Two Difficult Things To Anticipate.

I'm struggling with anticipation on two levels.  Both feel very big and both are taking up my thoughts.

I am aware that anticipation is something we all feel, whether good or bad, and that you will say "Ah, yes, I feel anticipation too.  Today, I anticipate my first day at work."  Or it may be that Auntie Flo is coming to stay and bringing her budgies.  Or it may be that you are on a diet and anticipate a blow out on pizza and chips later this afternoon as a reward for loosing a quarter of a pound.

It may be that you anticipate the death of someone you love, it may be you anticipate bad news to do with your health.  Or something good, like tea with the Queen, or the birth of a new baby.  Or that your mortgage gets paid off this week after your boss realises you need that pay rise backdated to 1985.

Here is what is on my mind.

1. I open with my A Graceful Dying One Woman Show on 30 May
2. My brother Dominic went into the hospice yesterday and is facing the end of his long journey with cancer

The One Woman Show

Wow.  Am I really doing this?  it appears so!

I am writing, with the help of a dear friend Tasha Yarker, and performing the A Graceful Dying One Woman Show and at the time of deciding to do it, thought it seemed an excellent idea.  It is an excellent idea.  There is much to say about the subject!  I am inspired and moved, I am amused and challenged by the experiences I have had with people as they do their dying.  I have seen much to make me think about how I live, and about how I die, and about what it's all about, this business of being alive and facing the ending of all things at some point.  There will be stories, thoughts, images and film from the people I have met and travelled with on this end of life journey, and I will challenge and reassure you in equal measure. I am excited, delighted and looking forward to doing this, and am sure it will be all that I hope for.  

Here is some information on the show for you - 

“I don’t know how to die.  I am watching you to see how you do it.  In the end, we just have to live”

Antonia Rolls, Artist Extraordinaire and soul midwife, doesn’t know how to die. 

A Graceful Dying is about one woman’s quest in middle age to prepare for her own death, may that be far in the future, by working with, observing and questioning people who are actually doing it.  For the last seven years as part of her work as an artist and a soul midwife, Antonia has interviewed and painted portraits of people as they have done their dying.  A Graceful Dying One Woman Show is about preparing for the end of life by asking the dying themselves how they are doing it.

Frank, unsentimental, sometimes amusing, Antonia introduces stories and images of people who have shared their dying.  Powerfully moving and uplifting, the show shines light on how we choose to live.  To suggest we wake up and take notice of what life we have. 

To book tickets for the A Graceful Dying One Woman Show, a direct link to Sweet Venues can be found below -

http://sw.tickets.red61.com

Simply scroll down to the A Graceful Death show title, click on it, and your address bar will show the link that goes directly to it

And, It's a bit cheaper to book through the venue rather than through the Fringe box office - the commission is only 3%, whereas the Fringe commission is 6.5%+VAT and their booking fee is just 50p per transaction, whereas the Fringe is 90p per ticket.

Dominic

My youngest brother Fr Dominic Rolls went at last into the hospice yesterday afternoon. About a year ago, he left his parish in Dorking to move to Edinburgh where he would rest and concentrate on managing his cancer.  I think he both believed he may recover and also that he may not recover, and so just in case, he chose the hospice up there to move to at some point in the future when he may need to.  

Though there was always the slight hope that his cancer would continue to be contained, there was also a growing acceptance that it would not.  And that perhaps the hospice was really going to be the place he would end up in.  That growing acceptance was strangely subtle; it was always about his going there, yes, but always too about some time later, in the future.  It felt as if it was never quite going to be now.

Yesterday, I had news that Dominic, who has been deteriorating rapidly in his beautiful rooms that he had created in Edinburgh to give his mind and body and soul comfort, his rooms with their high ceilings and walls painted the most exquisite shade of blue, with their sash windows letting in so much light and the framed photographs of each member of his family and the antique carved wooden bed that he inherited from his grandfather, yesterday Dominic finally asked to leave those rooms and go to the hospice from where he would end his days.  It was very hard for all those around him.

Edinburgh is a long way from Bognor Regis.  It is a long way from London, from Brighton and from all of us, his siblings and his family.  But we are finding our way, each of us, to the hospice this week, to somehow say goodbye to Dominic, who we cannot believe is really leaving us.  I am travelling up tomorrow to stay there until the end.  This is going to be a tough one.  This death will be so much more about loss and things not being in the right order than usual, probably because this death is so personal.  I remember Dominic being born, I was three at the time, and I will be there when he dies.  I will be fifty five.  That's ridiculous.  How will I make sense of this?

Dominic is at peace with himself and has made his journey with his eyes and his heart open.  He has struggled and has been in distress, he has fought with the panic and the pain of leaving this world and he has also found great solace, great peace and great calm.  As a Catholic priest, he has had to work hard at acceptance and to give his will over to his God in this matter of his dying and death.  He is a priest, but first and foremost, he is a man, a person just like the rest of us.  His faith has not meant that he is spared any of the trials and pains of facing his death, but it has given him, in the end, great comfort and peace.  It has shown him how to be strong and how to be honest with himself.  He has shown us great humanity with this struggle to give up his life.  And now he is ready now to move away from us and when I see him tomorrow, I hope he will be aware of me and know me, but I don't bank on it.  

Conclusion

These two things are linked.  When I was staying with Dominic in Edinburgh a few weeks ago, I talked over the A Graceful Dying One Woman Show with him.  "Yes," he said, "I think that it is important that you speak from the heart.  Be very honest, and tell the truth.  These are your experiences and the part where you don't know how to die is the most important of all."  And so, that is the nub of the show.  

"I don't know how to die.  So I am watching you to see how you do it.  In the end, we just have to live"

I will be working on the One Woman Show and sitting with my youngest brother as he does his dying at the same time.  When I come to do the show, when I open on 30 May, I will still not know how to die, but I will have had another excellent, wonderful teacher that showed me with grace and kindness, how he did his.

I anticipate my journey up to stay with Dom tomorrow with joy and much sad confusion.  I don't know what to expect and I will just have to see what to do when I get there.

I anticipate my opening afternoon (the show starts at 4.30pm) in May and all the performances I give, with butterflies in my stomach, a nervousness that is hard to describe.  The last gift Dom gave me was the gift of his insight and belief in what I do, and his contributions to the A Graceful Dying make me feel that perhaps, despite all the things he has to do after he dies and goes to heaven, perhaps he will be with me too, making sure I am true to myself and I don't make anything up on the night.


