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Wednesday, 14 June 2017

A ball of light in my room. Feeling the grief.

Recently, I dreamt of Alan, my husband.  He was standing a little way back from us, on a path, concentrating on his phone.  Don't disturb him, I said in my dream to my companions on this path, he will come when he is ready.  I knew in life how he could be overtaken with his phone and I knew that we should not go near him in the dream, that he would come to us when he was ready.   The dream ended then, leaving him forever on his phone, and we forever waiting.

And then, another night, I dreamt I was part of a studio audience at the filming of a television show.  My part of the audience was to ask questions.  Next to us was another group of more important people to ask questions and in that group I knew was Alan.  I was not allowed to see him, he was hidden from me amongst his group.  I tried to see him, but I couldn't. I knew he was there.

I feel as if I am in water.  I am very deeply under the water sometimes, but I can breathe, so that's good, but the light is very far above me.  It is silent and slow down there and I can be bumped and jolted on the stones, caught in the rushes, tumbled about in the flow, or I can just lie still.  Sending little bubbles to the surface, not caring how I got there, not wanting to move.   When not far down under the water, I can break the surface and look around me.  Goodness, I say, look at all those people on the land.  I may swim and splash around, but I don't think of leaving the water, I am comfortable here.  I don't choose where I am.  I wake up in different parts of this stream, river, sea, ocean and take note that right now, I am here.  I am here.  It feels strong, it feels slow, it feels deep, it feels shallow.  It feels terrible, it feels calm.  It moves me against my will, I move freely of my own will.  It is warm, it is cold.  It is where I am for now, for however long it takes.  Perhaps for ever.

I am half way through my year off.  I have taken a year away from everything so that I can remember, think about and mourn my mother, my brother Dominic and my husband Alan.  Three losses, three deaths, I can't work out which one to focus on.  It is hard.  All three are a jumble of images, memories, regrets, I talk to all three and feel that sometimes they are there, but most often that they are not.  I think of Mum, and Dominic floats by.  I think of Dominic and Alan appears.  I think of Alan and Mum walks past.  This time is full of confusions and I am powerless to change it. 

I knew that I would have to face these losses.  I knew that it would be hard, and I would rather not have to deal with it. In the past, I would move on, get busy, have a time limit, and hurtle through grieving, through difficulties, to the time limit and beyond, wiping my hands on a cloth and telling myself that I have done a good job and now, thank heavens, it's time to move on.  I don't like depression, misery, sadness and tears.  Looking back, this avoidance has done me no good at all.  Sadness, experiences, losses, all the things that mark our passage through this life we live, need to be acknowledged, need to be noticed, need to be addressed.  If we don't, they come back to bite us.  We can't avoid pain.  Theoretically, I know this.  Now, I am feeling it.  I would be mad not to, I was part of the dying as a soul midwife, a daughter, sister and wife. My daughter and I held my mother as she died,  and Alan's brother and son and I held him as he died.  Dominic died when we had left the room so briefly, and there was only him and his beloved God.

I am letting it all happen for the first time, I am allowing myself to sink with this grief, and I welcome it.  It says to me that I have loved.  These people I have lost are worth this sorrow, and this is my offering to them.  To feel the depth of their absence, to come to understand who they truly were, and to remember, remember, remember. I have let go of my work, my timetables, my plans.  I can't keep an online story going on social media, I no longer read anything to do with soul midwifery, end of life, grief or art.  Floating under water like this, I cannot easily think of many things to say, and so I don't make much effort to speak to new people.  Or old ones. 

In this way, I am obliged to spend time alone with myself.  I am obliged to hear the things running through my mind, to notice how my body is feeling, and to take my inner life seriously.  Silence is a great teacher.  How can I know how to do this grieving, I tell myself.  How can I know.  There are times though, when I understand something, I understand suddenly why this is all fine and I am fine within it.  Then there are times when I doubt myself so deeply that I feel my own life is coming to an end.  When I am peaceful, these things make a gentle sense, when I am confused, I do not know where to find relief.  But all things are passing, and these things flow away from me and I am ready to find a place to rest and to breathe again. Physically,  I have developed pains in my arms and legs that sometimes make walking difficult.  My body does not work as it used to, and this is exactly how Alan used to be before he became ill.  He would complain of the same things as I have now, though his was because of his passion for sports and for pushing himself far too hard.  I feel I am imitating his body. I know this is a grief reaction, it feels very strange, and there are times when I don't feel any pain at all.  But because Mum, Dominic and Alan were such good people, I am safe in this whirlpool, in this unfamiliar place of pain inside and out.  I will not come to any harm.  I will come through.  I hope.

I want to spend time with Mum, Dom and Alan.  I want to meditate so that I can hear them, I want to fall asleep so that they will come in dreams, I want to ask them questions, and have them find a way to answer.  They are not here.  They are not here.  But sometimes, I think they are here.  I woke in the night recently and looked up to the corner of the room.  I knew something was there, and was not surprised to see a gentle glowing ball of light. Oh! I thought, that is there to comfort me.  It's Mum, I thought smiling, as I turned to sleep again.

There is great comfort in my world too.  My friends are so kind, and my family and Alan's family are feeling exactly the same loss as me.  We support each other.  We are not alone, I am not alone.  I am surrounded by kindness and understanding, surrounded by sensitivity and acts of generous compassion.  This helps so very much.  But no one can walk another's path for them and having taken this first year off to let the sadness happen, I must then let it happen.

