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Nick

Another way of looking at it

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Nick

Nothing is very hard and fast when it comes to MS. One thing is for sure, it turned my life upside down, tipped me up and spat me out. But that's life. All you guys and gals in that (horribly named) “Limboland” may consider that somebody somewhere is going to give a precise answer to all your questions and put a label on you. Nobody wants that (apart from Paddington Bear!). But, you see, it just doesn't work like that, guys! A “technical” label, yes; but what does that tell you? Not a lot. My neurologist gave me a good description of my own situation when, at one point, he called it “Grumbling MS”. I knew what he meant (and it was not me doing the grumbling)!


So, anyway, this is my long-winded and probably incomprehensible writing of just how I got around to understanding that it had to be me that was going to do the sorting out.


I should also add that had it not been for the support I had, then things might have been very much more difficult. The (rather inappropriate) word “support” covers the real unsung heroes of my story: my family and friends who put up with all the difficult bits, namely ME!
 

Old Shuck

Multiple Sclerosis is a complicated condition. A beast whose hidden elements can appear and disappear in an almost mythological fashion. Others never seem to properly comprehend or accept these hidden phantoms — yet, as sure as hell, those forms are fact. A clinical diagnosis is one aspect, yet it’s quite a different matter learning to live with such a creature.


“Shrinking the Monster” is one of today's plaintive calls in that battle to understand this particular demon. Yet those very words, “Shrinking the Monster”, depict a statement in contradiction. A deception of a necessary truth. Those with MS have had to learn to understand their real fears, those frightening phantom forms whose shadows were cast loose against their very souls. The havoc those dogs of war created demand a better understanding and a need to seek a proper explanation.


We need grass between our toes and a light summer breeze upon our face. Yet that can prove a problematic space within the artificial slices of these, our western ways.


Strange days indeed where normality accepts “Shrinking the Monster” in this simple fluffy form. A cuddly scare, depicted solely for the silver screens or the pages of a book. Time for that, yet no longer time for those more ancient dusty dogs of war whose howling forms have faded into fantasy. A crisis then, when reality bites and, eye to eye, we face that fearsome creature straight from Hell. You can't turn off the real world as you would a television.


So is it such a good thing that these simple explanations, those “Shrinking Monsters”, seem so justified? No, this is no ghostly tale. Rather, we have come face to face with a differing reality, another truth. And, way beneath our surface thoughts, there churns a far better explanation.


A conclusion you may not come to quickly, but still a fact. A fact that does not sit so comfortably where romance has become a dream.


Old myths once held a truth, an expression of this differing reality, explanations of a complex “real thing”, neither apparent nor visible. The selfsame problem whose answers we now seek. A difficult subject to express. Yet, strangely, ancient minds could do just that. Modern people with all their sophisticated western ways have much to learn in these old forms of noble truth. An unhappy opinion? Yet understanding such subtle differences between myth and modernity is an art worth knowing. You may then come to accept this beast as the real thing.


Keep your bare toes firmly in among the long, cool, grassy dew of a morning meadow.


In our modern carefree world, we no longer accept what our minds truly have to offer. Mythology has been hacked to bits and served up like some tasty morsel. We fail to differentiate, in any real way, from our cosy images of “reality”. Indeed, our present thinking, whose mighty clefts are arbitrary, comes purely from the minds of modern western men. The “Shrinking Monster” is not a real creature. It is simply a denial of a harsh truth. By facing up to that truth, you can discover, as in times past, the real beast. The myth then becomes a legend, becomes a fact, one that can be used in a very special way, as an “amulet”. This token brings acceptance and makes us mindful to concentrate on living well. To accept what is and what is not. This is the only real and proper way to tame your demon. An amulet, a device so real and so useful, I for one would never wish to be without it. I need it by my side. Just like my old black dog, called Shuck.

 

An explanation for all those unknown warriors out there

Here in the West, we have artificially split the world up into “Classical” and “Romantic” forms. You may blame Aristotle and the Ancient Greeks for that. The Classical is predominantly a masculine form, and the Romantic a feminine form. Classical thinking would include the likes of science and maths, while romantic thinking is more akin to art and craftsmanship.


The way we think today is still heavily influenced by this particular way of looking at the world. In modern times, we have used our brains by splitting ideas into these single forms — rarely do we put the classic and romantic forms together. In this respect, it is interesting to note the possible differences between men and women's approach in coming to an understanding of their own MS. On the classical side is the thought that by trying to use our brains in new and innovative ways, we have the possibility of improving our situation. Just as learning the art of exercise helps bring new pathways across our neurons, which in turn can provide improved mobility, the ability and skill is in learning the art. In this example: learning how to do the exercises. The exercises themselves being “classic”, our skill in learning how to achieve with them is “romantic”. Together, it works.