Below, Dom just after Mum's funeral last September 2015 and then a year earlier working with me for the A Graceful Death exhibition.  We had just done our interview and I was leaving him exhausted, to go and write up all my notes.

And here is the portrait finished last year.  Dom is jolly and looks well, but holds a ball of toxic chemo drugs that he had to carry around with him.  It is attached by a tube intravenously into his heart.  So if you look carefully, he is not well.  The whites of his eyes are yellow too.  There are clues when you know what to look for, that all is not well.  His halo is the prayer that he says to himself to give himself courage. 

"Take Lord, receive all my liberty, my memory, will and understanding.  Give me only your love and your grace and that is enough for me"

to read Dom's interview to to http://agracefuldeath.blogspot.co.uk/

Come to the A Graceful Dying One Woman Show.  Dom, I hope, will be there in spirit. 

The Arctic in the Bognor House, Work, and George. And Matthew.

Part I.  The House.

Life in my house is rarely dull.

To set the scene, I own five lodgers, one son and a hamster called Matthew.  Matthew belongs to my son Giant Boy, and his girlfriend, but he lives here and is taken, by them, very seriously.  If I had my way, Matthew would be in someone else's house, lovingly taken care of, far away from me.  Matthew would be adored and petted in another part of the country, and I would not have to clear up scatterings of stuff from his cage as it gets walked around the house, or fear he will escape, or be fed to death, and I will have to deal with it all.  At one point, when Giant Boy was younger, there was a craze for dwarf hamsters, and they came and went here, living happy lives in wonderful cages with all sorts of games, walkways, assault courses and play areas constructed for them out of cereal boxes, old shoes and drinking straws.  Dwarf hamsters don't live that long, and once they passed on into that hamster heaven for which they are all destined sooner rather than later, they were buried with tears and honour, in a coffin made of a big match box, in graves of about four feet deep in our garden, and the next one bought from the pet shop.

Matthew is not my problem.  I tell myself Matthew is not my problem, he will not escape like the gerbils that Giant Boy once decided to keep.  These two gerbils escaped as they do, by eating their way out of their cage, and by the time I had found them, they had eaten the spare room.  Matthew will not do that, he is being trained by his owners to be happy and well and quiet and tidy in his large cage full of toys.

My lodgers are mostly young fellows, who don't feel the cold and who live blameless lives dreaming of having a six pack stomach and an easy life.  With beautiful girls knocking on the door begging to be let in.  One of my lodgers is not a man, and she is the only one who empties the dishwasher.  This lodger is an arts student, a very very good one, and has turquoise dreadlocks, and an absolute passion for spending as little money as possible on as much food as possible, and then eating it all in one sitting.  She is a genius at waiting till Morrisons cuts the day's groceries to 9p and then buying the lot.  And, bless her, she is the tiniest, slenderest, prettiest creature who must, like a cow, have two stomachs as there does not seem any way in the known universe that so much food can fit into her tiny frame.  But it does!  And the men here marvel, it is like her party trick, it is as if we are in the presence of a genius, and we all like to pop into the kitchen when she is here to see what she is cooking, how much of it there is, and how much she is eating as she cooks it, and then how much she sits down to.  Any left overs are taken to her college the next day in tiffin carriers that she ordered online. What a genuis.

I am writing today from my bed.  I am in my fluffiest pyjamas, my warmest dressing gown, and under a million tog duvet because over the past few weeks, my boiler has been playing up.  From time to time, the water has gone cold, or the heating has not worked, and I have paid plumbers to correct it all.  They have corrected it all, but something is fundamentally wrong with my system, and it keeps breaking down - which leads to today, the second day in which there is no hot water, or heating, and no hope of a quick fix.  Yesterday, I spent the day in a coat and hat in my house, shivering in my chair and clutching a hot teapot to my chest for comfort.  With no prospect of a bath, or of drying the laundry on the radiators as I used to do once long ago when life was easy, I took the decision to contact the extremely expensive specialist company the plumbers suggested for me, and book them in for Saturday morning, first thing.  My system is filled with sludge.  It is drawing in air, and with such a sludgy airy situation, there is no way hot water can survive and so it needs dealing with by the only people in the world who do this kind of thing (I am told).  My radiators and pipes, my boiler and my tanks are all sludge filled, all blocked and all resistant to any interference except from that of the specialist company, arriving on Saturday first thing, to spend five hours sorting it out.  In my mind, I have a little Basilisk, like in Harry Potter, swirling around my pipes and making my life a misery.  The tremendously expensive company with their modern and exclusive equipment will slay my Basilisk, metaphorically, in two days time, and like Harry Potter, we will all live happily ever after.

The lodgers are not batting an eyelid, bless them.  They have a vision of themselves as frontier types, living rough and forgoing washing and comfort (heating) in the interests of being tough.  They all continue to wear teeshirts and trousers, and some, like Giant Boy, don't even wear teeshirts.  Just tracksuit bottoms and no shoes or tops.  They haven't noticed the cold they say, what cold?  I sit in the kitchen in a coat and furry hat and boots, clutching the recently boiled kettle to my chest, and marvel.  I have noticed though, they have been wearing hats.  Thick woollen bobble hats, with the teeshirts and tracksuit bottoms.  Still no slippers or thermal socks, still just bare feet, but with hats pulled down over their ears and to just over their eyebrows.  Yesterday, as I sat in my chair feeling miserable in the cold, in my bedroom in what was the downstairs sitting room with the piano and the grandfather clock still in there, Giant Boy came into play some Debussy to me.  I sat huddled in all my clothes like an old lagged boiler, and Giant Boy came in with just trousers on.  That's all.  Bare chest, arms, head, feet and no goodbumps anywhere.  He sat and played the piano, happily, merrily, stopping briefly only to put the lightest of jackets over his shoulders, while I sat with a drip forming at the end of my nose only inches from him in my chair, wondering what kind of people live in my house.

And so, today, I am in my bed.  I am warm, comfortable, smelly, and determined.  Blimey, said one of my lodgers late last night after he came back from work, blimey the water was cold this morning!

You had a shower?  This morning?  With cold water?  I said.

Wakes you up, he said.  Don't worry me.  Don't really notice, he replied.

