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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Into unconsciousness

Monday 24th November – the day Sam began to leave us. These last 2 posts are going to be pretty hard to write… Over the last week the blogging process has done its work in me, uncovered buried anger and enabled those  suppressed tears to flow. Looking back at my lovely, infuriating son has been both a pleasure and a pain – but now I must say goodbye to him once more. The end of Sam’s story is unavoidable – none of us can escape death no matter how long we defy it.

I think that is partly why I want to write about it – to force other people to look it in the face, accept reality and their mortality. We live in the one part of the world and the one time in history where we do not have to face it regularly so we almost forget it is there – something to be considered and planned for – until someone close to us or perhaps someone famous dies. Death horrifies us and we fear it – even those with faith in life beyond seem to avoid it at all costs. Sam was not afraid, though part of him was still defiant and in denial – he was ready to go into Spirit, as he would have put it – or even just to go to sleep if that was all there was. Of course he wanted to live, to follow his dreams and fulfil his potential… isn’t the loss of all that the problem, isn’t that what dying is all about – letting go?

We had to let go as well. On Saturday we had committed his spirit into God’s hands and now we had to go through the process… It was the last night of the nurse watch-women – they only cover the first 5 out of hospital. I don’t think they reported anything different when I arrived, but I soon foundimg_2833 that Sam had a bad headache and felt sick again. He was really suffering and I knew it was time to call the emergency number for hospice at home…

The nurse arrived quickly and set up her station in the kitchen. She was kind and efficient: it was a relief. I was sent to a local chemist in a backstreet somewhere to collect a pile of controlled drugs while Martin sat with Sam. He wasn’t talking much, but that must have been when he said “I wanted to show you a man who defied death” They were, appropriately enough, his last words to his father.

Martin phoned to call his own father, brother and Becca back to Loughborough but it would take them 4 hours to arrive. When I got back with the medicines the hospice consultant had arrived as well – the little house felt very full. I sat down next to Sam and held his hand as he waited for relief. They were drawing up morphine and an antiemetic to give him when Dr Feathers called through: “We can give some steroids as well if Sam wants it” Sam heard that, looked at me and forcefully delivered his last words to me: “No Dex!”

img_2834I went into the kitchen as the syringe was administered, into his left arm. He could obviously still feel on that side because he complained loudly when the needle went in! The morphine quickly had an effect and he seemed to go to sleep. I sat down with him again. It wasn’t long before I thought I would check his pupils – I don’t really know why. He was peaceful, breathing, looked comfortable. But I found his right pupil fixed and dilated while the left one was small. Immediately we knew the tumour had bled once more and this time fatally: his brain had given up – he would not wake from this sleep again.

The saddest part was that Rebecca had not been able to say goodbye. He had called her on the previous evening but she had missed the call and Sam was already unconscious when the family finally arrived. Not that any of us actually said goodbye: Sam did not know what was happening and simply slipped into a sleep that took him all the way down into darkness… or light?

When is the moment of death? He was still breathing, his heart was strong. We had to wait for final breath and heartbeat: our vigil had begun. Of course it all seemed unreal. Dad and Richard were in the kitchen with the cats and newspapers. The nurse called a colleague to lift him and turn on his side. Becca called a friend to come and we called our lodgers. Young Ben came to join us and wouldn’t leave… So much love and support, texts and prayers, grace and peace. Scamp sat on Sam’s bed and went to sleep next to his master’s legs.

I can’t remember the hours of that afternoon and evening. We must have eaten, talked together, sat and drunk endless cups of tea around the prone shape of our son. We talked to him, not knowing whether he could hear. The nurses were endlessly comforting as they cared for him. Eventually Dad and Richard went off to stay in a B&B and the 3 of us were left – with Ben, who refused to go home to Burton St. He slept on one of the sofas and we 3 squeezed into Sam’s bed upstairs.  I prayed we wouldn’t be in limbo for too long.

