Choices… can I really choose joy?

June 2019 – 9 months without Ben

“Those who go through the darkness
Never come out the same
And it’s true what they say
That it takes a part of you away
But what many will never understand
Is that it leaves something in return
A strength that will never break
And a heart that will never surrender
Even in moments when it cannot see
Any other way out”

– Christie I. Starkweather

Every now and again a sudden burst of hope breaks through and I get an unexpected urge to fight back – to not let this terrible sadness defeat me! I think it must be Ben spurring me on – telling me not to give up!! It’s like he’s reaching right into my heart and whispering words of love and encouragement – willing me to find a way to keep going.

So I’ve decided to seize this rare moment of positivity and start exploring the concept of choice. I must have more control over choice than I realise – I can choose to give up or I can choose to survive. At least this is how I feel today – tomorrow might be different!

However just to be clear, choosing to survive (or choosing to feel joy) doesn’t mean moving on or recovering or healing or getting over the death of my lovely boy! It doesn’t make living without him any easier.

And… sadly if someone else had encouraged me to do this it would probably have made me angry – the mere suggestion would seem to devalue the magnitude of Ben’s death. I don’t want to admit it but there is an ugly side to grief.

Emotionally I’m still very fragile and trying to get to grips with this new life that I certainly didn’t choose and definitely don’t want or understand is hard. I know that I’m not going to recover or go back to being the person I used to be. Nothing about me seems to work properly any more.

From the moment Ben died everything I do or think or feel or say centres around grief and loss and death. I can’t ever separate myself from an indescribable pain that continuously reminds me that part of us is missing. Living and loving and grieving are all interconnected, with random measures of anger, confusion, despair and joy thrown in.

Yet Henri Nouwen in his book ‘Can you Drink the Cup?’ writes… ‘Joys are hidden in sorrows! We keep forgetting this truth and become overwhelmed by our own darkness. We easily lose sight of our joys and speak of our sorrows as the only reality there is…’

I’m very unsure about how I’m meant to behave or if I’m doing this grief thing right. Society seems to have a lot of unspoken rules and you only know you’re getting it wrong when met with an odd look, an awkward silence or people start avoiding you. There’s no guide book and no amount of training that could ever prepare you for the death of your child. It’s something we can’t anticipate because it’s something we never expect to happen.

I’m so afraid that if I manage to smile and sound normal people might think I’m fixed – that I’ve put the death of my darling son behind me! That I’ve moved on! But I can assure you that when your heart has been ripped out, torn into shreds and part of you died too – that’s quite simply impossible.

Grief is complicated and totally debilitating so please bear with me – my thoughts will probably jump around a lot. The incomprehensible task of limping (like a misfit) into this strange new world is a challenge to say the least. What I feel one day may actually be completely different the next. Everything feels wrong because it is wrong.

The simplest of tasks requires supernatural effort. Sometimes when talking to friends, I fluctuate quite seamlessly between laughing and crying (yes I do laugh sometimes), talking animatedly and falling asleep – my writing is similar and there is a blurred line between positive and negative emotions. There is no road map to follow and I’m told the stages of grief are unpredictable. However, the more I read about other people’s experiences, the more I find unexpected comfort in knowing that I’m not the only confused crazy disoriented grieving person, dragging myself around with a mask on – fighting to stay sane.

CS Lewis in his book ‘A Grief Observed’ writes about his confused state of mind following the death of his wife…

‘In grief nothing “stays put”. One keeps emerging from a phase but it always recurs. Round and round. Everything repeats. Am I going in circles or dare I hope I’m on a spiral? But if a spiral, am I going up or down it?’

About 8 months after Ben died we were preparing for a family camping weekend in West Wales. It was going to be particularly hard as it’s one of Ben’s special places and he should have been coming with us. I was searching the internet for a book to read and without any recommendation randomly came across an international bestseller by Dr Edith Eger called ‘The Choice – even in hell hope can flower!’

The title immediately caught my attention as the concept of choice felt strangely liberating after my world had spiralled so completely out of control. Plus the image of hell felt strangely familiar. Reading this book actually became a small but significant turning point and gave me some little glimmers of hope that it may actually be possible to live a purposeful life even in the midst of so much pain!.

