On not conforming, being creative and needing a platform.

Being creative and needing a platform. And not conforming because I booked this theatre slot before I had written the show.  Doing it all backwards.  

A few years ago I narrowed down my whole personality to three points.  They are

• I do not conform
• I am creative
• I need a platform.

Everything about myself is covered by these three explanations.  I was delighted at the time to have discovered my own formula.  What is more, I liked the formula.  I still do like it, and am going to add another that has come to my attention in the last year or so.  A number four.  Here is it is -

• I am a teeny bit rebellious.

I do not conform.

From an early age, having been born a fairy, I was at loggerheads with convention.  It was as if I had an inbuilt alternative agenda which made me look at the world with surprise.  There were rules, and there was a right way of doing things but, they were so obviously not applicable to me that I was

Me as a fairy.  

constantly astonished when I was told off.  Growing up, I was attracted only to the wild, naughty children.  I myself wasn't really one of them, I just thought they had a better way of looking at things and so I tagged along.  I liked how they challenged the rules and seemed to do what they wanted.  Many of them had very difficult home lives, and I did not. I had a lovely family in a nice big house where our dad used to read Dickens to us and Mum made lamb stew with pearl barley from scratch, and we had it in special blue plates inherited from lovely Irish aunts.  I knew many of the naughty children were responding to family difficulties, and sometimes I wished I had a nice alcoholic mum, or a dad in prison or something that would give me a reason to be naughty.  As it was, I simply drifted to the bad kids like a puppy, and thought they were all wonderful.  They all thought I was a hippy.

I always knew I was an artist.  In order to live as an artist, I had to stick to my guns and simply ignore the opposition.  There was plenty of opposition.  Getting a proper job and earning a living was the goal and I was encouraged to think of ways my art could be channelled into something practical and conventional.  I had a go at that from time to time, but it took the light out of me and never worked.  I am an artist and I have to follow a different path, one that allows me to step off it and experience life from outside.  Of course this freedom also enabled me to make appalling decisions and make a complete pig's ear of my life but, I survived.  And now, it is all worth while.  I am an artist, I am an artist extraordinaire, and I still have no intention of conforming.  (But I am very nice and well behaved, you don't always know I am not conforming until later when you think about it.)

I am creative

Being creative is not enough.  We need to express it.  People who either say they are not creative or who are ignoring their creativity fear that it is a messy business.  They fear it means getting covered in mess, in paints, in feathers, staying up all night chasing the muse, and dressing badly.  It is a challenge, a problem, and causes upheaval. It is about going outside our comfort zone. Once we understand that creativity is just about expressing ourselves, the pressure is off.  It does not have to be anything we don't want it to be, but it does need us to stop judging it, and just play.  And actually, it is quite safe to play and get a bit messy.

I am creative.  It isn't just about painting, or writing, though those are excellent ways of expressing myself.  It is about enjoying colour, putting lights and little statues in my garden, it is about wearing pink and matching it with pink earrings and lipstick.  It is about sitting and making sure everything in my line of sight is beautiful, it is about cooking all the things left over in the fridge, and tying my recently late father's shoe to his grandfather clock in my house, as a memorial to him.   

My creativity does not always wait for inspiration.  Sometimes, I let ideas work themselves out for a while but as it is me who will use them, I am proactive and at some point start work and enter into the unknown, the creative process, whether ready or not.  My creativity does not sit outside me, and I wait for it to show up so I can try and use it.  It lives inside me, it is me, and so I have access to it day and night.  It does not have to be perfect, it rarely is anything like perfect, but it will do.  I know I can use it and it's very nice to be such friends with it.  I will just add here that it gets better with practice.  I have to work for the finished product, it doesn't just happen as if I have no part in it.  I work very hard for my results, and that is part of the process.  If it goes well, then creativity and I have done well.  If it doesn't go well, it does not matter.  I will try something else, and have a cup of tea.