In Britain, the arrival of Christianity saw the classic Greek form of thinking dominate with a big submergence of the older pagan world with its completely different way of doing things. Celtic minds in Britain clearly did not split the world up in this classic/romantic divide. In other words, they must have had similar thoughts but appear to have used them in a completely different context.


The pagan god, Odin, had “dogs of war”. One dog was Shukir, who became the old English legend of “Old Shuck”, a phantom dog in East Anglia and, interestingly, the basis of another legend: that of Barghest, from which we get the modern English word “ghost”. Of course, to the pagan world, these dogs and ghosts were very real, but not in any way that we can understand today. People in those distant times could easily accept a complex issue in classic fashion and then be able to express it in a romantic style in one single process. Hence such legends as Shukir. Today, we no longer believe in these ghosts but we do hold faith in the internet — you can't touch, taste, or feel either of those things. In those distant times, the ghosts were real but the concept of neurons in a brain would have seemed incomprehensible.


Our problem in today’s world is with us thinking exclusively in this particularly modern way. The Hound of the Baskervilles, for example, was based on “Old Shuck” but, of course, Sir Arthur Conan Doyle had firmly placed the story in modern fiction with real black hell hounds. Odin's original dogs were real enough but lived quite comfortably only in the minds of those ancient people. They knew and understood this and accepted it as a fact and not as the myth that we read today.


Part of the MS “problem” is something similar, it involves the mind and has a “classical” form in one sense: that of being able to be clinically diagnosed. Yet it is still perhaps more widely understood by the way in which we take the whole situation in hand. That is an extremely useful “romantic/classic” aspect and one that we should be taking full advantage of. Unfortunately, with this western thinking, it often ends up with us ignoring our “romantic” side as unimportant and putting too much emphasis on the “classical”. We therefore end up fighting the wrong monster: that crazy, fluffy, shrinking version, provided for us by well-meaning but often misunderstanding people.


Thinking laterally is one way of getting away from our “normal” thoughts and flexing our brains in new ways. You could say, by allowing the hounds of hell in for real!


Having been interested in this long before the arrival of my own MS, I was surprised to be able to use this knowledge, helping me adjust in the way I now needed to think. One of the areas I had read a little on, and was already intrigued by, was some very old Buddhist thinking. Clearly not from any of our western ways.


One of interesting concepts describes “The Four Noble Truths”. These are: Truth of Suffering, Accumulation of Suffering, Elimination of Suffering, and the Path that leads away from Suffering. The last part sounds good and understanding that is the really interesting bit.


1) The Truth of Suffering says simply that “Life is suffering”. Now, you need to take that first statement on board as a hard fact. In other words, accept your MS, accept life. Life is all pain, with or without MS. Simple! The demon is real, life's a pain and then you die, in that modern cynical jargon we sometimes use.


2) The Accumulation of Suffering lies in all the cravings of life. As an example, we crave for many things we can no longer do since we had our MS, hence we “suffer” — part of that is in our minds.


3) The Elimination of that Suffering is to get away from those cravings. In other words, to have a better understanding of your own MS and work with it, not against it. This is “it”, it just ain’t going to go away, so live with it, and stop grumbling. This is the real monster, not some fluffy toy!


Which leads away from that suffering.


The 4th truth is quoted as: right view, right intention, right speech, right action, right livelihood, right effort, right mindfulness and right concentration.


A clear and precise way of thinking, which many of us who have learnt to cope with MS will recognise as true. It makes the most of our situation, that being my whole point. The monster, “Old Shuck”, if you happen to chose him, has to be accepted as factual right from the start, rather than as some modern-day myth. He is that token, that need. Get this right and it becomes an excellent way to progress with regard to the difficult and complex issues we all face with our MS.


Trying to convey these thoughts in a clear and simple fashion without confusing the issues was also extremely difficult and I hope you may find them useful.


By the way, when I am struggling, my real mantra is simply to remember that “life is suffering”...

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Just another Warrior...........

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angeltess

Thanks Nick. This helps a lot. I'm going to look into Buddhist philosophy - it's not a thing I know a great deal about, but what I do know just sits right with me. I love your writing.


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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Nick

Well I don't know much about that particular philosophy either! The works of Robert Pirsig are worth reading...... Sometimes things just seem 'right' and when that happens it can be very useful to use them.


Just another Warrior...........

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Sleepy
Scully

Thanks Nick,

 

It's a great piece of writing indeed! Helps doesn't it?

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nick

Anything helps Scully!

