Sunday, 31 August 2014

Still rocking

This week saw the return to the touring stage of one of my favourite artists, or should I say artistes, after an inconsequentially short gap of thirty-five years. Unable to afford (with any genuine justification) the several hundreds of pounds that would have been necessary for me to purchase a ticket to the event, never mind the MS-related agonies that attending might actually bring, I was left to read up on all of the rave reviews that Kate Bush received and to dive into her back catalogue.

It occurred to me that my son is now twenty seven - some eight and a half years older than me when I saw Ms Bush when she last took to the touring stage. Now that's what I call a shocking statistic...

I was discussing music with a number of colleagues at work and it occurred to us all (some more than others) that at fifty-three I'm something of a dinosaur compared to the rest of them, although I'm happy to report my levels of disdain for some modern performers is no higher than theirs. Apparently One Direction and Justin Bieber are not at all popular with everyone under the age of twenty-five. More surprisingly, many of the musical heroes of my youth - you know, when the year started with a one - are almost as popular today with the younger generations. My teenage adoration of the Electric Light Orchestra, for example, was well received and understood, and my attendance at their Out of the Blue live show at Wembley Arena back in 1978 was positively envied. Now if they could only find me tickets to Jeft Lynne's return to the stage with the group at the Hyde Park concert in a fortnight...

Seriously though, it emphasises something about the ageing and debilitating processes that is well worth remembering - true quality will rock on across the generations. In the weirdest of ways, such brilliance as is demonstrated by musicians such as Kate Bush and Jeff Lynne, in their very different styles, is something that we can aspire to when we are not born with such divine talents.

We get older, we learn - or at least we should, to excuse Nigel Farage - and even though we start out a country mile, talent-wise, behind such natural talents as these rock stars for example, we can still begin to learn how they operated (and still operate, I'm glad to say). It might, in extreme cases, even lead to people in their sixth decade finally being able to demonstrate or understand at least a fraction of the natural talent displayed by the likes of Kate and Jeff. (And yes, I feel as if I can use their first names on the grounds that I paid good money to go and see them perform live four decades ago).

Of course there are those brilliantly talented individuals who are no longer with us and while I get some relatively blank looks when I mention my adoration of the voice of Roy Orbison who died in 1988, when I say I saw Queen in concert several times in the seventies and eighties even the youngest discussion member displays the sort of levels of jealousy that I find, probably rather naughtily, rewarding. When I mention that Freddie Mercury died less than three years after the Big O - and that this was twenty-three years ago in November - the look of surprise on many faces is rather shocking.

In any case, the music of those still with us and those who left us shocked and lonely about a quarter of a century ago, serves as a reminder that true quality never dies.

It's a lesson for all of us, no matter who we are, how old we are, or even when when a debilitating condition is affecting us. We might never have been born with the sheer brilliance of people like Kate Bush, Jeff Lynne, Roy Orbison or Freddie Mercury - to name just four of the myriad rockers who entertained and entertain us so wonderfully - but we can and should still strive to learn just how they become such iconic figures, and in time we should achieve at least an understanding, even if we never create anything ourselves.

It's not Only the Lonely who have the Wow factor to produce brilliant tracks Out of the Blue which continue to make us Want to Break Free.

Sunday, 24 August 2014

Miss You...

There are days - probably too many days - when I spend time just thinking about things that I miss, post MS, that I used to be able to do so easily. There are also those oh-so frustrating, annoying moments when I suddenly realise that I won't be able to do certain things any more.

One of the latter types of 'miss you' moments occurred to me just yesterday when I tuned in to the live coverage of practice for the Belgian Grand Prix. I'm pretty sure you don't need to be a formula one petrol-head to appreciate the moment (though that might help), but the Grand Prix in question used to be one of my favourites to visit each year.

The race is held at the Spa Francorchamps circuit, high in the Belgian hills; a location that is green and wild, and altogether charming.

But please note one of those words - hills.

