An Unwelcome Visitor : Chapter 28

Some people, really make you think long and hard about yourself!!
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Light 'IS' at the end of the tunnel, how you see it and how you choose to deal with it is down to you, if you want things in your life to keep you where you are, that's up to you, if you don't, cut the rope and just go for it, however you do it, just do it, we only get one crack at this life, no re-runs, so no more excuses!
I did for too long but not any more!

M.D.L.October 2014

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        Hello my friends out there, since last we blogged, I reckon I have kicked them old blues into touch for a while, so lets just say, I am a lot less 'clouded' up there, I'm thinking a bit clearer and with more purpose than of late!  I still stand wholeheartedly about what I said about being a bit reckless once in a while, that 'aint gonna change, come on now, I have my own set of standards to maintain!  It's just that I have heard certain things and met certain people recently, who for a moment in time, have taken this miserable Bastard out of his body and made him sit opposite himself and have a real good look and 'discreetly', compare himself with others and more to the point, try and decide where do I go from here!

     

         Every Friday I make a visit to my Therapy Centre, the place that I avoided for so long, too long but now it is a place that I look forward to going each week, it's the place that I feel that I now belong, it took a while and it took a long time to lose the 'stranger in town' feeling, obviously this was purely in my own head of course! Anyway cutting to the chase, a few weeks ago my wife and I went to a quiz night organized by one of the main local companies that actively help the centre and it was my first time at attending one of these events, for whatever reason, our paths had just not crossed, or had I just been 'conveniently ' busy before, probably! We arrived and were asked what team we were in, we looked at each other, shrugged and fortunately for us we were pointed in the direction of a table where two couples already were sat.  Introductions were made, Julie and her husband and Martin and his wife (as you know, all of gods nice people are called Martin) and we sat down, the strange thing was, M.S was not even mentioned, at least not to start with, so there were no feelings of awkwardness, no comparing of notes, nothing, it just had the atmosphere of a quiz night!  The first couple of rounds came and went and it was then that the main 'vested interest' for all of us was brought up, "so how long have you had it then", I was asked and from that second on, the guard was down and I felt the weight of this 'Bastard Thing' begin to just leave, I began to relax and Julie and I began to have one of the best, informal conversations that I have EVER had with anyone about M.S, even the guy's in the white coats at the hospital could not hold a candle to our chat!  It was honest, it was blunt, so matter of fact, it was funny, it was emotional but for me, it felt more than anything comfortable, it felt right, two members of this shitty club we are all in, two people who had never met up until then, just having a chat, a very nice chat!

         What was equally as good as far as I was concerned was the fact that my wife could hear from another M.S'r, the things that I have mentioned about for years, the aches , the pains, the mood swings, the emotional shit storm that you go through, the forgetfulness, the cog fog, the obvious and the not so obvious stuff.  It's not that she never believed me, I think she gives me some credit, it's just that I felt it was so good for her to hear it from a stranger to us both, that these things are very real, it's not just me!! A truly great night was had by one and all and the first of many more to come I hope and a big up to Julie and her husband and to Martin and his wife for making what initially for me could have been a potentially very awkward evening, into a great night, thankyou so much.

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           As I blogged last time, I had definitely gone and wandered off the path, wherever the fuck that path is taking me, was I beginning to feel unwell, no I don't think so, I'm pretty sure that was not the case, after all of these years, I think I know what to look out for! No, I think that there was a more 'cerebral' thing taking place,  I could not put my finger on it at first, I knew it was something deep within me, I was beating myself up so much, as I said, I was down, I was sad, I was angry, I was generally just feeling sorry for myself!  As we all know, when you start feeling sorry for yourself, a lot get's kicked into touch, you tend to lose your focus, sometimes quite literally of course but that goes with the territory, by that I mean my eyesight, the physical act of seeing and looking was getting a bit tough for a few day's, thankfully that shit only lasted very briefly! The other 'focus' I mean is a whole lot  more than using the eyes in your head, I mean to look 'within', deep inside to maybe see what is going on in there, the 'focus' I am getting at is the kind we all sometimes lose, I think you know where I am coming from!  This focus  is basically an 'umbrella' title for what is usually a whole load of 'stuff'!  These can range from personal issues, by that I mean our own 'well being', whether it is our physical health, our mental health, our relationships, whatever, as a rule, you let one slip and it's not long before the rest follow, get the picture, oh yes, I think you do!

I'm not a big fan of 'profound' statements or sayings, I always tend to think, a smart ass must have thought of that baby, however the one above caught my eye, 'cos it's true, 'cos it's real, 'cos it's simple,  yet oh so effective, goddammit!!
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Staying focused is probably the hardest thing that an M.S'r,  any M.S'r has to do, it's a bit like having a beautiful garden, to keep it that way, you have got to keep working on it, on one hand, a labour of love and on the other, a fucking pain in the ass! Both require total focus from you, both you can get help in various forms but ultimately, it's down to YOU!

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Another of those 'wake up and smell the coffee' moments also happened to me recently and it was one of a culmination of incidents that made yours truly, really look deep within and possibly 're-evaluate' me and my life with M.S!
On a recent weekly visit to my M.S Centre, I went through a bit of a 'profound' moment, yes I no that sounds really pompous, well for me anyway but that is a very apt word for this particular incident!  I try to arrive an hour earlier than my usual visit to my therapist in order for me to have a chat with fellow members!  It was busier than normal, a lot of unfamiliar faces to me  at first but I eventually found someone I new, sat down and started to feel more comfortable and more adjusted if you know what I mean, I think you do, in my case, not 'sitting' comfortably, being comfortable 'upstairs', in my head! During the conversation with my friend Rose, I became aware that a lady on the table in front of me, had turned around and was listening to our chat!  This did not bother me in the slightest, as you may know, I wear my heart on my sleeve all of the time, join in, the more the merrier as far as I am concerned, she then proceeded to 'bounce' her chair near to us in order to join in!  This was great, come on in, fill your boots madam, fortunately for me, Rose new who she was and she proceeded to introduce us, "Martin this is Tracy and Tracy this is Martin"! I must be honest, I had heard her name mentioned a few times before but we had never met in person and by all accounts she had been really knocked down with  this 'Bastard Thing' but was now on her way back up and by Christ was she happy about it and she wanted to tell me so much that things in her life were looking so much better!!  I must be honest, at first I had a bit of a job understanding her, she so wanted to tell the world that things were better for her, I found it hard to understand her because  she was speaking so fast, I was glad that Rose was with me because she seemed to have this uncanny ability to understand what Tracy was saying and in turn, let me know what was being said.  It was not too long before I began to cope and follow what was being said and then,  it hit me, like a smack in the mouth, 'I' used to do that, I would speak too fast, people would have difficulty understanding me and I know for a fact  that it used to annoy the hell out of me because I would always know what I was saying and YOU would be the fucking dumb ass for not understanding ME!!  So I am pretty sure that Tracy must have thought I was a bit of a dumb ass for initially not grasping what she was saying to me, fair enough, she had me bang to rights!!
The single most noticeable thing that came across was she was SO happy, she was so happy that the physio she had been doing was now  working, she took great delight in showing me that she could stand up with the greatest of ease, she did this demonstration so many times for us to see, we had to tell her to slow down because she would wear herself out!! 

