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Sunday, 2 February 2014

Connections and Relationships at the End of Life. A Few Thoughts.

I have a thing about relationship.  About connection.  How  do we go about it in our day to day lives? We do what we do and sometimes it works, sometimes it doesn't.  Despite feeling low if a friendship, an affair, a partnership, doesn't work, we carry on because life carries on, and before long we are forming new relationships in whatever form, with whoever we chose, for whatever reason.  The thing is, sometimes we learn from our connections, sometimes we don't.  Often we don't know that we can learn.  We carry on meeting each other, bonding, not bonding, trying to get along, succeeding, failing, becoming bored, moving on, staying close forever and so on.

When someone is dying, it is possible to become very close, for a while, because the ordinary rules of not getting too involved, too quickly, waste time.  The connection that you form when there is limited time, can be profound.  This is what I think, and bear in mind that I am a privileged observer.  I am an artist who works with people at the end of life through creativity. When I meet someone through the A Graceful Death exhibition, we are working towards something.  A portrait, an interview, an article, a short film.  I also do voluntary work with the dying in another capacity in my area, and not only do I meet some very interesting people at the end of life, I observe and learn from some truly excellent palliative care professionals.  The thing that I have found most rewarding and most difficult, is the relationship formed within no time at all with the dying.  I am not a friend, a family member, a therapist, a medic and as such, I am boundless.  I am just Antonia.  There have been  many times when we have by passed  the normal polite conventions of asking each other questions, taking time to get to know each other, being reserved and restrained, we have dispensed with that and gone straight into some very profound talking.  I have had to learn that this is the way it is, and to have the relationship with this person for as long as is needed, and then if required, to move on.  It is a revealing experience.  It tests my strength, my spirit, my love, my boundaries.  It tests my intelligence too;  some of the times spent with people who are dying, shows me the depth of their thinking, and sometimes, I struggle to follow.  Let me describe my last conversation with Caroline, who is a wonderful example of this.

Caroline was surrounded by her friends and her beloved partner.  All the care she needed was at her finger tips, she had terminal cancer, but still she was afraid and, in private, struggling.  One afternoon, I saw her alone.  Oh, she said, Listen to this!  And she began to tell me about time, space, and the connections between the two.  She held my gaze with such intensity, I couldn't look away.  She had a pen and paper, and drew me a diagram to illustrate this revelation that she had had, and I sat with her with a dreadful feeling of inadequacy.  I did not understand a word.  I hadn't a clue what she was talking about.  It didn't seem to matter, Caroline was inspired and when we finished talking, she was happy and I took the diagram away with me.  Not only have I lost that diagram which I regret terribly, but Caroline died just after that visit.  She taught me a valuable lesson, she taught me to just be there and not to try too hard.  She taught me to let go of myself and to enter into the experience and to connect with her, to just do it.  I consider that afternoon with her a precious gift.  A learning curve.  It helped me to know how to do it with others.

Caroline, full of fun and  gone too soon.
Recently, I sat with an old man in his nineties.  He was an elegant, tall, intelligent man, and he began to speak and I began to listen.  When someone begins to talk, to really talk, I never know if it will take time, or be just a few remarks that are not intended to go anywhere.  As we sat together, it became clear that he had quite a bit to say.  We spent a long time discussing what he thought about religions, about how life had changed over the years, and how it was important that he stay alive, fighting his obvious terminal condition, so that his beloved wife was not on her own.  "She needs to go first," he said.  "I have a duty to care for her."  And the most interesting thing was that having been a life long member of the Church of England, he was now most aligned to Buddhism.  "I just don't know,"  he said.  "The older I get, the less religion means to me.  Is there anything after I die?  I used to know but now I don't.  But I see spirituality everywhere around me, I don't know that it continues into anything after my death."  As I left, much later, he said thank you.  He had not been able to spend time talking, and thinking aloud, because he didn't think he could.  "It's nice to talk to someone who doesn't mind what I say," he said.  The funny thing is, I don't remember his name.  I remember his face, his eyes, his words, his presence, his beauty, I remember his wit, his intelligence his dignity, but I do not remember his name.

Sometimes I fall a little in love with someone I am visiting.  The first time this happened was with an lady in her late eighties, who was so full of spirit and wicked fun that visits with her went on for hours and hours.  Not only was she fun, she was noticeably the most beautiful lady for miles around.  Her looks had been her fortune, she had been a model in her youth.  Quite suddenly, she became very ill, and by the time she died, she had become frightened and confused, and though she was tiny to begin with, she seemed to grow even tinier as she declined.  I wanted to scoop her up into my arms, and keep the cold away from her, I wanted to make sure that she saw beautiful things as she faded, and when I was with her, I wanted to hear her laugh again.  Her last words to me were, "Tell me about your love life".  Our relationship lasted only a short time, but it taught me that it is sometimes necessary to give all that you have, to allow the love to show, to let yourself be vulnerable and to learn to let it go at the end, and to move on.  The last part, the letting go and moving on, is something I am still learning.  This lady had no time for formalities.  She needed this connection, she needed it now, and she needed it this way.  She could be truly herself with me, because I had no way of knowing what the official story of her life was.  I took her entirely as she presented herself, and because I knew no better, not having a clue who she was before I met her, she was free to be truly who she wanted to be.  I cried at this lady's funeral, and I miss her still.  But what an experience!  What a lady.  I hardly knew her either.  How amazing.