Like all events, my MS is nothing more than a nuisance when I get to a position where I can witness them without having to move around any further - but that's where hills come in to the equation. To actually get to a circuit like Spa is a matter of getting on the right transport - not too much of an issue unless I have to stand around and wait for long periods - but once there you need to walk a long way to viewing points. And that 'long way', already a painful experience for me these days, is exacerbated no end when hills become a part of the equation. Spa, I am sad to say, is beyond me now.

The same applies to any event that I would have to stand through, so memories of rock concerts are just that these days - memories. I love music and live music especially, and I have fond memories of standing for hours and hours watching all sorts of groups - although the time I saw the Rolling Stones playing 'Miss You' seems rather ironic these days...

Football in the UK wouldn't be too bad if I could get to the all-seater stadiums that are the only types allowed these days, but it's the getting there that's the pain now - in more than one sense of the word. Trains can get you quite close but then there's the fun and games of the final walk.

And it's not just me and my wobbles. There are plenty of wheelchair-bound and walking frame-dependent would-be spectators, but for all the ramps and 'easy-access' areas, the actual getting there is so very difficult and the time needed to get anywhere has grown to crippling (no pun intended) proportions.

The sudden realisation that viewing something you used to love so much is now impossible, is by far the worst thing, though.

I've just watched the Belgian Grand Prix itself from the relative comfort of a chair in my front room which I reached without the need to limp and wobble my way up or down a single hill (the stairs weren't easy, but I can live with all thirteen of them). It might be true that I saw all of the race incidents in glorious Sky TV detail - and I won't comment on the stupidity of a certain driver - but I didn't get to hear the cars' engines or their tyres squealing or the crowd roaring, cheering and jeering. I never got to smell the petrol burning, the tyre rubber overheating or, come to that, the aroma of the crowd...

The experience was still fun for a confirmed formula one petrol-head like me, but it was lessened. And that 'Miss You' feeling will last longer than the event itself in my mind.

I seem to have a growing collection of Miss You moments these days so I guess it's a good job that I have a whole set of new and sedentary goals. Now all I need to do is stop coming up with other ideas about things I could do to entertain myself - which further thought points out that I can't actually do any more...

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.

Sunday, 10 August 2014

Write On

It's great to be back behind the keyboard after my brief but highly necessary sojourn to a surprisingly pleasant London hospital (forgive the words 'surprisingly pleasant' but I remember the NHS of the Blair years...).

Since my return I have been focusing on two things - getting back to work right now and starting to prepare for the new experiences that MS will bring in the future. I managed a whole week in the office so the first aim was met well enough and I was also pleasantly surprised that my second aim took a few (admittedly wobbly) steps forward. Let me explain...

As regular readers (poor but very welcome souls) will have seen by now, my main aim in an MS dominated future is to turn my attentions to an activity that has genuinely been a love of mine since I was wobbling around the house for reasons of age rather than a medical condition. Put simply, I love to write and have done since my toddling days.

I'm pretty convinced I will never be the next J.K.Rowling (I'm always confusing Harry Potter and Del Boy Trotter), nor the next Stephen King (horror in my stories tends to be entirely accidental), but I know that with practice I will improve from an okay starting point.

Ultimately it's a matter of how others perceive your efforts, of course, and a few weeks ago a little light-bulb flickered into life above my head (there's plenty of room there these days - I now have few enough hairs that I'm able to give them each a name). It wasn't exactly a brand-new idea, but it was mine - an idea that I have kicked around on and off for a few years. Back since kicking was a genuine option for me, that is. It's real birth was way back in the last century (good grief, that sounds ancient) when I amused myself and a few other watering-hole regulars with the creation of stories from single sentence concepts. Someone would come up with a sentence/idea and I would, the next evening, deliver a short story based on said sentence. An example that springs to mind is 'A revolver that fires seven bullets instead of six' which became a rather gruesome story about a witch with an old tea-room (One for the Pot).

Well, back in those pre-twenty-first century days, one or two people suggested that I might like to feature them in short stories, and the idea festered away. Sure, these days I would love to be short-listed for the next Man Booker prize, but the idea of writing a short story for someone, featuring that person in the fictional context has never really gone away.

