A Hole & A Scar

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.


No Time To Waste.

I’m home from the surgery. The brief headlines of the experience are that I am now minus a quarter of my bladder, my urachus, my belly button and most importantly, the tumour, which one of the surgeons described as the size of a small melon. I won’t know until the biopsy results are back in a couple of weeks if I’m now clear of cancer but the consultant seems engagingly upbeat about how the procedure went and the future.

I can’t write much more about the experience. So much has happened in the past seven days that I’m not sure I’ll ever truly get my head round everything. There were moments of awesome inspiration. But there were also moments so disturbing or degrading or frightening that I don’t think I can write about them. They are too unbearably private. The marked differences between the two wards was just one of the disturbing aspects. The first two days when I was in intensive care felt safe and compassionate. There were lots of deaths to witness and although my health felt more stable than most of the patients there, I still had to accept there was a good reason for being in ICU. On the third day I was moved to a general ward and the mood was completely different. Frankly, I was terrified and felt very unsafe. One night, unable to sleep, I spent an hour walking up and down the corridor and didn’t see a single member of staff during the entire promenade. Alarms were going off. A female patient was screaming the ward down but we were totally alone. I couldn’t wait to get away.

I’ve had a lot of time to think. I’m trying to learn who I am now. There were lots of messages that went way beyond just little old me and I thought a lot about the world of learning disability and my roles and responsibilities in the future. One thing happened during the second day in Intensive Care. I had been following Sara Ryan’s life tweeting of the Human Rights Committee gathering with the NHSE and CQC top dogs. It was depressing reading. As one MP despaired, “They’re just talking gobbledygook and theory”. I was interupted when a physiotherapist arrived, wanting to take me for my first post operation walk. When we got back my 1:1 nurse had changed my sheets. A few minutes later the nurse realised she’d misplaced her watch and during the ensuing search she even went through the waste bag with my dirty sheets in. I was back laying down and resumed following Sara’s tweets and saw a large message appear before me – No Time To Waste. (By the way, the watch was eventually found. She’d left it in my newly made bed and I was sitting on it). Learning disabilities is attracting a lot of press and media attention and we’ve got to make these precious openings count. And firstly we have to know who is of use. I’d say people fall broadly into three categories: the allies, the completely ineffectives and the enemies. The allies come in all shapes and sizes but to me, they are obvious. Ian Birrell who has published an article every week for the past few weeks. Jayne McCubbin and her relentless, human reporting on BBC breakfast. People like George Julian who do goundbreaking work without resorting to trumpets. And even quieter in the background, folk like Kate Mercer, Sam Sly and several others who just get it and get on with the job. They make a contribution and by heck, do they make a difference.

I don’t believe there are many out and out enemies. Most of the harm done is by people doing nothing. Keeping quiet even when their job depends on them doing otherwise. But we must spot the enemies and at least keep our third eyes on them to watch what they’re up to.

The biggest group is the ineffectives. Talkers, not walkers. I feel very strongly that we need to disengage with them. If there is no time to lose, these people use precious energy and that is unnecessarily costly. You don’t have to feel bad about disengaging. The ineffectives will always find someone to engage with. It just doesn’t have to be you. One note of caution is that some people by virtue of their position may appear ineffective but are actually in the harmful category. Watching Ray James give evidence to the Human Rights Committee, he came across about as useful as a fart in a paper bag. But when you remember that he is head of learning disability for NHS England, his ineffectiveness is shameful. By not doing his job from a position of great power, he can be seen as an enemy rather than an ineffective.

The most I slept each night in hospital was two hours. Partly because of the noise, lights and constant interruptions. Partly because of the terror of feeling so unsafe. Last night, back home, I slept for over ten hours. I had a short snippet of a dream that seems to fit in with this post. In the dream, a group of families and people with learning disabilities were going on an old fashioned charabanc day trip to the seaside. Late afternoon some of us meet up in a pub for a relaxing get together. A drink, a chat and possibly for the daring, a game of bingo. The group were purloined in the pub by a well known social media commentator trying to engage us in a discussion on the potential of personal budgets. Somebody put some Style Council on the jukebox for a singsong but this guy droned on and eventually we all gave up and joined in with his agenda. It couldn’t have been a more ineffective use of our time.

Allies – come on board. Ineffectives – sod off on some other trip please.