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20 Jan 2013
Post 379: So where do we set our limits?
As it’s January and there is literally nothing happening at all, I have had some time to prognosticate which is always a worry! My first thought has been: How long do you try something before you decide ‘this isn’t f*cking working, time to stop OR to try something else’. Now throughout my life I’ve always been in the ‘keep trying’ camp – you can when you’re confident, able and energetic. What has caused me to have this thought and blog it was working out that the one hand keyboard
I’ve got is really not for me. I’ve given it a couple of goes and it’s not for someone with my deficiencies that relies on the computer for almost all of his interactions with the world. Things change when you’ve had a stroke, you have to be able to listen to your body above the melee of idiots (yup, I’m comfortable calling them that, I could call them much worse things) who using goodness knows what for energy say ‘never give up, keep plugging away at it’ my evidence for saying ‘that is bullshit’ was telling my physios and other therapists (supposedly the experts) at the Frank Cooksey Rehab Unit in early 2006 ‘I want to be as if nothing has physically happened to me’ and they nodded their heads. Here I am 7 years down the line and the chance of me ever being as if this never happened is zero, absolute zip. I am stuck in a wheelchair forever. Well, however drawn out forever is.
When I left Putney Hospital in April 2008 and the Physio told me I’d never walk again I deliberately didn’t listen and adopted the ‘I’ll show them’ approach (the pigheaded one) which has sometimes been effective in the past. I explored all manner of options to try and overcome being stuck in a wheelchair, crikey , my major achievement was losing over 17 kilos (~2.5 Stone) in two years after I got out of hospital by strictly changing my diet (basically giving up all sweet things including not eating between meals) and adhering to a physio regime that had me so depressed that I would genuinely fear my physio sessions. Oh no, I’m moaning again – if anyone wants to tell me off, try having a stroke first! (and one like mine)
The sort-of solution has been a little tricky to explain and unremarkable but it’s quite reasonable – it has been to be realistic with myself leading to this honest appraisal. I am no nearer to walking independently now than I was using the Frank Cooksey’s ceiling tracking hoist
7 years ago so walking independently again isn’t realistic, I just use my treadmill for general fitness – walking holding on like that keeps my legs strong for my transfers and I hope helps keep my weight in check. What finally made my mind up to dispense with Walking therapy was spending hundreds of pounds of my own money on trying to get my then therapist registered as a neuro-rehab trainer. It didn’t result in anything. It was here I realised that the only people who seem to make a decent recovery from a stroke are stroke survivors who don’t suffer from omnipotent, all encompassing fatigue and recover their ability to walk pretty quickly, ie – it comes back to them within the first year - because that part of the brain hasn’t been completely destroyed. I’ve heard that stroke survivors get tired but that it comes and go’s, mine never goes, I have never met one single other stroke survivor who has fatigue like this. In short, I have been honest with myself and cut my losses: Annoying; painful and wasteful it may have been, This is not ‘giving up’ - at least I did try and was able to do it because of the Dom Pardey Trust –- which subsidised a lot of my efforts to try and recover because that is what recovery from this kind of thing is - guesswork. I think I can honestly say I’d be in a much worse state if it wasn’t for the trust and the general support from elsewhere(friends, family and John Lewis) It has literally been trying whatever is out there if you can afford it, trying to pick a lock with a marshmallow (if you’ll pardon the euphemistic meaning), the state basically washes it’s hands of you as soon as you leave hospital, if I’d relied on community therapy, I would barely have had one physio session a month – instead I have three a week.
No-one has any definitive answers. They can claim they are Neuro-this and Neuro-that and sure it means that they have read a bit more, studied a bit harder, know a few long words and charge a lot more but ultimately their objective, actual factual knowledge about fixing my kind of brain damage is zero, it’s as simple as saying, the brain at this stage of the 21st Century is too complicated for ANYONE to understand or do ANYTHING about PERIOD. Until there is such a thing as a working DNA supercomputer or a supercomputer that isn’t used for espionage our understanding of the brains micro-circuitry will not be detailed enough to understand any of the detail of an injury like mine(and the devil is in the detail)/letalone even start to know how to fix it.
