Hmm, a bit of a controversial post, so if you are of a nervous, and/or trolling disposition, click away now.
I’ve been thinking about a whole range of people I’ve met over the last few years; people who’ve had strokes in their 40’s, people who have faced tremendous adversity and of course, people with MS.
Taking MS for example, as I kind of know a bit more about that than other illnesses. I’m not talking about newly-diagnosed people – I was an absolute train wreck for over two years (and some would say I still am, but in moderation) – but people who have had time to adjust to MS and all it entails.
You know them – ‘Ah, no, couldn’t possibly do that, MS, you know?’ or ‘would love to, but can’t, MS’. Or even, ‘what do you know, my MS is sooooo much worse than yours’. I’m not talking about people who have a drastic decline in health. I’m talking about the majority of us who live with MS.
Of course, the image surrounding MS doesn’t help. When people – including medical professionals – recoil when you explain your diagnosis (MS being up there with the scariest of the scariest illnesses), it can be all too easy to slip into the role of wearing MS as a badge of suffering and an excuse for not partaking in ordinary life any more. Of course, of course, life has changed beyond all recognition. But. I have met people who have taken this mantle very early on and displayed it for all to see, to the detriment of everything else. In short, it becomes their raison d’etre: I can’t do it, I have MS.
I have experienced the flip-side to this myself, many times – I can be praised for how marvellous I am to take a Masters, considering. Or continue to work, considering. However, I also know that my job-seeking days are almost behind me. I can breeze through the first interview then come to a halt at the second. You have to come clean. CV in the bin. Yes, that’s my MS excuse, but I sought other avenues and bugged friends until one of them, my long-suffering, now-ex-best-friend took a chance on me.
When MS obliterates your life and smashes it to smithereens, nod politely at the people who look at you with doleful eyes, thanking the heavens it’s not them. Do something extraordinary. If people expect nothing from you, surprise them. You have a blank page, ready to write on it anything you want.
If you decide to take up that long-forgotten hobby, do it. If you want to launch your own micro-business from your kitchen table, start a bee-keeping course, learn to make candles, do it. Not only will you achieve something new, people will congratulate you. A win-win situation, and liberating?
For the record, I know a good few MS publications are full of people doing stuff waaaay beyond the ordinary. I will not, for the record, take up skydiving. The nearest I got was Nevada where I clung to the pilot as my friend threw himself out of a plane (which had no doors). And I won’t be trekking around Nepal any time soon. With my legs?
What I mean is, MS is a wonderful excuse, and it cuts both ways. It is an excuse to duck out of life and host an endless pity-party with like-minded individuals, OR it can be a gateway to an amazing new way to live.
Get me. Last time I saw my tutor for a portfolio one-to-one, we were talking about the possibility of progressing to a PhD. Lol. I mean, really? I have MS, don’tcha know?
I hear that!! I teach at a small college in the US in the middle of a city, with mixed demographics: some of the students work crazy-long hours and go to school, and others… still live with their parents.
When the first group tells me they were too tired to come to class, I can sympathize, because maybe their kids were also sick and kept them up all night. But the second group? I’m not “out at work” about my MS, so I don’t tell my students that I have an illness that slows me down (they’d never guess, at the rate I bounce around the classroom) but they also wouldn’t understand, since we’re in a society of “my situation is worse”.
Besides, when it comes to my (more naive) students… I initially think, “I’m tired, too… get some perspective” but I realize that when I was 18, I felt the exact same way due to lack of life experience.
And now that I live with RRMS… it’s my kick in the butt to do something amazing. 🙂
What a brilliant comment! I love that – ‘it’s my kick in the butt to do something amazing’.
It really is. In a bizarre way, MS has ‘liberated’ me from the norm. I know it sounds strange, but when people really do expect you to achieve nothing, as you have MS, all the more reason to choose something to do, just for you. Something you’ve always wanted to do.
On the other hand, I know just how hard it can be not to rely on MS, and end up doing nothing at all, churning out endless excuses. For example, and it’s only a small one. I’m normally too tired to go out and meet friends. Not knowing if you can get a chair in a pub or whether it’ll be too hot, or I’ll be too tired means I just ask people to come to my house instead. I can chill on the sofa and still catch up with people.
Same with the Masters. It’s a tough course, but I get a lot of support I never knew was available. Computer help, study support, software.
It’s a hard place to arrive at, but maybe we owe it to other newly-diagnosed peeps to show them that MS is not an ending, it’s a whole new beginning.
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Dr Stumbling don’tcha know.
It has a certain ring??
Will be taking a rain check on that one methinks. Tutor said you can do it in 3/4 years. Gulp. That’s a shed-load of intense work.
Tempted though…
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I’m not about to go climb Mount Everest, (too bloody cold), but I might jump out of a plane :p
if anything MS makes me do things, not sit at home, (well maybe today, my legs are like jelly at the moment :p), but I really don’t want to use MS as a reason not do to most things. hubby keeps saying I should go on to become a Doctor of Philosophy or a masters in research…yeah but what do you do with it when you have it? :p
True! Don’t think there’s many jobs in academia these days 🙁
I think if I were to do it (and it’s a massive IF), I’d just do it for the achievement…but a lot to do just for that!
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yeah it would be an achievement, a big one. and actually, might be one of the few jobs where having MS is a good thing :p especially research, you don’t need to move around a lot, just have people bring you books :p
Sounds like an ideal job for me!
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