Gone upstairs

a personal journey through grief and change


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On the ward

It was a gruelling night.  Sam needed nursing care – he was incontinent, unable to get out of bed alone, not fully ‘with us’. At some point he was wheeled off for his scan. At 2am Martin’s brother and father arrived: they had collected Becca at a train station en route She’d been having a ‘2 months together’ celebration with her boyfriend, Tom – which was why she’d wanted to go home. In need of support, she invited him to come along too. Brave man – he’d never met any of us before! But he was willing to come into this traumatic situation to support her, as he continued to do in the following months. We are eternally grateful.

In the early hours of Tuesday 18th November there was a moving family reunion in the dimly-lit corner of the 6-bedded ward as we all tried to keep our voices down around his bed: Sam and his fellow patients were asleep. Martin and I were exhausted and very glad the cavalry had arrived. We were able to take Martin’s dad back to our flat – only 10 minutes walk away – and all go to bed, while Richard, Becca and Tom took over at the bedside…

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Obviously there had also been some medical intervention since Sam’s admission – drugs for pain and sickness and also the first-line treatment for raised intra-cranial pressure, the steroid Dexamethazone. This drug reduces the inflammation and consequently the pressure and its symptoms and it undoubtedly helped cause the improvement that followed. By morning Sam was back to his almost-normal conscious self. We returned to the ward at around 7am and found Tom and Becca sleeping on chairs in the dayroom and sent them to our flat for a proper rest. Richard was by Sam’s bed and soon decided that as the crisis was past he and Dad would drive home. Later on, Becca put Tom on a train back to Brighton… and then there were 3.

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imagine the goose as the consultant – having a good telling off!

During the morning there was a ward round. A young consultant came to talk to Sam about what they had found and what they could offer. Oh boy – that poor doctor, having no knowledge of our son’s history and approach, got the full force of Samuel! “The CT scan shows the tumour has grown and there is mid-line shift (ie it was pushing into the left side of his brain). We could get an MRI with more detail and send you to the surgeons in Nottingham to see if they can do anything. We could give you some chemotherapy…?” “I have dealt with this in my own way up until now and nothing has changed. I don’t want you to do anything, I want to go home and continue to do it my way!”  With words to that effect Sam effectively dismissed the medics and took back control of what was happening to him – at least as much as he physically could.

The previous evening we had texted a number of our friends and Sam’s friends to let them know about him, so soon after that Dean, Sam’s energy-healer friend, came to visit. I’m sure this meant a lot to Sam – he was very reliant on Dean’s advice. We were also delighted when his old school-friend James came in. It was in fact the beginning of a number of reconnections with people who’d known him in recent years which was so important and helpful over the coming days. And of course his img_2783sister had long hoped for this opportunity to support her brother when he needed it…

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The day now stretched ahead and there was a lot to organise. Martin took over, making contact with the acute oncology team who could make the arrangements for Sam to be cared for at home – including night nurses, a hospital bed and other nursing care in due course. I drove back to Loughborough to get his house ready…
img_1203I worked hard cleaning and moving furniture around, putting the sofa in the kitchen so that there would be room for the hospital bed when it was delivered. I tried to position his personal things where he could get at them – music and a bedside table, chairs for visitors. I tried not to think that I was preparing a place for him to die in peace: we had no idea what that would entail or how long it would take…  But this is the status I posted at the end of the day – facebook found it for me this morning, 2 years on. Look at that, 140 comments… so much support from dear friends and barely known acquaintances. It meant so much. We knew we were surrounded by many prayers and felt the grace carrying us. Later on it was astonishing to be thanked for allowing others to walk the journey with us by being so open and sharing it as it unfolded. It continues to be a privilege and even helps to somehow give it all meaning. Thank you for reading now…

Meanwhile Martin sat with Sam. Martin still remembers with immense gratitude one of his consultant colleagues coming onto the ward to bring him coffee, mints and encouragement. He witnessed Sam try to walk to the toilet and fall. The hardest thing for him as a doctor was being unable to do anything to help, to make him better – because no-one could do anything. He recalls lying on the bed with him, crying over our son, his tears falling on Sam’s face – and Sam looking at him and saying, “Why are you crying Dad? You haven’t seen what I’ve seen…” We don’t really know what he meant or what he thought was going to happen: he continued to insist the tumour was irrelevant, but it seemed that at the same time he knew he was dying and was completely unafraid.

