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A Hole & A Scar

January 22, 2019

The word that keeps coming up for me since the operation is “released”. I’ve been released from something.

The doctors have all been of the belief that the tumour had been present in my urachus for several years. Of course, nobody can put an actual timescale on its growth but my sense is that it’s been there since 2010. I named the tumour D****, after the social worker from 2010 and part of the release is that I feel a huge part of her legacy from that awful experience has now been exorcised.

Yesterday I had the staples removed and last night I was able to have my first bath in a fortnight. I laid there for ages with a flannel gently massaging the scar and a whole kaleidoscope of memories swirled around the bubbles.

I remembered all the times in 2010 I had to be completely inauthentic in order to survive the wrath of the LA. I recalled having to dilute myself in meetings to try and guarantee Steven’s safety. I recalled having to present a tiny, miniscule version of myself because anything larger was far too threatening. And then there were the odd occasions when I was totally authentic and how dire the consequences were for Steven. There were two occasions in meetings when I spontaneously laughed at the ridiculousness of what I was hearing and realising instantly from the reactions that I had just knifed them through the heart. Then there was the time I launched into a long speech about the several ways they were breaking the law but immediately saw that I was making a huge mistake in making such a huge, articulate challenge. The price that both Steven and I paid for my congruence was dire.

I dabbed myself dry after the bath and realised under the scar feels very different. There is a hole. A space that had been filled by the tumour of inauthenticity. I’ve been released of it and I’m buggared if I’m going to let it grow back.

I haven’t taken leave of my senses. I’ve still got to deal with the LA in the future and know that truth is very problematic for them. Tactics are necessary for survival and to prevent revenge attacks and it will be appropriate to present a Neary lite version of me at times. My mission now is to work out how to do that without turning myself into a character from Lilliput. The good news is that I don’t have to deal with the 2010 gang anymore so there is less chance of old stuff being reactivated.

The other question I’ve asked myself is how much I’ve been feeding the tumour. Obviously there has been painful shit to work through and some of the scars will never go completely. I still yearn for five minutes in a room with Whistler’s Mother, especially if that room is a conservatory and I have a candlestick in my hand. She tried to destroy my beautiful, trusting son and revenge is never too far away. But is that feeding the cancer?

At the moment, I can’t imagine ever telling the Get Steven Home story publicly again. It feels like that motivation came out during the operation too. And let’s face it, the Deprivation of Liberty Safeguards are shortly going to be replaced by the Liberty Protection Safeguards, so it’s an irrelevant story anyway. As all relevant stories should, we’ve become a museum piece and that’s fine with me. I’ve got this large internal space where the urachus and the tumour once homed and that space is mirrored externally – what do I write and talk about now?

My apologies if this all reads as self indulgent bollocks. That’s my point. I’ve come to see myself as a writer and a speaker and I no longer have a clue what to write or speak about. Please bear with me whilst I experiment in filling the new space.

I still keep wrestling with the idea of writing a very black comedy. It would take the Committee Room Five stories into an area that would shock even Deidre Trussell. I fancy writing a fiction based on all those fascinating stories I uncovered whilst researching my family tree. I speculate whether I could ever carry off a stand up routine. Is the world ready for some Squatty poetry? Or do I carry on writing about the stuff I’ve always written about. Writing this blog has never felt like a component of the tumour.

The answer, I guess, has been the mantra of the past six months – who the fuck knows where this is heading so just experience the ride.

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4 Comments
  1. alice moore permalink

    A definite sense of moving on.

    Black comedy sounds good.

  2. Weary Mother permalink

    Mark

    Your honesty and bravery- your love and brave resilience as a dadr, has sparked a renewed strength and courage in us – the other mums and dads.

    Today, we remember the millions who died ‘avoidably’- in the most dreadful circumstances at the hands of others – or from the active passivity of others: people who died just for being different.

    In that head count were many, many thousands who died just because they had a learning disability.

    Today our sons and daughter can thrive from professional respect and good and caring support or be denied access to a full life span from an array of neglects. others are shut away for decades out of sight – left in isolation keening for their homes.

    You and many others have courageously put a flash light into these dark corners.

    Predjudice – whether dogma and or ‘just’ incompetence based unkindness, can return into any organisation. Our job as mum and or dad of a vulnerable son or daughter – is never – will never be – done.

    Organisations hold their memory on file yet we still challenge on for better, knowing this.

    Good people are appalled at cruel or stupid decisions made by former incumbants of their job…and bring better and kinder lives for us and ours, for a while.

    Relatively recently – a decade and more ago, Policy decisions were made that echo on in many families – ‘dogma’ based damage done that cannot ever be fully remedied – lives that live on in broken bodies and deep grief..

    Kinder people have come and gone in these organisations – leaving some space for families for a while, to challenge for better – or to grieve.

    There will always be the next ‘consultation’ of a sort, to bring us worse or better – and we – us mums and dads – can have cool respite or a scary battle to start all over again.

    There is capacity for good and for kindness and compassion in all of us. …somewhere.

    But – one can only wonder why it gets so lost by so many people so well educated and paid – only to protect and care for our sons and daughters.

    One can onlly wonder why it is left to us, weary – loving mums and dads – to put aside our fear – again and again to shine this light into the same cruel corners – places where these paid people initiate. carry out or avoid seeing – pain done to others. .

    The next turn of the Pp/ organisation dogma or status (etc etc) wheel routinely brings better or worse for us and ours; it can bring more anguish and more fear – or a refreshing respite – for a while.

    We know we must make this same light shine ever brighter and longer into these cruel corners – if our – and others – sons and daughters are to live well – or – at all,.

    It will all – always, require resolute love (easy bit)…., and yet more dogged sacrifice, comassion and courage..

    I requires us…,

    For we will remember.

  3. Weary Mother permalink

    sorry about all the typos xx

    • Pauline Thomas permalink

      So true Weary Mother.

      It hurts to know that when our loved ones go into state care that they will never be anyones’s ‘first priority’, That ‘first priority’ only exists within loving families. It hurts to know that families have to ingratiate themselves to people who are given power by LA’s who really don’t care what happens to your loved ones. Mark’s experiences of having to be someone else. rather than who he is, to satisfy the ego’s of the people handing out the ‘sweeties’, is shameful. However, Mark we know is better than them. To doggedly go on fighting the system takes guts. To overcome the cruelty, put downs and down right hostility from people paid to help families who have loved ones with LD/autism, takes courage. He has that courage.

      Steven’s life is so much happier. Mark has been vindicated.

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