      Here was a woman, who despite this 'Bastard Thing' doing it's best to mess up her whole body,  in fact her whole.......everything!  She was now kicking back at it, she had been to the bottom and was now coming back up!  She took great delight in telling me that her  private life was good, how much she loved the really cool jacket she was wearing, how much her house was becoming how she wanted it, everything about her was 'good', her beautiful smile and her constant 'thumbs up' was fantastic, this was a woman who by all accounts had been pretty down but now she was just the opposite, it was lovely to be in her company for part of the afternoon albeit for only half an hour but that brief time certainly made me think long and hard about myself!  For starters, her happiness and her pleasure was so infectious and for this not to be able to come across to anyone, they would have a heart made of stone and no soul! I only hope she did not think I was the fucking taxi driver like so many seem to do, killing time waiting for his next collection, I am getting so paranoid about that, I mean, do I even look like a taxi driver!

  

There lies the rub, do a lot of people still think I am not even one of them, do a lot of people still think that I don't know what the hell I am talking about, should I be on the one hand pleased, or should I be annoyed that a lot of people I meet still think I look ok?  When I tell this to family and friends, they virtually all say the same thing, that I should be so pleased! Although I am getting to grips with that notion, I cannot lie to you, it is still something that I find hard to deal with, stupid I know, perhaps in a strange way, I still feel so guilty, especially if I am talking to someone who is in a far worse condition than me and they have been diagnosed for only a few years and I am walking about!  Maybe it is just me, I don't know, still need to work on that one, I'll deal with it as and when.

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           I still even now think to myself sometimes when I am at the centre, I still  think I am a bit of a fraud, sometimes I perhaps think I should be a bit more 'low-key' than I am, perhaps I should do more listening and just keep quiet, I don't know!  I do a lot of listening anyway, I think I do but I will talk about it if called upon for my opinion not for advice, two different things entirely! Maybe you can understand where I am coming from, or maybe not, am I being to hard on myself as usual, should I just allow myself to go with the flow, shut the fuck up and join the party!  I know what you must be thinking and I don't blame you for it but it is still so hard for me to lower my guard and just be who I really am!  I still feel it is such a thin line that I am walking on, usually when I do my weekly visit to the centre, on one hand being seen as 'Martin' the nice guy and then on the other as 'Martin' the guy who is a pain in the arse, Christ I would so hate that to be the case! This is a dilemma that I can deal with when I am 'away' from the Centre and all of my M.S peers, without any problem, I am referring to my 'work life' of course. I am far more of an 'abrasive' character,  'nicely' abrasive I might add, who has no problem holding my own against my work colleagues at all, no question!  However when it comes to exposing the 'real' Martin, going out on a limb, being completely natural, warts and all, I know that I am 'still' holding back something of me!  What am I scared of, what is the problem, I am only kidding myself, nobody else is bothered and that is so obvious and why should they be, they never knew me back in the day, as far as they are concerned, I have got nothing to prove to them at all, period!!

                    It is the times of my own 'self assessment' of me that I become so aware, that I was out in the wilderness for far too long, such a long time that even now, I am still not 100% honest with myself, I am with everybody I meet, everyone who asks me about M.S, anyone who asks for my opinion, that, I can handle without any problem!  Now that must sound pretty weird, fucking crazy more like but I still feel that I still have to make that last leap and as I have said so many times before, the main thing, the only thing that holds me back from being a fully paid up, life time member of this unique club is my 'acceptance' of this 'Bastard Thing', or is there something else!  Until that day happens, I am destined to be in a form of 'limbo', neither up or down, in or out, just floating!  This is probably why I still, to this day find it so hard, so FUCKING hard, to relax, I just will not allow myself to become fully relaxed, I fight it all the way and the reason is quite simple, I am still too scared to!  I have been seeing Carrie at the centre for well over a year now, she is the therapist that I see each week, I look upon her as the angel who is helping me to try and  relax!  However, even when I see her, I  fight to keep my eyes open, never allowing myself to fully go under her spell (ha ha). I will talk and talk, I fidget, I just cannot lie still, I must be so frustrating, I probably drive her up the wall but to relax, is something that I just cannot do, as stupid as it may sound, I am frightened to, something buzzing around in my mind just will not allow me to completely switch off! The meditation I have been 'dabbling' with has helped a 'little' bit but not completely, I just will not allow myself to relax for any length of time!

            
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OK, enough is enough, self analysis is over!!

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         Ok, a couple of day's have lapsed since I last did some of the  'blog prep' work that you see above, so I have decided to go balls out, allow myself to become totally exposed and lay my cards on the table!!  My wife has been beating me to get things out in the open for so long now and I realize it is time for me to get one weight off of my chest!  I have told everything about my journey so far with this 'Bastard Thing', the good the bad, the funny and the sad, everything, now that the cork has popped, what the hell, it's out there, love it or loathe it, it's there and I can't put it back and I don't want to now anyway! However, there has been one thing that until now, I have not mentioned, it is something that has held me back for all of these years, not just my own acceptance of M.S but the acceptance of M.S and me,  from  my own parents! My immediate family, my wife and my girls have from June 2000 given me unconditional love and support all of the way, right from those bad day's, those oh so fucking dark day's right up to today where my physical health is a million miles away from what it was! The bonds I have got with my closest friends are so strong, the deep love that I have with them is almost as strong as it is with my wife and girls and for an old 'Rocked -out- Metalhead' like myself to say so, is a bit of an achievement I can tell you! However, I never got the same support from my own parents, from day one, the help was never offered, phone-calls were rare, the visits were brief, there was never the offer to take the kids off our hands for a while, to give my wife more time to concentrate on me, these basic things were never there! They would inquire about my health but they would carry on with their lives as normal and for some of the time, I was too ill to notice and had a much different agenda to work to!  I suppose it affected me much more than I thought and in the years that have come and gone since, I have given even more thought to it and realized that it has been very much the elephant in MY room so to speak! 

