THE WAITING ROOM to be used by THE ALZHEIMERS SOCIETY

Jane and I are excited to announce that we  have been commissioned to make a number of short films to be used by the ALZHEIMERS SOCIETY for a brand new training programme to be rolled out later this year. The videos will be made entirely from the footage we have shot over the past 5 years with Jane’s Dad (Josh’s grandpa).   Gerry lived with very severe dementia for the last years of his life, but these years were spent entirely as a patient on a hospital psychiatric ward, where his care was less than ideal – far less than ideal. We now have close on 100 hours of video material documenting what this meant for Gerry, for Jane and the rest of the Harris family.

We have always referred to the project as THE WAITING ROOM and its been sitting on the shelf in my cutting room just waiting for an audience  such that The Alzheimers Society can now provide. You can see glimpses of Gerry’s life in hospital by clicking on the image above. It is not easy viewing but just a year after Gerry died, we are so proud that his story can now be used to promote a better understanding of dementia, and the need for a more compassionate approach to the care of people living with the disease.

Below we are reproducing Jane’s letter to Josh which may explain a little more her feelings about how this came about:

 Dear Josh

Three years  now and I’m learning to live without you much better.   There are those heart lurching moments when something is triggered in me and I feel the sudden pain in my heart as if it was yesterday – the sight of a tall young man with his mates, a music track, a word that you might have used spoken by someone else (‘mundane’ you said of something you were excited by) , seeing your friends now at 25 , that carefree look I see in young men in the street.

You changed our lives Josh.  Its strange and circular.  Jimmy and I met at film school all those years ago and then I made a decision to leave that avenue of work to train as a therapist so that we could be around more for you in the early years.   And now after your death we find ourselves working  together again making films with you centre stage. This website Beyond Goodbye was born out of your death. Its our way of staying connected to you and trying to make sense out of something senseless. But it has become much more than that.  As well as somewhere we can gather our thoughts and memories about you, it is now a place where we can share with others our feelings of what it is like to be a bereaved parent.  It’s not that we are keeping you alive in what some may see as an unhealthy way – more that we are doing something constructive and creative with what IS……we now know the best kept secret that every bereaved parent discovers – the loss of a child is not one that has a time frame (oh how  obvious on hindsight!)

So with everything we now do, you are always there, including the film and video productions we are now engaged in.   You were there when,  under the banner of Beyond Goodbye Productions, we made SAY THEIR NAME for The Compassionate Friends. We believe SAY THEIR NAME is the only film made in this country exclusively by and for bereaved parents.  And in a sad but still wonderful way, we have to thank you for that opportunity for as one of the contributors to that film says – through our work with TCF –  “we have made some of the best friends we wished we’d never met”.

And when  Grampa Gerry died in January last year, you were there ‘with us’ at his funeral. We showed the film of you and Joe as you skydived for your 21^st birthday to raise money for Alzeimers.   At that time, Grampa had only just developed the disease, the dementia had not yet taken hold.  But as his and Granny Pat’s lives became more and more affected by the condition, we continued to work with them, filming on nearly every visit to the hospital, collecting material that we hoped one day might help to make a difference to way that dementia sufferers are cared for. There have been a lot of false starts with all the major UK broadcasters turning our project away.  But then we screened an 8 minute version of the film to a dementia conference last December, which someone from The Alzheimers Society saw and that led to the current commission. 

People often ask me what it means to see my Dad seemingly suffering so on the big screen.  I tell them I’ve always being looking for something positive from his experience as I have with losing you, dear Josh.   But its also true that I do have mixed emotions – Gerry’s death was in what people call the “right order of things”.   Unlike you, Gerry waited a long time to die and when death eventually came it was as much a release from the terror of dementia as it was a sorrow of his passing.   We want to tell his story, if only because for those who do get to grow old we want them to have the best possible care and understanding – that their last years do not become lost years. 

So thank you Josh. It is largely  because of you that Jimmy and I have been able to find our way back to the kind of work we love to do.  And what’s good about it is that you are with us every step of the way.

with love

Mum

Jane also presented the 8 minute version of the THE WAITING ROOM at another conference, last month.  “Making Sense of Dementia” at the Freud Museum was designed to find out what psychoanalysis can offer to the understanding and treatment of dementia.

Thanks for reading and watch out for further news of THE WAITING ROOM.

JIMMY 

February 2014

This week we have received (should we say) Josh has received his 100th postcard. A remarkable milestone, tremendously sad, tremendously poignant but hugely satisfying to all who knew him. Postcards to Josh was set up by Josh’s friend Victoria Trow very soon after the accident, as a way of staying in touch with him and his dream to travel the world. And now three years on and the 100th postcard delivered to our door, we have this amazing sense of Josh’s spirit being carried around the globe; of Josh being talked to and spoken about, being photographed and written about, being hauled up mountains and flying down ski slopes, being shoved into backpacks, escaping from beer bottles, (maybe even rolled into one of them funny cigarettes on a lonely beach somewhere) but always enriching all our journeys wherever we go.

