grief

THE GOOD GRIEF PROJECT – new trailer released!

Posted by jimma

THE GOOD GRIEF PROJECT has now entered a new phase.   As you will know Jane and I travelled to the USA and Mexico last year in order to meet with and film other bereaved parents as part of an on going project to collect and publish stories of how people grieve for a child.    Seven of these stories now form the substance of our rough cut for a 90 minute documentary which we are hoping to release this coming September along with brand new websites, both for Good Grief and Beyond Goodbye.

And to help promote the project and to keep you all in the loop we have recently completed a short 6 minute trail for the documentary – check it out above.    We hope you like it; we hope you are energised by it and we hope you are as excited about it as we are.   This is our calling card for THE GOOD GRIEF PROJECT and our biggest hope is that it will help us to generate much more publicity and … more funding.

Read more about our plans to develop the project – news of a new website, a new member of the project’s team and how you can get involved here:  Sharing our stories – a new trailer for the documentary

The RING THEORY of ‘kvetching’ or ‘How Not To Say The Wrong Thing’

Posted by jimma

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Do you know what ‘Kvetching’ is?   No, nor did I till I found it referred to in article written by Susan Silk a clinical psychologist and Barry Goldman a family mediator.  “Kvetching”  is an old Yiddish phrase meaning to moan, grumble or complain continuously about something.    Silk and Goldman have used the idea to explain how not to say the wrong thing to anyone who has been traumatised by those who are close to them.

The concept is simple – those who have been traumatised can kvetch all they like to who ever they like.  Those around them can comfort and be there for them but hold their tongue on any kind of kvetching – unless it’s to some one who is further away from the trauma.

Agreed this is not a very nice way to describe someone who like us is grieving but I think you get the point and I have adapted what they have called the ‘ring theory of kvetching’ to our situation – many bereaved parents and siblings will have had experience of friends and family unwittingly and totally ballsing up by talking about their own experience of grief in the mistaken belief that that will somehow comfort us.   I know that soon after Josh died a distant relative needed to tell me how horrified and upset he had been after a cousin had been murdered some twenty years ago.   He meant well but I was left wondering what the hell I was supposed to do with this information.   Was I supposed to comfort him, empathise with him, put my arms around him, when every bone and fibre of my body was still reeling from the death my son.  Where was I going to get the energy to respond to this story sympathetically or even angrily?   I said nothing but the subsequent silence between us and the simmering hurt and resentment lasted for a long time.   I know my relative meant well but had fallen prey to a common misconception about the needs of the recently bereaved.

Ring Theory 3(flat)

Silk and Goldman came up with a simple technique to help people avoid this mistake.    The above diagram describes our relationship to others should we find ourselves in the unenviable position of suffering the death of a son or daughter – always a hugely traumatic event.   Their advice though is directed towards the social circles around us.   Ands what they suggest for friends and relatives of the bereaved is this ..

Draw a circle. In it, put the name of the person at the center of the current trauma. In our case that would be Jane and myself.  Now draw a larger circle around the first one.  In that ring put the name of the person or persons next closest to the trauma (i.e Josh’s brother and sister Joe and Rosa).   Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order.

And here  are the rules.

The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?”and tell everyone to “piss off” (even if they don’t really mean it) That’s the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings.

When you are talking to a person in a ring smaller than yours, someone closer to the center of the trauma, the goal is to help. Listening is often more helpful than talking. But if you’re going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” Don’t say, “You should hear what happened to me” or “Here’s what I would do if I were you.” And never ever say anything that begins with  “at least … “.  “At least they had a good life…”,  “At least you have other children….”, “At least s/he isn’t in pain anymore …”

And if you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring, someone who is further away from the trauma than you are.

So its COMFORT IN and DUMP OUT!

Complaining or whinging  to someone in a smaller ring than yours doesn’t do either of you any good.   On the other hand, once you’ve comforted a traumatise person you may well find the need yourself for some TLC, so go to someone in the ring outside yours.   And don’t worry. You’ll get your turn in the center ring. You can count on that.

Granny’s funeral – “un oeufs an oeuf”

Posted by jimma

“What’s the best thing that women have compared to men?”

“Nipples that work!”

My mum Emily had a  weird and wacky sense of humour and my brother Ned was first up at her funeral to reveal it.  Within minutes of starting his eulogy he had recounted an early joke of Emily’s that set the tone for an  evening of unexpected delights as we shared memories of our wonderful mother and grandmother.

Emily Norah Edmonds 20th April 1917 – 26th November 2015

Emily died while Jane and I were still on our travels in Central America.  We got the news while stuck on the border between Honduras and El Salvador.  The coach we were on was being searched for drugs and with an unexpected internet connection, Jane received a message that our daughter Rosa had tried to contact us.  We phoned her straight back.   Good or bad, significant news  always seems to be associated in my mind with a still image; like a photograph it remains imprinted on my memory bank yet often has absolutely nothing to do with the news itself.   With tears trickling down, I listened to Rosa’s account of her Granny’s last moments, while out of the side of the coach I watched a truck driver laboriously unpack the tarpaulin from his load in readiness for a customs inspection.  Like an image on a book cover this is what I see when I recall the news of my mothers death.   In the scheme of things two random events caught in my imagination – a man bent over struggling with the weight of his labours and my mother’s lifeless form in her bed at the residential home she had lived in for the past three years.    But this scene was all I had until we returned home a month later and I could visit her in the funeral parlour.    At which point the fact of her death became real … really real.    When we heard the news of Joshua’s death an image closely associated with that moment also has me looking out of a window and two police officers walk up our garden path.   It’s as if these images get stuck in time and the work of grief is to gradually erase them to reveal a truth that we can at last assimilate.    In any case I am a firm believer of viewing the corpse, not just as a way of helping us to recognise the unassailable fact that our loved one has died,  but as a first step to rebuilding and continuing our relationship with them.