So I suppose the point I am making is that during these years of recovery and relapse and to where I am now, they have caused me great psychological  hurt and even now I have never gotten over the fact as to why they basically abandoned me in my 'hour of need', I can't hate them for it and I never will but I will always be saddened by it! 

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           I suppose I have tried to suppress this as best as I can for such a long time, I just can't and won't do it any longer.  Let's face it, the cord was cut once in my life but that cord has now come back and become a rope but enough is enough, I have to put 'me' first now!  I must start to think more about me and the people who matter the most to me, I know that I have taken a long time to do this but by me writing my thoughts down, I have taken the first steps to acknowledge the problem!  Blood may be thicker than water but that rope has got to be cut, I'm changing trains and heading off on a different track now and I can't take any heavy baggage with me!!

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 Where do I go from here?

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       Well my friends I reckon that there is only one way and that has got to be forwards!  I have now started to to take steps to overcome the main obstacle, just by putting it down in words and reading it back to me has helped, no question!  I owe nothing to nobody, except to 'MYSELF' and I owe it to 'MYSELF' to return to the person that I was, I want to be that guy again!  I am now fifty four and I know what I wake up to everyday,  my parents are in their late seventies and early eighties respectively, they are now in the twilight of their lives, they may have their own reasons for the way they have been with me, I just don't want to know or to care anymore, I can't and I won't let the way they are have any effect on me from now on!

                So, my story is by no means a unique one, personal to me of course and I am sure some of it, others can perhaps compare to events in their lives too, either way I 'aint done and I have no plans to shut up shop just yet!  So if you want to stay and join me, you are more than welcome, the more the merrier!
              Until next time, I hope you all stay well, don't hang onto any heavy baggage you may be carrying, just let it go, it's only holding you back! Of course, it goes without saying, keep on spitting this Devil in the eye.
                            Bombs Away Dream Babies.X  

An Unwelcome Visitor : Chapter:27

When sadness hits, it hits hard and show's no mercy!

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On the outside, I always try to give the impression that I have got this 'Bastard Thing ' under some sort of 'control'!  I wish!! I have not got it under control, EVER, nobody does, it is always there and we all deal with it differently! I just deal with it in a way that suits me but it is always in my thoughts and most of the time, it is a permanent battle! I just have to be flippant about it, to be contemptuous towards it, this is the way 'I' deal with it!!  I am one of those M.S'rs who has the RR type, which as we all know, it comes and it goes, never for the same amount of time and always with a different game plan when it does! I do know I am lucky, Christ I know that, I still feel a little awkward when talking to a fellow M.S'r who may be  in a wheelchair but as I always say if asked, I may look good 'outside', thanks for saying so but there are times when I feel like shit inside, only another M.S'r will know what you mean, however,  there are other people who still do not think that is possible! It is not that they doubt your word or anything like that, well most people anyway, the easiest way I have always found is to simply tell them that there is a hell of a lot that is going on inside and just because you can't see it, these things are very real!

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               As I mentioned in my last blog, I have just had a fantastic time in Paris, it was truly, the best of times and I suppose, it is only to be expected that I should eventually, like now, go through a 'down' period, a reality check if you will and I have landed with a bump!  Although I was expecting it, my adrenaline tank has run a bit dry and I am now in  that period you go through 'between' the good times and those times when our normal everyday lives, our work lives in my case, are designed take precedent over everything else!  This is, in a way, good for me because it takes me away from thinking solely about M.S, it stops me feeling sorry for myself, well, usually! I try to keep the two separate if at all possible  but there are times when a 'wave of sadness' engulfs me!  Don't get me wrong, I am not talking about a relapse you understand, I am just referring to this constant reminder that you have got 'IT' and you have to deal with 'IT' for the rest of....... yadda yadda and there are sometimes when I just cannot be arsed! 

          I think the main problem is that I am just a bit pissed off in general, not depressed, well not that I recognize anyway, just one of those grey periods that we all go through now and again, especially M.S'rs, no point in denying it because we all do, OFFICIAL!!  Maybe it is because everything is gearing up for winter, I don't know, it is just that we all go through it differently, of course, that is human nature, not just because you have this 'Bastard Thing ' to contend with, now that would make us really boring! Thank Christ it does not turn us into robots or automatons, although that is what it would like I'm sure!

        I suppose, I am a tad more of an angry Bastard than normal at this moment in time, it will pass don't worry but it is just that there are times when it is such hard work!  I have spoken about this very subject to a lot of my M.S friends and all agree, coming to terms with it, accepting it and possibly even liking it, all of these feelings can and do cause various emotions, anger, frustration and ultimately some sadness! I am speaking for myself now you understand but these three main emotions of M.S that we all have to deal with, these  three elements that are so much a part of this 'Bastard Thing', for me at least, even after all of these years, I have changed but they are just the same!  I would always say that the main emotion that was always present in my case, the hardest to deal with, was always anger, without doubt!  I am doing my best to deal with that and I think I am winning, however,  sadness is always there and to  deal with  sadness, which is equally as destructive, it's just a bit more subtle in the way it can take hold of you! I am aware of it, I am aware of it's 'power' and I wish I was able to deal with it far better than I do, I shall have to find a cave somewhere and go off and have a good chat with a Yogi! I know I have got to redress the balance, dealing with these two emotions is not easy, a different approach is what is required but I have got to do it in order to keep things real, for me and everyone dear to me!

