16 Aug 2015

Post 405: Is ignorance bliss?

I was rewatching ‘Band of Brothers’, which might be the most harrowing and humbling series I’ve ever watched and I think one of the characters asks ‘is Ignorance bliss’? meaning if you don’t know about how awful something is, do you just not worry about it? By that token, I should shut up. I would however urge people to watch it, as long as you’re not squeamish. It’s not horror. I think we’re most afraid of terrible pain and dying or seeing/hearing our friends and family have to go through that. Band of Brothers does that in minute detail. There I was shocked at how people lived in 1960s America in Mad Men. That was nothing compared to the 2nd World War. It redefines bravery.
Changing the subject, a recent friend saw this video of my walking practice in 2010 and she said ‘you can walk’ – can no-one else see why doing this 3 times a week was killing me? And more importantly killing Ian! Ian probably still wants to kill me, and I probably still want to kill him but the hate has dissipated. I’ll give you a clue, this was after two years of living here – I was getting no improvements and several actual neurophysiotherapists had told me I’d never walk again. Is changing my physio routine to what it is now really ‘giving up’? IS IT FUCK. How many actually physically able people do not train 4 times a week? OK, I probably drink too much but I restrain myself from eating whatever I want!
Giving up would be not getting out of bed in the morning, and not spending most of my money on other people. People don’t understand the chronic fatigue that has gone with this brain injury. Even neuroscientists and other stroke survivors don’t seem to understand it, but these are the facts: I’m too tired to do anything but I still do them because that is what has to be done. People these days use tiredness or ‘potential tiredness’ as a reason to get out of anything. I have lost count of the number of gigs I couldn’t go to because people who I thought were taking me or would take me decided their tiredness and wellbeing was worth more than my tiredness and how much tickets might have cost me in both pounds and energy.
I believe in never letting anyone down. That has never changed for me. My loyalty to my friends and family has never changed. Life is hard enough when you have to try this hard, and people still think you can do more or worse, have ‘given up’.
OK, got that off my chest, better try and make this at least bearable to read. It’s full of f*cking complaints again.
Well, Phil, who I met a couple of years ago on a local writing course is coming round to drink wine, Shaun and Renae are over from Melbourne as are Stevie and Gnomes. They somehow fitted me in to their absurdly busy schedules and I’m off to the Proms with Ched and Terri in the evening. I haven’t been to many proms this year because logistics are difficult. Despite my parents loving it, it is a huge journey for them and I want them to continue looking like they’re in their mid 60s despite being well into their 70s. I may be ‘a retirement project’ for them now but this should be their opportunity to relax after a lifetime of working their arses off, even if the word ‘relax’ doesn’t seem to compute for them. In fact they’re in Maine right now – most people would consider that ‘relaxing’ but the emails I get from them make it sound like they’re doing more over there. That’s just their way!
Now I often talk about what I’ve been up to.
This is Proms season, and I love the Albert Hall and my friends Ched and Terri are taking me to see two Sibelius pieces Terri says the word Sibelius sounds like a sexually transmitted disease but that one of her Best memories of the Proms for her was last summer when we’d just seen Holst’s glorious ’Planets’, and just as the 2nd half was beginning, Terri says, ‘the 2nd half is three pieces of Shoenberg’ and I said slightly too loudly ‘I suspect these will be SHIT’, now sound carries in the Albert Hall and I had tried to whisper but it is difficult controlling the volume of my voice. Poor Ched and Terri – who was this rude oaf they’d come to the Proms with? I was right too, it was sh*t – I’ve said it before, you take the rough with the smooth at the Proms, and since then, as is the nature of British humour, we find what is sh*t funny, I have been trying to capture on my ‘slightly illegal Prom videos’ some of the comedy ‘modern pieces’. This was a similar sound to the Shoenberg, and was funnily enough in the first half to ‘the Planets’ a couple of weeks ago –I don’t know how the Orchestra even plays this – I christened this ‘Poulenc’s bag of spanners symphony in A flat horror’ , likewise this, Qigong Chens ‘drowning cat concerto in dead cat flat’ - just odd. It was all forgotten for the Pete Tong Ibiza Prom with a group of mates which was glorious
I dedicate the good parts of this post to my friends Chris and Alexis Dugdale. Chris is the brilliant magician who has sometimes performed at my birthday and Alexis is his amazing wife who has been diagnosed with MS, a brave lady, almost warzone bravery, more than ever , these guys will want the support and love of their friends and families. It’s how I have managed.

