Today is World Remembrance Day for Road Traffic Victims which has particular significance for us (Josh died in an RTA in Vietnam) and for many who read these pages. We’d therefore also like to remember our friends whose children have died in road accident, especially Bruno, Max and Conrad who died in Thailand in 2011, and Jessica who died while crossing the road in SE London in 2007.
To commemorate the day, Jane was asked to talk on BBC Radio Gloucestershire this morning and to share her thoughts about surviving the death of a child. You can listen to the interview here
Road Peace is the UK’s leading charity campaigning on behalf of victims of road traffic accidents. As their website explains :Â A road death is not a normal death – it is sudden, violent, unexpected, and premature. Every day, 5 people die on the roads in the UK and 3900 die worldwide
1 in 75 of us is bereaved through a road crash.
And today Ban Ki-Moon (secretary general of the UN) said “I am continually inspired by the potential of youth to transform society. The World Day of Remembrance for Road Traffic Victims is a sobering reminder that crashes are the leading cause of death for people 15 to 29 years old. Road traffic crashes also claim many younger victims, with more than 500 children killed each day as they travel to and from school, playgrounds and the homes of family and friends. Millions of other people of all ages are seriously injured”
On Tuesday 5th August 2014 the Harris clan gathered for the funeral of Josh’s grandmother Pat Harris. This was the third family funeral in as many years and we were quite apprehensive about yet another cremation and the possible return of  previous painful memories. As she bore her mother’s coffin into the crematorium Jane was conscious of her now ‘orphan’ status and what this might mean both as a daughter and a mother. In a sense we have been caught in the middle of different generational deaths – while we have a good enough word - ‘orphan’ – for a child without parents, we are yet to discover what we should call a parent whose child has died. And while the feelings and the sadness and the pain are so very different we both felt it important we should somehow equate them and make Josh too part of this ceremony for his grandmother. We have a lovely photo of Josh (aged 3) on holiday with Pat and Gerry – sadly one of only a few of the three of them – which we included on the order of service and Josh was mentioned a number of times throughout the day. To be honest this is not easy, we do not want to ‘dilute’ that sense of honour and respect we have for Pat, but at the same time her death and her funeral (as did Gerry’s) wouldn’t seem nearly as significant without Josh being there too. After all he was their grandson and theirs to mourn as we mourn them.
In the end this blending of memories seem to work even though many of Pat’s friends had never met Josh. Compared to the way we said ‘goodbye’ to Josh, both Pat’s and Gerry’s funerals were more mute affairs though we carried forward the idea of inviting people to write messages on ribbons which could be tied to a flower and laid on the coffin as a central ‘doing’ act to the ritual.  Although there are strong Jewish roots to the family, our funerals are non religious and perhaps a bit ‘modern’ provoking one elderly relative afterwards to remark “what kind of funeral was that?” Our wonderful celebrant Ian Stirling was quick to respond – “that was a Pat Harris kind of funeral.”
Funerals are of course for the living – and for what we take away from them as much as the memories we bring. We were all very moved by the poem that Jane read at the service and reproduced below. We know now that grief is hard work, maybe not so much for the death of a parent or a grandparent as it is for your child; but work nevertheless. And in that work, and in that experience of grief, inevitably we learn new things, new ways of looking at life. That is the gift our loved ones leave us.
“Comes The Dawn” by Veronica A. Shoffstall
After a while you learn the subtle difference
Between holding a hand and chaining a soul,
And you learn that love doesn’t mean leaning
And company doesn’t mean security,
And you begin to learn that kisses aren’t contracts
And presents aren’t promises,
And you begin to accept your defeats
With your head up and your eyes open
With the grace of a woman, not the grief of a child,
And you learn to build all your roads on today,
Because tomorrow’s ground is too uncertain for plans,
And futures have a way of falling down in mid-flight.
After a while you learn
That even sunshine burns if you get too much.
So you plant your own garden and decorate your own soul,
Instead of waiting for someone to bring you flowers.
And you learn that you really can endure…
That you really are strong,
And you really do have worth.
And you learn and learn…
With every goodbye you learn.
