News

Josh’s Christmas walk 2013

Posted by jimma


JOSH tree

 MEET AT JOSH’S TREE

WESTLEY FARM

SATURDAY 21ST DECEMBER  2.00PM

Josh’s good friends (and ours now too) Hollie Gale and Nat Davis have again done a wonderful thing and organised this years Christmas walk for Josh to, as they say  on their FACEBOOK PAGE, ’embrace the festive spirit, coldness, Josh and each other”.

Well I for one am looking forward to a lot of embracing as it looks like this years wander to the pub is going to be bigger than ever.

The walk is on Saturday 21st December and starts at Joshs tree on Westley Farm at 2 o’clock.

Please go to the FACEBOOK PAGE  if you are coming.    And I believe there’s an opportunity to celebrate Granty’s birthday in the evening – Happy birthday Mr Grant.

 

Now for some more pics of years gone by

2012

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2011

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JOSH EDMONDS MEMORIAL SCHEME – Year Two gets off to a cracking start

Posted by jimma
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Lewis Murphy – last years successful candidate

 

Ministry of Sound placement

scheme launched 

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Josh’s mum Jane at the launch

 

 

Year Two of the Josh Edmonds Memorial Scheme is officially on the road and applications for a month’s internship at the Ministry of Sound are now open.    Anyone aged 18 – 25 working or studying in the county of Gloucestershire is invited to apply for the opportunity to work as an intern at one of the UK’s leading music brands.      The scheme is run jointly by Cirencester College and the ‘Ministry’ in memory of Josh who studied at the college and then went on to work at MoS, initially as an intern himself.     By the time he left he had become one of the clubs most prolific video producers, making over 200 clips for the brand.    The placement is designed to help a young person from Gloucestershire get a similar foothold in the music industry, and to explore the opportunities that Josh made for himself.

LEWIS LIGHTS UP THE SHOW

At the launch this week, Josh’s mum, Jane introduced Lewis Murphy, the first successful candidate who gave a lively account of his experiences at the Ministry of Sound last July.   Lewis paid tribute to the two Josh’s in his life.  The first Josh is his own friend from schooldays, and like our Josh a passionate fan of drum n bass.   Tragically Lewis’ friend Josh also died at an early age so its was with a ‘double edged’ sadness that Lewis embraced his opportunity to make the  most of his time at MoS.  13544499(400) But he has truly given it his all, he made a BIG impression at the club, and we thank him for bringing such a wonderful energy to his role as ‘first candidate’.   “The people I met and the experiences I had are irreplaceable” he told us  “I can now look back at those times and reflect on how much of a career springboard it was by looking at where I am at now.” Lewis, a University of Gloucestershire student until earlier this year, now works for leading drum and bass label, Emcee Recordings.    Lewis told us he will always remember the ‘two Josh’s’ and the strange coincidences that led him to “actually getting paid” for work he had until recently only dreamed of.

The audience at the launch also heard from Cirencester College Principal and Charlie Gray one of Josh’s best friends from school and London.  Charlie told how he often worked with Josh on TV shoots and was ‘amazed at his knowledge and input’ he had on set.  “In a short space of time he became a huge asset to MO and  a great example of someone who started at the bottom and worked their way up. The ‘Josh Edmonds Scheme’ is a great chance for someone to have an opportunity similar to the one that he made use of so well.’

13544491(600) Following in Josh’s footsteps – on the radio!

Earlier in the day Jane had popped into the radio studios at BBC Gloucestershire to help promote the scheme on the Chris Baxter show.  Following in Josh’s footsteps is what its all about, said Jane as she was joined by Lewis on the telephone.

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Click on the links below to listen again to the broadcast.   Some excellent stuff here, Jane acknowledges the ease which young people can talk about death and Lewis reveals those strange coincidences.

This is Part One

and Part Two

How to apply to the JOSH EDMONDS MEMORIAL SCHEME –

If you are between 18 and 25 years old, live or study in Gloucestershire,  you can download the application form here.     Along with personal contact details you will need to write a short statement about why you’d like to work at the Ministry of Sound and send us an online link to a piece of your own work.    This can be music or video production.  Completed forms must be returned by 28th February 2014 to anita.pring@cirencester.ac.uk.   Shortlisted candidates will be asked to come for interview in March and the successful applicant will start work at MoS in July.

