Gone upstairs

a personal journey through grief and change


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Dying no more

It was when the nurses washed him that his breathing changed. We were all in the kitchen while they did the morning bed-bath, but I peeped through a crack and saw my beautiful naked son being gently washed in the way I had been taught as a student nurse nearly 40 years before. A minute later they covered him up and called us into the room: “His breathing’s changed, you should come in” Was this ‘it’?

We all swap places – the nurses leave us round his bed.  Becca and I stand on Sam’s left, Martin and Sam’s grandad on his right, holding his hands and arms. His eyes are closed, his face composed, but he is definitely struggling to inhale and exhale. How hard to let this process run its course – how can this be happening? Hardest for the medical man who had been trained to bring people back from the brink… But Sam has a red sign in the kitchen saying “Do Not Resuscitate” – the brain we cannot see has already done it’s fatal work. Despite that fact we speak  our love and comfort to him, not knowing if he can hear us: it is our only way to say goodbye.

Within a few minutes his breathing stops… “the breath returns to God who gave it” “Into Your Hands we commit his spirit”. His pallor gradually turns to blue, then purple – there is no oxygen in the blood but his strong, young heart is still pumping it round his body. Oh God! It is too much – his head and shoulders rear up from the bed and we all jump. Martin says, “Don’t worry that is normal” – death throes as the body relinquishes it’s life, so horrible to see it is still the worst moment of the whole thing. He falls back to the bed lifeless and all colour quickly fades to white, then waxen…

Dying is nothing like death itself. Dying people are still with us, but death means GONE. It is a totally different feeling – even though you know it is coming you cannot really prepare for it. Sometimes people talk of heavenly experiences, feeling there are angels in the room to guide the loved one home, but for us it wasn’t like that at all: Sam’s death was traumatic despite his unconscious state. The hands we continued to hold went cold. Rebecca in her terrible distress immediately left the house to go and cry in her friend’s arms. Martin’s dad went back into the kitchen to make tea. I looked at my watch, to know the time of death…

We all react in different ways. I am sure Martin was weeping. I sat very close to the bed and put my cheek on Sam’s. It was cold and the skin had changed: he was a corpse. I whispered my love one last time, but there was nothing to be done: Sam Dyer had left the building. We relinquished his body to the nurses for laying out, dressing him in his favourite tee-shirt and shorts for his long sleep in the earth.

I was numb: now there were things to do. I went straight to the funeral directors to get advice and organise what had to happen next – but I’m not going to write about that now. (See this post for the overview I did write one month later when at last I felt able to communicate something.) I left Martin waiting with the body for the doctor to come and certify the death. When he came our lovely GP cried over the loss of a young man who had been so full of life…

That was the question uppermost in our minds: What had happened to all that life? That strong spirit? HOW could it just be snuffed out because it’s container had worn out? Surely we believed he had gone into the spiritual realm – to meet God?  But what actually does happen when we die? Where was Sam now? It made me cringe when well-meaning friends said things like “he is safe in the arms of Jesus” – it seemed so unreal, wishful-thinking, imagination, generic gobbledygook – no comfort at all. It doesn’t say anything like that in Scripture! However, something that really did help, was someone who didn’t know us at all who had been praying for us – how amazing is that on its own? – who had a vision of Sam drumming his way into heaven with great joy and gusto! She had no idea he was a drummer… I loved that! 🙂

It is all so much a matter of faith in things unseen, convictions being tested at the point of crisis. All we really knew for sure was he was and is no longer with us… But we refuse to use words like “passed or passed over/on” “gone into the next room” – yuk! things that take the finality out of this loss. It has to be called by it’s name: DEATH.  St Francis called her Sister Death – a close companion through our lives, a friend who takes us in her arms at last, a rest after a weary, long day. And we admit Sam’s death was a release for us as well as him.

In fact we do not begrudge the timing, his young age. I’ve blogged abut these last 10 days because they were so amazing and full of grace. It was a good death! He lived his 27 years to the full and had many great experiences: he used to say so himself. He told his sister to say at his funeral (and I quote!) “Fuck you, I went to Hawaii!” – which of course she was delighted to do! He also used to say he was actually glad all this had happened because of all the good that had come of it – the healing in his own life and in our family! Acceptance has to come if there is to be any peace in life  – and in the end it is all about this, from Fr Richard Rohr:

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At the time I needed something to hang onto and the gospel story about the thief on the cross next to Jesus came to mind. As they were both dying, this man said to Jesus, “Please Lord, remember me when you come into your kingdom!”  and Jesus’ immediate response to this wicked man – who had simply acknowledged that He actually had an eternal kingdom and nothing more – was “Today you will be with Me in Paradise” Sam did acknowledge my Jesus, despite all the other paths he also took. Apart from that I know that my God is Love and that definitely includes my children as well as – in fact – I believe it includes the whole world. Unless someone downright refuses, they are given access…I cannot help believe Sam is ‘in’! As a wise friend said to us later: Sam is in our future

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“Goodnight, sweet prince, and flights of angels sing you to your rest”

My son is dead, long live the memories – my baby boy, our cheeky little lad.

