Sudden death

Two weeks ago the Daily Mail published our family’s story for the second time, as part of the media response to the legal battle between the parents of Neon Roberts over their son’s treatment. We’d waited a week since this was first suggested, riding the adrenaline rush of getting everything updated for the next day’s paper – which at least one friend went out and bought in a gracious gesture of support, before discovering we’d been left out of that edition – followed by another 6 days of not knowing if or even when it would actually happen. There was plenty of time for us to reconsider, waver and become anxious and plenty of opportunity to feel like victims of the tabloid media – yet knowing we could only blame ourselves for agreeing to it. The reporter would phone to apologise again and I would again be understanding… of course newspapers have their own ways of working and once the story was submitted neither of us were in control.  When it did actually happen it seemed quite unreal, taking me back in time to the forgotten days of struggle and anguish, to a time we currently have no grace and strength for… painful and raw.

Daily Mail

Why oh why had we done this again? Well, mainly because they had promised some much-needed dosh in return – a great incentive indeed, just before Christmas! – and also because Sam was all for it, very happy to be considered an expert in the field of brain tumours, feeling he has something worthwhile to say in the debate raging around the little boy’s treatment: anyway, who isn’t pleased to be famous for another 15 minutes?

As it turns out – me! The story was, as before, focussed around the difference of approach between father and son, but thanks to more room made for photographs this time – particularly in the on-line version -Sam’s mother featured a lot more. I now took my place in the story, the third member of the so-called ‘parents v. son’ trinity – while Becca, who is wiser than I, was deliberately side-lined at her request… apart from being mentioned in passing and pictured as the little sister so that Sam doesn’t seem to be an only child on top of everything else!  The newspaper feature only had one moving picture of mother and son (above), but the on-line version had very many of my old family photos, illustrations from my blog that I’d gladly shared with the friendly reporter 20 months ago, but which were now being broadcast far more widely – and with someone else’s agenda. It felt very strange… but the right to do that is what they pay for!

The blatant errors made me cross – especially the suggestion that Sam was refusing further radiotherapy… Yes, we know he ‘blames’ us for making him have even the one course of chemo-radiotherapy he endured – being inoperable it was  the only thing that could be offered for his tumour. But despite his resistance he did eventually agree to have it as the lesser of 2 evils and no-one can have more than one course of radium to the brain, precisely because of the side-effects Neon’s mother dreads. To make it look worse it was implied that he’s refusing proven means to use unproven ones… someone even commented he really should be sensible and allow the surgeons to operate, having missed the point that in his case they can’t! The only conventional treatment Sam has refused is an extended course of temozolomide which made him feel ill: he has instead tried everything else he can get his hands on, hoping against hope that something will work.  All credit to him – and at the moment he remains very well, praise God!

I was in danger of going down the Grrrrr! route again so I put away my copy of the paper and stopped reading the online comments; I just had to accept that this was the way we were being portrayed for editorial reasons and wait for the opinionated and non-sensical reactions to pass. Sam just laughed at it all and Martin and Becca wouldn’t even read the piece – it’s far less upsetting to ignore it. As usual Martin had a few people contact him with ideas for Sam to try… and a week later Radio 5 Live got in touch and Sam did an interview with them about some of the things he’s tried. We didn’t listen to the broadcast – we’ve all had enough now.

Is this really our story? No disrespect to Angela Carless, who always tells it with sympathy, but the general over-simplification and sensationalising of our heartache – it’s what the tabloids always do. Looking at the article I hardly recognise my brave son and brilliant husband: as one friend said, ‘it only shows the tip of the tip of the iceberg of who you really are!’ Well, I only have myself and my blogging to blame for this public exposure – and what was I expecting from the Daily Mail?!

Next day – as you may have noticed – I went into full retreat. For so long I have been writing everything in public, but a line had been drawn or I had fallen over a cliff or crossed the Rubicon or something… quite suddenly the grace, which had been seeping away for some time, had completely dried up: it all felt far too public, too embarrassing, too vulnerable – compromising our family security. As Martin pointed out, anyone could be searching for our names – 3 more TV producers had already been in touch not knowing of last year’s television interviews until we gave them the You Tube links:  the feeling of losing control of our own story was strong and at my wise husband’s prompting I temporarily closed down the blog. It felt really terminal – sad, shocking and devastating, the loss of a part of my life, something I’d been depending on – just like a sudden death!

Two weeks on I have come back to explain why I did it – but I don’t know if it is a resurrection or not. I kind of want to stay dead – I think I need a break and have done for some time, limping along trying to find a way to keep writing. Losing the outlet has been hard but good – a clean break, all the more definitive for being unseen in advance.  There was a season of grace for telling Sam’s story and sharing my journey and maybe it has passed for good in this form – or perhaps there are other changes ahead that I simply can’t see until I stop.  It’s not a punishment and it’s not a question of not being allowed to blog if I want to, but all that ‘ought to’, heavy stuff has to go. I am certainly very tired at the end of this amazing year and all I hear the Lord asking me is, “Do you still believe in your own story?”

So it’s time I went away and rediscovered it, learned to be quiet and rest and let my body, soul and spirit be restored – to just BE and not always have to DO…  Maybe that’s what I see for 2013 – a sabbath year. Then maybe, in an unknown amount of time, I’ll be able to write my story again the way I want it told, the way only I can tell it – rounded, multi-faceted, true, honest, grace-filled… and from the inside out.


About Sally Ann

True-story teller - words and pictures
This entry was posted in Life choices, Sam's journey, Something to say. Bookmark the permalink.

2 Responses to Sudden death

  1. I love the picture of you and Sam. And your courage and “grace under fire” inspires me…and, as always, your willingness to be honest and “open up a vein.” Oh Sally Ann, I pray one of these days we can sit by a fire with a bottle of wine and talk about everything!! Much love..<3

  2. Pingback: A time for mourning | Gone upstairs

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