I need a platform

I do need a platform.  Oh I absolutely do.  What is the point, I say, of me painting and writing and thinking the way I do without you all knowing about it.  I am not a shy and retiring artist, I like to launch my stuff into the world and wait for you all to tell me how wonderful it all is.  Of course, that is not a given, you may hate what I do and wish me to get a proper job and a sense of propriety.  It does not stop me writing, painting and making videos though.  Here I go, lobbing You Tube videos at you, inviting you to exhibitions, writing books and blogs and, of course, creating daily Instagram and Facebook stories of my life.  

Speaking at an end of life conference.
Sounds like none of us left the
building after the conference, doesn't it?  

The platform I seek though is not simply about my work being seen and read.  That would be nice but, I am motivated by a great deal more than that.  How do we look at, articulate and explore difficult things?  There are times when we need to be challenged, inspired, comforted, entertained, reminded, or encouraged. I use my creativity to explore how we deal with death and dying and recently, how we cope with addiction; those are my difficult things.  I explore and share my experiences and I need, use and have platforms to reach as many people as I can.  I am compelled to do this, and to keep the things I talk about and paint authentic and truthful.  Using platforms to put my work out into the world is a good way of keeping myself in check.  There is nothing more sobering than the opinions of all the people out there who have access to what I do.  The platform I seek is a relationship with everyone who comes across my work and who may resonate with the experiences and stories I use.  It is not a "me and you" thing, it is a "we and us" thing.

A teeny bit of rebellion

This has evolved as I get older.  I have noticed other older people simply not doing things they don't believe in.  My Irish grandmother, a small lady, would wear my very tall grandfather's huge overcoat when coming back from a visit from Ireland to the UK.  She would stuff the pockets with ham, whiskey, sausages and beer and clink her way through customs with some of her seven children.  Just before customs she would clip one of the children around the ear and the resulting chaos would mean she would get past customs without being checked.  Another time, when my boys were about six and nine, my mother smuggled them into France on a pilgrimage bus bound for Lourdes.  She hadn't time to get them passports.  Leave it to me, she said.  The arch bishop was on that bus, and mother shoved my boys behind him as he walked past customs, saying that they were with the bishop.  They got in.  The bishop had no idea he led two little boys into France illegally on his way to a holy pilgrimage to Lourdes, where Saint Bernadette saw and spoke to the Virgin Mary.  

And now I am on my way to the same kind of behaviour.  I can't give you examples because I will possibly get into trouble, but in each case I believe common sense and humanity has triumphed over silly rules and face saving protocol.  There.  That's a bit of rebellion for the common good, but I have yet to smuggle legs of lamb and children across borders.  

Not my actual grandmother but same approach to life.

My website is here - www.antoniarolls.co.uk

To subscribe to my You Tube click here   https://www.youtube.com/channel/UCPwvjunRhjo_wtfk8z2xKMA?view_as=subscriber

To subscribe to my newsletter click here 

https://mailchi.mp/antoniarolls.co.uk/signup-for-news-of-events-and-sessions

As Mother Lay Dying, the book.

My book will be available on YouTube chapter by chapter.  More below.

RIP Vanessa's Dad.

Vanessa, my PA who helps me with my newsletter and so much more besides, lost her father two

Vanessa's mum and dad on
their wedding day in 1967

days ago.  For this reason, there is no newsletter on Tuesday.  

Vanessa moved into her parents' house at the beginning of lock down to work, help look after her father and to support her mother.  I do not know the family, but I do know that her parents were married for a very long time and that the whole family is close and loving.  Vanessa's father died peacefully the day before yesterday as I write this, and, I think, quite quickly, with Vanessa and her mother, and maybe other family members present.  It was good, she said, it was even wonderful.  And so, the blog this week begins with a small memorial to him, in solidarity with Vanessa over a father's death.  My own father died, as many of you know, five weeks ago.  We both had wonderful fathers and my heart goes out to her, she really loved him and, I believe, he really loved her.   

RIP Errol John Stagg.  My you rest truly, and joyfully, in peace.

As Mother Lay Dying.

