Follow by Email

Monday, 25 July 2016

Not yet the final set, Mr B x

Setting the Scene part I

Mr Bedford and I sit together in the early morning in our hotel room in Eastbourne.  The sun is shining, the seagulls are seagulling, and the fresh sea breeze blows in through the open windows of our room.  We are here this weekend so that Mr B can play tennis.  He has been an enthusiastic member of the Active Away Tennis Holidays for years now, playing abroad and playing in the UK, and loving every minute of it.  This particular short break is held on the grass courts at Devonshire Park in Eastbourne, and we have come here together so that he can play as much tennis as he can, and I can have a break and watch him play.

The session has started on the courts opposite our hotel, and soon, we will go and join them.  This is day two, yesterday Mr B played far more tennis than we expected, pushing against his illness, and causing the tennis coaches and teams to call him #inspirational.

Mr B is wearing a bright blue shirt, and a white baseball cap making his 6'4" frame very visible.  I am wearing a pretty halter neck summer dress, lots of sunscreen, and pink lipstick.  The scene is set, our day will now begin.  You get the picture.  One of us who is very healthy will sit down a lot, and the other who is not well, will play tennis.


Mr B wears a jaunty blue top and plays on


Setting the Scene part II

Mr Bedford, Alan, is my other half.  We have been together for most of the past eight years.  He is tall, athletic, sports mad, clever, independent, driven, competitive.  We are wonderful together, we are total opposites, and we drive each other batty too.  And so, over the last eighteen months, my competitive, focused, tennis mad, clever, kind Mr B began to suffer intermittent heart beat issues, though not enough to stop him winning tennis cups as recently as October 2015.  As it got steadily worse, by early 2016 he began to suffer various aches and pains that were completely different. The GP didn't examine him, or refer him.

We went on a wonderful holiday in Madrid in March, where Alan agreed to come to the art galleries if I would come to a Real Madrid football match with him.  It was fabulous, the art galleries were glorious and the football match - well, it was so exciting.  Alan knew everything about the game and the staduim,  I was delighted to note that not only was the big outdoor stadium well heated, but that the passionate, shouting, excitable fans all sat down at half time and took out foil wrapped sandwiches of salami and large white rolls of bread.  I imagined their mothers packing proper snacks so that the wildly excitable fans would have a sensible food break before standing up and shouting again.

Half time at the Real Madrid match, with all the passion of the fans diverted into their healthy snacks

Madrid was wonderful but it was noticeably hard for Alan to keep up with the walking.  His energy was low, he was breathless, and despite the absolutely wonderful time we had, he didn't feel well.  I didn't give it a second thought.  Mr B is always fine, he is in control, he knows exactly what he is doing, he is Mr B!  When I think back at how blase I was about his need to stop, to rest and to get his breath, I am horrified.

At home, Alan's health got worse and worse.  I was very sorry but carried on with my busy life. Nothing seemed to work, nothing was relieving Alan of his symptoms, and it seemed that things were getting serious.  I was incredibly busy, but wasn't too worried about Alan, and hoped he would recover soon.  He always knew what to do.  I left Alan to sort himself out, thinking it was only a matter of time before all was well again.

During all this, my brother Dominic was dying.  He had been dealing with his cancer for over a year, and things were getting bad for him.  My other brothers and I took our father up to see him in Edinburgh where he lived, and we all knew the end was coming.  I am a soul midwife, I had arranged with Dom to come at the end to stay and to be there when he died.  As I waited for the time to come for me to go up and stay with him, as Dominic's next of kin, I prepared for his dying, his death and what would happen afterwards.

Late one night I arrived at the hospice in Edinburgh, slipped my hand into Dom's hand and stayed in his room with him until he died quietly and with grace three days later.  On the day that he died, as I sat with the nurse going over the death certificate, a call from Alan came through.  He had been to see a different doctor who immediately referred him and within a few hours, he had had a terminal diagnosis of cancer with secondaries.

I am, said Alan on that phone call, stuffed.

The next stage

Immediately after this call my phone rang again and a man's voice asked if I had any spaces to do some Reiki for him.  He wasn't feeling very good and he'd heard that Reiki was effective.  I took his name and number and said I'd call him back.  I hoped he'd think I was busy doing Reiki and much in demand, I hoped he didn't suspect I was sitting next to the dead body of my brother and trying to process the news that my partner, who's health and presence I had utterly taken for granted, had just been given his own terminal diagnosis.  I did call him back, but I am not sure the Reiki he eventually received was any good.