Just to set the scene, Dr Eger was imprisoned at Auschwitz as a teenager and despite being tortured, starved and almost dying, managed to find the inner strength to preserve her mental and spiritual freedom. She wasn’t broken by the horrors she experienced but instead was emboldened and strengthened by them.

She writes…‘what happened can never be forgotten and can never be changed. But over time I learned that I can choose how to respond to the past. I can be miserable, or I can be hopeful – I can be depressed, or I can be happy. We always have that choice, that opportunity for control.’

She goes on to write… ‘Bad things happen to everyone. This we can’t change. But many of us remain stuck in a trauma or grief, unable to experience our lives fully. This we can change!’

I felt like I had been kicked in the stomach – I was challenged and inspired by her words yet at the same time realistically recognised that I’m still in the early stages of grief and living with a broken heart is pretty much annihilating. Grief hurts yet it’s an important part of coming to terms with loss – it’s proof of my love for Ben. I couldn’t have loved him any more than I did and still do. The big question is ‘how can I turn these feelings of total desolation into positive rather than negative emotions?’ How can there be hope when I’ve lost my darling precious child? How can I feel joy when part of me is dead inside? Is it even possible?

And just to be clear – choosing joy doesn’t mean going round with a big happy smile on my face. I haven’t properly worked it out yet but I know it’s something so much deeper – it must be an act of my will. A determination to force myself to look towards the light – to see beauty in brokenness; to find strength in pain.

Ben’s death is the most indescribably horrific life changing experience I have ever had to survive and I can’t over-emphasise the impact it has had, not just on Paul and myself but on each member of our family. It changed everything. Apart from missing him so much, we’re also grieving a future we looked forward to sharing. We had plans, hopes, dreams and expectations. We feel incomplete. There are days I don’t think I can keep going and days I don’t want to.

However, reading this book challenged me to keep trying – if she can do it, then so can I.

Ironically another favourite book which I actually read about a year before Ben died (maybe I was being subconsciously prepared!) is ‘Man’s search for meaning’ by Viktor E Frankl. He also is a holocaust survivor and became a good friend of Edith in later years.

Viktor was a psychiatrist before the war and observed the interesting fact – it seems that the men who comforted others and gave away their last piece of bread were the ones who survived the longest. This suggested that everything can be taken away from us except the ability to choose our attitude towards others in any given set of circumstances.

Could it be possible that despite our life changing tragedy I can do more than just survive – I can actually thrive by using the pain to help others? That acts of kindness really can nurture meaning and purpose.

I’m discovering that love is more powerful than death. I think I’m also starting to understand that love is an always present emotion whereas loss continually reflects on the past.

But I miss him so much – he’s not here!!

I’m desperately searching to make some sense of all this brokenness yet I’m so scared that any kind of healing might seem like betrayal – that acceptance might mean letting Ben slip further away. In a strange way the rawness of grief keeps him close – the heartache is a constant reminder to think about him (not that I ever actually ever forget).

Dr Egar writes ‘Time doesn’t heal. It’s what you do with the time. Healing is possible when we choose to take responsibility, when we choose to take risks, and finally, when we choose to release the wound…’

Just after Ben died our family and Ben’s close friends went to a tattoo parlour. Getting a tattoo was a very public way of showing how much we love him. It was only a week or so after he died – we laughed and we cried. I know that seeing me there would definitely have made him laugh too – he knew my (narrow minded!) views on tattoos!! It felt like he was there – such a beautiful permanent act of togetherness that he could still be part of. Most of us had the wave/mountain/river tattoo that Ben had designed for himself. He would love that. I’ve since had a sunflower to remind me of his smile. Paul had ‘Happiness is only real when shared ‘ which is the motto he lived by. Vic had ‘Be Brave’ written on her wrist, to remind her to do just that!

But being brave is hard. We try, we fail, we try again. It often feels like two steps forward and one back or even one step forward and two back!! We glean strength from each other, strength from God, strength from the love of friends but mostly we have to find a strength that is inside – strength that we didn’t even know we had. Somehow searching for and finding the hero inside ourselves (if that’s possible) seems to be what survival is all about. It may even be possible we could actually emerge from this terrible sadness as heroes, as fighters! I guess it’s something to aim for.