I dozed off a few days ago and in my semi dreams I saw Alan sitting in my new room at home on my new bed, laughing, laughing with sheer joy.  I came to, smiling, and will keep that image of him forever now, as how he is to remain in my memory.  And I have taken possession of Dominic's old bed, in which he slept for twenty years.  It was made for my Grandfather about ninety years ago.  It is a large, dark wood, very high off the ground single very old fashioned bed. 

The night after Dominic died, I left the hospice and went back to stay overnight in his rooms at the Cathedral in Edinburgh.  Dominic was a Catholic priest.  Oh do not make me stay in his bed, I thought, do not make me do that.  But there was no other bed for me to sleep in, and so I climbed into the sheets that Dom had left a week ago, and lay in the shape he had left and thought that I may never survive this.  But I slept instantly with a peace and depth that left me in no doubt that this experience was not one of tragedy, in his bed, but one of joy, a gift and of love.  And so, now I have Dom's bed in my house, delivered from Edinburgh.  I sleep in it and I sleep very well.  Soon, when my new bedroom is decorated, I will leave Dom's bed and join Alan as he sits on my new bed, laughing with his head thrown back with sheer joy. 

And in the corner of my new bedroom, my mother will comfort me during the night with a gentle golden ball of light.


My Alan and me xx

My beautiful Mother x

Dom! xx

     Let nothing disturb thee,
Nothing affright thee
All things are passing;
God never changeth;
Patient endurance
Attaineth to all things;
Who God possesseth
In nothing is wanting;
Alone God sufficeth.

Saint Teresa





Monday, 20 February 2017

Love is all there is

Prologue


Recently my body and soul had a chat.  My mind was present but not listening.  My body had stern words for my mind.  You are not listening, said my body, and so I am going to break my foot.  And if that doesn't work, I'm afraid I will have to have flu.

So be it, said my soul, love is all there is.

La la la said my mind with its fingers in its ears.


The love affair continues


It is three months since my husband Alan died.  It is nine months since my brother Dominic died, and sixteen months since my mother died.  It was my gift to soul midwife each of them, and their unutterably precious gift to me to allow it.  To give as much as we each gave to each other as the dying happened has wiped me out to the extent that I have offered myself a year off to make sense of what it all means, and to understand who I am in the process.  I am, in other words, pooped.  Mentally, physically and emotionally.  Spiritually, I am being asked to stand back, consider, and remember that love is all.

Love that goes out to others needs to come back to me too.  The greatest lesson now is to acknowledge this, to make a decision to love myself, and to take all the time that is needed to understand what this means.

Love is good.  Of its nature it is only good.  To love yourself sounds enlightened, but actually doing it feels awkward.  It feels self indulgent.  To love oneself means doing in a little light narcissism.  Loving oneself and not becoming too antisocial looks a bit like this.  I will love myself more, I won't let other people get to me.  I will accept myself as I am and be kind to myself.  Early nights, no more puff pastry, and seeing the good in everyone. And that is it.  Having said that, it is enough.  We carry on as before.  We still don't know who we are, we still don't listen to ourselves and we certainly don't think of giving ourselves time.  If I was to say these words to someone else, I would follow through with time, action and intent.  If I say them to myself, I simply cannot.  Or so I think.

If I am to truly love myself, I need to know who it is that I am loving.  I know who I appear to be, I know who I want you all to think I am, but in my quiet moments, who really is Antonia? Have I asked her what she needs?  If I say I sit in silence with her, can I hear her if she speaks?  Do I listen?  Do I care?  Who is that person I have made a commitment to love.  I am so curious, I think despite all I have been taught to believe, that she may be really something.

If I am to practice love for myself, I must take the time to find what works.  I must focus my attention on myself.  If I am surprised that instead of being happiest as the centre of a large crowd, I am lost and lonely, then I was wrong about what I thought I liked.  Perhaps I feel safer on my own.  I didn't know that.  Well, I do now, and I am amazed.  What else do I not know? 


Time and space


My year off is in its fourth month. This is about recovery, finding the way back to myself, understanding where I am in all that has happened.  It's very hard to know exactly what it is that I am not doing in order to have time off.  There is always so much to do.  Nature abhors a vacuum, and so not going into the studio, not painting, not soul midwifing, not writing, not doing AGD or one woman shows creates a space which I willingly, enthusiastically, fill with something else.  Bring it on! My mind says, let's keep busy! So time off becomes simply not doing one set of things, and doubling up on all the other things.  This is when my body stepped in and threw me down the stairs. 

I fell down the stairs early one morning.  I knew I had broken something because of the pain.  If I lie down for a minute, I thought, and take two paracetamol, I'll be fine.  I was taking my grandson to his playgroup that morning, and I couldn't under any circumstances, not do that.  So I thought, if I put my boots on, it will contain my badly swollen foot.  Excellent.  I managed to do that, and spent a difficult day hobbling about.  I think I have broken my foot! I said to everyone, Ha ha ha!  No one else thought it was funny.  I must have looked pitiful as I tried to carry a large one year old around as if I could walk properly.  I'm glad she's not my child's Grandma, the other mums must have thought, she's potty.

A week later I went for an X Ray.  Of course it was broken.  I had spent a week pretending it wasn't and suffering for some obscure reason that I cannot fathom.  It was the day that I got the special broken foot boot that my body said, in exasperation, and now it's time for flu. 



Still life with broken foot.