And there we will leave my household for the while, knowing that soon I will be warm and clean and dressed.  Soon being on Saturday, and today is Thursday, and that day will be one of the happiest of my life.  In some ways.

The household when there was heating and hot water and everyone put some normal clothes on for a birthday dinner

Part II  The Work

On the 4 January I went back into the studio having spent a few months coming to terms with life after my mother died in September of 2015.  The time spent not working, taking time off from my very busy and full life after Mum died, has been invaluable.  I have come to some decisions, to do with my work, and these decisions have made great sense to me.

I am first and foremost an artist.  My response to life, to my experiences, to what I encounter, to who I meet, to what I see and what happens around me, is creative.  It is through expression and painting, writing and filming that I make sense of the things that I do.  This creative response is intended too for you, for you to make of it what you can for your own lives.  It is about a human response to a human situation - I am meaning here my work on end of life and the act of dying.  My A Graceful Death exhibition is about my response to dying and to death.  It is about working with the dying to ask them who they are, what they want to say, and how they are doing their dying, and it is intended for public showing so that we can all start thinking, taking time out to consider this thing that we all will do, whatever we feel about it and however frightened it makes us feel.

Secondly, I am a soul midwife.  I have thought long and hard about this title, about whether it describes who I am and what I do, and I have decided that it does cover what I do.

Briefly, here is my thinking.  A soul midwife is a wonderful thing.  It is a wonderful idea, a concept that is genius in its simplicity.  The very fact that it is an idea and that it is simple, and that it has a million different applications, makes it almost impossible to define.  So what is a soul midwife?  The standard reply I give is - an emotional and spiritual companion for those at the end of life, at any time from diagnosis to death, for however long or short the contact is needed.  It may be ten minutes on the phone, it may be a series of visits, it may be a bit in the middle of the dying process, it may be vigiling with someone who is at the very end.  But, that is what I have come up with and even that is very hard to define because it is so open, it could, really, mean anything.  In reality, most people have family or friends with them, and muddle on through with them.  It is difficult to call a soul midwife you don't know, who doesn't know you, and so I have had to build up a reputation that is trustworthy and sound, so that I am known as a safe option.  That is itself is difficult, you have to do some soul midwifing to build up your reputation, and how to start and how to work it out and what to do is really very hard work.  Where do you start? How do you start?

No soul midwife just goes out there that is not already in a profession to which the soul midwifery is something to incorporate into an already established job, and does their thing.  In order to work with the dying, for those of us who have no medical training, no professional access already to the dying or to the dead - hospice staff, medical staff, funeral directors and workers to name but a few, we have to start at the very bottom and find a way to learn first of all where the dying are.  We have to learn how to be of service.  We have to learn what dying looks like, what it sounds like, what it smells like.  We have to learn how vulnerable and fragile the dying process can be, we have to see what we can do alongside all the other professionals involved, and we have to work out our boundaries. In my mind, in order to work as a soul midwife, you can only find a role for yourself after having spent time finding out what dying is all about.  Being there, seeing how dying pans out, how different illnesses affect people, watching the processes, learning about family dynamics and learning, amongst other things, the value of deep and true listening.

I have spent the last seven years working with people at the end of life, and the last five years building up experiences as a soul midwife, to the point now where I can, and do, use the title.  For the moment, I know what I am doing.  Because the end of life is like life itself, unpredictable, changeable, unknown, wonderful, awful, and all things to all people, I know as a soul midwife I just have to see what I can do for each situation, and try and do it.  It is as simple, and as complex, as that.

I am narrowing down my professional life to two areas.

• The A Graceful Death exhibition, portraits and words from the end of life, will continue with huge joy to take part in events, exhibitions, festivals, conferences and I will continue to give talks, workshops and presentations on how it evolved, the people who gave their stories and images, and what painting and interviewing the dying means in our world.  There are charges for hiring me and the exhibition which will be on a new website which will be up and running in the second week of March.  This new website will give details of what I do, and how to work with me, and will keep you up to date with exhibitions, events, talks and workshops as I do them

• I will be working as an independent soul midwife, and will be available on a separate number for anyone to call to make an appointment, or to chat, or to ask for help.  This number will be on the new website due to be up in the second week of March.  I will have at least half of every week set aside to be available on this new number.  There will be charges for soul midwife services, but as everyone should have access to this, if there is hardship, then donations will be gratefully accepted. 

One of the most valuable lessons from Mum dying is to try, to try hard, to focus.  To be simple, to do what is best for me.  To be better at a few things, not quite good at many.  As I am by nature a whiligig, and like to rush about in all directions, this is quite a learning curve.  I will still rush about like Taz of Tazmania but my working life will focus, mainly, on A Graceful Death and soul midwifery.  I say mainly focus, because I know I will do other things too, but I will concentrate on AGD and soul midwifery and that will be just right.

Part III  George

Mother died in September 2015 and my grandson George was born in December 2015.  One goes out, another comes in. 

This is just to say that I am in love, that George is wonderful, and that I am a grandmother.  

Baby George and me.  Yum.

Hiding in the Hiding Chair

Angels gather here.  From Mum's grave.

I am hiding, as you all know.

My mother died on the 4 September, and I decided to halt everything, postpone everything, cancel everything, and hide. Here is an update from under the duvet.

I am trying to hide.  Life does not come to a halt just because I want to stop taking part, and I have found that the decision to go to ground is more complex than simply not getting out of bed.  What is it that I am wanting to stop doing, then, that I was doing before Mum died?  That, oh that, is the question. Within the decision to hide are the questions - what am I hiding from?  And why?  We shall think about this below.

Describe what you mean by hiding

I am not really under the duvet.  In my new bedroom in the front sitting room of my house, next to the piano and the grandfather clock, there is an old white chair that rocks when you sit on it.  It isn't a conventional rocking chair, though it acts as one.  Covering the chair is a pink and white polka dot blanket, and over the blanket is a teacloth on which are printed spotty and stripy teacups.  Just where it most comfortable and effective when one sits down, is a purple cushion with extraordinarily large purple ruffles sewn onto the fabric.  On the floor to the left of the chair is a giant strawberry coloured blanket from the Avoca woollen mills in Dublin, and on the floor to the right is a big, dark pink, soft and fragrant shawl.  This is my hiding place.  I sit in this chair and decide which of my blankets I wish to wrap up in, and as the chair is in the corner of the room, I feel I am truly tucked away.  I have some pixie type slippers in green felt, with pom poms on them, from my son in law, and with these slippers on my feet, either or both of my blankets wrapped around me, I feel suitably invisible to the outside world on my chair that may or may not be a rocking chair.