10 Aug 2015

Post 404: Really?!

Awful training for Monday. Done. Just got into a hideous row about politics on facec*nt that I really don’t want to be in, so better post this.
Really? Is a question I often find myself asking, particularly of myself. I promised myself (it’s all about me again, sigh), when I restarted this that it wouldn’t become some sh*tty review of what I happened to be watching but that’s bound to happen, in fact read on, it will! I also buy into the theory that saying nothing makes you the bigger man. Well big only refers to my height these days obviously. Being the bigger man and staying silent is another thing to add to my list of things (A long list). Until the day when I actually get a medication that does something (oh dear, that’s another complaint)
Someone has already told me how writing a post complaining about complaining, full of complaints doesn’t make any sense, difficult to argue with that, perhaps I should just f*ck this off?!
It then occurred to me that autobiographical writing is two things, it’s either fact reporting, which can often be interpreted as bragging, and a running commentary of everything else. That running commentary is often interpreted as a stream of complaints wishing things had been better. So without a story involving superheroes, spacemen, zombies, demons etc, it’s not hard to see why I called it a day on this after Post 402. You see, that’s another complaint.
I said before that I was more of a book person but when your eyesight and concentration are f*cked then TV series are what you’re left with. My imagination is now pretty sh*t. Obviously, I devoured the fifth season of ‘Game of C*nts’, where it’s true ‘everyone fights to sit on the world’s most uncomfortable chair’ or as my friend Ched said ‘f*cking dragons’ –despite that mixed appraisal, most workawayer’s manage to watch it all – with or without me. It is compelling stuff. Even more so because everyone is so unpleasant.
The Soprano’s is long gone, despite it’s brilliance as is the brutal horribleness of Boardwalk Empire or ‘just like Bugsy Malone except using real bullets instead of splurge guns’ [according to Frenchy]. I have now moved on to Mad Men which I have been pretty shocked by despite it not having subject-matter that would ordinarily be considered shocking. I am not the best politically correct feminist in the world but People in the 60s were f*cked. For most of the people reading this, surviving the 80s was a miracle, and that was mostly the haircuts, nevermind being bullied at school.
In today’s technology driven world, being bullied is about having your feelings hurt when someone disagrees with you online. We consider broadband going down a breach of our basic human rights, I know I do, but I then get this damnable sense of perspective.
I watch a lot of these HBO shows and the more I watch them I think that dramatising something awful is the formula that 90% of the time works everytime. The Soprano’s and Boardwalk Empire, who knew that organised Crime was so grim? Um, everyone!
Mad Men seems to be about alcohol addiction, sex addiction (without the ‘Bewbs’ HBO resorts to (effectively in my opinion)) and feeling in total control just as ‘talking therapy’ came along as the 60s way of attacking depression (in 30/40 something men, depression and fatigue were seen as weakness), that and the unbelievable lack of rights or any life afforded to women, minorities, poor people, fat people, ugly people, the disabled, the mentally ill etc. It is pretty wrong. I’m sure Ayn Rand would say it all made sense. Caveat – I used to believe Objectivism made sense
There seems to be one antidote to depression, love – yes that’s right, love. Romantic love, or the type a parent has for a child. Everything else is just a finger in the dyke.
The reason people watch Mad Men, is to be shocked by the next moral outrage, I know it’s a dramatisation but you can’t believe that it was actually like that! People in Mad Men are horrible sociopaths. Donald Draper may look like a Matinee Idol but he is an awful Human. The good bits are how The World reacts to pivotal events for humanity, the moon landing, the Cuban Missile Crisis, JFK’s assassination.
It is also an abject lesson about how badly people come across if they lie or pretend to care about stuff just to impress other people which seems to be a big feature of today’s social media driven world. If you tell anyone, I MEAN ANYONE that they’re arguing about something they don’t really believe in or can’t logically prove, watch them go mental, or better still accuse you of bullying.
Here’s a list someone posted about living in London that made me laugh along with a couple of stereotype maps. I hope to always find something like this because typing is a killer. The list was obviously compiled by a female hipster but it applies to a lot of people. At least being in a wheelchair doesn’t mean contending with a lot of this shit anymore ( I have bigger problems to be sarcastic about):
