does not need to come home because her friends are bringing her honey toast, and that is making a big difference. Quick! said a text from my daughter while I was at a meeting yesterday, urgent! I phoned her back in a panic, tell me, I said, are you going to die? No, she said, I need the recipe for pancakes. I cannot eat honey toast any more, and I must have pancakes. Quick, what is the recipe?
I had a Soul Midwife meeting here on Monday. This will have been the fourth such meeting, open to all Soul Midwives, and is a friendly, thoughtful gathering of people who have trained as Soul Midwives, and who work in many different areas within end of life care. It was as usual, full of passion and discussion. It seems to me, and always has, that we Soul Midwives need each other. We need to meet and talk, we need to see what other Soul Midwives look like and how they are using soul midwifery in their working lives. Left alone, a single Soul Midwife may wither and fade, as it takes time to assimilate our training into a form we can use. Together, we are full of information, experience, thoughts and advice. I need the input from the others, I can't do it alone. At the meeting, we had nurses, community and palliative care, a nursing home manager, a sound therapist with a law background, an artist (me!), and a lady with nursing and care home experience who is dedicated to setting up a community for birth, life and death.
I am still, though, stepping back from Soul Midwifery to concentrate on my art. I will continue to host these meetings because I love it, and there is much inspiration from listening to the people who come to share their stories, thoughts and opinions. I am a great hostess, I look forward to a good gathering, and I love to get people together to connect and inspire. But my journey is through my art, and any Soul Midwifery I do will be within A Graceful Death. So if, for example, someone staggers up to me at a train station, and gasps, Quick! I haven't got long, I want you and only you to stay with me till I die, which could be any time within the next ten minutes to four days, I won't say Be off with you! I will only do it if I can paint you and interview you and Eileen records it.
I will always do what I can to help people at the end of life, and their families, and I am looking forward to our next Soul Midwife gathering here, but I am taking a step back. So I won't pursue Soul Midwifery, but if it comes to me, I will do it gladly.
Yesterday I spent time with Julia, who I have mentioned before. Julia has Motor Neuron Disease, and has become immobile and housebound within a year of her diagnosis. Today, in fact, is the anniversary of that diagnosis. I am painting Julia for the A Graceful Death exhibition and so I went back to see her, and Barry her husband, to update them on what I am doing. It is lovely to see her. I don't know Julia really, I have only met her with her MND, and always through the work I do for the exhibition. But I am struck by how articulate and honest she and Barry are. My interest in their story is the day to day reality of it. Doctors and researchers can fill me in on the way the disease works, and how it affects the muscles. There can be any amount of facts to learn about it, and that is invaluable. What I want is to know what is it like at 3am? How is it on a Tuesday when Julia needs an oxygen mask during the day when she has not needed one before? What is it like for Barry to feel tired and worried about running his business from home, and caring for Julia, and the two children? Barry summed it up for me in mentioning their front garden wall. A bus went into it a while ago, says Barry, and he wanted to repair it. He can lay bricks, it is not something he can't do. But he has never got round to it, Julia has needed so much care. I feel people are passing by outside, he says, and wondering why that family hasn't mended their wall yet. What is keeping them? But behind the front door, says Barry, they have no idea of what we are coping with. When everyone carries on with their lives, we are having to change and adapt and do the best we can with Julia deteriorating fast. No one can tell that from looking at the wall and at our front door.
Julia said that she needs patience from others. It takes her a long time to say what she wants to say, and it is hard for her when her listener doesn't let her finish. Her listener may finish her sentence for her, or walk away before she has finished, and think that they know what she is saying but they don't. Often, Julia says, they get it wrong. And, she says, she can move her legs. She takes a long time, but she does not need them moved for her. This made me aware of how we as a society, do not like silences, pauses, and slowness. Julia can't join in a conversation as it is whizzing by her, but she still has her opinions and much to say. It just sounds different to stop, and wait for her to articulate. How many of us do that to those who are slower in speech than we are? Mike, who I am painting for A Graceful Death too, another MND sufferer, communicates through an ipad. It takes time and silence for Mike to write down his sentence, but there is nothing wrong with Mike's mind. In order to talk to both Julia and Mike, we have to go through silences and long waits. The dynamics of interaction change, and we are not used to it, nor comfortable with it, nor do we often even notice it. It will take practice to stop and allow a long time to have a conversation. Mike has said that there is a running conversation going round in his mind. Same with Julia. I am very keen to use these interviews with Mike and Julia in the exhibition. These talks with Julia, Barry, Mike and his wife Michelle, are golden opportunities for us who are not ill, who take for granted our speech, movement, long life and strength, to stop and hear what it is like when we don't have these things any more. And on top of that, there is nothing wrong with our minds. We are still the same person we were, in our hearts, before our diagnosis. Both Julia and Mike dream at night that they are running and walking.
Tomorrow, I am going to Leeds with Eileen. We are looking forward to visiting Dr Kate Granger to film an interview, to photograph her and to chat to her as she will be joining the A Graceful Death exhibition too. Kate is 31, and a medical doctor. She has terminal cancer, and has chosen to return to work as a doctor. Kate has also written about her experiences, which are ongoing, of being both a medic and a patient, a wife, a daughter, a friend and a terminally ill young woman. Kate's blog is worth reading -
http://drkategranger.wordpress.com/
I find her observations from both sides of the hospital experience fascinating. I met Kate in Edinburgh at the Good Life, Good Death, Good Grief annual event, and liked her very much indeed.
And next week, I start to paint! I have all that I need to start on my four paintings for this year. I know what I will do, I will set up four large surfaces and work on all four of them simultaneously. It may take me a long time, but I feel they are linked in many ways. And of course this way, I can get thoroughly messy. I will lock myself away and become a little potty, and I feel I may end up in the studio like this -
And now. I must pack. I am staying in London with Eileen tonight so that we can get to Leeds nice and early tomorrow. I have less than a week, then, before I go into the studio and come out some time later, a little eccentric, but with four new paintings for AGD.
And in the meantime, some more quiche.
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