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Sunday, 30 June 2013

On the Myth of Quiet Times in Bognor Regis, and Finishing Dr Kate Ganger's Portrait for AGD

The most important thing Eileen and I wanted to do this week, has not been done.  Let us recap.

On arrival last week, Eileen suggested that we sit together and write down all the things that we have achieved in the last year.  "It is good to remember all that we have done," she said, "it puts things in perspective".

"Well, that's a must," I said, "we'll certainly do that".  And so, this is the shortened version of the week past, that ended up with us not doing it.

Eileen arrived here in Bognor Regis last week, for a rest.  She works very, very hard and is also completing a degree in photography.  She had spent until 4 in the morning the day she arrived, writing a report that needed to be done.  "Welcome!" I said as I picked her up from Bognor Station, "there is a man living in the sitting room, Older Son has staged an aggressive occupation in his rooms where you were going to sleep, and the fridge is empty. You are now on the floor of the telly room and get some sleep because our itinerary begins at dawn."  A week later, we have not found a chink in the back to back schedule of meetings, visits, afternoon teas, long journeys to do things and moving the house around, to sit down and get this longed for perspective.

In the spirit of doing the thing that we have not done, remembering the things that we have done, I shall highlight just a few of the jolly things completed this week.  And it has been a jolly week!  It is true that as far as rests go, it was not a great success, but if getting things done and having afternoon teas and seeing bus loads of people here and feeding them all is as good as having a rest, well, we had a jolly good one.

Eileen and the first of our Afternoon Teas (on  different days)
The first of our Afternoon Teas was in the glorious Bailiffscourt Hotel in Climping.  I was reserved in taking the photograph here!  I took it before we began.  The next afternoon tea a few days later, at Amberly Castle in Amberly, was gone before I remembered to take a photo.  Oh these cream teas, they are served as you can see, on three layers, with sandwiches, dainties, cakes, scones and cream.  I am a stout girl.  I am a trooper.  I can handle this, but if I were to take my mother here, she would not be able to cope.  What do you do if you are not a big eater and want a fancy cream tea?  Make your own at home, I suppose.

We came to this fancy and abundant cream tea via Bridport.  Some important news follows now, so pay attention and get out your diaries.

The Unitarian Church, Bridport.  I like to pretend I live here.
In November of this year, the A Graceful Death exhibition will be coming to Bridport, to the Unitarian Church.  The exhibition will be a three day event with talks on Soul Midwifery, with workshops, and a piano concert by Lizzie Hornby who has composed a new piano piece called A Graceful Death.  Lizzie played Eileen and I this piece last week, when we went to have a meeting at the church with her, and I loved it.  Lizzie, musician extraordinaire, is so clever.  She has composed the music that accompanies the exhibition, and is a truly valued member of the team.  The new dedicated piano piece is based on a heartbeat, on the heartbeat stopping and starting again, and moving in and out of life.  Lizzie will be giving a concert for the opening event on Friday 1 November, so go and put it in your diaries now.  In fact, go and book your train tickets, check the car is free that weekend, and tell your families and loved ones that you are going to Bridport for an end of life knees up, and that someone else must feed the cat for those days.

We shall have a talk by the celebrated Felicity Warner on Soul Midwifery, we shall have an interview with both a palliative care nurse in the community and a cancer patient from a hospice, on both aspects of their experiences, followed by an audience discussion.  There will be talks on what A Graceful Death is, and the people behind the paintings.  I am hoping that Mike, who has been painted recently with Motor Neuron Disease, will come and be a star, and also that Dr Kate Granger who has also just been painted, will come too and be another star.  More about Kate in a minute.  And, of course, we shall have afternoon tea set up in the glorious bright warm huge exhibition space, on the Saturday afternoon.  Did I mention there will be a shop?  There will be a shop!  There will be stalls with wonderful, relevant and special items for sale.  It seems that you should bring the family too.  Get the neighbours in to feed the cat that weekend.  Actually, bring the neighbours and the cat, it's a shame for them to miss out.  (I do have Snowy the Cat in the exhibition;  Snowy died and his owner, the poet and academic Rosie Miles, was very sad and so Snowy joined A Graceful Death).