GO FOR IT – YOU’D BE FOOL NOT TO!

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Lewis encourages some applicants to the scheme

 

While working at “The Ministry” Lewis wrote a daily blog which you can read here Lewis Murphy – Candidate One.

Finally if you want to know the sort of thing Josh made at MoS check this out

 

THE WAITING ROOM – first public screening

Posted by jimma

THE WAITING ROOM SHOWN AT DEMENTIA CONFERENCE

A short version of Jane’s film THE WAITING ROOM was the centre piece of the 8th Annual Conference on Dementia and End of Life organised by The National Council for Palliative Care and the Dying Matters Coalition and held in London on 4th December 2013.    The film is about the time Jane’s Dad spent on a psychiatric ward and was programmed to illustrate the lived experience of people living with dementia – it seems that people were truly shocked by what they saw and we have been humbled (and pleased) by the response to the film.

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We have been making The Waiting Room for over five years, long before Josh died.  Filming started when Jane’s Dad, (Josh’s Grandpa) Gerry went into hospital in 2008. Then aged 92, he had early stage vascular dementia and after her Mum Pat had a stroke and could therefore no longer look after him at home, efforts were made to find a suitable place for him in a local residential home but none were available. So Gerry was admitted to the Ailsa Psychiatric Hospital near Ayr, their home town in Scotland.

This was a far from ideal solution to the problems faced by the family, and with the thought that surely things would improve for both Gerry and Pat, we began to film with them both. As it turned out Jane spent more and more time trying to deal with a system (its called the NHS!) than actually being with her parents as they moved into the final chapters of their lives.   She now sees these as lost years rather than last years.   But  as the dementia progressed to its inevitable end stage,  Jane’s efforts to find a more ‘person friendly’ care package, a more stimulating environment,  a more comforting and less intimidating final ‘home’ for her dad,  were mostly in vain. For reasons we believe were the result as much as the lack of care as of the progress of the disease, Gerry’s well being went into steady decline and he never left the hospital.   He died earlier this year and you can see our farewell tribute to him here – FAREWELL GERRY.

FAREWELL GERRY was culled from the many hours of footage we have of Gerry and is a very different film to THE WAITING ROOM which had its first public screening at the Conference for the NCPC/Dying Matters Coalition.    Shown at the start of proceedings, the film quickly became a talking point for the remainder of the day as delegates recognised it as a cautionary tale for a health service faced with an ever increasing ageing population many of who will die with dementia.   You can watch it here.

This version of THE WAITING ROOM is 81/2 minutes long.   It should and could be longer – it should and could be made available as a educational or training resource for all in the caring professions.    But without adequate funding we are not currently in a position to develop the project further.   So …  if you or you know anyone who can help us achieve this goal, please do contact us.

Here’s what people have been saying about THE WAITING ROOM

“amazing man, loved by his family failed by the system “ – Beth Britton @bethyb1886 (Leading Dementia campaigner and blogger)

“harrowing to see footage of a highly intelligent inventor shut in an empty room without stimulation.   Jane has portrayed a hospital specialist dementia unit but it seems as if there’s no insight into the person they cared for”   Simon Chapman @SimonSimply (Director of Public Engagement,  National Council of Palliative Care)

“very moved by Jane Harris’ film about her Dad.   Reminds us to look for the person, not the disease”  Emma Hodges @StGilesDCEO (Deputy Chief Executive of St Giles Hospice

“a brilliant film”  – Professor Alastair Burns (National Clinical Director for Dementia – Dept. of Health)

“a powerful film – No person with dementia should spend four years in hospital” – Sharon Blackburn (Communication Director, Dementia Action Alliance)

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Unfortunately we didn’t have the following information at the screening of THE WAITING ROOM at the conference.    We have only just had a reply from the NHS trust for Ayrshire and Arran as to the total cost of Gerry’s care while he was in hospital.     And it is staggering – the cost per day for a patient in an Elderly Mental Health Bed is £408.      So the total costs for the four years that Gerry was in hospital amounts to close on £581,000.   But this is a minimum estimate and does not include the extras for two hip replacements and their aftercare, antipsychotic drugs, and the one to one observation that Gerry required to stop him getting out of his chair.      Compare that with the costs for keeping Jimmy’s mother Emily (of a similar age and with a similar condition – advanced alzheimers dementia) in a private residential home  – this is £650 per week or a possible £135,000 over four years – less than one quarter of the cost of Gerry’s care.     This raises so many questions we can’t go into here but if you’ve watched the film you will know that  this is money not well spent.

