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 ofÂ Â previous painful memories. As she bore her mother’s coffin into the crematorium Jane was conscious of her nowÂ ‘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 wordÂ -Â ‘orphan’ – for a child without parents, we are yet to discover what we should call a parent whose child has died. And whileÂ 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 andÂ Josh was mentioned a number of times throughout the day. To be honest this isÂ 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 mournÂ as we mournÂ 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’sÂ funeralsÂ 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. Â 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 livingÂ – andÂ 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”Â byÂ Veronica A. Shoffstall
After a while you learn the subtle difference
Between holding a hand and chaining a soul,
And you learn that love doesnâ€™t mean leaning
And company doesnâ€™t mean security,
And you begin to learn that kisses arenâ€™t contracts
And presents arenâ€™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 tomorrowâ€™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 -Â why it took so long is anybody’s guess) Â and Pat had asked that they be scattered around a particularÂ 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 theÂ manyÂ years they lived there. But the house now has new owners Â 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 ofÂ a family patriarch. Â Â 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 appropriateÂ 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 …’ Â Â And that learning can and maybe should start at any age, best done in the act of doing, of actual participation inÂ ritual.Â For Pat and Gerry’s great grandchildren, Naomi and Louis, even while they may not recognise the full meaning of thisÂ day, hopefully they will remember the weight and the feel of their forebears ashes as no less fearful than the Â bark on the treeÂ andÂ the dirt in the ground.
Thank you for reading
Jane and JimmyÂ
For an evocative set of photographs from the day of Granny Pat’s funeral please take a look at this gallery
Jane’s mum, Josh’s Grandmother, Pat died on Monday last (30th June) peacefully and in her sleep. Â She had been admitted to hospital a few weeks ago with pneumonia and what looked like the beginnings of multiple organ failureÂ but then released as her health and prospects had clearly improved. Â Â Â Late last week though, everything seemed to shut down againÂ and she was readmitted. Â Jane joined her brother Richard by her bedside. Â Rosa also travelled up to be with her Granny (having first leftÂ Glastonbury!).Â Â Â Pat was 84. Â Â Jane reflects on the experience of Â witnessing her mother’s Â death.
After my Dad Gerry died last year, my mum seemed to be in fairly good health, until suddenly a few weeks ago she took very ill and was admitted to Ayr General Hospital near our home town of Troon in Scotland. At that time she was given a 50-50 chance of survival. It was a bit of a wake up call for us as a family but the coin landed the right way up â€“ or so we thought. Two weeks later sheÂ wasÂ back in hospital and we wereÂ informed that this time Mum will not recover, in fact she probably only had days to live.
So when I caught the earliest train I could from our home in Gloucestershire it was with the sincere hope that I would get to the hospital in Ayr in time â€“ a seven hour journey that felt like much more. Our last meeting a couple of months previously had been very difficult. My Dad Gerry had died a year ago last January and Mum had finally decided that sheâ€™d like to have his ashes at home with her so she asked me to pick them up and bring them round. But when we arrived (Gerryâ€™s remains were in one of those tall cylinder cartons especially designed for scattering) it seemed it was all too much for her to deal with and I felt I was the messenger getting the blame for daring to suggest the idea. On leaving that time there was clearly a tension between us but never for a moment did I consider this would be my last visit before she was admitted to hospital with just days left to live.
Now as I stared at the familiar countryside of the Scottish Borders gliding past, I realized that what I really wanted, was to be able to tell her that I held no blame or bad feeling for this or any of the other differences weâ€™ve had. Â She is my mum after all and maybe a little thing like what to do with Dadâ€™s ashes shouldnâ€™t get in the way of my being fully present with her in her last few days on earth. Â Dadâ€™s ashes are now at my house,Â where they still wait while we decide how we honour them and him â€¦Â Â but for the moment Iâ€™m pushing these thoughts away along with the idea that Iâ€™ll soon have another set of ashes to take responsibility for. I wasÂ going to be 59 in just over a weekÂ and there is something very strange about the possibility of a birthday without parents. For the first time in my life Iâ€™m getting a sense of being properly grown up. You might have thought that Joshâ€™s death would have propelled me into full maturity â€¦ but then his death didn’t leave me being a member of the oldest generation in our family.
My brother Richard was by Mumâ€™s bedside in her ownÂ room when I arrived at the hospital. Mum was awake but clearly quite scared and panicky.Â Â He told me she had multiple organ failure, that she was too weak for an operation to clear the fluid in her lungs and the end might be quite near. Â Â Over the four years my Dad had been in hospital weâ€™d had many conversations about his impending death and it had become quite apparent to the whole family that Mum was not at all comfortable with the thought of her own. Â Â Now as I watched my mother gasping for breathe and clearly in real distress, it became obvious that weÂ had to do something about the Â manner of her dying, if only to help ease the frightened state she seemed to be in. Â Â I was also Â unsure whether hospital was in fact now giving Mum palliative care. Â Â She was getting some pain relief but this was only being toppedÂ up as and when she became so short of breathe Â she was actually fighting for air. Â Â Was this going to be the way my mother would die? Â Â Crying out in anguish as her body foughtÂ for life? Â Together with the hospital we had agreed there would be no further medical intervention or any attempt to keep her alive, but why should she have to end her life in fear and alarm.