1. You’ll never get that excited about getting paid because you know that a couple of days later half of that’s gonna fly straight back out again and into your landlord’s bank account. Awesome.
2. Citymapper will become the most important app on your phone and when you visit cities that don’t have it you’ll be, like, HOW DO I GET AROUND I AM LOST HELP.
3. You’ll basically do anything to avoid changing at Bank. Sure, I *could* change at Bank and be there on time but yeah, nah, I’ll take the long way round ta.
4. Nothing is more soul-destroying than looking for a room to rent. NOTHING. Not even the sob-fest that is watching the Notebook comes close to how your heart feels when you’ve just gone to look at yet another hell-hole with a £800pcm price tag.
5. Blowing black snot out of your nose doesn’t mean you’re dying. It just means you’ve been breathing in pollution all day and, instead of travelling straight into your lungs, some of it got stuck in your nose! HURRAH.
6. Getting a black cab home after a night out only really happens in movies, or if you’re super rich which, as we’ve already discussed, you’re not. Night bus it is then.
7. The ONLY place on Brick Lane to get a bagel from is Beigel Bake. I *know* the queue’s shorter in the other bagel shop but THIS ONE IS THE BEST, ALRIGHT??
8. People will immediately judge you based on where you live in London. And you’ll start doing it too.
9. Dating in London is much, much harder than you thought it would be. I mean, there’s millions of people here, surely ONE of them wants to spend a couple of nights a week watching Netflix with me and take me out to brunch once in a while? No? Oh, OK cool.
10. Buses will terminate unexpectedly and at some point you’ll end up being dropped off in what feels like the middle of nowhere (but is probably just somewhere in South London LOL) and of course it will be raining and you’ll have left your brolly at home. FFS.
11. Your default mood will be tired but if anyone asks you how you are you’ll still be, like, ‘yeah fine how are you?’ #SoBritish
12. Going to the pub on a Monday night is totally acceptable. Urgh, you’ve had such a hard week already, best have a glass of wine to get over it.
13. In fact, going out on a weeknight is so much better than going out at the weekend. Saturday nights out are sooo 2008.
14. Your default walking speed will be fast and getting stuck behind someone strolling at a leisurely pace like they have all the time in the world will make your blood actually boil. GET OUT OF THE WAY I HAVE SOMEPLACE TO BE.
15. You’ll get used to going to sleep to the sound of sirens and drunk people shouting in the street. So much so that when you go visit your parents for the weekend you can’t get any shut-eye because it’s actually too damned quiet.
16. Your friends basically turn into your family and you’ll have no qualms about spending an hour on the tube to go have coffee with them.
17. That fantasy you had of being able to put a bit of your monthly salary into a savings account? Yeah, not gonna happen.
18. Your heels will gather dust in the corner of your room and probably just become a little playground for the mouse that comes to play in your flat at night.
19. You will go on holiday and when someone asks where you live you’ll feel a *little* bit smug when you say you live in London.
20. However long you live here, a train being delayed because of a person on the tracks will always make you feel a little bit sad, despite it probably making you late for something.
21. Your conversations will mostly revolve around how much rent you pay, where you live, who you live with, and which restaurant in Shoreditch does the best burger.
22. You’ll have all the best intentions when it comes to trying out that cool speakeasy bar or quirky pop-up restaurant you read about in Time Out but, 90% of the time, you’ll actually end up just going to the local pub.
23. You won’t actually buy anything at all the markets you go to but they sure do make good Instagram photos.
24. Sometimes the best way to appreciate London is to leave it for a weekend. City break in Amsterdam? Don’t mind if I do.
25. You’ll feel like you know the intimate life-details of the person who lives in the flat above you, despite the fact that you’ve never actually met. Errr, can you keep it down a bit, please?
26. You’ll get to the point when you don’t want to live in a flatshare anymore but also don’t wanna spend ALL your monthly pay cheque on your own place. Girl’s gotta eat, right?
27. City sunsets will give you a warm feeling in your belly and you’ll be all, like, awww London, you’re not so bad.
28. You’ll have such a strong love/hate relationship with it that sometimes you honestly don’t know whether you should pack your bag right now and leave or stay forever and ever.
29. Every now and then (usually after you’ve paid a visit to the pub) you’ll be walking home and the light will be just right and you’ll suddenly fall for London all over again and you’ll realise that, whatever happens, you did it. You moved to London and survived. And it feels pretty damned good.

