With great sadness, the process of applying for PIP has finally come to an end, as the 'lovely people" at the DWP have decided that I'm entitled to standard rate for the care component, and enhanced rate for mobility.
This is broadly as I was hoping for, so why the sadness, you may ask? Let me explain, just like everyone else who has a chronic illness, I too just sat on my bum with nothing to do or to occupy my mind, and so from the moment the "brown envelope" arrived, I was eager to begin the extremely joyful process of applying for PIP.
After being awarded DLA indefinitely, I was facing a life without any real stress or challenges. My care free life clearly needed something to consentrate on, and so pip finally gave me , the opportunity to stretch myself.
I've heard that some people have found the process quite stressful, but for me, having only multiple health issues including MS, heart problems and a stroke to worry about.,the tiny extra stress caused by the process, and the possibility of losing money or my car, leaving me housebound, was a small price to pay for the excitement and thrill I felt during the phone calls, form filling, evidence collecting, face to face assessment, and waiting eagerly for the decision.
I would like to thank the DWP, Capita, and the Government, for giving me this enthralling experience. I don't know how I'm going to fill my days from now on. I really hope I'm still here in 2022, so that I can go through it all again.
APECTS OF MY HEALTH, DISABILITY, AND LIFE - Some ill conceived rants
There are many challenges when living with chronic illness, including the emotional and mental aspects, which are often ignored, but their impact can be huge for many. Everyone's reaction to illness is personal, this page is mine.
Followers
Friday, 6 October 2017
Thursday, 25 May 2017
IN HOMAGE TO STARDUST
From nowhere to oblivion
And living what's between
With nature's grace allowed to walk
On mysterious paths
To learn from what's been seen
Ignoring that gift far too long
Was blind to its wonder
Content to waste what was given
Watched the clock not the time
Till all pulled asunder
When misfortune threatens to steal
All beauty from that life
Choose the choices to be taken
Care for that selection
When lessening the strife
Countless were all the elements
Gathered in just one place
So unique was that creation
Insult that endowment
When despair shows its face
How difficult is the resolve
when fate has come to call
Must moult away that which impairs
The awe in existence
To even live at all
And living what's between
With nature's grace allowed to walk
On mysterious paths
To learn from what's been seen
Ignoring that gift far too long
Was blind to its wonder
Content to waste what was given
Watched the clock not the time
Till all pulled asunder
When misfortune threatens to steal
All beauty from that life
Choose the choices to be taken
Care for that selection
When lessening the strife
Countless were all the elements
Gathered in just one place
So unique was that creation
Insult that endowment
When despair shows its face
How difficult is the resolve
when fate has come to call
Must moult away that which impairs
The awe in existence
To even live at all
Thursday, 11 May 2017
WHIRLPOOL
I walked an unsuspicious path for many carefree years, with certain expectations for where I was heading, until the Moirai plunged me into a swirling torrent of illness and emotions. Here inside the turbulent churning muddy water, I can no longer see the green of the bank, and knowing that to walk again in the warmth of the sunshine resides only in my memory. Tumbling and rolling without direction, I desperately struggle to swim against the eddies that only pull me down further into the blackened depths of this whirlpool.
I can just make out the muffled sounds of those passing by, and watching my plight from the safety of solid ground. So many different comments: the sympathetic, who pity me; the unsympathetic; who think I'm not trying enough to get out; the religious, who tell me to pray; the grateful, that it's not them; the stupid, who tell me to put on a brave face; the indifferent, who don't give a shit; and of course the hateful, who are hoping I will drown; and a few who actually try and help. While the authorities tell me they will only provide aid, if I can prove that I'm really in difficulty, but most can never understand what it's really like to experience such life changing events.
That feeling of helplessness, knowing that how ever hard you swim, you're only temporarily treading water at best, against an inevitable tide that will eventually engulf you, was for me extremely difficult to cope with. Trying to convince myself that the fight is worth the effort, has never been far from my thoughts, especially when those spirits of fate throw rocks of further misfortune at me, whenever I can hold my head briefly above water, and can take a breath.
Accepting the reality of my situation intellectually was simple, the fact that I will continue to sink is self evident. Emotionally however, has been a very different matter. shaking off my anger, sadness, worries for what may come next, and memories of when my feet strode out solidly over the ground, has proven to be very hard indeed. I have been far too concerned with what I perceive as the unfairness of my situation, instead of the actuality of it. I will always be pissed off with the fates, for what has happened, but that should, and never stop me from doing my very best not to be totally overcome by the enormity of what is,, and what could come.
With every stroke I make becoming ever more difficult, keeping my mind clear so that I can see the best way forward is essential, if I am not to be pulled down increasingly more quickly to the waiting rocks below, and that means that I must fully accept that, dreaming of what has gone, and what could have been, will not pull me ashore. All I can do is to face whatever comes with fortitude by focusing all my efforts intellectually, physically, and emotionally into swimming as hard as I can, grab onto any lifebelt, branch, or rope thrown to me, and use any piece of flotsam and jetsam I find inside this spinning vortex, to help keep myself afloat as long as my mind and body will allow
YESTERDAY'S MAN
There's a man who was born when my health began to worsen, and who exists only in my memory, intent on constantly reminding me of what has gone, and whether he is a friend or a foe is becoming more and more difficult to tell. I certainly feel comfortable whenever I visit this man of my yesteryears, because he takes me back to places where I felt safe and worry free.
