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Saturday, 5 October 2013

AGD goes to Brighton University Medical School and Julia's powerful MND interview

A Graceful Death went to Brighton University Medical School this week and did its thing.

Before the event, sitting with dead Steve for a moment.
We, Endre the Hungarian lodger who, having just moved in, was asked to finish his unpacking and come to Bournemouth now to make a film of a man with MND for me, and did, and I set the paintings up during the day in the big public foyer of the building next to the cafe.  The exhibition opened at 6, the talk started at about 6.30, and at about 8, everyone was encouraged to go back to the exhibition and experience the paintings after having heard me speak about what I do.

We were surrounded by students coming and going in waves, all watching, looking, asking questions, talking about death and dying and interacting as the paintings went up, reading the stories, poems and explanations.  All afternoon, I had emails and texts from them, telling me what they thought of the idea of paintings from the end of life, of the works, and how it had moved and inspired them.  I loved it.  They were direct with their questions and responses, it made me see how wonderful it would be to work amongst young people for whom death and dying were open to discussion and full of fascination.  I even had a poem sent to me from the Accounts Department.  A very good poem.  It will join the others with the next showing of AGD in Bridport at the beginning of November.  Thank you for that, David.

I enjoyed speaking very much.  It is such a help to be talking about paintings, as they come up on the power point behind me and I know them so well.  I love my paintings, I love the people in them, and I feel linked to them for the time we spent together. I am very involved with each painting, and remember much about how it felt to be with that person, and how their story unfolded.  And the audience like to hear about who is being represented to them.  They like to know who they are seeing, and be introduced to them as if they are a new friend.  I expect each person forms their own relationships with the painted images of the people in AGD.  Part of the beauty is that the stories are meant to touch you in the most appropriate way possible for you. You find your own meaning.

I loved the questions and answers afterwards. It is just wonderful to have people ask you what you think, and what your opinion is, and be unable to get away or shut you up because they are part of an audience and your job is to answer their questions.  One of the questions was, do I teach?  Do I teach medical students, because they would benefit from this approach to the end of life?  My reply was that I would love to talk to medical students.  The lady who asked the question made a very good point, she is a palliative care nurse who now works in education, and she comes across countless students that are nervous about this part of their career.

When we were setting AGD up in the foyer, with our waves of students coming and going and asking questions, many of them were medical students and all of them told me that they were afraid of end of life care.  "What will I do?" they asked, "What if I do it wrong, what if I say the wrong thing?"  They were very nervous of encountering dying people and felt that the experience would be far outside their comfort zone. I asked them what they felt was expected of them when they had to deal with patients with palliative needs.  We talked of their fears, and the feelings of helplessness and awkwardness they thought they would have on meeting dying people.  That as doctors and medics, they should know what to do, and would have to answer questions and get them all correct. They felt that they needed to protect themselves from being shown up as wrong, or as stupid, or even, as emotional.  One medical student suggested coming with me to visit people for AGD.  I think that this shows that the students want to explore this part of their training.  They want to do it, but safely, without feeling that they are being thrown into the deep end and that they must pass some kind of test.  If it were possible, I would gladly take a student or two to visit someone I work with for AGD.  It may well be a very good idea.  Much to think about. The A Graceful Death exhibition is an excellent spring board for all sorts of  discussions on dying.  It is different to talk with someone who works through art and words, telling stories of the end of life to the wider community, so that their dying experiences can be seen for what they are - sad, peaceful, difficult, terrifying, releasing, with moments of surprising wonder and love, truthful, meaningful and most of all, normal.

The next day we packed up, loaded up the car, and left.  I don't know about Hungarian Endre ( he is very stoic), but I was pooped.

Having a sleep next to dead Steve.  As one does.  Exhausted.  Pooped.
I want now to share with you six minutes of the film that Eileen took of an interview of Julia, one of my MND sitters for AGD, talking a few weeks before her death.  I must warn you that it is hard to watch, because Julia is dying, Julia cannot now speak because of her MND and that there is a great need for her to tell her daughter Elizabeth that she understands how afraid Elizabeth is. The parts in the film when Julia looks away and moves her eyes are when she cannot make her words understood and she looks at the special board with letters on it.  She looks at a letter at a time to spell out a word and looks at Yes or No written at the edge of the board when we get her words right or wrong.

Elizabeth is 12.  She has not been able to speak to nor spend time with her mother, because she is so frightened.  Elizabeth is a lovely girl, and in this clip agreed to join us as we film Julia.  This clip is part of a longer interview showing how MND limits communication, and affects the body, but does not touch the mind.  None of us expected this encounter, in which Julia spends much energy trying to tell Elizabeth, who sits next to her, that she understands how frightened she is, and that nothing, nothing, can be too much for Julia to hear from her daughter.  Elizabeth does tell her that she is afraid, and that she does not want her mother to go.  Something important happens, a conversation that needed to be had, and you can see the strength, the wisdom of Julia the mother and the love of both Julia and Elizabeth for each other. We were all tearful after this, and we thank Barry, Julia's husband, for agreeing to the filming in the first place.  We thank Elizabeth for her strength and honesty. She really is a lovely girl.  Here we go -

                        

Julia, kind intelligent much loved Julia died on 9 August 2013.


Julia about two months before this interview, able to talk, but with difficulty and able to move her head.  On the arm of her chair are the names of her husband Barry, and her children Adam and Elizabeth with a forget me not.