I thought I was dying.  I don't remember having flu before, ever, and so didn't know what it was.  I dragged myself to the doctor expecting him to diagnose Ebola, but he simply told me it was flu, to go to bed and stay there for a week.

In bed, in my lovely clean, soft, crisp white bed, I gave in.  I sank into the comfort and surrendered.  I cannot move, I thought, I cannot think and was aware that this is what I wanted all along.  To do nothing, to be still, to be incapacitated.  And then I heard my body's message.  I have done this for you, it said.  Your mind has been in denial, you have been in denial, and now you must stop.  And so I did.  I let go.  I lay there for a week, my foot on a cushion, and slept.



The sick bed, with treats provided by lovely friends.  Managed these biscuits bravely.


Now, the spaces left by stopping work are still empty.  I am looking at time differently.  The morning will come, the afternoon will come, and night will fall.  If I do nothing, and time goes by, and I watch it go by, it doesn't matter.  I sit in my chair at home and think of the things I would like to do in the home.  The day will come when they will be done, the day that they are done is just a day, and when the things in the house are completed, there will be another day.  Everything that happens is just a moment in time, is over, and time continues.  I like sitting with myself, I like seeing how I feel about things.  I like the freedom to watch the minutes, the hours, the days go by.  My mind can hear my body and vice versa.  They like the harmony when they work together, which takes patience, attention and perseverance because my mind loves to go mental so to speak, and create disasters and misconceptions and judgements.  And my body likes fried foods and cakes and if it could, it would fry cheese and eat it all day.  If allowed to go off on their own, both body and mind will make a nonsense of the other, it takes conscious effort to keep an eye on them both.
 


A space to watch the time go by and keep an eye on the mental cheese frying


What my soul says


Watching all these goings on, my soul makes itself a cup of tea and smiles.  All this, it says, is already known.  You are learning nothing new, you are simply remembering.  Oh you are so good at obscuring things, at complicating things.  I am often speaking to you, and because you doubt my simplicity, and because you think that complicated things are more profound and better, you don't listen.

Love is all there is.  If you send it out, you must allow it back.  Love does not have favourites, it does not judge, and it has no needs.  Love simply is, and I am filled with it, for you, and for everyone around you. 

My soul stirs its tea and pauses.  We are one, you and I, with your body and your mind.  I am always here, always watching and always in love with you.



What I say


Blimey.



Happy she's not my child's Grandma.  George and I are very happy with our FaceTime chats.
(Thanks to George's Mama Lexi for taking this) 



Sunday, 18 December 2016

On falling in love

Chapter One

I have decided to be in love.  There is someone I know well, but am not always very nice to, who could do with some attention.  To mark this rather revolutionary thought, I decided to cook a wonderful meal.

When our lives become difficult, when we face losses, setbacks, upheavals and sadnesses, there is one person to whom we tend to be unkind.  There is one person to whom we speak roughly, and for whom forgiveness and tolerance is slow in forming.  This person suffers terribly from not only the situation in which they find themselves, but from dismissal and lack of kindness from ourselves.  We judge them faulty and we refuse to give in.  This is the person I have asked to my dinner.

Antonia, meet Antonia.  She's an old friend, and someone you could really love.  In fact, falling in love with her is probably the best thing you could both do.

The person who could most do with our kindness, tolerance and forgiveness, is ourselves.

Sitting on my sofa, sitting on Alan's sofa, I decided to fall in love with myself.


The place where the love affair started


Chapter Two

Alan died eight weeks ago today.  We, his family and I, have had eight weeks without him and we are doing well.  I am doing well, I have given myself time off to rest and recover in Alan's house, and that is what I am doing.  I have a list of things to do, all of which are about not doing.  I'm not going out.  I'm not doing anything I don't want to do, I am not answering the phone and I am not ready to be involved in the world outside.  Most definitely I am not stinting on butter and cheese.

But living here, inside, time moves slowly.  I can do things like watching television, like making tea, like having a bath, these are good things and they are about recovery.  There are many excellent things I can do to make myself feel pampered and I can give in to all the things I want, so that I can please myself and take some of the hardness out of the fact that I am a widow.  So.  Mince pies are the answer.  I eat six and that was very nice and after they are finished, nothing much has changed.  Alan isn't coming home. Another six and I begin to doubt mince pies are the answer.  I don't look forward to them much now so perhaps they were only temporary.  The same with television, despite being able to watch back to back police car chase documentaries which I love.  After many days of this, hour after hour, my back hurts and I know how to be a cop, and still I have to turn off the television.  I still have to experience the silence after the show, I still have to walk from the sitting room to another room, and in that action, step back into the fact that I am here, on my own, and somehow this rest and recovery that I have wisely decided to do, is in fact nothing but long periods of nothingness.  I don't know what I should be doing, not really, except that I can do anything that I want.  What do I want?  Well, I want to feel less awful.

I can do my crying and I can feel huge gatherings of grief in my stomach.  I can speak to my family and friends and they are good and kind.  Sometimes I am so blinking angry with Alan for being such a difficult person when he was alive because now I can't do anything about it.  I can't go back and give him fantastic one line answers to make him gasp in admiration.  I can't go back and win, which would have made me feel much better at the time.  This makes me point my finger at his photo on the wall and tell him off.  He just smiles back at me, and so I stop and think, as usual, that didn't work.

