I’m done talking for the day, but I dug out a video you may like. This is Chris Hadfield, on the International Space Station.
Way back in the nineties, I found an excellent US comedian called Emo Phillips. He was quite prominent back them, although I don’t hear much of him now. I can’t blame him for getting tired of criss-crossing the Atlantic.
One clip of Emo is funny, but I think also has a serious message.
The serious message here is that no matter how in common we are with somebody else, sooner or later, we’re different. How deep you want to look is up to you – whether you’re looking for similarity or separateness, you’ll find what you’re after.
I don’t know, I pro-actively searched for people after the stroke, looking for other stroke survivors, for I spent a long time thinking that I was on my own. Sound familiar?
After I reached out, I gradually started to meet other survivors in person, however, and we were all differenet.
One guy had his stroke back in the early Nineties – you wouldn’t know. But he still wears a FES device to help him along. I tried one of those for a while. Another guy looked okay, but had had a couple of strokes, with a heart attack thrown in for good measure. His disability was quite minimal, but he was conscious of his voice. I think my voice has changed, but my tech still understands me when I speak. Another guy – it was his peripheral vision, someone else was the opposite of me – gets by with her hand, but can’t walk.
So, all different, but all the same.
At the moment, I celebrate particularly when I get something from my old life back. Last week, just a walk in the forest. We went to a town, to a café, for the first time since the stroke. Any of that sound familiar?
At the same time, I’m scared that there are parts of me that I won’t get back. I’m still not driving, or doing paid work, for example. It’s been almost four years, now. Sound familiar? But I’m fortunate because the brain I used to use to make my living, that did come back.
Lastly, people on here. People with all kinds of back-stories. I don’t know how some of them came through what they’ve come through. Coming through, I bet everybody would put it in the present. Maybe they think that about me? I’ll let you into a secret – I’m nothing special. I got put into this shitty situation, which I didn’t ask for, and I’m just doing my best to put my life back together. Sound familiar?
Disabled is a funny old word. What exactly is disabled? Nuts and bolts? What’s the difference between disabled, and a bad arm, bad leg, depression, etc? Well, one measure is whether you’re in receipt of the relevant benefit, and the UK’s main disability benefit is called PIP, Personal Independence Payment. It’s a form of Newspeak. They cut people’s bus services, then tell them they’re independent. Go figure! But I must not get bogged down. In theory, parliament sets the rules, and they are implemented by the benefits agency, the DWP (Department of Work & Pensions).
At least, that’s the theory. When the DWP makes a decision, people often appeal that decision because they feel it is wrong. Almost 3/4 of these appeals are successful. As far as I can tell, if the DWP were implementing the rules properly, then that figure would be in the region of 0. Okay, it’s never going to be that low. Every case is a judgement call, so you’re bound to get some of them wrong.
And, believe it of not, I do support their aim. With any benefits system, disability, immigration, whatever, you’ve got to have some sort of test. A high jump, where if you jump over the crossbar, you qualify for the benefit, and if you don’t, it’s I’m sorry… Political parties will disagree exactly how high that crossbar should be, but they all agree that thee should be one. Otherwise you’re either giving the benefit to everyone or to no-one.
I was debating with somebody once about whereabouts that crossbar should be. Quite reasonably, she suggested that expert medical opinion should play a part. Quite often, they ignore medical opinion and…did I mention how many people appeal and win through?
But there’s the rub. I have only had one appointment with a doctor in almost four years since the stroke. Even that one appointment, three months after discharge, the main purpose was to tell me that I was on my own, that no further help was available. Further? I was left wondering what help I’d been given in the first place! It left me thinking that if I were a consultant, earning magebucks per year, it might really harm my job satisfaction to have a dozen years of healing experience under my belf, and to be stuck with telling people all the time that I couldn‘t, or rather, did not have the resources to, help them. If it weren’t for the fact that I was earning megabucks.
Of course, I have had contact with the NHS over that time. I take meds every day so need to restock those regularly, for starters. And I’m quite happy to get blood tests – I’ve learned myself what the results mean. And, bear in mind that my wife is a diabetic nurse. But as for visits to the local surgery, I try to keep those to a minimum. For one, I was on meds prescribed by these guys when I had the stroke, so how preventative was that? Okay, be reasonable, it might well have happened anyway. True, it might, but isn’t it suspicious that every one of my meds was changed while I was in hospital? Almost as though I was on the wrong meds to start with! Even since the stroke, I was told by a receptionist there that she wouldn’t help me to get some form printed off – at the time, getting to the surgery was just about my limit, so I was not best pleased that my journey had been fruitless. That particular episode resulted in a complaint, but I doubt I was taken seriously. So when wife asks me if I want to go to their Christmas party, it’s always a curt, No, thanks.
Taking medical advice on board is fine, but a lot of disabled people are cast off by the system, to sink or swim for themselves. They don’t see doctors for long periods – disabilities are generally long-term, so this could be years. And, they likely won’t have seen their hospital doctors since they were discharged.