Gone upstairs

a personal journey through grief and change


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Sister to the rescue

The challenge with revisiting the days leading up to Sam’s death is to remember them as they were at the time when we had no recognition of what was coming or how long we had. We simply stumbled forward blindly, doing what needed to be done, going with the flow and responding to the needs in front of us.

To say we found amazing grace as we did that may sound trite, but for me it was true. I have an inbuilt response that numbs my feelings in a crisis. Martin with his medical instincts and general anxiety levels undoubtedly suffers more at first and then adjusts later. But I think we can both say that through those weeks… we coped, we felt held.  Of course when you are in the middle of something the body’s adrenaline kicks in and somehow you keep going, but we also had certain levels of peace and acceptance and knew what to do: we were carried.

None of that necessarily happens in the revisiting. Looking back from here, the shadow of inevitability lies heavy on the path, oozing sadness and regret. There is no grace for me in looking back on any part of our long journey, anymore than there is in looking ahead. I cringe when I read my old blog posts! I don’t know how we managed the months with Jessica or the media coverage. I realise that many of the things that made our story public knowledge would not have happened if I hadn’t been blogging about our journey! (And here I am doing it again – oy vey!)

But that is why I want to look back now, to prod and probe, to see through a clear lens, see it for what it was rather than shrouded in a haze of drama and activity. I want to get a better handle on what actually happened and where Sam was in the middle of it all – and how I felt and feel as his mother. I have been numb for so long, protected by anti-depressants, unable to access my feelings. That is of course a blessing and relief, but to be honest I also feel guilty that my response to the loss of my son is so cool, so measured. The ending of a 5-year anxious wait is undoubtedly something of a relief when it comes, but the loss, the LOSS, of who he was and should have been had been going on for years. That is what comes back to strike us to the heart. That is what we grieve over – all that promise lost.

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He was a lovely little boy but we know we lost that little boy a long time ago. No-one’s sweetly remembered childhood is ever coming back – there’s nothing we can do about that… other than have grand-children!  He grew into a withdrawn schoolboy and self-sufficient teenager with his own particular obsessions and amidst the busyness of family life it is hard to pinpoint when he began to slip away from us.

We don’t know, for instance, how long the tumour was growing before it was discovered: it must have been very, very slow to have reached such a size with no symptoms for years. He lost his joy and life, adolescence happened and we moved to the Midlands; he hated school in Loughborough and the internet took over… You don’t realise it is happening at the time and I heard his version of events much later. Surely this is a story I have told before… it feels like a damning summary of my failed motherhood. It was quite amazing how the years of illness made way for confrontation and reconciliation between us.

Of course this process happens in most parent/child relationships, but I don’t think Rebecca ever lost that very special sibling connection between a big sister and her little brother.  As someone said recently, there are no memories of her childhood in which Sam does not figure: he was her compatriot in the land of childhood, her closest playmate. Appropriate then, but all the more painful, that she was the one who discovered him in distress on Saturday 15th November 2 years ago. I was on a train back to the Midlands when I received a text from Martin: “Becca has called an ambulance for Sam. Ring her”

Sam’s sister had been staying with friends in Loughborough before meeting up with us. She hadn’t seen him for a while so that morning decided to surprise him. But when he eventually managed to answer the door, he was in some distress and disarray after stumbling downstairs. He simply said, “Help me, Becca” 😦 😦

The pathos of this moment is almost too much to bear. Sam, who had been so strong and determined to ‘beat this thing’ finding himself overwhelmed by his own body and his sister catching him in her arms, wrapping him up and sitting him down before calling 999 and then her father. I was miles away on a train while my 2 children faced this alone.

But if I had been there instead of her? Would he have asked me, been honest with me? Would he even have answered the door? I don’t know – he had done so much to protect us, his parents, from anxiety about him. He hated us ‘snuffling around’ his life! Perhaps his childhood friend was the best person to arrive at that moment. She could see straight away the change in him, whereas we had been living with a slow decline and may even have missed it. She could see he had left-sided weakness, that his arm hung limp and his leg wouldn’t move properly. There had obviously been some sort of growth or bleed in the tumour resulting in loss of function on the left side. But Sam himself didn’t seem to be aware of it: he apparently also had left-sided visual inattention so to him that side of his body didn’t exist!