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      'Acknowledging' the 'Bastard Thing' is not the only thing that can be hard work, just having to do the basics, eating right, drinking right, remembering to take medication, all of these can be such a real pain, I am fortunate these are just hard to stick to at the moment, things may be different in the future, I just don't know, then again, who knows!  I get so pissed off with just being GOOD all of the time, I know it is the best thing for me, to be good, to treat this ' Bastard Thing' with respect, not that it deserves any,  I know that it helps me to do the right thing but there are times when I just think, 'fuck it', I want to be normal! It may be bad for me but sometimes, it is just so good just being BAD, not nasty bad, just being 'not' how you are  expected to be, what's wrong with that!  If I want to slob out once in a while, so be it, if nobody get's hurt, only me perhaps, what's the problem!  As we all know, you can't stray from the path for too long, you have got to get back and do the right thing because the longer you are away from it, the harder it is to get back on it, FACT, another reason why I hate M.S so much, it plays with you, it toys with you, basically, it's a fucking bully! 

             Then of course, I think that if I am not strict 'enough' with myself and I let things slide too much, other people will start to think differently of me, "poor old Martin, he used to be such a guy, now look at him, don't you feel so sorry for him!" This is, fortunately for me, far from the case but that my friends,  is what scares me the most, not succumbing to whatever lies ahead if and when,  just the thought of hearing those sentences, the very thought of  being a burden, having to be cared for around the clock, I just don't want my family and good friends looking at me with regret and sadness! I'm sorry if that offends and that is not my intention, that is just my personal feeling,  so PLEASE, PLEASE don't think ill of me!  Anyway, perhaps being the naughtiest angel in heaven 'aint so bad, yeah, I like that, I could start a band, fuck all those harps and lutes, dump the white bed-sheets and get rid of those fluffy white clouds, just give me smoke bombs and explosions and a light show to die for (oops! no pun intended!!) and just give me a Les Paul and a wall of Marshalls! Then, perhaps I think I could be pretty happy with my 'eternal' lot!  Hang on a minute, perhaps I should go 'downstairs'? I believe that is where all of the best parties are anyway, right?

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     It's so sad that we have to be so good all of the time don't you think, play by the rules, 'it's' rules, the M.S rule book, of course, you have to concede to defeat, not now and again but all the fucking time, we can never win, now that's not fair play now is it!
All I am saying is,  a Big Mac and fries does look good now and again and a plate of salad or a bowl of beans and pulses can be so hard to conjure up any enthusiasm for all of the time, I know it is better for us, I know it does us good but come on! Obviously  moderation is the buzz word and  the more you eat of the 'wrong' stuff, the more you will start to look like a slob but every now and again is ok, right? If you want to be bad, just be BAD!  When you think about it, what's the worst thing can happen to you now, ok you could be hit by a bus, agreed, you could be struck down with some other illness, you could even get caught with your best friends wife or husband, or even develop a mutual attraction with a total stranger, now wouldn't that be COOL!!! Just to think for a second, you may have a chronic condition but to still be attractive to someone else regardless, you could gaze into each others eyes then you could chomp down on that burger, yes now THAT is such a beautiful concept, got to be better than any drug!

Bad does not mean nasty, just a bit naughty!

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You can be NAUGHTY but you don't have to be NASTY, go figure !
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THE NAUGHTY DIET AND THE .............."good for you but oh so boring and................green diet"!

"Bring it on!"

"Not again"!

"Oh no, please"!

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           I am sorry if this blog all sounds a bit too ' down there' on my part, a bit too 'negative' even but I am sure other M.S'rs will know where I am coming from that's for sure and it will pass, fortunately  it always does, so far anyway!  Just remember, once in a while being BAD is GOOD, it keeps the wheels of your brain turning, the trouble is, I think that we are expected by all and sundry, to be good ALL of the time!  We may have a Chronic condition, we may, in some cases,  be severely disabled,  or we may not, like me but that doesn't stop me feeling sad, or getting upset or angry, my wife finds that difficult to understand and if we ever have a row, you can bet your life it is her way of shaking me up when I start to feel sorry for myself!  So just be bad once in a while, how you do it, up to you of course, you just do it the way that suits you best, I can't tell you how to behave and I would not dream of it,  just wear 'black' once in a while, just be naughty 'wicked' once in a while, I know a lot of my M.S mates still have that 'wicked' sparkle in their eyes and a lot have 'that' type of humour to go with it! Jeebus,  it's a bit 'tedious' having to be seen, albeit 'hypothetically' dressed from head to toe in white satin, all of the time and being bad stops you feeling sad!
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                   In my case, being BAD does not make me an ASSHOLE, just an 'ANGRY'man........sometimes!

 and being BAD does not make you a BITCH, just a.........'FIGHTING HELLCAT'!

   If there are those that think it does, they should try living with this 'Bastard Thing' around their neck like we do and perhaps try walking in our shoes once in a while!!  Do you think you can buy an asshole suit or a bitch outfit on-line these days, by jove, I think I have found a great business opportunity,  a eureka moment
if you will, Assholes + Bitches.com!!  I could become a party planner, I could organize Asshole and Bitch nights, Nuns and Priest nights are SO last year don't you think, " hi, I've come as an Asshole and my wife.............she's a bitch of course", now that would be a real ice-breaker anywhere!!
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Nice song but ....................

.............keep your 'inner' YOU never too far below the surface and remember........black is good!!

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   All my feelings this week haven't been helped due to something that was said during an after dinner chat with my wife, daughters and their boyfriends.  All good humoured banter, when one of my girls came out with a statement that stopped me in my tracks!  "What was dad like when you met him, we are all a bit confused because when he is with his mates nowadays, he is just so different, is that what he used to be like?"  "What do you mean, different" she asked? "Well he is kind of 'deep' and we know he is a 'metal head' and he loves his Rock but sometimes he sounds like an old hippy!" You have to appreciate, my girls are all in their twenties now, so things are easier to explain and even talk about without fear of embarrassment from either of us but my wife's answer still managed to make me stop and think!!  We had both had a couple of glasses of wine  and were pretty relaxed, certainly less inhibited and she began to tell a few stories about this crazy guy, from what seemed like oh so long ago, who just happened to be me!  We all listened and the one thing that I noticed for sure was that the guy in the stories, me, was a bit of a laugh, even she thought so and they were all wetting themselves laughing at the exploits of this man from long ago!

