24 Dec 2011

Post 322: The bad dream before Christmas

When adults are happy for the same reason Children get happy, that's when Alarm bells start ringing and I think there need to be more men in white coats around not because I like the idea of living in some Orwellian nightmare but I have laboured the point enough that living in reality, as grim as it sometimes is, is where we have to be. We take every opportunity we can to escape reality, some take holidays, some drink, some people become smackheads. Now I can't go on holidays, being a smackhead requires two hands, my drinking is luckily confined to the occasional sociable glass of red wine, – which leaves me stuck in reality which is why I am at best, lukewarm on Christmas. Perhaps lukewarm is a bit disingenuous, perhaps saying I f*cking hate it is closer. I hate saying I hate things, I'm not one of 'those' people,
although believe it or not I have sometimes been accused of being a 'bit negative' (perish the thought) since it happened (my stroke or my f*cking stroke to give it it's full title) reasons to be cheerful haven't exactly been in abundance but have nonetheless existed in the last week although I am slightly concerned that the last post was a bit depressing, or as I like to say, realistic. Having a plan has always been quite vital to feeling like I'm getting somewhere. Trouble is having a plan necessitates being able to pay for it. I talked in the last post about an electrical stimulation thingamy
to help exercise my left arm as I am getting fed up with my left arm not pulling it's weight (so to speak). I went to lunch on Sunday with my new friend Isa
and her mischief of a 12 year old son Kevin. We went to the Nando's in Walton. What a treat for me. I love Nando's.
For Isa and Kevin it's a bit like having an interactive two year old along for the meal, I hope more of a 15st wheelchair bound Stewie Griffin
(less evil,obviously) rather than a 34 year old who behaves like a boring two year old and good old Isa has said that me talking about that machine in the last post has given her something to aim for when she runs her triathlon for the trust later this year. Pardon Me but how f*cking brilliant of her! She doesn't think I'm a lost cause! Please Sponser her. The other strand of my plan go's something like this -after 3 odd years of killing myself doing assisted walking practice I never felt like I was getting any better at it -I certainly never felt like I was getting any more independent or feeling any better (in fact it made me feel worse, much worse) so I'm not doing walking practice like that anymore, but in a similar way as with my arm, I can't face never walking again so my idea is to install some parallel bars
in the newly vacant garage
at the end of my garden. It's at the idea stage now but it's the best one I have! I figure the alternative (of never walking again) is just too terrifying to contemplate at my age, as for the fatigue, I just am going to continue feeling like sh*t everyday and hope gradually feeling better beats me working out how to get to Switzerland. I apologize that this isn't the most upbeat thing to say but the reality of my situation sometimes spills over into this. Since my stroke I have always had a special place in my heart for the friends and family who have stuck with me, seeing this happen to me must have been awful, but I have an even more special place in my heart for the new friends I have made, people who have got to know me through the hearsay of others or through photos and stuff I have written on here or other websites. I really feel that these people are angels and have given me a chance, people like Isabel (who I talked about earlier) –Sacha,
who granted me an audience last week for tea ( put like that because she is understandably the busiest person in the world) (hilarious people like her often are) - Jo and Suzanne
(who had a horrible long journey from and to deepest Essex) to take me to see the Manic Street Preachers at the Dome last week. They both must have battled extreme tiredness to make that Journey, but it was so worth it when I got this message from Jo 'Thanks again for last night, it was the best gig I've been to for a very long time.' and to see how talented James Dean Bradfield actually is: He is a funny little Welshman who looks more like a supply teacher than a genius.
