JUNK PILE BANGER

I have been spending far too much time in the past, concentrating on that junk pile banger of a car, that I call my body. With its dangerous breaks, faulty electronics, and threadbare tyres. I've been obsessed with how damaged and worn out it is, and how long I can keep it from the scrap yard.

What I have completely forgotten, is this is merely the vehicle in which I travel. My hands are firmly on the steering wheel, and my feet are on the peddles, and for as long I still continue to control the direction my journey, I will always steer true, to a course of my own determination.

CREATURE

My MS creature, just happens to be

A two headed brute, that’s living with me

With two heads in sync, they work as a pair

Acting together, the task they do share

One so physical, attacks with a bite

The other sneaky, it stays out of sight

One is quite open, it’s showing its face

The other stays veiled, less easy to trace

Whilst both do injure, with wounds that will scar

The hurt’s not the same, they’re not on a par

One always bites deep, but still have the hope

With help and support, I’ll learn how to cope

The other is sly, and somewhat less kind

Rabid and drooling, it snarls at my mind

My beast of burden, that no one can kill

I can live with it, for I have the will

DARK SPIRIT

I’m cast and confined in the shadow of a ghost

A phantom formed from a former life

Inside that gloom of sadness and anger

What was bright now has been darkened

What was solid is formless and fluid

What was straight is twisted and tangled

What’s gone what is and what’s to come

All contained in an obscure reflection

Everything I see hear think or do

Is coloured in a shade of what’s been stolen

FALLING

Falling down comes as an added extra with MS. It's completely free of charge, no strings attached. To get the most out of this free gift, you must first learn how to use it properly. The art of falling down is not straight forward, and will take many years to master, but with plenty of practice it is possible to become an expert. Then you can enjoy this gift to the fullest.

Learning the art of the fall will not come easy, and you will pick up many injuries along the way. There are very many household objects that are determined to interfere with your enjoyment of any decent, by deliberately placing themselves directly in your path. Learning how and why they do this will be invaluable in order to avoid scrapes, bruises, cuts, broken bones etc. Planning your route to the floor is essential in avoiding these viscous objects, but always be aware that a table, chair, wall or other such item, may suddenly appear out of nowhere in the middle of your planned journey. Penn & Teller are amateurs, compared to a coffee table that wants to surprise you. When trying to avoid these, don't wave your arms about, like a PCP fueled windmill. You have much more control with a little bend here, or a shift of body weight there.

Another problem you will encounter, is how to cope with something that may be in your hands, walking sticks, cups, plates etc. These are just as sneaky as everything else in your home, and are experts at placing themselves right underneath you unless they are dealt with correctly. Just dropping or tossing them, like you’re holding something the cat threw up, is a definite no no. Doing that will only guarantee that they end up in a place where they can inflict the maximum damage. I've found that the best solution, is to throw them as far away from you as possible. Non-breakable items are no problem, crockery, glasses etc. are tricky, they will do their utmost to make sure they break into as many pieces as physics will allow, and rain them down over the widest possible area. So try to aim for somewhere soft, but be aware that if they can bounce, they will bounce, and trampoline straight back towards you.

 Likewise, hot food and liquids will attempt to burn you if they possibly can, hands face and groin are popular regions for such attacks, so be careful. Never worry about any mess you might make. Tidying up after is a price you will have to pay for the privilege of falling, and is preferable to a trip to A&E.

Now that you are aware of some of the pitfalls of using this wonderful free gift, it's time for your first fall. Quite a lot of pre planning will be required to ensure that your first time will be memorable. You don't want it to be just a little trip or small tumble. Steps, wet floors, and even the ends of carpets, are all highly recommended to ensure a real good crash. There are of course numerous ways to use this gift, other than the obvious. I myself am quite fond of the trailing foot, which catches very nicely on all types of ground, and never fails to send me plummeting spectacularly to the floor. With time you will find more and more opportunities to fall and will develop your own favorites.

 

A few words of warning:-

Overuse of this free gift, can seriously ruin all the fun. Whenever I find myself arse over tit these days, my response isn’t laughter, but an angry “f*** not again”.

This free gift is part of a bundle. There’s no box to uncheck marked do not download, and you can’t do a David Cameron and renegotiate the terms or opt out of the bits you don’t like. There’s no referendum, no free vote, no going back.

I NEED A REBOOT

If I were a PC, I could press ctr, alt and del and close any processes that are causing me problems, or run a system restore, and go back to a point when I worked properly. I could even reset myself and start again with a new operating system.

Sadly, I'm a mere human and can't. This is very unfortunate because, my programs will not load properly, my drivers may have been corrupted, and my system will not respond correctly to commands. I could have picked up a worm, or been infected with malware.