7th January 2016 – we manoeuvre Emily’s casket prior to bearing her into the funeral
Respect for the dead

Relationships seemed to figure high in our speeches, eulogies and conversations at Emilys funeral – or celebration of life that many would prefer to call it. Ned and myself both referred to the idea that our relationship with Mum was “kind of complicated” – in that the way we were brought up, sent away to boarding school, and discovered new things about our past only after Dad had died.  These and other testimonies all started to build a picture not just of who Emily was but what she meant to all and each of us differently.

For grandson Joe it was childhood visits to their house in Sussex  where he discovered  “that old wooden box of brick dominoes that lived in the cellar.  Hours were spent constructing a domino rally down the winding stairs and through into the living room

Memories of signatured and scribbled words from generations past on wooden domino blocks… Wow, playing at Granny’s really rocks!

Joe’s most terrible rhyming puns would resonate for many; Emily’s unlikely love of snooker on the telly elicited this

Dozing off in the armchair was sheer heaven, We’d never quite stay awake for the big break 147.

For grandson Jonny it was Emily’s warmth:  “a warmth of welcoming visitors and those she loved dearly.  The kettle was put on, the biscuit tin was stocked, the table was set – even the breakfast table.  If you were a vegetarian, she found it slightly amusing and somewhat confusing – “not even some black pudding, Jonny?” 

And he recalled another of Emily’s favourite jokes – one that we have all heard over and over again and will continue to enjoy, not for any intrinsic hilarity in the joke, merely because it is and always will be .. sooo Emily –

“Why does a frenchman only have one egg for breakfast?”  “Because un oeuf’s an oeuf!”  

Granddaughter Claire read from a letter her granny had sent in which she made reference to the Australians seeming inability to laugh a themselves – unlike ‘us limeys’.  Written in 2000 her letter reveals the first signs of the dementia that would take hold of her in the years to come.  She had just moved to be closer to us in Chalford and writes “space is limited and I only have one bed I can shove things under.  The fridge is so small beers and cokes have to go under the dresser but having packed everything away I have difficulty remembering where I put things…”

Jane had been looking for photographs of Emily and came across a postcard that Josh had written to his gran from Vietnam.  “Hi Gran, Josh here!” (we always asked people to announce themselves at the beginning of a letter or card)  “travelling is one of the most amazing things ever” he continued “it is tough being on my own but I am learning so much and meeting loads of people all the time”     The postcard was unsent and had come back with the rest of Josh’s belongings; it now reminded us in the most poignant way how important Emily was to all her grandchildren.

Emily’s Grandchildren, Nikki, Claire, Jonny, Ben, Joe and Rosa
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Film showing at Emily’s funeral
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Eulogy from grandson Jonny

All these contributions speak to a relationship as much as they do to the person.  Joe’s experience of playing at his Granny’s house, Jonny’s enticement for us all to remember and share in the joke, Jane’s reading of Josh’s desire to connect with his Granny and tell her his news and Claire’s precious airmail.

Along with film clips, photographs on the walls and on the screen, we had built a small ‘set’ – a replica of Emily’s front room with her chair, her knitting basket, todays Times crossword, a bowl of humbugs, all her actual stuff but triggers to memories and the life that once was.   Forget multi media, this was ‘interactive’ in the best possible way as people took turns to sit in her chair or add their own memories – a scrabble bar with the word ‘twitten’ – meaning ‘alleyway’ or path between two hedges and specific to our home county of Sussex (and a good score in scrabble apparently as it uses all seven letters).   Emily was a wizz at the Times crossword and would normally finish it by nightfall – today’s remains only partially completed!

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So in a very real way, mourners for Emily were able to recall not only their memories of the person, but to actively engage with the space in which she lived – a truly visceral experience to be remembered in its own right and carried with us as part of our on going connection to her.  But it was also fun, really good fun which had Josephine (at just two and a bit, our youngest mourner) unravelling a ball of wool as she wandered around the guests and plenty of laughs as we watch clips from the film I had made in 2007 which featured Emil and her friend Yvonne discussing life after death and getting stuck in the lift.

Another departure from the norm (though this only became apparent to us afterwards) were the volunteers of the bearers for Emilys casket – we had the men carry her in and the women carry her out, something many remarked they had never seen before.   And for Jane in particular a special moment; one she would not have been comfortable with had she not been so up close and personal to death these last few years. Coming from a family where the D word was never mentioned, helping to carry Emily’s casket was for her a kind of rite of passage - she felt that there was something so primitive and powerful about this part of Emily’s journey being in the hands of women.

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My beautiful mother then spent the night in our living room, an honour that meant so much for us.  Our home is closest to where Emily lived for the last 15 years and it only seemed right and proper that we should host her one more time.

