The turning of the year

16.9.16 update

Gone upstairs

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…

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Seven year itch

7 year anniversary of sorts. I am still alive. What next?

Gone upstairs

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.

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A time for mourning

A year after Sam’s death I am writing again on a new blog…

Gone upstairs

Wherever there is loss there is grief – and grief is exhausting.  It may be hidden grief – subconscious sadness, buried pain with little outward show – or a more obvious storm of weeping.  Either way the emotional bruising has a huge and probably largely unexpected physical cost. How can I get out of bed and drag myself through another day? There is nothing I want to do, nothing for which I have any energy… I have lost my bearings and purpose and all is grey and pointless. It sounds just like depression – because it is: it is sadness with a reason. In fact in my case there are 3 reasons – a triple whammy.

The first ‘death’ was the ending of a season of work, blogging and ministry – a good ending, a clear finishing point, but still the loss of role and direction. A line was drawn at

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Saying goodbye

It’s a month since we lost him. It’s not the same as losing a child in a busy shopping centre or even a pet who wanders off. Forget the agony of the McCanns, always searching for Madeline or the posters on lamp posts for “Jake:missing 2 years”. In this case ‘lost’ is permanent. And it’s not as if we made an error and mislaid him – it’s more that he up and left us: he’s GONE.

‘Loss’ and ‘gone’ is what it feels like. People talk about ‘passing over’ or ‘passing away’- trying to come to come to terms with the utter impossibility that all that LIFE and intelligence and experience and SPIRIT seem to have dissolved into NOTHING. He’s gone ‘somewhere else’, they say, ‘to a better place’ – ‘he’s looking down on us from heaven’. ‘He’s happy now, he’s at rest’.  But to be honest, at first those words simply don’t help that much… Even if we have signed up to faith, we can’t really be sure what it means. Our daughter asserts that the philosophy she studied insists that body and soul are so interlinked that once the container fails there is nowhere for the soul to go – hence the appeal to ‘save our souls’. It can actually feel like that, despite all we believe about the spiritual realm.

I know St Paul’s declaration – that the dead in Christ have simply ‘fallen asleep’ – but it is better not to use euphemisms. No, we prefer to face it head on: Sam died on 25th November and he is dead and buried. Sam as we knew him has left the building, left our family, left a hole that will never be filled. His cold body  – the one I birthed, nurtured and hugged – is in the earth now and will never smile, speak or argue his point again. He was my only son and I loved him as only a mother can. He was my burden and I carried him. He turned blue, then white and waxen. It was horror and utter sadness.

The emotions are very mixed… part relief at the end of a very long journey, mostly grief that hits in ways you had never imagined.  Yes, I do trust that his essence lives on – “today you will be with me in Paradise”– but that realm is beyond us, unreachable, and in our worst moments a fairy tale. In my better moments it comes to me in a rush of certainty: “Sam is NOT dead! Jesus went to His Father and ours!” When I choose to trust Jesus’ words I have hope – hope of resurrection, hope of being reunited, hope for grace and mercy for my son and for ourselves. Those who find that leap too difficult may suffer more, I suppose – but how can heartbreak be measured?

Saying goodbye

How did it come to this?

Throughout 2014, the young man who defied death for 5 years continued to wake up every morning in his little house with his beloved cats, but some days he didn’t feel like getting up, let alone dressed. He continued to fight the inner battles and feed himself – a minimal amount; he lost weight and looked pale. His independence was too precious, his ego too strong to allow his parents to get very involved: what 27 year old male wants their mother sniffing around? He had faithful friends who suited his smoking, metal, XBox lifestyle and they visited him most afternoons. He had a very close internet friend in Louisiana and his mentor/healer Dean on the phone: he spoke to both of them every day. He continued to ‘study’ projects that were going to make him an internet millionaire while unemployment benefit paid (some of) the bills. It gave him some sense of purpose even though the family never believed the great plans would come to anything. The right brain carries executive function – with his great disadvantage in that area there was always a wall, he would always fall back and a few weeks later the whole process of “what’s the point and what am I now living FOR?” angst would start again…

So we don’t know how long the tumour had been regrowing in his right brain – especially as he had refused all scans for about 3 years! All we know is he seemed relatively well, reasonably happy most of the time, and denied any symptoms other than a bit of a headache sometimes – and he had his own remedies for that.  He had ‘beaten it’, he was ‘healed’, he was ‘post-cancer’ – though still damaged by the blight on his youth, which was made even more tragic because he should have been a bona fide genius in some field or other.

There is no doubt the mental effort required to keep facing down a terminal illness and remain positive was exhausting in itself. Fatigue is always a side-effect of mental illness. Sam always refused anti-depressants, though he did have a weekly appointment with a counsellor I found, so he could just talk: that took some pressure off me too. But his main approach to his diagnosis was self-help: to meditate, deal with inner turmoil, address issues that arose – usually to do with relationships – online or past or ‘people’ who couldn’t relate to him or understand him. He felt very let down by these ‘people’ he could never name –  quite paranoid really. He couldn’t empathise with others’ feelings because of his tumour, but he was often right in his criticisms of ‘so-called’ friends who didn’t make any effort with him. But boy, was he difficult – as his facebook friends often found out when he had one of his ‘rants’. His use of language was so brilliant you really didn’t want to be on the receiving end of his wrath! These were often times I got called on to ‘listen’ – even though that was hard at times, I know I was privileged that we were close. He was also really lovely to me and I have many precious moments to remember – as do his close friends. Once you got past the bitterness he was loyal and big-hearted – and he did forgive all those who had hurt him before the end.

