I’m not really going to say much about this because it’s quite miserable, but last night I had the crappest night’s sleep ever. I barely got a wink. I went to bed about ten thirty, needing a pee, but after that my body simply wouldn’t stay still – I just couldn’t relax. The way I kept moving caused me to panic, just making matters worse. That lead to hours of tossing and turning, getting up to use my computer and going back to bed. It was horrible. In the end I asked Serkan to call 111, mostly out of desperation, but that did n’t help much. In the end I got a couple of hours at about four, before the doctor from 111 arrived and woke us both up again. Needless to say I’m currently knackered, and really worried the same thing will happen tonight. I’m curious, though: has anyone else with Athetoid Cerebral Palsy had this problem?
You don’t have to be Roland barthes or Ferdinand de Sasseur to decode this:
Yesterday was a bit of a tough day. I caught something, probably on Wednesday, possibly in the pub. I got diarrhoea almost instantly, and struggled to sleep that night. Things got worse and worse, so that yesterday I could hardly do anything. I’m bloody fortunate Serkan is currently living with me to help me sort stuff out. I was so knackered from not sleeping that I could barely move, and controlling my body seemed more difficult.
Today, though, with the help of a no-fat diet and some pills from the chemist, I feel much better. It was probably just one of those short term, 48 or 72-hour bugs which the body fights of quite quickly. Nonetheless, it was quite an unpleasant experience which I suppose teaches me to be a bit more cautious when going to the pub.
I think I ought to just flag this blog entry by my old Onevoice colleague Beth Moulam up. In it, she writes in some detail about how she organises her personal care. She and her mum run it rather like a company, appointing Team leaders who schedule who does what when. I must say my approach to care is rather less formal and more relaxed: I just email or message my PAs to see who can do what when. I find it works, although I can see a day coming when I need to adopt a stricter approach.
Needless to say, I was rather disappointed in the outcome of the cricket yesterday: after reaching that huge total on Saturday and then making India follow on, England should have won easily. Unfortunately the weather had other ideas. We should now all be enjoying warm August sun, but instead we had a torrential storm. When you recall that just three or four weeks ago, we were all complaining about how unusually hot it was, it’s hard not to get the impression that something very, very strange is happening with our weather.
It’s becoming clearer and clearer that global warming is now a reality, the effects of which go far beyond test matches. We are now seeing exactly the kind of extreme weather the scientists predicted. More carbon in the atmosphere means more energy in the weather system, resulting in everything up there becoming more extreme (something like that, anyway). But instead of trying to do something about it, the present leader of the world’s biggest economy refuses to admit it is even happening. As Noam Chomsky explains here, the way in which Trump and others carry on polluting the atmosphere, prioritising their own money making over the need to repair the environment, make them the most dangerous people ever. The Greenland ice sheet is shrinking, but Trump authorises oil drilling in nature reserves.
Something must be done, surely. Donald Trump isn’t just a danger to America but the whole world; he embarrasses all humanity with his greed and arrogance. We should all be very concerned indeed about what happens there in November; the world cannot afford four more years of this self serving piece of shit in the White House. Yet with Trump openly admitting that he won’t accept any result other than his victory, this just isn’t cricket.
Amazing fact of the day: after about four months of living with me, Serkan knows two words of Klingon – Qa’pla and P’tahk – and now uses them daily, yet has never seen an episode of Star Trek in his life, and wouldn’t know a bat’leth from a bar of gold pressed latinum. He probably just picked the words up after hearing me use them. Maybe next I’ll try to teach him some Elvish.
I had quite a weird but interesting thought earlier. For some reason, I was thinking about American wrestling, and it’s strange, real-yet-fake relationship to reality. It’s clearly a type of performance, but claims to be real; it’s obviously pantomimic, but seems to take itself deadly seriously. The people who watch and follow it, especially in America, seem to see it as valid as any other sport, and insist that what they are viewing isn’t a pre-planned, convoluted live action punch and Judy show but real. That implies a cultural suspension of disbelief, where an entire group of people actively chooses not to believe what is in front of them in favour of an obvious fiction. I wonder: can we see the same culture in supporters of Donald Trump? There too we see the same absolute refusal to believe in what everyone else is obvious, and the same ultra-masculine, violent, angry approach to reality which seems to prise bravado over substance. I wonder if the type of culture which underpins American wrestling can be seen in support for Trump. Could one somehow explain the other? After all, Trump himself appeared in an episode of wrestling, and behaves almost like a wrestler, projecting an image of himself onto the world full of bluster and boastfulness, yet which is ultimately a fiction. I must say I find it very strange indeed, and the way it seems to prise violence and confrontation over respectful, nonviolent approaches to life quite worrying.