I must confess that I feel a little aggrieved by this glaring flaw in the design of us human beings. I'm not one of those who think that Bill Gates is some kind of god, far from it, but if he had been in charge of creating Adam and Eve, some kind of facility for us to return back to defaults, would have been included. However there may have been conditions applied to the use of these, and god may have had to agree that no other tools be used even if they are better, or cheaper.

I can't but feel that if God had given himself more than six days to create everything in the universe, and only one day to create us. Then I think he might have come up with a better design. Let's face it we have many inherent faults. Microsoft of course wouldn't have been able to come up with anything in a day. Though some of their creations, feel like they were. Windows Media Player, Internet Explorer, Windows 8 and 8.1 for example.

Take how we are powered for instance. Out of the many different power sources, this omnipotent deity's choice was to provide power via the ingestion of dead animals and plants. This is not only inefficient, but also, for me morally questionable, for it means that to live I must kill.

To me the biggest error in our design is how vulnerable our hardware and software is to damage. It's no wonder that we do not come with a manufacturer's guarantee, otherwise the claims department in paradise would be overwhelmed.

Someone suggested that I should read the manual. So I picked up the Bible to find that this handbook had two sections entitled “The Old Testament” and “The New Testament”. Followed by an appendix with the heading “Revelations” I thought “Now I get it ”, The Old Testament manual for the beta version of us, New Testament for the full version, and a “How To” appendix.

After reading these I was very disappointed. It started fine with a brief description of how half us were made of clay and the other half made from a rib taken from the first half. Similar to how every new version of Windows is built on the bones of the previous one, and a warning to keep away from anything Apple related. The rest of this document read more like an idea for a video game than a technical manual. Full of battles, death and destruction, a giant killing, a worldwide flood, a wizard performing magic tricks, culminating in the destruction of everything.

I thought I should speak to an expert in religious technology. Surely he'd know how our component parts worked, and how to contact the manufacturer. He told me he specialized in a hidden program called The Soul. Apparently it's separate from our operating system, but without it we would be unable to boot up. I assumed it was similar to the bios.

He told me he couldn't help me, but referred me to a wi fi communication application called Prayer. Where we can state our concerns and problems. It's different to Cortana and Ask Google. Instead of giving you answers directly, God constantly monitors this app, and if certain secret criteria is met, he authorises an automatic repair. This process is know as A Miracle. So gave this a try, but unfortunately either I didn't establish a connection, or I didn't match the criteria because nothing happened.

Having failed to contact the creator, it was time for a different approach. So I took my problem to the local medical geek, who referred me to an engineer who specialised in discovering the source of problems in human machines. So I went to his workshop where he used various pieces of equipment to study me closely inside and out, and test all my constituent parts. Then finally I had an answer for my failure to function correctly as a human device.

The problem lies with the manufacture of my motherboard. Someone in the quality control department in heaven dropped a clanger, allowing faulty main boards be used when building us. This has failed to function properly, seriously affecting the flow of information to and from my processor. God may not play dice with the universe, as Einstein believed, but he does when it comes to our construction. Many of us will prematurely fail while others will continue to work perfectly until their components wear out.

If I were really a PC I would replace any components that are faulty. Unfortunately I can't because even the brightest of boffins have yet to discover how to repair or replace a broken human baseboard .

So this piece of technology that I call "Me" will continue to have problems, and under perform. There will be times when I want to throw it through the nearest window out of frustration. However my cpu and ram while a little slower, remain sound. There are a few missing files on my hard disk, but most of the data I've gathered remains uncorrupted in storage and accessible.

I will have a struggle to run my software, and I may have to put myself in sleep mode more often, but I'm not quite ready to power down this old desktop and sign out permanently.

MUSIC IN MIND

Alone on my bed with cans on my head

Every change of  track I'm journeying back

Within those melodies so many memories

Before my body broke and betrayed me

It's fun for a while and I even smile

But fading too fast this ghost from a past

That’s Amorphous and ancient and long dead.

With eyes opened wide the cans put aside

Sitting I’m silent just for a moment

I'm searching to see that man who was me

But all I can find when looking behind

Disease came to stay and I went away

And Left in that space a man with no face

A stranger inside who’s frequently lied

The end of the night and cans out of sight

Time to look forward and to move onward

Through all of that pain new strength I did gain

No longer afraid of any path laid

I'll look at her straight that mistress of fate

On her shifting sand I'll make my stand

Fearless I'll fight with all of my might

STOWAWAY WITH ME

My MS stowaway's here to stay
I know he will never go away
If I could ask him just one question
I would have a simply suggestion
Please can you give me just one whole day?

