Month: April 2019

They had an interview on breakfast TV this morning on the theme of stroke. Of course, my ears pricked up.

They had a survivor on. In some ways, a very good example of a survivor, because she’d had her stroke at just 22. A lot younger than many people think is possible. Actually, even a baby could have a stroke, although it is also true that the probability increases with age.

They did at least mention that stroke was the biggest cause of disability in the UK, although I thought they could have made it a little more obvious by interviewing a disabled stroke survivor. Maybe a pretty young woman is considered better tv than somebody who’s chair-bound (especially over breakfast!)? Nothing against this woman – I’m sure she’s struggling to get her life back, however the stroke’s left her. But tv producers think in terms of viewers.

The (first part of the) fatal mistake, in my opinion, was when the interviewer asked, quite innocently, something along the lines: “I suppose it took you a long time to recover?” This was completed when the survivor didn’t correct him. Past tense, just like a cold, or a bout of chickenpox. I think probably all survivors – all the survivors I’ve met, at least –  would describe themselves as “recovering” at best. Present tense. I know a guy who had his stroke in the nineties and who still feels the effects. It never goes away – I think the biggest “win”, if you could have such a thing, is to get to the point where other people don’t notice the effects. I’m met several people like this too, I’ve probably seen many more without even realising, and I’m in awe. But it’ll always be obvious to the survivor that they had a stroke.

I will readily admit to feeling very alone at the start of the stroke, something which made me reach out and find other people. I’ve written about that in the past, it was certainly one of the reasons for volunteering. I’ve kind-of come full-circle now – I feel alone again because although I know there are people out there, those who speak out never quite hit the mark. I’ve seen how the benefits system leaves people with benefits at such a level as to be meaningless – make no mistake, if you have a stroke, the system just casts you off, to sink or swim on your own. I’ve seen how the medical system abandons people for the simple want of transport to get to an appointment.

You eally want to show what it’s like? Get a survivor on, ask them to write their name. Ask them to butter a piece of bread, to cut up a steak. Ask ’em to type something without making stupid bloody typos.

I hate it when people consider themselves infallible, because none of us is.

I remember a while ago, I’d been volunteering up at the local hospital for a year or so. There’s a specific aspect of strokes (I’ll try not to say which because I’d prefer this post to be anonymous), and a training course had been organised aimed at members of staff. “There’s a few spare places. Why don’t you come along?” I thought that it might well be useful to learn more about the subject, so accepted.

The first half of the course was to be the theory. The second half, a group of people who’d been afflicted with this aspect of stroke had been invited in to be guinea pigs, so we could test our new-found knowledge.

On the appointed day, I arrived nice and early, and introduced myself to a somebody who happened to be lurking around the reception area, who I think I later found out was one of the doctors. “Hi, I’m a volunteer from the Stroke Association, I’m here to do the training”. “Oh, there is training today but you’re an hour too early.” That’s funny. I note stuff in my diary as soon as I find out about it, but maybe I’d made a mistake? So I thanked then and actually went to the coffee shop for the next hour.

When I went back, an hour later, it transpired that I’d missed the first half of the course. This woman had heard the words “course” and “volunteer”, had isolated them together and not bothered to listen to the rest of the sentence. She had assumed that, rather than being a course attendee, I was one of the people who’d been recruited to test the attendees in the second half of the course,

To say I was pissed off is an understatement. If this woman had been diligent, she could have checked, but no, she was sure that I was wrong. I could have been more assertive, I suppose, but I did realise that I might have indeed have got the time wrong.

It’s funny because I’ve since recognised this trait several times in doctors – I must be right because I’m infallible. With the benefit of hindsight (i.e. I now know that I was correct) I should’ve just gone home, or not have bothered making the journey in the first place. I have at least learned from experience  – if anybody from there asks me about future training, my response is always a quick “no, thanks”.