I’ve recently been watching re-runs of US political drama The West Wing where Martin Sheen is president and he is surrounded by a team of staff who advise him on all his major decisions and speeches (imagine!)
One of the main characters, Leo (who himself had overcome some personal difficulties), tells this story to one of his colleagues who was experiencing PTSD.
A man falls into a hole and the walls are so steep he can’t get out.
A doctor walks past and the man shouts up ” Please can you help me get out?” The doctor writes a prescription, throws it down the hole and walks on.
Then a priest walks past and the man shouts up ” Father, please can you help me get out?” The priest writes out a prayer, throws it down the hole and walks on.
Then a friend walks past and the man shouts up “Hey, I’m stuck down this hole, can you help me out?” The friend immediately jumps down into the hole and the man says “What are you doing?! Now we’re both down here!” But the friend says “Yeah, but I’ve been down here before and I know the way out.”
When I heard this it brought a tear to my eye and a lump to my throat, because it beautifully illustrates the power of helping others through situations that we have experienced ourselves.
When I started Bereaved Children Support York it was with the aim of giving children who had experienced the loss of someone significant to them the opportunity to meet others in a similar situation to help relieve feelings of isolation. This has been the case, but another benefit that has become apparent is the value of this shared experience for the parents and carers too. Both speaking to those who are at a similar stage of the grief journey to them and also, like the story highlights, speaking to those further down the road to hopefully reassure them that there is hope and that it does get better.
Our lives will forever be changed by the loss of those we love, but hopefully we can find a way to move forward and look to the future. It feels impossible at the beginning in the early throes of grief, but it can be reassuring to meet, speak to and read about those who have come through the other side.
Not that it’s that straightforward of course! There is no straight path of grief with a neat beginning, middle and end and as I approach the 6 year anniversary of the death of my husband all those feelings begin to resurface. It is not a surprise and as the sunlight takes on a mellowness and the start of the new school year approaches the feelings of melancholy return, like an uninvited visitor who turns up on the doorstep and moves into the spare room.
However, it does help to be part of a community of people who support each other both through the good times and the challenging times when you feel like you’re at the bottom of that hole, because most importantly….there’s usually someone who knows the way out!
When you have lost someone significant in your life it is only natural that there are things that remind you of them. In the early days it feels like everything reminds you of them. Every song that comes on the radio seems to hold a memory or significance, every TV show or sporting event a reminder of the person who is missing it. Another series of Strictly. Another Olympics. Another cup final. As time goes on these instances become less frequent as new memories are formed. Not that they are forgotten but it is not so all consuming.
So, I have been somewhat taken by surprise with recent reminders of my late husband 4 years on.
A frequent one is seeing offers on multipacks cans of Diet Coke! My hubby loved Diet Coke. He drank buckets of the stuff and would always be excited when he found a good offer. So when leaflets drop through the door with offers from local supermarkets, my eye is still drawn to the Diet Coke ones!
The next is smell. My son has taken to using the same deodorant as his dad, so in the morning the landing smells of my hubby. I’ve got used to this now, but I was taken aback a while back when I was scanning my shopping at the self checkout in Sainsbury’s and the man next to me was wearing the same aftershave that my husband used to wear. For a split second I thought he was there. It’s the strangest feeling. And then a couple of months ago I was sat at a Neil Diamond concert and the man who sat down next to me was also wearing my husband’s aftershave. Smells are so evocative. You can’t rationalise them or filter them. If a smell reminds you of a person or place you are transported there immediately and without warning. No time to say ‘no not at the moment thanks I’ll think about that later…at a more appropriate time’. Nope you’re whisked off there even if you are sitting in an arena or standing in the middle of a shop!
Which brings me to the most recent incident. Walking through M&S and seeing a mannequin wearing a dressing gown.Nothing unusual in that you might think, but there was something about the style of the dressing gown and the pose of the mannequin that reminded me of him. I automatically thought ‘Oh he’d like that. I could get him that for Christmas’. This will be the 5th Christmas I haven’t bought my husband presents, yet the thought is still automatic if I see something he would’ve liked.