This is one of the last photos we took of Pat, just two months before she died. We had recently collected Gerry’s ashes from the undertakers (this was over a year since he died - why it took so long is anybody’s guess)  and Pat had asked that they be scattered around a particular tree in the old family home near the golf courses in Troon. The tree had been given to them as a wedding present in 1951 and was one of many that Gerry planted subsequently in the many years they lived there. But the house now has new owners  and we needed to get their permission. We had planned to do this on our next visit but life and death intervened.
It was the day following Pat’s funeral then, that we met again for another special ritual. Jane had asked the present occupiers of the house who kindly obliged – and with considerable grace as their afternoon was about to be disturbed by eight adults and two children, none of whom were dressed in the manner customarily required for the dignified disposal of a family patriarch.   Neither of us can remember being so involved in the funerals of our grandparents. In fact we were positively discouraged from even attending. In those days it wasn’t seen at all appropriate that young children should be present on such occasions – something to do with protecting their innocence, shielding them from sadness, from raw feelings. Yet here we were half a century later, on a bright summer’s day wandering around somebody else’s garden, carrying a box of human remains and with kids in tow!
‘With every goodbye you learn …’   And that learning can and maybe should start at any age, best done in the act of doing, of actual participation in ritual. For Pat and Gerry’s great grandchildren, Naomi and Louis, even while they may not recognise the full meaning of this day, hopefully they will remember the weight and the feel of their forebears ashes as no less fearful than the  bark on the tree and the dirt in the ground.
Thank you for reading
Jane and JimmyÂ
August 2014
For an evocative set of photographs from the day of Granny Pat’s funeral please take a look at this gallery
‘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.â€
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 Heartâ€Â It was she says “like trying to fight a firestorm with a watering canâ€.
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.’
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.’
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.
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. Â Â Have you heard of ‘death cafe’s’? Well this was a ‘death cafe’ and they are springing up all over. Â Â 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. Â Â 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) … Â 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.” ClaireÂ
“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
Death is always a shock. Even though Josh’s grandpa Gerry had been living with dementia for a good many years; even though he had recently been moved to the end of life ward at the hospital where he spent the last four of those years; even though we had been told that his temperature had dropped to 31 C, that he had been put on the Liverpool Care Pathway and was not expected to last for more than a few days or weeks; even though we had visited him and could see for ourselves that Gerry would not “be getting up from this oneâ€, still death comes as a shock.
Josh’s Grandpa is Jane’s dad and we loved him very much. That is why his death, his life no more, is still hard to take in. Gerry was 95 and had had a good and inventful (sic) life. The obituary in the Glasgow Herald headlined him as “businessman, inventor and pilot who taught Prince Philip to fly.â€Â  He was nearly 80 when his last creation, a revolutionary fire fighting device, won the John Logie Baird Award for innovation in 1996.   We are sad to see him go, but we are at peace with his passing.  Unlike Josh’s, Gerry’s death is in the natural order of things.    If there is a timetable for death, if there is fairness in death, then clearly Josh died too soon and Gerry perhaps too late.
In hospital – June 2012
But justice is a concern for the living – for death itself there is no moral dilemma.  It remains for us who would still breathe to make an account of these deaths, to mourn them as we do, and to wonder if there can be anything like a good death.
By strange coincidence, on the weekend between Gerry’s death and his funeral, Jane and I had attended a symposium on “what makes a good deathâ€.  Organized by the Wellcome Foundation, and intended to contribute to a growing conversation about death and dying, we were both curious about how others were dealing with and talking about this so-called ‘difficult’ subject.   The show opened with various readings from literature including Roger McGough’s poem …
Let me die a youngman’s death
not a clean and inbetween
the sheets holywater death
not a famous-last-words
peaceful out of breath death
When I’m 73 and in constant good tumour may I be mown down at dawn by a bright red sports car on my way home from an all night party ….
It continues in similar vein.    To my mind a rather distasteful attempt to glamorize death, to sanitize it and to take death away from its natural place as a conclusion to life’s inevitable story.   In these lines you can find both Gerry and Joshua but neither of these deaths were in reality what McGough would wish for as his own ‘good’ death – Josh never got to be 73 and Gerry, instead of a slow decline to a morphined non-existence would, I suspect, much rather have gone out with a bang.