Martin and Becca decided to cancel the ambulance. What good would a trip to hospital do? What could anyone do for him? He wanted to be in his own home. It wasn’t a life-threatening event yet: this was the progression we had both expected and dreaded. So I made my way to Loughborough as quickly as wheels would carry me. Martin who had so recently returned from France to a weekend on-call, left his patients and came too. We all convened at 8c Park St and soon the 4 of us were together in one place, hugging each other, assessing the damage and deciding what to do next. Being a mum I cooked a meal with the few things I found in his fridge. Being Sam he snuggled up on the sofa with his cats and family around him and asked us to stay. We made the usual jokes and decided to settle in for the evening and watch ‘The Lord of the Rings’ trilogy again… What else would the Dyer family choose to do?!

As I write, 2 years ago at this time that is what we were doing – looking after our son and brother, supporting and comforting each other, with no real idea of what tomorrow would bring  – while watching the brave hobbits on their impossible journey to defeat evil.

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A lover of the light

It’s the little things that count. Well, I’m sure the big things help as well!  We have recently had some majorly encouraging family occasions… Had our bedroom redesigned and decorated within the space of 2 weeks, which was really gratifying and unexpectedly easy… I didn’t really plan it, it just happened – one of those doors that you push a little and it flies open 🙂 Plus there is the major event of a holiday in Sicily next week that only came together because we took up a friend’s invitation to visit Calabria in August and met some new friends… One thing leads to another. Perhaps it takes me looking at my life to actually see the shape of these huge gifts.

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BUT… on a daily basis, when there is stress about the painter and the mess and booking accommodation on an unknown island, or the ongoing concern of being parents and grieving parents at that – it IS the little things that count. Small pleasures give my heart a lift and bring satisfaction and purpose. It can be an encouraging text from a friend: one says ‘Let’s have a phone call’; another writes about walking in London and makes jokes that go back to schooldays. It’s good to feel loved.

But those happenings are random and I have no control over when they happen. I do have a choice about making time to do things that lift me. As one notebook I bought says, “Do more of what makes you happy”. Feeling happy is a real issue when you are depressed. The medication helps keep your mood on an even keel but there’s a dullness, like being wrapped in cotton wool. It’s not as bad as when I was taking prosac, but it’s still there and when I look closely I quickly find myself in tears. The truth is my heart is bruised and wounded and needs healing. Looking at it, talking about it, that is all part of the healing process and must be done, but it takes time and professional help and it hurts. There are still a lot of tears to come out. I just have to walk the journey – and accept I am sad.

Meanwhile, finding daily grace is the key. How can I approach each day – where is sustenance to be found? I sit, I try to pray – there are no words but that’s OK. I choose to believe I am loved and held even though I cannot feel it. Sometimes I find a couple of lines that help – a quotation, something on facebook, a verse of Scripture. Most of the time I attempt to smooth out a path through the day by planning what I will do, listing what needs doing today. That at least gives direction and purpose.

But joy, lightness, positive thinking? Creativity that lets in the light? Hey, here’s some writing… but that doesn’t happen very often. I’m still wanting to make time for some more painting – maybe today!? But recently, as I said on a previous post, its my photographs and the rediscovery of the (mostly) daily routine of posting on my photo-blog that’s bringing joy. Hurrah! I have recovered the impetus again – the drugs must be working! 🙂

Funny that because photography is all about accessing and using light. I am a lover of the light – I have always carried a camera: I love beauty and colour and nature and architecture, beaches and skies…also capturing moments, holding onto friends and family, making memories that will last.

So in 2013, when my writing about Sam’s journey dried up, among other new blogs at that time I decided to launch A lover of the light  (thanks to Mumfords for the title) and started sharing from my archive of thousands of pictures, not in a random order, but following each one with another that ties in to the subject or colour or form – or just my memory of the place and occasion. Just pictures, no words, a rolling gallery of beautiful shots.

I don’t take so many pictures now. Of course storing them becomes problematic and editing them all is a time-consuming chore. But once tweaked and stored in a special folder I have a select group to chose from. This practise takes me back into the beloved archive of memories surrounding them. Every time I do it light shines on me from another time and place – islands and holidays and adventures, or just my own country or hometown. They are places I love, seen at their best. The sense of bringing order, the satisfaction of creating something beautiful as I see the column of posts unfurl and smile at the choices I made to place THAT one after THAT one – all the way back to the first post 4 years ago, a view from a back window of our old house, Bricks and Leaves, autumn colours, russets and rooftops. There is still pleasure in it: light and colour, composition and that ‘rightness’ that artists seek 🙂

First thing this morning when I chose my 629th photograph, a red fishing boat to follow a beached dinghy in black and white I smiled at the contrast yet similarity. I remembered that day on the shingle beach somewhere on England’s south coast… a place for a family reunion, a meal in a pub, a beautiful day and Sam with his hair half-grown after radiotherapy reclining on a towel talking away as only he could to his sister… There is so much behind a picture. I wonder whose boat it is and where it is now…? The thoughts lead in different directions, but they are good thoughts.