As the years pass and the feelings aren’t so raw it surprises me even more that these emotions still hit hard at times. That gut wrenching feeling in the pit of your stomach that the person you loved isn’t there anymore. You get caught up in the routines of daily life, but just occasionally these moments come out of left field and floor you! However, you pick yourself up, dust yourself down and get on with things again. Acknowledging the feelings, the grief, the sadness, the loss, but remembering with affection the happiness in those memories.
Today is the beginning of Children’s Grief Awareness Week UK (16th-22nd November 2017) with the focus on acknowledging the painful impact the death of a loved one has on a child and giving an opportunity to make sure the children receive the support they need. #YoureNotAlone.
Bereaved Children Support York was created nearly exactly 18 months ago, for that reason. So that bereaved children could come together and realise they are not alone and that other children have experienced a similar loss. Our aim is to support children and their families living in the York area, so they are better able to cope with the impact of bereavement on their lives. We do this in 3 ways.
1. Monthly Peer support Drop-in sessions
This is how it all started, with toys, crafts and resources and an opportunity for bereaved children and families to come together in a relaxed and friendly environment knowing that everyone there has experienced something similar, because losing a significant person in your life, especially as a child, can be incredibly isolating.
This year we have moved to a bigger venue, with better facilities and more space for the children to play. Oh and it has an Xbox! This has definitely meant that the children are interacting much more and have been able to be more creative in their play.
2. Therapeutic Support
We are delighted that we are now able to offer one to one therapeutic support provided by experienced Bereavement Practitioners for those children who need it. Not every child who has been bereaved needs additional help outside their existing support network, but some do and we want to be able to offer this service. This is running as a pilot project initially to gauge demand, but we anticipate this will be high and the service will expand according. Anyone can refer a child, but we do ask that parental consent be obtained. (Please contact us at email@example.com for more information).
We also wanted to be able to offer training for schools on how to best support the bereaved children in their care. We know from the families we have met that some schools do a fantastic job in supporting their bereaved children, but others not so much. We hosted our first training day in October led by a great facilitator from Child Bereavement UK. The feedback was overwhelmingly positive so we are putting the finishing touches to a second training day to be held early next year. Children spend so much time at school and the normality and routine can really help those who are grieving, especially in the early days, but it is so important that schools realise the impact of grief and that it is an ongoing process. Not time limited. In fact often as a child reaches a new level of maturity they will experience their grief in a new way. It’s not all done and dusted after the funeral or once the first anniversary has passed.
It is all made possible because of some wonderful people and fundraisers
We are now an officially registered charity (no: 1171422) with Lisa and Yvonne joining the team as trustees and we have received some fantastic grants and donations from various organisations and individuals. Our initial grant was from the Ed de Nunzio Trust, which enabled us to establish the Bereavement Practitioner pilot project and host the first training day. Since then we have received generous donations from Ambiente, The Phil Curtis Annual Fun Day, Bel’s 10K, Sally and Wayne’s wedding gift and Kathryn’s dad as well as other individuals and the ’round pound’ collection! We have been overwhelmed by the generosity of people and we are so very grateful. Thank you!
So what’s next?
We are planning to keep doing what we’re doing…but try and reach more bereaved children, young people and their families. We are starting to arrange get togethers for the adults and in the process of writing a new leaflet to distribute to schools, GP surgeries and other organisations outlining the support we offer. We will be running another training day for schools and also looking at ways to develop support more specifically aimed at teenagers and young people. We are also delighted to be the official charity partner for the mini and junior runs at the York 10K in August 2018.
These children and young people have all experienced the most devastating losses in their young lives. We can’t take the pain away, but if we can help them and their families find a way to feel better able to cope with their grief then we will have achieved our goal.