Sometimes I remember just how kind he was and I am horrified at how I took it all for granted.  Sitting in his house with all his things, without him, I begin to understand how much he loved the view from the sitting room over the Sussex Downs.  I begin to understand how brilliant it is to spend a whole evening watching telly, which is what he loved to do and I hated.  I don't watch television and thought (until now) it wastes time, and so I huffed and puffed and did other more worthwhile things but he wasn't bothered.  I'm fine, he would say, and when you're ready come and watch this amazing programme with me.  Huff, I would say, I'm busy being productive,  I will give it some thought after this virtuous thing I am doing is done.  And now, I am doing the same thing as Alan did, on his very sofa, and loving it.  Damn, I say to myself with shame, I wish I had watched more tense TV dramas with him.  I understand it now.

Time passes whatever we do or don't do.  And I try to fill this time with healthy healing in an ordered and upbeat way, so that when this period of mourning is over, I get back into my former life to carry on older and wiser.  This is not how it happens though.  This time, this long slow time creeps into my days and nights and says to me, I am still here.  I am sitting with you always, and when you cannot fill me up, it all comes back to us, to you and me and silence.  Time is ticking away from the moment of Alan's death, time is what I have given myself to recover, and time is the thing I am trying to fill.


Little memory spot going upstairs.  Alan loved flowers.

Sitting in silence here, sitting in the time I can't fill, I think about all the things that Alan and I did, and didn't do.  I think about who I was when we met, and who I became.  I think about him, and how much I still don't know about him, I remember how marvelous he was. How much he taught me, how patient he was, how wise and insightful he could be.  I think about the unkind things he did too, and how I was so naive, about how I had to grow up and find inner strength.

Sitting in this silence when the police documentaries, the border control documentaries and the mince pies all have faded away, I think, there is someone I am avoiding.  To stop doing all this thinking, time filling, waiting and remembering means I come back to myself.  I am at the centre of all this and I am hoping not to get myself too involved.  And so, if I were to suddenly meet myself now, in this room on this sofa, what would I do?  I tried to imagined how I would feel if someone like me walked into the room and sat down next to me.  I was filled with sadness and compassion with this thought.  I was moved by how quiet and alone the figure that I had imagined looked.  In my mind, I thought, this is serious, and this person needs my attention.  In my mind, I thought, if this is me, I know what to do.

Taking imaginary Antonia's hands in mine, I say,

"I love you.  You poor thing, this is hard for you, sit down and tell me about yourself."

"At last, you really understand.  My chest is hurting, my eyes are sore and I cannot work this thing out. "

"Antonia, " I say, still holding my own hands, "let's spent time together.  We will consult ourselves and understand ourselves, after all, this whole time right now is about us.  Let us talk now, and after, I will cook us dinner.  Whatever we eat, it will involve butter and cheese."

Later, as I was preparing a candle lit meal for one, I decided that I was going to fall in love with myself.  I had invited myself to dinner, and this was a celebration of my love.

I am of course, one person.  To love myself is always the answer.  But I don't really know how.  Falling in love with myself seems a beautiful way to proceed.  It involves being aware of myself, listening to myself, taking care of myself as if I were precious and seeing myself as truly worthy.  It involves sitting in the silences and letting time just pass.  It involves taking time to know what is happening when all the distractions are done, and accepting it.


Watching the sun rise of a morning with candles and pot of tea.  

Of course, falling in love is the first stage.  When I am more used to myself and can see more of my flaws, when I annoy myself by forgetting to put the rubbish out, I will be in a more permanent relationship with myself.  I will have put in place the foundations, I hope, of a lasting effort to love and take care of myself.  But right now, taking myself in hand, asking myself if I am managing, is wonderful.  Here is a list of the things I have done with and for myself


  1. We have early nights.  I read a book on sleep recommended by Alan's son, and now I understand all about sleep.
  2. We have lovely evening meals.  We eat them in front of the telly which we turn off at the right time because now we have strict bedtimes.
  3. We bought ourselves the most expensive candle in the world from Neals Yard shops, and laughed in the face of caution.
  4. We get up early every morning and watch the dawn rise with candles. We wrap up on the sofa with a pot of tea, and think in the silence and feel calm.  We also light the most expensive candle from Neals Yard and tell ourselves that when it runs out, we will simply buy another.  That feels like freedom.
  5. We have discovered, thanks to my daughter and son in law, walking on the Sussex Downs.  We go there and laugh in the wind, and avoid the cows.   

On the Downs, cows probably avoiding me




   Chapter Three


Mum and me 
Over the last year and a half I have loved and lost my mother, my youngest brother and my husband. Each death leaves us changed and each dying leaves a legacy.  My mother's death left a legacy of love, my brother's death left a legacy of wisdom, and my husband's death left a legacy of magnificence.  I am in a place of recovery now, to think on the love, wisdom and magnificence of these three people.  They have not left me, and I understand that now.  Nine years ago, when my then partner Steve was dying, he used to say that he would never leave me.  This changed as his health deteriorated, to always being with me.  I was infuriated by this, what kind of talk was that?  I didn't want some airy fairy presence with me, I wanted a strong solid alive  person with arms and legs.  I couldn't bear that always be with me stuff. But I understand it now.  They are always with me, and it is comforting.
Dom and me

Now that they are all dead, and physically disappeared, it is a comfort to feel that somewhere in the back of my mind, somewhere in the silences, somewhere in the middle of a day or night, I get a feeling that they are in the room with me.  But here in this world, where I am still living, it seems it is not just a question of being quiet and taking time out.  Life does not stop because I have hidden from it.  The time that passes through this little place in which I hide, the silences settling here as I take time out, are powerful and revealing if I take myself by the hand, state my intention to learn to love myself better, and let time take over.  There is, in the end, after all, only love.
Alan and me
                        
                                                                


Thursday, 17 November 2016

All is well, all is not well, all is well

On the 23 October, three and a half weeks ago, my darling husband died.  He fought hard at the end, before finally drifting into a deep peace. He died with his brother, his son and me holding him.  As his brother spoke the words commending Alan's soul into the hands of God, Alan died gently and silently.