Again to have a dead body in your living room feels a bit untoward in this day and age – I don’t know why given what an ancient tradition this is.   In days past you might even have invited a photographer to make an image of the dead person such was the lack of squeamishness about these things.   You certainly wouldn’t have balked at having an open coffin.    For us it meant a wee bit of alone time in which we could lift the lid and say one more ‘goodbye’, to acknowledge that in the stillness and the coldness of her frame,  yes she really is gone but also in that very stillness, in her deadness our relationship though changed could still be very much alive .. my mama, my mama, my mama …

I think we had got to know my mum particularly well in the last chapters of her life (certainly in a completely different way from when we were children)  including the years in which the dementia progressed, years in which even while her memory and her capacity dimmed, her straight talking, her self effacement and her humour always shone through –

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

Emily may well have long fallen out of love with life, but her love for us never died.   If only we could have honoured her dying wish of putting her in the oven with as much flair and bounce as we’d managed at the celebration of her life though how we could have done that does stretch the imagination.

The service at the crematorium the next day was a more solemn affair – but by having two ceremonies we bucked a certain trend articulated by Su Chard the celebrant who did for both Josh and Emily – importantly we had separated two necessary (but normally conflated) rituals attendant at someones death: the funeral and the disposal of the body.

Thanks for reading

Jimmy

January 2016

This post appears both here on BEYOND GOODBYE and on our blog for The Good Grief Project

(for Su’s ideas on the nature of contemporary funerals see our film Beyond Goodbye )

and here is a short (i.e. edited) conversation between Emily and Jane that should amuse … recorded on her phone in Steppes, the residential care home she lived in for three years.

We’d like to thank Harriet Lewis for the wonderful Paella that rounded off the evening and James Kriszyk for some great photos of the day.

EXPLORING GRIEF WITH PHOTOGRAPHY

Posted by jimma

The following is our report on a photography workshop Jane and I ran at the TCF National Gathering earlier this year – apologies if this appears a little late but life work and other things do tend sometimes to take over from our tasks of keeping you informed of all the things that have happened since Josh died.    In any case time for us doesn’t really feel like a series of moments that gradually disappear into the ether,  or off the bottom of a blogroll, so we hope that this account will be as relevant to you in a years time as it does now.

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Saturday 11th October  2014 …   it’s the annual Gathering of The Compassionate Friends and Jane and I have an opportunity to share our joint skills in photography and therapy.  We are running a photography workshop for bereaved parents and siblings – EXPLORING GRIEF WITH PHOTOGRAPHY.    Our two disciplines seem to gell together seemlessly and the first part of the course is going well – the participants have split into groups and and are sharing the photos they have brought along.   We have a good turnout – two 90 minute sessions both completely full – most with very little practical experience of making photographs but all with a huge amount of stories and memories to share.   The room is buzzing with emotion.   Both therapy and photography are ways in which to seek beyond the surface layers and discover hidden emotions.    And while photography can have a more tangible result they are both very much processes in which everyday realities can be tested and revealed anew.  At least this was the approach we hoped to explore in the new photography course we have devised and for which this is its first outing.

The Compassionate Friends is a charity we have now become quite closely involved in and attached to. TCF is important to us, not just because of the video we produced for them (SAY THEIR NAME) but because it truly is a peer to peer network run by and for bereaved parents.   Not only do we share our grief (it makes life so much easier when we do) we can also share our skills and for us this represented a very special opportunity to contribute something of our own to a community that had, I suspect, not given much thought to the potential of photography as a therapeutic tool, especially for the bereaved.

So how do we and how can we use photographs to help us as we grieve?       Both the photos that we already have of our child and the ones we intend still to take.    We asked everyone who signed up to the sessions to bring along at least three photos of their child, pictures that have a particular resonance or evoke a special memory.   Further into the session we will be asking them to choose just the one picture in order to ‘reframe’ it in a way that will bring it more into the present.   Our purpose here is to experiment with ways in which we can keeping an on going relationship with our child by employing one of memory’s most valuable assistants – the photographic image.

In preparing the course, I began by looking for some good examples of what others had done in this area.  As Josh’s sister Rosa has pointed out in her article (Making it Real – Death and Photography)  every photo we take will outlive its subject and as such has enormous potential to transcend  that final moment between life and death, a fact well recognised by artists and photographers ever since the medium was discovered 200 years ago.   But by  googling  a combinations of various words; GRIEF, PHOTOGRAPHY, DEATH, BEREAVEMENT etc, I found little that spoke to my own experience of life since Josh died.      Beautiful photographs as they are, mostly they seem to fall into high art or reportage, neither of which seem to be of much use to anyone looking to express their own very personal feelings in the days months and years following the death of a child.

Nico Nordström
photo credit Nico Nordström 2010
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Dmitri Baltermants – Crimea 1942
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Dan Chung – China 2008

Typical would be this photo of grieving parents following an earthquake in China.   Although as a press photo it has the potential for a sort of anonymous association for the viewer (we can feel their pain)  it does little, I suspect, to help the mum and dad who have just lost their daughter.  Why?  Well I think its because they haven’t been involved in the real work of taking the photograph.  Did they know the photograph was being taken or did they pose suitably grief stricken in the rubble, their daughters image conveniently arranged so that the world can see her in full view.  Whichever,  this is an image of tragedy for public consumption and feeds a very common place idea of what grief should look like but, buried as it is in the historicity of the moment it can never convey what grief really feels like as one of life’s longest lasting experiences.

A little closer to home (in the sense of a personalised photography) I found this remarkable website NILMDTS – Now I Lay Me Down to Sleep – a sort of photo agency that will record for you a moment with your child who has died at birth.    This is a free professional service and is in the tradition of post-mortem very popular in the States at the  end of the 19th century, a time when child death in the family was commonplace, though we can assume no less traumatising..