 My dear, strong, wonderful Alan has the same cancer that Dominic had.  The same cancer that Steve had.  Each time this happens, it is as if it is the first time.  Each person it happens to, it is the first time.

Of course he is having treatment, and of course he is fully in control.  We have time, we have some time, and while we all, his family, his friends, me, him, all get our heads around this, life goes on.  Alan has said that he wants a good life now, within his cancer and the chemo, and that he has lost the need to be driven.  That is true, Alan is much sweeter and it moves me that he is amazed that people are so kind to him.  Of course they are.  He is noticing now how much people like and love him, work and competitive sport are no longer in the way. But he is very weary and without his medication, can be in much pain.  His son and I take it in turns to accompany him to his chemo every two weeks, and we, his son and I, consider it a great pleasure to spend this time with him there. It is the equivalent of down time with Mr B, which in the past, would not have been easy to do.  Work, deadlines, action, sport, doing things, getting on were what motivated Alan once.  Now, paradoxically, an afternoon having chemo means we all get to chill with him, chat, read papers, sit around, and eat sandwiches. And he is amused at how this has turned out too.

Resting, catching breath, before going back on court



How am I?

Up and down, thank you for asking.  Mr B is philosophical, practical and realistic.  We take our lead from him.  But I get such sad moments and have decided to live as much as I can, as he is doing, in the present.  We are having such lovely times together, but I get lonely in advance.  Then I shake myself out of it and think, lucky me, I still have Mr B today and right now, so let's get on with enjoying that.  Mr B's illness has made me stop and take my own health into account.  I tend to ignore my own body and mind, I think I am too busy and important to stop and smell the roses in my garden.  I'll be fine, I say, don't ask me. I'm busy.  I am trying to do what Dominic did, listen to my body and really hear it.  I am trying to take stock of myself.  And the funny thing is, sometimes I don't feel right, and sometimes I do feel ill, and that is fine.  The world doesn't stop, and if I tell people, they are nice and no one thinks I am weak and making it all up.  I am in the middle of this experience with Alan, and I have to accept that all I need to do, is to say how I am feeling right now.  I have no idea how it will end, where it will end, and what will happen.  But I do know that today is a good day, and there are more good days planned.


In conclusion

It is now lunch time.  Alan has come back from playing tennis, happy, sweating and tired. We order room service and he has a bath.  He asks me what I have said in this blog, and I begin to read it to him but it makes me cry, and have to stop a few times.  He holds my hand and listens, and then being Mr Bedford, suggests some improvements.  I make them.

We sit on our bed eating sandwiches, watching the Grand Prix racing.  Alan knows all about racing too.  He needs rest now, as he will be back on the courts playing in a couple of hours.  As the oldest man on this tennis holiday at 67, with three different health issues (cancer, heart irregularities and lung clots), he's doing well. He didn't expect to get on court at all.  But here we have the essence of Mr B.  Determination, spirit, and rising to the challenge.

We go home tomorrow, and back to chemo on Wednesday.  I will take Alan this week.  We will take our sandwiches in with us, and sit together amongst the drips and tubes and bleeps of the machines, alongside the other patients in the unit, and smile as we plan our next trip away.


My champ xx

Sunday, 12 June 2016

After the show, the silences

Part One

Sitting on my sofa in a pink dress with the rain falling outside, all seems as good as it can be.  I say that carefully. I've taken time off to relax, to rest, to recover and so I planned three days at home to stop.  If that is truly what I intended to do, to stop, then all the walls and bridges that one builds to keep upright and moving forward, all those rigid structures necessary to keep from stopping for a moment and noticing how tired you are, fall in around you.  The tight schedules needed to get things done, to take on more and more because you are on a roll and because you can, those tight schedules disintegrate and there is nothing to hold you up. And so, taking time off isn't about sitting down to watch telly while you file your nails and have an extra cup of tea, it is about having nothing to support your busy-ness any more and having all those walls and bridges crash down around you. You feel as if you have lost the plot and that you will never stand up on your own again.  It's quite a surprise.

Part Two


Me and Tash, my dear friend of over thirty years. Director and script editor and boss.
The A Graceful Dying One Woman Show ended a week ago today.  Phew. It has been a learning curve that I knew would be hard but not quite that hard.  It was hard because I required a few gentle metaphorical kicks up the bum to learn to focus and do things properly.  It was great fun too, and working hard with a dedicated friend and director has shown me just how amazing partnerships can be.  My dear old friend of over thirty years, Tasha Yarker, agreed to come and direct.  As with all new things, it wasn't quite as straightforward as two friends agreeing to work together and getting on with it. This was the beginning of my learning curve.