This was still the situation when late in the evening, we decided I would stay with mum for theÂ night and Richard exhausted by 48 hours of solid vigil, would go home to Mumâ€™s house to sleepÂ -Â a hard decision because it meant I was nowÂ on my ownÂ with Mum and her distress was mine alone to witness. Â I would admit to a sense of deja vu, as I anticipated another fight with the hospital system in order to realise for Mum a better death than she was currently likely to have. Â I’d spent years battling the NHS for better care for my Dad, and frankly I was tired, tired of constantly being a ‘difficult’ relative who only wants the best for their parent. Â As it happened half way through the night a doctor finally did appear andÂ Â hooked up a syringe driver that would give Mum a continual dose of morphine and other drugs. Â I found myself staring at this machine, watching the numbers on the gauge as the plunger made its steady and predictable journey towards zero. Â I had never been more aware of death as a process rather then as an event, the drugs wereÂ sparing mum the agony of any panic she might be experiencing, but they wereÂ also presumably creating a thick fog in her consciousnessÂ which I imagined was what she would have wanted as she passed away.
I have never watched someone die before, not my Dad, not Josh (oh, how could that be possible) and I found I was strangely calm, almost hypnotized by the rhythm of my motherâ€™s breathing which seemed to come from lower and lower down her body.Â Â The distant voices from the nurses station provided a kind of reality checkÂ Â to what felt like a strange dream. Â Â Then for awhileÂ a cleaner came and sat down beside me. Â “Just keep talking to her hen”Â sheÂ saidÂ Â “You ken she can probably hear you…”
At first light the next morning I took a break and a short stroll around the hospital grounds. I was grateful for the attention the staff had shown me throughout the night, reminding me that to be there for my Mum I also need to look after myself. I thought I knew Ayr hospital quite well (too many visits over the past few years) so was surprised to find a stone sculpture of a young girl letting go of a dove just outside the staff canteen. Â Â Maybe it was the cool of the early morning air but the stillness and the serenity of this small sculpture seem to speak volumes â€“ I was helping to let Mum go.
I had beenÂ in twoÂ minds whether I should let Rosa know that her grandmother was dying.Â Â I was aware that her granddad had died the year before and that as family we were still very much in shock following Joshâ€™s death. We were all still desperately trying to adapt to life without him and I wanted to spare her the experience of yet another loss. She was also at Glastonbury and presumably having a great time. But at the same time I could hear Rosaâ€™s voice saying â€˜no secretsâ€™ and â€˜ how come Iâ€™m always the last to knowâ€™.Â Â So I’d asked Jimmy to ring her.Â Â She was tearful and terribly upset at first. Â Then without a momentâ€™s thought Â she declared she would leave the festival and come and see her gran one last time.
It wouldnâ€™t be until the following day that Rosa would get here and in the meantime I was concerned that Patâ€™s breathing was becoming even more laboured and more erratic. Again I found myself hoping against hope that Mum could hang on for her granddaughter.Â Â A selfish thought maybe but I knew it could be a truly cathartic experience for Rosa, to witness death as an ordinary event, as a gentle passing of an older family member, not the extreme trauma of her brotherâ€™s death.
Rosa arrived late on Sunday afternoon still in her muddy Glastonbury wellies, a fact to which the nurses turned a blind eye.Â Â Once she had gotten over the first sight of her Grandma looking so poorly, so frail, so helpless with her oxygen mask on, she immediately relaxed, dried her eyes, and settled down to hold Patâ€™s hand.Â Â And I realized immediately why Rosa had come.Â Â She needed to be here, to connect.Â Â But in a way, Rosa and her youth were also the connection bridging the gap between my motherhood and my â€˜daughterhoodâ€™. Â Then again Rosaâ€™s capacity to deal very straightforwardly with what was in the room, her lightness of touch and the ease with which she could accept the reality of a soon to be death, brought another level of relief to both myself and to Richard.Â Â We spent the rest of the evening, chatting away, reminiscing, not sure if Mum could hear us, or was even aware of our voices, our laughter, but it all felt very right.Â Â Here we were three generations waiting for death to arrive, doing what people have always done. In this moment we were sitting by a whole history of deathbeds, attending to a whole history of ordinary deaths, whiling away the hours before every death that is in the right order of things. This was death without surprises and without false hope, a natural and as good as can be death, a death without trauma which might evenÂ bring some kind of equilibrium back into our lives.
Pat Harris died at 7.30 the following morning.Â Â It had been Richard’s turn to stay overnight and he called to say she was now at peace.Â Â Rosa and I returned to the hospital and were led into my mumâ€™s room, now cleared of all monitors, drip feeds, oxygen bottles and all the stuff that keeps people alive.