Next to the Hiding Chair is a small table.  That is where I put my tray of tea.  On the other side of the Hiding Chair is the piano.  That is where I line up my pens, paper, books and I balance my laptop.  The door handle on the outside of the door has fallen off, and so I can get out if the door is closed, but no one can get in.  I am delighted with this and think I have discovered the key to the secret of my own survival.

And do you hide?

Not really.  I aim to, but life will not stop.

Life will not stop?

I am looking for space to process my mother's death.  I cannot do it while talking, or listening, or being with other people.  The idea of being utterly still and silent feels like the only way to achieve this, but I am not able to do stillness nor silence for long because it is not in my nature to be so. My two sons have been very ill recently, I cannot ignore that.  My daughter and her husband have their first child in a few weeks time, I cannot ignore that.  My father has dementia, my brothers and I cannot ignore that.  In fact, I have become my father's carer part time.  I can't do that from my pretend rocking chair behind the piano.  I have to get in the car and drive to London and back, which is a good long way away from Bognor Regis.

Every room in my house is rented out.  I have four image conscious, body building, pizza eating young men with fabulous hair styles in their late teens and early twenties living here, plus two exotic, well made up and ambitious young women also in their early twenties. The young fellows have uncomplicated ambitions.  To have six packs, to meet girls, and to have jobs that pay them lots and lots per hour. One of the gorgeously made up young women of the household is the girlfriend of one of the young men here, the one whose hair is more black, more sculpted and more unyielding than any of the others.  They both rent my annex, and live a sort of semi domestic life, except that neither of them like cleaning, or cooking, or tidying, or laundry. They like each other though, and pizza, and so far, that is enough for them.

The house is always full.  The lodgers that live here are glorious, uncomplicated, messy and full of life.  They make me smile, I try and keep order (they are very well meaning) and we all rub along very nicely indeed.  They cannot be ignored. Even if I wanted to, I could not pretend they are not here and hide away to think my thoughts for very long.  None of my household can see beer bottles when they are empty (not because they are drunk, but because the beer bottles are no longer interesting without beer in them and so become invisible).  They can't see pizza boxes either when they are empty, and the putting on of laundry in the washing machine is more than enough housework for the time being.  It can, and does, stay in there after the cycle has finished, until it dries in a muddle and smells awful.  Washing up means putting some things in the dishwasher, and the rest in the sink in old water, because they lose interest and feel that if half of their stuff is in the dishwasher, then that is as good as all of it.  The spoons and cups and plates in the sink become, like the beer bottles and pizza boxes, invisible, and off they go to have another cigarette in the garden and to plan the next bout of training with weights and dramatic haircuts.

My lodgers are full of goodness.  They help me in with heavy shopping.  They ask how I am, they tell me their plans.  They mow the grass and they try very hard to not have parties when I am not here.  They are funny, kind, young and all of them work hard.  They pay all their bills on time, they never complain and I love having them around.  Hiding from them is necessary, even without Mum dying, but it's good to know that when I get off my pseudo rocking chair, and leave my room and encounter them in the house, that all the important things in their lives are still as gripping as ever.  (Girls, six packs, pizza and money).

Work that went on hold when I moved in to look after Mum is now due for completion.  I am doing that, and it gets me into the studio.  The studio worried me.  I thought, because I need to stop everything, that I don't know what to paint or create any more, and perhaps all of that has gone.  It hasn't gone, it is on hold, and when I get perspective, which I do more often than I don't, perhaps something will come out in a painting.  I am content with that for now.

What has been postponed is seeing my friends.  Talking on the phone.  Going out and doing things.  I have put all work on hold that takes me out from the house or studio.  I don't have very much to say, and I am not able to articulate what is in my mind and heart, because I don't really know.

I am not grieving.  I am bereaved, but not grieving in the same way as for Steve.  I am sad, I am quiet, I miss my mother but I am also feeling released and relieved.  I loved my mother, but she was difficult and I spent most of my life trying to get away from her.  My mother was powerful, clever, loving and kind.  She also suffered from terrible depression, and was manipulative, judgemental, cruel and angry.  Much of her anger was directed at me.  It was difficult to find a way to be with her, and difficult for her to find a way to be with me, but we did find a way, and I loved her, and I know that she suffered terribly.  But she could be toxic.  Our last six weeks together healed us both.  There was no need to fight any more, no reason to hold back, and what was left after the struggle was no longer a struggle was a depth of wisdom, love, kindness and strength.  The last six weeks of Mum's life saw what was true about her, what was always present at her core; her extraordinary wisdom and insight. Her power and her ability to love without boundaries stopped fighting with her demons, her darkness and her need to destroy.  Her remarkable intelligence was no longer masked by her denial of it, and everything that was good about her shone in her final weeks.  She could love me and accept me for who I was, and I could love her and accept her for who she was.  She gave me the chance to really see her, and she showed me healing and went out of this life as the best and truest version of herself that she could be.

So I am hiding, and asking myself who I am now.  I will be a grandmother next month.  My difficult and beautiful mother allowed me to help her die.  I am no longer judged, and I was truly loved at the end.  So what and who am I now.  What has my mother taught me?  What do I want to do?  Who am I now?

And?

I have no idea.

When my first child was born, my mother bought me a red arm chair in which to sit and feed the baby.  I remember deciding to sit in that armchair for six weeks because I didn't know what to do, and I needed to be alone with the baby.  Six weeks passed, and I decided that it wasn't enough, and that what I needed to do was to stay in the chair in my pyjamas with the baby, indefinitely.  I stayed there for three months.

This is what I am doing now.  I am in another chair, and I am often in my pyjamas, and at the moment, I feel this is where I will be for at least three months.  I am holding my mother's memory, and thinking about what her life was like.  It is making me think that my own life needs to be much more simple.  Sitting in my Hiding Chair I am letting myself stop being busy all the time, I am letting myself day dream, I am asking myself do I really want to do all the things that I was doing before?  Do I really want to do all those things?

Conclusion

There isn't really a conclusion today.  Just an ongoing process.  I will be sitting here for some time, letting it all hang out, so to speak.  Mother, like Elvis, has left the building and I am coming to terms with what that means.