I wanted to do a One Woman Show.  During the Brighton Fringe seemed a good idea, so I found and booked a theatre.  Wonderful, so exciting.  I need a director, I thought, whatever they are, so who better than Tasha and bless her, Tasha with all her experience in the theatre, agreed.

I had begun to fund raise online for this show, and raised enough for Tash to come from Birmingham to Sussex to meet me and work on the show.  Oh how I looked forward to it!  I hadn't even a name for the show, and thought I would probably just make it up as I went along on the stage.  Tasha arrived and asked to see the script.  "I'll make it up!" I said, "as I go along!".  She asked what it was called.  "I have no idea!" I said.  Tasha was a bit quiet and asked me what the show would be about. "Don't know!" I said, then, "Dying! And death!"

"I'm going back to Birmingham," said Tash.  "When you have a show, call me."

I reluctantly agreed to write a script. I was hoping to sit in an armchair on stage and talk to people, making it all up as I went along.  If, said Tash, you want me to direct, you do what I say. When I tried to practice sitting in an armchair making it all up as I went along, I couldn't do it.  It sounded awful, and so I gave in to Tash and let her do her magic. I wrote a script that would keep me talking for three days and nights, telling everything, story after story, and gave it to her feeling I would never be able to do it.

Rehearsals.  Learn your script, says Tash.  Aaaaaw, says I.
From that first script, Tash eventually produced a script that I could understand, follow and learn. She created movement, atmosphere with music, ways in which to tell the story with different props  and she taught me how to speak more clearly.  Because Tash lives in Birmingham, we did many of our rehearsals over Skype, and I repeated my lines over and over again while driving, while shopping, in the bath, to salesmen in shops, to my Dad who has dementia.  "Do your lines while driving in the car," said Tasha, "and exaggerate.  Go overboard.  Ham it up."  Stuck in rush hour traffic on the A3 on my weekly drives to London and back to look after my father, I looked as if I was practising dreadful arguments with a pretend people in my car, with the windows up, as I shouted my lines with extra mouth movements and waved my hands in the air.  I even did it in a Scottish accent to see if that helped me learn them but it didn't.  The accent turned quickly into Hindu and then into a very bad rubbish accent that didn't belong anywhere. Then we hired Katie, our technician, forgot all our sound effects, couldn't load the films, sorted it all out and somehow, we got to our opening night.

Yes, it all went really well!  Yes, I forgot loads of bits on occasion but I managed to sort it out on stage.  The main thing for me was that people were actually there in the audience. I had imagined that I would do the show for seven afternoons to Tasha, Katie and my cousin Maddy, but in fact, loads of people came and I was really touched.  I felt as if I had so much to say, and thanks to Tasha I could really say it.

Just once all the technical stuff broke half an hour before I was due to go on. It stopped - all of it - and we had to delay the start of the show while Katie and her boss worked it all out.  No sound, vision or lights meant either giving people their money back or me going up onto the tiny stage and doing a small cabaret, a few magic tricks and a question and answer session on how to die well. Thank goodness that was not necessary, and Katie sorted something out. It went really well, and by the final night I knew my lines properly, knew all my cues and felt that I could, perhaps, do this.  I am surprised at how hard it was to do it, to keep going, and to remember everything.  I am also surprised at how much  loved doing it, loved meeting the people who came and how sad I am that it is all finished.


A photo from the show, all that hamming it up in the car worked.

Part Three.

And so now, I sit here on my sofa, shell shocked and exhausted.  It isn't just the show, though that was exhausting.  It is because a month before we opened, my youngest brother died.  I was there with him, we had an understanding that I would go up for the end, and it was such a precious time.  The day that Dominic died, another dear closest of friends received a terminal diagnosis, and I remember sitting with the nurse going through Dom's paper work and receiving this call.  It was as if I was attention seeking.  "What?" I said on my mobile phone sitting opposite the hospice nurse while going through Dom's death certificate, "terminal?  How long?  What?  Where are you?"

I realise that even if I wasn't a soul midwife, these deaths would happen.  That they seem to be arriving one after the other is nothing to do with me, but because I am a soul midwife, I will do all I can to do that dance with them as far as I can go, before they take the rest of the journey alone.  There is so much that is deeply personal about all these endings.  I am being shown something of journeys, something of endings and something of living in the shadow of dying.  I don't know how people do it, dying, I just know that they do do it.

So much learning, so much experiencing, so much to understand.