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Sunday

It’s Wednesday 23rd November, but I keep thinking it’s the weekend because it was…2 years ago. I am travelling in both time zones at the same time, re-living the emotions, seeing my son’s face in the air in front of me. This is what I wanted to happen – to bottom out some of the stuff I have ignored and find out how I really am. 2 days ago I woke upblogger realising I’d buried so much anger – for years, since childhood when my mother died and I just had to get on with life without one.  Anger was a fearful thing, not allowed… my father held all the rights on that one, losing his temper and shouting at us until that is all I can remember. I was saved when I was sent away to school… But I buried the cry.

So the motherless child also loses her son – plenty to be angry about! But no – I have accepted it. This happens in life – other people have a much worse time of it… of course they do. I have nothing to complain about, my life is blessed and I am loved. Grief doesn’t know this. Anger has to have it’s part – resentment that it isn’t fair has to be felt and acknowledged before it can be dismissed… So there it is: I can name it. I lost 5 years of my life to Sam’s brain tumour, worrying, trying to help, caring for him, being a servant and sounding board. He was often nasty to me – to us – resented us, blamed us… “You brought me to Loughborough and I hate it!” “You sent me to school!!” “You hit me!” – sorry, that’s what we were taught to do back then… 😦 “You argued with Rebecca and frightened me!” Sorry, sorry, sorry… that’s all parents can say. We can’t change any of it, please forgive us...

We were reconciled before the end. We were forgiven and forgave. Only now I recognise some of the cost to myself, but I bear no grudges toward him: to face childhood hurts is to grow up. I am not angry with God – but perhaps I am angry with myself…? Whatever it is, I choose to release that resentment, recognising that many of the choices I made were exactly that – my choices, me trying to make things better. No-one made me a slave to his suffering: yes, my life was forever changed, but it’s alright – I’m OK and I still have some life left to live…  Life isn’t fair and shit happens – get over it. Processing, processing, the little wheel is turning in my soul as grief works it’s way out… I see his face in my mind’s eye – the pictures I have posted here – and I can weep at last.

On Sunday we were getting very near the end – but we had no real understanding of that. I spent quite a lot of time with him – he was in a good mood, wanted to talk about The Imitation Game, what it was like to be so intelligent, socially awkward, misunderstood… Sam wasn’t gay but he felt ostracised for all sorts of reasons. I’m sure had he not had this disease he would have been brilliant at something: I’m also sure he would never have fit into society, had a 9-5 job or been in any way ‘normal’! It is so painful to me to know how he felt as a child, bullied, rejected as different – how he would hide in the library from the other boys and simply couldn’t accept the system. How could we know what was going on inside that brain when he didn’t tell us? When we moved to the Midlands he hated the Grammar School – which was opposite our house and we thought would help him achieve what he was capable of. He couldn’t stand the uniformity and ambition and tradition, the sports and forces afternoons… all those fees for 9 GCSE’s and an angry young man! Yet he found a way through it all and was at peace before the end: for that I am eternally grateful.

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He transferred to the local college for 6th form and eventually found a couple of friends who suited him far better – James and John. James had been to the hospital on the first day and back to the house a couple of times since. This is John, visiting Sam for the first time for 2 years. They were so happy to see each other! Sam used my computer to show John what he’d been studying about business and presented a small (but large!) hard-drive: “John, this contains everything I need to get my multi-million dollar business off the ground!” Maybe it did – he had been collecting material for long enough. Not many days later I put that disc in an envelope marked with his registered company name: AIRBORNE MARKETING, HEAVEN and it was buried with him.

Meanwhile, he hadn’t forgotten it was Sunday, the day of our agreement, and rather sheepishly said that actually this bed in the front room was rather convenient and cosy! In the afternoon he entertained another visitor from his regal position – a friend he hadn’t seen for a while who’d moved away. We’d done our best to let all those who had invested time in Sam and been close to him know what was happening and their visits and phone calls made those days really special. We had always hoped and prayed that when the end came he wouldn’t be reduced to a wheelchair and dependency as so many with brain tumours are – that it would be quick and painless. But this way was the best of all – long enough for family and friends to see/talk to him one last time, long enough for us all to adjust…

I was a lovely day – reminiscent of the Sunday a week before when we had all sat watching Lord of the Rings. The roller-coaster had made a few climbs and dives in between! Now it was approaching the end of the ride. That evening was an extraordinary precursor to the finale, as Martin came in to spend the evening with his son and I went home to bed.

