As you might imagine, I've connected with the MS Trust on Facebook. It seemed a natural thing to do, given that they're an excellent charity and we fundraise for them. I was thinking that maybe I'd get some updates on the charity's latest work and other news about the various research and breakthroughs that are happening in the world of MS. I get all of that, but what I wasn't really ready for was the community.
Facebook is many things - not least of which is that it is an appalling time sucker - but one of the things that it is best at is bringing communities of people together. Whether it's a loose grouping of friends who are scattered around the country and around the world, or whether it's your local parkrun or whatever.... it provides a simple, accessible way to be in contact with lots of like-minded people. To give an example, I really enjoy being a member of the Virtual Runner UK group. Although formed mainly as a platform for people to discuss the Virtual Runs they've entered - something that I don't really do all that often and only started because it's a local company and have supported the charities of several of my friends, including my own - but it's grown into something much more than that. In the main, the people drawn to virtual runs are the kind of people who are just getting into running and want to earn medals but are intimidated by the idea of entering an actual race. What the community has grown into is a hugely supportive group of people who are encouraging other people as they take their first steps into a healthier lifestyle. I think it's brilliant.
In theory, the MS Trust community is something similar: a group of people who have a shared experience and are able to offer each other support and perhaps to share the benefit of their own experiences. I know from experience that being diagnosed with MS can be a long and frightening process, and it can be very reassuring to talk to other people who have been through the same thing and can tell you that life still goes on.
....except that the problem with this particular community is that, if you believe what you read posted here, it seems like life doesn't go on and that, if it does, it really isn't worth living. Here's a recent post: "I don't think I want a driverless car. Most of my body seems to be driverless and unresponsive now so the only time I can shift is with my right foot on the Go pedal in the car. I don't want to be deprived of that ability to control moving about as well". Is it me, or has she really had to reach for the negative there?
I've talked on here before about how there's an unfortunate tendency for blogs on MS to turn into pity parties. Whilst I understand that what people choose to write about isn't necessarily their whole experience and that it can be therapeutic to just let it all out as a form of primal scream therapy... frankly, I don't have much patience for it. What good does it do you to wallow? In the final analysis, what's important is what you have, not what you've lost, isn't it? None of us have any control over this illness and mourning a life you can no longer lead just seems to me like a massive waste of the time you have left. I don't mind people talking about their own experiences, but it drives me crazy when it all degenerates into a kind of "oh, poor me" or a "nobody knows the troubles I've seen" competition. Let's be clear: in that competition there are only losers.
I realise that I'm wide open to people dismissing my opinion on this as irrelevant: it's easy for me to have that attitude when I'm still able to run marathons, isn't it? ("There's always someone like you who can run marathons or climb mountains. I can't even get out of my front door", as someone once sneered at me). There's clearly an element of truth in that, but you have a choice, don't you? You can choose to be positive and to try and live your life with what you've got, or you can choose to be negative and to wallow in the injustice of what you've lost. When I read the "29 things that only people with MS will understand", I genuinely don't understand why everyone else is commenting things like "So true, so true", when all I can wonder is why these people are defining themselves with these labels. I like to think that, if things were ever to get worse for me, that I'd cut my cloth according to my circumstances and try to make the best of it.
Hopefully, I'll never have to find out.
...but the MS Trust group is awash with negativity. Even when people are asking relatively benign questions and posting links ("What do you think of this?" and so on), the comments are often miserable and small-minded. Someone actually posted the other day asking for people to try and be positive and to share something nice that had happened in their lives, and all he got in return was people telling him they couldn't because nothing nice had happened in their lives. Really? Oh come on. It then degenerated into people slagging off the people who did post nice things.
If you ever see me commenting "So true" underneath a meme like any of these, please find me and slap me. Even if any of these things are part of your experience, they're not true all of the time, are they? This last one? I fall over when I run, but I pick myself back up and I keep on running.
Isn't that how any of us should try and live our lives?
As the song says:
You've got to spread joy up to the maximum
Bring gloom, down to the minimum
Liable to walk upon the scene
can I get an amen?
meeting with my neurologist
1 day ago