LINKS

www.dyingmatters.org 

www.ncpc.org.uk

www.alzheimers.org.uk

www.bethbritton.com

Farewell Gerry

 

 

 

 

 

SAY THEIR NAME AT CHRISTMAS – LBC Radio

Posted by jimma

 

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On Tuesday last Jane and I went into LBC radio studios to talk about the Compassionate Friends, Say Their Name at Christmas campaign.       We joined  Susan Hughes (TCF Press Officer and herself a bereaved parent) on the show hosted by Julia Hartley-Brewer.      You can listen to the complete recording here.

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For those visiting this page from beyond the UK shores, perhaps we should explain the source of amusement in this photo.  Producers of live radio are always nervous that their guests will ‘keep it clean” and LBC has these words of advice for its guests.   So what is it with the word ‘hunt’?- well, a couple of years back ago Jeremy Hunt who was then the Culture Secretary  was been interviewed by the very well known presenter of the BBC’s morning news show on Radio 4 (a Mr James Naughtie) and he got the minister’s name wrong calling him Mr C**t not Mr H**t.
Listen too to Jane’s BBC Radio Gloucestershire interview about Josh’s Memorial scheme

SAY THEIR NAME AT CHRISTMAS

Posted by jimma

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This is  The Compassionate Friends Awareness Week and it culminates next Sunday  8th December with a Worldwide Candle Lighting Ceremony.    The week coincides with the launch of a new campaign SAY THEIR NAME AT CHRISTMAS,  the film we made for TCF as its centre piece.

“Christmas is one of the most difficult times for any family that is grieving for the child that was such a vibrant part of their lives. The conflict between pressure to celebrate and the pain of missing someone so special at this time can be unbearable.”  so says Shaun Hewitt, TCF trustee and participant in the film.

146249_WCL13-322x322pixelThe TCF Worldwide Candle lighting ceremony is believed to be the largest mass candle lighting on the globe.    Originating in the United States in 1997, hundreds of formal and informal events will take place at 7 pm local time, as families light candles to honour and remember their children who have died.     We can imagine a virtual 24 hour wave of light as it moves from time zone to time zone.    Jane and I will light a candle for Josh along with new friends at our local meeting of TCF here in the Stroud Valleys.   We could do this at home but there is something about joining with others both locally on a huge global scale that helps us to understand that Josh death can be acknowledged without fear … painful and sad it is not to have him especially at Christmas, but to partake in a collective action puts his death into a broader perspective and we will be in the company of those who are not afraid of showing their feelings or perhaps more importantly, not afraid of hurting ours.   

It is estimated that in the UK alone, over 6000 young people under the age of 20 die each year leaving behind 20,000 to 30,000 newly bereaved parents and siblings. The vast majority of families who have lost a child keep that person with them for the rest of their lives and need to Say Their Name and have their name spoken at all times.  But in our culture talking about a young person who has died is one of the last taboos.  As we have found, despite the best of intentions, many people do not know what to say and a common reaction is to say nothing at all. But that is the worst thing and leaves many bereaved families feeling isolated.  For that reason the whole Christmas thing can be very difficult.   Many bereaved families, for instance, struggle with insensitive Christmas cards, often sent as a matter of habit, but with messages such as “Have a great Christmas” and with no mention of the person who has died or the difficulties the family are experiencing.  Family gatherings, office parties and New Years Eve events all have a tremendous pressure to be festive, and I personally find it very hard to take part.    It’s not that we can’t enjoy ourselves and have a laugh, its because we want to include Josh in as much that we do as possible, but to mention his name seems to threaten a sort come down on the party atmosphere,  an assault even on the general air of celebration.

So to have a special event like the candle lightings is a wee antidote to pressures of Christmas and it would be nice if you could join us – or let us know if you can light a candle for Josh or for any other child you love and is no longer with us.