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He was moved into a side-room for his second night in hospital, which gave a bit more space and privacy. It also declared that he was no longer an emergency to be watched over – clearly the steroids and other drugs were having an effect. Becca took over the nightshift and laid out her own bed on the floor next to him and we returned to our nearby flat – so grateful for our Leicester home ‘for such a time as this’! – to rest and wait for what tomorrow would bring…


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Emergency brain scan, please

Monday morning 17th November 2014. Believe it or not I was still hoping I would be able to get away to the 3 day retreat I’d booked at Launde Abbey… that’s how convinced we were that Sam had stabilised. Martin had already gone to work and Becca was getting ready to return to Brighton as planned.

It seems crazy with hindsight, but perhaps because we had lived with this situation for so long and certainly because Sam was so sure he was well and could manage we had developed the habit of preserving normality, conserving emotional energy and giving ourselves the space we needed. So there I was, back in Burton St – a mere 100 yards from Sam’s house – refusing to worry, relaxing and playing with our lodgers’ delightful  baby girl 🙂 What a gift she was during that stressful season! I could switch off and pretend to be a granny – perhaps a reminder of simpler days. Sam would ring if he needed anything – he always did.

On the way to the station Becca and I popped in so she could say goodbye to her brother. He seemed alright, but didn’t want any breakfast – feeling a bit sick. Thinking about it now I have no idea whether he’d been upstairs to bed or just stayed on the sofa all night… I wasn’t allowed to interfere with his lifestyle and it was so painful to be rebuked I had learned to bite my tongue. Anyway, I had to get Becca to her train so I promised to return as soon as possible to check on him.

We fitted in a quick visit to the flat/house in Leicester she had come north to see and I put her on the train there. On my way back to Loughborough I had a call from Sam: he’d been sick.

I trained and worked as a nurse when I left school – I’d even run a ward with neurology patients for a few months: I knew the symptoms of raised intra-cranial pressure. Sam hadn’t suffered with it in the way most brain tumour patients do, because he had had a drainage shunt inserted back in 2010 when his biopsy was done. It’s what they use for children with hydrocephalus – ‘water on the brain.’ This had undoubtedly helped to keep him relatively symptom-free. But now, as the tumour seemed to have grown or bled, the space inside his head was getting smaller. Raised pressure classically causes headaches and sickness. He wasn’t admitting it to us, but we found out later from one of his internet friends that he’d had headaches most days for some time. That was why he was spending so much time quietly meditating and smoking cannabis as medication, to reduce the pain.

It was at this point I knew normal life was over and rang to cancel my retreat. And I knew I’d have to call the GP to get medical help and drugs for the pain and sickness. Nurse photoWoodward swung into action…

I see myself entering his little house with my key. My son is pale and screwing up his eyes because of the headache. I manage to get 2 paracetamol down him with a little water and wipe up the clear vomit from the parquet floor next to his chair. He’s in the dressing gown he always wears, covered in a blanket, doing nothing. There is probably a cat present somewhere in the room or on the stairs: they are his cuddly companions, making living alone in that little house bearable. Even if he hasn’t fed himself he will have fed them… “Sam I’m going to ring the doctor”.  “Grunt”.

I have this auto-pilot thing where I just switch off emotions and do what needs doing. This must be how I coped, by not thinking, by ringing the surgery and asking for an urgent call-back, by automatically cleaning the kitchen and tidying the cushions. I don’t remember what I did for those hours of waiting or how I got through them. I do remember the locum on the phone surprising me by not coming out but saying he would arrange an urgent scan – also saying there were no notes from the home visit I’d arranged the previous week (grrrr). I must have told him we wanted to go to Leicester rather than Nottingham where Sam had had his radiotherapy because we’d decided over the weekend it would be better to be where Martin works and we feel more at home instead of trying to avoid uncomfortable clashes with colleagues as we did in 2010. Nottingham just felt all wrong this time: we had too many horrible memories from past experiences there: Leicester turned out to be perfect.