Their relationship was never easy – the father working so many hours. He adored his little son, full of character and smiles, obsessed with ‘muke’ and later Star Trek, computers when they arrived. He would do anything for him – but despite that the resentments grew, as they always do in teenage years. “You are my father, not my doctor” – a line drawn at the start: so much pain for the impotent doctor. Yet the boy began to soften, open up, talk… and past issues were exposed and gradually cleared away: love triumphed! On this last evening he made room for his father on the bed and said he wanted to show him a movie…

The film was extraordinary: The Diving Bell and the Butterfly. It is about a man in his 40’s who has locked-in syndrome: he can’t move any part of his body except one eye, yet his mind is whole and well inside. He wrote the book by blinking his eye to communicate. He dies in the end with his father standing by. I haven’t had the courage to read or watch it yet, but Martin said he couldn’t believe he was lying beside his dying son watching a father crying over his dying son… I’ll tell you now what Sam said the following morning, when Martin asked him why he had picked that movie?

“I wanted to show you a film about a man who defied death”


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September’s end

There are certain dates I love: 30th September is one of them. It’s that feeling of finishing in order to start again – totally false of course, internally constructed and completely self-fulfilling… Doesn’t stop me loving it, the drawing of a line, the tidying away of summer as we turn our faces to the bright, chill days to come.

For some years I’ve measured my life by dates – it’s how I’ve made sense of things. For instance, I know that today it is 5 years since we got the keys to the house we bought for Sam. That was a big step in the journey with him: it was his home for nearly 38 months, before we moved a hospital bed into the front room so he could die there. After we buried him it was my first task – to clear it out, get it deep-cleaned and painted, ready to put on the market. It sold in June 2015 to a nice young man, which was totally appropriate. He didn’t know its history – it wouldn’t have been fair to burden him with our story. The dead pass on and the living continue.

Another memory, another marker. Will it always be like this? Is it the same for other older people who have let go of the first and second parts of their lives and entered the third age – those who haven’t ‘lost a limb’ as well, but just retired? There is always the choice between looking back and looking forward. When there is less time ahead than behind perhaps one’s stance changes. We all have much to learn from ‘Standing at the crossroads and looking – asking for the good way…’ (Jeremiah 6v16). You might call it learning from your mistakes – a chance to prioritise again, even if that is only by writing a bucket list!

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Apart from all that I am proud of my journey. It has been – as my counselling assessor called it last week, ‘One hell of a journey.’ I recognise it has been extraordinary – in the way we made it so public as much as in the things that happened on the way. Above all it is a tale of grace… It is still there, frozen in time on my original blog: when I look at it now I wonder HOW ON EARTH we managed! We were a reality-soap-opera!

And so it appears that this phase now is as much post-traumatic stress as anything else, recovering from the years of anxiety and managing fear and the terrible tension of gradual loss before the final physical death of our son. Our elastic lost its elasticity… But I’ve been improving and now I have given up taking my sleeping tablets. I feel better off them and mostly the night-hours have been bearable. But… last night I really didn’t sleep at all well 😦

Today I am tired. It is more than the disturbed nights, it’s the build-up of the general pace of life and how much we try to cram into the hours of each day, week, month… Yes, I am grateful – this has been a wonderful and busy summer and I could spend October just reflecting on it, enjoying it again, but that’s not how we roll: October is already brim full of new plans and travels!

Yay! life to the full – looking forward and taking every opportunity! Who knows how many more opportunities there will be? There is surely no time to waste when we still have so much seed to sow before we’re done… Is anyone ever really ‘done’ – surely when it comes to it, no-one who is not depressed really wants to stop living. No-one wants to die and most people are afraid of it – so ignore it, avoid it?