The day before Gerry died
What the poem does point to though is the wish to have some kind of conscious control over how we die.  In modern society this is presented almost as a consumer choice; the planned for death, with living wills and demands for legally assisted suicide. The more agency we have, the better our death will be – if it is we, that is, who are doing the dying.    But what of those left behind?   After ‘our’ death it is still left to the living to mourn the nature, tragic or otherwise, and the consequences of our death.   So perhaps a better question to be asking is “who is the good death for – the living or the dead?â€Â   Or both.   If we understand our lives, our individual selfish lives to have meaning only in relationship with others, (…… no man is an island etc) then our dying and our being dead can only find fitting resonance with the survivors of our death.   For both Gerry and Joshua who now know no more of their lives, this is actually meaningless.   For us it couldn’t be more relevant.
While Gerry’s was to be expected, the unnatural circumstances of Joshua’s death precludes an easy ‘inbetween the sheets’ kind of mourning as we struggle to continue our relationship with him.  His life cut short creates a vacuum not only in our hearts but also in the story we would want to tell of him: we fill it by projecting our wishes and ambitions for him on to the future he never had.   If Josh were alive now, he’d have found another job, he’d have found another lover, he’d have traveled again, set up his own video production company making underwater music films, he might even have gone back to college. Our dreams for Joshua will forever haunt our nights and days, but we have no need for such fantasies for what an old man might do with the rest of his life.    A good death is perhaps possible only after, what McGough’s poem doesn’t reveal, that which makes for a good and full life, as lived by Jane’s Dad, Gerry.
How then to tell of the life that gave life – that gave life to Jane and thence to Josh and our other children?   I have known Gerry for as long as I have known his daughter. My first encounter with him was when he took us out for dinner soon after the two of us had got together. I was immediately taken and excited by his anarchic behaviour, his unabashed sociability and his seeming need to display both as publicly as possible.  If there was a table to dance on he’d be the first on it.
Gerry Harris was an engineer by trade, but I knew him best as a difficult father, an over protective husband, a terrible businessman, a gifted if slightly bonkers inventor.   Gerry’s triumph was BLASTER, a water jet that started life as a new form of garden sprinkler but ended up as a fire fighting device that could drench flames in seconds and with minimal water damage.  Gerry had first showed me his creation a few years before and we now have precious video footage of him running round his garden in the pouring rain as he attempts to activate a series of sprinklers made from bits of bicycle and beer bottle caps.  These rudimentary contraptions were to become BLASTER or … wait for it – ‘Boundary Layer And Surface Tension Energy Release’. By introducing a carefully positioned rotor blade in the path of the water jet Gerry had found a way to turn water (a liquid) into water vapour (a gas), so reducing the amount of water needed to put out a fire by a thousand fold.  Gerry was not only well into his 80’s when he discovered this but also well on the way to establishing a principle that may still revolutionize fire control.  Â
If Gerry had a ‘good’ life how was his death?  Or how was his ‘dying’?
Gerry began his last journey 5 years ago when after a series of small strokes he developed vascular dementia, a cruel disease that slowly robs the person of their capacity to reason and to hold thoughts in any meaningful way. From our visits to see him over this time it’s difficult to say whether Gerry’s emotional being, his own personhood, suffered a similar decline.  The one question the family always seemed to be asking – how much of Gerry is still there? – was never really answered. But death stalked that question at every turn as the frustrations of the disease and its affects on other members of the family began to take its toll.  That and the inadequacies of the care system that Gerry seem to be caught up in – all seemed to conspire to invite death’s continual refrain – when shall you summon me?
In fact Gerry exhibited super human strength in his will to stay alive.  Whilst in hospital he broke his hip twice occasioning major surgery both times and was later sent back to the ICU with a collapsed lung. Gerry was fit. He had incredible energy both mental and physical. Despite the progress of the disease Gerry remained bored out of his mind, and despite being confined in his chair, no longer able to walk, he remained constantly on edge with an almost manic inability to sit still.   Ironically it was this energy that would keep him living with the distressing effects of dementia for so long.
You can see something of Gerry’s life in this short film we prepared for the family to watch the day before his funeral. Â Â An early scene in which Gerry recites one of his favorite poems was filmed shortly after he was admitted to hospital. Â Click on play button in the bottom left of the screen.