In 2015, my mother was given six weeks to live, with a diagnosis of pancreatic cancer.  I shut down my life in an afternoon and moved in to be with her, to walk as far as we could together for this final journey, both knowing she would have to do the last bit on her own.  Time changed for all of us then.  The family and friends coming in to say goodbye to her, the days and nights of her gentle breathing declining and the memories of all those gone before her, all this kept us in a space where there was no future, just the past and the present.  

I had been helping to support people facing the end of life for a good few years then, but now with this sudden realisation that my mother was dying, I did not know what to do.  My mother knew me better than anyone else in the world.  I could not sit beside her, listen to her speak, and then go home.  I could not hold her hand for a while, and then hand over to her family, I was her family.  We lived in the same house now, for the duration.  And I looked like her.  I sounded like her.  Our relationship had never been easy and now, watching her die, I imagined that we would talk about our painful differences and resolve them through words.  Instead, nothing was said.  The peace that had eluded her all of her life settled on us both, and in the end, love was all there was.  Just love.  

The book of this time, of waiting of watching and of witnessing, is now finished.  I have called it "As Mother Lay Dying".

Part one “The Dying”, accompanies my mother as she faces, day by day, the end of her life.  The house is full of people and flowers, and at night, when everyone has gone home, the silences seem too long and too dark.  Part two, “The Bereavement”, talks of the strange emptiness after the wake and the funeral are done, and my mother's house is silent.  I do not know what I feel, and I can’t find her anywhere. I go back to my world and find that I miss her.  In part three, “The Recovery”, I talk about grief, and the many ways it manifests.  For this part I draw on my own observations, stories and experiences of working with people at the end of life. It is hard to articulate grief and our actions can speak for us.  This section explores some of the different, and surprising, ways I have seen grief manifest while working in the community with end of life.

Below is the first page.  There is a reason for sharing this, and I hope the extract touches you. I aim to read the whole book on my YouTube channel, one chapter at a time, and upload it over a week or so.  It will then be available for anyone, at any time, to hear it read and to listen to as much or as little as they want. 

As Mother Lay Dying

CHAPTER ONE

Last week there was no diagnosis. This week there is terminal pancreatic cancer, and I have been uncharacteristically swift and efficient.  I have sorted out my own house and moved into my mother’s house with just a small suitcase, until I am no longer needed here.

I am waiting in a chair at the end of my mother’s bed, so that we can see each other when she wakes. The big comfortable chair that I put next to her bed can’t be seen if she is sitting up.  She would be looking ahead in that case, and talking to a disembodied voice behind her.  I will leave that first chair, the big comfortable one, till later, when she is near to death, and won’t know where I am sitting, only that I am somewhere near her.  At least, that is what I intend.

There were times when her face fell into itself today.  Her mouth drooped and her chin dropped.  When she is feeling able, she is in control and very present.  When she drifts off to sleep, which she does all the time, her energy is gone and the power is diminished.  Her small frame is vacated.  Her face is pale, her mouth is dry and uncomfortable, and her stomach hurts.   Mum’s face is soft to kiss, and hot and smooth.  I smell bad, she says, but I tell her she doesn’t smell bad.  Not at all.  It is just that she needs to use the loo so much and can’t keep any food down.  I think she feels smelly, but she really isn’t.  Mother is fragrant.  Since word of her illness has spread, she has been inundated with beautiful scented soaps and creams; she washes in the most wonderful rose scented, honey extract, vanilla infused bath oils, and she is truly fragrant.