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19th century post-mortem photograph
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Victorian post-mortem photograph
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now i lay myself down to sleep – 21st century

Now as then these  photographs carry a huge emotional charge both for the bereaved families and for us strangers looking on.  Unlike a press photograph and in common with all portraits they have demanded the active participation of the sitters.   Mother has taken her dead baby in her arms and posed specifically for the camera.   She is performing a drama with the shortest of stories but one which will have lasting impact and as such has the potential for huge therapeutic effect.  The moment is both real physically and emotionally and she is in effect taking the first step in a life’s work of continuing her bond with her child.  This is a lasting image that has captured a hugely significant moment and one in which she can return to time and  again as she remembers and try to construct what (or who) might have been.  But again, as artefact, these post-mortem pictures are and can only be,  locked into the past, even while they generate very current as well as very healing memories and emotions.

It was with these thoughts in mind, that we began our workshops  with an invitation to explore  ways in which we can use photography to generate a continually evolving set of stories and impressions following the death our child.  We had each of us brought favorite photos and were now explaining the  stories behind them and the memories they evoked. In the small groups we had formed words spilled out and across the room in a veritable hubbub, a cacophony even of voices all (and I think this is the really interesting bit) trying to describe their feelings, all trying to convey their emotions.   But at the same time the mere act of vocalising our thoughts, of telling the narrative seem to get in the way of really connecting with these photos and the child within.  In a sense words were failing us.

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photo workshop – the telling

At this point then we asked people to remain in groups but to sit quietly and merely observe their images, together and in silence.  In the hush that followed Jane used her ‘mindfulness’ techniques, encouraging us to stay in the moment however difficult the feelings, to try and lose a sense of time and to find a connection with our child that is now and something more than just memory. It was extraordinary, as the words disappeared and the emotions took over, hands felt for another to hold, an arm went around another’s shoulder,  tears began to form and frankly, I was stunned.

Photographs of course are always memories – they are always of the past; of something that has already happened.  You cannot take a photo of the future.  But while they are always of the past, they are also always in the present. And like memory their meaning or the meaning they have for us, can evolve with time, sometimes radically and overnight.  We recognised this in the photos we had brought of our children … innocent snapshots that have now become overloaded with longing and painful fantasies of what might have been.    In my book RELEASED I wrote about how an image of Josh taken as part of a series of portraits of people with their eyes closed, had now attained a kind of iconic status in the way in which we remember him – and the way in which we ‘reinvent’ him in a continually shifting process of trying to find meaning in our lives and in his death. Personally, I have found much comfort in being able to re-photograph Josh’s  image – it has taken me from the raw pain of remembering too much to a newer sense of a continued relationship with him.   No longer here and forever dead, Josh still remains a huge presence in my creative endeavour and very much part of my life.

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Josh’s business card
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So there are two aspects to this business of exploring grief with photography. There are the photos we already have of our child who is now dead.  Photos that were taken in all innocence of what the future might bring, now portals to our memories holding us close to a life that once was, both ours and theirs.  And there the images that we can now make – post tragedy – of the lives we now inhabit, both ours and theirs (do they not live on within us?).

For the second part of our workshop people divided into pairs and together attempted to create a photograph that reflected some of these concerns.   In a way what we were trying to do is to weld together the past and the present – the past with all its longings and the present full of our current desires – and in so doing rebuild our sense of a future.  As all bereaved parents will know, when your child dies, you are immediately thrown into a world in which the future has very little meaning.  But in this act of re photographing our child’s image we began to see some real therapeutic possibilities in the way we can continue our relationship with her/him with less pain.  With the photographs we now made we could forgo the ‘what if’s’ in favour of the ‘might be’s’.   We might even imagine a time when we can look upon their face and smile again and know there are more photos to come many of which we haven’t even dreamed about – yet.

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photo workshop – the making
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photo workshop – the showing

24 people attended our workshops and you can see some of the resulting photographs by clicking on the image below.   Some of the photos remain private so we are only publishing those for which we have permission.

EXPLORE THE RESULTS

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Some of the thoughts and feedback about the sessions …

“inspirational – I have been so sad that we have no new photographs of (our child) and now I feel I can put all our pictures into a new context”

” …painful, powerful, beautiful meaningful and extremely well run.   A perfect combination of professionalism, creativity and empathy”

“looking at my picture of (my child) was so hard … I have always thought I was so totally rubbish at photography and not really interested in it but it has inspired me to do more in the future”

“but maybe the tears are necessary and maybe they feed the creative process ..”

“You have shown us a beautiful & really unique way  to remember our very precious children ….. I thought I would get very upset seeing (my child) on the screen …. but in fact because it was so special, it was actually comforting”

“such a beautiful way to continue our bonds and to make new ‘memories’ with (my child).   Jane and Jimmy, you handled our feelings so sensitively and I feel uplifted”

Jane and I feel very encouraged by this and will be offering a more developed version of EXPLORING GRIEF WITH PHOTOGRAPHY in the future.   In the TCF workshops we were concentrating on re-photographing an already existing image but there so many more ways of photographing our grief.   We also realise that for some  the image of their child still holds too many painful reminders or that they might want to focus on a more abstract sense of their grief.   Grief afterall is such a complex range of emotions that finding words to describe them often seems to result in cliche or just very ordinary and nothing like what we are truly experiencing.

And this is where making new photographs can help to play a part. We can learn to express our thoughts and feelings in a language that is not so literally tied-bound.  By finding the visual metaphors that are in a way unique to us and that express our grief, ours and ours alone, we can interpret our feelings and our experiences  in our own way.  In a way this is our route to honesty, something others are bound to recognise.    We may also find that despite the very solidity of a photograph (this did actually happen – this person did actually exist) the language of photography is very fluid, that photos in themselves hold no particular meaning outside of the way they are viewed. But isn’t that a bit like grief anyway – a constant slipping and sliding of feelings and emotions around a central fact – our child has died.