Putting this film together was, as you might be able to imagine, a rather delightful experience, sad but rewarding and I was honoured to be able to do this for Gerry and for Jane’s mum Pat and her brothers. Â It felt like I was contributing to the postscript to a long and successful life story. Â Â What I was not doing was dealing with a trauma. Â In that sense their was no distress, no break down of confidence, no insecurity, no fear, all of which were so present in the months following Josh’s death. Â Â Equally and despite the initial shock of witnessing Gerry’s lifeless form, I suspect we will be able to ‘move on’ from his death in ways that we are not able to with Josh. Â This I think has to do with the way that we as parents are changed as a result of the death of our child – fundamentally and irrevocably changed.
By contrast to Josh’s, Gerry’s funeral was a very small affair, this partly because of Jane’s mum’s wish to keep it very low key and private, but also because of the simple fact that by the time you get to 95 you actually don’t have many friends left to bid you farewell.  Josh of course was known by many, old and young.   If there over 300 who came to say goodbye to Josh, just 12 of us attended Gerry’s funeral not including the celebrant and the funeral directors.  But it was no less meaningful for that.   There was something poignant in its very ordinariness that gave comfort to the idea that death is survivable, no matter if it’s your grandfather or your son.
Last week we survived (is that the right word) the second anniversary of Josh’s death.
Two years ago last Wednesday 16th January Josh was riding along the Ho Chi Minh Highway, a couple of days out of Hanoi and on his way south. Then – accident – we are still not precisely clear what happened – but in a second his life was gone.
That was two years ago and still it’s hard to believe the reality of our lives. Each morning is still a trial – one of having face yet again the enormity of the tragedy – to wake and be brought face to face for the umpteenth time that Josh is no more and that our family of five is now so deplete. All made worse  in the days leading up to his “anniversary†or his ‘death day’ as we struggle but want to call it.
Just what does this particular day hold that the others don’t? Do we really want to mark it was we would celebrate a ‘birthday’? We know that many bereaved parents really dread the day and hate the idea that the anniversary of their child’s death should in anyway be separated out from all the other terrible days of our lives. Its only a day, one moment in time that often bears no importance to the actual death and who invented time anyway.
Josh in Hanoi
But we think they are important. Last Wednesday, on Josh’s ‘deathday’, we met with Joe and Rosa and had lunch at one of his favorite restaurants in Borough Market, near where he used to work at the Ministry of Sound. We remembered Josh, considered how our lives had changed and made plans for our trip to Vietnam later this year. We placed the card his friends from the Ministry had sent at the end of the table and drank a toast to him and to us. This was our own private ritual, important for us to come together on a significant date and to recognize jointly what we all go through everyday individually. We can’t always be together but if there are times when we can make an ordinary day special and shared with love, then surely josh’s birthday and his deathday are those. The ritual is nothing if not the coming together in an act of shared remembering.
But what was also really comforting about the day were the number of emails, cards and text messages we got – (such a relief from all the well intentioned but disturbing ‘happy christmasses’) and we’d like to share some of these simply beautiful heartfelt messages now –
A card from one of Josh’s old school friends –
“Another year is upon us and although the passing days bring closer the realisation of what it means to be me without Josh, they dont make it any easier. This is a difficult day not just because the world lost Josh but because we are all reminded how fast and relentlessly life goes on…..â€
and another –
“I think about you often and your life reminds me to live mine the way I want to and not let things hold me backâ€
From one of Rosa’s friends
“I am always here for you. These last couple of years I cant even begin to imagine how difficult it has really been and I am here for you every step of the way”
From a friend of ours-
“You will soon be waking to another day, another month, another year without Josh. Have been thinking about you and how much Josh accomplished in his 22 years of life….and how much you have accomplished in his name and memory in the 2 years since he died……..”
From another bereaved parent
“these anniversaries are awful days, we shouldnt have to have them in our diaries, it all just sucks. I will light a candle for Joshua tonight ….â€
From a friend whose daughter was born at the same time as Josh
“thinking of you all we will light a candle for josh tonight and leave it burning till morningâ€
From a neighbour
“Just to tell you that we are thinking of you both as we come up to the second anniversary of Josh’s death. It must be an acutely difficult time for you and all the family. I know you will get support from each other. How to keep going when these things happen so randomly? Its impossible to answer these questions. Just let me know if you want to get out for a walk and a talk anytime.â€
These messages have given our family so much strength and really have made a difference. Jane was reminded of the day of Josh’s funeral when she felt her heart would break but realized that she felt safe and held by the love of everyone present.