Mr B.  Wonderful, stubborn and loved.


All is well

One morning, Alan's pain and discomfort was too great for him to convince himself it could be managed at home.  He spoke on the phone to his hospice nurse, who sent the hospice doctor to our house.  The hospice doctor asked to use the phone and after a while, managed to arrange a bed at the hospice where Alan had long been a trustee and had been instrumental in its set up many years ago.  Alan had very much wanted to go to that hospice, if he had to go to one at all, and he was relieved.  Later that afternoon as Alan walked slowly to the car, he told me that he feared he would not see his home again.  I told him that he was going for respite, of course he will be back.  He was dead within the week.

Sleeping peacefully at home while I sit on the sofa, reading or watching telly.

Before we packed his bags for the hospice, the post arrived and in amongst the envelopes was a small Amazon delivery.  My engagement ring had arrived.  I made him sit up, open the parcel, and put it on my finger.  We laughed, it was absurd.  We had married in a hurry on the 22 August when he was so ill in hospital, and when eventually he was allowed home, he set about selecting the engagement ring.  Back to front, he said, it was all back to front.  But I needed a ring, he said, and so we looked on Amazon, selected one, and sent off for it.  The last day that he spent in this house was the day that it arrived, and I take great comfort that I didn't open the parcel on my own later and put it on my own hand.  Thank goodness, I say to myself, he put my engagement ring on before he left for ever.

The care at the hospice was more than we in our daily lives can imagine.  Perhaps this is what true goodness is.  To take seriously someone's suffering, to keep watch for all those who are with the person who is ill, and to show foresight, compassion, tenderness and strength to all.  The nurses, the consultants and the doctors, the volunteers, the housekeeping staff, hold the hospice together as a place where dying is given honour and space.  Alan's condition deteriorated after his admission, his medication having to be constantly reviewed to give him peace, relief and comfort.  When the pain broke through which it did often, it was quickly and efficiently dealt with.  It gave Alan huge reassurance and relief, and it enabled us, his family and friends to be just that, family and friends, and to spend quality time with him.  We could focus on loving him, and being there for each other, knowing that Alan's pain was under control.

A few hours before he died, as he lay unconscious, his breath rattling and his face pale, two nurses raised his bed, and quietly stripped his crumpled sheets and pyjamas, washed him gently, shaved him beautifully and brushed his hair.  They remade his bed with crisp, fresh sheets, put clean pyjamas on him and placed the most beautiful brightly multi coloured knitted blanket over his sheet.  I watched them from the spare bed in the corner, where I and Alan's son, would stay.  Here is great care, I thought.  Here is care from the heart, care that cannot be thanked, here are two ladies who do this day and night for people, gently, kindly, taking the initiative because it is the right thing to do.  And that blanket -  Alan would love that blanket.  He would smile because he would know I  would love that blanket!

And so, later that night, at 10.15, we three sat together holding him as he quietly, with very little warning, ceased to breathe just as Alan's brother was praying for the commendation of his soul.  His son and I were watching him, holding his hands, and all of us loving him in our hearts.  When it was over, when the nurses told us to take our time with him before we washed and laid him out, I saw that there were no flowers in the room.  I took the two little model aeroplanes he'd brought in with him and put them on his pillow instead.  There, I thought, they will fly you away up into the sky now to your next life.


All is not well


Alan's son and his brother left the hospice some hours later and I did not.  I was not able to leave Alan and felt that if I did go, he would know and feel afraid.  I stayed, talking to him and crying a little, packing my bags, sitting down and holding his hand, and then continuing to pack my bags until well into the early hours. I had changed into my own pyjamas earlier in the evening, and could almost imagine that we were both just getting ready for bed, not that he had just died and I was packing up my things to leave him for ever. He looked fine, he looked well, just very, very still.  He was no longer breathing those little breaths, there was no tension in his face, and he looked beautiful.  Clean shaven, hair brushed, just as he would have wanted to look with his favourite maroon coloured polo shirt, and that bright, happy, colourful blanket.  And his two little aeroplanes, those two little planes he loved that reminded him of flying with his father when he was a boy, on each side of his pillow.  Very masculine, I said to him, very manly.  I wondered if he was still hovering somewhere in the ether and could hear me, but I didn't feel anything.  Just my own sadness and a reluctance to go home.

Holding Alan's hand, one of the aeroplanes, the colourful blanket and, my engagement ring.

Let us know when you go, a nurse had said, come and find us.  Don't leave without telling us.

It was raining heavily outside.  Pulling my suitcase behind me on its little wheels along the silent dimly lit hospice corridors, I found the nurses and told them that I was leaving.  It was 3am.  In my dressing gown, pyjamas and slippers, pulling my suitcase, I walked into the storm outside followed by a kind and experienced nurse, making sure I reached the right car and was fit to drive. It felt very Shakespearean with the wind and rain manifesting outside what I was feeling inside.  Wet through, my cold, soggy dressing gown clinging to me and my slippers slippery on the pedals with the rain, I said goodbye to the nurse, himself wet through now, and left the hospice without knowing how I would ever sleep again.