As this week hurtled on, ploughing through Eileen's rest time as she tried to find small pockets of silence in which to gather her frazzled thoughts, I finished the next portrait for the A Graceful Death exhibition.  Dr Kate Granger is a young doctor living in Wakefield.  Newly married, qualified and passionate about her career in medicine, Kate was diagnosed with a cancer that is terminal and swift. Instead of lying down and dying, Kate decided to continue to work and has used her knowledge, her insights and her incredible energy to help educate and change end of life practice in hospitals.  Kate has been, and is, terribly ill, and has endured much difficult treatment, but has still managed to raise vast amounts (I mean thirty thousand kind of amounts) for Yorkshire Cancer Centre.  Kate is so young, only 31, and has managed to do so much practical and long lasting good for those in her hospital, and in the medical profession itself.  It is sobering to look at the painting of the young and healthy looking woman in the painting below, and to know that she is dying and could die at any time.

Dr Kate Granger, just joined the A Graceful Death exhibition.

I am so thrilled to have Kate in the exhibition.  She said of herself in this painting that she liked the combination of her looking happy and contented but introvert and ever so slightly frail.  Behind Kate is the top of her wedding photo, her husband being one of the most important things in her life.  The wall paper is significant; she and her husband had bought it and had never got round to hanging it.  When Kate first came out of hospital from some very exhaustive treatment, her husband had put it up for her return.  Eileen and I have filmed an excellent chat with Kate, which will go onto our AGD Channel on You Tube as soon as Eileen can get a bit of down time away from me.  Bless.

(The above photo was taken by Eileen. Part of her quiet and restful week here, is to photograph all my work as I do it, from a tripod she has to set up, in a makeshift studio space she has created. The result is a stunning photograph from a dedicated professional and perfectionist.  I hope Eileen had a sit down afterwards.)

Giant Boy found a new toy this week.  Fancy Girl and her best friend came for the day to Bognor, to rest and catch up and eat, with the best friend's 18 month old and 14 week old daughters  This was a very good idea, because Eileen needs to rest, and we thought that two very small babies and lots of cooking would really help her.  Someone handed the 14 week old to Giant Boy.  "Here," they said, " have this," and passed a tiny gurgling bundle to him.  Giant Boy sat down and had a good look at this hot, squirmy, dribbling little creature, and fell in love.


"What is it?" said Giant Boy.  
And now.  Today Eileen is going home.  "I see you are rested," I said to her.  "You will be delighted that I have a picnic planned in Lewes with more friends, let's get dressed and let's go.  Hurray."  We are going to visit an old friend from our past, in his cottage in Lewes.  From there, after much mirth and eating, I will put Eileen on a train home, where her own flat will never have seemed more appealing.

I think that on our two hour journey to Lewes, Eileen and I will use the time to list all our achievements over the past year. To get that much needed perspective. "Wake up Eileen!"  I will say, "write notes!  These are my achievements, listen up, here is what I have done."  And Eileen will do so, because she is such a kind and caring friend.  When it is her time to list her achievements, top of the list will be "Going home.  I managed to go home."

It has been a busy week.  It has been a lovely week, and Eileen has enjoyed it as much as I have.  The perspective that I have gained just in the last few days is that I have good friends.  I have a very good life, I am delightfully happy, and that I must admit that though I can offer much fun and games, I cannot really, though I may think I can, offer quiet times to anyone.


Saturday, 22 June 2013

On chatting to myself, and finding it a pleasure.

This week, we have a scoop!

Antonia Rolls, Artist Extraordinaire in her very early life as a fairy.  Note the expressive finger.
I am very lucky to have the chance to sit down and conduct an interview with myself.  It is not often that I can catch myself, I am so very busy rushing here and there, and it is often said of me, "... she's awfully busy, isn't she?"  Today, a stroke of luck has enabled me to catch up with the busy Artist Extraordinaire, and I am delighted to say that I have agreed to give myself an exclusive.  Thank you, Artist Extraordinaire.