Thank you

Jimmy

Click here to watch SAY THEIR NAMEbecki FF

 

Ps Jane, Jimmy, Joe and Rosa will all be in Budapest this Christmas to holler Joshua’s name loud and clear across the Hungarian rooftops.

FAREWELL MAGAZINE writes about how we said ‘goodbye’

Posted by jimma

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Farewell Magazine is a quarterly life style mag (death style mag?) recently published and available in all good news agents and on line.     The Winter 2013 edition includes an article about Beyond Goodbye. Is this an indication of how far we have come in the business of ‘coming to terms’ with Josh’s death? Soon after he died and just as we had just as we had published Jimmy’s book Released, we were approached by a number of ‘press outlets’ asking to write up our story.   They weren’t all tacky ‘women’s own’ type mags but even the more dignified requests were something we really couldn’t be bothered with.    Now, nearly three years on, we have become more comfortable with the publicity that has come with the films we have made and the articles we ourselves have written.   In a way, this site Beyond Goodbye, has become a bit more than a memorial to one man, it seems by all accounts to have gathered momentum as an example of a new way of dealing with the aftermath of tragedy.   So while each and every day we still wake up to the terrible news that Josh is dead, our work in being more public in our grief has brought certain compensations.   If it has been difficult for some of our friends to stay alongside us on this journey, there are many out there in the wider world, that know what we are going through and in a way we have become part of a wider community of the bereaved.

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Before Josh died, and before we became involved with charities like The Compassionate Friends and Dying Matters, we wouldn’t have given a moments thought to the idea of picking up a mag like “Farewell’ or to peruse it’s contents in search of advice about how best to arrange a funeral.   ‘Excuse me that’s someone else’s story’, I would have said, ‘nothing to do with me.’  Life after all is about living.  Most of us have an inbuilt and necessary fear of death which makes the subject understandably hard to talk about – and those that do are seen as.. well.. morbid.  But now we live with death every day. Joshua’s life and his death are our minute by minute companions.  And it’s not morbid. Despite the hurt, the anguish and constant trawl for some relief, life in a strange way, now has more meaning and more purpose.

So death is now our story and although it still feels odd that someone would want to write it up in a glossy mag, we are I think OK with that.    The article has some familiar pictures of Josh and uses Fred Chance’s brilliant photo of Matara as the backdrop to the front page.     It covers our reasons for doing the funeral our way as well as nice words about Beyond Goodbye, ‘a collection of online ideas that remember Josh … Taken together, its a project of real work and a challenge to traditional introverted expressions of grief and mourning.’

To read the full article click here to download  - Farewell Winter 2013 or go to your local WHSmiths and cough up £3.95.   The article is on Page 41

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A WITNESS TO GRIEF

Posted by jimma

A Witness to Grief – By Jane

‘I had no idea how to talk to the bereaved. Until then I’d mostly avoided those who’d lost loved ones. I didn’t know what to say so I said nothing. In a culture that’s distinctly uncomfortable with pain, this is a safe position for many people. We don’t like to look that kind of loss in the eye for fear it might swallow us.”

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Fiona Hunter and Jude

So writes Jill Stark and the bereaved she is talking about is her oldest friend Fiona Hunter whose 5 year old son Jude died just three hours after being diagnosed with pulmonary hypertension just before Christmas 2011. Jill, is a journalist, and she was preparing to fly back from Australia just having received the news of the little boys death.  On her way she found herself in the self help section of a bookshop searching for ways to support her friend and feeling at a complete loss as to how to respond to her friends grief.     “My impotence was matched only by the abject futility of the titles – When bad things happen to good people, Beyond the broken Heart”  It was she says “like trying to fight a firestorm with a watering can”.

And as I continued to read her article (Giving Grief a Voice) I was struck by  the way that Jill was prepared to go that extra mile to try and make sense of something so senseless, so unthinkable.   Something which also involved facing her own fears of talking openly about what is everyone’s worst nightmare, the death of a child.

