The Unwelcome Visitor: Chapter 19
The truth .........Christ it hurts!!
(Indulge me for a few seconds, I have just had it confirmed in black and white, that after all these years I have R.R.M.S......... who knew? Not me! At least I now know the type I have got, I think I had an idea all along but when I saw it written down, don't know how I felt, sad, relieved, angry, bemused! I am glad I now know, I wanted to know, I needed to know all sorts of emotions were colliding in my head but at the end of the day, I just wish I did not 'have' to know of course! There you have it, onwards and upwards, lets spit this devil in the eye people!)
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' What do you do, that still makes you feel good about yourself, despite having M.S? '
Talking of course, is it not obvious!!!'
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Talking of course, is it not obvious!!!'
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We always go on about what we are unable to do anymore, what we wish we 'could' do but can't, that sort of thing, so lets just think about it for a while! There are the obvious 'physical' things that some of us can't do anymore, or at least we can't do as they 'should' be done, so what, who cares!! Obviously 'we' do but in the grand scheme of things, does it really matter, if you can see, hear and speak and shake a fist in the air, you have, in my book, still got the ability to have an opinion, be able to exercise that right (no pun intended) to show it, still have 'attitude'!!
We still have to have a need, a desire to be heard, that is why I am now a firm believer in coming out of the woodwork and joining your local Centres, gobbing off in cyber space is good but nothing beats a face to face discussion, talking heads and all that! The really cool thing about talking is you can find out so much about this thing, not just the usual stuff, the diets, the exercise, all of that 'medical' stuff!! Don't get me wrong, all of those things are very important of course but 'talking' is so important too, Christ, our brains tend to get 'fogged up' enough, so getting involved in discussions, debates, rows even, using your voice, being heard, you will never be satisfied with your 'lot' in life if you don't, so believe me 'talk' is good and it keeps the cogs moving too!!
I must be honest, I still tend to do far more 'listening' when it comes to discussions about M.S, I may have been diagnosed for nearly fourteen years but as I have said many times in previous blogs, I have chosen, that is until recently, to remain on the 'periphery' when it comes to talking about M.S! People who I talk to or meet with on a regular basis , all know that they can ask me anything they like, I don't mind at all and I am certainly beginning to notice a kind of 'trust' because let's face it, we are but 'kindred spirits' are we not? The great thing is, a lot of the people I come into contact with are just as mouthy as me, it's so great to know that there are people just as 'aggressive' towards this thing as I am, which is great and I 'personally' have yet to meet any M.S'r that is quiet or a 'quiet moaner' for that matter, well actually, I have ,but hey, nobody is perfect!!
At the end of the day, talking about it is good, it helps, it works and once you start, well........................
With every 'like', with every 'love', there has to be the opposite, a hate, a loathe , a detest, the law of averages tells us that, Christ we are only human after all! There is nothing wrong with feeling the opposite now is there but do you think that being seen as a bit 'gobby', or a person who disagrees or disputes something, do you feel like you are seen as being awkward or even confrontational! Nobody, especially at my work, has given me cause to think that they have a 'don't wind Martin up, he's that guy with M.S' way of thinking!! Nobody has and I hope nobody ever will, Christ, I am big enough and ugly enough to look after myself and I would never even 'dream' of hiding behind this bastard thing for protection!! That's a bit of a poser don't you think, ok, so I am one of the fortunate ones who can still get around quite well, I work, I drive, I am a pretty lucky son of a bitch(but if you ask me and my guard is down for a split second, i'll tell you otherwise!!)
M.S, why you lowdown........... Son Of A Bitch!!
All I am trying to say is having M.S does not mean you can't stand your ground, state your case, don't be brushed aside, just because you feel physically weakened, just because you have to rely on help in some way, you still have a VOICE!! So when somebody looks at you, lowers their voice to a 'whisper' and says, 'ah, you poor thing, that must be so terrible for you'!, LOCK 'N' LOAD my friends, LOCK 'N' LOAD!!