So, anyway, a few weeks ago this idea formed (or rather, re-formed) in my follically-challenged head and I offered a couple of people the chance to 'star' in a short story. I even allowed them the choice of genre. As a first venture into this territory I was kind enough (i.e. stupid enough) to offer the service both free and with an agreement that the finished work would be theirs and theirs alone.

And there you have it. Last week I finished two original short stories for which I received the grand sum of zero pence/cents and which I cannot show anyone by way of reference to my abilities... Perhaps the surgeon who worked on my face killed off more than a trigeminal nerve...

Oh well, in the very (very) broadest sense of the word I guess I am now a true professional author, and I really will persevere with my 'bespoke short story' work - but next time, there will be a slightly fairer agreement all round!

Sunday, 3 August 2014

New Experiences

As if the diagnosis - and reality - of MS is not bad enough, there are plenty of little extras that come with it. As all too many of us know, MS can trigger such joys as Trigeminal Neuralgia, a source of pain that would make many a former fascist dictator green with envy.

It is this very condition that has seen me sidelined for the past couple of weeks and, more relevantly to me, has seen me hospitalised this past week. Such fun...

I was the dubious recipient of a whole new experience and more precisely, the recipient of a six-inch needle through the cheek muscle in search of the trigeminal nerve entry point.

Said nerve is now fried and the only pain remaining is the somewhat natural bruising that the procedure brought with it.

The whole experience - new, I might remind you - was a somewhat surreal event, but it did provide a surprisingly welcome opportunity to do something that I don't seem to have had time for during recent months.

No... I mean time to think.

It occurred to me, for instance, that for all the patching up, bone-setting and occasional stitch in the past, that I had never actually been admitted to hospital for an operation before. Not bad for someone who, I admit, is closer to fifty than forty (fifty-three IS closer to fifty than forty, okay?). And given that the MS has been kicking around for a few years now, that's not too bad either.

The hospital food wasn't Michelin-starred but there again, I've had worse meals prepared for me by friends. The staff all seemed to know what they were doing - and did it with apparent happiness - and the other patients were the thoroughly expected eclectic mix. This wasn't an experience I wish to repeat in a hurry, but there again, it could have been a whole heap worse (and not just the procedure itself).

Time to think has left me feeling much more in need of more time to think. It's all true that we should push onward and use that effort as a means to cope with our condition, but we really should take time to simply think about things. The net effect of MS is quite the opposite of a positive one, but there again it does offer opportunities that we can and should grasp - opportunities that were not apparent to us before the condition took its grip on us.

Perhaps I'm still loosely in the grasp of post-agony relief, but I swear I understand the whole MS thing in far more detail than I ever did before.

I don't mean that there are a wealth of hidden silver linings that I had not seen before, but the new experience of time to think has added a new level of honesty to my understanding of what I am - and we are - going through with MS. And it sounds almost obscenely twee, but I have now been able to see the limitations of what I am going to be able to achieve - if I apply myself -  in an MS future.

And those can be very big things - in terms of what I always really did want to achieve in my lifetime.

I have a hundred stories I might like to write - and maybe twenty I really will.

I was never going to be a professional cricketer - I was simply never good enough - and I was never going to be the next Jimi Hendrix - I was simply never good enough. And I could add a dozen or more 'I was never...' items, all followed by 'I was simply never good enough'. But I will be able to write, MS or no MS.

I'm not good enough yet. Not good enough by my own standards. But that's something else that the new experience of time to think has brought me this past week. I won't waste too much time trying to be too perfectly good - because I have stories to tell. And if the odd word is wrong or a phrase lacks the perfection I would ideally like to see... well, so what? I'm me, and no condition like MS or neuralgia, is going to change that fundamental truth.

One day in a year or two I will need that nerve frying again and I'll be ready for it. I won't pretend I'm not already dreading the actuality of the procedure, but I'll say loud and clear I will take that opportunity to revisit this new experience of time to think. And by then I will have shared the first one or two of my stories with you all.

Who knows what else might be different?

'Once upon a thyme...'