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 The blog remains as an historical document of life with our unique son and his brain tumour.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…
And no words are required.