I went to my daughter and son in law's house, and lay down for my first night of widowhood, wet through, and cried.


All is well.


In the days spent sitting in silence with Alan before he died, I told him that he had been my greatest teacher.  I spoke to him of the gifts he had given me, of how he had shown me how to live, how to be myself and how to speak my truth.  I told him he was magnificent, and that I would miss him.  Of course I told him I loved him, that is a given, but I wanted to tell him more, of the deeper and more powerful things that one person can give another.  I told him I knew of his greatness, of his strength, of his wonder.  Some of the times I couldn't speak, and I couldn't find the words, and so I stayed silent and hoped that he would know, somehow, in his silent unconscious world, he would understand with the greater powers that the dying may have, that I could not find the words to articulate his wonder to me.

And now, after the funeral, after the celebration of his life that we held last week, I sit in his chair here in his home and I try to work out where this heavy sadness is located in my body.  Ah, it is coming from my chest.  My heart is heavy, and the heart holds love and loss.  Today, I collected his ashes.  I walked a mile to the next village through the autumn winds, through the swirling leaves as they flew about me, and collected a black carrier bag containing what is left of Alan.  He went out in style, in his full American Football kit, and I wondered if the ashes of his special football trousers were mixed in with them.  Walking home, I have put the ashes next to the television.  He loved his television, and next to them is his American football and on top of them, is a framed, signed photograph of his hero, John Wayne.


Alan went out in full American Football gear, in great and fitting style

In the days before Alan died, there was a night in the hospice where I was overcome with grief.  Leaving Alan sleeping, I went into the Sanctuary, a room set aside for prayer, meditation, thinking and peace. Sitting on a chair, I gave in to the tears I wouldn't cry in the room with Alan, and cried.  I tried to pray, and couldn't.  I tried to think of my brother Dominic who had recently died, and couldn't.  I tried to stop crying, and couldn't.  Into this bleakness came thoughts of my mother, also recently dead, and in my distress, I felt her put her arms around me,  It was not quite that she put her arms around me, more that I felt her pass through me, I felt her presence and knew that she was with me.  I felt that in my mind I saw her like the wind, a gentle wind blowing through me and bringing comfort that filled me with calm.  My crying stopped, the storm passed, and deep peace entered the room.  I am not alone, my mother is with me and now, I am calm. I went back to Alan knowing all was well, all was how it should be, and that I could do this.


I found this prayer from Alan left in the Sanctuary and took it.  I felt God would read it whether it was in my purse or in a pile of prayers in a hospice.  It says Please pray for Antonia Rolls, my new wife, who is providing me with such wonderful care. Alan.


There is a legacy when someone dies.  The legacy is in the relationships of those left behind, to each other and in memory of the departed.  The legacy of my remarkable Alan is visible in the love shown by his family, his friends and his colleagues to him and to all those around them.  In the sadness of his death, the most overwhelming emotion shown by all around him, is love.  The sadness is there, oh it is there.  But the kindness of all those around him, in his world and in his family, is a great testimony to a great man.

Alan was someone who focused on the path in front of him.  He bent down to look at all the details beneath his feet, noticing each blade of grass, each pebble and how the path was constructed and where it was going.

I am someone who lives high above the ground, I am comfortable in the space amongst the stars and the clouds, loving the space and the magnificence of the sky.

Alan's gift to me was to take me by the hand and pull me back down to the ground.  Look, he would say, look at all this detail.  See how all this is significant, focus on all the things here on this path, this is deeply important.  And my gift to Alan was to take him by the hand and lift him up into the sky and say Look at the space up here!  It is safe, and magnificent, and there is magic and wonder up here.  This is also deeply important.

Thank you dear, dear Mr Bedford, from Mrs Bedford, with love.


All is well.  Summer last year, all is well.

Wednesday, 12 October 2016

On the mystery of taking care of oneself

Look after yourself.

Alan, my husband, is ill.  He has terminal bowel cancer.  He takes his pills, is prescribed morphine for his pain, and we take a great deal of care to make him happy, to make him comfortable and to do what we can for the best.  He is a strong character.  He knows what he wants, and is extremely perceptive and intelligent.  This all helps, and I am so grateful that he makes his decisions and articulates his needs so well.

My job is to do what I can, and to be here with love.  I can do that, and it isn't difficult.  What is difficult is to remember to look after myself.

Be kind to yourself!

say the nurses, the neighbours, my family and friends to me, and I say of course!  I will! Thank you!  But I have very little idea of what that means.  What does it mean?  Be kind to myself.  Look after myself. Ok, I'll have an Indian takeaway and order some shoes from Amazon. I will give myself cakes, some more tea, I will have more bubbles in my bath. And yet, I don't really want more bubbles.  I will have the cake, and the takeaway, because like a hamster I will always eat and if I could store it all in my cheeks too I would, but I don't really feel any better.  The shoes arrive but they don't make Mr B, my husband, any better, and all the time, I feel a little bit sad and a little bit low.


Wearing my new shoes to visit Mr B in hospital today, getting my priorities right
There are two of us in this dance, this dance towards the end of this life for Mr B.  His cancer is defining his journey, and he is dealing with it day by day, moment by moment, all the time, and I am with him all the way.  But I don't have cancer, and I am also an observer, I am in another space to him and I can only go so far.  We hold hands, we talk, we know the score and we talk about our preparations for the future (both mine and his), but I can only watch as his illness takes its toll.  There are two of us in this dance, and though we are holding each other, we have different steps.