He plays lead guitar unbelievably
(while singing as well as Lang Lang
plays Piano, speaking of which don't you think LL sounds like he should be a Panda!) It's comments like Jo's that make expending the time and effort (oh yeah, and the money) for everything (not just sorting out these events) worth it. I'm sure there are those reading this who think that just giving up going to gigs would solve any money worries I have and may help my tiredness a bit, trust me, it's a calculation I have done in my head and despite often dreading how tired it'll make me it give's me some sort of life – but more importantly a connection to what must be my life-force (which I reckon is everybodys life-force) – spending time with people who you care about (and vice versa). Why do you think facebook has got so massive? It is also People like Graham, who took me to the Hammersmith Apollo on Tuesday
for a charity gig for homelessness Charity Crisis that make life ok. When you book to go to a gig like this you book it because of the artists and the message of the charity often hits home at or after the event, ok it didn't for the Friends of the Earth thing a few weeks ago because I'm not much of an Environmentalist (i.e the planet is beyond repair and every vain effort we make is dwarfed by China's productivity 'miracle'- the planet is trying to kick us off anyway – it's like whispering in a hurricane, but being homeless, hungry and cold are among my biggest fears so what Crisis stands for and does does move me a bit, well quite a lot actually and saying this from my warm house makes me feel pretty fortunate. Charity aside I think it worked out rather well. Ross Noble
as compere showed he's a funny guy when he doesn't have the opportunity to be so weird that he ends up being sh*te, Jo Brand
was funny, Graham Coxon was sh*te, Tim Minchin was genius
as always and Paul Weller absolutely smashed it,. I saw him in Hyde Park back in June and he was nothing like as good then (I suppose it's the difference between warming up and headlining) but the key thing was Graham saying (who I think grew up with Weller and 'the Jam' and the 70s mods) 'It was worth it for just that one song', F*ck knows which song but the Apollo was really humming by the end. Anyway, here's the point – Graham is a new friend, someone who enjoys our evenings out and can be relied upon – a diamond geezer if you're a cockney and realizing I'm not thinking he's a good egg is more appropriate, the real find of the last few years has been the amazing Mel
though, owner of one of the loveliest smiles I've ever seen,
a top bird who drives, lives nearby, loves gigs and even though I am absurdly down on myself at times she has the rare ability to look past it and see the good in me which is a great gift. She even took me to Nando's after we watched the new Sherlock Holmes movie on Wedensday. Nandos is difficult to fault despite it being a bit hard to eat comfortably in the Epsom branch and Holmes has morphed into an action Hero, I always saw him as more Poirot than Arnie. You win some, you lose some with Movies. Getting out of the house with Mel was the winner. Her sense of humour is well explained by the fact she gave me this,
to remind me that whingeing will quite rightly be met by people playing small violins as a response to 'woe is me' nonsense. She gave me another present, appealing to my love of T-Shirts with slogans.
I think she's found my level. Speaking of which, I got an amazing on spec visit from the entire Denning family (PJ and Gemima,
Vicky and Milly)
yesterday – Vicky is one of my best mates from college, sort of like the sister my age I never had, despite thinking 'she looks tidy' on day one at college there has never been even so much as a 'frisson' between us, probably why we're such good mates now – when we were housemates in London we used to drink cans of Stella and smoke fags with our feet on the coffee table like something out of 'Men behaving badly', the bizarre story about how I knew her husband, PJ, before her is here Even though I try not to do this here's a rather cute picture of my favourite (of my 3 cats) Ham,
taken yesterday. Now to survive Christmas! I'll doubtless have something to say about it but have a good Christmas everyone!