So, you might be wondering why I started writing these blogs that occasionally appear on your Facebook newsfeed or maybe you’ve never given it a second thought, but I’m going to tell you anyway! (So if you don’t want to know the reasons…look away now!)
To help others
The main reason I write my blog is to (hopefully!) help others in similar situations to those I find myself in. It’s certainly not a pity party. I try not to moan and I do aim to inject some humour if I can. Personally I find it reassuring to read about someone who has had a similar experience to me, so I hope others find it helpful too. I have written about the reality of living with MS, bereavement, single parenthood and setting up a charity along with others on anxiety, anger and changes to the benefit system. My hope is that others will find reassurance in reading my experiences, even if it’s to make them feel that they’re making a much better job of it than me!
Raise awareness and challenge preconceptions
I love to write to raise awareness about different topics that the general public may be unaware of. Fortunately most people don’t know what it’s like to live with a chronic condition, especially when many of the symptoms are invisible. So I try to explain what that’s like so that people have more of an insight, because there are actually many people living with all sorts of ‘hidden’ illnesses and it would be great if there was more of a wider understanding.
I like to try and challenge preconceptions too. Following my experience of bereavement, both personally and through the charity I run, I realise that the general understanding of grief and more specifically how children grieve is often misunderstood. I hope that some of the blogs raise awareness about the needs of these children and families and how we are seeking ways to meet them.
It’s also a good way of talking about issues that are often more difficult to discuss face to face, like mental health issues. It’s a whole lot easier to write it down and share than it is to drop it into a conversation, but it means that people who are experiencing similar difficulties know they’re not alone and might even feel able to ask for help or at least talk about how they are feeling with someone else.
It is also a good platform to raise awareness about political issues like changes to the benefits system, the NHS and education. I get to vent my spleen about injustices!
I’ll be honest, I do find writing therapeutic. I have developed a love of writing that I’ve never had before. Iwrite privately for my eyes only too, I don’t share everything publicly, but there are occasions that I think it’s worth sharing a version of my thoughts more widely.
However, these blogs are not me spilling all of my innermost thoughts onto the screen, they are the edited, relevant highlights. It is therapeutic as in positive and helpful, but not therapy as in treatment. I firmly believe that the internet is not the place the bare your soul, but I think a little self disclosure can be helpful.
Because I have been encouraged to!
It’s all your fault! I wrote my first blog to mark World MS Day and was overwhelmed by the positive feedback I received from people…not just my friends (who have to be nice…it’s in the job description), but even some people I didn’t know!! So I thought I’d give it another go and that was well received too! So, it grew from there. I don’t publish blogs regularly, but more as topics arise and whilst the feedback remains positive I’ll keep doing it 🙂
I never felt I was very good at writing at school. I got a respectable B in my GCSE (and we won’t mention the A level result) but I was never confident in my ability. I got an ok degree, but again the writing didn’t come easily. It was always a challenge to reach the word count required for essays, but now I often have to cut down what I write because it’s too long! I think I found it difficult because it felt like it was all opinions about stuff that didn’t really matter. Whereas this stuff does matter. It matters that people going through tough times don’t feel alone. It matters that people have a better understanding of disability and grief and lone parenting. And if sharing a little of my experience provides an insight into those areas or helps to reassure someone in a similar situation then I think it’s worth it.
So what’s next? More of the same I think. I will continue to write about topics, causes and ideas as and when they arise. Regular readers will know I have been asked to write guest blogs for the national charity MS-UK, so that’s an exciting opportunity too. They say everyone has a book in them, I’m not sure about that, but a few hundred words in a blog? That I can do.
As this quote that circulates on social media suggests, people often don’t know what to say to the bereaved. They don’t want to mention the person who has died in case it causes upset and reminds them that their loved one has gone. Whereas the reality is, of course, that they never forget. They are reminded every day by the empty chair at the table, when they climb into bed alone at the end of the day or when their dad isn’t there to watch the match.