During the working week, I have to deal with all sorts of people, the good the bad and apart from the ugly ones, some real pains in the ass!! I often mutter under my breath, 'Forgive Them Lord, for they know Not What They Say (or do for that matter!)' and as I have often said, this 'thing' makes you very judgmental of others, can't help it, it just does! I don't know about you but I often and I mean 'often' get people say to me 'you are looking well' and 'what did you say that 'thing' is called again?' When you tell them, you can always tell the ones who are genuinely interested from the ones who are just killing time, doesn't bother me too much anymore and I will tell them if they 'really' want to know but let's not waste each others time please! I can always tell the ones who want to go 'further' and have a conversation about it but those who are not that interested, within about five minutes, they will go off on another tangent completely! I cannot and will not blame them, they just assume that you are really not that much different from them, do as they do, be as 'one' with them if you like and why not but I 'aint!! I am a different person to the one I was and unfortunately, the person that I once was, is miles away from the person that they 'may' think, that I still am!
(God bless Ronnie Lane, another victim of this 'bastard' thing!)
I don't know about you but the hardest thing for me to admit to, to acknowledge, just to live with, is the fact that I, like all of us MS'rs, have a 'CHRONIC' condition! Let's get that in the open straight off, a 'CHRONIC' condition, such a horrible term but that's what it is! Obviously, this means that it 'aint going to go away any time soon, well never actually and trying to get that through to others is a pretty tough job! 'How can it be chronic when you look so well' or 'yeah right', are two of the usual responses you get. I don't think that they are meant with any malice, or at least I hope not but this in itself, get's me thinking! Am I the victim of my own 'success', do I make more of an effort to 'look' ok and to come 'across' as ok, especially at work, now there is a conundrum!! I don't mean that I lie or kid people and there are times when I do feel pretty crappy and some things are a bit of an effort but a lot of the time I work on my own so my condition or my 'appearance' is not so 'high profile'. I can work at a level that suits me and I manage to do my work without too much of a problem, so the company is happy but am 'I' !!
I am, fundamentally a happy guy but I 'wish', I 'want' and indeed, I 'need' to be happier but even after all these years, I feel that there is something still missing! I know that it is not a 'thing', nothing I can 'touch' or nothing I can 'see' but it is the state of mind that I lack, being 'really' happy, more to the point, allowing myself to be happy! It is, without a shadow of doubt a missing link of some sort, the bit that is missing !
It is because of my relationship with M.S because of my abject 'hatred' of this thing, my almost total 'refusal' to accept it, my refusal to let it be a part of my life, is this what is holding me back, preventing me from getting on with my life, could be, maybe, I don't know!! It is like me saying to M.S, 'I know you are there but you 'aint fucking coming in', which I admit is the totally wrong way to be, some would even say it's futile! Ok, so I have this 'CHRONIC' condition, this incurable disease and until I fully open the door and let it in, am I destined to be only 'partly' happy with my life!
Christ this is getting a bit sad this week but I am not, cannot and will not let this bastard thing dictate the way my life is going to go, so I will keep searching for that elusive 'happy' gene, it's in there somewhere and I realize that it is me who is preventing it from making an appearence !
I run a lottery syndicate at work and we were talking about it the other day. All the usual's, what would you do if you won a multi -million pound payout and when it came to my turn, the answer I gave was not the one they were expecting because no amount of money could 'EVER' get me what I want, I want the 'old' me back, a pristine condition 'Martin', a Mk.1 model,!
Was he a better person than the one you see before you now? Well, let me just say this, he was a great bloke, he was a lovely guy and my friends, he did not have M.S to alter his perception of so many things that we take for granted and perhaps, he took for granted! So until that day when I can set the coordinates to sometime, anytime before June 2000, until that can happen, I shall just wait around for a while and what is it they always say, 'all good things come to those who wait' or the one that I like, 'every good boy deserves favour', well, I'm a good person and I can wait!!
Until that day, I shall just keep wishing that I will soon become as happy as this pig!
Until next time, bombs away dream babies! xx