I wont let you do that because I have been dying by degrees. That is what change and grief do to us – teach us to surrender, show us we are mere mortals. Sickness does it too – or the death of someone we know. The cold wind of eternity blows by and we shiver, recognising that life is a gift, all we have is gift. It’s a time to ‘stand at the crossroads’ and make some decisions.”Maybe life is curious to see what you would do with the gift of being left alive” (Marc Cohn: Live out the string).

There are always choices to make, because we are limited, none of us can do everything: we are not God. We are programmed to need rest and food – they are such priorities that a lot of people in the world only get as far as meeting those basic needs! Obviously, we are the kind of people who find it difficult to say ‘No’… in fact it is another small death to refuse an opportunity. I know it is not a sin to be busy, but as Jesus counselled Martha, its a bad idea to become exhausted, upset  and distracted by many things. I know that in the midst of life and purpose and friends I have to choose wisely – to ‘lie fallow’ for quite a bit longer if I am to regain strength. I need to prioritise rest, BE-ing and ‘the better part’ that Mary chose (Luke 10:41-42) 

So we attempt to keep our balance on this cusp, this knife-edge of the year – the September/October divide – remembering the summer that has past, looking to the winter that is on the horizon, recognising there must be winter death in order to fuel summer growth and the rebirth of the year. We are human: body, soul and spirit. We live, love, suffer and die. Some of us get to choose what we do with the time that is given to us – some of us experience joy.

Here’s to life: what is past and what is to come. Let’s live well.

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Depression 101

I used to write – I blogged regularly and prolifically for several years. It was a necessary therapeutic outlet at a time of extreme need. In many ways it saved me. It was if I had been unzipped and all my innards exposed. Readers appreciated being included in our extraordinary journey and somehow I had the grace to remain that vulnerable. Words flowed from my heart then – I barely had to think about it. It stopped me exploding. The blog remains as an historical document of life with our unique son and his brain tumour.

Then he died.  The months go by and it is difficult to write. I feel as if I should – I have created expectations in myself and perhaps in others that this is the way to deal with the grief. I had even set myself up and diversified into a few differently themed blogs – but most of those branches have withered now. I had entertained dreams of being a writer. I was going to be a poet too, but my partner in crime against language has had to nag and cajole to get me to put pen to paper: I think he’s given up at last and our dual blog – though stuffed with good stuff from before – lies silent once more. It’s not that I don’t try to express myself sometimes in private, it’s just that there are no more words for the depth of feelings and it hurts too much. I turned to photographs when wordlessness proved easier but even that expression has begun to falter lately. I do still want to track with the narrative of our lives – this new phase we have now fully entered – but perhaps a storyline is a false creation employed to make sense of what has happened to us. I can’t see the big picture clearly anymore so maybe there is no story worth telling now? Or that could be the depression speaking…

Grief has stages – denial, bargaining, anger, depression, acceptance (said Elizabeth Kubler-Ross) – but they are not necessarily consecutive. I had little time for denial after 5 years of living with Sam’s diagnosis and his extreme determination to beat the prognosis, along with all the crazy choices he made. We saw him die and in many ways it was a relief. I went straight into overdrive and was fired by adrenaline and deadlines for 15 months – until the 2 houses were emptied and sold and our new life established elsewhere. Goodbye to all that.

Maybe that was my bargaining stage… I thought that if I got everything tided up and dealt with our lives would be set fair for the next part. The truth is my grief has been about so much more than losing Sam. That of course was bad enough. Sam was Sam, unlike anyone else, hardly ‘normal’ even before his tumour took hold, but he was our son and there is a massive hole – not just Sam-shaped, but son-shaped. I’ll never be the proud mother at his wedding or grandmother to his children – a whole future died when he did and as we go on without him it looms like a ‘what if’ shadow alongside our path. Totally pointless to think like that of course, but there it is.

