As normal over the festive period, I’ve spent a fair bit of time catching up with old friend, some of whom I don’t see very often at all. It’s nice to catch up, of course, and the chance to have a drink and a natter with some lovely people is undoubtedly one of the highlights of Christmas for me. For some reason, this year I have become really conscious of how people enquire about my health. It’s only natural, of course, that the people I’m closest to should be concerned enough about me to ask how I’m getting on. What I’ve become aware of this year is the number of different ways that people go about this.
I think I’m pretty open about my multiple sclerosis: it’s not a secret in any aspect of my life and I’m more than happy to talk about it to anyone who is interested enough to ask. It’s a chronic illness that is well known but also widely misunderstood: most people have heard of it, but few people really know what it means. In the main, people tend to hear the words “multiple sclerosis” and assume the worst. It’s a death sentence; you’re going to end up in a wheelchair…..all of that sort of stuff.
In a way, all of us who are unfortunate enough to suffer from something like this have an ambassadorial role for other sufferers. Whether we like it or not, perhaps the biggest way that people’s preconceptions of the condition will be challenged will be in how they see the way it affects someone they know. It’s a damn sight more difficult for someone to hold the view that people with MS are doomed to be in a wheelchair when they know that I’m the most active person they know and I go running all the time. Yeah, maybe I will end up in a wheelchair one day…. But that day hasn’t come yet, and until it does, I’ll be out flogging myself in all weather conditions. Does that help to inform people about what MS is like? I hope that perhaps it does.
Like it or not, though, MS is a progressive illness and, whilst I might be fine running now, it’s entirely possible that one day I will be forced to stop. It’s also a largely invisible illness, so it might not be immediately apparent if things have changed. When my friends are enquiring about my health, they’re putting out concerned feelers to try to understand if I’m still okay. It’s a hard question to ask because no one wants to ask it and then find themselves on the receiving end of a tale of misery, especially not from a friend.
Why am I more conscious of the question this year? Because more people have been asking me the question directly… it turns out that they normally just ask my wife and I had no idea. I actually find it touching that people care so much about me. Many don’t quite know how to approach the subject (which is probably why they usually ask C), but the love and concern behind the enquiry is humbling. I spent a week before Christmas staying with some friends in Oxford, and I found out on the way home with my wife that they had both told her that I looked really well. Apparently, although I superficially look unaffected on a night out or over a weekend, when you live with me for a week, you start to pick up all sorts of other signs of how MS has affected me: they way that I stumble and start to trip when I’m tired, the sudden fatigue…. This year, my friends reported to my wife, I seemed much better.
When C. told me this, I didn’t know what to say. I had no idea that my friends were watching me this closely and were so concerned. I was also, it must be said, mostly unaware that I display my symptoms like this. I’ve had symptoms of MS for nine and a half years now; there’s nothing that can really be done about it and it is what it is. I know better than anyone how I feel, and I try to just get on with things. I don’t live in a world of denial, precisely, but I need to have a state of mind where I refuse to let any of these symptoms get on top of me and I need to ignore them as much as I can. To hear other people being more observant of my day-to-day condition than I am for myself was something of a shock, and it really brings home to me how much my illness affects the people around me; the people I care about the most. Especially, of course, my wife.
Some of my friends are somewhat less observant and informed. One keeps asking my wife – but not me – if there is anything that he can do, because how does she think he will feel if I die in a few year’s time and he could have done something to help? Apart from the ignorance about how MS works, the lack of sensitivity in asking my wife – in this scenario remember, my widow – how she thinks HE would feel after my death is quite staggering. Still, I suppose at least you can say that there is still an underlying concern in the enquiry: in his own clumsy, insensitive way, he’s showing that he cares.
“Oh, is there not a cure?” said a friend’s partner, before shrugging and turning back to her drink. How quickly you can move from concern to indifference in a crowd.
That’s life, and if you can’t laugh at that then you might as well give up now.
the locus of control
4 hours ago