Meanwhile, Sam on the sofa, letting me take over.  Undoubtedly feeling awful… At some point I said he must get dressed as I was going to drive him to hospital for a scan. I can’t remember how he reacted except that he said he wasn’t going anywhere without some ‘medicine’.  He had to phone Ash and get him to bring some weed over to the house. I updated Martin, who was ready to meet us when we arrived at the LRI…

It is horrible to be caught between worlds. This had been our experience since the end of 2010imgp2713 when, having finished radiotherapy, Sam started seeking out every alternative means of physical and spiritual ‘treatment’ he could get his hands on. We’d had no choice by to let him do so: he was a adult and there was no other conventional treatment available. Many old blog posts detail the tearing and letting go we had to go through time after time as he made choices we could not agree with. The difference of approach was the subject the Mail and One Show were most interested in. By now the use of heavy duty cannabis resin to supposedly kill cancer cells had stopped but he’d got into the habit of smoking instead: for analgesic rather than recreational reasons perhaps, though one of his favourite sayings, now on the plaque on his grave, was “So high right now!”

I must have gone home and come back, at some point got the car ready. It was dark by the time Ash came and I was longing to get Sam moved. As it was we got stuck in the traffic on the Leicester inner ring-road. Sam lay down on the back seat all the way. To encourage and comfort him as we waited at lights, I turned round and said how proud I was of him, he’d done really well and overcome so many personal issues – forgiven people and dealt with his ‘stuff’. I meant it too: not many 27 year olds are forced to do inner work, but Sam believed his negative emotions had contributed to his illness and he was definitely on a spiritual quest… So I said “you are really whole on the inside now, son. The only thing you still have to learn is surrender!” He replied that his friend Nic in Louisiana had said the same thing – and that I had been his first and best spiritual guide.

What a sweet conversation at such a moment. I am back in that car now, close to my wonderful son… It was right about this time (5.30pm) 2 years ago today. And an old version of The Lord is my Shepherd came into my head and (somehow) I sang it.

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The Lord is my Shepherd I shall not want, He makes me lie down in green pastures, He leads me beside the still waters – He restoreth my soul and guides my path in righteousness for His Name’s sake.

Though I walk through the valley of the shadow of death, I will not fear Thou art with me. Thy rod and thy staff they comfort me – Thou preparest a table before me in the presence of my enemies

Surely goodness and lovingkindness shall follow me all the days of my life. And I will dwell in the house of the Lord – forever and ever and ever.  The Lord is my Shepherd I shall not want.

Psalm 23 (King James version) by Keith Green.

“Mum, that was beautiful” Some of the best words I have ever heard.

Soon after and with great difficulty I found a place in the hospital car-park and Martin met us with a wheelchair that he’d miraculously found by the main door. Together we pushed Sam and carried his things up to Ward 16, medical emergency admissions, and got him into bed. Martin had already been talking to the doctors and chasing up the scan, which would be done “soon”. Almost immediately he wasn’t at all well – started to have small fits and go unconscious. We thought he might actually die that night and Martin phoned his family to come up from Sussex.  Rebecca had only been home for 4 hours.


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Catching our breath

This process is challenging. Writing every day is immersive – I do feel as if I am back there 2 years ago, or at least watching developments from the corner of the room… It’s Sunday morning now, 16th November. I can’t remember but I am guessing Becca spent the night at Sam’s house. It’s time for me to make bacon butties and work out where we got to with LOTR…

Tolkien’s tale of middle earth was embedded in our children at an early age. Theseimage-1 photographs were taken in Chicago in 1995 when Sam was 8 and Martin had almost reached the end of the third book. They were keen to have the next instalment at every meal to find out what happens at the end. Martin did a sterling job, putting on voices for all the characters. He had a particularly ridiculous camp one for Gandalf which made them both giggle (“Do Gandalf, Daddy!” “Oooh hello! I’m Gannnndalf”) You can see Sam is nearly asleep over his Chicago pizza but the book is ready on the breakfast table the next morning…! We finished it one sunny morning drinking coffee on a restaurant pavement in the shadow of the John Hancock building 🙂

These are the things that make memories. Hunting for these half-remembered photographs brought back many more. There is comfort in it – reminders of happy times, reminders of Sam and our family life back then. Nothing can take these things away – they are our treasures. I am glad I took so many photographs! I said before, these years would have been swallowed up by time whatever happened later on: we have already had to learn to die to the past in order to move forward and grow.