Dominic's grave next to Mum's.  This time last year they were both still here.
Part Four

Bubble baths.  The answer to my exhaustion lies in bubble baths, making a pillow mountain in my bed and watching police documentaries on YouTube. It lies in accepting that all the dreadful chaos and nonsense that goes around in my head now that I have stopped, is simply that.  Chaos and nonsense.  If my body is tired, my mind is very tired.  The best way to deal with that, I have found, is peanut butter and banana on oatcakes.  And pots of tea, and whole mangoes and huge bags of crisps and so on.  Indulgence I think, is a great healer.

I will take time this week to come down, and rise back up again.  The A Graceful Dying One Woman Show will be shown elsewhere, but as yet I don't know where.  The A Graceful Death exhibition will be showing again next year in Kent, for Dying Matters Week, so life, as we all know so well, truly does go on.

I am continuing to be a soul midwife in the community, because no matter how many shows, paintings, books and articles I do, unless I am actually doing the work, what I say will not be authentic.  I love my work though none of it is easy.  I am extremely grateful to be with the people I work with, and happy for the chance to have met them.  When I have got my marbles back, soon, I will go back into the studio and play with my paints.  Painting flowers is what I want to do, and painting big, yellow sunflowers is the best.

And now.  Back to where this blog began.  The sun has come out, the rain has stopped and the air smells lovely.  It is now the afternoon, and this is the best time for a bath filled with bubbles and glitter (you can get these things, bubbly glitter, you just have to be dedicated which I am).  A pot of tea, a jumbo packet of cheesy crisps and some more cops and robbers on YouTube on my phone.  My recovery may take longer than a week.  At this rate, months.

Grandma, let's have another packet of kit kats.



Now.  Fetch Grandma that cheesy wotsit mountain.  Thanks George. 

One of our review printed below for the A Graceful Dying One Woman Show

"An empowering life affirming experience"  by David Rumelle for Remotegoat on 01/06/16

This beautiful show is everything it says graceful,
life affirming, gentle, honest and sincere.
It takes a great deal of strength to write and
perform a subject so close to one's heart and
⋆ ⋆ ⋆ ⋆ ⋆
A Graceful Dying One Woman Show Review…
Saved to Dropbox • 11 Jun 2016, 11:24
personal experience but Antonia Rolls has given
this subject a soul an identity and confronted it
head on. Through it she gives an extraordinary
strength and comfort to an audience who must all
have felt the power and positivity passed on in
this unique presentation.
Drawn largely from personal "first hand"
experience ,on screen interviews, and an
amazing series of personal artwork- depicting
sincere images of friends, family and those
receiving palliative care this hour long
exploration has depth, warmth and sincerity that
brings an otherwise "taboo subject" and
unexplored territory out in into the open and
allows positive reflection in an eloquent and
empowering way.
The reason this presentation such a success is
that writer and performer-Antonia Rolls is not
afraid to push the boundaries and share the most
personal and soul searching moments surrounding
death and bereavement so the show never
becomes maudlin or self indulgent. In short it is a
positive "rock" that leaves us all with an inner
strength and solidarity.
As a carer and mid-wife Antonia takes us into her
confidence and her sensitive writing expresses
what we must have felt, or are feeling right now.
There is a tremendous element of group "healing"
here -in that a first hand experience is shared in
a strong, positive way but ultimately spiritual.
In short- this presentation is for anyone who has
experienced a parting, those who have wondered
how to deal with a loss or bereavement or anyone
trying to advise others. The best compliment one
can give is that the audience leaves feeling
unified, open and ready to talk and further as
indeed many of them did at this first
performance.
It succeeds on every level-and I would urge all to
view this experience"-because that's exactly what
it is-interactive,therapy and sharing at it's very
best.
  

Thursday, 19 May 2016

The Show Goes On. Rest, Dom, Rest


Dawn breaks on the first day of eternity


Fr Dominic Rolls, our youngest brother, at last resting.  White roses on his coffin.
The dawn broke today, as it always does.  I woke as I always do, listening to the birds outside beginning to sing, and watching, as I always do, the light coming in through my window.  But this morning I did not wake thinking about the funeral, as I had done over the last few weeks, because Dom had at last spent his first night next to Mum under the ground.  He seems to have gone home, not come home, but gone home.  Wherever Mum went, he has probably gone too.  I like to think that she came to collect him in the hospice room in Edinburgh, telling him that it was over now, it was time to come and rest forever with her and all the other souls that had gone before, in a place so wonderful, so amazing, so full of love and light, that he would laugh as he arrived, and thank her for bringing him here.  I like to think that he scarcely thought of the room he had left, the people in the corridor talking about him, the people everywhere in their homes, their work, their churches, praying for him with sadness.I like to think that he was so delighted and happy to be free of all the things that held him trapped, like his cancer, that he threw up his hands with joy and relief, and followed the angels (and Mum) into the arms of their God.