And as we have discovered POSTCARDS TO JOSH has become probably the clearest manifestation of the way we have tried to continue our relationship with Josh. We have not (as maybe much of society had expected us to do) let him go – we have not ‘moved on’ from his death and forgotten him. As we have written elsewhere this is not an unhealthy approach to grief or to our attempts to rebuild our lives after the death of one who was so loved and such a big part of our lives. It is we believe profoundly healthy and profoundly life affirming – Josh still has much to teach us about life and death.

Postcard 100 is (fittingly perhaps) from Josh’s brother Joe who loves to ski

You can see more Postcards by visiting the site here POSTCARDS TO JOSH

16th January 2014

3 years ago today an ordinary beautiful man
boy had his life taken away on a road in Vietnam
3 years ago today our family was broken apart
3 years ago today his brother became an only brother
his sister became an only sister
how is it then that Joshua is still with us
he is still here walking up the garden path to our front door
still here to sit and have a coffee and a piece of toast
still here to help me write these words
still here to hold my heart and insist that I
keep breathing ….

10.30 am

Today is 16th January.  Joshua’s deathday.  His birthday is 23rd May and his deathday is 16th January.  I do not object to the word ‘deathday’, it is an accurate description for such an anniversary.    It’s just a date after all but like his birthday it functions as a marker, a moment in time and something to hang on to in this strange world we now find ourselves in.

I am visiting Emily, my mother and Josh’s grandmother.   I’m explaining why I’ve brought a candle and some photos of our boy.   I’m never quite sure about this bit.   My mum has alzheimers dementia and almost no long or short term memory.   It is hard enough for her to remember the names of all her grandchildren let alone the fact that one of them is dead.   She is asking what happened to him. He died while he was traveling in south east Asia.   How did he die.  It was a road accident.  How old was he.  Twenty two.  Oh yes he’s up on the hill.  There’s a tree there and you can see down the valley. My mother is captivated by these large prints of someone she doesn’t really know.  Or someone she once knew but now doesn’t. Who is this then? It’s our Joshua. Where is he?  He’s dead Mum.  Why, what happened to him?

I light the candle.  That’s not very big is it?  What kind of candle is that?  It’s true, it’s a small tee light in a glass saucer and the wick is too short to hold a decent flame.  I feel a bit awkward trying to remember Josh with so little means at my disposal. I go back to the beginning.  It’s for Josh, Mum, he died three years ago and I’ve brought some things to help us remember him.  Why?  Have you forgotten what he looks like?   She studies the photo we used for his funeral with the graphic “Celebrating Josh”.   What’s there to celebrate – he’s dead isn’t he?   You don’t celebrate when someone dies.  Well we did, Mum. How do I explain this?   She was there three years ago at his funeral, at what we then called a celebration of his life, a two day event created out of the deepest sadness but with the hope of finding some residue of joy.   (we have two films on this site that record Josh’s funeral)

It wasn’t like that in her day. There are photographs of her parents, my grandmother and grandfather on her sideboard. I do not remember their funerals (I was 10 and then 16) merely the announcement that they had died, a notice in the local paper. My own parents did not show that much emotion at the time.  It seemed like a day like any other.  We didn’t stop work and we didn’t stop going to school. I was not invited to their funerals.  They disappeared almost immediately from our family life swallowed up by the normality of ordinary generational death.

And here I am now, on Joshua deathday, struggling to find a connection between my mother and her grandson, and struggling with her illness and the distance it is imposing between us.   I never been so acutely aware of a life running out. I’m tired, she says, time to put me in the oven. I know Mum.  Would that I could do something to help you. (What do I mean by that?) Would that I could bring Joshua back. (A cruel irony – to actually have it in my gift to end my mothers life but not to restore my son’s).   Would that we had had more time to say goodbye to him, to drag his death out.   (Is that what we are doing now … dragging his death out? … going through these photos over and over again).   There is of course no comparison but still I find myself in an emotional push me pull you situation – more time for Josh less time for Mum.   In this moment what will be fights with what was.  I wonder if it was wrong of me to bring them round, these photos, to ask her to recall yet again this tragedy.   But right now I need what I am looking for – some kind of consolation in the bringing together of two of the most important people in my life, of two beautiful souls with only the thinnest of veils between them.    On this day much like any other, I want to mourn and celebrate Joshua as well as anticipate the inevitable departure of this wonderful woman who gave me life.

