Gone upstairs

a personal journey through grief and change


A thief in the night

“But understand this: If the owner of the house had known at what time of night the thief was coming, he would have kept watch and would not have let his house be broken into” Jesus in Matthew 24:43

There are a lot of things in life we don’t expect, don’t even think about.  Surprises can be delightful of course, but I mean bad things happening, suddenly, out of the blue. In the past month we’ve had 2 terrorist attacks and a terrible fatal fire in the news in the UK: the country seems to go into corporate shock.  Then the questions, insatiable desire for information: how could this happen? what exactly happened? who is responsible…?  The process of grief begins to work through, denial, bargaining, anger… People want to pay their respects, support the bereaved, react, respond, see justice done. We all want to fix things.

But some things cannot be fixed. The end stages of grief are depression – the realisation that the sadness of loss is something that has to be lived with – and finally, eventually, hopefully, some sort of acceptance. The closer one is to the event, the more emotionally involved, the deeper the process and the longer it takes to ‘recover’. By now many British people will have forgotten the Manchester bombing, moving on to the next thing, just as the newspapers do. The people of Manchester will not have forgotten, but having done all they could – and the response was incredible – they will have gone back to normal life, Undoubtedly there’s a heightened awareness of the possibility of unthinkable things happening, people will be more nervous, more alert – but you know, life has to go on, of course it does. But the families of the dead, the injured and crippled will never recover.

All this is obvious – we all know it. Why am I writing it? Perhaps because it is easier to try to forget about things that make us sad and upset, much more comfortable to sweep all those emotions under the carpet. What a desperate suffering world we live in! Refugees, war, famine, cancer sufferers, injustice, corruption… how can any of us cope with all that? I am not the only one who is avoiding the news these days.

But I’m also writing again because we have been coping with our own personal ‘thief in the night’ disaster and all the emotions that has thrown up and I need to process it somehow. Sam’s illness and death was a long time coming – the man in black on the horizon of our lives and moving towards us for years. Yesterday was 9 years since he dropped out of university after one year, the beginning of realising there was something very wrong with our son… We lived with the uncertainty of what would happen, of course, but the grieving really started back then when the incremental losses started. Sudden death is another beast altogether… Sudden loss of any kind is more acute, like a sharp cut rather than a gradual sawing of the knife. Bewilderment is added to the mix, “We didn’t see that coming!” Guilt and recrimination, “If only I’d… ” The sudden gaping hole.

So, our thief in the night was literal. We had a burglary when we were away on holiday – no-one in the house to keep watch and they took advantage of that. No-one died. In fact it is so unimportant when compared to the recent nationwide events and their trail of death and destruction it is quite embarrassing. Yet my level of emotional investment in my own life compared to the fate of strangers has made it far more painful for me. I think that is the same for everyone: what you care about can make you happy or sad, however trivial it may seem to others looking on. In fact we have had a lot of sympathy, concern and anger from friends and strangers alike. Mainly because I was so mad I wrote to the local paper! It didn’t really help, but it was certainly part of the process.

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Yep, that’s what happened. Along with the obvious enormous computer, which will be of little use unless they have a super-whizz Mac person as Martin securely locked everyone out of it, they took my old MacBook with photos from 2010 to early 2015 AND THE BACK-UP DRIVES. Don’t we all leave our back-ups with the machine? Not imagining the existence of heartless, low-life thieves looking to make a few quid with anything tech they can find…

So – all those years of photographic memories, erased. Literally thousands, not just of Sam, but of all the things we did and places we visited from when I stopped printing in 2008 until I got my new Mac in 2015 because iPhoto was full! Come to think of it, the very last prints I have are from the day I brought Sam home on 16th June 2008! And all for nothing: a 2009 Mac with the bottom peeling off is not going to be very sellable.

And then there’s my guilt at not taking more care over backing up, simply because we were too complacent. And the anger at cleaning up some man’s footprints and finding broken glass on the far side of the bathroom. And the hopeless lack of response from the local police, even when the Big Mac gave a location when it was switched on – twice! Mine was too old to do that, not compatible with the Cloud… Should have done something… but you just don’t think it will happen, that there are people out there who will break and enter and take your stuff. And some other stuff too, my mum’s silver bracelet that I wore once a year, gifts of jewellery that are irreplaceable, sentimental value as they say.

My sentiments have been badly bruised I can tell you. Just when I was thinking the past was behind us, I have been dropped right back into the grief process for Sam – the exhaustion, tears, depression, anger and the rest. We were robbed of the end of our holiday and all the good it had done us. I keep noticing other things that are missing – this morning a chenille throw I liked, obviously used to cover up the Mac as they moved it. A week ago – my favourite coat: ditto.

A dispassionate eye has pointed out all our weaknesses in security and we’re now fortifying the bl**dy house for when we go away next.  The hardest part is feeling a kind of discomfort in my own home, just when it was really starting to make me happy. Don’t like the city anymore either and don’t want to talk to anyone, so there. Insurance agents are horrible, of course – though she couldn’t help that going through it all again made it feel worse again and was only doing her job checking what we’d reported was true… grrr: my precious possessions reduced to the bottom line. You can’t replace what I have lost!

So I have to get used to it – ‘suck it up, princess.’ To quote Jesus again, “do not store up treasure on earth where thieves break in and steal” Durr. Yes, the documentation of my life was too important to me: they were only photographs, not the actual events: I do still have some in various other places – blogs, facebook, prints – and I have a lot of them in my head. We were very fortunate our decorator discovered it to forewarn us before we arrived in the middle of the night: he fielded police and secured the windows. They didn’t find this current computer or Martin’s back-up drive. They missed cash, cards and security details. They didn’t ransack the place. I am grateful for small mercies…

Bear with me. It’s a process…


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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.


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”