But even as I write this, I’m still frightened to let go of the rawness of grief because it keeps him at the forefront of my mind. I quite honestly don’t feel very brave but I also don’t want to live a joyless empty life.

Dr Eger writes – ‘To be a hero requires great moral courage. And each of us has an inner hero waiting to be expressed. We are all “heroes in training.” Our hero training is life, the daily circumstances that invite us to practice the habits of heroism: to commit daily deeds of kindness; to radiate compassion, starting with self-compassion; to bring out the best in others and ourselves; to sustain love, even in our most challenging relationships; to celebrate and exercise the power of our mental freedom.’

Wow!! The person writing those words has lived through unspeakable horrors. It’s wrong to compare tragedies – I haven’t lived hers and she hasn’t lost her gorgeous handsome funny awesome 25 year old son. But if she can emerge a hero, then I’m going to try – even if it takes the rest of my life. I need a good role model – I need to know that it’s really possible and I need to be prepared for the setbacks. I also need to make sure I take Ben with me!! Ben brought love, joy and happiness into our lives – I must hang on to that and try to live them for him!

However, even though trying to be positive is the right thing to do, sometimes I just can’t or don’t want to. The weight of sadness is too heavy, too suffocating, too disorientating and crying (howling in private!) is often my only release. The indulgence of being completely miserable can be therapeutic but it also can be self destructive. I’m starting to recognise there are times I have to force myself to choose joy instead! I can only do that by focusing on things that I’m thankful for- things that makes me happy.

But my mind regularly strays back to the 7th October 2018 almost as though by revisiting it, I can somehow change the outcome!!
We woke up that morning not knowing anything of the shock and horror that lay ahead. The day started out like any other. By lunchtime we had walked into the worst living nightmare we had ever known – and our lives were changed forever from that moment. That frightens me!! It happened so quickly, so easily and without any warning.

‘What a difference a day makes!!’

One minute our family was complete, the next it wasn’t! One minute Ben was alive, the next he wasn’t.

Despite fearing the worst, I chose to bask in my last moments of innocence as we drove to the hospital; I let myself believe that Ben would just be sitting up in a hospital bed laughing about all the fuss!! I chose to think positively until proven otherwise. The shock when we were told it was ‘otherwise’ will stay with me forever.

I was about to describe the vile gut wrenching moment when we found out he had died, but realised I can’t – It’s too indescribably horrific. All I can say is I wanted to die too!

Even now I can only accept that Ben is really dead for a few minutes at a time. I’m still numb and my coping mechanism is denial or simply believing he’s happily off on one of his exciting adventures. Most of the time I manage to convince myself that I’m living someone else’s sad story- it’s so surreal it can’t possibly be mine. I often feel like I’m existing in some sort of temporary parallel universe and at some point I’m going to subtly slip back into my old life – a bit like walking through the wardrobe in C S Lewis’s ‘The Lion The Witch and The Wardrobe’. If only that were possible!

I had no choice over the outcome that day – if love could have saved Ben then he would still be alive. The memory will always be cruel and brutal but I’m trying to force myself to see it as a reminder to choose to make every precious moment count. I know that if I remain trapped in the details of our tragedy I will deny myself the joy of enjoying the people around me who I absolutely adore.

However, I’m also learning that living with grief is constant. It doesn’t go away or get better. I’m not an expert on this but from what I’ve read, our lives grow around the pain. Even though I don’t want that to happen I can see it must be an involuntary acceptance of something I can’t change. Grief and love are so closely intertwined they’re actually keeping Ben’s presence wrapped around me. But…

– I hate that I had no control over what happened that dreadful day and there was nothing I could do to stop it.

– I hate that I had no inkling something so horrific was about to happen.

– I hate that I was completely unaware of the moment my darling boy’s heart stopped beating and I wasn’t there with him!

How did I not know something was so wrong- not feel something? I’m his mum – he was once part of me. I could feel his beautiful heartbeat inside me and yet when it stopped my maternal instincts didn’t kick in. We were with him when they turned his life support off but he was on his own when he collapsed and lost consciousness – the actual moment he left this world forever. I really struggle with that!