With the blinds drawn down, a soft orange light infused the room and in the stillness I tentively stroked my motherâ€™s hand,Â still faintly warm. I thought fleetingly that now I am an orphan. And so is Richard.Â Â A year and half ago, my Dad died in this very same hospital. We had now together twice experienced that intimacy that being with death brings.Â Â Knowing death as a mother is beyond my capacity to describe (I will, Iâ€™m sure you know, never ‘get over’ Joshâ€™s death) but knowing death in this the natural order of things is strangely life affirming and as a family I think we are stronger for it.
I’d like to thank all the staff on Station 9 at Ayr Hospital for their compassion and thoughtfulness during the six days Mum was in their care.
A short version of Jane’s film THE WAITING ROOM was the centre piece of the 8th Annual Conference on Dementia and End of Life organised by The National Council for Palliative Care and the Dying Matters Coalition and held in London on 4th December 2013. Â Â The film is about the time Jane’s Dad spent on a psychiatric ward and was programmed to illustrate the lived experience of people living with dementia – it seems that people were truly shocked by what they saw and we have been humbled (and pleased) by the response to the film.
We have been making The Waiting Room for over five years, long before Josh died. Â Filming started when Jane’s Dad, (Josh’s Grandpa) Gerry went into hospital in 2008. Then aged 92, he had early stage vascular dementia and after her Mum Pat had a stroke and could therefore no longer look after him at home, efforts were made to find a suitable place for him in a local residential home but none were available. So Gerry was admitted to the Ailsa Psychiatric Hospital near Ayr, their home town in Scotland.
This was a far from ideal solution to the problems faced by the family, and with the thought that surely things would improve for both Gerry and Pat, we began to film with them both. As it turned out Jane spent more and more time trying to deal with a system (its called the NHS!) than actually being with her parents as they moved into the final chapters of their lives. Â She now sees these as lost years rather than last years. Â But Â as the dementia progressed to its inevitable end stage,Â Jane’s efforts to find a more ‘person friendly’ care package,Â a more stimulating environment, Â a more comforting andÂ less intimidating final ‘home’ for her dad, Â were mostly in vain. For reasons we believe were the result as much as the lack of care as of the progress of the disease, Gerry’s well being went into steady decline and he never left the hospital. Â Â He died earlier this year and you can see our farewell tribute to him here – FAREWELL GERRY.
FAREWELL GERRY was culled from the many hours of footage we have of Gerry and is a very different film to THE WAITING ROOM which had its first public screening at the Conference for the NCPC/Dying Matters Coalition. Â Â Shown at the start of proceedings, the film quickly became a talking point for the remainder of the day as delegates recognised it as a cautionary tale for a healthÂ service faced with an ever increasing ageing population many of who will die with dementia. Â You can watch it here.
This version of THE WAITING ROOM is 81/2 minutes long. Â It should and could be longer – it should and could be made available as a educational or training resource for all in the caring professions. Â Â But without adequate funding we are not currently in a position to develop the project further. Â So … Â if you or you know anyone who can help us achieve this goal, please doÂ contact us.
Here’s what people have been saying about THE WAITING ROOM
“amazing man, loved by his family failed by the system “ – Beth Britton @bethyb1886 (Leading Dementia campaigner and blogger)
“harrowing to see footage of a highly intelligent inventor shut in an empty room without stimulation. Â Jane has portrayed a hospital specialist dementia unit but it seems as if there’s no insight into the person they cared for” Â Simon Chapman @SimonSimply (Director of Public Engagement, Â National Council of Palliative Care)
“very moved by Jane Harris’ film about her Dad. Â Reminds us to look for the person, not the disease” Â Emma Hodges @StGilesDCEO (Deputy Chief Executive of St Giles Hospice
“a brilliant film” Â – Professor Alastair Burns (National Clinical Director for Dementia – Dept. of Health)
“a powerful film – No person with dementia should spend four years in hospital” – Sharon Blackburn (Communication Director, Dementia Action Alliance)
Unfortunately we didn’t have the following information at the screening of THE WAITING ROOM at the conference. Â Â We have only just had a reply from the NHS trust for Ayrshire and Arran as to the total cost of Gerry’s care while he was in hospital. Â Â And it is staggering – the cost per day for a patient in an Elderly Mental Health Bed is Â£408. Â Â Â So theÂ total costs for the four years that Gerry was in hospital amounts to close on Â£581,000. Â But this is a minimum estimate andÂ does not include the extras for two hip replacements and their aftercare, antipsychotic drugs, and the one to one observation that Gerry required to stop him getting out of his chair. Â Â Â Compare that with the costs for keeping Jimmy’s mother Emily (of a similar age and with a similar condition – advanced alzheimers dementia) in a private residential home Â – this is Â£650 per week or a possible Â£135,000 over four years – less than one quarter of the cost of Gerry’s care. Â Â This raises so many questions we can’t go into here but if you’ve watched the film you will know that Â this is money not well spent.
â€˜I had no idea how to talk to the bereaved.Â Until then Iâ€™d mostly avoided those whoâ€™d lost loved ones. I didnâ€™t know what to say so I said nothing. In a culture thatâ€™s distinctly uncomfortable with pain, this is a safe position for many people. We donâ€™t like to look that kind of loss in the eye for fear it might swallow us.â€
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. Â 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.Â Â Â Â â€œMy impotence was matched only by the abject futility of the titles â€“ When bad things happen to good people, Beyond the broken Heartâ€Â It was she says â€œlike trying to fight a firestorm with a watering canâ€.