Artist Extraordinaire - No, no, thank you!

Me -To begin with, I feel a vacuum in the blog world.  What happened to last week's blog?

AA - Oh did you notice?  How wonderful!  I went to Ireland for a week with Giant Boy.  We went to stay with friends in their cottage by the sea in Arklow, Co Wicklow, for a breath of fresh air to our hearts and souls.  My dear friends let me go every year to stay with them, and don't seem to mind that I follow them around like an adoring puppy until I feel great again, and go home.  This year, we were aware of the passing of time.  In the past, I have brought each of my children as they arrived, and introduced them to this wonderful family and their seaside cottage. As they got older, their friends and cousins began to join us.  Add to this my friend's children as they started to arrive, plus their friends and cousins, and you get the picture.  For the first time, this year, there was just me and Giant Boy, and my friend, her husband and their children. A tiny gathering (comparatively).  But it did mean that my dear friend and I could get on with our reading and lying around and eating.  This year too, there were wild horses around the cottage, and this is what I saw at 5am on my first morning.

A Horse.  "Morning", it said.  
We had very little internet coverage, so I just lay down on the sofa with a book, and let all thoughts of blogs, Facebook, emails and answering my phone the instant it rang, disappear into the mist and howling winds outside.  And so, there was no blog.

Me - Fascinating. And now that you are back, what are your plans for today?

AA - My plans for today!  And tomorrow!  And for ages and ages in the future are to rush about and do things!

Me - What, specifically, are you doing this weekend?

AA - Well, in a couple of hours, I am collecting my friend Claire for lunch and a catch up here.  Claire helps me with A Graceful Death, and is indeed being painted as we speak, to be part of the exhibition.  Then I am continuing to clear my Older Son's room out so that I can rent it to help pay my mortgage.  Tonight, Photographer Extraordinaire, Eileen Rafferty comes to stay for a week, so that she can rest.  Tomorrow, I am drumming in Eartham Woods with Sound Therapist and General Brilliant Person Sarah Weller.

Me - You have lodgers too don't you?  Is it possible for Eileen to rest in your house?

AA - Eileen is made of stern stuff.  She is used to resting here.  Alongside my 16 year old son Giant Boy who lives here with me, and my often visiting other son Older Boy, and my sometimes visiting daughter Fancy Girl and her boyfriend Mike, I do have lodgers. I have a Polish lady and a Sri Lankan man living in various parts of the house, and, I even have a silent Polish man living in my sitting room at the moment.

Me - You do?

AA - Yes, he flies in from time to time to work, and tends to stay on any floor space I have.  I could offer him the under stairs cupboard, and he would be happy, just as long as he doesn't have to talk to or see anyone.  As it happens, the sitting room was free so he has gone in there.  I know he is still here because I saw his change of clothes, a single teeshirt, on the sofa, and I hear the occasional noise in the dead of night as he creeps into the kitchen to microwave a single sausage for his dinner. He is self sufficient, and nice, and I call him the Silent Pole because he is so very elusive and invisible.

Me - What will you do with Eileen when she comes?

AA - I had considered giving Eileen the cupboard under the stairs, but Eileen would notice that it wasn't the sitting room.  The Silent Pole is in the room Eileen usually goes in.  So, I am making a lovely little space for her in Older Son's little side room.  He has a nice big bedroom and a little side room, which I am clearing out, as I have said, so I can rent his rooms in order to pay my mortgage.  He went to a party in Brighton last night so that made it easier.

Me - And Older Son, does he know?

AA - Possession is nine tenths of the law, and we are all very fond of Eileen, so waking up to find her in our side room, or our wardrobe, or in fact anywhere in the house, is considered a treat.  

Me - Tell me about your studio at the moment.