Thanks for reading

Jimmy

December 2014

If you want to know more about our work or would like us to create a course for you please use the CONTACT FORM on this website

Look out for my next photographic series

Another Place Beyond Time – coming soon

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LINKS

The Compassionate Friends – WEBSITE

Now I Lay Myself Down to Sleep – NILMDTS

Continuing Bonds – on BEYOND GOODBYE

Rosa’s essay - Making it Real – Death and Photography

Jimmy’s book – RELEASED

DIAS DE MEURTOS

Posted by jimma

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By coincidence while Jane was helping to launch the Dying Matters BEING THERE  campaign in London last month (2nd November 2014) our older son Joe was in Mexico visiting Hollie, one of Josh’s best friends.      The Dying Matters event was the focus of their annual Day of the Dead celebrations and guess what, Joe and Hollie were remembering Josh at the real deal in Oaxaca, birthplace of Las Dias de Muertos.    Here is his account of their day …

JOEMEX2238Experiencing Dias de Muertos – Oaxaca, Mexico 

We experienced Dias de Muertos here in Mexico in Oaxaca City. Each year Mexicans celebrate the dead leading up to 2nd November (Dias de Muertos) by creating colourful altars for their loved ones that have passed, dressing up in death related costumes and face paints, drinking and eating and holding street parties. Within Mexican tradition, the 2nd of November is kept for the dead to return to this world and share in the offerings given to them.

Having lost a brother and a best friend, Hollie and I  wanted to honour our Josh this past weekend and ensure that his presence and soul was celebrated. We created a colourful mobile made of traditional Mexican tin, that carried pictures of Josh on star shaped card and little skeleton figurines and a sacred tin shaped heart. We visited a candle lit vigil for the dead in a cemetery just outside of Oaxaca Centro. The scene was magical. Night had fallen but the cemetery was lit up with candles, bright marigold flowers and the sound of music from people playing instruments and singing beside the graves of their lost ones.

JOEMEX2249We found a suitable tree that Josh could now call his own and hung his mobile to a branch. We scattered Josh’s ashes at the base of the tree and shared a small bottle of tequilla with Josh whilst sitting with him.

Although in the UK, it is not un-common to see relatives and friends visit  a cemetery and to hold time with a lost loved one, this experience felt very different. A more shared experience and less private, where visitors walked in between the dead and were invited to learn more about them. The dead felt more alive due to the decoration of their graves and how families were sitting, eating, drinking or even singing or having a smoke with them.

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We shared our love of Joshua with a mother and a wonderful young child who became instantly interested in Joshua’s memorial mobile. He asked questions about who Joshua was to us and it was nice for us to introduce him to Joshua. He was so taken with the mobile that Hollie simply had to give him the sacred tin heart for keeps! He was chuffed to bits.

Here in Mexico, people’s relationship with death seems very honest and open. The dead are not forgotten. They are celebrated and seen as still part of this world.

Josh’s mobile still hangs in the cemetery and now he has two trees in this world he can call his own.

Joe

November 2014

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Hollie downs a tequila in memory of Josh
Jane and Rosa at Dying Matters copy
Jane with Josh’s sister Rosa at Dying Matters


LINKS

to view more photos from Joe’s trip to Mexico click here

Dying Matters : http://www.dyingmatters.org/

 

BEING THERE – what to do or say when someone has been bereaved

Posted by jimma
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Almost half of Britons (47%) say they would feel uncomfortable talking to someone who has been recently bereaved, and many bereaved people have experienced negative reactions to their grief, including people avoiding them and the loss of friendships, according to a new study released by the Dying Matters Coalition.

This is a finding of a special report commissioned by Dying Matters to coincide with the launch of a new campaign designed to support people with what to say and do after a friend or family member has been bereaved. The BEING THERE initiative comes at a particularly poignant time for many bereaved families – this is the lead up to Christmas, a time when, as in our case, the absence of a loved one is more keenly felt. BT1BEING THERE is addressed to people who like many of our friends have naturally moved on their lives and away from the intense pain that we feel. This is normal but it is also very hurtful – the affect upon the bereaved is to suffer not just one loss but many … with death being such a taboo subject in our culture, grief too becomes a feared emotion and all too often our friends and family shy away from a state of mind they see as uncomfortable, disruptive and avoidable.

So the BEING THERE campaign is a really good starting point for all those wanting to know what to say and do as well as what not to say when a friend or family member has been bereaved.   Here is a link to the Dying Matters press release :

Brits struggle to support bereaved people

Dying Matters is a coalition of a number of organisations from across the country set up to promote public awareness of dying, death and bereavement.   The Coalition’s Mission is to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. This, they say,  will involve a fundamental change in society in which dying, death and bereavement will be seen and accepted as the natural part of everybody’s life cycle.

Josh_BM_042Josh’s mum Jane is on their advisory committee and contributed to the launch of BEING THERE  with a number of radio interviews across the UK including BBC Radio 5 LIve, Radio Scotland, Gloucestershire and London and the West Midlands .   This is what she had to say about her conversations around Josh… “We discovered that whenever we talked about our son Josh to friends and family there were awkward silences and people just didn’t know what to say or do for the best or even avoided us altogether. The first Christmas after Josh’s death was particularly upsetting, especially when we received Christmas cards that didn’t even acknowledge his death. However, talking about our loss, remembering Josh’s life and being allowed to say his name really helped us, as did the kindness and support from those people who went the extra mile to be there for us.”