There is of cause nothing wrong with revisiting the past, so long as it is not used as a comfort blanket to shield me from the present realities of my life, and that's the problem with this old friend of mine. It can be far too easy for me to hide away, lost in the " good old days", instead of facing that reality, which often seem too difficult to cope with. Trying to find solace in what no longer exists, shows me nothing new, and does not add anything to my understanding.
Just like anyone who feels threatened, this past version of myself, has done his best to keep himself alive, by showing me just how happy he used to be, and how bad everything is for me right now, and he has been the architect of much of my sense of loss, sadness, and anger. This is of cause a complete false impression, the past was never actually as good as he claimed it was, and the present not nearly as bad as I often think.
I must now re examine the relationship I have with this old friend. I can not, nor want to completely let him go, but I have to choose what role I want him to play in my future. Do I want him to continue to influence my thoughts, emotions, and actions, or do I want him to be simply a fond memory?
Saturday, 15 April 2017
STRING THEORY
Just
like a trippy shadow play, warped visions rushed to my mind, of a
past that never really existed, and of times ahead, that may, or may
never actually happen. Coloured lies designed by a coloured mind, to
deliberately confuse an already altered truth. What were fond
recognitions and expectations, became weapons cutting at the heart of
my present and future with an overexaggerated sense of loss.
Desperately
I tried, without success, to see the author of this emotional
creation, hidden behind a wall of sadness, disappointment, and anger.
The fear of what I might find beyond, keeping me in a constant state
of impotence, until in one single stroke, I saw clearly through to
the marionette of illness I had become, a character in a puppet play,
reading from a script I had no control over, led by the strings of a
disease, I had allowed to become heavy chains holding me back.
I
cannot server the ties that bind me to illness, but I must recognise,
and believe, that I am the master not the slave, l must grab onto and
firmly hold those strings in both hands, if I am to have any control
over how and where they may pull me.
I
will no longer allow my mind to use the frustration I feel about the
limitations of the props, or where the plot may be heading, to stop
me from taking my part in the drama, as fully as I am able.
Wednesday, 11 January 2017
DIVORCE?
MS, you and I have been together for many years now, but lately our relationship has become very strained and increasingly difficult. I know my anger towards you hasn't helped the situation, but you have to understand that my anger is purely a natural reaction to the terrible things you have done to me.
When we first got together we seemed to get on OK, but it wasn't long before you started to be controlling. It's now gotten so bad, that I can hardly make a move without your say so.
You won't let me work, taking away my financial independence, or let me go outside on my own, cutting me off from my family and friends. I'm not allowed to cook anymore or clean the house, you are with me when I shower, and use the toilet. You even influence when I go bed, and get up. As for the injuries caused by your physical attacks, these have been debilitating, and there are no signs that they will stop, in fact I believe that they will, not only continue, but will only get worse.
A marriage is supposed to be based on give and take, but all I see in this partnership, is that you have taken so much from me, but given nothing. All you've done is cause me pain, and taken away any hope I had in the future, and in living a normal life. I want the life I had before I knew you back. I want to feel once again the freedom I had before you stifled my independent spirit. In short, I would really like a divorce.
If only it were that easy? To employ some supernatural lawyer, or arbiter who could divorce us from life's problems, but like it or not there isn't. Those of us who are living with an incurable illness, are paired with it , "for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part". All we can do is learn to accept it, and find ways how we can best live with it.
When we first got together we seemed to get on OK, but it wasn't long before you started to be controlling. It's now gotten so bad, that I can hardly make a move without your say so.
You won't let me work, taking away my financial independence, or let me go outside on my own, cutting me off from my family and friends. I'm not allowed to cook anymore or clean the house, you are with me when I shower, and use the toilet. You even influence when I go bed, and get up. As for the injuries caused by your physical attacks, these have been debilitating, and there are no signs that they will stop, in fact I believe that they will, not only continue, but will only get worse.
A marriage is supposed to be based on give and take, but all I see in this partnership, is that you have taken so much from me, but given nothing. All you've done is cause me pain, and taken away any hope I had in the future, and in living a normal life. I want the life I had before I knew you back. I want to feel once again the freedom I had before you stifled my independent spirit. In short, I would really like a divorce.
If only it were that easy? To employ some supernatural lawyer, or arbiter who could divorce us from life's problems, but like it or not there isn't. Those of us who are living with an incurable illness, are paired with it , "for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part". All we can do is learn to accept it, and find ways how we can best live with it.
Sunday, 4 December 2016
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 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.
Friday, 2 December 2016
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?
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
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
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
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
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
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
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.
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.
Thursday, 1 December 2016
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.
Monday, 28 November 2016
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).
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).
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