I cannot list the precious moments that I treasure in my heart: “My mummy, my best thing” he said at nearly 2 – “I love you mum” he vowed before he died.

Now he lives on, his childhood laughter, mimicry and humour, that quirky character and stubborn will – his face in photographs and dreams, held in our hearts.

 

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Our son is dead, long live the legacy – our drummer boy, so totally unique

His struggles and the anguish of his youth, a life cut short, the battle that he bravely fought out in the public gaze, his words and love and courage stamped on many lives.

They still live on – online, on You Tube, TV and in print – a shooting star that blazed across the sky and fell to earth.

 

My son, my dearest Sam, is dead – long live the LOVE

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Saturday

On Friday evening Sam turned up on our doorstep in his coat – he’d just probably been to the cinema to actually see Hunger Games 2. We didn’t find out as he was only there to deliver a terse message: “I want that bed moved out of my sitting room!” The irritability was to the fore and we were definitely personae non grata! I soothed him with what I guessed would be a fair deal” “Let’s wait until Sunday, and if you still feel the same then of course we’ll move it”.

Perhaps it was a wild guess rather than a calculation – we only knew that he wouldn’t stay as well as this for long. We’d actually asked a young friend who’d received cancer treatment and steroids to talk to him about taking them, perhaps persuade him it would be wise…? But whatever she’d said it had made him even more determined not to… Oh well – at least he’d stop being so horrible to us soon! I had to go and relieve the night staff again on Saturday morning and didn’t know which Sam to expect!  But it was fine: he did actually quite like being looked after – on his own terms!

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But Saturday 22nd is memorable because of what Martin did.

For nearly 6 months Martin and I had been living in the rented flat in Leicester during the week so he could walk to work and coming back to the community house at the weekends. About once a month – or whenever we could arrange to all be around together – we would have a household meal: November 22nd had been in our diaries for a while and Martin had offered to cook.

He decided that morning to do his signature dish of roast lamb with garlic. I can’t remember what I was doing – probably laundry and checking up on Sam – but Martin spent most of the day preparing the feast 🙂 Sam was much on his mind, of course, and he felt the meal should be a celebration of his life. He placed 27 tea-lights around and above the table, one for every year of his life. The lamb was a reminder of the Passover meal – and we realised we needed to drink the wine…

On January 29th 2010 the first person who had come to visit us after hearing the diagnosis – Grade 3 asterocytoma, probably 3-4 years to live – had brought a bottle of wine intended for laying down – an expensive bottle that could be kept and would improve with time. It would last for some years – but Rich declared that Sam would last longer than the wine! It was a statement of faith and hope, lifting our eyes and spirits out of despair. We kept it on our mantlepiece – we’d kept it for 4+ years so far – as a constant silent declaration.

But we knew the time was rapidly approaching for us to let Sam go. To continue to pray for healing was both unrealistic and unkind: I actually asked the church NOT to pray for healing because there is no doubt that when we pray it has an effect, even when we don’t see a complete reversal it can relieve symptoms and prolong life: we have seen it before. But Sam was not going to recover from this: it would not be ‘faith’ to pretend he would – but he was still going to outlast the wine: we would drink it! We decided to use it in a household communion prayer before our meal and invited Rich to join us.

Just a small circle of friends, but such a precious few moments: thanksgiving to the One who went before, conquered death, showed us the way and opened heaven. We prayed for Sam and committed him into God’s hands – his body, his life and his spirit. We ate the bread and tasted the wine and knew the peace of heaven. It was so right. When there is nothing more to be done we fall back into God and the promises of life forevermore.  Surrender is faith.

The meal was poignant and wonderful. It was the high point of our fellowship as a community, as if this time was what this strange mixture of people – and the lovely baby – were together for. The support of these friends who lived in our house meant more than we can say. We kept some lamb and wine for Sam…

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The film buff, not content with Hunger Games, had gone out for the evening with Dean and a few other to see The Imitation Game. It was games all the way for Sam… He came into the room with Dean in a state of excitement, having been completely inspired by the life of Alan Turing. We don’t know how he managed to watch the film with only one eye and one half of his brain working, but he was exultant: “I am just like him!”

Happy Sam made his way home to meet his night watch-women, while contented and full-hearted the residents of Burton St made our way upstairs to bed.

 

 

 


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Sam back in charge

Soon after settling Sam in his “new” home I’d left him with Becca and some friends who turned up. The thing was, he couldn’t be left alone, even to sleep – we didn’t know what might happen. This probably didn’t make any sense to him, as he couldn’t remember the times when he’d lost consciousness in hospital… but I don’t remember him complaining and at 10pm when the night nurses (miraculously!) arrived he didn’t object. They sat in the kitchen at the back while he slept in the front room. They would have helped him onto the commode or cleaned him up if he needed it, but once he got home he was no longer incontinent and managed to walk and support himself the few steps to his downstairs loo. The commode was never needed!

img_2824At 7am on Thursday 20th November 2014: I went back into 8c to relieve the night staff. Here is mum to feed you, son… what can I get you? How are you? And he was well and happy, loving being home with his cats. He struggled into his old dressing gown and even let me take a photo…”Look everyone, I’m still standing!” I don’t remember if he actually ate anything and no idea how he felt…we were fast approaching the point where I was to ‘go away and let me look after myself, please’… though he did appreciate the help I could give fetching and carrying. He continued to completely ignore his left side and just work round it.