And as I continued to read her article (Giving Grief a Voice) I was struck byÂ the way that Jill was prepared to go that extra mile to try and make sense of something so senseless, so unthinkable. Â 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 Joshâ€™s death that when a child dies everything is thrown up in the air – nothing is ever the same again.Â I will never â€˜get overâ€™ or â€˜move onâ€™ from Joshâ€™s death, but some of my friends have reacted in ways that suggest they wished I could.Â Grief taps into emotions and feelings that I never knew existed either for me or my friends.Â Reading about what grief is like from the perspective of another bereaved parentâ€™s friend, from someone who was, it seemed, prepared to face her own demons is Â therapeutic and comforting. Â Jill acknowledges her friends pain with an unabashed honesty. Â Â ‘Grief isn’t pretty and it’s rarely quiet. Â It can be a skin-scratching evisceration, that rattles through every nerve ending and rasps on each breathe. Â Denying it a voice isn’t healthy. Â 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.Â She was afraid of upsetting us and deemed it probably safer to say nothing. Â I explained the ‘elephant in the room’Â syndrome â€“ when nobody talks about Josh it makes it so much harder for us to relax in social situations.Â Instead we put on a mask that says â€˜Iâ€™m OK â€“ please donâ€™t bother yourself with my sadnessâ€™. This, it seems, only prolongs the silence. I know that to see someone grieving is not a comfortable sight. Itâ€™s unpredictable and raw and I use the mask to hide my pain. Iâ€™m sure that in the earlier stages of life after Josh,Â I must have seemed like an enigma to my friends.Â Â Iâ€™ve landed on a strange planet and they no longer recognize me.Â Â But I was seeing them differently as well.
In his new book â€˜An Astronauts Guide to Lifeâ€™, Â Chris HadfieldÂ talks about what it was like to see the earth from the moon for the first time.Â He would, he said, never see the earth in the same way again.Â Â Grief colours your world differently and we are strange to others.Â Â Â 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’. Â Â 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.Â Â Grief needs to be spoken. Â â€˜One of the hardest things in the aftermath of Judeâ€™s death’ says Fiona, ‘was the feeling he was being erased.Â Some people would say anything to avoid talking about him â€¦. (but) to mention his name doesnâ€™t remind me that he died, it lets me know the people remember that he lived.â€™
Iâ€™mÂ 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.Â Â Â Since Josh died I have feltÂ similarly isolated though I donâ€™t think the prejudice is as overt, and it is important to say here that I am neither black nor disabled.Â Â Â 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. Â Claire Schimmer told me Â ‘Itâ€™s probably unsurprising that weâ€™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 actingÂ Â Itâ€™s difficult and confusing being with friends who are grieving, not just because of the lack of vocabulary but because, if weâ€™re honest, one of the first thoughts is â€˜thank God it wasnâ€™t meâ€™.
Jimmy and I made a conscious decision to speak out and write about what it is to experience the death of a child.Â While many of our feelings still remain private there is much that we want to be more public about, hence this website.Â Â 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. Â We might thenÂ feel less isolated,
Claire again: ‘Iâ€™ve also learned that itâ€™s reasonable to be curious, to ask questions and not feel that somehow the interest is obtrusive or even unhealthy â€“ and thatâ€™s the unexpected bit; I feel that what Iâ€™ve learned from this hasnâ€™t made me more anxious about death, but rather the opposite. Iâ€™m still very glad it wasnâ€™t me, but I donâ€™t feel guilty about that any more, and I understand now that it doesnâ€™t get easier and you donâ€™t move on, but that shouldnâ€™t stop the friendship as it might bring things you otherwise wouldnâ€™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 shouldnâ€™t decide that Iâ€™ve moved on, accepted my loss or (god forbid) replaced my precious son. Instead people should know that itâ€™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. Â 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.Â 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.
Weâ€™ve done it.Â Â Weâ€™ve been to Vu Quang where you died in the middle of the road.Â Â Â It feels nearly as hard to say that as when we first heard the news of your death.Â But it is real, just as your death is real so we really have been to see the place where you died and to meet some of the people who were there at the time.Â Â Â In a sense these are the facts, what we make of them, how we remember them, what stories we tell around them and where we put them in the timescale of our own lives is another matter.
Our day began on the morning after the night train from Hoi An to Vinh.Â Â Actually this final part of our â€˜pilgrimageâ€™ to see where you took your last breath really started as we boarded the train with that sense that here we are at last; after more than two years we will soon be connecting with you in a way that we never wished weâ€™d have to.
The train is cramped, crowded and noisy and we get very little sleep but as the morning light comes up, weÂ nowÂ know that we are in Ha Tinh province, up until now only a name on a map, a name in a police report.Â Â We are glued to the window as the countryside lumbers past, spellbound by the sheer number of lotus flowers and paddy fields all with peasants in conical hats working the land. Â Our first opportunity to soak up the atmosphere of rural Vietnam.