So much has changed since Josh died. We are changed along with the slow dawning that the pain of losing a child is like no other. Like love, and grief is in the end all about love, it’s a pain that can’t be regulated, medicated, reasoned with or got over. But with the passing of time we are beginning to accept our new lives without Josh, and his absence is easier to live with. But this is a slow slow process and has no timetable. It will be what will be.
So two years on what has shifted? Gradually the fear and anger that is actually a normal part of grief and has at times led people to avoid us, has lessened. And that sense of isolation, which has so much to do with being locked into the moment of Josh life and death while everyone else’s moves on, that too has dissipated and we are touched and thankful to our friends old and new who have found the courage to stay alongside us on our grieving journey.
It’s held every year on the 1st November and is one of Mexico’s more well-known public holidays.Images of brightly coloured masks, skulls and skeletons dancing to street music in riotous celebration are what come to mind.
Somewhere between Hallowean and Thanksgiving, its an opportunity for families to remember their dead, both personal and well known public figures.
Last week, Jane and I attended The Dying Matters annual Day of the Dead conference in London.
I’ve just downed tools at the end of a long edit for a BBC 2 series covering a year in the life of Claridges, an exclusive hotel in the heart of London.    We’ve missed a number of deadlines but 12 o clock on Thursday 1st November is absolutely solid one – no more extensions – that’s it .. finito!  But its now 12.30 and we’re late. Jane and I are hurrying round the corner of the British Museum looking for the venue of the Dying Matters conference held to coincide with Mexico’s famous day.   We’ve been invited to screen the film of Josh’s funeral but I’m still not sure exactly what kind of occasion this is.  These days I find that it really doesn’t matter that I have no idea what we might be getting into – should I be nervous about speaking in front of a huge audience, are they professionals, charity workers, or bereaved parents like us. It seems Josh’s death has given me the wherewithal not to care about these things.
We arrive in a large room with a low false ceiling still relatively empty – strip lights, three large screens along one wall and around a dozen round tables decorated with homemade sculptures modeled on those familiar images of hollowed eye sockets and gaping jaw lines – there are bowls of sweets and plates of biscuits with similar blood dripping themes.Â
In one corner we find the table reserved for speakers.   Jane will easily fall into conversation with her neighbour; I enjoy a moment of my own silence among the gathering audience, now numbering close to a hundred.  It feels comfortable to be here.  There’s a growing buzz of chatter which I am not part of, but then I have always liked that moment when as a child I would drift off into my own reverie secure in the knowledge that the world was carrying on around me.
It’s a packed programme of speakers and presentations, power points and sincere deliveries – but the messages pass me by.   Something about volunteers to hold the hands of the dying, pathways to a good death, the launch of a form for funeral wishes, a film called “I didn’t want that†which I didn’t quite get.   Then Jane and I are standing by the podium, a little apprehensive now about introducing something of a more personal significance.
‘Beyond Goodbye’ has been seen by quite few people – maybe hundreds, perhaps a thousand or so – not exactly a blockbuster but gratifyingly, it does have an audience.  It’s been on this site and on Vimeo for nearly a year now, and we’ve had a load of feedback as to how moving and comforting the film is.  But this has been from people we either know well, or who are complete strangers.  In both these cases people have made a conscious choice to view the film.   Now as I stand here, it somehow feels like we are about to inflict our story and our grief on an audience who can’t escape.   And I can’t escape my doubt … of what value is this film to people who never knew Josh.  These were professional funeral directors, academics and educationalists, casino online social and care workers, concerned surely with changing policy and attitudes towards death and dying.  Why should they want to identify with our grief amongst all others in their lives or the world in general.