That list twinged a few heart strings
I’m pretty sure hipsters actually don’t exist, at least how we imagine them, they’re just people with a keen sense of how ‘cool’ or ‘credible’ things are, particularly how much cooler they are than you. They will instantly judge how ‘cool’ almost anything is. Enough complaints. Every time I consider stopping this for good I see this face. FYI, it’s workawayer Katie looking like she’s losing patience.

5 Aug 2015

Post 403: Starting this again? STOP COMPLAINING

This blog is supposed to be a thankyou to all the people who have helped me over the years, it is not supposed to be a platform to rant, go on about things, bore, depress or alienate anyone but I will not sway from having opinions, I may have done a degree in politics and mentioned it once or twice and mentioned politics before, but let’s face it, it bores or worse, divides people, and our lives are hard enough! I used to like Russell Brand as a comedian but I can’t stand him now, his narcicissm, shameless self publicity and his high-horse naive self righteousness (amongst others)

I am writing another post because the latest workawayer Katie (who was an absolute treasure), I know I’ve said it before but I must reiterate how brilliant the workaway’s have been. From Juan last summer (our first) to Ellie now. In a way, they have all been my favourites, because they live here and seem to like it New people are like Oxygen to my housemate Marc, my carer, Gary and to me. Otherwise we’d all go mad. Marc has a talent for finding the best people. Our holiday to Spain in November 2013 changed our lives when we met Mike and Rachel, who were workawaying at Trixie’s House, the amazing and unique Casa de la Finestra. Katie said that I needed to do something I was passionate and good at.
I know – is this it?
Being passionate about anything doesn’t really work these days and as far as I’m concerned – passion usually means taking things a bit seriously – suicide bombers/serial killers/ god-squaders come to mind and I’m none of those. I’m sure this is quite ironic, but complaining is apparently the thing that makes people fed up (with me), oh, and politics and sadly the way my disability has worked out – most things I say seem to be interpreted that way (as complaints). I used to be the kind of person to avoid complaining about anything – trying my best to try and find the funny, the good, the meritworthy, the stupid, dare I say the positive, but I don’t think I was nauseating – now, things are probably a little different. Ability meant playing off 2, skiing, going to the gym, eating right, ‘A’s in my exams, Oxford University, an unimaginably awesome girlfriend who I was devoted to, a decent job, my own flat and mortgage in London, financial independence, friends, energy and always making the effort to do things for people. Disability means not having the ability and energy to do anything compared to this except luckily, financial independence and friends who make what time they can, the thing that gets me down the most is knowing I don’t have a chance with girls I find attractive anymore. I never used to even contemplate paying for it. It wouldn’t have been fair, right or necessary. Apparently, this is nauseating self –pity, you’re damn right it is, and I hate it coming out. People need as few reasons as possible to dislike everything about me. It seems to be a human tradition to hate people with more than you – it is more nuanced than that – we hate people who appear to have been given what they’ve got – now I can say with a straight face, that I worked hard for everything, even now, and anyone who feels I’m getting what I deserve (and I know they’re out there) can FUCK OFF!
What I have noticed about a lot of stroke survivors is a burning desire to get their stories out there, and I guess I’m no different. I guess stroke survivors find being ignored all the time the hardest thing, we always, ALWAYS, want to remind anyone that we were not as wretched once as we are now. Let me try and be clear. I am a do-er, have always been, not someone who can cope with just sitting around, but that is what I am forced to do. I exist because of the goodwill of my friends and family. Everything I do is about trying to please them. I know I have been luckier than most, to have a place to live and a pension from my old employer so I don’t rely on the state or on my parents – it feels like it’s the only thing I have. I try my hardest now to not lose touch with my old friends and meet new local ones but the type of people I know/encounter are all so busy. I take a lot of the responsibility because people want low maintenance friends and I’m not that. Even though I’ve been told I won’t be independent, I still do physiotherapy four times a week so I can maintain my transfers ( ie I can get to/from the loo and I can get myself to/from my bed) I have stopped snacking and eat one meal a day and have two protein smoothies. It is hideous. I spend most of my money on my friends and family. Gifts, going for meals and going to concerts. That feels pretty full-time, but apparently it is entertaining myself. I need to do something hard, something thankless apparently, so I say ‘just getting up in the morning is hard enough’ STOP COMPLAINING. I’m f*cked aren’t I?
Life is for other people, so that’s what I try and do.
Writing this is hard enough – I’m trying to squeeze as much of this writing out before I have my enforced ‘fatigue management’, basically an afternoon liedown so I’m not too f*cked for the evening. It means being out of touch with the world for two+ hours because sitting in my wheelchair is f*cking exhausting. What, ‘no need to swear’ BOLLOCKS, swearing was invented for precisely this eventuality. Now I have to post this and that will take hours. STOP COMPLAINING.



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