You can download Dying Matters’ ‘Being There’ leaflet free here : Download ‘Being There’ or order hard copies here: Order ‘Being There’

Thanks for reading

Jimmy

December 2014

Click on the image below to hear Jane’s interview with Anna King of BBC Radio Gloucestershire

Links

ComRes: download the full Dying Matters report on British People’s Attitude to Bereavement

The Compassionate Friends, the charity which supports parents following the death of a child of any age, has launched a guide to getting through Christmas when someone so important is missing: Coping with Christmas

Annie Broadbent is the author of new book ‘We Need to Talk About Grief’, which gives first-hand advice on supporting someone who is grieving: visit Annie’s website

Kate Ibbeson has written a blog about feeling unsupported at Christmas following the deaths of her parents: Read Kate’s blog

Cruse Bereavement Care offers a helpline for bereaved people all year round, including throughout the festive season: Cruse Bereavement Care

Silverline provides information, friendship and advice to older people who may feel alone; the free helpline is open throughout Christmas: Silverline

 

World Remembrance Day for Road Traffic Victims

Posted by jimma

 

 

16TH NOVEMBER 2014

WDR
 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 : 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”

AND HERE’S A LINK TO World Remembrance Day for Road Traffic Victims

Thanks for reading

Jimmy

November 2014

How to Help a Grieving Friend: 11 Things to Do When You’re Not Sure What to Do

Posted by jimma

Every now and again, we see or read  things on the internet that express things we’d like to say, but so much better.   Such is this piece.  It’s  by Megan Devine, a mental health therapist who’s partner died five years ago.   So if you’ve ever been flummoxed by how to deal with someone’s grief, caught short on what to say to them, or are just unsure of how to “be'” with them, then here’s a few tips.     I hope it doesn’t sound to trite, but if we ourselves had had some grounding in these ideas in the months (and now years) since Josh died, then maybe we too would have had more compassion for those around us who wanted to help but didn’t know how.    (Jimmy September 2014)

The article first appeared in the Huffington Post in November 2013

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Megan Devine

How to Help a Grieving Friend

I’ve been a therapist for more than 10 years. I worked in social services for the decade before that. I knew grief. I knew how to handle it in myself, and how to attend to it in others. When my partner drowned on a sunny day in 2009, I learned there was a lot more to grief than I’d known.

Many people truly want to help a friend or family member who is experiencing a severe loss. Words often fail us at times like these, leaving us stammering for the right thing to say. Some people are so afraid to say or do the wrong thing, they choose to do nothing at all. Doing nothing at all is certainly an option, but it’s not often a good one.

While there is no one perfect way to respond or to support someone you care about, here are some good ground rules.

#1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend’s grief. This may seem like a strange thing to say. So many of the suggestions, advice and “help” given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.

#2 Stay present and state the truth.
It’s tempting to make statements about the past or the future when your friend’s present life holds so much pain. You cannot know what the future will be, for yourself or your friend — it may or may not be better “later.” That your friend’s life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.

It’s also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend’s loved one “finished their work here,” or that they are in a “better place.” These future-based, omniscient, generalized platitudes aren’t helpful. Stick with the truth: this hurts. I love you. I’m here.

#3 Do not try to fix the unfixable.
Your friend’s loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.

#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.

#5 This is not about you.
Being with someone in pain is not easy. You will have things come up — stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don’t take it personally, and please don’t take it out on them. Please find your own people to lean on at this time — it’s important that you be supported while you support your friend. When in doubt, refer to #1.

#6 Anticipate, don’t ask.
Do not say “Call me if you need anything,” because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: “I will be there at 4 p.m. on Thursday to bring your recycling to the curb,” or “I will stop by each morning on my way to work and give the dog a quick walk.” Be reliable.

#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of “normal” life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways — these things are tangible evidence of love.

Please try not to do anything that is irreversible — like doing laundry or cleaning up the house — unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I’m going here? Tiny little normal things become precious. Ask first.

#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending — things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend’s lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.

#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person — the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.

#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,”She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life.” If someone asks you about your friend a little further down the road, you might say things like, “Grief never really stops. It is something you carry with you in different ways.”

#11 Love.
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend’s life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts.

Megan Devine is the author of Everything is Not Okay: an audio program for grief. She is a licensed clinical counselor, writer and grief advocate. You can find her at www.refugeingrief.com. Join her on facebook at www.facebook.com/refugeingrief

GRIEF IS NOT BROKEN

Posted by jimma

This post is a  bit of a departure for us – we are reproducing in full a article I found on Huffington Post.     Something we are not accustomed to doing but to my mind it is so good, I couldn’t resist.   Written in August 2014 Elea Acheson puts into the most perceptive words, a common dilemma for many grieving parents – to speak about your dead child with a stranger or to keep her/his existence hidden.      As she explores this situation (the ‘so how many children do you have?’ scenario) Acheson seems to blow apart many preconceptions (that even I had) about what it means to grieve for the death of a child.     Her son’s death didn’t break her, she says.  No she never felt broken.  But we talk of broken hearts all the time don’t we?   And instead of being consumed with grief, she’s overflowing with love… and , wait for it, she’s grown a ‘grief bone’….   a weirdly wonderful metaphor for the changed life she now leads.    (Jimmy  August 2014)

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The deliveryman stood in front of me, cheerful because it was his last drop-off before the weekend. His stream of thoughts rambled out, as every passing second made the festivities of the coming holiday grow closer. His children were planning a special treat for their mom for Mother’s Day.