Planting to mark the spot where Mum secretly buried her sister Kit's ashes, to make sure they went into consecrated ground.  Mum is buried just over the car park on the other side, amongst the new plots.  She and Kit are together again but one is legit, and the other is not.

On sitting in my new bedroom after my mother's death

I am sleeping in my sitting room, under the piano.

That is not quite true, I am not under the piano, and I do have a bed.  I am sleeping in a bed in the room that used to be my sitting room, and is now a bedroom.  The piano is opposite the bed.

My mother died a few weeks ago.  In order to be with her to nurse her, I packed a single suitcase and moved out of my own bedroom in my big Bognor house, and moved in with my mother.  Within days, I had rented out my now empty bedroom to a nice fellow, the sixth lodger in the house, and sealed my future for after Mum died.  I have returned, Mother is buried, and I now live in what was my sitting room, transformed into a very large and wonderful bedroom, with a piano, and I am delighted with it.

The disadvantages are

• There are no curtains. I have sewn pink ribbon tabs on some gauzy wafty white curtain material which has been tied it onto the curtain rail, but they only cover the corners of the window.  The middle is as see through as a big glass window can be.  For bored neighbours I am a reality TV show, if they stand on the pavement just yards from my new bedroom, they can amuse themselves by watching my every move.  
• The curtain rail is really only for show.  It was put up many years ago with light exotic Indian curtains with tiny mirrors sewn into the fabric, attached to it already, so that the curtains had to be cut off when they disintegrated last month.  The curtain pole was fixed to the wall with brackets that not only have half the required screws in them (making the pole very fragile and meaning that any curtains hanging from it need to be extremely light) but the brackets prevent any curtains being drawn and covering the window.  So I have had to replace my old Indian type curtains with the lightest of curtains that have been tied on to the curtain rail and neither close nor protect my privacy.  
• Being supremely visible, I have to undress by lying on the floor at the foot of my bed and wriggling about.  To do this needs planning; there is no use in being able to get out of my clothes only to find I have left my pyjamas on top of the bed, by my pillows, directly underneath the large, clear, uncurtained and see through window.  Hooray, say my neighbours, that's a show and a half, well worth the wait.  What now?
• I cannot scratch my bottom, clean my ears with a pencil, or look unappealing in any way because all of my neighbours and any passer by that looks to their right, or to their left, while passing the house, can see in and become very involved with what I am doing at that moment.
• Giant Boy still needs to practice his piano.    

The advantages are

• The room is twice the size of my old bedroom.
• Giant Boy still needs to practice his piano
• I can hear who is coming and going at all hours, the room is next to the front door and I can in theory, burst out of my room with my dressing gown and curlers, in the early hours of the morning and catch my lodgers out with whatever it is that they should not be doing.  They are great fellows, my lodgers, I won't be catching them out, but it is the fact that I have the opportunity, and the power, and the means, should I decide to use them, to assert myself and be despotic and unreasonable. 
• I feel like I am a student again, delighted to be living in a sitting room, and hanging my clothes on hangers all around the room on the picture rail.

The mattress was on the floor here before we made up the slat-less frame.  It is now as delightful with the frame made up and the mattress forming a gentle V, but looks like a piece of modern art.  A bed installation, which is given more meaning as it is actually used as a bed.

I borrowed the bed from one of my brothers, left for many years in Mum's garage. (The bed, not my brother, was left many years in Mother's garage).  It is a lovely bed, but has been made and dismantled from a flat pack state of affairs many times already, and the slats holding the mattress up have buckled.  This means there is a big dip in the middle of the mattress where the slats holding it up underneath, have popped out. Not only does it mean that when the bed is made in the morning it forms a gentle V shape, it also means that if I get into bed at the side, I will roll into the middle a little like how we all used to roll down a small grassy hill as children, and I stay there in the middle of the mattress till I wake enough to climb back out again.

My vision for this room is to have soft chairs in here so that I can use it still as a sitting room for my friends and me to sit and chat and have tea.  So far, I have one comfy chair and a little table, and strangely enough, I am content with just the one chair.  I sit in my chair and read, and write, and think.  In time, I will bring the little sofa from outside the kitchen into this room, but not just yet. I have to find a wardrobe and a chest of drawers so that all my things can be put away, and space created, but just now, I like the feeling that I have just arrived, and that all my things are placed around the room in boxes and baskets, and clothes hung from hangers from the picture rail.  I feel as if I were a character in a late nineteenth century Parisian or Russian novel, newly arrived with lovely things and no furniture into a large room with big windows, my boxes filled with clues from my past, and a single comfortable chair in which to sit and have tea and consider my future.

My mother has died.  Everything has changed, and nothing has changed.  Life goes on, it tends to do that, and that's fine.  Time can be a very kind thing, it carries us forward whether we like it or not, and every space that is created after such a thing as a death, has the possibility of being filled with other things.  My mother has died and I held her as she breathed her last breath in, and let it go with a sigh.  My hand was on her chest over her heart so that she would know I knew what she was doing. When her heart stopped, we would both, Mum and I, know. It was our final connection in this world.  My daughter was holding her grandmother's hands, and in the early hours one morning, Mother ceased to be alive.

I am not filled with grief.  I do not cry and I do not feel as if my world has ended.  Quite the opposite, I feel as if my world is beginning again.  My mother's gift to me was, and is, the gift of life.  I miss her terribly, my heart is heavy.  I love her, and I want to be alone and silent.  But that is not a bad thing.  Her dying was her final lesson to me, and when my time comes, I will remember it.  The value of my own life is highlighted by the end of hers.  And so, in my new room, here in my sitting room that is now my bedroom, I am sitting alone on my single soft chair and letting time settle my mind, and wondering what it is that I want to do, and be, now.  Her death has freed us both, she would like that.  My daughter will have a baby in December, I am the new Grandma.  When I was a new mother, my mother was there to show me what to do.  I am to be a grandmother now, and my mother has left the scene, giving the role over entirely to me, to make of it what I can.

So today, here in my Parisian or Russian novel, I sit in my blue and white spotty dressing gown from Primark, in my single soft chair wrapped in a raspberry pink woollen blanket from Ireland, thinking of my day ahead.  There is much that I have to do, but what is coming through from being with Mum as she died, is that I don't want to do any of those things.  I want to be free to think, and to take time to paint in my studio, for fun. I want to have time to read, and to stay still, and to have no plans.  There is a great deal of assessing going on in my mind, and body, it needs space to form and become words and images, it needs silence and freedom from commitments to become something I can express in the best way I can, which is creatively.