I am well.  Thank you, I am well.  I think I am looking after myself, I think I am being kind to myself, whatever that means.  I wonder, does it mean that with proper self care, that I will be wiser, have more energy, be less sad, make better decisions?  It may well do, it may well mean that I cope better with watching my Mr B being unwell.

But I am already coping well with Mr B's cancer.  I am already wise and energetic, and I do know the score.  My decisions are made only with Mr B, and as for the sadness, well - that just is.  For both of us.  Perhaps when I am encouraged to look after myself and be kind to myself, it means not only that people mean well but that they feel powerless too, that it is a statement of understanding that there is very little else anyone can say to me.  And here is the funny thing, it makes me feel powerless too.  It makes me feel as if I haven't been doing it right, and sends me into a little spiral of doubt.  This little spiral of doubt is probably because I think that I am absolutely fine, on the surface, and have been ignoring the little suggestions my body is giving me that I am not absolutely fine.  (How could I be?  Precisely. Wake up.)

It has been on the one hand, a very busy time.  Mr B has a routine that works for us and there is always much to do.  Household things, practical things, caring things.  I have my family and a tiny bit of my outside life I still deal with, taking time away from the house when it's possible.  On the other hand, there is so much time.  Sitting with Mr B when he is resting and sleeping is good for both of us, and when the jobs are done, we love to spend an evening together watching television and chatting.  Nothing gets done, and time goes by, it is a different kind of busy completely.  I am amazed at how calm I am as the days go by, and I am pleased by the lovely little things that Mr B and I order online for the household and for the sheer hell of it.  But recently, he went back into hospital for a few nights in great pain, and I came home on my own.  It was after a second night of hardly any sleep that I began to realise that this is a symptom of not knowing how to really look after myself.  It wasn't just these two nights that I have not slept, it is every night that I don't sleep.  I just noticed it when Mr B wasn't in his bed in the sitting room.

I am tired when I go to bed but I don't want to sleep.  My body resists it, my mind resists it, and I have been pretending to myself that this is not the case.  And what is more, I want to eat all the time. I want to eat things I don't normally eat, like huge white bread sandwiches in the middle of the night, and chocolates.  I am not hungry but I want food.  I want comfort, I want to feel content, I want to save myself from feeling the sadness.  And I can't sleep because I don't want to let go.

I haven't spoken to anyone about this business of looking after myself, of being kind to myself.  I thought I was looking after myself - in many good ways I am.  I have a lovely memory foam mattress for my bed, I have baths in the afternoon when the sun is shining into the bathroom and the house is full of flowers.  Mr B certainly seems as shiny and comfortable as he can be, and it is a well known fact that if he wasn't shiny and comfortable, he would let me know.  But the deep, silent, inside places, the vulnerable places where I don't want to go, where I fear the difficult feelings, are not being addressed.  And so, I am not sleeping well, I am wanting to eat sandwiches in the night, and all my body is aching.  Being kind to myself, looking after myself, means paying particular and dedicated attention to these parts of me, and looking them directly in the eye, so to speak.


Here is what I will do.  Solutions.  Plans.

Acknowledge that I am not meant to be on top form all the time.  And when I am asked how I am, which I am a lot, by caring, compassionate, kind family and friends, blinking well tell them if I am tired, or craving deep fried mars bars with custard.

Tell myself it's safe, it's fine, to feel lost and low, tell myself that anyone who is walking the cancer journey with a loved one, will feel very sad at times.

Take up yoga.

Buy more shoes.

Wearing my awesome wife t shirt and drinking from my Mrs mug, spoilt rotten by Mr B.

Conclusion

Having written this, it seems that looking after myself, being kind to myself, is not so much a physical act, but more of an exercise in self awareness and courage.  My husband is suffering from a cancer that will not get better.  He is often in pain and coping with a disease that will end his life. Of course I won't be sailing through this as if all it takes is a bit of planning and some late night snacks.  Of course there will be consequences for me and for all his family and friends, and I bet I am not the only one craving white bread and butter sandwiches in the early hours because I can't sleep.

It seems that this looking after myself, being kind to myself is an ongoing thing.  It must be this way for all of us. and perhaps, in the long run, we all get by somehow.  I will keep you updated.


Mr B tonight with supper, newspaper and on the telly, football.  Perfect.


Wednesday, 31 August 2016

Mr B, still in hospital, still smiling.

Life.  An update.

Alan, still in hospital, still smiling.
The inner life

Making space to journey with someone who is terminally ill is best done consciously.  Changes are needed in all areas of the life of the person who is ill. The ripple effect includes family, friends, acquaintances, passers by and all those professionals who take part in this final journey.  Those of us caught in the ripple effect, especially those of us closest to the person who is dying, are required to stop and take notice, slow down, and as far as is possible, become present.

Becoming present, slowing down, being patient.

I have been learning much about patience recently. It has been necessary, and I have been made aware of how much patience is needed in life, if we are to understand and connect with what is happening around us.  I have made a decision to enter a state of patience many times over the last year, and have become aware of what this means. It means that I surrender my time and accept that for as long as is needed, within reason, I have stopped wishing to do anything else but sit where I am. I am learning to step away from time passing as a thing to be watched, and to let go of wanting to do, to learn how to simply be.  A Qi Gong teacher once told me about smiling from the heart, and so I do what I think is smiling from the heart.  This makes the stepping away from time as doing, into a more profound experience of time as being. The idea is that I am much nicer while being, which will come as a huge relief to those around me.