Yesterday and the day before, Father Dominic was honoured and prayed for in style.  He lay overnight in his beloved parish church of St Jospeh's in Dorking for a vigil mass before leaving the next day to his funeral mass at Worth Abbey.  My mother had seventeen priests on the tiny altar of her most precious church in Petworth, West Sussex.  That, we thought, was fab.  Mother, we thought, you have made it.  Dominic was one of those priests, and we were all so proud of the way he spoke about our mother.

Yesterday, at Worth, at Dominic's own funeral, there were one hundred and twenty priests, a Bishop and a Cardinal.  From his joyful place of light and laughter somewhere in another dimension, I like to think that Dom turned round and came back a little closer to all of us to see how wonderful this celebration of his life was.  The hymns, the readings and the location was planned, Dom did all that.  But what was unplanned was the outpouring of love, gratitude, respect and sadness from those that spoke during the service.  I hope Dom was listening.  "Ha ha," I can hear him saying as he and mum watched holding hands and laughing, "only seventeen priests? I win!"


Mum and Dom. Ha ha, I win!
This morning was the first of many mornings with Dom laid to rest, with honour, with tears and with love.  Dom has eternity now to contemplate, Mum has already been doing it for about eight months, so perhaps, they will set something up together ready for us, the rest of the family when we join them. (We need a break now, so I think we won't be joining you any time soon, if it's all the same to you xx).


The A Graceful Dying One Woman Show.

It was never part of the deal to be putting on a one woman show about dying while attending the death of one of my brothers, and helping to arrange his funeral.  That was never part of the deal at all.

A Graceful Dying was a long time forming in my mind, and I went up for a few days with Dom in Edinburgh to talk about it with him.  If he understood what I wanted to do, then it would be fine.  Dom was wise and thoughtful.  He told me to be authentic and to follow my heart.  And then, because he was Dom, he recorded a tiny piece for me, so that he would be in the show himself.

And now, the A Graceful Dying One Woman Show is nearly ready to be seen.  I took Dom's advice and have followed my heart. The show is about how we die, and really, about how I might do it.  I have no idea, when my time comes, what I will think or feel, and no idea at all where it will be.  All I know is I don't want to go yet.  No, not at all.  But if I do have to go, at least I will have tried to think about it.

I am very lucky to be working with my dear old friend Tasha Yarker, who I call the boss.  She is directing me, and has been able to edit the script with intelligence and vigour. I presented Tasha with a whole book to work with at first, it was so long and complicated.  But now, we have everything that I want to say, the stories I want to tell, the images, the films and the music in a show that makes sense to me, that is authentic and has totally followed my heart.

A Graceful Dying will make you think.  It is gentle, but honest.  There is humour, sadness, reality and resolution.  I hope you will think about your life as well as your death, I hope you will be very glad you came to see it.


Nushi, "Cancer Chic", from the A Graceful Death Exhibition

A Graceful Dying One Woman Show


30 May to 5 June 2016, 4.30pm

Sweet Dukebox Theatre, Waterloo Street, Brighton

 “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 believes that unless we look at how we may die, we can’t appreciate life. This year she is performing the powerful and uplifting A Graceful Dying One Woman Show as part of the 2016 Brighton Fringe Festival. Script editor and director is Antonia's friend of many years, Tasha Yarker, 
After seven years of working with people facing the end of life as an artist and a soul midwife Antonia has a wealth of experiences, insights and questions about the ways that people have faced dying. 
This show explores the art of dying through their stories, believing that until we are dead, we are very much alive.  
She talks about things other people don't want to talk about, and does so with honesty and humour.  Antonia is part of a powerful movement of end of life awareness and companionship with a wonderful network of colleagues and friends working in the same field, all of whom are a great support to each other.
Antonia is known to love tea and cake, and will travel miles for a proper afternoon tea with friends.  

“Very beautiful.  Thank you.  I think it’s the first time I've seen death dealt with in such a loving and fear-free way.  It’s a lesson I should have learnt when I was much, much younger”
Lizzie Ballantyne 2015

  “What a wonderful powerful day.  I am SO happy to have been here to take part and be part of the A Graceful Death exhibition and experience …Thank you so much for giving yourselves so fully. Deeply moving.”
Franky 2015

Book your ticket with the direct Sweet Venues ticket link below 



Monday, 25 April 2016

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 -


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. 

Thursday, 25 February 2016

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.

Saturday, 21 November 2015

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.