17 Dec 2011

Post 322: I have a dream: Hope it doesn't snow!

I worry that people reading this might think that life for me is a never-ending stream of friends, gigs, training sessions and no real work. Well, let me re-assure you I've never had to work so hard in my whole life, and it's not work for any financial reward. Everyday is a fight to actually feel like I'm doing something with my f*cking life. I refuse to be like one of the cast of Shameless
or like Charlie Buckets Grandparents in Willy Wonka
and sit around watching daytime TV or lying in bed. I tried to get myself better until it became clear I wasn't getting any better. Instead I've been throwing the resources at my disposal (which I acknowledge are more than most) into maintaining what pathetic physical independence I have (which without maintenance would waste away in a few short weeks). No-one tells me I'm doing the wrong thing, although plenty of people seem to find the time to imply that I don't deserve what I have i.e to be alive which infuriates me. I'm probably over-reacting because that's what exhausted people do. I also hate sounding all 'woe is me' whiney because that's not me, Speaking of which, my friend Simon said to me on Wednesday 'I can hear your old voice through your blog' THIS IS THE EXACT REASON I WRITE IT – As much as I can speak now – it is not the voice anyone who actually knows me recognises. Even though speech therapists told me over five years ago that 'your voice will come back just from talking' -well, I have done more talking than most, most of it 100 times harder than talking ought to be, and has my voice returned to how it was? Has it f*ck, on a similar principle, too many occupational and physio-therapists told me that my left arm/hand would recover feeling/movement if I used it – this has been an area where I've been a bit stubborn – I have actively avoided using my left hand because it doesn't work properly and it doesn't have any feeling. Paradoxically, it does move with huge amounts of tiring concentration as long as I can see it, so it feels like I'm putting in loads of effort and getting nothing out of it, and why? Based on the same sort of 'expertise' as the speech therapists who told me my voice would come back. As far as I'm concerned I seem to have saved myself a lot of exhaustion and anguish by deciding my arm is 'not fit for purpose', when I've been forced to use it and some have brainlessly said 'you have no use in it, because you haven't used it' - er can you prove that?, it is hideously slow and I have no idea where it is most of the time unless it's in direct sight, I often think I'd be better off amputating it. So what has prompted this angry discourse? Because I'm not sure people understand how broken I am. I'm exhausted but far from ending it all, I'm always on the lookout for things that might help and on one of my many web trawls I turned up an electrical stimulation machine which is designed to help people with paralysed limbs exercise their f*cked limb. As usual I had my sceptics hat on. I think I just did the calculation in my head that I'm not going to live with a useless left arm for the rest of my life, I have to try something, so I got in touch with the company that sells it to check they're not snake oil salesman – I then emailed a neurophysio to see what he thought and unsurprisingly he cited there being little evidence to support getting it, that's because in this game there is little evidence to support anything, but the overriding thing that has permeated my psyche is there's very little evidence for improvement this long after a stroke period, any opportunity is in the months after a stroke blah blah etc. I am now almost six years post, so everything I do is a guess, and to make matters worse, this machine, this thing
is an eye-watering £2700. I think there are a few hire plans, where hiring it for a year is approx £1500, so me being me, having evidence is of course nice and rather than writing it off, I need to have some sort of plan so naturally I got them to come and demonstrate it and I was a bit blown away by the test -after putting a few electrodes on my arm and turning on the machine, my left wrist cocked involuntarily. I also need to be sure that this won't be another expensive bit of equipment just sitting in the corner gathering dust. But I have two physical therapists who between them I see 5 times a week so they could hook me up to it, this could help, BUT, and there's always a but, the trust is too low on funds to commit to that sort of expenditure, I would try and contribute but given how rubbish I am at balancing my books anyway I can hardly be relied on. Anyway, food for thought. It's hard to end a blog post not on a cliché. Ending on a cliché or pointing one out is practically one. A guilt-trip however..... It's not all bad though, my neighbours (Ian and Tracey) offered to come round with a delicious Thai takeaway and drink mulled wine last night and the marvelous Mel came and joined us – it was a lovely evening – the food was great, the mulled wine was delicious and possibly quite strong and the company stellar. If I were to plan something these days, it wouldn't be much different from that, even if the mulled wine made my slurred speech even slurrier. It's so much better than being surrounded by strangers in some sh*tty overpriced London bar!
The other thing I managed to do this week was go to the Dome with Simon and Mel
to see probably my favourite band of the last decade, Kasabian. Before it Simon had even written on facebook how much he was looking forward to it, prompting me to respond: I've seen Kasabian live twice and they are pretty hard to better, now in my favourite seats,at my favourite venue - Should be awesome To be fair, I think awesome is the correct description but I had one or two thoughts: I've never really been a massive fan of the whole 'Laddy Indie Rock' thing.i.e I once went to an Oasis concert and hated the whole testosterone and alcohol fuelled aggressive atmosphere of the place, like I imagine a football match to be, a part of British Culture we should all be ashamed of, even if alcohol has been removed from that particular equation – admittedly, I dislike Oasis on the principle that I can't stand the Gallaghers, I think Noel might have some talent but Liam is the type of animal that makes me wish Australia was still a penal colony. The last time I saw Kasabian was in August 2010 and reading that makes me think a few things, that deep down if you're a genuine enthusiast (and not a wheelchair using one) the Brixton Academy is just unbeatable for sound and atmosphere but for spectacle and bone crunching loudness and sound clarity the Dome wins every time, seeing as I am a wheelchair user and a fan of spectacle and loudness it's not rocket surgery I love the Dome but deep down we all know I'll go to any old sh*t if it means I get to treat and see my friends and get out of the house... My 2nd observation is that Serge
is the real talent behind Kasabian and the longer Tom
stays on the Greggs diet rather than on 'Gillian McKeiths Skoje Berry and no cocaine'[NMTB] diet, the more they'll realise that Tom is not Mick Jagger and never will be.