 

We need something to cling onto!


Just another Warrior...........

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Dianni

Thanks for this Nick :hearts_circle:

 

It's very deep and profound, yet also very apt. I have to admit that I hold a similar philosophy in that life is indeed harsh and difficult regardless of what illness befalls anyone of us. I don't believe anyone leads a 'charmed life'. Every single human has problems. Mine are just different to theirs, no less real or difficult to deal with, just different. Yes, their are hundreds of thousands of people on the planet who would gladly swap places with me in a heartbeat and truly and rightly think they have got the best deal. It doesn't make my struggle any easier knowing this, it's simply a fact.

I'm one of those very annoying people who tries to see the glass as half full. I don't always succeed, but I always try. If I'm having a bad day whether it's MS, family issues or just the time of the month, I am in the very fortunate position to be able to say 'sod the world'. I know the feeling won't last, that just because my legs, hands, face, brain doesn't work today, doesn't mean it won't work tomorrow, or the day after that. I have learned that just because I have to use the lift to get to bed one night, doesn't mean I can't climb the stairs ever again. This took a LOT of work to realise and to recognise that using it doesn't mean giving in, it's being sensible. I guess this is the Elimination of Suffering part. I've stopped beating myself up for being unable to do something and have stopped craving (OK maybe not all the time lol) what I can't do at any given point.

 

Don't get me wrong, I complain and whinge regularly that I wish I could just have a bath without having to fart about with bath seats and god knows what; that I could get up and downstairs at will; that I could manage my now defunct veg patch; that I could pick the boys up from school or get in the car and go where I want when I want, but for the most part I am pragmatic, I can't and therefore what's the point worrying, just find another way of doing this that or the other or find new things I can do.

 

Having said all this, it's easy for me to sit here, 2 1/2 years post dx, with just about everything in place to make living as easy as possible. I don't have the responsibility of young children or a job. I've a through-floor lift to use when I need to, a shower room, toilet frames, a bed lever, walls I can lean on and everything organised for MY convenience. I also have a host of extremely good friends who will listen, advise and chastise as necessary.

 

If someone had sat me down 3 years back when I first suspected something was amiss and told me that I'd have adjusted and adapted and basically carried on, I would not have believed them. But we do, because we have little choice and because we are humans and it never fails to amaze me just what us humans can and do cope with!

 

Sorry for the 'life according to Di'

 

Hugs

 

Di

 

xxx

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derby42

i read it last night just before i went to sleep and didnt know quite what to say nick. You have an amazing ability, a very special talent and i am thankful to you for sharing it. I bought a book and cd set recently on buddhism and meditation but havent read much yet. I will do now though. Thanks.


derby x

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Nick

Thanks all,

 

Di, I was interested to read 'the world according to Di' It rang a few bells. Do you think it's common for people to want to be outrageous? It was just the 'sod the world!' bit in your words. I've noticed this in myself. My grown up son is still a bit worried by my antic's . I really do feel like having a good old 'anglo saxon' moment but have found that surprise is the best weapon.....(Its all right i'm laughing to myself at the moment) I will suddenly shout out 'PIGS!' for no reason at all (possibly better than shouting something else) I have an irresistible urge to go Russian and hurl wine glasses at the fire place(Sadly I have never had the courage to do this) I detect this 'theme' in a few other posts from different people.

 

Derby,

I'm glad you got something worthwhile out of my writing. I think you do need to be thinking laterally, It's not really a mystical or romantic way of going on, It's more like learning an ability to make the best of all available things. How you do that is interesting. This comes from your inner stamina , something that takes a hell of a bashing in a situation like this. Trying to build that up agin is very difficult and one thing that is very noticeable is the amount of time and effort that all takes. Not rushing things and not panicking about the unknowns is a good start. You can see from Di that it can be done ! That helps as well.


Edited by Nick

Just another Warrior...........

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derby42

thanks nick. By the way i need to ask. . Did you post the other day about having met a lady with ms who was 80? Ive tried to find the post i read but cant find it?


derby x

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Nick

Yes that's right!

When I was first diagnosed the best help I got was from other people with MS. This was not on a forum but by being introduced to a small but active local group of the MS Society. Just getting that far took me some courage !

 

The wonderful support I got in being able to relate to other people who had all gone through it was such that I now help out once a week at our local 'MS Information Point' So I do meet a lot of people this way. Among them is a lady who is in her 80's and while being rather eccentric (She has a good reason to be) She is amazing and enjoys her life to the full! Just her age and attitude is inspirational!


Just another Warrior...........

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derby42

thanks nick ive spent about an hour looking. Its good to hear things like that i might start a topic.


derby x

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