annanotbob2's Diaryland Diary

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Hope

Honestly, being tired is over-rated. By the time it gets to time to write my blog I'm fucking brain dead but I hate not writing so I'll give it a go in the ad breaks of Ackley Bridge, one of my fave TV shows - though to be fair I loved Missy and Nas and her from Eastenders as the head so not quite as keen - bloody kids, they will grow up. [Later: no, I've come round to this series. Going to watch it in installments and not binge it]


So for therapy I'm meant to be completing sentences and I've got stuck on 'hope' so I'm going to explore it here and see where I get to. The very thought of hoping for something generates a scared fluttery feeling in my belly and the desire to stop, at once. I never used to be like this - I was always an optimist, not bothered if things went wrong as I knew I could find a way forward and I'd have enjoyed the imagining of it going well in the meantime. If it all went tits up I could always find something else to focus on - when it was really hard on my own with the kids I went to Uni as a mature student which made my days more interesting and would lead to a decent job. When I graduated and none of the jobs I could do paid a starting salary that would cover my childcare costs, never mind rent and food for the four of us, I researched until I found professional courses that had grants. Only two within reach - teaching or IT. I knew I couldn't be sitting at a screen all day and didn't really think I could be a teacher but I gave it a shot and it turned out I loved it and was good at it. 


Getting off topic. Hope. When did I fall out with hope? Sammie. Relapse and remit MS that you're supposed to die 'with' not 'of'. When she was first diagnosed we thought it would be an episode now and then, which would be horrible, but then back to how she was. I don't know how quickly we realised that it wasn't staying like that, that she remitted back to just a bit less each time. The first thing she lost was walking on the shingly beach, which was huge - she was born on the coast, loved the beach, all our beaches have a broad band of shingle before the sand, if there is any sand. So terrible to not be able to walk on the beach. Then she needed a stick to walk and so it went - twenty years from diagnosis to death. I didn't completely lose hope till she had to move into a care home - when her mental capacity took a sudden nosedive and she forgot how to use the phone or the laptop, then she forgot who she was and why she was in a wheelchair and started to try to stand up, falling to the floor to lay there for hours, unable to call for help. If her partner had given up work to look after her they would have had to lose their car and living in a tiny village with no shop, they couldn't manage. They lived in a mobile home - I had to sleep on the floor in the living room when I stayed so I couldn't move in to look after her. My home was all steps so she couldn't live with me. 


That was when I realised that any prospect of a decent life was gone. I still didn't realise that she would die so young, but that became clear fairly quickly. Up till then I'd kept on trying to find something good to hold onto. Walking with a stick, no problem, just a bit annoying. Needing a wheelchair, a bit more annoying but not the end of the world - loads of people using wheelchairs have good lives. We went to London on the train, to the theatre, to the London Eye, to Tate Modern. But gradually it was all gone and there she was, quadriplegic, unable to talk, unable to signal - she did good yes/no answers for a while, looking at this hand for yes and that hand for no, but that faded too. 


I got into a big row with one of the care workers, also called Anna, well Ana, who said I had to keep optimistic, to stay hopeful. What bollocks. How dare she say that? Hopeful of what? An easy death - was that what she meant? 


I remember the first time I saw an article in the paper about a cure for MS - that was the headline - something or other as a possible cure for MS and for a moment there I had a joyful flash of hope that she could be cured, that we would have our bossy, clever, kind, busy, funny, wonderful Sam back. In that moment the reality of all we'd lost hit me hard for the first time - it had all been so incremental that this was amazingly the first time I viewed it as a whole. I had hope then, for a few fleeting moments  - of course the headline was bollocks and the article was about some scientists who were starting to research some new possibility - they'd just got funding, so a) it might not come to anything and b) even if it did it would be years and years away - in fact there's still no sign of it. 


That little moment, from reading the headline, feeling the hope, to having it dashed, only lasted a few minutes but it was one of the deepest, most painful events of my life. That was when I decided that hope could fuck off, I was done with it. I don't think I've quite descended into pessimism, I bloody hope not, but my days of sunny optimism are gone. 


Although here I am, having therapy, which has to be some kind of hopeful endeavour. But I still don't like it, hoping. 

11:45 p.m. - 12.07.22

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