Just one whole day without any pain
And be free to move fully again
A small break from the constant struggle
And with the never ending battle
With the simplest of tasks to attain 

Twenty four hours when I cannot fall
Or to crash headlong into a wall
With a body that could stand up straight
Not broken or in such a poor state
I would stride out quite proudly and tall

I’d like a chance to sit and unwind
One tiny moment away from my mind
The thoughts in my head I could then clear
Away from worry anger and fear
Maybe a little peace I could find

I’m not asking for time to stand still
When descending the slope of the hill
I can’t stop what the future will bring
I'm only asking one simple thing
Just a short pause from feeling so ill

On that journey there'll be no delay
And where it takes me I have no say
With my stowaway deep down inside
Always together we’ll take that ride
And never to stop along the way

Moving forward I’ll never be free
I cannot separate him from me
With every new day worse than the last
And feeling well confined to the past
I have no choice that’s how it must be

THE GAME

Once upon a time there was a man, playing a game of Snakes and Ladders. He was perfectly content with his place on the board, somewhere just below half way, and throwing twos and threes with the occasional four of the dice, meant he made slow, but steady progress. . He always played with great enthusiasm, even though he knew it was very unlikely that he would ever win.

He played the game for many years, hoping that one day he might throw a six, but unknown to him, a horrid witch called Ms. Fortune had been watching him closely, waiting to pounce. Then one day, when the man wasn't looking, she made her move, and full of ill will, she played her sick joke, and put a spell him. Taking away his ability to throw the dice properly, making it impossible for him to ever throw a six, and that whenever he landed on a ladder, it would be a short one, but when it was a snake, it would be a long one.

She sat back laughing, and watched as he desperately struggled to make any progress on the board. Any move forward was quickly followed by a steep slide down a slippery snake. He began to fear every throw of the dice, wondering where he would end up. 

 

The man knew that there was something seriously wrong. It was time for him to visit the wizard, who specialized in finding the reasons why players couldn't play the game correctly. The wizard checked the man over from tip to toe and using his magic wand he even looked inside him.

After a little while, the wizard sat the man down, and gave him the bad news. "The horrid witch Ms. Fortune has put a spell on you", he told him, and then added, “I’m sorry, but this particular spell is unbreakable. From now on you'll have to play the game spellbound ".

The man walked slowly away with his head in his hands. Why had Ms. Fortune played such a cruel trick on him? He thought. Especially when he knew that some of the other players threw sixes every few goes, and only ever hit tiny snakes, but always lengthy ladders.

He became very frustrated and angry with the game. All he could see was a slow continuous slide down to the bottom of the board. In his darker moments, he couldn't see any purpose to the game at all, and sometimes even wished that he had never started playing.

One day, when he was waiting to take his turn, and feeling quite depressed, the man began to remember why he was playing the game. It wasn't because he wanted to win; he had never cared about that. The pleasure was all in the taking part. OK, he thought. I maybe spellbound, and I may hit more long snakes and short ladders, and I may go backwards on a lot of my turns, but while I'm still in the game I can still have lots of fun.

He picked up the dice and unafraid shook it with a new vigor. Wherever it led him, he would play again from there, determined to fully appreciate and enjoy each and every move until the game finally ended.

TO BE FOE

When asking awkward questions.
Enigmas were all I found.  
As a ghost of the future.
Sought my destiny to capture.
To keep firmly tied and bound.          

Confined by that restriction.
All attempts at freedom still.
Was tricked by the delusion.
Giving me the illusion.
Any body has free will.

From this chain there's no escape.
What prospects that can negate.
That which time cannot protect.
When all of the links connect.
And tighten against my fate.

Some have suggested karma.
For this groan of nature’s cry.
The cosmos kept in balance.
By seizing my quintessence.
But never shows me why.

Priests spoke of god's plans for me.
But then which god of which creed?  
So faith is no solution.
Just adds to my confusion.
It's in reason I will heed.

The unknown always guideless.
This fact I have accepted.
Lightening that dark shadow.
And changing my tomorrow.
From all I had expected.

Cognition has been altered.
By a misfortune's aside.
I've taken myself apart.
Which gave me a whole new start.
Revealing the truth inside.

Angered by disappointment.
Which was colouring my view.
Until I opened my mind.
And being no longer blind.
Able to see things anew.

When asking awkward questions.
What was missing has been found.
And that ghost of the future.
I have sought and did capture.
To keep firmly tied and bound.  

ONE MAN'S MEAT

For those who sit at the table of good health enjoying the banquet, believing their salad days will never end. Few will consider, others not care about, some even make fun of, but none will understand those who sit for less palatable fare. So dine well my friends, and savour the sweet fruits and succulent tastes, because all too quickly can they turn sour and difficult to digest.

Dear Mr. Karma

Dear Mr. Karma,

In your previous letter, you stated that nothing occurs by chance, and everything that has happened to me is deserved, and the reason for my present health problems was to compensate the universe for wrongs I committed previously. You went on to state that these wrongs could have been done earlier in this lifetime, or even in previous lifetimes, but flatly refused to say exactly when, or what I actually did to warrant such harsh recompense.

