Gone upstairs

a personal journey through grief and change


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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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Seven year itch

It was seven years ago today, 1st April 2009, that my 22 year-old son called to me down the stairs, “Mum, I can’t see” and a little voice in my head said oh so clearly, “From today your life is going to change”.

Never a truer word, as they say. First the GP surgery, then the Eye Emergency Dept. Right now as I write I can go back in my mind to where 7 years ago we were waiting in a row on the uncomfortable seats in the MRI unit, Sam’s head in his hands, trepidation in our hearts, knowing with all our medical education that raised intra-cranial pressure could only mean a space-occupying lesion in the brain… yet hanging on to hope against hope all the same. Waiting. Holding ourselves together and waiting for time to pass and things to be done and people to say things to us.

The scan showed large lesions – white patches in his right brain. He had no symptoms apart from the headache and double vision: absolutely everyone said “this cannot be a brain tumour!” It was unmissable, yet atypical… The ophthalmology consultant called the neurologist, they agreed that perhaps it was ADEM – a curable inflammatory condition similar in behaviour to Multiple Sclerosis. That was the ?diagnosis.

Sam was admitted to the emergency ward, given a lumbar puncture to measure and relieve the pressure, and steroids. I can still see him sitting on the bed beforehand trying to absorb the news – pale-faced, unbelieving, as we all were. It is not what 22 year old young men expect to happen to them. It was hell for his father – especially after he looked at the scan. I suppose I went numb – I always do.

So yeah – that was the start of a whole new life. Not all at once… he was treated, sent home, given regular appointments to have his visual fields checked. The high pressure in his head from the extra mass was the problem, damaging the optic nerves – especially on the right side. The lumbar puncture released that pressure for a while – until it built up again. He got into the habit, when the headaches got too bad, of asking for another needle to be inserted in his spine – he had about 3 during that year, I think – but that couldn’t go on: it was too dangerous. Sudden release of pressure from a swelled brain can pull it down sharply into the upper spine and cause death by ‘coning’. There came a time when it was no – “we have to investigate further, we have to do a biopsy”.

But we had 10 months thinking this was curable. A second opinion at Queen’s Square even backed up the ADEM theory! So we kept on living, going away on holidays – 2009 was a great year for holidays that we would never have taken if we’d known what was really going on… Funny how it all works out and how looking back you can trace a journey you never ever imagined was possible to walk. There was grace. Every day.

It’s a long story – perhaps the defining story of our lives. At this point I am considering making it into a book. That is my nod to the 7 years and this post may end up being the introduction to an anthology of blog posts, poems, reflections and photographs such a volume would contain. Sam deserves it and it may help me grieve. I am in the process of deciding whether now is the time to commit to that…

When a journey is shared it gives it meaning – and we all need a narrative to live by. I would like to think the lessons we learned can be given to others who, I hope, will never have to go through such times – and perhaps be an encouragement to those who are walking a similar path to our (so far) 7 year one.

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We all need to learn how to both accept our mortality and stare down death.  We all need to live one precious day at a time, fully aware of the gift of just being alive: I like to believe we have embraced that call, but the truth is I still need reminding. Sam’s story can teach us all how to be fully human – loved and at peace despite suffering and loss.

 


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Anatomy of a blog post

I wasn’t very happy after that Back to the Future post. First public outing for a long time – bit of an experiment, bit of a risk.  Although it was fun to join in with all those on social media who were marking the day, I actually felt a bit embarrassed referring to all that numerology stuff again. ‘Look I’m a closet weirdo being superstitious about the date! I have a magic no. 21 here urging me to post!’

Well, I’m not about to renounce my old prophetic language and all that went with it – it was a building block of a past season. However, for me that season has totally changed and I really don’t want to simply take up where I left off.  Yes, I said that… but I still couldn’t resist trying to relate the new to the old, looking for meaning in the way I always have done by drawing the past into the future.

But there has been a schism, a chasm, a void that’s opened up, a discontinuity, a death: the bridge is down and looking back across the ravine is not the way forward! 

Maybe I forced it too soon… of necessity employing old language to describe something that’s still being born. The problem with the future is that it is unknown, unseen. Any attempt to describe it is going to be difficult if not futile because we are always stuck in the old paradigm… until the new simply arrives and we look around and discover it is here!  The visionaries and prophets may see it ahead of time – though the film-makers got quite a lot wrong about 2015! – but all us ordinary mortals can do is describe where we are now and analyse how we got here.  And how am I going to do that if I don’t write?

You’ve got me there! But in fact the crux of the matter is, forget all that auspicious day, carpe diem stuff… and the “really ought to get on with it cos time’s passing and you know it’s a good idea” blahWhen it comes to spilling your guts online the real issue is the emotional cost. Here are my beliefs, observations, opinions – here is my heart.

Putting it ‘out there’ – sharing a personal story – seems to have become a post-modern trend since I first found myself blogging about our journey with Sam. I don’t remember  there being a section for True Life Stories in WHSmith or a ‘personal essay’ tag on WordPress 5 years ago… But now, along with reality TV, it is one of the signs of our times – undoubtedly aided by facebook et al and the ‘sharing’ phenomenon.  So do I really want to be part of that?

THAT is the question! And if so, whether now is the right time to be breaking the silence and making myself vulnerable again… Will there ever be a good time? (Perhaps when the date is 21st?! 😉  I must ask myself, what is the purpose of it? Although it’s nice when a friend is encouraged by something I say – as Diane was last time – and people want to ‘like’ it or ‘follow’ me, I can’t be doing it for that reason… I’ve been through all the ‘how many people read this post’ scenario years ago and it’s pointless: one is actually enough! My writing has got to be primarily for myself, because I want to do it and it does me good.