I am sitting in one of her lovely little Regency chairs, at the end of her bed, downstairs in her dining room. Mother’s home sits high up above the Sussex Downs with a conservatory overlooking the Shimmings below, the green and gentle countryside of the Shimmings stretching out for miles just beyond her front door.  Mum likes to sit at her breakfast table in the conservatory watching the tiny horses in the fields and copses miles away, and the clouds and sky moving and changing over the landscape.  She likes to spend time at her little table by the window there, looking out over it all and feeling peaceful.  I am here in her house to look after her while she dies, I have moved in for as long as it takes.  I am learning how this experience of dying is different from others I have witnessed.  I am still not the one doing the dying, I'm not medically trained and I don’t know about the drugs that can help her symptoms, I am not a stranger coming in to offer my little piece of time and love.  I am my mother’s daughter; I am my brothers’ sister and my children’s mother.   I belong to the people directly concerned with this dying person, I am in the middle of it and even if I walked away wanting to have nothing more to do with it, all this dying that Mum is doing is known and felt throughout my entire extended family.  The whisper of it is in everyone’s bones.  She is the next one, it is her turn now.  Each of the old aunts and uncles, each of the grandparents, each of my mother’s siblings that has died, have managed it.  They faced it and got on with it. We all watched and visited those we could visit, and regretted and wondered about those we didn’t visit because they died quietly without anyone there, and we cried when they had gone.  We wondered how they were doing it, those that we did see, and we all hoped that we didn’t have to do it ourselves for a long, long time.  If ever.  We loved the aunts and uncles that have gone now, remembering how they had made our childhood magical.  They were young and strong then, when we were children, my brothers and my cousins and me. 

 Please have a listen.  It may be something you are going through right now, it may be something for the future.  It may be something you are very interested in, and want to know more about. You can hear the first chapter here, chapter one As Mother Lay Dying

Another Addiction painting finished

I haven't been painting much recently.  There is much still to do, but I have not felt very focused.  Last

Marie as the crazy party lady

week, I decided that if I made a YouTube video about finishing the current picture, that had been patiently sitting in the studio for the past month or so twiddling its fingers and not complaining, then I would have no excuses.  It was a grand way of actually doing some work, in that it was much more complicated having it be the subject of a video, but it worked.  The painting is done, and I have a video about it too.  You can see the video here .

These paintings of Marie show her as she was, when she was taking drugs, and now, when she is not.  She has come a long way, and I wanted to show the difference between then and now.  The crazy party lady, with wild jaundiced eyes looks amazing, but a bit mad.  The painting of her now is filled with dignity, peace and calm. I know Marie as she is now, and understand how much she has achieved.  She is, it is worth saying, a magnificent artist herself.

Calm and serene Marie now

I will begin the next painting for the Addicts And Those Who Love Them exhibition this coming week.  It is of my friend Michael, and his once long suffering partner Martin.  For many many years, Michael was an alcoholic, completely out of control, and without boundaries.  Martin stayed with him, somehow, throughout, and now with Michael clean and well, they are inseparable. This painting will be joyful.  It will be the two of them together in each others arms, it will make us all smile.  

And one day, perhaps, when the madness ends, we can have this exhibition, and show all the paintings, all the words and all the stories together on one place.  Hang in in there, friends.  Even if I have to show it all in my house, we will have this exhibition. 

And so 

Keep an eye open for the next chapters of the book As Mother Lay Dying.  I will try and upload a chapter a day for the next couple of weeks.  There are twenty chapters.  I am so enjoying doing this, and I hope you will enjoy and be moved by the book.  Please let me know what you think, and either leave comments here on this blog or directly on the YouTube comments section below the videos. 

As My Most Beautiful Mother Lay Dying.

subscribe to Antonia's newsletter  Subscribe to Antonia's You Tube channel  Antonia's website

Death. There's a lot of it about.

There's a lot of it about.

Deaths

A young plumber came to mend a leak in the kitchen after my husband Alan died in 2016.  "Death," he said with a shake of his head, as if this was unreasonable, "there's a lot of it about."

I don't think he had experienced many losses, I don't think that dying had happened in his world, and so when he heard of other peoples' experiences, it seemed that death was just getting a bit above itself.  Slow down, he seemed to imply, just one at a time and in an orderly fashion. 