Next door to us is a family of 10 happily cramped in to their tiny compartment. Their two youngest boys have spent much of the journey (irritatingly and charmingly) tapping on our window and pressing their noses against the glass and then running off down the corridor chasing a tennis ball. Squeezing past them is the steward and his trolley offering up rice and soup for breakfast which we decline politely. The last timewe were on such a sleeper we were on our way to Italy.Â You were eight and Rosa was three.Â We were going to Â spend a week with Sam and Doone and their Mum Adrienne. Remember the dead snake they were so keen to show us as soon as we arrived.Â To feel you so close yet to know you couldn’t be further away is so hard. and we wish with all our heart we could hug you one last time.
We are met at Vinh railway station by Uoc, the Vietnamese secondary school teacher who helped your friends after the accident.Â Â He is one of very few fluent English speakers in this remote part of Vietnam.Â Josh, we want you know this about Uoc; he is a complete LEG-END. One of the kindest, most thoughtful people we have ever met. Before our trip, and whenÂ first we contacted the British Embassy in Hanoi we asked how we could find the man who was called out from his class to translate and help with the police reports. We received an email almost by return from Uoc himself â€“ it was as if heâ€™d been waiting for us to find him. Â Now as we step of the train (which is running nearly and hour late) he is there to greet us.Â Â He has spotted us immediately (mind you, we are pretty easy to identify as the only white people on the platform) and guides us to a food stall under some trees near the taxi rank. Uoc has the look of a young boy, with wide eyes that are hungry for knowledge and as we sit drinking sweet cold sugar cane juice, he begins to tell us what happened when he arrived at the scene of your accident.Â But it is all too much too soon. We have only just stepped off the train and we need to adjust a little more to being in the presence of the man who wouldâ€™ve seen your body lying in the road. The enormity of what lies ahead for us, is, we realize, only now beginning to sink in.
We arrive at Uocâ€™s home town Huong Son after a two hour dusty car ride through countryside that we imagine you too would have been familiar with.Â Â Â Not that many cars on the road but so many motorbikes, so many trucks and buses, all with horns blaring, weaving through potholes, overtaking, undertaking, this side, which side of the road, all avoiding each other and all surviving, all somehow staying alive to do the same tomorrow. Â Â It is midday and Uoc takes us for lunch.Â Huong Son is not the sort of place for restaurant so you get and you eat what youâ€™re given. Soup, noodles, pigs foot, some spring rolls (as you will know you get spring rolls of varying quality everywhere in Vietnam) and some strange pickled berry things that are common fare for the indigenous peoples from the hills not far from here â€“ (not that nice!)
Huong Son buzzes with life but it is far from the tourist trail and the rooms in the hotel Uoc has booked for us are dark and decrepid; a Turkish jail would have more charm.Â Very basic really, particularly after the luxury of Â the house in Hoi An but again the sort of place you wouldâ€™ve taken it in your stride â€“ (note to selvesÂ – must look up that footage you took of deciding who should get the beds by playing paper/rock/scissors â€“ you lost we think). Â But Uoc has planned everything for us with real sensitivity and he wants us to be fully rested before he takes us to Vu Quang. Â Jimmy and Joe doze, Jane stays awake. Â It is late afternoon when Uoc comes back to collect us.
Vu Quang and the moment on Ho Chi Minh highway where you swerved to avoid an old man walking his bike up the hill, is a short half hour journey away. Â In the car with us are Uoc, his sister and his two year old baby daughter Sami who bounces around between front and back seat. There is something normalising about them being there. For them just another ordinary day out. Rosa points out Vietnam is so spiritual there is room for both life and death here.
We are now traveling down the same road you and your friends were on two years ago and we can all sense the exhilaration and the real fun you would be having on your motorbikes as the countryside, this beautiful countryside sped past.Â The road rises and falls over a gently undulating landscape of forest and farmland both meeting the roadside as abruptly as past meeting the present.Â Â The driver narrowly misses a water buffalo which has decided to resist its owners attempts to prevent it taking a shit in the middle of the highway.
A mile or so later we begin to recognize the landscape from the photos of the area we have seen on Google Maps.Â The road divides into a dual carriage way and the line of lampposts on the central island stretch into the distance. The driver slows and pulls over to the side as we approach what looks like a roadside police check and our first thought is we have been booked for speeding. But Uoc has arranged for us to meet the cop who attended the scene of your accident.Â This is amazing. Uoc really has thought of everything to make this journey of ours as meaningful as possible.Â The policeman looks at Joe and then at Rosa saying they must be your brother and sister as they look so much like you. Â He then follows on his bike and a couple of miles later we again pull over to the side.