14 Dec 2011

Post 321: Trust Drinks 2011

A big part of this blog since I worked out how to do it has been putting up pictures, and arguably the most important event that makes me feel useful, the Trust Christmas Drinks took place last week. The reason this post is a bit late is I've been waiting for the photos from my lovely mate Becky Litchfield
[no, not related to Patrick Litchfield, the photographer]she's just got the right name considering she is a rather talented professional photographer. The only reason I can remotely afford her is she gives me 'mates rates' and why, you may ask do I need a photographer? Well: 1.I'm a vain b*stard 2.I take sh*t photos and so does my poor mum+we're too busy talking 3.It eliminates so much stress+we're busy trying to remember what we're saying which is harder than you might expect 4.Becky's photos are so much better
(as you can see) 6.that's it 7.Do I really need to explain myself? So this post is likely to be a bit photo-heavy, surely a good thing, given my pre-disposition for rambling. My first point I want to make was how humbled and thrilled I was by the turnout.
I often moan about how forgotten I feel, and this event helps me feel a bit less so, I only understate it because this is one night in the year and convalescence is a lonely 365 day a year business. My first specific thanks go to my carers who all came along (who I couldn't survive without), from the left Bianca (who has just moved in to replace Abeer), Agnieska, her husband Hassan and Abeer
– Finding people that I trust has been hard, but I feel that I'm there now. They are practically my new family (almost) Nothing can however replace my actual family who's involvement since my stroke has kept me going and stopped what is left of my brain eating me whole. They maybe old-fashioned and a little eccentric, and perhaps take what the Daily Mail says a bit literally but they are good people, there's Mum,
(who was actually a bit unwell, which is why he looks a bit red-faced, well pissed and my brother Chris
(we sometimes don't see eye to eye but know that we're brothers, without him I'd be in deep trouble – so would our family, he often forgets how much people value his talent, he's a rare breed, a builder you can trust! I always bang on about how this occasion brings a weird, mixed bag of people together. The biggest group are probably my university mates like Richard Rous,
(who has just revealed his wife is expecting), Guy and Tristan,
great university mates who have both been involved with the Trust, little Sara who is not becoming of that title anymore, beautiful young lady Sara
is probably closer, my best mate Tony,
who barely has the time to tie his own shoe-laces letalone take care of his lovely girlfriend Kate.
I am so grateful for the support he gives me through running the trust, here seen running the raffle and my favourite student president Helen.
Another heroic Helen, who's help I couldn't live without is the eponymous HVJ,pictured here with her kid sister
– see the likeness? Speaking of which, one of the star prizes in the raffle was a bottle of Champagne autographed by the ever popular leader of our land David Cameron. A spontaneous protest by my more left wing friends was I'm sure narrowly avoided, this touchpaper prize was generously donated by my good friend and former housemate Matt,
the now Tory MP for a safe seat in Suffolk (I still find this hard to believe) – If anyone needs an understanding of the current financial mess, he's your go to guy, he's even written a book about it.
The 2nd group of people are those who I know since my time as a little-known DJ(an understatement – I hardly did any weddings or Bat-Mitzvahs ), it's great to see some of this lot -Adam,
(who's always looked out for me and is in fact taking me to see Kasabian tonight) Daegal
(who was flying out for his wedding in New Zealand the next day, really good of him to come, Fi and Kat
(Queen and princess of mischief back in the day) and Gaelle
(Still a princess). The 3rd lot are going to be my former colleagues and people I met through work, First up are Champ and El,
now married to different people but a bit of a power couple back in 2000, the people I worked with at John Lewis were also in evidence
(LtoRSimon, Dave, Ed and Justine) and on that note I run dry of photos of my old colleagues but also need to thank some other very good friends who made the effort to be there, old family friends John and Caroline Jackson,
and Caroline's daughter Clare,
who believe it or not I used to throw snowballs at 25 years ago because her skiing was 'slow and girly', I'm not laughing now. It was also cool of my old schoolfriend Owen to turn up, here talking to my cousin Danny,
who was actually a couple of years below us at school. There are more photos (I'll put them all on facebook) but as much as I'd love to talk about them all, I can imagine there are some pretty bored people. I think I've made the point in a pretty roundabout way as usual – thanks for coming, it makes me feel that living is worthwhile. As you've probably noticed I get down a little bit these days, it is an evening where the people who know the real me don't give me a chance to get depressed – which is what I need! I'm bound to have forgotten someone but the evening was the important bit – even if I am a bit 'bah, humbug'
about the whole thing - have a great Christmas everyone! Despite this - I can't stop myself looking half-asleep,



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