Sunday, 1 June 2014

Oh What a Week That Was! A Graceful Death in Preston Park, Brighton.

The exhibition was fabulous.  The exhibition is over.  A week has passed since I packed up the paintings, put the church back, and drove myself wearily but happily home from Preston Park in Brighton, all the way down the A27 to Bognor Regis, and home.

Setting Up

Vicky, a lovely and excellent AGD Brighton Setting-Up elf, setting up.  Vicky runs community arts projects in Bognor and  is in huge demand so I am very lucky to have kidnapped her for the day and  given her an exhibition to set up.  Thank you Vicky Hulatt.
It took the whole of Monday with the help of Vicky, my daughter Lexi, and Storyteller and Soul Midwife Jade Parsonage-Buck.  By Monday night, the whole church had been remodelled and turned into an exhibition space for the A Graceful Death exhibition.  It was absolutely wonderful.  The paintings, the stories, the poems, the films were set up in this glorious old Heritage church, without touching any of the walls (we used chairs, tables, easels, gravity etc.  The walls were fragile and could not be touched by anything), and the exhibition took on a grandeur and dignity which reflected the church entirely.  Outside, we decorated four of the church's A boards in pink and red bunting, and we hung the festive colourful plastic flags one gets with party poppers for kiddies parties from Sainsbury's, in the trees and railings, so that the church, which was well hidden from the road, could be found.  On Tuesday, at 10am, we opened.  On Tuesday at 10.10am our first visitors came.  On Tuesday at 10.15 our first visitors left.  They wanted to see the church and didn't know there was an exhibition on.

10.01 on Tuesday 20 May, the exhibition is informally opened by me.

The Opening Party

Team AGD Brighton hosted, with aplomb, an opening night that could have gone either up, or down.  Of course it went up.  Many people came, including my old friends the South Korean film crew.  They got very lost, and I had to go and stand in the road to help them find the church.  This became quite a theme, many people went to a number of other churches in Brighton and wondered why I had lied about there being an AGD exhibition on.  Many times I had to go and stand in the road and wave people into the little track that lead from Preston Drove up to the church.  The exhibition was formally opened by Glynn Jones, Chair to the Friends of Brighton and Hove Hospitals and Deputy Lord Lieutenant of East Sussex.  A most delightful, interesting and beautifully dressed man, I liked him very much indeed.  The Friends of Sussex Hospitals provided a bar, and took all the worry of providing drinks and nibbles away from us.  Documentary film maker Clare Sturges came all the way from Cardiff for the day which was wonderful.  Clare is working on a documentary film on Soul Midwifery, and is an engaging, intelligent and lovely person, it was really good to see her again.  Sarah Stone from Dying Matters came along, and Rosie Brown from Ehospice magazine came too.  We were also very happy to welcome Colin Matthews, Vice Chair of the Brighton Fringe Festival.  There were professionals and friends, those working in the palliative care field, and those having a passionate interest in it, all coming to support us on our opening night party.

AGD Team Member Rev Canon Peter Wells on the right welcoming people, as they arrive for the Opening Night event.  The South Korean film crew are in the background.  I stand in the middle with my Shoot an Arrow at me I'm a Target dress on.
`The Exhibition

Day two opened.  Day one had seen visitors during the day, some intending to come, and some not.  Some had tracked us down as we were part of the Dying Matters Awareness Week and the Brighton Fringe Festival, and others had read about a nice ancient church in Preston Park and had ambled along to have a look at it's ancientness.  Most of them stayed and were very moved by the exhibition, a few ignored it completely and took photos of the ceiling and floor and asked us what we had done to the church.  The church, I said, has transformed itself for this week into an exhibition on what it means to die.  What is the end of life, and what does it mean to die?  Eeeek, they said and fled.

Wednesday saw our first event, a guided presentation and public discussion on Preparing for Dying.  It was the first of our sessions, and people trickled in tentatively.  We had about half the people we had hoped for. Our speakers for this session were Eleanor Langridge, Dementia Speaker on end of life care, Rev Canon Peter Wells Senior Chaplain at BSUH and Rachel Reed from St Barnabas Hospice in Worthing.  Alan Bedford, former NHS Chief Exec and non exec Director of the Martets Hospice was in the chair.  It was a moving, thoughtful and fascinating session.  Everyone attending learned much about planning for dying, and listened to some very experienced professionals, .

 Thursday's event Supporting the Dying had a good many attending and by Friday, the Communicating with the Dying and Working with the Dying events were very full indeed.  I cannot thank our speakers enough for their time, their insights, their intelligence and their support of the A Graceful Death week.  Thanks to Team AGD Brighton, thanks to Nigel Spencer, Peter Wells and Rachel Reed, we were fortunate to have consultants, doctors and chaplains from the Martlets Hospice in Hove, St Catherines Hospice in Crawley, St Barnabas Hospice in Worthing, Brighton and Sussex University Hospitals and Brighton and Sussex Medical School.  Nigel, Peter and Rachel work within the hospitals and hospices, and arranged the talks and the speakers to reflect some very important topics.  Planning, supporting, communicating and working with the dying.  They also arranged an entertaining and amazing Early Evening Salon on the Art of Dying, Ars Moriendi, on the Thursday at 6pm.  We were treated to a wonderful talk by Rev Robert Easton, Chaplain to Brighton College, on the mediaeval woodcuts that were a sensation then, and from then on until the last century, showing us how to prepare for a true and Christian death.  And, we were entertained by some clever and witty cartoons created by and used for teaching by a Consultant in Elderly Medicine at BSUH, Dr Muna AlJawad.  And on the Wednesday evening, Nigel held an excellent Dementia Information Session.