At least I can say with a degree of complete honesty I have given it a
go and I had a much better chance than most because of support from
family and friends and an amazing former employer and yes, I have been
lucky to have had a middle-class background and upbringing and a family who have pretty much supported me unconditionally despite me objectively being an ‘utter failure as a human’ – I know there are plenty of people out there who aren’t supportive and would be happier if I suffered more. Why? What is wrong with you? I honestly don’t think I have wronged anyone since my stroke (or before it even, the worst I might have done is upset someone verbally - genuinely – short of being a little bit flippantly rude on here, I think I’ve only been like that if people deserve it. I am pretty sure that I’ve stuck to my guns, haven’t been disingenuous, inconsistent or tried to be someone I’m not. I have told it as it is and never knowingly misrepresented anyone and never strayed from pretty solid and reasonable core beliefs, I think this is why so many people have stuck by me. I’m always going to discuss sh*t and ‘find the funny’* in life. PERIOD *nicked from Stephen K Amos
The last seven years have been a bastard and I’m pretty sure I have put as much as I could into this and I haven’t been a c*nt about it but boy, could I have been. I’m pretty sure that isn’t who I am.
I do apologise if this has been heavy going and you find yourself looking up and sarcastically saying REALLY or as my current comedy hero Kevin Bridges would say in his distinctive Glaswegian accent ‘did ye, aye’
Speaking of which, thanks to Michael
for taking me to see Jimmy Carr in Guildford on Sunday.
I’ve been to see Carr a few times – now, here is a man who has made it to the top by being a see you next Tuesday. Apologies if the language has upset anyone, I don’t think I can even blame Jimmy Carr, who despite his tax arrangements wasn’t even the worst Jimmy in the news last year!
Also thanks to Gordon, a chap I was in hospital with in 2006 for his phonecalls and generally for bothering to stay in touch, and also big thanks to those who suffered giving this the ‘once over’ this week – you know who you are!
Everyone else, as it appears to be snowing we better declare a state of emergency and await the inevitable chaos and Gnashing of teeth. I was quite looking forward to my annual trip to see the Cirque de Soleil circus freaks at the Albert Hall but I guess that’s out of the question, and Jose has already had to cancel today’s (friday's)torture: Any mature adult who thinks the snow’s a good thing, then thinks about it logically and still thinks it’s a good thing is an Oxygen thief! Well, I wrote most of that on Friday and yes, my mum, the original planned driver, couldn’t make it here from the middle of nowhere to take me to Cirque but instead Gary (my carer) stepped up so it meant him and Gwen could go.
It was the usual cirque fodder.
Probably the sort of thing that people who like ‘Britains got Talent’ would think was the best thing ever! The Cirque Performers are a bunch of sinewy freaks, able to do feats of co-ordination, balance, strength and dare-devilry miles beyond the limits of my unable-to-balance-on-two-feet-brain. At least this time we were relatively close so I could just about work out what was going on,
here’s how I described it in January 2009 it was contemporary dance with elements of rhythmical gymnastics and acrobatics set to an epic musical score with Chinese and Arabian influences but never stepping away from the kind of Parisian street theatre and performance art you'd find around Montparnasse. I think I’ll leave it at that. It was sad Mum couldn’t go because she loves shit like this but great that I could take Gary and Gwen.
There isn’t really a moral to this story except my catch-all philosophy ‘don’t be a dick’!
Lastly, one political word. I’m fed up with middle-class champagne socialists who spend their lives disingenuously trying to be right-on whilst trying to make middle-class people who have always paid their taxes feel guilty for what they’ve got.
Sorry for the non-sequitur, it’s purely the timing!