There is no hurry.  My unformed bedroom and my unformed thoughts are part of the process of making sense of what my life is going to be without my mother.  She has entered eternity, and I am taking something of that time and space here, to recover and think things through.

Perhaps I will get up now and go and find a wardrobe.  That is enough for now.  At some point, I will cover the window and prop up the bed, but it doesn't bother me in the way that it would have before Mum's illness.  You never do know what is around the corner, now could be the only time you have to sit and think.  Not being busy is a whole new experience, a new mindset to get used to.  Letting in the long moments, the stillness, the freedom, is both hard work, and easy, all at the same time.

Time to get the show on the road.  Time to entertain the neighbours with getting dressed and making the bed.  Time to walk slowly into the day, and to consider each moment enough in itself.  And, perhaps, today, to buy a wardrobe.  Perhaps.

Mum came home in her coffin for all her friends and neighbours to say goodbye.  I polished this table like a mad thing, if she came back and couldn't smell the polish, I'd be in trouble.  Except of course she can't smell anything, and nor would she want to, being on a cloud with a harp and some wings, along with most of her friends and her mum, dad and siblings.

Self Worth, Self Value, and Turning Up

Self worth and self value.

I am due at the hospice this afternoon. I'm there to spend time with anyone who needs or wants some company, and I have been doing this for a good while now.  I still get nervous before I go in, I think can I do this?  What if no one wants me there?  What if I say the wrong thing and I upset someone?

Sometimes, with all the things that I'm involved with, I think - I have no idea what I am doing, perhaps I should call the whole thing off.

What I am really questioning, is my value.  What if I have no value when I turn up to do something, when I put myself out there, when I am being me?  What if I am wrong, and no one has told me? What if I am simply not good enough.

Sometimes we feel very alone

If I were to act on the fears that I am not good enough, I would stay safe and silent and take no risks.  I would feel the world out there was an unpredictable, unsafe place that had the potential to undermine me and make me feel unworthy.  By not doing anything that made me feel unsafe, that challenged my sense of self worth, I would create for myself a glass bubble in which I could protect myself from as much pain as possible out there.  The down side for me, if that were the case, is that I would become angry and resentful, and I would blame other people for the restrictions I felt I had in my life.  My self value would be based only on reactions to outside influence and my interpretation of what other people thought of me.  If my self worth in this case was measured in terms of water, it would be a tiny pool in a dried up lake, liable to evaporate further in the sun if I did not protect it.  Hence the glass bubble, and the fear of anything that may challenge my fragile feelings of value.

Here is what I think about valuing ourselves. 

• We are all human.  We are all just people.  Even people you don't like and people you admire, are just people.  
• Nothing comes of nothing. Doing nothing will bring nothing.
• We are often wrong about how we think others see us
• Our fear of getting it wrong blinds us to seeing what we get right
• Being vulnerable, feeling unsure, is normal. If we feel this way, so does everyone else
• Often we can't hear praise and we can't see success, we are fixated on looking for proof that we are not good enough.
• It is often the little things that make a difference.  You cannot know how much a welcoming smile might give someone a lift of spirits, the tiniest most give away thing that you were not even aware of doing.  Or, for example, this makes a difference to me, when I am talking to a group and one person looks at me as if they understand. I feel affirmed by that one person. 
• We have much to give.  Comparing ourselves to others who seem to have it all, is fine as long as it isn't a way to make us crumple into a ball of doubt and inactivity.  Comparing ourselves to other people as a punishment, is a way to continue to do nothing. We still have much to offer.
• Keeping busy to drown out the silence, and to prevent feelings of self doubt, are as bad as creating a glass bubble in which to live and try to avoid pain.

Uncovering, maintaining and allowing a sense of self value is an ongoing project.  It takes a lifetime, and what we know of ourselves now may change entirely over time. The tiny puddle in the dried up lake may well need protecting, but the potential to increase the puddle in size to fill the lake, and make it less vulnerable to evaporation, is entirely possible and within our scope.  If we allow it.  This means taking risks.  Taking risks such as, among other things, knowing what we want, asking for what we want, saying no, saying yes, turning up when it is difficult to do so (the hospice this afternoon), and the big one - knowing ourselves.

Knowing ourselves is fundamental.  If sounds indulgent, it sounds impossible, it sounds complicated.  It is all those things and it is also enlightening, fascinating and rewarding.  Knowing ourselves gives us insight into other people.  Knowing ourselves is our duty - we are given our bodies, minds and souls with such things as consciousness, free will and choice - why would we not explore who we are and what works best for us? When we die it will all be gone, there won't be another chance, why waste this opportunity to know who we are?  We may be fabulous! We probably are. Knowing ourselves includes that old chestnut, being kind to ourselves.  Someone said that we should treat ourselves as we would a child.  Feeding ourselves well, making sure we sleep properly, listening to ourselves and giving ourselves time and attention; keeping ourselves safe and looking for ways for us to thrive and reach our potential.  Sounds great, doesn't it?  

This afternoon I will go to the hospice, and I will do that difficult thing, turning up.  I will turn up.  And here is the reality of it - it doesn't matter if I sit with anyone or not.  It matters that I go there with the intention to be available, and to do my best.  If, and this does happen, someone says go away, that doesn't matter.  I am not being rejected, that person has their own journey and saying go away to me isn't about me, it is about them.  They need to be alone, and they are letting me know.  If I go and sit with someone and make a difference, then thank goodness I turned up because if I hadn't turned up, that connection may have been missing with them forever.  And in the hospice, there isn't much time.  I may feel unsure about the afternoon ahead, but I know that it will be OK whatever transpires.  Sometimes, it isn't the patient who I sit with, sometimes it is a family member.  And sometimes, I learn from the other volunteers and staff there instead of sitting with anyone at all, which if I was basing my sense of worth and success on only sitting with patients and making a difference, I may consider a failure. It is not in any way a failure - and I must add that the business of sitting with a patient and making a difference is never guaranteed.  I may sit with someone, but I cannot do more than just be there and see what happens.  That is the risk about turning up.  I love what I do, despite it being an unknown quantity each time, so I expect nothing and anticipate everything - and none of it is about me being either good enough or not good enough.  I guess it is about taking a risk and having faith.  This business about going this afternoon to the hospice is the same for all the work that I do.  At the risk of sounding rather vague, it comes down to saying yes, turning up, and having faith that I will do my best and, big one here, that I will survive.  Every time I leave the safety of my home, anything could happen.  I have to have faith that it will be OK and I will be the best that I can be.  And if it doesn't go well, I will still survive and there will still be tea and cake.