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Sam in around 2006

So – we are all Lord of the Rings fans. We eagerly awaited Peter Jackson’s films and each year made a family visit to see them as soon as they were released. They were not quite true to the book, but close enough for us – we loved them. We bought the extended DVD’s and Sam frequently watched them again. Later on he even travelled down to Brighton to visit Becca so they could go to an all night screening of all 3 films! She fell asleep I believe… It was the obvious thing to do together – watch the trilogy for what turned out to be Sam’s last time. “There’s some good in the world, master Frodo, and it’s worth fighting for” “One thing’s for sure Frodo couldn’t do it without his Sam” “We can only do our best with the time that’s left to us” “the smallest person can make a difference” “We may not defeat them, but we will meet them in battle nonetheless!” “No man should have to see his son die” “How do you pick up the threads of an old life?” Deep echoes of truth that help us all on life’s journey.

Our Sam – he was Samuel, but I wish I’d had the courage to name him Samwise! – loved these ideas and had plenty of others of his own. He was a thinker, an amateur philosopher. He knew himself well by this stage, had talked through his childhood issues with me, addressed poisonous relationships from his student days, knew his strengths and weaknesses.

He was also a wizard with words: we always tried to get him to write and when he did it was stunning. He could argue the hind-legs off a donkey; he could turn something round and send it straight back at you. He posted crazy videos of his opinions and thoughts on You Tube, most of which we find embarrassing, but apparently he had a following. (If you are inclined you can look up Scratch 47) He had his own spiritual approach to life. He felt entirely misunderstood by everyone else and regularly ranted about it to his facebook friends!

Here is a sample of Sam, culled from his page by his fb friend Duggy Dyer.(Being so clever you’d think he knew Duggy was really me, but he chose to ignore that… “Duggy please tell Mum” “Mum says…”) Anyone who was fb friends with Sam in 2012 will recognise it…

“I’m a 25 year old hermit introvert with an 155 IQ who is surviving terminal brain cancer 3 years going now with doses of hands on spiritual healing and massive doses of illegal cannabis resin, who went on national TV twice to out himself to help other people despite being sick of society, and by the way despite being functionally atheist I was touched by an inexplicable healing heat (yes, you can say it, God) during a Christian evangelist meeting and am wrestling with my purpose/goals/health/social life/finances, so please don’t think I’m an egomaniac, know-it-all, depressive, or angry misanthrope, because I really like individuals and even despite all of that don’t want to make you awkward because the only way out of all of this is the communication, warmth, and understanding that I will never ever admit I secretly crave…

 “…my mind and freedom to choose is the only thing I have left and I’ll never surrender that no matter who decides to be condescending or mouthy, because if I do, I am the victim they say I am. So you’re stuck with me, my scatterbrain, my motormouth, my broken heart, my social anxiety, my death sentence”

 

This extraordinary and clever young man (155 IQ) was our son. We were the ones stuck with his ‘scatterbrain, motormouth, broken heart, social anxiety and death sentence’ – though he never burdened us with them… apart from maybe the motormouth! It’s good to remember him and to recognise what he was up against, day after day, inside that head of his.

During that precious weekend, if there had been any doubt in our minds, it became obvious how badly things were deteriorating in his incredible and flawed brain. The boy who had memorised all 176 episodes of Star Trek TNG and their directors when he was 10 or 11 couldn’t remember his computer password. He couldn’t get on-line… This really was a major blow, but he was so happy to have us around he didn’t make a deal of it. I wonder what he thought was happening…

That evening he thanked us. He said how much he’d enjoyed hanging out with us all, how much he appreciated it. It’s true, it wasn’t a common occurrence. Becca lives in Brighton, Sam himself usually didn’t want it. The 4 of us struggled to find something in common once the Lord of the Rings years finished. Christmas Day was our family highpoint, sometimes birthdays and less often a film we all went to see – when Sam had usually already seen it illegally pre-release on-line!

