BEFORE YOU START: Please note that although I currently volunteer for both the Stroke Association and Age UK, the views expressed in this blog are strictly my own. I am not a spokesperson for either (or, indeed, for any) organisation. I am based in the UK and the blog therefore has a UK bias - I've tried to use the Glossary to explain any terms which might be ambiguous, but if you think there is anything I've missed, please message me.

Thursday, 13 June 2019

Why do so few people get involved?

My wife and I were at something called a "Step Out" event in Salisbury last Saturday. The event is specifically designed as a sponsored walk for stroke survivors, even on a paved path so, if needs be, you can complete the course in your wheelchair. The course was, in total, three laps of a Salisbury park, making a mile in total. It was the distance which attracted me - I've never managed that far since the stroke, but I made it - albeit with one or two - or ten or twelve! - breaks along the way.

It probably took me about ¾hour to complete - that's just the speed I am these days. My wife somehow managed to keep up. Because my foot doesn't work, my lower leg acts like a kind-of pendulum. Anybody who remembers their high school physics will tell you that the period of a pendulum is dependent on its length and nothing else, so I'm kinda constrained by the length of my lower leg - things like faster and slower go out of the window.

Anyway, we got round, and that's how long it took. I was so knackered by the end of it I just went straight to the car, we drove home, and I hardly moved a muscle the rest of the day. That's how fatigue gets me. I thought back to the first time I rode my bike any kind of distance - a whopping 20 miles! - and I felt the same after that - just not enough energy even to move. A few years later and I was a bit fitter and did a hundred miler - furthest I ever rode - and felt the same afterwards. Legs like jelly for the following 24 hours.

Despite my personal triumph, I was a little disappointed that only two other people turned up. A guy and his son, probably looked about ten. They were able-bodied and ran the course. We spoke at the start, just to say Hi to each other, but of course they were finished long before I was so we didn't speak after. I'm not sure how able I'd have been, anyway. I think I'd seen this pair before, at another event (that time, we'd volunteered to help), but I've never heard of them apart from that. Presumably they too have some personal connection with stroke. So, this chap and his son, my wife and I, just the four of us.

It does make me wonder - every fortnight I do my drop-in. Every fortnight, the ward is full - 28 beds. That must be a throughput of hundreds, if not thousands, per year. And yet, none of them comes to an event like this.

I understand only too well that some people must be left more disabled than I am - it's not uncommon to be housebound after a stroke - but equally, there must be people as-good-as-if-not-better than me? I mean, I had a full-blown stroke, I'm left without the use of my foot and my hand, I can't, seriously, be in better nick than anyone else who had a stroke?

It's funny, but at our coffee sessions at the Playhouse, I used to think and say the same. Why were there only ever four or five of us attended? When, as I say, thousands must've passed through that ward over the years. I mean, with the Playhouse, it was sometimes so sparsely-attended that I sat there on my own (I wasn't really prepared to do that, so in the end I stopped going too). It would've been different if people tried us and thought we were idiots, and I think one or two did, but it was only one or two. 

I think that part of the problem with that group was just circumstances - nobody really came along after me. Maybe the prospect of me scared everyone off??? But it was a group of survivors who'd had their strokes some time ago, decades in some cases, and who were all getting their lives back on track. Unsurprisingly, our get-togethers just competed with "life". For me it was a bit different - I was definitely still recovering and had time on my hands, I'd probably be more begrudging of the time now.

I don't know. I can't pretend I'm not disappointed that stroke survivors don't get more involved, but there's only really so much I can do personally. With the coffee group, I'd have liked for it to have done well, but didn't really feel that it was my responsibility. I did, of course, help where I could. I wrote a web site and got leaflets printed up and distributed on the ward, for example, just because I could. It is funny - I felt that as soon as I was able, I had to reach out and find other people in the same boat, but obviously other survivors don't feel the same way.

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