Holding hands in silence with Mr B

On a practical level, when I am sitting with someone who is ill, it is my decision to sit with them, I am under no obligation.  There is often nothing that can be said, and so entering into a state of gentle patience, is a discipline that I am delighted to practice. I remember once, a while ago, sitting through the early hours of the morning in a hospice, and noticing as I took my seat that it was 4am.  These early hours are long and silent and dark, and I remember making the decision to be patient.  There was nothing else I could do, and if I was to sit as I intended, then that was all that I could do.  The morning would come at some point, things would change with the day. Eventually, when I looked at the clock as the morning was dawning, I saw that it was 8am and that four hours had gone by.  Four hours and nothing had changed, except that the day had come, and I had learned a valuable lesson.  I had learned that patience is a discipline, a state of mind, and when it is needed, it is very powerful indeed.  The time spent by that bedside was neither easy nor hard.  It was neither long nor short.  It was a time of silent giving and receiving, a time of respect and love, a time of offering the only thing I could offer in those circumstances, my time and my willingness to stay.  In order to do those things, I had to practice patience.

When I left the bedside at 10am, I was very tired indeed, and needed to take time to come back to myself, to sleep, to have a pot of tea, and to be and do all the things that made me who and what I am.

The same idea of patience was needed in the hospital with my son in law and my daughter, when she was experiencing a long and painful labour with their son.  The hours, the days, so much time passed, and I made the decision to practice loving patience then too.  And in fact, the long hours waiting for a baby to be born were not dissimilar to those long hours by the bedside of someone who is waiting to die.

Practising patience, loving patience and kindness, giving time willingly, and learning to strive for authenticity, are lessons that benefit us in all areas of our lives.  Though I accept that giving time willingly in a traffic jam and practising loving patience and kindness when someone queue jumps, or when our children drive us to distraction is quite something else.  I haven't totally got there yet.  I can still say rude things to people who annoy me. This patience, this discipline of patience, is a state that I am still learning to inhabit, when it is important that I focus and give the gift of my time and attention.  I am, it is, a work in progress.


The outer life

So this is where I am now.  I live in Mr Bedford's little house on the High Street for the while, and I am married.  I am married of course to Mr Bedford, and as such I am now Mrs Bedford.

Mr Bedford is still in hospital.  He is due out in a few days time, and I am here getting the house ready for his return.  When he returns, he will be driven down the little back lane, come in through the back garden full of flowers and colour, he will be helped up some little wooden steps to the decking outside the sitting room, and into his new bedroom in the sitting room overlooking this wonderful garden, and beyond that to the village green, and beyond that, in the distance, to the tennis club where for so many years, he has been and still is, famous as a player, an ex chairman and quite simply for being Alan Bedford. .

Mr Bedford, Alan, my husband, was diagnosed with terminal cancer in April this year, on the very day that my youngest brother, Dominic, died of the same cancer.  For a while, Alan underwent all that was prescribed for him, taking his diagnosis, his chemotherapy, and his failing health in his stride. But there was always pain, great pain, great discomfort, and Alan found that when he was feeling bad, he was feeling very very bad indeed.  And when, somehow, the medication worked, he could get by quite well.

Three weeks ago, Alan and I visited a dear friend. We sat in the sunshine in her beautiful, extensive gardens, eating cake and drinking tea, talking of his illness, and talking of life in general.  We were not married then, and there seemed to be time ahead of us.  Plenty of time, and in that garden in the sunshine we talked of many things while feeling that whatever was ahead of us truly was ahead of us.  It wasn't with us yet.

That night Alan began to experience dreadful pain, such dreadful pain that the next day he could not make it to his GP a few hundred yards from his home, and had to be taken from the street by a kind passer by in a car to the surgery from where he was taken by ambulance to A&E.

Three weeks later, things have changed for us.  Alan is still in hospital, having undergone abdominal surgery that discovered that there is no more treatment for him.  His cancer is denser, there is no more need for chemotherapy, and his life expectancy is drastically reduced.  In this difficult time, on a Thursday afternoon, 18 August, on the ward as he drifted in and out of consciousness, we decided to get married.  Alan felt he may not recover enough to wait for a wedding in the time it normally takes to arrange, and so on Monday 22 August at 9.30 am I collected the special licence from the registry office and at 11.30, in a room made wonderful by Alan's family with flowers, bunting, a full cream tea and balloons, we were married.  My family was there, Alan's family were there, and it was at once a joyful and tearful occasion. Mr B was so ill I had to wake him up to respond to our vows of marriage. I am not, I said with extreme loving kindness and patience, marrying a man who can't look at me.


Sorted.

With our marriage, I have moved into Alan's house and have prepared it for the delivery of his hospital bed and other equipment later today, with a view to Alan coming home at some point soon.  We will begin our married life here, and end it here.  Both of us look forward to our time in this house together.  We know the score, and with help from the palliative care team, the hospice team, the carers and the district nurses, with help from Alan's family and friends, my family and friends, there is much to look forward to.  I spend time each day in the hospital and come home to a quiet little house. Soon Alan will be here, and when he is here, things will change again.  We will enter our next phase of this extraordinary thing called life, and we will see where it leads us next.


My husband and I just after the wedding with grandson George who has no time (or patience) with hospitals or weddings or anything like that, he just wants to bash things.

But George did get to bash Alan's chair earlier on 


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