 Events coming up

Gill Lake and I are presenting our next Spirit of Living and Dying workshop on Wednesday 10 June at St Paul's Art Centre in Worthing.  From 10am to 1pm, price £20 per person. An interactive, creative and gently challenging session, and all are most heartily welcome.  There will be Gill's cake, one of our USPs.  

A gentle and challenging look at how we live because we will die

And on the 15 of July, Gill and I will be at the Hamblin Trust, Bosham House, Main Road, Bosham near Chichester, PO18 8JP, with our Conversations about the End of Life, Finding Time to Think in our Busy World from 2pm to 3.30pm.  It is free, with suggested donations of £3.50 which all go to the Hamblin Trust. 

The A Graceful Death exhibition is possibly going to Dorset at the end of October, as part of the Elephant in the Room festival, hosted by soul midwife and nurse Keira Jones and her musician husband Jim Fox.  Fingers crossed, as I love working with Kiera and Jim.  They both run The Centre in Swansea, a wonderful place where anyone with a life limiting or threatening illness can go for free holistic treatment and advice.  They run the Centre with donations from the public, and do absolutely groundbreaking work there.  A link - http://www.thecentre-swansea.co.uk/  

And Finally

I notice that we are terribly serious with this blog.  There aren't many jokes. That doesn't mean I have been gloomy during May, there has been much fun and hard work, and there have been wonderful highlights.  One was AGD in Maidstone as part of Dying Matters Awareness Week, to an event run by Volunteer Action Maidstone on behalf of Macmillan cancer care.  Oh boy, it was wonderful.  You can see how wonderful when you see Team AGD Maidstone below

Melissa who runs Cake and Death workshops, me in the middle and cousin Maddy who is a pain specialist physio.  This was taken just as we had finished setting up before dashing to the loo to change into our ball gowns and tiaras for the opening event.  Missing from the photo is the ever wonderful and super efficient Jane Pantony who is the brains behind this event.

A very good thing is that this month I fly out to Tanzania to stay with photographer extraordinaire and dear old friend Eileen Rafferty.  You may remember that Eileen moved there a year ago, selfishly accepting a huge promotion and diplomatic status to work for DIFD in Tanzania and leaving me in Bognor to fend for myself.  It is all about me, I said when she was offered the job but still she went.  I am going to stay with Eileen for ten days, and I am so excited.  We are going to Zanzibar too, and Eileen, who did not drive in the UK till a year ago, will be driving me in her 4x4 car in Africa.  Eileen, who thought she knew herself pretty well, has found reserves and strengths she didn't dream of.  No glass bubbles for Eileen, her lake is well and truly brimming.

Have a lovely June all of you.  I will see you in July, and hope that you all find the space to treat yourselves like a child. By that I mean don't put yourselves on the naughty step, but treat yourselves to ice creams and kind words.  

 I will leave you with a photo from the Maidstone AGD exhibition, of the lovely Anne Snell, beside her portrait of when her husband Peter was dying.  Peter died before the painting was finished, and we remember him in the exhibition.  Anne lives near to Maidstone, and it was lovely to see her again.

It is sheer coincidence that Anne is wearing the same cardigan that she wore in for the painting.  Note too the fancy cake that was provided for the Tea and Cake afternoon discussion session run by Melissa earlier.

Goodbye Mike with all your Outrageous Lies, with huge Respect

Mike Hardy.  Thank you Mike.

A few weeks ago, on the 29 April Mike, pictured above, died.  His family and his wife Michele were with him and I think it was the end of a long, long journey for all of them. His death was not a surprise as Mike had suffered from Motor Neurone Disease for many years, but it is very very sad,  and I cannot imagine how much his family must be missing him.  At Mike's funeral, there was standing room only, he was such a memorable man and so many people cared for and about him.  Mike's portrait above was painted for the A Graceful Death exhibition a couple of years ago, when Mike could still speak a little and could type on his computer keyboard.  He was articulate and clever, speaking of his illness and how his life had changed without a shred of self pity.  As an assistant head teacher it seemed his gift was to educate, and I have been taught much about life with MND by Mike and his wife Michele.

Michele was his main carer.  They were supported greatly by specialist nurses, carers and the MND society, but even so I only glimpsed the amount she did for him, and I was, and am, filled with deep admiration for her practical, articulate, consistent and loving approach to the life they both were faced with after the diagnosis of Motor Neurone Disease.  Michele made no secret of how hard it was to look after Mike, and how frustrating the illness was for them all - an illness which must have take about thirteen years from the diagnosis to his death on Wednesday 29 April last month.

I was first introduced to Mike through soul midwife and dear friend Mandy Preece, a volunteer on the Macmillan Unit in Christchurch, where for many years Mike attended the day centre.   For his final few days, Mike was admitted into the ward at the unit, and was cared for by the staff who had been with him since the beginning, where Mandy too was able to say goodbye to him.

A few years ago, Mandy had arranged for me to meet Mike in the day centre, to talk about him being painted and interviewed as part of the A Graceful Death exhibition. She had spoken to him about it, and he seemed keen to be involved, and so Mandy called me and made a date for us to meet.  I went along with no idea of what to expect - I knew Mike communicated through a computer keyboard, and could speak with difficulty, that he was wheelchair bound and that I had never met anyone with MND before.  I wasn't sure if I was going to be able to communicate with him, and I was nervous.  As I approached to say hello, Mike giggled and started to tap out a greeting.  Instead of saying, "Hello Antonia, I'm Mike and nice to meet you, don't be nervous" he tapped out the text that I have painted onto his portrait - "I had a dry sense of humour and told outrageous lies but now I am a gibbering wreck."  Everyone started to laugh, I was instantly at ease, and I was aware that no matter what I thought, Mike was in control, and was fully, totally, all there.  One of the first things he taught me was that MND takes away your physical abilities, but doesn't take away your mind.  He couldn't take part in conversations by speaking, but in his head he was replying, giving his opinions and being just the same as he always was, only no one could hear him.  He also showed me that if you are going to speak with someone who uses a keyboard, and cannot speak, you need to take your time.  We are so used to communicating quickly and moving on, we never think about long silences and how it must feel to take five minutes to say one thing.  Mike showed me that I needed patience if he was saying something, to wait and to let him say it or write it, and not to interrupt needlessly.  I really enjoyed meeting with and working with Mike and Michele, and I am grateful to them both for their wonderful contribution to the exhibition.

