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3 Jul 2011

Post 296: Replacing a cliché with a tautology: a sort of change in strategy

Apologies if there are (more than average) errors or omissions in this, a badly timed computer crash (are there well timed ones?) conspired to make things a barely averted Disaster! I finally hit the publish button through exhausted eyes well after midnight on Sunday 3rd. Now it's the 4th July, and the fist order of business is it's my stateside Sister Susan's birthday, she's looking good for whatever age she is Sometimes I wonder if it's worthwhile. Comments (good or bad are always welcome) and help me maintain the illusio that someone reads this effluent
It's been no secret I've been a bit fed up – groping around in the dark for the next move and a move I could actually be sure about, not having a clue what to do but always trying to keep the interests of those who put up with me at the top of the list. Recently I have done a lot of thinking about a particularly boring cliché that gets spouted at a lot of Stroke Survivors and even used by one or two, it is the particularly nauseating 'No pain, no gain', which is used by sado-masochists up and down the country.The other thing was that stroke survivors only ever have this attitude if they recover. It's very much if in this situationUp until recently I would just nod my head in cowed bland acceptance when people said it, perhaps thinking that saying this to someone with Chronic fatigue is as annoying as a woodpecker mistaking your neck for a tree, in that category is this little gem that if I'd had a quid for each time I'd heard it I'd be a rich man. Prepare to be annoyed 'Concentrate on what you can do, not what you can't' F*ck that, stroke is all about you being prevented from doing things that you used to be able to do (usually easily). It stops you feeling (and being) normal – the best people I know are the ones who treat me as if nothing's different but the minute I look like I'm struggling and need help they instantly realise what allowances to make. It's such a talent, well I think it's basic common sense actually but it can be acquired, it can also be absent or ignored and called 'tough love', this is b*llocks when life is already tough. I'll be honest, nothing feels like it's got any easier despite exhaustive therapy and one or two ill thought out initiatives because nothing gets any easier if your fatigue never changes. When quality of life is the #1 plan, those bloody awful clichés get replaced by the simple tautology, 'no pain, no pain'. I already have enough pain thanks and so I do everything I can in the circumstances to make life bearable. I've tried everything else and guess what cliché spouters? I can't do it and I won't. This is not giving up - this is accepting reality and deliverance from torture.
This week my keeping sane has involved being taken out and taking people out. After my exhausting 3 days on the trot in Hyde Park with perhaps a slight lack of forethought, rather than plan to rest I'd booked tickets for a 'Great Classics' concert at the Albert Hall. I had been concerned that I'd sleep through most of it but luckily the third piece was the third time I'd seen the awe-inspiring Carmina Burana by Carl Orff. Think old spice advert or more recently the music they use to fabricate tension on the x-factor. I have a t-shirt that captures my feelings on this because of course like Americans with bumper stickers my most profound (profane?) thoughts are on t-shirts.
Back to the concert, my parents loved it and we got a bit of a thrill when the Pianist came and sat in our section (who'd just brilliantly played Griegs very recognisable Piano Concerto. I didn't recognise the opening piece by Smetana but I've now got to the stage where I can appreciate those sort of things and scratch my chin quite convincingly. Speaking of which, I went back to Hyde Park (last night – it's Friday today) to see Arcade Fire – a Canadian Band who's latest album won a Brit, Olly (who took me) had highly recommended them saying their sound was 'expansive'. To me this means good and the weather forecast looked pretty good too and Hyde Park is a glorious place, we had a great evening although the Lead Singer looks to have gone to similar overzealous barber as Brandon Flowers (see last post), so good in fact that we're going back for the Chemical Brothers there on Saturday -I've seen them a couple of times but Ol saw them at Glastonbury last week. It was a pretty busy and convoluted Saturday (It's now Sunday) and if I'm honest by the time I was on my way
to Hyde Park (5ish) I wasn't sure I'd have enough left in the tank. From a fatigue perspective it was tough but I'm damned if I'm going to let it defeat me doing the activities that I find worthwhile and I CAN do. There you go cliché spouters are you slightly placated? I can do this but not in the way I'd like too. That barely counts as a can!