I dreamt about Lyn’s house last night, empty and deserted. In the dream I remember wanting Lyn to come back but knowing she couldn’t. I woke up and almost burst into tears.
I just came back from a nice long stroll along the Thames and up through Greenwich. I now love this city, it’s culture, and how it feels different from place to place. Yet it hurts to know the person who introduced me to this wonderful metropolis is no longer here. I keep thinking about that bungalow in Charlton where I lived for almost ten years with the most wonderful person I’ll ever meet, now empty and waiting for it’s next tenant. I’m not pretending we hadn’t spit up, but part of me feels that Lyn should still be there, still getting up late, still making music and DJing her radio station. I thought I’d be popping over to visit her for years. The knowledge that she isn’t there any more feels utterly wrong; it feels like an era has ended permanently and with a devastating, heartbreaking finality. No more music, no more slurping coffee through straws; no more watching Dom, Mitch or Paulo slowly feed Lyn her dinner, before she expertly pilots her wheelchair backwards with one foot into her studio. No more marvelling as Lyn controls her Ipad with her nose better than most people can with their fingers. No more watching the most patient, incredible, remarkable person I’ll ever know live her life on her own terms, overcoming barriers many others would have thought impenetrable.
A new person will soon move in, and in a way that bungalow will become somewhere different, as if all the memories which happened there will be erased. Or that’s how it feels to me, and that hurts. That feeling frankly hurts more – far, far more – than anything I have ever felt before. That’s what I dreamt of last night: the thought of that empty house utterly haunts me, and I think it will for a very, very long time.
I found another cool pub yesterday, or rather the day before. On thursday I decided to do a little research into the racist moron on the tube train, and found out he was called Sammy Steele and that he lived in Mottingham. Checking the map, I found that isn’t far from Eltham, so I decided a roll was in order. It is a nice, leafy suburb of well maintained houses: to get there I needed to go down Court Road, which is lined with very expensive looking houses indeed. There, I just had a little look around, before popping into a pub for a coffee and heading home.
The Prince of Wales, Mottingham was nice and spacious with friendly barstaff. I got chatting to the barlady, and saw they were showing the cricket. Being Thursday, it must have been a repeat, so yesterday afternoon I headed back there to see if I could watch any of this week’s test. It had been a bit of a busy lunchtime being interviewed over Zoom by the guys at GAD – more on that soon – so a bit of chill time was in order. I got there at about half three, got out of my chair, and spent the rest of the day sipping beer watching some outstanding cricket.
The place was a bit more full than the day before, and I must say that over the course of the afternoon I overheard some of the other men in there spouting the type of moronic, racist bollocks we hear from the guy on the train. I got so uncomfortable at one point that I almost left. A bald man was sitting with them, who turned out to be one of the bar staff, possibly the owner. I spoke to him about it shortly after, explaining my views, and he assured me it was just banter. Yet we hear that type of highly provocative banter all over the place these days, spewn by cocky, working class men. They see theirselves as the ones being discriminated against while all the members of minorities get all the privileges. It is too easy to dismiss such ideas as absurd. What concerns me is the growing social tensions underlying them. Perhaps it is in such alcohol-fuelled gatherings, with poorly educated, working class men bouncing increasingly xenophobic ideas off eachother in pubs, that we see the origins of the type of cocky dickhead we see getting knocked out on that tube train.
Today might be a good day to put something right which has been hanging over me for the past twenty years. It’s kind of a confession concerning my GCSE maths. I may have mentioned on my blog a while ago that I had to resit my maths GCSE because I didn’t get a C on my first attempt. That was because I was put in the lower tier, where the maximum you could get was a D. That, I want to now admit, was my fault. Mr. Oliver, my maths teacher at Hebden Green, was initially going to put me in the upper tier (I forget the correct terminology, but you know what I mean) which would mean I could get the standard five C’s. But lazy idiot that I was, I asked him to put me in the lower category. At the time, I was also doing A-level English, so I didn’t want to study maths as hard as I should have. That stupid decision, which I haven’t told anyone about, meant my parents hired a private tutor, Mr. Phillips, to make sure I got a C the next year.
The thing I feel most guilty about was that this reflected badly on Mr. Oliver. He was a good teacher, and the fact I didn’t get the right grade the first time around was my fault, not his. I was young (eighteen or so) and stupid. That and the fact that I then started, a few years later, mouthing my head off on the web and in the press a few years later about how special schools failed students probably explains why Mr. Oliver seemed so furious with me when I once visited school about three years after leaving, and hasn’t spoken to me ever since. I feel bad because he was a good man and great teacher, and I’d like to get back into contact with him, if only to apologise and put things right.