AA - Ah.  My studio is a place of struggle.  I love it, it is created to serve me in order to do my work, but it is a place of hard work and of making things happen.  It is a place of painting, of thinking, of writing, of planning, of gritting my teeth and getting on with things.  It is also a bolt hole, where I can hide.  I like nothing more than to have a painting on the go and to plug my earphones into You Tube to listen to hours of rain and thunder sounds.  I started with ten minutes, and like an addict, I have become more and more extreme.  I have even found twenty four hours worth of rain and splashing, but that seems a step too far.  I am afraid of listening to something so relentless.  I have only tried the ten hours sound track, and never finished it (my concentration span runs out after a couple of hours).  Only hard core hopeless cases go for the twenty four hours and find, to their horror, that after the twenty four hours of storm sounds, there is no thirty six hour sound track of thunder and lightening and cars swishing through puddles.  There is no place to go then.  I don't want to get that bad.

Me - What have you done recently in there?

AA - I have just finished two paintings of a dear friend's two mothers.  Gail Martin Stevens, Managing Funeral Director of Elizabeth Way Family Funeral Services, has a birth mother and an adoptive mother.  I have painted portraits of both mothers when they were young, and have just finished painting them when they were much older.  Gail is a Buddhist, and I have painted the images in black, brown and white (sepia effect) and added what I thought were Buddhist shades of blue and pink to each portrait.  The lotus flower links the images to Buddhism, and the white lotus flower represents "the state of spiritual perfection and total mental purity".  I am very taken with the sadness, the love and the vulnerability of both these ladies, and the choices that they made.  They are no longer with us, and Gail has been given life by her birth mother, and a future by her adoptive mother.  Both these mothers are done with this world, both have lived and learned, and have left their legacies in Gail, who is now a grandmother. It is good to honour and remember them.

Two mothers when young 

The same two mothers when old
Me - What is happening with the A Graceful Death exhibition and project?

AA - I am constantly painting and planning and organising shows and talks.  I have nearly finished the portrait of Kate Granger, the 31 year old doctor who is dying of cancer, and is using her illness to educate us all in the process of dying.  The painting is actually very good, I will finish it and get Kate's approval before making the image public.  I am beginning to paint the amazing Claire too, who I met when she was in a Hospice dying from cancer.  Claire did not die, and is a remarkable woman with a remarkable story to tell.  

But holding together all the strands of the exhibition, painting the portraits, filming and writing about the people, holding the relationships formed, understanding the experiences of being with the people I work with, is very hard to do.  I hold the whole exhibition in my head, and sometimes I don't know what to do with it all.  It feels such a monumentally important piece of work, it carries so many hearts and souls, it is full of the knowledge of life and death and it is built on love, honesty, very hard work, and kindness.  

So, I have the office part of my studio where I plan my events.  And I have the painting part of the studio where I paint.  Each is separate and each is linked.  Sometimes I feel it is too big for me, other times, I feel that I am carried along by its bigness, and it does not matter.

Me - You seem to feel the responsibility very strongly.  Can you cope?

AA - I do feel the responsibility.  I started the project.  I lost Steve, and out of that experience came the A Graceful Death exhibition and the feeling that I could, and should, work with those who are dying.   I ask deeply personal questions of my sitters about their life and death, I make them public by painting them, and I take the time I spend with each of my sitters to heart and sometimes feel overwhelmed by their strength, their vulnerability, and their kindness in joining the exhibition.  I can cope, but I am constantly made aware of my own mortality.  I do have a network of good friends who work with the end of life, who keep me grounded and wise.  It is exciting too, that the exhibition, and the raising of awareness of end of life issues, now includes new working projects in collaboration with these excellent people that keep me grounded and wise.

For example, I am co-hosting the showing of a film called "I Am Breathing" http://www.iambreathingfilm.com/  about a young father and his struggle to live and actually breathe, with his Motor Neruon Disease.  The MND Association as asked for as many people as possible to host this film to raise both funds and awareness of the disease, and my Sound Therapist friend Sarah and I are making an evening of it on the 6 July here in Bognor (in the under stairs cupboard if I am not careful).  We will offer the film, some food and a discussion for £10 per person.  All proceeds go to the MND Association.  Contact me on antonia.rolls1@btinternet.com if you would like to come.

Me - It seems that your life is not all about painting then.