And I know from the nightmare of Josh’s death that when a child dies everything is thrown up in the air – nothing is ever the same again.  I will never ‘get over’ or ‘move on’ from Josh’s death, but some of my friends have reacted in ways that suggest they wished I could.  Grief taps into emotions and feelings that I never knew existed either for me or my friends.  Reading about what grief is like from the perspective of another bereaved parent’s friend, from someone who was, it seemed, prepared to face her own demons is  therapeutic and comforting.   Jill acknowledges her friends pain with an unabashed honesty.   ‘Grief isn’t pretty and it’s rarely quiet.  It can be a skin-scratching evisceration, that rattles through every nerve ending and rasps on each breathe.  Denying it a voice isn’t healthy.  And it’s an insult to those we’ve lost.’

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Josh

One friend of mine admitted that for her it was scarey and uncomfortable to talk about Josh.  She was afraid of upsetting us and deemed it probably safer to say nothing.  I explained the ‘elephant in the room’ syndrome – when nobody talks about Josh it makes it so much harder for us to relax in social situations.  Instead we put on a mask that says ‘I’m OK – please don’t bother yourself with my sadness’. This, it seems, only prolongs the silence. I know that to see someone grieving is not a comfortable sight. It’s unpredictable and raw and I use the mask to hide my pain. I’m sure that in the earlier stages of life after Josh,  I must have seemed like an enigma to my friends.   I’ve landed on a strange planet and they no longer recognize me.   But I was seeing them differently as well.

In his new book ‘An Astronauts Guide to Life’,  Chris Hadfield  talks about what it was like to see the earth from the moon for the first time.  He would, he said, never see the earth in the same way again.   Grief colours your world differently and we are strange to others.    But tiptoeing around the bereaved like they are aliens is not right.

Parents of Jude’s school friends hang their heads when they see his mother Fiona arriving in the playground. ‘I’ve gone from arranging play dates’ she says, ‘to a harbinger of doom, someone who was there just to remind them of their own mortality’.   The fear of saying the wrong thing may well be a natural response when in the company of the bereaved, but it is not at all helpful.   Grief needs to be spoken.  ‘One of the hardest things in the aftermath of Jude’s death’ says Fiona, ‘was the feeling he was being erased.  Some people would say anything to avoid talking about him …. (but) to mention his name doesn’t remind me that he died, it lets me know the people remember that he lived.’

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Jude

I’m  reminded of the early days of racism and disability awareness when instead of bravely addressing the discomfort felt whilst in the presence of black or disabled people there was an expectation that they themselves had to speak up to defend themselves and justify their existence.    Since Josh died I have felt  similarly isolated though I don’t think the prejudice is as overt, and it is important to say here that I am neither black nor disabled.    On so many occasions I have longed for someone to speak out on our behalf, to meet us where we are rather than us having to educate or guide others around the new us.

As I wrote this article I thought I’d give it a reality test with one of the many close friends who supported us tirelessly with Josh’s funeral.  Claire Schimmer told me  ‘It’s probably unsurprising that we’re ill-equipped to deal with the consequences of an unexpected death in our own communities. We prefer our death to be Scandinavian noir where the murderer is always brought to justice in the end and we can watch the grief of the parent/spouse/child from a safe distance knowing that its actually only acting   It’s difficult and confusing being with friends who are grieving, not just because of the lack of vocabulary but because, if we’re honest, one of the first thoughts is ‘thank God it wasn’t me’.

Jimmy and I made a conscious decision to speak out and write about what it is to experience the death of a child.  While many of our feelings still remain private there is much that we want to be more public about, hence this website.   If sharing means we might ease our own burden, it also might just help others overcome their own fears about untimely death, or any death for that matter.  We might then feel less isolated,

Claire again: ‘I’ve also learned that it’s reasonable to be curious, to ask questions and not feel that somehow the interest is obtrusive or even unhealthy – and that’s the unexpected bit; I feel that what I’ve learned from this hasn’t made me more anxious about death, but rather the opposite. I’m still very glad it wasn’t me, but I don’t feel guilty about that any more, and I understand now that it doesn’t get easier and you don’t move on, but that shouldn’t stop the friendship as it might bring things you otherwise wouldn’t find.’

Jude’s mum Fiona probably puts on a similar mask to mine. She also wishes people wouldn’t misunderstand her sense of being okay. ‘They shouldn’t decide that I’ve moved on, accepted my loss or (god forbid) replaced my precious son. Instead people should know that it’s possible to choose to be okay whilst at the same time living with a broken heart.’