Our time together had been so restorative that at the end of Sunday 16th I posted this on facebook. “Sam was really unwell yesterday and we were preparing for the worst, but he’s made an amazing recovery and seems almost back to normal this evening… Lots of good family time was had by all and though the rest of us are pretty tired going into the week, all is well…”

For now.


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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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Advance warning

2 years ago tonight I was staying with my father and step-mother in Totnes, whiling away a dark Friday evening, watching TV or reading, with no idea at all of the life-changing events about to unfold. It had been my Dad’s 86th birthday the day before – I’d gone down to see him for the occasion. Now I was looking forward to getting home because Becca was coming up from Brighton for the weekend to see the flat we’d been renting in Leicester – particularly so that she could understand why we had decided to buy the house from our landlady!  It was a rather crazy decision as it would be our 4th property…  But we knew it was too good an opportunity to miss.  It was only later on we discovered quite how good.

I also needed to get back to check on Sam, who had been a bit off-colour for a while with what he described as a ‘bug’. I’d called the doctor in to see him while I was away, but apparently she had said to rest – and think about getting another brain scan. He hadn’t had one for about 3 years: he didn’t want one. As far as he was concerned the tumour was old news, dealt with, history. No this was just ‘a bug’ – maybe somethng wrong with his drainage shunt which relieved the pressure of fluid in his head – and he was waiting to get better. Meanwhile I knew he wasn’t eating much – a great bone of contention between us! – and was most probably lying around on the sofa in his dressing gown, maybe on-line,watching films or playing games. His friends would visit bringing weed for them to smoke as well.

There was not much I could do about any of this as we had installed him in his own house and couldn’t often get past the threshold! He’d been given a terminal diagnosis nearly 5 years before and was convinced he had beaten all the odds: he had a will of steel and was utterly determined to shape his own destiny. So… parents are fairly redundant in most 27 year old young men’s lives! I had gone to Devon and Martin had also gone away – to Nice for a work meeting. We had been getting on with our lives as much as possible and we assumed our son was OK because that’s what he wanted us to think. He was in charge. If he needed anything he could ring or call in the lodgers from our house round the corner.

image-1I had however, bought him a large fluffy toucan puppet from Totnes market to wear on his arm! He may have been 27 but he’d had a love affair with squeaky glove puppets since he was very little…This one made an appropriate rude noise when you pressed it and Iimg_2794 couldn’t resist buying it for the lad – both for old times sake and also because his father has a tattoo of a toucan on his derriere 😉 Little did I know that it would accompany Sam into and out of hospital and be on his bed at home when he died less than 2 weeks later.

So – no advance warning then, as I sat cocooned in the cosy lounge in Devon. Or maybe we’d already had the warning years before but it’s siren had dulled with time and all the camouflaging techniques Sam employed. The truth was we’d lived with anxiety for so long we were like elastic that has lost it’s stretch, so we coped the best we could and dulled it as necessary. Even his little ‘illness’ hadn’t really rung any alarm bells… he’d had episodes like this before. So no, there was no advance warning of what was about to start in 12 hours time.

Now I am giving you advance warning. 2 years on I am going to revisit those 10-11 days and write about what happened. I have told much of Sam’s story over the years, but even in the post I wrote about his death and burial one month later I didn’t go into detail in the way I intend to now.

Why? Why now? Well – I think I need to… I think it will help me go deeper in my grieving than I have been able to go this far. Painful it may be, but I must make room for the buried pain to come out if my heart is ever to be healed. Perhaps this therapy can help me and even some others.

Also as a tribute to Sam. We have never been able to face putting together a celebration of his life – not yet anyway. We had a small informal gathering for some friends and family when he was buried and promised more later – but it has not happened: I can’t face it. Perhaps I can use this time, now the initial 2 year phase of acute grief has been experienced, to pay my respects to a brave man, to remember his humour, his strength and the loving things he said in his last days.

Anyway, that’s the plan – a post every day remembering our roller-coaster journey of 2 years ago. Buckle up!


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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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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.

Snoopy