AA - I have found in all my work as an artist, that 70% of my time is spent organising, emailing, talking, travelling, doing all things connected to painting, while only 30% is spent painting.  Before starting a painting, I spend time working out what would look best, and much time talking to the sitters.  And when I am actually painting, I spend huge amounts of time gazing out of the window and thinking.  In fact, I would say, that the hardest thing I ever do, is paint.  I am absolutely compelled to do it, I have set my life up around doing it, but it is not easy.  Sometimes it physically hurts me.  But it is what I am here for, and I would die half a person, quarter of a person, if I did not do it.

Me - I see the time ticking away.  I believe you have to and collect Claire, and to prepare Eileen's room and do a hundred and one other things.  Thank you for stopping to talk to us.  This really has been a scoop!

AA - No no, thank you!  Before I go, I want to post a little photo of the bracelet that I made while staying with my dear friend in Ireland.  She is so creative and talented, she is inspirational.  Her latest thing is to create metal stamped jewellery, and she taught me how to do it.  I made a limited edition, puffing and panting, of Affirmation Bracelets. Most of my efforts to do this ended up with wrong spellings and sentences like Yes Plose instead of Yes Please.  That is why they are a limited edition, only a few of the bracelets ended up making sense.


And now, it is time to rush off and collect Claire.  Lunch Claire?  Oh, yes plose.

Sunday, 9 June 2013

On Being Only Human and Woken Early With Ketchup and Tea

It's my own fault.

I have been getting up very early to cycle around the by lanes and country roads in Bognor and surrounding areas, and boasting about it.  "Guess what I do?"  I say to people as they are introduced to me.  "I cycle," I continue before they can reply, "at about 5am every morning because I love it and there are no cars and I am back and bathed and ready to get Giant Boy up by 7."  The sub text is "Beat that."

Road signs from an early morning bike ride  around  Bognor.  This sign tells us to beware of ducks on bendy roads

But I am only human.  The early morning bike rides are beginning to make me very tired, but I feel duty bound to continue.  Recently they have been slacking, but I have not wanted to tell anyone in case they stop thinking I am amazing.  As I lay in my bed last night, I decided it was at last time to sleep late, to give in, and abandon any thoughts of cycling in the morning.  I would not even wake in order to have a painful debate about whether I should go or not, and then not go.  I would simply say to myself as I closed my eyes and drifted off to sleep, that cycling is off, it is cancelled, it is kerput.  To emphasise the decision, I closed my curtains.  Normally I wake with the light, and like it that way; closing the curtains was a statement of intent, that I would slumber late, until the withdrawal from tea kicked in.  It was all so simple and so glorious.

I left Giant Boy with friends downstairs.  How sweet, I thought, my baby has some friends to play with.  Giant Boy is 16 and six foot six inches, he doesn't do very much at the moment, he is working out how he got this big and tends to lie down a lot.  Having friends over meant he was feeling a bit more normal.

At 5am I was woken by a vigorous knocking on my door.  Giant Boy was outside, a beaming smile on his face, cycling shorts on, a tray of food in his hands, and another on the floor beside him. "Arise, Mother!" he cried," I have brought you breakfast, and we shall go riding together!"  His face said "Love me, pat me on the head, throw me a stick, I want to play" and my face said, "Where is God when I need him?"

We sat on my bed, the curtains drawn, and he told me that he had not been to bed yet.  He had, he said, looked out at the rising sun and felt such peace and wonder, that he decided to join me for my early morning bike ride.  So he made us breakfast, and looked forward to an early morning jaunt, bonding with his showy offy mum.  He handed me my tray, with a pot of tea, a doorstep of toast and butter, a flapjack and some ketchup.  "You can share my soup", he said, and on his tray he had a bowl of tomato soup, some scrambled eggs, some pasta with cheese sauce, some added spicy salsa dip, and some lettuce.  "Where have you been if you have been up all night?" I asked, concerned and confused, and received no reply.  He had keeled over and was asleep on the pillow next to me.  I put the trays on the floor, covered him up, and got back into bed.

