Saturday, 10 August 2013
The first day of eternity for Julia and the look of true love.
Today is the first full day of eternity for Julia with Motor Neurone Disease, who I painted and interviewed for the A Graceful Death project just a few months ago. Julia died yesterday at 6pm, and just as she died, she opened her eyes and looked at her husband. It seems to me that if ever Julia gave a gift, it was at that moment, to open her eyes and look directly at her distraught husband.
When I spoke to Julia's husband, Barry, on the Thursday, he told me that there was very little time left. "I thought she had gone last night," he said, his voice breaking. The MND had rapidly become worse and Julia had become unconscious and unresponsive within days, and no longer left her bed. Barry spoke of how he was watching over her day and night, with the help of carers and Macmillan nurses, he did not want to leave her, he did not want to let her down, and he did not want to lose her. When we finished talking, I was terribly agitated, I couldn't settle to anything, I felt that I needed to go now, right now, and be there. But I couldn't, I had made plans for Friday, and Julia was well taken care of. I had promised to come back and see her in August, and now, unless I left right now, I felt, I would be too late.
In the studio, I had been refreshing Julia's portrait (with so much showing, the paintings get scuffed, and need to be touched up and renewed every now and then) and so I went to speak to it. "Julia," I said, "please hold on until tomorrow. Please wait until I can see you. Please let me say thank you and let me tell you how important you have been, and are, for me and for AGD." And I had to leave it at that. But I was very moved by the news, and found myself tearful and distracted. I had formed such a liking for Julia, she moved me deeply. She was the most normal person you could hope to meet, she had no huge ambitions, she did not need lots of fuss and attention. She was a mother, a wife and a friend. She wanted love, friendship, a happy and contented family. Julia had beautiful skin, huge expressive eyes and a wonderful ready smile. Somehow, she had been chosen by life to get Motor Neurone Disease. Somehow, Julia who was married to a modest, kind and loving husband, had two very loved children, who didn't ask for much, somehow this Julia was selected by fate, to contract MND and to become imprisoned within her body as it shut down, and within a year and a half, to die upstairs in her bedroom, leaving an utterly distraught family for whom she was everything.
Julia was intelligent and honest. I asked her questions for the AGD portrait, so that people would know who she was and what was happening, and Julia was utterly straight forward. Mandy, my dear friend and Soul Midwife who worked with Julia and introduced us, asked Julia what advice she would give. "Do not do the housework," said Julia with huge difficulty, this was before her speech completely left her, "when you can play with your children." Sometimes when we spoke for the AGD project, Julia would break down and cry terribly loudly, because she could not hold her husband in her arms, and could not physically gather her children to her any more. But she told us that she needed to cry like that, not to be alarmed. She needed to let it out. Oh Julia was so strong and so wise. When she cried like that, I needed to be reassured that I had not crossed a boundary from which I could not come back. She was very firm, "No," she said, struggling with her words and her breath, "it is the truth. I need people to know this." I wished that I had known her in another time and place, I thought, we could have been friends. I think I know what she is saying, and I think I understand what she means when she tries to articulate how things are for her as she waits for her body to pack up and bit by bit, stop working. Oh I thought she was a lady far beyond me, and I was moved and grateful to have had her attention. She was, and Mandy thought so too, a profound teacher.
So I left Bognor yesterday afternoon, driving the one and a half hours to Julia and Barry's house, hoping that I was not too late. At the door, Barry told me that she had only hours left. "Come up and see her," he said, "she does not respond any more at all, and her colour is going. Her breathing is erratic, and she is not expected to last long." I followed Barry upstairs to the special bed next to their double bed and saw a pale, still and unconscious Julia, breathing very irregularly and erratically.
I was moved so much by her stillness. I was moved utterly by the bed next to hers that Barry had slept in when he could, when someone was able to wake him if he was needed. But I was more moved by Barry himself than anything else. He is a private, practical man, a family man, quiet and thoughtful. He has held his family together for over a year now with this enemy that has taken over his wife, watching over Julia, loving her, caring for her, waiting with her until now, and now, here was the end, the moment that they knew would come. Today, Julia would leave him forever, and the next phase of his life would begin, the next phase without her. It was so hard not to cry, seeing how brave he was, helplessly watching his wife of many years, on the very last bit of a journey that no one could stop nor help with.