So … I’m desperate now to regain some control and this is why I’m drawn to the concept of choice.

I think I can choose (sometimes) how I live with this pain. I can choose to keep Ben’s memory alive by living for him . I can choose complete despair or I can choose joy and look for hope. I want to find that hero inside myself – the hero that isn’t going to give up and will keep fighting for a positive channel to express grief. A channel that will honour my beautiful boy and keep his awesome memory bright.

At the moment my channel is writing with the ultimate hope that by sharing these rambled thoughts I can connect with others who are living with this pain. Maybe my honest story of survival will be the catalyst to bring about some sort of personal recovery. Maybe my story can even become part of someone else’s survival guide!

The other thing our family has focused on is fundraising and raising awareness of the need for all young people to have their hearts checked out. We have been supporting local charity ‘Welsh Hearts’ who have set up the Ben McDonald heart screening fund. It helps to know we’re doing something positive with our tragedy.

I’m so thankful for some incredible friends who have stuck with me unconditionally in the most unassuming ways – asking nothing in return. They are truly angels and I love and need them so much.

For example just last night I had a text message from a beautiful friend who understands just what I need. She wrote –
‘I was thinking about how much you loved your breakfasts with Ben and thought maybe we could do brunch at mine, something Ben would have made for you xxx’

Another precious friend texts me every morning to ask how I am and prays for us every single day. That same friend, in the weeks after Ben died and when I rarely slept, sat in her car outside my house and waited until she saw I was active on WhatsApp. She then sent me a message to see if I wanted company for a coffee – this was at about 5am!! She simply sat and cried with me.

Another still phones me almost every day to see how I am and is never offended when I don’t answer. She created a beautiful scrapbook cataloguing each day in the month following Ben’s death, knowing it was so surreal that one day I would look back and wonder how I actually survived it!!

Yet another meets me for lunch at the drop of a hat. She drops little gifts or flowers off on my doorstep, gave me vouchers to have my nails done and took me for a spa treatment (important things that actually really do make you feel better!!). She is completely non judgmental and regularly writes the most wonderful encouraging messages.

Another knows I love pottery and commissioned a set of handmade mugs to be specially made for us with Bens wave/mountain/river tattoo incorporated in the design.

I could go on and on. These beautiful people keep us going and help us to stay strong. They don’t have or need wise words because they know nothing they say can take our pain away. They are simply there. They invite us for meals, they keep us company, they suggest going places!! They know that life often doesn’t go to plan – that bad things happen. The only thing that makes sense is that we can choose how we use our pain. We can reach out and show kindness to each other or we can allow bitterness and anger to set in and destroy us. It’s tempting but I don’t want that!

One thing I know for sure is that I’ll never again be the person I was before Ben died. A light went out when he left us – yet something very special remains that we will cherish forever. We have twenty five and a half years of the most priceless memories that nothing or no one can steal. I’m so grateful for every single minute. Ben is a wonderful gift and his legacy will live on in us all for the rest of our lives.

I know the journey ahead is going to be rocky and there doesn’t seem to be a set pattern to follow. I already look back and wonder how we have managed to get this far – but we have! Everything about grief is unpredictable and I don’t know from one day to the next how I will feel or what triggers will catch me unawares. I struggle with my faith in God because it feels like he let me down – yet I believe the God I’m angry with is the same God who holds me up. I’m choosing to hang on to hope and to allow Him to be part of my pain and suffering.

I can choose to block God out or I can choose to let him in and pray that he will give me enough strength to find joy in living again.

One dear friend whose 22 year old daughter died eighteen years in a similar way to Ben ago tells me that it doesn’t get easier but you do learn to live with it and thankfully the memories stay as fresh as ever!!

Megan Devine (Refuge in Grief) whose partner drowned, writes…

‘Love with open hands, with an open heart, knowing that what is given to you will die. It will change. Love anyway. You will witness incredible pain in this life. Love anyway. Find a way to live here, beside that knowledge. Include that knowledge. Love through that. Be willing to not turn away from the pain of this world—pain in yourself or in others.’