Then there were those nagging thoughts of what Josh himself would have made of this.     All those photos of him on the screens – 3 times over – his coffin, his parachute jump, his aliveness and his deadness.   Could he, would he, be happy with this spectacle?   In the dark, I’m not so much looking at a film, as reliving the past two years.  I can feel the trickle of a tear on my cheek.  I brush it away along with thoughts that in exposing him to the world, of exposing his death to all and sundry, we are doing him a disservice.  Is there in all this, something shameful about dying?  Something so wrong, culpable, especially at such a young age.  And do we as Josh’s grieving family carry that shame.  Is that what I’m feeling now?
I do NOT want the lights to come back on.     But they do, in a muted silence followed by a gentle gathering of applause.  As I stare fixedly at a paint crack on the wall, I imagine all eyes are on us.    Another of the speakers on our table hands me a note – “I’m glad I’m not on nextâ€.   The audience has been moved.   They have got to know Josh, and us, and his friends and they have found us real.   That if anything is the power of showing our film to a live audience, (as opposed to a remote, on line, disconnected viewer) – it makes our lives more real, more accepting of our reality without Josh.
Dr Kate Granger "My doctors wanted to treat me with about eight-ten cycles of chemo'. I put up with five then told them to get lost and went back to work."
When the note giver does speak she introduces herself as Dr Kate Granger, an Elderly Medicine Registrar and the author of two books – The Other Side and The Bright Side.    She then tells us that 14 months ago she was diagnosed with a rare and aggressive sarcoma which will end her life before too long.   Now that she is both patient and doctor, Granger explains that she wants to help health care workers to better understand what being a patient is really like, and how a doctor’s behaviour, no matter how small or seemingly insignificant, can impact massively on the people they look after.    Her books recount her personal battle with control, how and when to relinquish it, but Granger herself was an inspiration with her total openness about dying and what it means to her.
I must have learnt something about openness when it comes to death as my question to her, ‘how long have you got?’ comes quite easily.     The answer was in effect – anytime soon – the average life expectancy of people with this diagnosis is 14 months.   Most would put Granger’s composure in the face of such tragic circumstance, as manifest of an extraordinary well of individual courage and positive thinking.    But its also true, and as she remarked, it’s those family and friends close to her that are more distressed than she.    I can understand this.    The perceived nightmare is far worse than the actual nightmare.     If the doctors she wants to enlightened are death denying (possibly seeing a patients death as their own personal failure), we too know about a grief denying complex that seems to affect so many of our own acquaintances.
Dying Matters exists because of these denials.  “Let’s talk about it†the website almost screams.   But it feels we have a long way to go before we can have our own “Day of the Dead†here in Britain.    If we don’t go to next years event with Dying Matters, perhaps you’d like to join us for an evening of margueritas, encilladas, and possibly a sombero laden guitarist crooning ‘guantanamera†here in Chalford Hill.
JIMMY
8 Nov 2012
Dying Matters have now put Beyond Goodbye on their front page along with a nice article about Jane’s contribution – check it out here. Â Â They’ve called it ‘Turning Grief into Positive Action’
Last month Jane was interviewed by BBC Radio Gloucestershire as part of a radio series examining what happens to somebody’s social media presence, after they die.    You can listen to the full interview here.
And listen out for the song “Joshua’s tree” written and performed by Jessica Carmody Nathan
I’ve  been interviewed by BBC Radio Gloucestershire as part of a radio series examining what happens to somebody’s social media presence, after they die?
The feature includes interviews with social media experts, and explores the reasons behind keeping someone’s memory alive on-line, after death.
In the case of ‘Beyond Goodbye’, I speak about why we wanted to create an on-line tribute to Josh, and how the website has become a living memorial.
The series will be aired in mid September on BBC Radio Gloucestershire, and hopes to spread awareness and understanding about bereavement and the power of social media.
Here’s a great review from our friend Jack Nathan about Jane and Joes talk at the festival of death for the living …………………………………………….
Attending the ‘Everything you always wanted to know about funerals (but were afraid to ask)’ session was always going to be painful. I went in dread and ‘excited’ anticipation as I knew I was going to hear from two panel members, Jane (mother) and Joe (brother), talking about surviving the profound and still raw grief of losing Josh: a young man lost to an arbitrary event, euphemistically labelled, ‘a road traffic accident’, thousands of miles from home, whilst on a ‘trip of his lifetime’ in Vietnam. Continue reading →