We all know that death is a part of life, that death doesn't follow a protocol, that death will do what it wants when it wants.  We all know that it happens, and though we know theoretically we will have to die one day too, we don't really believe it.  Not really. And yet, people we know die. Even people we love go, and sometimes, family members pass on and so, yes, there is a lot of it about.  I remember when my partner Steve was diagnosed with cancer in 2007, saying we will beat this, and somehow, because I loved him I thought we would.  It was inconceivable that such a thing as love could be bested by such a thing as death.  Light and dark, I thought then.  Light always wins.  But Steve did die, and watching him fade away despite my love and despite it being unfair, changed my world for ever.  In a way, I had to grow up.  I had to experience something beyond my comprehension in order to show me a deeper more profound version of this life.  Steve's death was the single most traumatic event of my life, and probably still is.  I was thrown into a grief and confusion that marked the beginning of the rest of my life, and my decision to work with endings and dyings in the way that I do.  That grief was so mind altering, so hard to bear, that all my understandings of this world had to change.  But it also unlocked my gift, and though I did not want that gift and would have thrown it back if I could have in the beginning, I am grateful for it now.  I often say that Steve came, gave my my job to do, and left.  

So now, deaths.  What good are they?  I absolutely do not know, but the thing is, they happen twenty four hours a day seven days a week.  Making or finding meaning in them, is an ongoing process for most of us.  I have seen many deaths through illness, I have experience of suicide deaths, and I have personally experienced miscarriage.  However, there are many, many ways for us to die. Here is a list to be going on with. 

Illness, suicide, murder, accident, miscarriage, abortion, war, execution, euthanasia, act of God                                                                                                                                                                                                                                                                               

Most of these I have no experience of, and though I accept that death is a given, such things as

Help. Don't make me do it.

execution, war and murder really scare me.  Perhaps it isn't the fact of death so much as the manner of dying.  Murder, war and execution seem to involve cruelty and suffering from the hands of other people that is entirely avoidable, man made and inhumane.  And yet, what I have been trying to do is, where I come across it, to make the manner of dying more calm, more loving and more acceptable.  I have a terrible fear of visiting a death row, an execution, and hope to goodness I never have to do that - it is indescribably unlikely in my little life here in Bognor Regis, but I have learned that the world is utterly unpredictable and just because you fear something does not mean you are safe from it.  Though I imagine I am safe from this.  But you never know. Help. 

Dyings

Over the years, I have learned to occupy very little space in the room of a dying person.  I remember when I began learning about how people go and what they do, and what I should do, feeling that I should be doing something, I should somehow be indispensable.  It was up to me whether they died well or not. I worried that I could fail at this, and that everyone would see that I was a fraud and did not know what I was doing.  (I did not know what I was doing in those days, absolute fact.) I knew there was a place for people like me, who were drawn to make a small difference to the dying process, but I had no idea how.  For some reason, I felt I ought to know instinctively and that it was all about me making them feel better.  It was about me doing a good job.  It was about me.

Fast forward and this is how I see it now.  Unlearning the above was a valuable part of the process.  It is not about me, and I do not have to get anything right.  I just have to do my best and if it is not what is needed, I can leave.  Mainly, the dying are doing their own thing.  Our job, if we can, is to create a harmonious and loving place for them to do that.  And often we don't have a choice about where that is.  It could be anywhere.  (When I am asked where I would like to die, which I sometimes am, I say I have no intention of dying at all.  But if I have to do it, and as a well person I chose a nice meadow in the sunshine, I may at the time prefer a hospital with all the right equipment.  I may not want to die in a tea shop having afternoon tea because it will be messy, though right now I think it would be a lovely way to go.  My point is we don't know, we can only guess.  And fate may mean we have little choice anyway).  If it isn't about me at all, then I am relieved of the burden of success and failure, and I am relieved of my ego.  It is not all about the dying person either.  It is about all of the people in the room.  If others are there, they bring their energies and beliefs into the mix.  If someone is struggling, they need support.  If the dying person is struggling, they need support. If no one is struggling, then the family or friends there will manage.  They dying person will manage.  Where someone like me comes in, is to support whoever needs it.  When someone is dying whether over a long time or a short, difficult questions will come up.  Unwelcome emotions will arise.  We may have profound conversations and we may have some wonderful, enlightening moments.  We may be unable to resolve old hurts, and we may argue and fight.  We may do a mixture and all other things in between.  And if for example, the illness changes the dying person's personality, then the whole dying process may be unpredictable and difficult.  A man I knew of with a brain tumour became very aggressive and took over the ward.  The police had to be called.  I don't recognise this person, his wife said, this is not him.  A few days later, he died.  And the moment of death, that moment many of us feel we have to witness for our loved ones, may just happen when we are not looking.  The moment of death, that last breath, may well be so silent that no one notices it.  