Another time, I sat with a lady who could not understand why she had not yet died.  She had been given very little time and yet, she was still here.  "Why?" she said.  "I have been prepared and ready to go, I am tired. I thought I would be dead by now.  My friends," she said in her very soft voice from a bed surrounded by flowers and crisp clean sheets, "my friends don't want me to go.  They come and I have to explain again and again that I am not afraid, and that they must not be afraid either.  They cry and ask me not to leave them."  She paused and then said, "That is why I have not gone yet.  I still have work to do to help my friends understand.  When they accept it, I will go."  And she did.  I wonder if her friends recognise the quality of the gift she gave them, to help them by her example of dying, to fear it less and accept it more.

In sitting, visiting, speaking with those at the end of life, we take a risk.  The kind of relationship that we are used to in our daily lives, can be turned upside down by the connections we can make with those who are dying, and who have no more time for testing the waters.  We become close in no time at all, we make ourselves vulnerable because that is how we allow a true connection.  It makes me think of true connections in the busy world away from the dying. It makes me think that perhaps fleeting connections with strangers where we offer a kind word, a gentle look, a gesture of empathy, may do more good than we can imagine.  We are told that we don't know the people around us.  I don't think that we have to.  But imagine the effect of being courteous, kind, thoughtful, responsive to those around us in the streets, in shops, in our lives, just in passing?  I know this is all old stuff, it's not new, but just imagine that you actually had a go?  


News and Updates on the Work Front

And now, to ease your connection with what I am up to at the moment, I will present the following updates in bullet form.  This is my gesture of kindness to you in passing.

  • Jesus on the Tubes.  Remember recently I had a special offer on, Half the Price and Double the Love for Valentines Day?  I now have a healthy batch of  Jesus on the Tubes to do, each with a custom designed Jesus to sit next to the commissioning families at a tube station of their choice.  As most of these are secret presents for someone, I will say no more at the moment, and post a picture when they are not only completed, but unwrapped and put on the wall with whoops of delight.
The original Jesus on the Tube painting.  From this I paint people, families, friends, next to a Jesus of their choice at a tube station of their choice.
  • (Incidentally, I just received another email from a school child asking me about Jesus on the Tube.  The emails I get go like this.  "Dear Antonia Rolls my teacher says I have to do something about Jesus on the Tube what is it?  Why you done it?   I got a question why have you done it and why is Jesus got brown hair sorry I ask but can you tell me what planet you are on thank you mum says I have to go now"  I always reply to these emails, and would love to meet the kiddies who write such brilliant questions.)
    Talks and Presentations. I have three talks to give in the next few months.  I offer myself to talk about the work that I do, and I shall start this year by speaking in London to St Helier's hospital, at the end of this month.  I will be speaking about working as an artist at the end of life, and the stories of the people that I have worked with.  In April, I shall be speaking to the Friends of Sussex Hospices Ladies Luncheon Club.  The lady who booked me said that she had heard that I could be quite amusing.  Would I be amusing for my talk?  Yes I said.   And finally, next month I will be meeting with a Hospice in East Sussex to discuss a new way forward of working with the terminally ill through art and words. 
  • Writing. A two part article that I wrote on A Graceful Death was published by the online journal "ehospice."   
  •  Part One is here - http://www.ehospice.com/uk/ArticlesList/AGracefulDeathPartone012614104152/tabid/10198/ArticleId/8654/language/en-GB/View.aspx#.Uu54p_l_v-q
  • Part Two is here
  • http://www.ehospice.com/uk/ArticlesList/AGracefulDeathPartTwo012714122414/tabid/10199/ArticleId/8655/language/en-GB/View.aspx#.Uu55MPl_v-q
  • In April I will be writing a guest blog for the Dying Matters Coalition.  Fab.
  • A Graceful Death. I have two exhibitions coming up.  On May 10 I am taking part in a Dead Good Day Out in Southampton, which is a day of events, activities, fun, learning on end of life matters as part of Dying Matters Awareness Week.  
  • At the end of May, also part of Dying Matters Awareness Week, A Graceful Death will be showing in St Peter's Church Preston Park, Brighton from 20 to 23 May.  It will also be a part of the Brighton Festival Fringe. Alongside the exhibition, there will be music, discussions, talks, events and as ever, cake. I have, again, a wonderful AGD Team for this event, and we are holding our first major planning event over a fab lunch in Brighton this coming Friday.
  • Swansong Companion. I will introduce this to you today, and write more on it as it develops.  I am looking to work with people who have a terminal diagnosis, on a one to one basis as an Artist.  It is not dissimilar to the work I have done within the A Graceful Death exhibition.  I aim to offer the use of Art - painting, drawing, collage, and Words - poetry, stories, thoughts, recordings, to help express whatever it is that a person with a life limiting condition wants to express.  It will be something to leave behind, to exhibit, to give to someone, to take with them in the coffin, or simply to see what they can create, for the sake of it, for themselves. I see this as being especially relevant to younger people.  Teenagers, children, for whom there is so much to say and very little time.
And so!  That is enough for this week!  Like you, I need a cup of tea and a biscuit.  It is late now on Sunday night, and tomorrow is Monday. I love Mondays.  Everyone goes away to work or college, and I can wander alone from room to room in my slippers and whatever I slept in last night.  My dear friend, the writer Olivia Fane, is coming in the morning.  She is amazingly expert with relationships and I am prepared to be deep and intense from the moment she steps into the house. The nice thing about Olivia is that I can test out my relationship methods on her and get feedback, but our role play usually descends pretty sharpish into gossip about who we know and what they are doing, so the deep and intense thing doesn't really last for very long.