Happy,Sad, Happy,Sad, Happy,Sad!  Must work harder!!

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 I know I was younger, life was less intense I suppose, I worked and I played, I would say that back then, my life was pretty good and upon reflection, I had no complaints!  The question I am asking myself now is..........where does this person go and why does he only come back once in a while?  When the laughter had eventually died down, my wife turned to me and simply said that there is no real reason why I can't still be that guy, "you don't have to be quite so crazy"  just a little bit now and again wouldn't hurt"!

        She added, "You must put a hell of a strain on your heart and there are times when you look like you have the weight of the world on your shoulders"!  Of course she is right, I still keep beating myself up, that there are times when it just eats into me, It still does even after all these years. Then she had to spoil it by saying one of my most hated of all of the phrases, "just make the most of what you have got!" Of all of the bullshit and bollocks that an M.S'r hears,  far too often I might add, I know that no harm is intended and I know that 'perhaps' it makes sense but it 'aint what we want to here now is it!!! People mean well when they say it and ok, I kind of respect that but God I hate that term!  I don't want to make the most of what I have got and I am fucking certain that ALL M.S'rs think exactly the same, I want back what was mine and they want what was theirs, what was so cruelly taken from us when we were  not looking!

Of Course I do!
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Of course I smile, of course I laugh!
Maybe not like I used to,
Perhaps just once in a while,
........but I do for Christs sake, I know I do!
If you give me something to laugh at,
A real side-splitter or right old gut-buster,
I'm your man and I will laugh my ass off!
Maybe I'm just too selective on what makes me laugh these days, Too choosy, too picky, I don't know!
I  know that you busting my balls, don't make my it funnier, 
Perhaps it takes a bit longer these days to reach the spot,
You know, the 'laughter gene'!
.....but it's still in there........... somewhere! 
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 You would think that after all of these years I would have mellowed a bit, considered shaking hands with it, perhaps even throwing in the towel and admitting defeat!  Well, lets think about that for a minute shall we............................................NO, I'm sorry, can't do that, for starters, that's just not me, you see I have got to be angry at something and what better thing than this 'Bastard Thing'!  
       Perhaps I need a bit of Reiki, perhaps my internal setup is all to cock at the moment, maybe my special Angel who I see every week to sort out my 'inner being', has got to delve a bit deeper into my soul and help me get back onto the right pathway, MAN!  I know that I have been working  hard these past few weeks, my 'work' world does seem to be overloaded with dickheads at the moment and I more than normal, seem to be unable to tolerate them, I much prefer being on my own, immersed in my own workload, don't get me wrong, I love most people, I just don't like being around dickheads!   I am 'communicating', I do talk to them because I have to but all of the time I am thinking of being in a far, far better place that's for sure!!

That's a polite enough slogan I reckon but sadly, with a lot of my colleagues, I fucking mean it and they still don't get it!!!
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I need to relax, to chill a bit more, if I still smoked, maybe I would spark up a big doobie but I don't,  so that's out of the question, maybe I should get a dog or a cat!  They would understand how I sometimes feel and it would be therapy for me, they always say that cats and dogs do have a certain.....something, if they can't help me, they can just have a smoke on my behalf!  Perhaps I am just thinking too hard about my life, making things harder for myself........ don't know, i'll get back to you on that one!

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By the time this chapter reaches you all, I have had some Reiki and I do feel a bit more chilled, my Angel tells me that there is a lot of resistance and a bit of conflict going on in there somewhere and she is a witch, so she knows! I am going to Glastonbury in November for a few days, I feel I need to bounce around the Tor, find a better 'pathway' to follow and return a better person, I'm still a bit too far away from being 'totally chilled out'! Finally, to those out there that know, the 'Tigers Eye' will be the one, that baby is going to take care of business from now on!!

Until next time, stay well, try not to be quite so angry like me but don't worry if you are, it's usually only at yourself, don't let sadness get a hold either, that's a sneaky little fucker and it will pass through eventually, just make sure it does not creep in the back door when you are not looking because you have to deal with that one face to face, so be on your guard and keep on spitting this Devil in the eye!
Bombs Away Dream Babies.X

An Unwelcome Visitor : Chapter.26

An English M.S'r at large in Paris!

                   Hello my friends out there, my week in Paris is over, all too quick because every second, every minute and every hour of every day, I will always remember because Paris...... where have you been all of my life!!

                 We boarded the train to Paddington at some ridiculously early time for me but my 'adrenaline' levels were keeping the 'Bastard Thing' under control fortunately, so it was not an issue and I don't even think that it was mentioned by either of us.  The journey to London was soon over and we then caught the underground to St.Pancras International and when we arrived there and gone through passport control, our trip on the Euro-Star had, at last begun!

      Our journey at this stage was still very early in the morning and once we were rattling along, the gradually awakening landscape became pretty monotonous and for the twenty minutes in the channel tunnel, it became REALLY boring, so much so, I did not even realize that we had emerged from it and for about  ten minutes I did not even know we were on the French side! We were asked to alter our watches, one hour ahead and it was then that our phones changed over to French networks, the wonders of modern technology! It was about this time that I thought I should make a visit to the toilet, well it's not everyday you get to pee on the EuroStar and in 'French' France!!  So I made my way down the aisle and went into the toilet,  it was all 'stainless steel' hardware with little 'cubby-holes' dotted about and signs just about everywhere, 'do this', 'don't do that', 'put it here', and 'definitely not there', a bit freaky if you ask me, nonetheless, I tried to go, and I tried and I tried.........and I tried again  but I just could not go, Christ, don't you just HATE that!! I suppose knowing that there was someone outside waiting didn't help much either, so I washed my hands and made a quick exit!  Soon a message came over the intercom that we would be arriving at Gare Du Nord in five minutes, this was it, our holiday in Paris was about to begin and as my friend Caroline (@TheGirlWithMS) often say's in all of her blogs 'let's do this'!,  So Paris, I am here, take me as I am!!