So then if it doesn’t make me feel good…? What then?! I’ve experienced this doubt so many times before – times when a post turned to ash in my mouth, when I dismantled and picked holes in it far too late, when I felt foolish beyond belief.  Maybe I can turn a clever phrase and quote Henri Nouwen’s and Doc Brown’s wisdom, even recall that old and (to me) tired language of numerology, weave it all together in a satisfactory way – but does any of it help me? Maybe I should be asking, how do I find a way to write that will help?

What did the man say? “One of the most satisfying aspects of writing is that it can open in us deep wells of hidden treasures that are beautiful for us as well as others to see…”

How to get to those beautiful treasures and find that sense of satisfaction? I guess only by actually writing!

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Writing can be a creative and invigorating way to make our lives available to ourselves and othersYes – I do know this from before – it does makes life available… I just have to look back at the documentation contained in that original blog and the ones that followed – eg Headshave for Haiti and Longing to Escape – to see the story of my life so far. For some reason I don’t really understand I don’t have a problem with other people seeing it as well… I am kind of proud of it! And so I should be…

So – conclusion time! Not only is this post too l-o-n-g, it’s not even about what I set out to write about!

Sometimes I’m going to feel stoopid but that doesn’t mean anything.

I am writing because I want to understand the journey not because I do understand it.

I am on a new journey now and so even more reason to document, share and analyse… maybe there are others out there who can identify with my going upstairs time of life, maybe we can help each other?

I’ve got this far by writing and I don’t want to lose a precious gift.

The writing itself will help me find the way…

As Henri says, “We have to trust that our stories deserve to be told – and that the better we tell them, the better we will want to live them.”

Got it.

 


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Back to the Future

If I am ever going to start writing again it has to be TODAY: October 21st 2015 has just enough ingredients to make it an auspicious day!

I am not a Buddhist – though I definitely have a great deal to learn about the practise of mindfulness – but I do admit I have spent a number of years searching for patterns and signs in dates and numbers, as anyone who flirted with my original blog will know.  To quote from one post from 5 years ago: “Numbers are part of the language of God.  Mathematics underpins creation: it is “the handwriting on the human consciousness of the very Spirit of Life itself” (Claude Bragdon) and the basis of science.  Generations have found numerology intriguing and there are many examples in Scripture of the prophetic mystery of numbers…” I don’t want to go back over all that ground: the blog is still there containing my many personal posts measuring out an impossible journey in the only way I knew how. The grace of God carried us through in strange and unusual ways. Surely finding meaning and purpose in our lives are what keep us all going?

So  – not a Buddhist then, but certainly a Christian. I don’t really like to use that description these days as there are some people around calling themselves Christians that I am not really sure Christ would recognise. I do not want to be identified as a right-wing fundamentalist and judgmental hypocrite… Just call me a Jesus-follower wondering what a ‘little Christ’ looks like in 21st century Britain.

This re-examining-of-everything-I-believe-in-order-to-find-out-what-I am-living-for-now is what this blog is about, I guess. My old life has died – true story: hang around and I’ll explain…  I really am trying to shake off the old ways of seeing because I know I am being called to live one day at a time without needing to be involved in some big picture/wider context that gives forward direction and helps me feel in control. It is about mindfulness and living life to the full in the NOW moment – about leaning back into Mystery and trusting there is a purpose I cannot yet see. But hey, I’ve got to start somewhere, so I start where I am – as so often in the past, provoked to write by the date! 21

To me 21 denotes a breakthrough and the number of maturity when young people historically got ‘the key of the door’… Daniel in the Old Testament fasted for 3 weeks – 3×7=21 – and an angel appeared to him at the end of that time: now that’s what I call a breakthrough!  A spiritual vision would be nice, maybe, but to have a good day with no backache, no pressures, free time, feeling happy, housework done and actually feeling like blogging will do me for a breakthrough!

AND if that wasn’t enough it is also BACK TO THE FUTURE DAY! 😉 This is the actual date Doc Brown took Marty McFly forward in time to from 1985 in that great 2nd film of the trilogy… but without the flying cars and hover-boards…  So as it says in this picture:

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Yes, Marty, that’s HEAVY! Ha ha – but it does make you realise time is actually passing and 30 years have been and gone. Not even a make-believe time machine can change anything that’s past – but we can all make the most of the future because ‘it hasn’t been written yet”. Again I find myself quoting the iconic film without realising it!

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Writing the future? On that subject, here’s another long-loved quote I found while looking through those old posts on my first blog – a timely injunction to make the most of the time and gifts I have been given for the good of myself and others:

“One of the most satisfying aspects of writing is that it can open in us deep wells of hidden treasures that are beautiful for us as well as others to see.  Each human being is unique and original and nobody has lived what we have lived. Furthermore, what we have lived is not just for ourselves… Writing can be a creative and invigorating way to make our lives available to ourselves and others. We have to trust that our stories deserve to be told – and that the better we tell them, the better we will want to live them.”           

Beautifully put by Henri Nouwen from his compilation Bread for the Journey.  Don’t know about you, but I’m going to need some bread for my continuing journey and maybe there is some soul-food hidden in the continuing story and the telling of it. As our son Sam used to say, “Get busy living or get busy dying…”

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So thanks for the breakthrough, 21. Let’s get on with it!