Someone said the other day that a loss alone is one thing, but a loss upon loss is worse. That hit home because for unexpected reasons Sam’s death lands squarely on top of that of my own mother when I was 12 years old. Perhaps I never resolved that one at the time: my tendency is always to bury it and get on with things. It seems this time I am not able to do that – which is a very good thing in the long run, but excruciating now with double grief to excavate: loss of mother, loss of son. Loss upon loss upon loss… and I am in a hole. I am fully aware that along with Sam we have also lost our lives in our home of 15 years: it all had to go. Firmly attached to that – my identity and who I had become, my purpose – all I had been involved with there, my role in caring for him – and writing about it.

That took me a while to realise but once I was no longer too busy to write and tried to pick up where I left off I quickly found myself blocked. Or as I prefer to put it, the grace was gone. Instead of being wide-open and vulnerable. pouring my feelings onto the page, I wanted to hide away. It was all too raw and I was too angry… Surely this is a more normal reaction than the way I had behaved before, living it all out in front of an international audience, being the catalyst that got Sam’s story into the Mail on Sunday and onto BBC and ITV?! I fought it, but eventually had to accept the death – step back and shut up, curl into a ball and wait for healing.

The anger continues. I am angry with everyone who has or is a son in their late 20’s who is doing well, anyone who has kids or is a kid getting happily engaged, married or pregnant, all those who are proud of progeny doing well at work or enjoying their grandchildren. Even writers in full flow! Facebook is hell. I know it’s not their fault and I wish no-one any harm: I deliberately bless them. God forbid others should have to go through what we did. My reactions make no sense – don’t ask me to make sense.  And at the same time I am also depressed, properly depressed and anxious: mentally unwell.

We are both inherently anxious, in that way you can do nothing to calm, because for so many years before Sam died – even before he was diagnosed – we lived with uncertainty. He was unpredictable and difficult – and then given a terminal diagnosis for ‘sometime’ in 3-4 years. Human minds can only take so much. I think we did quite well but what we have now is a form of post-traumatic stress.

Severe depression runs in my family anyway. This particular illness obviously has a specific trigger: I accept it as a necessary part of grief. The doctor is helping – “The prosac isn’t working so well, let’s try some new medication” That is a challenge in itself but she knows losing a son is a long-term/lifetime issue and is not going to go away. Ever. I am told I am still ‘doing well’, considering all this going on beneath the surface… but I do feel I have become a different person. I don’t want to do the things I used to do – I have no energy for them, no desire. Not wanting to write is one of those things – though I do seem to be doing that right now! What can I say – this came to me in the night.

It’s because an explanation is needed – for myself, to assuage my own guilt over false expectations!  I need to set the record straight.  How often do we extrapolate into the future, assuming things will stay on an even keel? How often do we set ourselves up, as I did? “I have stored up enough for many years, let’s enjoy it – eat, drink and be merry!” “You fool, tonight will your life be required of you”. We never know what is around the corner: a cancer diagnosis, an accident, a redundancy…  I have been humbled and that’s the truth. I am not in control of my life or of my own health: all I can do is choose wisely for now, for today – the next right thing.  Yes, actually, even having said that, long-term, I do still want to compile my book…I have something to say, something worth reading. But it has to be “maybe, one day, when strength rises again. If it does”. For now I am a fallow field.

Depression means I don’t care that much. I am not as sociable or extrovert. I am tired – I have insomnia. I don’t want to sing – what’s to sing about? I get tired of talking when I never used to. I drink too much. I rarely feel anything, let alone happy and I’ll suddenly feel the tears coming. The recurring retort is: What’s the point? Hope is a stranger, despair a blanket ready to smother me if I am careless. So don’t look too far ahead, don’t over-exert, practise being present and resting, always falling back into grace. It helps if you believe in grace.