We are here.Â The heat blasts us as we step out of the car.Â (All new cars in Vietnam have air-con â€“ but we guess you know that!) Itâ€™s like walking into a wall of solid hot air but we also have a very real sense that we are stepping through a curtain of time, to a place where time itself no longer has the power to order our lives. The early evening sun throws long shadows as we clamber out onto the tarmac. We are a now family of five again, together in spirit and bound by love and our completeness spreads out across the hard gritty surface with an unexpected and soothing calm. Here at the place of your death we can feel the chains of mourning beginning to loosen just a little.Â At first there is nothing to say.Â Then our wondering becomes wandering and silently we begin to explore the scene, each our own archeologist superimposing previous imaginings onto this very real, this very actual roadside .Â Â Â When did we-five become we-four?Â Â How did five become four?Â Why, oh why did we lose you? Â In some ways we already know the answers to these questions so what we learn here is confirmation not of the facts of your death but a sort of joining together of our own stories â€“ stories that were â€˜thenâ€™ becoming much more stories that are â€˜nowâ€™, and stories we can now perhaps stitch together into the fabric of what has to be â€“ our lives continuing on while yours does not.
A constant stream of dumper trucks labours up the hill from the nearby quarry.Â Â Past them and on either side flow motorbikes with a variety of loads, hay bales, water canisters, mattresses.Â Â Did you see them like we see them now?Â A farmer harnesses an ox to his cart and leads it across the road oblivious of the traffic.Â Did you notice him?Â Somewhere behind a gateway a dog barks.Â Â Did you hear it?Â And did you see, did you sense, were you aware of the people rushing to the roadside as you fell?Â Â Because Josh, just as two years ago when they came to witness something out of the ordinary on this unremarkable stretch of the Ho Chi Minh Highway, so now they are gathering to watch and observe us, a party of Europeans with their cameras and their sunburn and their somber looks.Â There seems to be Â something vaguely amusing in this spectacle until Uoc explains our presence. He thinks he has discovered someone who actually saw your accident: someone who then explains at length the events of that day. The crowd assembles while we wait for the translation, but it turns out he is only a friend of the person who saw it.Â Â As would happen anywhere, everybody wants a piece of the action, Â a claim on the tale to be told; especially when death is one of the players. This is of no consequence. It is clear that all the stories of that terrible day do tally and we are content just hear the sound of voices and be in the presence of strangers that have also been marked by your death.
And Josh, they have been marked and they do remember.Â Â Â On 16th January each year since, a small shrine appears by this roadside. Wherever we have gone in Vietnam, people remember their dead by bringing offerings, (you will like this Josh) of sweets, beer, chocolates, fruit and cake! â€“ and of course incense.Â Uoc says he too comes here on that day bringing as he does today a box of cakes.Â We begin to prepare our own shrine for you. We have brought a few momentos; some photos, one of your business cards, a Ministry of Sound CD, a card from the Gales, a string of shells that Hollie and Charlie have made. One of the villagers runs over with an old yogurt pot filled with sand. This is to place our incense sticks and at first he wants to put it in the middle of the road, on the actual spot where you lost your life. Others are walking out into the highway to debate the point. Is it here, no more likely it is there, perhaps it was here; we can see them becoming quite troubled in their need to get it right. Â Would you know, would you care?
In the end we call them back to the verge and the yogurt pot finds what feels like its rightful place under the safety barrier. Uoc leads our little ritual and lights the incense sticks which we take turns to set in the sand.Â This is our biggest moment and it is not without tears – Â and a long, long group hug. In the purest and simplest way possible we are honouring you and we are remembering you with a small ceremony that is and will remain as important to us as your funeral.Â Â But this time we are borrowing from another culture and another set of beliefs where people are expected to live on, to be reincarnated, where karma is of utmost importance to life and death, and where the spirit of ones ancestors have a sacred place at the heart of every home to be looked after and revered for all time.Â Â 80% of Vietnamese are Buddhists and practicing or not there isnâ€™t a house in this country where the first thing you see as you enter is a shrine to the departed.
Uoc, his sister, and 2 year old and the policeman are squatting by the roadside.Â They are watching Joe as he ties some Tibetan prayer flags onto a lamppost (another gift from the Gales).Â Below it he scratches your name.Â Rosa scratches a kiss. Â Uoc promises that he will continue to come here every year on January 16th â€“ and we believe him – absolutely. Â ‘This is’ he says â€˜your day of the deadâ€™.Â We are not Buddhists and we donâ€™t believe in life after death, but what we did last Monday was deeply affecting.Â Â We will carry this moment and make it part of our goodbye to youâ€¦ our forever.
With so much love
Mum and Dad
Ps – later that evening Uoc invited us around to his house for dinner. Â Afterwards some of his students came round eager to practice their English. Â Joe was more than happy to oblige with an impromptu evening class.
I was nervous and exhausted and so apprehensive about our trip but from the moment of arriving in Vietnam I have felt as if I was at home. Â Nothing is familiar but yet it all feels right.Â Â Ho Chi Minh City was one surprise after another and our 3 days there were a chance to relax despite the frenzy of the city. Â We visited the Mekong Delta, then on to the house swapÂ I had arranged in Hoi An half way up the country. I had been wondering if it was a virtual fantasy as the pics on the Internet verged on the unreal. Â Glad to say it meets all our expectations and a few more.