His excitement was contagious. Parents love to share stories about their children, and I am no exception.

But I was faced with a recurring dilemma. Should I tell this stranger about my son, Vasu? Or should I keep my son’s existence hidden?

Being the mother of a dead child is a daily obstacle course of frustrations. Oh, sure, I get the meltdowns, or the oddball week of short tempers and crazy talk. But those are infrequent compared to the daily conflict between what I want to say about my boy and what most people, including you reading this now, are capable of hearing.

I smiled at the man and asked a few questions. But my internal cogs were already spinning, and that little inner voice shouted the usual warnings. Don’t do it, Elea. Don’t go there. He will disappoint you.

Almost everyone does, perhaps even you someday will disappoint me. It’s not your fault. My grief makes it easy to be hurt by things I can’t do anything about. Grief makes me helpless and defensive. I can sense your fear of what I am, and it can feel as if you wished my son’s death didn’t exist. It’s in your face. It’s in your body language. It’s in the way you can slam the conversation shut with few, if any, actual words. And then I must sit in silence, because my existence has made you uncomfortable.

You wouldn’t disappoint me if I kept my mouth shut. If I pretended that I was childless, or that I had let it all go, moved on, it would make you more comfortable. And I want you to be. I don’t want to be the elephant in the room. But my son didn’t cease to exist. He died. And he left me with all these memories of being his mother.

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I like talking about him. I smile more when I can talk about his six years of incredible life. I also like talking about death and grief.

So, while I listened to the deliveryman explain his joy of being a father, I gave in to temptation like I always do, and told him that this year Mother’s Day was also my son’s birthday. The man’s eyes lit up and he asked me how old Vasu was. I grinned bigger, nervously, because I knew what was coming. This conversation happens with almost everyone I meet, in almost exactly the same way.

“Oh,” I said, trying to shine OKAY-NESS through my eyes. “Vasu would have been 11 this year, but he died in 2009.”

I watched his eyes widen, lips purse, and his face shut as tight as a bank’s vault on a Friday afternoon. He couldn’t just walk away because that would be rude, and he couldn’t ask any more questions because… well, truthfully, what is there to say? We hardly knew each other, and I just slapped him with several of the harshest realities to human existence. Children die, we all die, life isn’t fair, and some parents spend much of their life grieving for their dead children. Kind of a conversation killer. But I am comfortably obtuse when it comes to Vasu’s life and death. It’s a doorjamb I consistently stub my toe on.

The man shifted back and forth from right foot to left. His eyes wandered, until it dawned on him how to get out of the discomfort. He told me about a friend’s cousin who died young. It was a deflection. He told a story parallel to mine so he wouldn’t have to cross over to it. It’s not really sharing. Sharing requires asking questions. Which I did… about his friend’s cousin who died young. And then he left without knowing anything about Vasu except that he would have been 11 years old.

This is not uncommon for me. I am the mother of a dead child. Most of you don’t know what to say to me. Perhaps you are afraid to reopen my wounds. You must think that my loss has broken my heart. You don’t see that my smile is hopeful. I like revisiting his life and his death, the way elephants will return to their children’s bones and lovingly caress a femur or skull. I am always looking for those people who might be curious about Vasu. But after almost five years, I haven’t figured out how to get through to you that it’s OK to ask.

You see, the truth is Vasu’s death didn’t break me. I never felt broken. Lost, yes, most definitely. I felt so lost that I didn’t know who I was anymore. I had to start my entire life over from the bits and pieces I could pull together. In the months after his death, I fled from everything I had ever known — friends, family, Vasu’s daddy. I had more reasons to follow Vasu than reasons to want to live. I had to learn how to want life again.

But my heart didn’t break. It overflowed.

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When Vasu was born, I fell in love with everything about him. But my favorite times were nursing. At first it was because my breasts were painfully engorged and every time he nursed, he drained the pressure to a reasonable ache. As we both got better at it, nursing became our face-to-face, heart-to-heart time. It was as if he was drinking love from me. After he died, my body was full of Vasu love, but he wasn’t there anymore to drain me regularly. Love festered and bulged and leaked.

Before becoming a mother, before I had Vasu, I was selfish in love. I expected it to be magical, whimsical and easy. I expected love to have the same goals, the same dreams, and the same ambition I had. Giving birth to Vasu opened my eyes to another kind of love. I won’t say unconditional love, because that doesn’t really exist. But my love for Vasu was something close to unconditional. The day Vasu was born I discovered I had a love organ that I had never used before.

Vasu’s life was hard, and at times required around-the-clock care. I could handle the sleeplessness because I had a love organ.

Whenever he slept I couldn’t stop myself from checking to see if he still breathed, because the love organ insisted I do so.

I panicked every time he caught a fever, hyper-vigilant whenever he wandered, listened to every sound he made, all because of love.

Desperate, unwieldy, crazy love.

Love got me through his diagnosis of cancer at 18-months-old. Love screamed at me to take him and run when the surgeons were preparing to cut him in half to get the tumor out. Love also calmed me and helped me hand Vasu over to the surgical team. Love softened the sounds of his screams.

Love got me through his first treatment and the years of check-ups, the health scares, his first day of kindergarten and the teachers who just didn’t understand why he was so wild. Love got me through his second treatment and held me up through the months it took for cancer to kill him.