A few weeks before he died, Michele brought Mike to see A Graceful Death at Mandy Preece's event Dying to Know in Bounemouth.  He took a long, long time to  tap out on his keyboard "I've gone downhill a lot since I saw you".  Michele is standing behind his portrait holding it up.  

I have been thinking recently, about what I do.  There is something about working with the end of life that means that I work with life itself.  When I am asked to talk on A Graceful Death and soul midwifery, I am clear that I don't work with the dead and I don't work with after death.  That is not my gift, I have friends who are fantastic in the work they do after death, my thing is working with the living.  Until the moment of death, if required, but always with life.  Because of this working with life, I have begun to listen and be aware that many of us who are not actively dying need soul midwifery just as much as those who are known to be palliatively ill.

Let me think about what I mean by soul midwifery.  My friend and colleague Mandy Preece defined it for me thus

 "A soul midwife is a holistic therapeutic companion to the dying offering sound, colour therapies etc. to ease the dying journey. What we do is provide emotional support by sitting alongside and being with someone without agenda and being willing to listen to their fears"

I am some of that, but I don't offer sound, colour or therapy of any sort.  I do the sitting alongside without agenda listening, and I do the being present and holding the space.  Listening to what is not being said as much as what is being said, and giving all my attention and love to the moment, for however long that moment lasts.  It used to confuse me that the most profound and best moments were just those, moments.  I had imagined that to make any difference, I had to be with someone for hours.  It didn't feel right otherwise, as if in order to be real, any breakthrough had to take ages and to be really difficult, or it didn't count.  Sometimes that is the case, but mostly, the most enlightening moments are random, fleeting, and if you blink, you may miss them.  They are moments of grace, and are sometimes deeply moving, sometimes painful, sometimes blissful.  Sometimes they are all of those things.  

Yesterday, I accompanied a lady to visit her friend in hospital, who was slipping very gently away.  The friend, according to his family, was not talking about what was happening, was not saying what he wanted, was not addressing this terrible situation.  The person who I was to accompany, felt unable to help, and wanted support.  But what I found when I entered the hospital room, was that this man did know what was happening, he was telling us in his own way, it was just that it was not in the way his distraught family could hear.  He was speaking, but quietly, with half finished sentences, with insights and gentle regrets, about getting ready to go, about acceptance and about the sadness of not seeing his grandchildren grow up.  What he was not doing was answering questions, or discussing his funeral, or helping his family feel better.  We sat down with her friend, and once we had provided the space and the silence to hear him, and to give him the attention he needed, and to acknowledge what he was saying, he began to tell us about how he was coming to terms with his dying.  Between us, we held his hands and listened to all that he was saying, and all that he was not saying and between us, we let him know we understood.  

This being understood, being given the space and the attention, is what we need in life, not just at the end of it.  I have been considering, that being a soul midwife is a necessary thing for everyone, not just the dying.  Being aware of our own mortality, really accepting that time will pass whatever we do, and this one life we have is ours to use and create and live, is so simple.  It interests me that if someone focuses on us when we are talking, gives us the respectful attention we need when we are communicating, we feel valued, heard, supported and affirmed.  Don't wait until someone is dying to offer this, do it now to whoever is with you.  I think I will be a soul midwife to the well and living too.  

What's On

Conversations about the End of Life, Finding Time to Think in our Busy World is coming back to St Paul's Art Centre in Worthing next month, June.  Free, and very interesting to see who comes along, and what we all talk about.

Spirit of Living and Dying Workshop also at St Pauls Art Centre in Worthing - an interactive, creative loving and challenging workshop where Gill Lake and I suggest that we recognise that facing the fact that we will all die gives us the impetus to live, really live. The date on this poster is wrong - it is now Wednesday 10 June so please do come, but on Wednesday 10 June.  

Wednesday 10 June.  Not Tuesday 2 June. Still a very good workshop despite messing the dates up.

A Graceful Death exhibition

Next showing in Maidstone in Kent for Macmillan Voluntary Services, as part of Dying Matters Awareness Week.  I am really proud to be associated with such a wonderful organisation, and have deep admiration for the work they do.  Jane Pantony from Voluntary Action Maidstone for Macmillan, is hosting this exhibition, and is also a trained soul midwife.  

Soul midwife and friend Melissa Grassel White will be there for the exhibition to help, and is hosting a Cake and Death event, similar to a Death Cafe on the Friday afternoon. And my dear cousin Maddy is not only letting us stay with her (she lives nearby), but is coming to help too.  Maddy is an experienced AGD helper, and is a very dedicated pain relief specialist and physiotherapist.  The exhibition is free, and runs from Thursday 10 am to 10 pm, and Friday 10am to 6pm.  As you can see there are workshops and talks, please come along and take part.


And In Between

My work as a commission artist has been ongoing, and when I am not doing other things, I still paint pictures that are not to do with end of life.  I have painted a whole series of God's Life pictures which show rooms in God's house, just as God has left them for a moment.  We get a glimpse into the room, and the clues around the room tell us what God has just been doing, and what surrounds God at leisure.  Here are two latest paintings.  Acrylic on canvas, and about 10" x 10".  It may be difficult to see all the detail, as I still need to get a professional photograph taken of them.  See what you make of God's Garden (note the dove cote and the lamb and the tree of knowledge) and God's Bathroom (note the bath towel, the laundry baskets and the mirror).  The paintings carry on around the edges of the canvas, which is not visible here.  I have added little quips and images around the sides which are only visible when you stand in front of it.

God's Garden

God's Garden, with an apple from the tree of knowledge half eaten on the deck chair.

God's Bathroom

Note the crown on the loo paper.

And finally in honour of Mike and Michele

This was filmed in September 2013, for the A Graceful Death exhibition, and is a witty, insightful and truthful account of life with Motor Neurone Disease, for both the carer and the patient. 

                 

RIP Mike and thank you.