Sunday 17 August 2014

When you know...

It's been a bit of an unreal week in a couple of ways. It started out with me beginning to gain some useful insight into the whole 'MS and how others see us' thing, and then graduated into a more sombre appraisal of some of the most negative symptoms and conditions. Let me explain...

At the start of the week, I was told that 'it's alright for you, because you get so much sympathy...'. I had been complaining about something that has become awkward for me - that oh-so complex of tasks, carrying a heavy bag - and the other person returned the complaint with the observation that they had a fractured finger and a fractured bone in the foot so they were 'more than aware of how much pain' I suffer, but the difference was as I stated above - 'it's alright for you, because you get so much sympathy'.

That sort of fatuous comment has been made to me before so I knew it was a pointless exercise in pointing out that my pains could hit anywhere at any time, included trigeminal neuralgia which a nurse assured me was twenty times worse than childbirth, and, perhaps most importantly, are extremely likely to assail me for the rest of my life - even with medication.

But of course, sympathy makes all the difference, doesn't it? Especially in the rare instances where it's genuine.

Comments like the one I received though do serve a useful purpose - they let you know whether someone has any degree of understanding of the MS condition or not. Or maybe, to be fair, they provide you with an insight into that person's own levels of honesty and acceptance of your condition. Or even, just how overwhelmed they are by the extent of the condition...

In any case, it's comments such as this one that let you really know (okay, more or less know) just how others understand what MS is all about.

And that brings me to the darker side of the week.

As many of us are all too aware, there are many aspects of MS that can depress. It might be the gradual loss of sensation which stops us being able to walk properly. It might be the sudden spasmodic pains that wake us from light sleep or have us crying out in public. It might be the falls as balance deserts us without warning. It might be... any of a hundred symptoms that can afflict us inside our little bubble of MS.

Whichever symptom it is that is assailing us at any given time - or even whichever one it is that we are fearing will assail us next - the net result is all too often a feeling of depression. We all try to look on the bright side of life, some with greater success than others, but the black dog I have spoken of here before is always ready to sink its teeth into the unprepared butt.

And one thing is very, very important to remember - depression is a condition in its own right, an extremely severe one. Just ask Robin Williams' family. Just ask Andrew Colgan's family as well.

I was a teenager when Robin Williams descended to earth and reported his findings back to Orson on a weekly basis, and I loved his manic performances as only a teenager could. I was never a 'number one fan' type (nothing remotely as scary), but I have enjoyed his comic and straight performances over the years far more often than I have disliked them. It saddened me so much to hear of his suicide.

But that's what depression can do.

And Andrew Colgan? Well, he was one of the focuses of Terry Pratchett's attention in his award winning documentary in 2011, Choosing to Die. It followed, to Dignitas and an assisted death, two gentleman who had simply had enough, Andrew Colgan being one of them. Mr Colgan suffered from Multiple Sclerosis.

That's what depression can do.

It's true that we get some sympathy for our plight as MS sufferers, just as it's true that sympathy comes between sycophant and syphilis in the dictionary (i.e. it's of no real help). It's just as true that we will suffer bouts of depression of one sort or another as the reality of our condition makes itself, often painfully, felt.

What we really, really must try to do is create a new future and pour our attentions into that whenever we can. As I've said before, I'm not likely to ever win a major literary prize, but I can - and will - write some stories and publish them. Perhaps the sadness surrounding the death of Robin Williams - and the equally self-determined death of Andrew Colgan - can serve as a reminder to each of us that, depression or not, we can still contribute something very much worthwhile.

Nanu,nanu from me? No, I'm not signing off yet. RIP Messrs Williams and Colgan - we should always remember you.

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