Soon after Joshua died, a friend of ours, a psychotherapist told me ‘sooner or later you are going to have to forget Josh’.  He was referring to the Freudian idea that the mourning process is primarily one of a gradual loosening of attachment to a lost loved one, so that one can continue to live a healthy and mentally stable life.   To do otherwise, the theory goes, is to sink into melancolia and madness.    There is a certain attraction to this sense of forgetting all too evident as part of my mother’s condition.    The problem is that Josh’s death won’t go away.  There’s no getting rid of that memory, the biggest turning point in our family’s history, fast becoming myth but no less potent for that. For that’s what it now is – a story told over and over so that instead of fading it becomes more and more embedded in our lives.  Josh of course is not always in the forefront of my mind – the day’s work will distract me for relatively long periods.  But then back he comes with full heart stopping force.  Josh alive and Josh dead (he can’t be dead if he wasn’t alive) its a whole package of memories fighting with each other and creating a chaos of feelings not least the recognition that I have forgotten him for a while.  In this I envy my mother’s dementia.  How old was he when he died – so sad – it was a woman wasn’t it, she stepped out into the middle of the road and he swerved to avoid her.  The narrative is not  that accurate but it is now well worn and provides its own sense of security both for her and for me.   Its construction belies another kind of forgetting born out of hopeless repetition and familiar distraction.

2.00 pm

Jane and I have just downed a scotch each at the pub where Josh used to work and are walking along the track that leads to his tree.   Its a pilgrimage we have made many times now – three years of tending to our boy’s grave, three years of arranging flowers and of pinning up flags, three years of doing what we should never have to do.   The land rises in front of us and as we walk the view across the valley broadens revealing our village in the distance … as well as a build up of dense cloud. We make it to the nearby barn just in time as a wall of rain sweeps across the fields.    Our plans to spend some time at the tree are for the time delayed by another onslaught of January weather.

The barn is modern and  large and almost empty – to one side a stack of straw bales providing its only sense of purpose. It’s dark  with a kind of inverted light blowing through the slats at each end, casting non-shadows on a featureless concrete floor.  It’s a place without much history, and to try and conjure a Joshua moment here feels both cruel and disappointing.   But the downpour is heavy and persistant and we have no choice but to spend time here.

Did Josh ever come here – shelter like us from the rain.  We planted his tree in the next field, less than a hundred yards away, at a spot where he would gather with friends on days with better weather than this.  As a curious teenager, would he come with them to this barn to play hide and seek with their new and emerging selves: to take away with them fond childhood memories, some precious secrets. Can we now invent his presence, discover something here that can remind us of him. Just a small something to prove we have not forgotten him, to tell Freud he was wrong.  That we can live with our memories and stay sane.  But where is he on this day, three years after his death day.  We’ve heard other bereaved parents worry about losing their child a second time into the fog of time, forgetting the way they laughed, the way they walked and played; the way they smelt, the touch of their skin.  It is easy to do if only because to remember is such a painful joy: and there was always more to their lives than we can ever know.  Yes, its the joy of his life that we need now but how,in this barren barn space, vacant, like a mind gone blank, how do we conjure memories of Josh.  How do we bring him back.

There is a platform in the stack of bales at about head height – the size maybe of a double bed and we can climb to it and look out over the void.   Jane lights a candle and we imagine how it would be should the flame catch the straw – how long would it take for the whole lot to go up – a massive plume of white smoke – the sound of fire engines – shouts.    There was an episode when Josh was just 15 – he and his friends had disappeared one night telling each set of parents a different story.   It was Josh who eventually answered his mobile phone to reveal where they had got to.   We found them preparing for a small rave in barn similar to this one, they had their beers and their cannabis, their sound system and some matches.  For safety’s sake we brought them home – we pooped their party and Josh got the blame.

The rain has eased but it hasn’t stopped and brief look at the sky tells us it’s not going to anytime soon.   We’ve been in the barn for over an hour so if we’re going to make it to Josh’s tree we better go now or not at all.   Whichever way we’ll be getting a soaking.   The ground is heavy under foot as we make our way along the side of the newly ploughed field, through the break in the hedge, and over the fence to where his tree stands with its fort like stock fence.    Josh’s tree is like sentinel, always there, always looking out over the valley, always waiting for us to visit.

On our return from  SE Asia, we had brought a number of  Vietnamese flags as a momento of the country where Josh died.   Two of these we tied to the corner posts – flashes of red to be seen clearly from the other side of the valley.   But our winters weather has done its damage and Jane finds them slightly the worse for wear and blown into the bushes.    She retrieves them – they hang lifeless and the rain drips down our arms as we stretch to fix them back in place.    With this task done, we stand in the rain and wonder what do we do next. Someone has been here before us and left a bunch of flowers. Later after dark and when the sky has cleared more friends will come with a lantern to hang by the tree and we will see it from across the valley, a small flame with much to say.

Jane and I touch hands in silence.   Three years ago and sometimes it seems like yesterday, sometimes it feels like its been forever, or no time at all.  Most times it feels we live our lives in some kind of a limbo.    Could it be that as bereaved parents we’ve been given special insight to what is meant by eternity – to that ‘no time at all’.

Thanks for reading

and thanks to all who sent suuch kind messages and held us in your thoughts on Joshua’s deathday

Jimmy

January 2104