It is one of the last taboos. We don’t like to talk about death or we speak about it in hushed tones. This is particularly the case with children. We don’t like to mention death even though it is the most inevitable part of life. And for the children who are in the devastating situation of having experienced the loss of someone close to them at a young age, we often don’t know what to do for the best. We don’t like to mention it. There is often talk about the resilience of children in the face of tragedy, which implies that they should bounce back and move on. That if we fill their lives with busyness and positivity that they won’t notice that the significant person is missing. That they won’t remember the trauma of watching someone they love fade away or the shock of finding out that someone integral to their life has disappeared forever, with no warning. But this is obviously not the case. You can stuff their days full of dance classes and football matches, play dates and trips to the park, trying to fill every minute with activity, but the loss will still be there to deal with.
There is also the added complication for children because they often experience and revisit their grief when they reach eachnew level of understanding as they get older. It might be several years since a child lost their special person, but they are going to process it very differently at 13 to how they did when it happened aged 7.
There is no time limit on grief for adults or children and actually what is the ultimate goal? To deal with it, close that chapter and move on? I would suggest not. The person who has died was an important part of your life when they were alive so cannot and should not be forgotten now that they are not. Time definitely does help as the feelings and emotions aren’t so raw and the grief is not so all consuming as it is in the beginning. I guess maybe it’s to find a way forward that acknowledges the past and deals with the consequences of what has happened as and when they arise. This is certainly a challenge as an adult, so it must be even harder through they eyes of a child.
That’s partly why I started BCSY and the monthly drop-in sessions for the children. It is not so that they are reminded of their loss once a month on a Saturday afternoon, because as I explained earlier,they haven’t forgotten. It is with them all day, every day. However, it does give them space to actively ‘remember’ their special person by making and creating things in their memory, but equally they might just play and have fun with other children who understand. They don’t have to explain themselves, because for some children they have never met others in a similar situation to them and they can feel very isolated and alone. However, the children often do want to talk about their special person, sometimes about the loss but often about happy things they remember about them.
As we recently reached and passed the fourth anniversary of losing my husband it was lovely that a couple of people shared their memories of him with me. It was great
I don’t need to circle the date on a calendar or write it in my diary. I don’t need to set a reminder on my phone or pop it on a post it note. I can feel it in the air. I can see it in the heavy morning dew, in the leaves as they begin to turn to copper and russet and in the mellowing of the sun. I am reminded as the Bake off gets underway and the Strictly contestants are announced. There’s a sadness that descends. A melancholy that reflects the changing seasons.
I’m sure it’s similar for others whatever the time of year. For some it will be the sight of daffodils and lambs, for others Christmas lights and frosty mornings or pumpkins and fireworks. Whatever the reminder it will be there. The cue to remember what happened whether you want to or not. Of course you never forget. You think about the person who is missing every day, but there is something so very poignant about the run up to the anniversary of the loss. In fact I find the run up is often worse than the actual day itself. The day approaches with a sense of dread, but usually passes in a haze of painful memories, but with rituals to help mark it. A visit to the cemetery, a trip to a special place or a meal at a favourite restaurant.
As the anniversary of losing Neil fast approaches again marking another year since his passing. (How is that even possible? How can it be 4 whole years?) So much has changed, but the facts remain the same. He is gone. Leaving a wife without a husband, a son without a dad and the world without a Neil. And that still makes me sad. A life cut short, when it was just getting started again.
And it’s ok to be sad. It’s ok to remember and it is also ok to look forward too. It might not be the future I had envisaged, but out of the heartache hopefully something positive is emerging. An opportunity to support other children and families who find themselves in a similar situation.
So, I will look forward to the mellow sunshine and the changing colours on the trees. I will go hunting for conkers and enjoy watching the new contestants dancing and baking. I will embrace the melancholy of the season of ‘mists and mellow fruitfulness’ with remembering, reflection…and hopefully some of that autumn fruit in a crumble. With custard.