     
 
              Confused, bewildered, wary and all of the human emotions you could think of were all spinning around in our heads all at the same time but hey ho, upwards and onwards we went!  After clearing the booking in desk, I really needed that pee but I also needed an Espresso and those of you who know, the place is full of places to buy a cup of coffee but 'not' so many 'obvious' places to have a pee!!  I chose a coffee shop and duly headed towards it, armed with my best schoolboy French and a pocket full of Euros, 'bonjour monsieur, deux Espresso s'il vous plait', the guy looked at me quizzically, 'deux.....monsieur', 'oui....deux'!  Now I love Espresso coffee, I know it comes in tiny cups and I know that it is very strong, you love it or hate it,  I love it!  He proceeded to hand over two tiny little disposable cups of said coffee to me, I handed over the money and when he turned to give me my change, the picture on his face when he saw me pouring one cup into the other to make a bit more than one mouthful was one of those magical moments,  'monsieur, it is Espresso, it is very strong'!!  With one of my best 'winks', I said, 'aint that the truth, merci', quickly I turned around and stifling a giggle went off in search of my wife and then 'le toilette'!

        Again those of you who have been through that station will agree with me, if you are an M.S'r or are disabled, there are a lot of lifts and escaltors so getting about and moving to each level is relatively easy and for those like myself who are 'reasonably' able, the stairs do have bannisters and the steps themselves are quite wide, so with a little care, it is not too bad getting about!  Anyway, I finally found the toilets, made a right prat of myself because I thought that the queue was 'for' the toilet but only to find out it was the queue for 'change' to use the toilet,  well Martin, this is France after all!

               Right then, let's go, so off we went in search of the hotel, which we had been told beforehand was about ten minutes walk away but in which direction, neither of us had a clue, what the hell it's all part of the holiday, or so we tried to convince ourselves!   We had a map with us and we would stop at frequent intervals and look at the map, look around us, make out that we new where we were going to, start arguing, look at the map again, argue again, I know, I will look on google maps on my i-Phone, shit, still searching for a network,  I know, I will just have to ask, no problem, or so I thought!  Excuse moi monsieur, ........s'il vous plait, parlez vous Anglais?  I must have asked about three or four people and then there was this guy, chomping on some sort of pastry thing, reading his paper and having a cigarette, all at the same time I might add, bless him, he came up to us and in very good English said, 'do you need help', yes please, do you know how we get to this particular address?  First of all, he shrugged his shoulders and said, 'mais non, I am sorry', but he then said to give him a few seconds and he will phone his friend and proceeded to stuff the pastry in his mouth, stick the paper in his ass pocket, then pull out his i-Phone, grab the address off of me, punch in the number of his friend, or so I thought, start to speak so fast, I did not have a clue what he was saying, then a few seconds later, he beckoned me over to look at the screen, showed me exactly where our hotel was, his mate turned out to be SIRI on his phone and he was basically showing me our hotel on Google maps, DOH!

We were literally across the road and two streets away from our hotel, I thanked him in French and as we left he shouted out to us, 'good luck in Paris', not too sure if he meant it or he was just being sarcastic, I like to think he meant it!

We eventually got to our hotel, down a 'typical' Parisiene side street, buildings with lots of ornate iron balconies and painted shutters, this was the Paris I was longing to see, this was how I had always imagined it to be! 

The staff were so welcoming, spoke perfect English which really pissed me off because I had been practicing my opening speech but hey ho, more chances later!  Anyway, we went up to our room, total contrast to the building itself, very modern decor, very French and everything that we would need, it was perfect!  I had taken my Modafinil that morning and it was doing a good job in keeping my fatigue under control, in fact I felt fine even now that my adrenaline rush had started to level out, we were home for the next four days, we were now unpacked and both ready to start 'exploring'!  Paris, I'm coming to getcha!!!

Sniff that!!!!  That my friends is PARIS.

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Ok let's get to some 'serious' points about getting around the streets of Paris!  On the whole,  the streets are not too bad to deal with if you are an M.S'r, most of the 'main' streets do have wide pavements, either tarmac or paving slabs, so not too much trouble at all, every few yards there are 'pedestrian' crossings, consisting of a 'Red' don't walk sign and a 'Green' walk sign!  A word of warning/advice, wait until EVERYBODY starts to walk across before attempting your first steps into what could be oblivion if you are not careful!! They do stay 'green' for quite a few minutes, so if you do need time to cross, you have got it and don't be alarmed by the sound of car horns blaring, they are not at you (hopefully) this is Paris and when in Paris if you have a horn in your car, you  use it, it is a right of passage!!

    One piece of advice that I had read about and really is important and that is if you need to use a toilet regularly, here is a good tip!  All cafes will let you use their toilet but would prefer you to purchase something . This should prove to be not much of a problem, take time out to enjoy Cafe Society, have a coffee, or a glass of wine or a crepe, perhaps one of the many delicious pastries to choose from!  The thing to remember is that you can sit and just rest, nobody cares if the coffee or whatever lasts you ages, so it's usually a win win situation, you pee, you drink, you rest, happy days!

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There is a 'Heaven' and it is up there!!

My trip to the top of Montmartre was 'arduous' and 'joyous' both in equal measure. Firstly it was a very steep climb to the top and it was mostly cobbled streets, steep public staircases but it was oh so magical , full of artists drawing in the street, the whole place became almost like a village smack bang in the middle of all of the noise below, it became my vision of what Laurel Canyon used to be like in the sixties. I was aching like hell and needed to stop and sit for a while!  I had made a promise to a special friend that I would find a small cafe en route to the top, this we did, had an Espresso and for the time we sat, just sucking up the 'vibe', I just began to grin, then I smiled, ordered another coffee and I just kept on smiling, I was SO happy that we had made it!

      So here's to you Sun, I made it and I enjoyed the hell out of it, just like you said, God bless you Doll, I found a welcoming Cafe and the Coffee was good, so when you are ready and your story telling is ready and the desert becomes the Ocean, just you divert that big old Diamond Head rattler over to Montmartre, I have said that you will be back one day, so they will be ready and waiting, with a chair and a table, a chilled bottle of Bordeaux, a glass and a whole shit-load of inspiration!X

The Stairway To Heaven (and sore feet)

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The next stop up was to the Sacre-Couer, the highest point in Paris!  Now if I am to be honest for a minute, although I am an MS'r I was getting about pretty ok and with dogged determination I was marching on through the pain barrier!  We were still walking on cobbled streets and steep steps right up to the doors of the sacred Basilica!  Now as I have said many times before in various chapters, I am not a religious person at all, jeez, I'm far too cynical for that but once inside and staring up to the huge, ornate dome, I suddenly found myself looking towards heaven, I even stopped for a minute to collect my thoughts, my wife stopped and turned to me with some concern, 'Martin, are you ok,' she said to me, 'I'm just praying to the guy upstairs', I said, she looked at me in a very quizzical way and a few seconds later she said to me,..........'why'?  'To see if he will give me the winning lottery numbers of course'!!! 'Why, what did you think I was doing...........oh that, well doll there is more chance of me winning the lottery I reckon!!'