And then he was gone, and I still had all this love bursting out of me.

When rivers flood their banks in the spring, are they broken? Grief is supposed to overflow us; that’s how it works.

Grief is not broken, and it doesn’t need fixing.

Maybe that’s why people are so scared of grief, because the word “broken” is used so often. Broken is a horrible thing. Broken is something that may mend, but will never heal. Broken will always leave scars to remind us of the pain.

The words we choose are important. The words we believe can lead us to choices that have consequences. And then we have to live with those consequences.

When Vasu was first diagnosed, I listened to the words that people used to describe my experience. They used words like “tragedy,” “unimaginable,” and “horror.” And yes, it feels like all of those. But that’s not all that it feels like. It also feels like love, because love gains strength when it is needed most. When someone you love gets in an accident, all your resentment, all your impatience, all your doubt disappears and you are left with worry, compassion and love.

Love pours out when fear creeps in.

Love is our ultimate defender.

But I wasn’t listening to love when people told me what they thought of my child’s cancer. All I could hear was fear. And I believed them. The longer I believed, the smaller fear made my world, until I was too afraid to go anywhere except the grocery store, Vasu’s preschool and the Children’s Hospital. I dragged the horror of unimaginable tragedy around with me wherever I went.

Do I blame everyone for using words of fear? No, of course not. These words are true too. But they are not the only truth.

After two failed treatments, Vasu’s cancer made me tired of believing in only the fear and pain part of grief. Tired of being sad, tired of being scared, just plain tired. I wanted something different. I wanted to witness Vasu’s death with innocent eyes.

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But once again I was bombarded by words of fear.

As Vasu was dying, people said, “What you are experiencing is the worst thing a mother could possibly go through.”

Fear, trying to crawl it’s way back into my body like a parasite.

But love gave me an out. Love let me smile and nod while secretly I visualized a hand in front of their faces so that their words would bounce back.

Vasu’s death was overwhelming. As cancer took over his body, I wanted to run away. It took too long and hurt too much, but love made me stay. Love gave me the endurance to witness his death.

I knew the moment death began. I saw it in his eyes. They grew wide as he realized that the bad pain was coming back, the pain he had told me the week before that he never wanted to feel again. It broke through his morphine haze, and then he shut himself off. It took several minutes for his body to stop, but Vasu was already gone.

Over the next 24 hours, I was compelled by love to gaze into Vasu’s face. Love needed to make sure. Love needed to know what death meant. Love needed every excuse to cry.

The day after Vasu died, I woke up and discovered I had grown a grief bone. If love is an organ that overflowed me with emotion, then grief is an extra limb that unbalanced and weighed me down.

I made a promise to myself that I would let grief in as willfully as I had let love in at his birth. I would put a hand in front of society’s judgments and expectations and I would not let the fear in.

At first, I couldn’t experience grief all at once. So my body relieved me of the burden. Chemistry took over, and for days I was euphoric. I couldn’t stop giggling and I found meaning in the tiniest of things; like a stoner seeing how perfect shoelaces are. I had orgasms in my sleep. For years, stress had stolen my orgasm and deadened my thoughts. But now my body was released from stress into the immensity of grief. I leaked tears, urine, mucus, pus and breastmilk. I was a mother engorged on unsatisfied Vasu love.

Then came the cycles of grief. People describe it as being struck by waves of pain and sadness, but to me waves are peaceful, powerful and soothing. My grief, on the other hand, came on like nausea and spewed out like vomit. Every hour I regurgitated Vasu’s last breaths, and then I shook uncontrollably afterwards with the need to save him.

And like death, grief is something that everyone must face alone. No one could say the right words that would manifest my happiness, because those words don’t exist. I didn’t want to be around people who needed me to be OK — because I wasn’t OK, and I had no clue if I would ever again be OK.

I fled from everyone, because their love wasn’t Vasu’s love. I sold everything I owned except my old blue mountain bike and some camping gear, and I bicycled the Pacific Coast Bike Route, alone. Every afternoon I sat on the shore and let grief flow out. I lived only for the moment and let the future take care of itself.

I decided to allow grief to come and go as it pleased for one year, and then I would put my past behind me.

Except that’s not how it works, is it? I wasn’t broken, so I couldn’t mend. I was changed.
When you grow a grief bone, it is there for the rest of your life.

It’s been almost five years now. Some months I am clear and purposeful, other months I am an absolute pill to be around. Grief makes everything bigger. Anger is huge, sadness is deep; joy is manic. Nothing happens small or easy for me anymore.

My grief bone made me capable of standing through the entire funeral of a friend’s child without a single tear, but when another friend got married and was living the happiest day of her life, I fled sobbing in panic.

My grief bone makes me switch from almost limitless empathy to incredibly short tempers from one moment to the next.

My grief bone can make me unhappy when people like the deliveryman that day, feel safer within their silence instead of asking about Vasu. If they would just let go of their fear of my pain, then I would be free to tell them about him. He left me with a lot of good stories.

Like the time he ran across the living room at top speed, slammed through the bathroom door where his daddy was taking a pee, and asked, “Daddy, what’s privacy?”

Or the time when he had a fever and he made me read Go Dog, Go for six hours straight. My love organ gave me the stamina of a goddamn migratory bird.

If you took the time to ask, I would tell you that the reason I can smile and laugh is because I know how to cry, and that my love for Vasu showed me how.

Follow these links to Elea Acheson here

http://eleaacheson.com/

http://www.huffingtonpost.com/elea-acheson/

https://www.facebook.com/EleadariAcheson

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