It is different with someone sleeping next to you when you had planned not to have someone sleeping next to you.  Fitfully I dozed, wondering how it was that I was no longer resting and feeling I was having a treat, wondering what it was about having a giant teenager snoring next to you with bits of lettuce stuck to his teeth in the very early morning, that changed the atmosphere.

And then the phone rang.  Oh, I thought, an early morning call means trouble!  It is Other Son, who is known for getting into pickles with last trains to anywhere, and I braced myself.  "It is your Mother!" said a happy voice at the other end of the phone, "I know you get up early to cycle and I am up at dawn this morning myself, so I thought I would call you for a long and detailed chat and bond with you in the early hours."

Culprits.  Looks like they planned it all doesn't it?  Giant Boy and Grandma.  Butter wouldn't melt in their mouths. 

And so, today is different to how I imagined it would be.  Isn't life like that?  Mother is happily doing her thing ("I slept so well", she said, "twelve hours of peace and I feel so wonderful now") and Giant Boy is upstairs in my bed dreaming of poetry, dawn, pasta and lettuce, and being nice to his mum.  I, not being beaten, am cycling to my friend Claire's house, where she will tell me it isn't my fault, and that I am still amazing, and that cycling 300 yards to her house is just as good as having done a few miles at dawn.

Saturday, 1 June 2013

At the end of the day, Love Handles! And an interview about Motor Neuron Disease.

Today, Fancy Daughter and her boyfriend, began a two day extravaganza of odd jobs in my house.  I gave Fancy Daughter my debit card and a list of things to be done, and told her that she could choose the colour of the bathroom as I hadn't time to think.  Mend the lock and handles on my studio too, I ordered them, and you decide what kind of lock.  Fancy Daughter put on her lipstick, dusted the Boyfriend down, and went off to B&Q with a glint in her eye, to decide what was best for me.

Fancy Girl and the Boyfriend starting work in the house in a serious and modest manner.
"Go", I said to them both, "and do your thing.  Today I am deeply busy and cannot be distracted, not even for a moment."     

Eileen Rafferty, photographer extraordinaire and dear friend, is staying this weekend so that she and I can film a conversation with Julia and her family, in their house in Dorset, for the A Graceful Death exhibition and project.  We arranged to go today, despite it being very hard for Eileen to get away from London, because Julia is deteriorating fast and speech is becoming more and more difficult for her.  Julia has Motor Neuron Disease.

I have just finished a painting of Julia, and in the time that it took to do the painting, Julia's health has declined steadily.  Julia has still much to say, and has the support of her wonderful husband, Barry.  Both agreed to be filmed talking, and to show us what it is like to have, and be in the presence of, someone with MND.  Eileen filmed about one and a half hours of the most profound and moving conversations, revelations, laughter and tears.  We were joined by Julia and Barry's twelve year old daughter Elizabeth, who has found the process of her mother's rapid decline both frightening and unbearable.  She has not been able to talk to her mother, not knowing how to, and finding Julia's decreasing ability to speak and move, confusing.  I think Elizabeth has found it easier to keep away from her mother, and to keep her feelings to herself. Despite having much support from her school, Elizabeth has been deeply troubled and has felt isolated and alone. Julia has watched this and has been unable to instigate anything, and as a mother, has longed to talk to her daughter and tell her that nothing that Elizabeth says to her, is too much for her.  Elizabeth, as she spoke, revealed that she did not want to upset her mother by telling her how she felt.  She felt that she had to be strong for her mother.  I think too, that Elizabeth, understandably, does not know herself, how she feels.  She does not like to see her mother's decline.  It is difficult, said Elizabeth, to get up in the mornings.  She does not want to see more evidence of the MND by the time she returns from school.  It frightens her, and she does not understand the way the disease is changing her mother, her family, her life and causing everything that was safe, to become unsafe.

Julia may not be able to speak clearly any more.  She may take a long time to say a few words, but she is still a mother, a loving and devoted mother, and a mother who watches and understands her children, even as her body is no longer working for her.  I was moved by Julia's love and understanding today of the fear and loneliness of her daughter.  There were many, many heart rending tears, and many frustrating attempts to make herself understood.  And I was so touched by the simplicity of the need for Julia to have her daughter come to her and talk, and by Elizabeth's pain and fear of her mother's illness taking her away from her.  And too, by Elizabeth's obvious love of, and pain at, loosing her mother.