I held my mother, and my father, and my husband as they died. Steve died just before I got there, and my brother Dominic died when I left the room.  It was really lovely to be there for Mum, Dad and Alan's last breath and a bit sad I wasn't there to witness Steve and Dominic, but because it is not, actually, about me, I can let that go.  People die when they die.  I thought Dominic was actually dying a few days before he did, and I told him to let go and go when he was ready.  I was convinced he was on his way, and after a while, when he didn't go, I felt a bit foolish and went and had a cup of tea.  Sorry, Dom, I said.  When he did go, a few days later, it was on his own terms and in his own time, and it was when he was alone.  

Here is an account of how dying involves loved ones too.  

As a volunteer on the local hospice wards, one of my roles was as a patient companion when there were no family or friends for a dying person.  One afternoon I overheard an exasperated lady talking about how her neighbour's husband was deeply reluctant to come and see his wife, ever, and now she was actually dying.  I jolly well made him get into the car, she said, and forced him.  He's outside her room now, she said angrily, not going in.  I give up. 

 I remember thinking that he must be very frightened and being angry with him won't help.  I was worried and went looking for him.  I found him sitting on his own looking terrified, lost and small on a chair near his wife's room.  I began talking with him, and he talked about everything and anything that he could, but not ever about his wife, dying in the room next to him.  After a while, I said to him that I knew his wife, and that I had had many good conversations with her.  Would you mind, I asked him, if I went and said goodbye to her?  After a pause, he said that he would take me to her.  And he got up and  walked into her room.  Surprised but delighted, I followed. "Hello dear," he said and bent over her. "It's your favourite husband.  I have Antonia here who wants to say goodbye to you."  With that, he walked around her to the chair beside her bed on the other side, and sat down.  I said goodbye to her gently and thanked her, noticing that the husband who had been so afraid, was now sitting and holding his wife's hand.  I left the room, and she died a little while later, her husband with her.  All he had needed was someone to be kind to him. 

Was the angry neighbour right to force the husband into the hospice?  Was the ending a good one?  In the end, she was instrumental in helping the husband to overcome some very deep fears, but what if he had remained panicking, alone, outside her room and missed her death?  We just cannot know.  What I understood from this experience is that the dying wife was fine, all that could be done for her was being done.  It was the husband that needed the helping hand.  It was, for a while, only about him.  It was a happy ending in that all things came together, the wife died with the husband holding her hand, and he no longer isolated and afraid.  

Dad.

Dad died three weeks ago today.  It feels as if eighty eight years have gone in the blink of an eye, and here we are already three weeks into his eternity.  Every time someone I love dies, I get lost in the not knowing.  Same now with Dad.  Where did he go?  I don't know.  Why didn't he wait to die here like I had planned?  I don't know.  Why did he have to suffer cruel and avoidable isolation and loss from us, and then die on a stretcher?  I don't know.  What does it all mean?  I don't know.

It is up to me to make my own sense of this.  I am not grief stricken.  Dad was dying for a long time with Alzheimer's and Dementia.  I had years to say goodbye, and now that I have said it, I feel alongside the sadness of losing him, a feeling of freedom and expansion.  I miss him, but I feel lighter.  He has done it.  He has gone, shooting off on the tails of a radiant, blazing star, up to Heaven where everyone is cracking open the red wine, waiting for him to join the party.  There is nothing more for him to do here, no dying no death no waiting.  No living.  He has gone to join his friends and family and I have waved him goodbye.   I will plod on down here, living and doing my best but I still have it all to come.  I have no idea when it will be, how it will be or where it will be.   One thing I do know, other people have not paused in their dying because Dad has gone.  Hey ho.  There's a lot of it about.

Still happening. 

subscribe to Antonia's newsletter

Subscribe to Antonia's You Tube channel