Thursday's session, Supporting the Dying with, standing, Team AGD Brighton member and Palliative Care Nurse Practitioner from St Catherine's Hospice Crawley Nigel Spencer, Chair Professor Bobbie Farsides from BSMS, Consultant Dr Mark Bayliss from BSMS, and Consultant Dr Simone Ali from Martlets Hospice in Hove.
And the following day there was -

Friday's session on Communicating with the Dying.  Left to right, chaired by Professor Bobbie Farsides from BSMS, with Chaplain Dawn Allen from the Martlets Hospice, Consultant Cathy Gleeson from St Catherine's Hospice Crawley and Consultant Rose Turner also from the Martlets Hospice.  

Some personal observations on the exhibition

One man came into the exhibition and spent a long time looking at everything.  On his way out, he told me he had cancer, and I saw that he was indeed not very well.  He said that he felt kinder to people on his way out of the exhibition than he did on the way in.  At each AGD, there is one person for whom I say, this is the reason the exhibition is showing in this location.  My friend here was that person for this exhibition.  He was smiling as he left, and I felt as I often do while showing AGD, taken out of myself and given a gift from a stranger that could, if I received it correctly, enhance my understanding of life.

I spoke with many people.  I spoke with a man who said he had prepared himself as best he could for his death, including telling his children (all grown and living independently) which was not easy but was a very good move.  He had heart trouble and knew that he could go at any moment, any day.  This man was nearly 80, energetic, strong willed and full of life.  I liked him very much.  He brought his wife along the next day, and I was impressed because I don't think it was an easy place for her to come to.  They did not stay long.

Perhaps the best story for this week was a group of school children who arrived in the late afternoon on Monday when we were setting up.  They were 14 years old.  One fellow came up to me with his friend and told me the exhibition was a celebration of life.  I congratulated him on his perception, and listened as they talked amongst themselves about painting the dying and what it looked like to them.  All the kids read the poetry and asked questions about the people in the painting, and agreed that it was not a spooky exhibition, but it was quite sad.  They left to have a smoke.  When Lexi looked in the book for comments and thoughts, one of them had written, "I am not scared of dying any more. Name aged 14"

The lad who told me it was a celebration of life returned twice to the exhibition, and sat while people viewed the paintings and writings.  He listened to the films and interviews on the TV screen and laptop provided.  I offered him a rock bun towards the end of the week, (Nigel provides the most extraordinarily good rock buns) and asked him why he kept coming back.  He didn't know, he said.  He just understood it.  I wonder now if he had experienced some kind of loss, and had not finished processing it.  He was such a quiet, perceptive and wise youngster.  He did not want to speak much, and he left on the Friday afternoon and did not come back again.  He took my card.  I said if his parents allowed it, I would like to speak to him about what he understood in the exhibition.  I have not heard back from him, I don't suppose I will.


A full, exhausting, uplifting, affirming, sad, loving week.  I worked 14 hour days with the help of Lexi, Nigel, Peter and Rachel, all of whom had full time jobs to attend to as well as doing AGD with me.  I met a lady who had lost her husband many years ago, and looked around without her glasses first.  Then she came back with her glasses and cried.  We talked and she was fine, it was the remembering and the details in the paintings and the words that had struck a chord with her.  An American lady came to the Opening Night and returned each day for all of the sessions.  She was interesting and felt inspired to work with the dying somehow.  She will do so, she was a smart and focussed lady, and was putting all her plans into place to learn as much as she could. By the end of the week, she had already got herself an interview to volunteer at a local hospice.  These are some of the people that make everything worthwhile.  I meet people, hear a little of their lives, listen to what has been their particular story, and I wonder at the resilience of human nature.  Some people carry around the saddest of stories, some people don't.  But they all keep going, and those that turn up at the A Graceful Death exhibition are my teachers.  I have loved showing in Brighton.  I have loved meeting everyone, and I have loved the hearts and souls in the people, the characters, and the drifters that float into my line of vision so briefly in the exhibition, and out again.  I particularly loved the group of tiny school children dressed up as Victorians who were brought into the church by their teachers, also in Victorian costume (I think they were doing some history work at Preston Manor next to us).  I stopped the teachers at the entrance to explain that it was an exhibition of the end of life, and all credit to them, they said it was fine, they just wanted to see the church.  It would have been too late anyway, the Victorian tots were in the exhibition anyway, gaping at the pictures and skipping around pointing at the most graphic of the paintings with whoops of pleasure.  The teachers looked around, paid attention, and left with all their jolly little olden days school kids all clutching literature on painting the dying and interviewing them to show their mummies and daddies.

Aha!  Here we are, Team AGD Brighton.  Left to right, Mandy Preece, Soul Midwife, Peter Wells, me, Nigel Spencer and Rachel Reed.  Perfick.
And here is the final photo of the week.  After the final closing thoughts and meditations on the exhibition on Friday night from Peter, Lexi and I made our presence known.  Again.

Lexi and me as the last visitors leave to go home.  I was asleep in my dinner within half an hour of this photo.
Alan took me out for a celebratory dinner and by pudding, I was barely able to keep my eyes open.  A week later, I am still tired, but so proud of the exhibition, the people who put it on, the speakers who gave their time and expertise, and to you, the public who came and took part.

Next stop, Swansea in late October and early November.

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