I stroked Julia's hair, and gently stroked her cheek. I told her how important she was and is, and thanked her for all her patience and time with me. Julia has nothing to learn from me, I have everything to learn from her. I thanked her for teaching me about strength, communication, dying, the pain of leaving a family, and the pain of not being able to tell them that she understood everything, that she knew exactly how badly her family were feeling. And that she missed them so much, sitting in her chair unable to move and then unable to talk, and then unable to respond at all. I thanked her for allowing me into this time in her life, and for making my understanding just that fraction better. I called her darling, and held her hand. It was very, very hard to do this, I just wanted to cry. But there was no time, if I cried and could not talk, there was not time to tell her these things, and so I made myself concentrate on talking.
Barry came upstairs and I went downstairs, leaving them alone together, and I sat in Julia's chair in the sitting room, watching Top Gear on the TV with the sound off. "This house is waiting," I thought. "This house is waiting for Julia to die, and everything is normal but it is also far from normal. This is such a sad time and what is to be done? Waiting is to be done. That is all. Wait and watch." And I continued to watch Top Gear and wonder what they were all laughing and talking about in the silent programme on the telly.
Barry came running downstairs. "I think she has gone", he said. I followed him and his son upstairs. Julia was lying completely still, her face relaxed, and with no sound of the strange breathing. And Barry said in tears, "she looked at me. She opened her eyes and looked at me."
We held Julia's hands, one each side of her, and between his tears and his pain, Barry talked of her, and asked if she really was dead. It is hard to know, sometimes someone newly dead really does look as if they are asleep. Sometimes, they look as if they will take another breath, and sometimes, you think you see their chest move. But Julia had that waxen look of death, and her face had relaxed into the most peaceful expression that was not possible when she was trying to breathe a few minutes earlier. When Barry called the doctor after a little while, he was brave, courteous, he said that he thought his wife had just passed away. What a call to make. This was the first official admission that it was all over. We waited by the bedside holding Julia's hands until the doctor came. I held Barry too, which I would not have done in any other circumstance. I wanted to help him hold himself together. I wanted to let him know that another human was there, and that he was grounded and safe, and even while he was watching Julia in pain and disbelief, I wanted to give him some connection to love and warmth where words simply would not do. I was worried that if I didn't hold him, he would burst into a million atoms and be lost in the room forever. When the doctor eventually arrived, I went downstairs to make some tea.
I decided then to stay next to Barry and watch over him until someone came to support him. And so I did, until some family arrived, and then I slipped away.
My head was so sore on that journey home. I was exhausted when I arrived in Bognor, and upset, and unsettled. I did not sleep last night, and I have been tearful today. Julia's portrait is in the studio where I left it, and she looks out at me with her lovely smile. On the 3rd of October I will be talking about AGD and the work I do, mentioning the Motor Neurone patients in particular, for the Performance in Ethics series at Brighton University Medical School. She will be a most important part of this talk, and I will make her journey worthwhile. Now, as a treasured and honourable member of the exhibition, I will make sure everyone that comes knows of her amazing inner strength and of her absolute ordinariness, which makes her one of the most profound teachers I have met.
I will leave this account with the following thought.
Last night, I spent time in a house where housework had gone by the by in recent months. The players in this house were a lady in her forties, no make up, no frills, in a coma, dribbling and unable to draw breath. And a man in his sixties, unassuming, exhausted with a year and a half of constant care and in pain with the knowledge of losing his wife. So not, as we may say, at his best. The myth that our world perpetuates that in order to be loved, you need to be thin, smart, sassy, young and rich, is blown to pieces by the love in that house last night. Here was a man who loved this lady in the coma with all his soul, and could not bear to think that he may let her down in any way. And the lady in the coma, was part of this dance. Her love for this man caused her to cry with feeling, a few months ago, that she could not hold him as she wanted to. It was to him that she looked as she died, it was this man who she, too, loved with all her soul, that she wanted to see at her very last moment. Love is a very powerful and deep thing. It is not superficial and external. It is built with shared experience, with history and knowing and it is accepting, enabling, empowering and I have seen how real, true love, looks.