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It must have been that morning he told me he’d been on the phone to Dean and his healer had got 10 others together from around the world to “chop up his tumour and send it away”. I don’t know much about psychic healing so forgive me if I am sceptical. All I can say is it gave Sam hope – or is it that brand of ‘faith’ that is simply a mask for denial? We Christians see enough of that so I can hardly point the finger 😦

It must also have been that morning that he told me he didn’t want to take the steroids anymore… Oh boy. Sam was back in charge and he simply didn’t want any medical intervention! I tried to persuade him that it would be stupid to stop them suddenly and he should do it gradually and he agreed to take half the dose. Getting those last 2 pills down him that morning reminded me of his very last dose of temozolomide on the last day of radiotherapy at Easter 2010: he was doing it against his will and only to stop me nagging… 😦

We knew this would have a very negative effect as soon as they wore off. It was only the dexamethasone that had brought him back from the brink and he would soon find the symptoms returning. How long did we have? It might look as if he could go on and on – how did this happen after nearly dying yesterday?! – but it was Becca who had found a web page that said with young brain tumour sufferers they could be walking around and dead 2 days later. With other cancers the organs gradually shut down one after the other as it spreads through the body, so it is more gradual. But brain cancer doesn’t spread into the body: the blood brain/barrier both prevents this and stops conventional cancer treatments going the other way. So there is just the brain to shut down – and of course when that happens…

On the other hand, we were aware that one of the side-effects of steroids is irritability and mood changes. Sam’s grumpiness the previous night – and what was to follow over the next 48 hours until the dex was out of his system! oh dear! – could well have been due to that. Or not. The lad had a massive brain tumour – of course it was going to affect his personality… 😦

We were getting on quite well when a couple of nurses arrived at the door. They had come to assess his need for nursing care, bless them. Apparently 2 others had come the evening before and he had sent them away! And that is pretty much what he did with these 2 as well… “What do I need you for?” “Help with getting to the toilet and washing…?” “I can do all that myself!” He obviously didn’t remember anything from the hospital!  But this time I was there…

I say – rather forcefully, rather crossly – “OK, Sam. If you can do it yourself, get out of bed, go upstairs and take a shower!” He throws off the covers and pulls himself to his feet. He holds on to the bed and gets himself to the foot of the stairs. The 3 of us watch as he puts his weak left leg up a step at a time and uses both hands to  pull up the banisters… (well it must have been just the right as the left was useless). He reaches the top and we hear the water running… What a stunning display of stubborn willpower! I tell the nurses I will call them back when we need them…

That is not the only shock of the day. 20th November Sam is not the same as 19th or 18th or 17th November Sam: he is now master of his own destiny and means to prove it to us. As he finishes showering I call upstairs, Hey Sam, while you’re up there find some clothes and get yourself dressed! He does! He comes back down and sits on his bed – surely exhausted? He puts his head in his hands. I say, OK, well done. I think I’ll just leave you for a while then: I need to go back and check on Becca – she’s pretty tired after spending those nights with you on the ward.  I leave him alone.

Back on the top floor at Burton St I sit on Becca’s bed and tell her what’s been happening… (This is when she told me about the website information: don’t be taken in by it, mum.) I say, I’d better ring Sam and see how he is. He answers the phone – to answer at all is pretty unusual for him actually… “Hi Mum, I’m on the way to the cinema” !!!**&%$***!!! WHAT??

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The film he wanted to see wasn’t on until the next day, but he said he’d just wanted to prove he could do it. He did in fact return to see it on the Friday: it was one of the Hunger Games films. Must have been part 2. By Friday I’d given up keeping watch. Becca also commented that if he was going to do this sort of thing she was going back to Brighton – which she did on Thursday afternoon: “Call me when you need me Mum”. 

Our roller-coaster was flying along and we could barely hold on. I don’t remember which friends came round or what I did for the rest of the day, but he was obviously able to manage without us. Fortunately he was still willing to have the night nurses to keep watch while he slept, which meant we could.

One other thing happened: at about 9.30pm our lovely GP turned up on our doorstep. He’d just been to see Sam and spent 40 minutes trying to persuade him to continue the steroids – with no success. The 3 of us sat in wonder at the determination and sheer wilfulness of Samuel Dyer. He was right really, it was what had got him this far and why shouldn’t he continue this way? He believed in himself and the path he had chosen: he had faith…imgp5960

On Friday 21st November Martin and I had a day off. We visited Sam in the morning, but then each went out for lunch with our friends/mentors and tried to catch our breath. So tomorrow, Monday 21st, I will have a break from blogging and take up the story again on what was Saturday 22nd November, which this year is Tuesday. Thanks for reading! x


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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.