I am changed and in many ways I’m OK with that.  Perhaps it’s the passage of time. My hope is that others will take the risk to find out a bit more about what this change means. As Fiona’s friend Jill Stark has done: ‘I can promise my friend that I will never say “enough now” I will never tire of hearing her talk about Jude and I will continue to remember her crazy-beautiful boy and say his name out loud for as long as I have breath in my body.’

This journey has not been easy for me or for my friends. Many have had to bear witness to my grief and our friendships have been tested but most have survived.
Thank you.

Jane

November 2013

Jill Stark’s article can be found here Giving grief a voice

Fiona Hunter’s blog is here 500 miles

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Me and Josh

BEFORE GOODBYE

Posted by jimma

BEFORE GOODBYE


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This is Emily, my mum and Joshua’s grandmother.    She is 96 and has alzheimers dementia.  Until a few months ago she was still living in her own home and on her own.  Then, after yet another fall in the middle of the night, and yet another visit to hospital, we decided to accept the inevitable and look for a care home where she could live out the rest of her days in relative comfort and safety.

And that’s what she is doing now – living out the rest of her days.    And what we are doing is preparing for another ‘goodbye’.  Visitors to this website will have seen our posts to honour Jane’s father Gerry who died earlier this year.  As with Gerry  (though tragically not with Josh), we can take our time as we gather ourselves for what will be we hope a very ordinary and peaceful death – a death in the right order of things.   Though the fog of dementia is thickening by the day there is still enough Mum there for us to collect our thoughts and share some laughs.  Jane and I visit as often as we can.  Sometimes together, sometimes separately.  I enjoy my moments alone with Emily.  I’m making up for the moments I couldn’t spend with Joshua before he died.

How you doing today Mum?

Much the same, old and doddery

You’re looking well

Am I?  I don’t feel it.  It’s about time you put me in the oven

I know.  You’ve been saying that for ages

Have I?   Can’t remember…. What’s the day today

Wednesday

What time is it?

 Half past twelve

 Can’t you do something?

 How do you mean?

 Help me

 Help you what?

 Just help me to go.  I’ve had enough … 

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Emily is not unhappy.  She is not distressed.  It’s only when she gets a urine or some other infection that she can become a bit agitated and start to hallucinate.  But these are minor episodes in a life that is gradually and quietly ebbing away.   Of late when I visit,  I often find her still in bed, not bothering to get up and dressed.   Any talk of going for a walk, across the road to the pub, or just downstairs for a cup of tea is now redundant.   She is still bright and alert, if muddled and very forgetful.  This does have its advantages.   I can tell her over and over that my brother Ned will be visiting from America in a couple of weeks and her smile receives the news as if for the first time.

But she is tired; she’s tired of living and not afraid to say so.   She has always stubbornly asserted what she wants out of life even if, as often happened she failed to get it.  And at those times she has accepted her fate with grace and humour.   She never ever want to live on a chicken farm – that was my Dad’s idea to help pay for our education.    She hated the idea of her little ones being sent away to boarding school but agreed it was for the best.     She was dogged in her determination never to end up in one of ‘those homes’ but now she has, she quite likes it, at least that’s what she has chosen to like –  seeing, as for her, it’s so much like home, it’s not really one of ‘those homes’.

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Our talk of how long she still has left to live comes with surprising ease.   Maybe that’s because, since Josh died, I am now much more in tune with what death really means to those of us who are still here.  It certainly is a relief to be able to converse with someone about to die without fear of upset.   I say ‘about to die’  only because, for the moment, we are merely talking about it rather than expecting it any time soon.  I’ve been witness to such conversations for many years now.     This is Emily and her friend Yvonne in 2008.

Yvonne:     I don’t think any of us are going anywhere.  Talk about going to  heaven and hell is a lot of nonsense.   I think when you die that’s it

Emily:   Oh that’s what I think too

Y:    You didn’t exist before you were born

E:    No I said where were you before you were born

Y:   You weren’t activated then

Jimmy:  What do you think happens then?