Lately I have stumbled across watercolour painting: the impressionistic use of colour. I love nature and beauty but have never in my life tried any form of art – apart from photography. Now I am using photos as templates for painting – starting off with an attempt at a vase of flowers and ending up with every bright colour in the palette daubed onto the paper: primitive pieces of floral art. It’s art therapy I suppose, like mindfulness – it takes me out of myself. My new hobby is a relief like a breath of fresh air – simple and child-like, it carries no demands and doesn’t call for any judgement. Best of all it actually makes me feel happy!  What a gift…

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And no words are required.


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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.

 

 


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A time for mourning

Wherever there is loss there is grief – and grief is exhausting.  It may be hidden grief – subconscious sadness, buried pain with little outward show – or a more obvious storm of weeping.  Either way the emotional bruising has a huge and probably largely unexpected physical cost. How can I get out of bed and drag myself through another day? There is nothing I want to do, nothing for which I have any energy… I have lost my bearings and purpose and all is grey and pointless. It sounds just like depression – because it is: it is sadness with a reason. In fact in my case there are 3 reasons – a triple whammy.

The first ‘death’ was the ending of a season of work, blogging and ministry – a good ending, a clear finishing point, but still the loss of role and direction. A line was drawn at the end of 2012 and more lines in 2013: looking back now I can see they were times of gradually letting go and stepping back, handing on a baton… This was the beginning of my ‘going upstairs’ and leaving others to take over. By 2014 finding a way to physically move on was clearly the right thing to do –  to forge a future for Martin’s work and more space for our marriage by making a home in Leicester . But still, however good and necessary and right change may be, it is still loss. I had given myself to that series of projects and people and church over 14 years and it defined who I was. Goodbye, Redhead in so many ways – and there is no going back. That is why I have never coloured my hair again since it re-grew.

We started renting the small upstairs flat in Leicester in May 2014 – it’s ages now! – and were living between our 2 homes over the summer, weekdays in the city and enjoying weekends with our cross-generational community in Loughborough. Hmmm – how our choices and decisions lead us on beyond what we ever imagined as those months unfolded. We had very effectively driven ourselves out of our long-standing family home into a new beginning… not knowing what else was just round the corner.

You can see the ‘About’ page for more details, but basically it’s now coming up to a year since our son died. Perhaps it’s the anniversary or just the autumn season reverberating with the sights and sounds of the dying year, but November is proving a difficult month to negotiate: I’m having to take it a day at a time. Anyone would understand this indelible grief, the continual search for the grace to carry the loss of a child, part of my own flesh and blood. Also we’d journeyed with Sam for 5 years as he’d fought for his life and he was so sure he’d won the battle right up to the end, bless him. Perhaps he had… but we are left behind with the legacy of those years and a hole nothing can fill.

Sunset over graves

But that is not all. Now there is the final cut: the sale of our old home. I really thought I had let go – the house is virtually unrecognisable from when we lived there. All the lodgers moved on to their own new places this summer and there is now another young family care-taking for us until it all goes through. We have a buyer who is willing to wait for our mortgage redemption penalties to expire in February – all should be well as long as the structural engineer can help us fix some nasty cracks…  Our 2 year transition should be completed in the New Year.

So why is it this is the hardest loss to bear? Why am I suffering as much as I did with losing Sam? Perhaps because I have to keep returning to continue the giant clear-out of stuff we have collected over the years that there is no longer room for, so I’m continually reminded of what is lost…  Yet it’s really good that I haven’t had to move everything out all at once, with so much less space in Leicester and so little energy for it. I am tackling it gradually and doing lots of tip and charity shop runs.  It’s good – and good to have friends there to look after the place too – but also not good. There are too many ghosts, too many memories :-/ Plus I haven’t yet made our nest in Leicester. We now have the downstairs of the house as well as our erstwhile flat and trying to work out how to make it one home is proving challenging. I am having to work at making a place to rest!

Amidst so much loss it feels as if everything has died. I am left empty and everything is ash. Of course there are shoots coming through, things to be grateful for, signs of hope and I know that one day Spring will come again, but for now – it is a time for mourning.