I must point out that there is a 'funicular' railway that can do away with the climb to Sacre-Coeur, it takes about 90 seconds, only costs a couple of Euros, plenty of room inside and you are then subjected to some fantastic views of the city. So you can save time and energy but if you can, do the street climb, it is truly a 'magical' experience! 

  

Dear Lord, get rid of the steps Man, escalators are the way forward!!!

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Back to business!

The next part of our Parisiene Sojourn was an open top bus tour of the city!  Without doubt, one of the best ways to see the sights, especially if you have no desire to queue, or to walk about or risk life and limb being a passenger in one of the many forms of 'Pedal Taxis' that are all over the place, dangerous or what, or you could also sit in the back of a VespaCar and with a bit of horsepower, you can whizz about the city!!!  Now the guys who operate these things must either earn a lot of money doing it, have some sort of pact with the devil or be completely whacked off their tits on something highly illicit!!  Being a passenger on a bus or in a taxi is scary enough but willingly going into one of these is almost like a 'deathwish'!!

....be afraid, be VERY afraid!

Perhaps a bit of 'oomph' is required maybe......

or if you prefer, it comes in white.

           The beauty of sightseeing by bus is that if you are able, you go up to the top deck, if you can't deal with the stairs, you can get on quite easily, usually plenty of help at hand and enjoy the journey from inside, usually plenty of room downstairs because most people go upstairs anyway, so you can just stretch out, you can hop on or off at various stops throughout the tour and you are not held to a strict timetable, so if you want to visit a museum or other sight in the city, you can even get back on when it is starting to get dark and all of the lights begin to come on everywhere, that's when Paris becomes magical, it's not called The City Of Lights for nothing you know!

            As beautiful, as bewitching as this city is, there is no beating about the bush, there are places that are  particularly unfriendly towards disability, well it is old afterall but it is such a shame because everybody should have the chance to experience the joys of Paris!  So if you are planning a trip here and you do have M.S, work out what you want to see, what is available in terms of access etc. for the disabled, have an idea on the availability of toilets/bathrooms, don't forget that you have to pay to use most public toilets, so keep a stash of Euro's in loose change, make sure you have a bottle of hand gel, plenty of tissues or wet-wipes, most toilets are fine but it is always handy to have the ability to 'freshen up', right?
                  Using the Paris Metro, although it is a great network once you get the hang of it, I will be honest with you guy's, it is not that friendly towards disability. Lots of steep stairs to contend with, there a few that have shorter steps?staircases at various stations, not many escalators and not many elevators! Awkward and tiring if you are fit and able, fucking hard work with a suitcase let me tell you!!  However I did see one guy being carried down two flights of steep steps by two friends, his leg was in plaster, they went from Bonne Nouvelle to the Trocadero (Eiffel Tower) and they duly carried him off the train and up more steep stairs!!  Much respect to those guy's, true friends without doubt! 
             Be prepared for cobbled streets and crowded streets, most cafes/restaurants are accessible from street level without too much problem but some are up or down steps/stairs. So a stick or a cane, a folding one is perfect because you may not need it all of the time!  I did see people with 'walkers' and I did see a few 'motorised' wheelchairs, even one young woman taking on the steep climb up Montmartre, if she had M.S or not is irrelevant, she was disabled, on her own and taking it on, that's the main thing! You have to remember, I am writing this blog from the viewpoint of someone who has M.S, although I am someone who can still get about pretty well but during the whole of our trip, I was looking at things with the attitude of, 'I can at the moment but one day I might not, so how will I deal with it when the day comes when I do need help! Also a 'comfortable' pair of shoes or boots is absolutely essential,  I wore a pair of 'Fire-Trap' boots, very comfortable and oh so COOL but my feet ached like hell at the end of each day I can tell you!
              One thing I will say is please don't let this 'Bastard Thing' make your judgement's for you!  I know that you are probably thinking that is easy for me to say, well maybe it is because at the moment, my body is pretty Ok but it has not always been the case, far from it and for far too long I let M.S take over all of my decision making, so much so that I began to dismiss any hopes and dreams that I once had, COMPLETELY!!  Ok, certain things  may prove to be just a bit too far out of reach but please don't dismiss them entirely, if you have a good 'wingman' with you, wife, husband or partner, or maybe a bunch of good friends like the guy on the train earlier, things CAN be done and there are still a lot of people out there, perfect strangers even, willing to lend a hand if you need one!  So just you think about it because we are a long time dead, don't be full of regrets, if you can get one over on this 'Bastard Thing', it's got to be worth that alone, don't you think!!

I was so surprised how much that I loved Paris, not only from a 'tourist' point of view but also as a 'person'!  I know I was only a guest for four days but I adopted the lifestyle so easily, far easier than I thought. All of the usual tourist spots I loved and once you know how to deal with the 'beggars' and numerous 'scammers' that this Capital city, like all Capital cities has in bucket-loads, I always found that a polite but firm 'non merci' did the trick or one of my best psycho stares and they were not too much problem!  I think that I was so carried away with the whole place, I treated myself to a new hat, not the usual base-ball cap anymore, oh no, I bought a trilby, I wanted one the same as 'Popeye Doyle, a la French Connection, couldn't find one anywhere so I settled for one that Leonard Cohen wears these days which I found in a shop in Notre Dame, only cost 9.50 Euros, bargain!  I must admit that I would possibly feel a bit self conscious wearing it back home, but in Paris nobody batted an eyelid so I wore it all of the time, I just loved it!

'Even an old 'troubadour' like Mr Cohen can still look pretty goddamn cool with the right hat!'