I have done some selfish things in my life, but I believe no more than other people, and I've always tried never to act out of malice, or to deliberately hurt anyone. So I'm at a loss, in this life at least, to explain what I've done that's so terrible to merit the punishment that you say I deserve. As for previous lifetimes, I doubt that I've had any, and if I have don't remember them.

So I have to ask Mr. Karma, what sort of justice system is it you are running, when the accused is not told what they're accused of, and punishment handed out, leaving the perpetrator, (me) to guess what crime he's committed? How can anyone learn any lessons, or be deterred from future wrongdoing, in such a system?

With the greatest respect to you and your followers, anything that encourages people to be better human beings is to be welcomed, but it's the twenty first century, don't you think it's time to abandon this superstitious mystical nonsense, and accept that some things just happen for absolutely no reason with no one to blame, especially not those it affects.

Dear Mr. God

Dear Mr. God,

Firstly, I hope you are not offended by me addressing you as Mr. I was taught in Sunday School, that you are male. If this is incorrect, then please accept my apologies.

The body that you supplied me with, appears to be faulty. I have been assured by medical experts, after rigorous testing of the body, that there is an inherent flaw with its basic manufacture, and is not due to normal wear and tear.

I am aware that you never supply a guarantee or warranty with any of your products, but I think that you have a legal and moral responsibility, to ensure that all of your products should always meet the normal minimum standards expected for such products, and this you have clearly failed to do.

You have seven days from the date of this letter, to either repair the fault, or to contact me, with your proposals for how you intend to rectify the fault

Please do not ignore this request, as this may result in in legal proceedings being taken against you.

Yours sincerely,

A very dissatisfied customer.

WHO AM I

I’m not defined by my disability, but I am by my reaction to it. In general I believe that I’ve coped quite well with the physical, and many of the emotional and mental aspects of my illness. With some difficulty and with lots help, I’ve learned to adapt to the ever changing symptoms as they developed.

From the day that I was diagnosed with having MS, I’ve spoken with my health professionals and read as much as I could on the subject, and so was prepared for many of the subsequent problems that arose, though being prepared for something, and experiencing it, are two very different things.

What I didn’t expect, and came as a complete bombshell, was how drastically my personality would change. Before my diagnosis, I had an easy going very positive outlook, I saw silver linings everywhere, and my glass was most definitely half full. Now every cloud is a supercell thunderstorm in the making, my glass is emptying rapidly, and the little that’s left inside is very bitter to the taste. I have become a mirror image of myself, from a person whose friends would describe as, wearing rose coloured glasses, to one who is blinkered to anything positive. Every new symptom, increase in pain, fatigue, and even financial worries, have all had an effect on me. By far the biggest effect on my personality however, is that MS is a progressive disease, meaning my future will be a continuing downward slope, over which I have little or no control. I can't help but feel that an important part of me has been stolen away, like a character from The Body Snatchers, taken over by an alien while I slept. This change has not only been dramatic, but happened very quickly when taken in the context of the rest of my adult life.

That inability to influence the outcome of a major part of my life, has reminded me of something I’ve always been aware of, but failed to fully appreciate, that ultimately everyone is subject to any number of outside forces that could fundamentally affect the course of their lives. My former belief that the world is basically a hopeful place, if not wrong, was naive. For many people the world is a very difficult place, and no amount of positive, or for that matter, negative thinking will change that.

I hope none of this reads like a self-indulgent rant. I know that I can be prone to that on occasion, or that I think everything is doom and gloom, far from it. There is much in my life that’s very good right now, and I still look forward to many things. It’s meant to be an honest attempt to put into words some of the debates I’ve been having with myself lately, and what, if anything I can do about it.

Even if I could jump into the TARDIS and go back in time, it would not change any of the facts. I would still have MS, and still be facing an unsure future. If I want that future to be as comfortable as I can make it, then I must decide what my priorities are. I think it is time for me to see myself and the world as they are, and not what I would like them to be. If that means accepting that I am a very different man to the one that walked into that doctor's office before my diagnosis then so be it. I should not see that as a weakness, but as an opportunity to re-energize my efforts in those areas of my life where I can still make a difference. Worrying about whether I'm an optimist or pessimist, and things I cannot change, is a waste of time and energy, that would be better spent on what is really important.

And so, let me introduce myself. I’m Steve, a grumpy old man who has MS.

I'm off now, to listen to, The Dark Side of The Moon, but this time without any sadness or sense of loss, just an appreciation of its brilliance, and if that goes well, I might even try some Leonard Cohen, or Mazzy Star. (I'm feeling brave).