Y:   Well I think you go to sleep and you’ve had your life.  Eternal life doesn’t mean that the person lives on forever in one form or another. Not in my mind.  Eternal life to me is the eternal chain of people having children.  You’ve given life to another being and hopefully they’ll go on …

E:    Yes and they’ve given it too and on and on and on …

Y:    You see I’m the one who’s let the side down.  You should, by rights have children.

E :   You’re the one that’s ended the line

Y:    Yes, that’s wrong

13464245(600)Josh’s grandmother

13464228a(600)Josh’s great grandmother

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Our line of course doesn’t end with Emily.   She has three children, eight grandchildren and four great grandchildren and we spend many hours trying to remember who belongs to who.  For memory to function it seems, we need a narrative.  A faulty memory needs a narrative even more.  My mum has lots of these stories, she tells them over and over and we try to listen as if we are hearing them for the first time.  There’s the time when during ‘the war’ her father refused to give her a pay rise so she ‘upped and left’ to find another job in a Liverpool department store – but when she got there she discovered the place had been bombed during the night.  All that was left was a man at a desk in the underground car park “if thee wants a job you can get yourself up t’roof  and keep a look out”.   Maybe one should never question the wisdom of old age, even when big holes appear in the logic of their stories.   But if the store had been bombed so, how come there was still a roof to look out from.

There are similar quirky errors in how she narrates the story of Josh’s death.    Josh was traveling up the road when a woman stepped out  – he swerved to avoid her and went under a bus coming the other way.   Well its a good enough account and we are not about to challenge it.   For her, as for us, its not how Josh died but the fact that he’s dead that is so… so painful.    And in the same way that she hears with singular pleasure, the oft repeated  news of my brothers arrival, so she must visit the shock and the distress of hearing about Josh’s death again and again.

Josh is up on the hill now isn’t he.   There’s a gap in the hedge and you can see right down the valley.    I want you to take me up there too.

Two out of three Mum.   Josh is up on the hill and you can see right down the valley, but there is no hedge.    It is a wonderful view especially as the sun sets and of course you can go up there with him.   He’d love to have you by his side.

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We may have years yet before Emily goes;  or it may be only months before we say goodbye for real and forever.  But I know that, because we have these talks, and because we can still share our sorrows, when her time comes, our final farewell will have greater depth.  It will resonate longer and with less pain.  If only by contrast with Josh’s death, his grandmother’s is, at least in ‘the right order of things’.  And who knows as and when we say goodbye to Emily for the last time, we will see Josh in the distance waving as well.

Thanks for reading

Jimmy

October 2013

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(To see how Emily’s conversation with Yvonne went, it features in my film THIS IS PURGATORY which you can view here) 

 

 

 

 
 

SAY THEIR NAME – and the winner is… ?

Posted by jimma

Bournemouth September 2013

SAY THEIR NAME, the film we made for TCF was up for an award for the Best Internet Bereavement Resource category of  The Good Funeral Awards – and whaddya know – we won it!

Jimmy, Pam St Clement, Jane

Hmmm… Strange trophy perhaps – a minature wicker coffin but given that the event is organised by THE GOOD FUNERAL GUIDE hardly surprising – and its bigger than an Oscar (and lighter than my Bafta!)    In effect The Good Funeral Awards are the annual shindig of what we have come to know as the “deathies’.    In attendance were the great and the good from the world of funeral directors, celebrants, bereavement counsellors, coffin builders and grave diggers – as well as Pam St Clement (whose on screen death as Pat Butcher in East Enders has clearly touched many a heart) was there to dish out the prizes.

Josh’s death is of course why we are here.  If Josh had not died we would not have become involved with The Compassionate Friends, we would not have made their video, and we wouldn’t be standing shoulder to shoulder with some of the most caring, compassionate and enlightened people we have met, because in truth these ‘deathies’ really are such.    No morbid bunch of  funeral stalkers these, more, this is a movement that is in the forefront of  changeing the way we all deal with and talk about death.   It truly is a terrible thing, but in a way it has taken the death of our son for us to really find that degree of self knowledge that allows us to be more accepting of  death and more comfortable talking about it.   To paraphrase one of the delegates Clarissa Tan – recognising “the finality of death is hard, but the uncertainties of life are perhaps even harder” – to talk about death really is to find out more about living.