Come holy light and shine on my heart… That’s a rather special picture I posted last week when I was just finishing off a run of sunsets 🙂 Thinking up the title is part of the fun – just a few words to put things in context. My ‘poetry partner’ Ray has even composed a poem out of titles I have used on the photo-blog! I will have to post that on Ray & Redhead – another blog that stumbles along – and link all the pictures he mentions: ha ha – a nice project for a wet weekend.

Welcome to my inner world. Despite the continued walk through the valley of the shadow of death I am still a lover of the light and it really helps.

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Being brave

It’s the 25th again. It  takes a date to make me write – as if I can measure the journey by these milestones. 17 months today since Sam died. I thought it would be getting easier but it’s getting harder… How can it get easier when he’s always gone, instead of living his life, coming up 29 next month, maybe working, getting married, being a father? It was not to be.

I do accept that – I really do. His tumour made a normal life impossible and what he was living was a torture day after day, a fight to keep his head above water, to keep hope alive. Now at least he can rest in peace. Nothing can take away what was and all the years we had with him. The memories don’t make me sad – the photographs always bring a smile. No, it’s the future that is lost that I grieve.

Not that it is that well-defined: it just feels like a heavy weight, a physical illness, a hopelessness – a hole in the space-time continuum. I am depressed. I can find no joy or purpose in life, no energy to engage with anything. I can’t really tell you why or even specifically relate it to losing our son, but others say it’s the weight of grief, the pain of the wound in my heart, throwing everything out of kilter.

I tried to be better. I reduced my Prosac as Spring approached – I thought I would feel positive about our new beginning and that I was ready to face the pain instead of retreating from it. I wanted to feel my grief – wanted to cut through the numbness. I thought it would help, but when it came to it I couldn’t cope. As the effect of the long-term anti-depressants wore off frightening feelings came to the fore: irritability, tearfulness, anger. It was hell. The doctor agreed we would go back to the original dose.

Now the old house is sold, we are relocated, we have a new home and it is my new project. Surely I am ready for what comes next? I am planting a garden – I want to look forward! Yet each day I wake with aches and pains in my limbs, have to steel myself to face the day, plan a way through. Don’t get me wrong – I am SO grateful: we are truly blessed in many ways. We have an amazing story of grace, love and faithfulness and everything we could possibly want or need. I know that all is well, all is well and all manner of things will be well. Part of me is fine… it’s just these feelings, or lack of feelings, draining my life force, painting everything pointless.

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So I continue to fulfil my supportive role for my busy husband – housewife superstar. I am so good at being responsible – or at least afraid of not being. I couldn’t let the house go to pot or the bills unpaid – I’m not that ill. Somehow keeping up with the ironing and hoovering up the cats’ hairs, organising his clothes and planning trips, helps me feel I am doing something useful. In fact it seems our lives are as busy as ever and to be honest it is exhausting – but neither of us know how to stop doing the next good thing to do. Surely seeing friends, going to concerts, fulfilling family obligations are positive, nourishing choices…? Shouldn’t these make us feel more alive, as if we are making a contribution to the world? If I do nothing I will die of boredom!

So I do it all… and when I stop to look inside I wonder why why why?  I am not sure how to enjoy life anymore. All I want to do is hide – stay in bed, read trashy books, sleep if I could. Which doesn’t help at all! Go swimming, go outside – at least get dressed! Keep going through the motions even though my heart and soul are numb. When will I feel like doing something again – when will I feel that life is worth living? I live because my husband and daughter need me.

“I remember when I used to lead the congregation in procession to the house of the Lord” Yes, David – Psalm 42. I do remember that and it feels like another person in another life. Who am I now? Can I have hope again? I cannot write, be creative, produce anything, contribute anything, without some supernatural energy rising within. I need reviving! And so I wait… I wait for the Lord. Despite all these negative feelings, my lack of joie de vivre, I do still believe. My faith has not altered: God will bring it all to good. “My splendour has gone and all that I hoped from the Lord…yet this will I call to mind and therefore I have hope: because of the Lord’s great love we are not consumed” Lamentations 3 – the weeping prophet knew a thing or two.

This is real life – facing up to death and grief and loss. None of us are going to escape these things! This is how it makes you feel. Yet – I will hold on hope that there is always a way through with Jesus.