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I shall try not to bore you too much,  Notre Dame was a beautiful piece of Gothic architecture with plenty to see at 'ground level', so you don't have to be disappointed about being unable to climb to the top, you can just sit and relax, just take it all in and on the half hour, old Quasimodo comes back from a break and starts head butting the bells, the sound is just AMAZING!!!   You can then take a stroll across the 'lock bridge', you can even buy a padlock, lock it to the bridge, pledge your undying love to that special person and toss the key into the Seine! 

    If you look across at the road-signs on the bridge you will see Boulevard St.Michel, mentioned in the lyrics to the classic song, 'Where Do You Go To My Lovely(Peter Sarstedt)!  You just take a leisurely stroll, looking at  all of Cafe Society, which is why boys and girls, God invented Ray-Bans, so you can look at all of the beautiful people without being noticed!

 

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A trip to the Eiffel tower, purely a photographic trip as far as I was concerned you understand,  I suffered vertigo just staring at it but after a while  was just taken in by it's sheer size, we were also quite lucky, the day we went, the crowds were fine, not too big at all.  All around the tower itself, the paths, the main bridges and the whole of the concourse that went around and underneath the tower were fine and won't present too much of a problem for anybody regardless of disability.  I would advise people on being a bit 'savvy', there are street traders everywhere and people walking around with clip-boards claiming to represent disabled charities, funny thing is that regardless of where you visit in the city, they just seem to be  everywhere, AVOID!!

Seen one Tower, think you have seen them all?  Think again!

       Quite a nice shot when you consider that I had my eyes closed and was holding my camera at arms length!

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     Did I say that I bumped into some old bird called  Mona, I think that was her name, what a miserable bitch, a face like a slapped arse!

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I do love winding up security!

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     Like an open -top bus tour, one of the best ways yo do a bit of sightseeing is to get a ticket for one of the many boat tours on the River Seine! Again, I would recommend that you purchase your tickets online and in the UK before you travel, apart from it saving you money, it saves time and hassle when you arrive!  Travelling on the river gives gives you another perspective of the City, we went during the day but night time cruises are always available, maybe next time. The larger boats virtually all have 'wide' gang planks that go from the boarding areas straight onto the boats, giving plenty of access, plenty of room to get on and off, the pathways leading down to the boarding areas do have 'slopes' as well as steps which makes life a lot easier, the boats leave about every half hour, so there is no need to rush because you are not waiting about too long!  Anyway, while you are waiting you can get some great pictures of the Eiffel Tower, or you can just have a coffee and chill for a while.

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      On the last day of our visit we had decided to pay a visit to see Jim, an old friend of ours who sadly died a few years ago in Paris and he is buried in Pere Lachaise cemetary. It took us about ten minutes on the Metro to get there and on our arrival at the Cemetary, almost as soon as we started walking about, I began to have a feeling of real unease, 'shit, I do not want to start feeling lousy today',  I remember thinking to myself!  The place is absolutely rammed full of mausoleums of every shape and size, incredibly elaborate tombs, some that have fallen into sad states of disrepair, some overgrown  by trees and weeds and some had just completely collapsed!  During our hunt for old Jim, we happened to come across the tomb of Oscar Wilde, it was surrounded by students and people obviously deep in thought, some people were laying single roses at the foot of his grave and looking closer, there are 'lip-stick kisses all over it, they have recently put up a glass screen to prevent people doing this apparently.  Come on, if people wish to pay their respects this way or any other way, I don't reckon old Oscar is going to complain anytime soon now is he, they are only paying their respects to him, not desecrating his grave!!

People are/were just dying to get in here!

          

I think that Mr Wilde would have approved!

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..........something someone forgot to tell me?

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The man in black, very appropriate!

........ssssh, she is the one who keeps me out of trouble!

The cemetary is massive and all of the paths and tree lined Avenues are cobbled and there is no getting away from it, it is really hard work!  My feet and my legs were soon starting to ache but I was determined to find the old reprobate and fortunately there are benches every fifty yards or so which were very welcome I can tell you! Anyway,  onwards and upwards we went and I was just about to say to my wife that perhaps we will come back some other time, she called out 'I've found him!!' There he was, under an innocuous granite slab, just a brief inscription, a couple of pictures and a few bunches of dying flowers, this was the final resting place of Jim Morrison! We both just stood a while in silence, I took off my hat out of respect, not that it would have bothered Jim anyway and all that I wanted to do, I felt I 'had' to do, was to say thanks and God bless you Man!  We were just about to leave when a conker from one of the trees above fell off and bounced down the cobbled Avenue, was that The Lizard Kings way of saying thanks for coming or was he just telling us to piss off!   Nah!, he was saying thanks for coming dude, I reckon he can tell the good guys like me!

         On the way out were approached by an Australian guy who made an 'attempt' to talk to us in French, 'it's ok mate, we're English!' 'Thank Christ for that', he replied!  'Any idea where Jim is buried' he asked!  We fell about laughing at his question, 'how did you know we had come here specifically to see Jim?' 'Well, your hat is kind of cool and your wife is attractive, no offence mate!' We laughed even more, gave him directions and as we parted with a firm 'fist shake', I said to him, 'you know he might not even be in there!' He laughed and said, 'Yeah I'd heard that too, the Bastard better be, I've come a long way to see him, good on ya mate'!  This was just a beautiful ending, in a perfect scene to best of times!

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There are times in our lives that are just so................right, so perfect! Whatever it is, wherever it is and who it is spent with, whatever, it is so perfect and it makes you so happy! Speaking personally since 2000, those times have been a bit thin on the ground, probably because I have been the one who has always put obstacles in my way, prevented me from enjoying life the way it should be enjoyed! Well,  for four days recently, life was good, I was so happy, so much so, it hurt but I did not care because the pain was good and it was self inflicted!  So I will always be grateful to Paris for letting me return to my old, carefree self, well almost anyway, the wife was with me after all (ha ha ).

 

Think about it, don't dismiss it out of hand, however you do it, who cares, just make every attempt to fulfill your dreams, reach those numbers on your Bucket List, just don't let this Bastard Thing have everything of yours!

Until next time, stay as well as you can, be as rebellious as you can and keep spitting this Devil in the eye, Bombs Away Dream Babies. X