Farewell Magazine is a quarterly life style mag (death style mag?) recently published and available in all good news agents and on line. The Winter 2013 edition includes an article about Beyond Goodbye. Is this an indication of how far we have come in the business of ‘coming to terms’ with Josh’s death? Soon after he died and just as we had just as we had published Jimmy’s book Released, we were approached by a number of ‘press outlets’ asking to write up our story. They weren’t all tacky ‘women’s own’ type mags but even the more dignified requests were something we really couldn’t be bothered with. Now, nearly three years on, we have become more comfortable with the publicity that has come with the films we have made and the articles we ourselves have written. In a way, this site Beyond Goodbye, has become a bit more than a memorial to one man, it seems by all accounts to have gathered momentum as an example of a new way of dealing with the aftermath of tragedy. So while each and every day we still wake up to the terrible news that Josh is dead, our work in being more public in our grief has brought certain compensations. If it has been difficult for some of our friends to stay alongside us on this journey, there are many out there in the wider world, that know what we are going through and in a way we have become part of a wider community of the bereaved.
Before Josh died, and before we became involved with charities like The Compassionate Friends and Dying Matters, we wouldn’t have given a moments thought to the idea of picking up a mag like “Farewell’ or to peruse it’s contents in search of advice about how best to arrange a funeral. ‘Excuse me that’s someone else’s story’, I would have said, ‘nothing to do with me.’ Life after all is about living. Most of us have an inbuilt and necessary fear of death which makes the subject understandably hard to talk about – and those that do are seen as.. well.. morbid. But now we live with death every day. Joshua’s life and his death are our minute by minute companions. And it’s not morbid. Despite the hurt, the anguish and constant trawl for some relief, life in a strange way, now has more meaning and more purpose.
So death is now our story and although it still feels odd that someone would want to write it up in a glossy mag, we are I think OK with that. The article has some familiar pictures of Josh and uses Fred Chance’s brilliant photo of Matara as the backdrop to the front page. It covers our reasons for doing the funeral our way as well as nice words about Beyond Goodbye, ‘a collection of online ideas that remember Josh … Taken together, its a project of real work and a challenge to traditional introverted expressions of grief and mourning.’
To read the full article click here to download – Farewell Winter 2013 or go to your local WHSmiths and cough up £3.95. The article is on Page 41
‘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.”
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.’
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.’
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.