Owned by Vietnamese author of many books about Vietnam, Anna Moiâ€™s house was built by French architect Jacques-Emile Lecaron and is breathtaking.Â Built in a style that replicates natures shapes and forms we feel as if we are amongst the palm trees floating in the air.Â Our bathroom which had no walls just wooden slats for windows that can be opened to the sky.
The 4 of us slow right down.
Â Hoi An 23rd May – Joshâ€™s Birthday
Our 3rd celebration of Joshâ€™s birthday without him. Each year since his death we have marked it as a family quietly and intimately supported by the love and good wishes of our friends and Joshâ€™s,Â This year is no different except this timeÂ we are finally strong enough to visit the country where he spent his last few happy days in his life cut way too short.
The other difference is that our friendship group has changed and realigned as some friends have been tested by our openness and moved away as other friendships have deepened and strengthened through shared sorrow. Â Â Though our world is reordered and different I am noticing that as time passes it becomes slightly more possible to live with our pain.Â Â The hole is still as big but it is getting less jaggy round the edges and much more tolerable.
Helping us to make a ritual for remembering Josh on his birthday is Anna Moiâ€™s father, Kha who is 91, a Buddhist and a yoga teacher. He lives simply in a separate part of the house, meditates every day and exudes wisdom.Â Â His tells us his wife died 3 years ago and he had to return to Vietnam from LA where he had moved some years before. He misses her terribly and I am reminded yet again that every grieving journey is unique.Â However there are also so many overlaps as I have been discovering these last 6 months while we have been making a film for the Compassionate Friends called Say Their Name.
Kha is comfortable with our loss as we are with his and he observes gently how painful it must be to lose a child. He gives us no advice just acceptance and this feels good. Â He explains about Karma and cause and effect. He explains that maybe Josh will be reborn as a flower or a plant or even an animal and if he is lucky and was a very good person maybe as a human being! Â But he also adds that this would only happen 2 or 3 years after his death. I say Josh died just over 2 years ago and Kha smiles knowingly. I feel Joshâ€™s presence so strongly and comfortably that I reckon this may just be the case!
Kha recites a Buddhist mantra for us at the little shrine we have created on the dining room table: playing cards, a photo, a string of sea shells (a gift from Josh’s friends Hollie and Charlie) and some flowers picked from the garden byÂ Khaâ€™s carer, Hai. Â Hai is a beautiful, pick up best slots and casino on Svenskkasinon website gentle woman who laughs at our wide eyed surprise at everything new as well asÂ at our strange eating habits. (I have to admit I struggle with black beans and noodle soup for breakfast)
In his new book Levels of Life, written some four years after the death of his wife Julian Barnes talks about the experience of surviving a loved oneâ€™s death.Â â€œGriefâ€ he says â€œis like death. It is both unique yet banalâ€.Â Â There was a time when Josh could be reluctant to admit being over excited about anything.Â Like leaping out of an aeroplane for that parachute jump on his 21st birthday â€“Â â€œHow was it?â€ we asked.Â â€œPretty banal reallyâ€ came his reply.Â Â Strange how the same word can belong in two so very different emotional settings.Â Â Â Â Yet I feel consoled by this juxtaposition of Barnesâ€™ observation and the memory of Joshâ€™s dry humour.
We talk a little more on matters of life and death and then, in turn. we all light a candle to remember our son and brother. Â Joe puts on Star by Primal Scream, the tune that came to mean so much in the days after Josh died.
Â That evening the river front in Hoi An became a seething mass of humanity as people gathered to light candles to mark and pray to the full moon. Â We scrambled Â aboard a flimsy boat and set the ones we had bought for Josh afloat and watched as they drifted off to join a glorious mix of dazzling colours. Â I was again struck by the sheer synchronicity of this event unlike no other I have experienced in my life – with the exception of Josh’s funeral and the viral candle lighting ceremony.
I thank Josh for bringing us here to Vietnam. I feel him everywhere and understand for the first time that just because he is dead, no longer alive, it doesnâ€™t mean that he no longer exists.Â Being here is right for us as we move on to the next stage of our grieving journey.
The first Ministry of Sound intern to be selected from the Josh Edmonds Memorial Scheme will start work in July of this year.
Lewis Murphy is currently in his 3rd year of a radio production course at the University of Gloucestershire and is the first person to be chosen for what will be an annual award. Â The standard of applicants was very high and a difficult choice had to be made from our shortlist. Â But we all feel that Lewis is the ‘man for the job’ and we’re Â really really excited to be able to offer him this opportunity.
Lewis is particularily Â interested in radio production and has hosted and produced a weekly show for students at his university. He has also had a weekly two hour slot on Cheltenham based Drum&Bass radio Undergroundsoundz. Â His ambition is to have his own podcast up and running with the content being from entirely Â new or Â unknown and unsigned Â producers and DJ’s. Â For the future he would like to present his own radio show or work for a specialist music show or station.
Lewis is Â a very talented and enthusiastic young man, his passion for music (particularly drum & bass) and his independence of spirit is very similar to Josh’s and we hope he will get as much out of working at MoS as Josh did.