And thats what we were doing in the run up to the award ceremony, as we joined a dozen or so others in a yurt in the garden of the hotel in Bournemouth.     Have you heard of ‘death cafe’s’? Well this was a ‘death cafe’ and they are springing up all over.    A bit like pop up restaurants but with death on the menu … a freakish, weird thing to do by most peoples standards maybe, but here atmosphere was relaxed, intimate and unafraid – no one blinked and there were no awkward silences when one member announced she had cancer and we told of our loss.    All were equal whatever their story – death as the great leveller!

Death Cafe

Back to SAY THEIR NAME and the awards.   This was a glittering, champagne laden affair taking the form of all such occasions – “the nominees are …. the winner is” etc.   And it didn’t disappoint as we sat nervously clutching each other, ready to be losers but wanting to win.   Ah! the competitive spirit that always trumps even the most sober cause.   Maybe not quite that sober.  Acceptance speech?  Jane was brilliant – no blushes and no gushes – enough said.    But  we can say that representing the film and TCF at the award ceremony was a real honour if only because people  have been so positive about it – as per these quotes

“One of the most moving pieces of film that I’ve seen and utterly deserving of multiple awards in testimony to the powerful truths spoken by the parents we saw.” Fran Hall
“Wow that is brilliant (she says wiping away tears) …  I hope that I can use this short film in my work. That footage has really helped me especially today since yesterdays funeral of a 15 year old girl so tragically taken is fresh in my thoughts.” Claire 
“Really beautiful work – to showcase such articulate storytelling and promote remembrance.”   Kathryn Edwards
“I was with each parent and sibling, deeply listening to them name and remember their loved one. It’s a good thing, this.” Kate.
I am still in awe of people who meet death everyday in their professional lives and I wonder what draws them to be undertakers, celebrants or soul midwives (a new one this).   I suspect most have had  painful experiences, themselves, but instead of hiding them away, they are using them to help us all confront our deepest fear – not of death but of life.
Thanks for reading
Jimmy

12th September

Jane talks to sculptor, Davina Kemble, about her pebble coffins

 

A full list of the award winners can be seen here

note the women to men ratio! – (photo: David Graham)

SAY THIER NAME nominated for Award

Posted by jimma

SAY THEIR NAME

A COMPASSIONATE FRIENDS VIDEO

PRODUCED BY BEYOND GOODBYE

More nice news – SAY THEIR NAME has been nominated in the Good Funeral Awards 2013, to be held in Bournemouth on 7th September.    The video, which we made for THE COMPASSIONATE FRIENDS, is in the running for the Best Internet Bereavement Resource and I have to say we are honoured, excited and encouraged by the recognition it has received.

The Good Funeral AwardsNow in its second year, The Good Funeral Awards is actually the brainchild of Charles Cowling who writes, promotes and speaks up on everything do with making sure that the funeral you have is the one you want.      As well as being a consumer guide to the Funeral Industry, Cowlings blog and book “The Good Funeral Guide”  is an advocate for independence of mind, spirit and body, especially if its a dead one.       Interestingly, though the awards are primarily about the ‘funeral world’ with other catagories like ‘The best Gravedigger of the Year’, ‘The best Embalmer of the Year’ and the “Eternal Slumber Award for Coffin Supplier of the Year”, they are also shine a significant light on our understanding of death and patbutcherbereavement in contemporary society.   Its probably true to say that ‘gallows humour’ mixes with serious intent as more than 75 nominees compete for 15 different awards.

This years ceremony will be hosted by Pam St Clement who as many will know starred as Pat Butcher in Eastenders culminating in a brilliant dying scene which touched millions of viewers.

If you haven’t yet watched SAY THEIR NAME you can view it here – SAY THEIR NAME

As we have noted before, we believe the video to be the only one of its kind in this country – made by and for bereaved parents, it gives comfort to the newly bereaved and understanding to their friends and family.

For reviews of the film click  Film reaches out to bereaved parents | Dying Matters – Dying Matters is a broad based national coalition of 30,000 members, which aims to change public knowledge, attitudes and behaviours towards dying, death and bereavement.

Click  THE GOOD FUNERAL AWARDS  for more information about this years event.

Anyone fancy going please let us know so we can meet up.

Jimmy

August 2013