Anyway, the thing that had tired me out is the something I can do which is the most important thing to me in the post-stroke world, and that is keeping up with my mates.
The Dennings and the Walmsleys had arranged lunch for me at the Walmsleys house in St Margarets nr Richmond. The only trouble was from the step at their front door to the narrowness of their hall, my wheelchair was never going to fit so we'd deliberately set this up to get me out of my (dis)comfort zone to see if with Nick and PJ's help I could walk through the house (thankfully they're both big lads) although Nick has gone from me calling him 'fat boy' to him looking great in the last few years. His wife Sally must be chuffed, her Pelvis has got better prospects! They are now (including Vicky and PJ all part of the 'self-confessed' professional suburban South London 30s Middle Classes who recognise the irony of having wooden Salad Bowls. They have 2 kids apiece (Oscar and Chloe for Nick and Sal and Gemima and Amelia for Vicky and PJ, Michael McIntyre would have a field day) – seeing as they are my very best friends who make so much effort for me, it's the least I can do to let them know how grateful I am. As it was with PJ in front and the Walm holding onto me behind I managed the walk from the front of Nick and Sals house to the lunch table out the back where I was greeted by Sal's delicious lasagne and three boisterous kids enjoying the British Summer. Having sat me down in a chair with arms, I was able to do my best at being a normal human although keeping ones head up is devilishly hard
, the only sligt hiccup was we had neglected to think through a strategy if I needed the loo, so the lads helped me slowly walk to the ground floor toilet where it is pretty demeaning but necessary that I had my trousers removed before occupying the throne. Not exactly a problem you want age 34. Anyway mission accomplished, Nick gave me a quick lift down to Epsom to wish good friend Jim farewell at a farewell BBQ at his folks house before he heads off to Australia for several years. I was a bit disparaging about his beard, probably because I couldn't grow one if I tried. After eating some rather delicious BBQ food, Ol and I headed off for Hyde Park getting there in time to catch most of Chase and Status, two electronic music producers who smash out Drum and Bass and Dubstep alongside a few other choice morsels, I've never really got dubstep till yesterday but have to report that on a massive soundsystem to a massive crowd, it is amazing, just watching the crowd leaping into the air as one – it's an awesome sight. The Chemical Brothers are two techno producers whose music just makes crowds just go mental, the generation above us just don't get saying that it just sounds like some sort of electrical fault. It can sometimes But they are masters at building up the intensity and then dropping back into a huge beat.
I also can't believe the expense that goes on facilities for the disabled at Hyde Park -I can imagine a management insultant looking at the numbers with incredulity, half the revenue per head and all this cost – extra staff, a dedicated platform, special portaloos (they still stink unfortunately), special parking – I'm glad it's legally protected because to me this is realistically the only benefit I get to being disabled. Disability living allowance is barely worth much, although my dad (quite rightly resents filling in a 60+ page form to qualify for it. I am lucky to have a father who does this. There must be people out there who don't stand a chance!
One of the many good reasons for going back to Hyde Park was to see the lovely girl who I could have sworn blind sounded like she was from Leeds but was actually from Manchester – the lovely Charisse, I'm a sucker for a pretty face, especially someone who seemed so genuinely pleased to see me everyday. She is lovely, I am also grateful to all the Showsec staff who were kind and chatty everyday I was there.
That might have seemed a natural place to end but no – Final thanks go to my friend Rachel who is moving to St Albans . She's a good friend – our red wine drinking evenings have been such a rare highlight. Anyone who fancies their chances filling Dr Oz's shoes?
Finally, on Monday -the Tonbridge guys took me out to dinner, this was when they first took me to dinner . Dave sadly couldn't make it but it was seriously good of the other three to make time for me particularly as Jim's wife is expecting twins.

2 comments:

TransformingTim said...

Wow! Thanks for sharing all of your Stroke and other stories. I've created a resource for stroke information, feel free to stop by or add a suggestion. What is a Stroke

Dom P said...

I thing I've done it

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