About a month before he died the headache and fatigue grew worse but he put it down to a stomach bug that was going round and lay around on his sofa all day… not much change there then!  I didn’t realise he wasn’t eating or drinking enough, but when I popped in just before making a trip down to Devon for my father’s 86th birthday on 13th November, I thought it would be wise to call the GP for a home visit. She didn’t seem unduly concerned – according to Sam! – but told him he probably ought to arrange another brain scan at some point and should rest.

15th November, Sam’s sister went to visit him: his dad and I were still both out of town. She was so shocked by his state she dialled 999! And so it began… Although we cancelled the ambulance, realising hospital would not be the best place for him until it became essential, and spent the weekend as a foursome in his house – which he loved! we were all together as a family, visiting him! – we gradually realised that Sam’s vision and memory were actually a lot worse.  Computer kid couldn’t remember his password to get online – totally unheard of – and he was obviously physically very weak, especially on his left side. I did what mothers always do and fed him up with 3 meals a day, while we watched ‘Lord of the Rings’ together – as we always did. He remained in denial.

On the Monday 17th, just after Becca had caught her train home to Brighton, Sam was very sick and his headache obviously worse: I knew it was time to act. On phoning the surgery the doctor on call quickly contacted the hospital and arranged an emergency scan and admission. This time we chose to go to Leicester instead of Nottingham – Martin’s work environment and much more convenient – and by the evening the patient was in a bed in the Leicester Royal Infirmary and Martin’s family on their way up from Sussex with Rebecca, who’d only been home a matter of hours!

I won’t go into all the details of the next 9 days… Suffice to say it was a roller-coaster of emotion: severe In the hospital beddeterioration, fits and incontinence, appalling scan results, family tears, putting in a drip and starting steroid treatment, family cuddles followed the next day by some improvement in consciousness, night-long hiccups, debate, anger and demands for discharge… Then on Wednesday afternoon discharge home, and on Thursday morning forcing himself out of (borrowed, downstairs, hospital) bed against all odds to prove he could still look after himself and then shocking us all by walking alone to the CINEMA. He went again on Friday and Saturday, old friends came to visit on Sunday andheadache various others had long talks on the phone – while Sam continued to deny there was any problem and sent his parents away for ‘fussing’ – but was still unable to get online or even remember his phone number. Perhaps part of him knew what was happening – to our relief he was willing to have nightly nursing cover ‘just in case’ so we could go home to bed. Despite a long talk with the family doctor he was now refusing ANY steroids so we knew it wouldn’t be long… until there was a final night watching a movie with Dad, a final morning when Mum had to call the ‘Hospice at Home’ nurse, a final emergency journey up from the south to find her brother already unconscious… a houseful of family and a faithful lodger eating sandwiches, a cat on his bed, the slipping away of life, breath, heartbeat…

Goodbye, Sam son. We’re so proud of who you were – your courage and determination, your big heart and amazing – flawed – brain. Thanks for everything you meant to us. Into God’s hands we commit your extraordinary spirit.

Goodbye

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The snare has been broken

July 2014: we are in yet another season. The Haitian experience is behind us and my hair has grown back salt-&-pepper grey. Above all, Sam remains well in his house in Loughborough. But we have (partly) relocated to the city – for the next step on the journey…

Longing to escape...

“We have escaped like a bird from the fowler’s snare; the snare has been broken, and we have escaped”. Psalm 124v7

freedom

Escape… it’s what this blog has been about. I started it at a point of deep frustration, trapped by circumstances with no possible exit. I was thrashing about emotionally, looking for ways to cope, ways to accept the boundaries that having a son with a brain tumour put on us. We had to ‘stay put’ in our too-large family home in order to be near him. A shadow lay over the future and planning seemed impossible. In addition my husband’s working hours left us little time together: I was lonely and at a loose end.

Having never had a career I’ve been trying to re-invent myself for the past few years, desperate to find a new lease of life like so many of my friends seem to have done…

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Not a pretty sight

It’s funny how all the threads of my journey come together again in this sponsored ‘headshave for Haiti’ project. 2 weeks on I am grappling with identity issues that hark back a long way…

Headshave for Haiti

It’s almost 2 weeks since my head was shaved and I haven’t been able to write anything about it until now. In fact, it struck me this morning that I first used the name “Redhead” to hide my true identity when publishing the story about my mother’s death on-line in 2009 (you can read ‘Byllie’ here) before it went on to find permanence as my nom de plume on a poetry site set up in the Spring of 2013 with fellow wordsmith Ray (find Ray & Redhead here). So it’s not really surprising that giving up the RED has had an effect on my writing!

However, there is a lot more to it than that and it’s taken me a while to process – wordless reactions, unforeseen emotions, unknown territory. At last today the computer screen takes it’s old, familiar place once more as a friend who’ll sit…

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Tonight’s the night!

Update! The BIG DAY is here:

Headshave for Haiti

It’s midday on Saturday 5th October – a long awaited day. Martin is playing Haitian music while trawling the internet for clips about the island. He has found some real shockers…😦 I’ll put them up on the Haiti page soon, when I can face it, but it’s one step at a time on this journey and I already have enough to cope with for today.

In stark contrast to the sad and terrible stories of injustice and pain, the island music is full of joy and life. Perhaps that just serves to underline all that has been lost but it also gives hope of what can be recovered: we’ll play some this evening for those who pop in for the hour to watch me ‘lose my head’!

Tonight’s the night  – it’s gonna be alright?!) For some reason I have Rod Stewart going round my brain! ‘cos I…

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