Julia's husband Barry is patient and kind, supporting Julia and listening to Elizabeth.  Barry works hard to support the whole family, they have an older son too, and Barry does his best, and more, to understand, look after, and be there for all of them.  But it takes its toll on him too.  He appreciates and needs the help of the many professionals who come daily to help with Julia's needs, but he feels that his family is somehow slightly out of control and no longer private.  It is hard, despite the gratitude he feels for the help and advice that they receive, it is hard to see his wife so helpless and needing round the clock nursing from so many different people, some of whom are total strangers. The conversations that we filmed today will show how much time we need to give to those with Motor Neuron Disease, and their families, how it is essential to take the time to communicate.  I watched Julia, clever, intelligent, wise Julia, point out letters with her eyes in order to spell out a word when she could not get her mouth and throat to say it, to tell her daughter that she understood how frightened she was.  

Here are some of the things that Julia says to remember with someone who has Motor Neuron Disease
  1. Be patient. Be Patient.
  2. When you don't understand what she says, tell her.  She knows when you don't understand.
  3. Let her finish what she is trying to say.  Don't finish her sentence for her in a hurry and think you have got it right.  Don't guess what she is trying to say without asking if it is correct.  Let her speak.
  4. She cannot move, she is dependent on others for everything, but her mind is as sharp as ever.  She is still in there, thinking as fast as ever.  She is not mentally disabled too.
  5. Don't be afraid of her tears.  They are part of her and they need to be expressed.  (Sometimes Julia cries deeply and loudly, and Barry is gentle and loving and so very kind with her).
  6. Once again, be patient.  Give her time, let her have the time to speak, to communicate.  Take time to be with her.
Barry and Julia.  This photo was taken in March.  Now, in June, Julia has lost a good deal of weight and has a neck brace, a PEG feeding tube directly into her stomach, and  an oxygen mask for a much of the time.  I am tempted to paint her again, she is such a beautiful and wise soul.
Eileen filmed the conversations with her usual delicacy and discretion.  I prepare questions in advance for these interviews, but rarely have to ask them.  Today, the family were incredibly honest, articulate and brave,  talking about the way that they are living with, dealing and not dealing with, Motor Neuron Disease.  It is an absolute lesson to me, who knows nothing about how to live with a terminal illness, of the reality of life, death  doing the best you can with what you have.  It is difficult to say what I learned from being with this family today.  I was shown something far bigger than me. This is a normal family, an every day family, dealing with dignity and grace, sadness and patience, with something not normal at all.  They are dealing with the steady, visible, unstoppable terminal decline of Julia, mother, wife and much loved lady. 


The painting of Julia for A Graceful Death, finished a few weeks ago.

I have asked Elizabeth if she wants to include her drawings in the A Graceful Death exhibition.  I have not seen them, but she says that drawing helps her to get through difficulties.  I hope she does, her drawings will be very valuable and very good for children who are going through the same thing.

And so.  After two hours of filming, Eileen and I left to go home.  Everyone was exhausted.  Eileen will edit the film and it will be made into smaller films, maybe more than one, and put up on our A Graceful Death channel on YouTube - http://www.youtube.com/user/AGDChannel.

Meanwhile, back at home Fancy Girl and the Boyfriend were tackling all my odd jobs and bits and pieces around the house.  Remember the request from me to put a new lock on the studio door?  And new handles?



I got, it seems, love handles.  

And the bathroom is painted hot turquoise.

And they stopped during the hot afternoon to set up a large barbecue, which took them far longer than they had anticipated.  There was so much to eat that it cut into the time spent doing the bathroom but hey!  That's OK because they washed up!  I thanked them, and searched in vain for any of the left over food from the barbecue.  "None left!" they said gaily, "except for a lettuce leaf which you and Eileen can share between you."   I thanked them again, and putting the lettuce leaf into the bin with a merry little hum, put the kettle on and got out the chocolate.