Gone upstairs

a personal journey through grief and change


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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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The turning of the year

Yesterday I was full of words but there was no opportunity to express them. Today I am making time, but it is possible they will not come out from hiding. It is painful to live on the cusp of ‘almost but not quite’. There is always risk in artistic expression. When I tried my hand at watercolour painting this summer beginner’s luck gave me a great start (see previous post!) but I soon found my efforts did not really produce anything to write home about – as it were. I became disappointed and stopped wanting to paint.

When will I make the time to try again? There is so much to overcome when we attempt to express something that is hidden inside us… lethargy, fear, distractions. However, on the plus side, my dabble in visual art has re-ignited my first love of photography – I suppose because with photos you only have to capture a picture not create it! My camera has been well-used again this summer and the photo-blog is back on course. There is a lot of enjoyment and creative satisfaction in that – as well as a healthy focus on beauty and light 🙂

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Yes, it’s been a beautiful summer, extending right into mid-September. Yesterday – the Ides, the midpoint – was our first full day back to reality in the city that is nearer to Space than the sea. It was a culture shock to return from Finisterre (literally the ends of the earth) and is taking time to adjust. My headful of buzzing thoughts spanned memories of holiday heat and awareness of a new chill in the morning air. In the midst of the necessities of laundry and housework – get a haircut, cut the grass – a resistance to just returning to business as usual. Decisions to be made for the new season – French classes and various family plans -I even booked our Christmas hotel! How will the next few months look? How far have I come? A doctor’s appointment to review the same things – a healthy way forward. In all the shops the ‘Back to School’ displays provoke sadness at all that has passed and a loneliness at the fresh wave of young people forging forward while we grow older. The 2nd anniversary of Sam’s death approaches, the short, dark days, another marker in our journey.

And yet… I do feel hopeful. September has this effect. It’s the start of a new year, new opportunities – renewed energy after the lazy days. This morning we even welcomed the refreshing rain and last night the strangeness of putting lights on against the early gloom – the cosiness of home. The equinox will soon be here and then October – yet they are welcome because we are sated with summer. There will be time to look back at all those photos and enjoy it all again, but a new wardrobe to wear.

The last 6 months has been very hard for me: I have been so low. But the drugs are working well now, keeping me on an even keel. I am learning to be kind to myself and set good boundaries. If you put one foot in front of the other eventually you get somewhere new. On Monday I will meet my new counsellor and try out a new choir. I might pick up a paintbrush again. I will have lunch with my friend. And of course there’s the ironing… and planting bulbs for the Spring.  It’s always good to welcome the dawn, even when the clouds hide the sun.

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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.