Lewis told us he was both honoured and overjoyed to be the first to receive the award.Â “The prospect of the internship feels like a reward at the end of my degree and is a big step in the right direction for me, allowing me to develop as a person as well as within my career. The combination of my passion along with my creative drive motivates me to use this incredible opportunity to its full potential, making sure I do it justice. Â I look forward to meeting and working with everyone at the Ministry of Sound.”
MoS chief Lohan Presencer saidÂ â€œWe are extremely pleased to have secured a quality intern for MoS who will reflect the attributes we saw from Josh during his tenure with our organisation.Â We wish Lewis the best of luck and we will provide him with Â support and development during his placementâ€
So good luck Lewis and we hope that you’ll keep us updated with your time at MoS.
Last week we survived (is that the right word) the second anniversary of Joshâ€™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 â€“ accident â€“ we are still not precisely clear what happened â€“ but in a second his life was gone.
That was two years ago and still itâ€™s hard to believe the reality of our lives. Each morning is still a trial â€“ one of having face yet again the enormity of the tragedy â€“ 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 Â in the days leading up to his â€œanniversaryâ€ or his â€˜death dayâ€™ as we struggle but want to call it.
Just what does this particular day hold that the others donâ€™t? Do we really want to mark it was we would celebrate a â€˜birthdayâ€™? We know that many bereaved parents really dread the day and hate the idea that the anniversary of their childâ€™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.
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 canâ€™t always be together but if there are times when we can make an ordinary day special and shared with love, then surely joshâ€™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 â€“ (such a relief from all the well intentioned but disturbing â€˜happy christmassesâ€™) and weâ€™d like to share some of these simply beautiful heartfelt messages now â€“
A card from one of Joshâ€™s old school friends â€“
â€œAnother 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 â€“
â€œI 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 Rosaâ€™s friends
â€œI 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
â€œthese 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
â€œthinking of you all we will light a candle for josh tonight and leave it burning till morningâ€
From a neighbour
â€œJust 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 Joshâ€™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, itâ€™s a pain that canâ€™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 elseâ€™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.
How do you spell blogosphere? Â We’ve not really been there before but now that a number of blogs have been spreading news about BEYOND GOODBYE, I guess its time we took a look.
First off, this lovely woman from across the border in Scotland added an item about the film on her site – see it hereÂ final fling. Â Final Fling is a great site started by one Barbara Chalmers who has dashing white hair and wears bright red lipstick. Â Â From what I can gather she’s an artist, a life coach, an independent celebrant and plays in a samba band. How she finds time to put this site together is beyond belief but its full of masses of information about what to do to prepare for a good death and a good funeral. Â Â Nice site Barbara – and thanks for spreading the word about our film.
You’ll also find Beyond Goodbye on the front page of the Natural Death Centre’s website . Here they’ve used it as an example of what is a good funeral. The Natural Death Centre is the main resource in this country for independent funeral advice. Â They see their role as “playing a central part in demystifying the traditional funeral, encouraging thousands of families in having the kind of funerals they wanted, and helping create opportunity for new rituals to emerge.”
Earlier in the year the film had been featured on Seven Ponds, a website on the west coast of USA – see here for some of the comments. Â Â Seven Ponds also blogged about Rosa’s show In Absentia. Â Â Â Suzette Sherman, founder of Seven Ponds says in her introduction, “We see a world where everyone can experience death in their own personal way and feel it’s all okay”. Â Â Everyone’s death is unique and everyone will experience grief differently. Â Seven Ponds is a fantastic resource for helping people to embrace end of life with real love and compassion. Â As well as being environmental friendly, with advice about planning a home funeralÂ (home births why not home funerals?)Â the site also has masses of examples of the ways people have responded to death and dying in art and creativity.
Dying Matters is part of the National Council for Palliative Care with a missionÂ â€œto support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make â€˜living and dying wellâ€™ the norm”. Â Â Â Its actually a coalition of various organisations across the NHS, voluntary health and care sectors, trade unions, the funeral industry and more. Â Â Â It’s website recently featured our contribution to their Day of the Dead conference. Â We had showed our film at the event and Â Jane’s had spoken about bereaved parents being peoples worst nightmare. Â Â The article Turning grief into positive action quotes herÂ â€œour aim is to share our grief in a positive way, both for people who know us and those who don’t. We hope that in our death-averse culture, by bringing our experience into the public domain it will encourage others to open up more about an area so shrouded in silence….Â Our aim was, and still is, to celebrate Josh’s life as well as mourn his death.â€
The one thing in common with all these links is the wish for people to have meaningful and life affirming experiences of death, dying and bereavement. Â Â And the best way to do that is to talk, Â to shareÂ feelings, and be a support for one another. Â Â What’s amazing is that through the internet, it’s now possible to find a sense of universal understanding and compassion from people we may most likely never meet. Â Â Â Â We are glad that, from our own tragedy, others have found some comfort (and perhaps example) from the things we’ve done for Josh.
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.Â Â Â Â You can listen to the full interview here.
And listen out for the song “Joshua’s tree” written and performed by Jessica Carmody Nathan