Month: April 2019

WHERE’S IT ALL GONE?

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Black
Fear
Walls close in on me
No way out
Shivering
Nausea
Screams rising
“Where’s it all gone?
Where’s it all gone?”
Deep guttural sobs
That can do no good
Escape from my mouth
But there Is no escape for me
Blocked
Held
Trapped
It’s gone
Nothing can get it back
Nothing assuage
It’s gone
My life
Another bit stripped away
Today
Fear chokes me

Chokes

Chokes

 

Chokes

 

Me

#FOWC. WAGON

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FOWC with Fandango — Wagon

They used to be a lot bigfer than they are now.  Like everything else, they have shrunk.  WAGON wheels!

Do you remember those huge circles of biscuit covered in chocolate, with something else in the middle – was it marshmallow?  So big you could hardly get through them.  I thought they’d stopped making them because even when I had one in my hand I didn’t realise it was one!

It’s like everything isn’t it!  SHRUNK!  Except for me, that is!  I’ve just grown larger – probably from eating too many wagon wheels that I did not know WERE wagon wheels.

Does anyone else remember them?

Why I’m boycotting the Cancer Survivor title

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Remission Life

noun: survivor; ‘a person who survives, especially a person remaining alive after an event in which others have died’

Yup, that’s me. So why am I boycotting the ‘cancer survivor’ title?

It comes down to two problems.

1 – It insinuates that other people weren’t strong enough to survive, as if it was a choice or a sign of weakness. We all know this isn’t true, but I feel like the continued use of this title can unintentionally offend bereaved individuals.

2 – It suggests the battle is over. You are a cancer survivor now, so it’s time to live everyday like it’s your last and become an even better, brighter version of yourself. Stress.

I want to expand on the latter problem. This affects me everyday. It affects my decisions, my self-esteem, and my mood. And it has for over a decade. When my treatment ended, there was…

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TO BE BLIND OR NOT TO BE BLIND

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I read a really interesting article today in the Guardian that was talking about disability. The person writing was disabled – blind, in fact. He had been approached in the street many times by people who wanted to pray for him to receive his sight back. He interviewed other people who had had the same experience, and all of them had found it disconcerting because they accepted who they were, and did not feel they needed healing.

There was much more in the article, but it set me thinking a LOT.

I understood EXACTLY where those people who were disabled were coming from. I too feel the same – that I would not be who I am now, were I to be healed physically.

Strangely, , before ever reading the article, I had thought how I might feel were my sight to be restored, and I was shocked to realise that the prospect frightened me. I am not sure I could adjust now. I feel that if that were to happen, I would lose a huge part of myself. And yet, that has also been the biggest grief of my life – going blind. The being in a wheelchair I could cope with, but the being blind bit was always the one that caused the most grief. And the grief was, and still is, DEEP.

At the beginning, when I knew I was going blind, in a strange way, I felt at peace. I felt I would cope. I felt it as a challenge to be met, and in a way felt excited about the challenge. Not the blindness itself, but the challenge. Maybe sometimes I felt afraid. I guess that is a normal reaction. But in general I was kind of okay with it.

I remember distinctly one day, thinking to myself,

“Am I alright NOW, in this PRESENT MOMENT?”

And the answer was that YES, I WAS okay. I could cope. I was, to all intents and purposes, happy. I was at peace. I knew that if I continued to live in the present moment, I would be okay. I knew that my sight was going to go even more, in time, but what was the point of worrying? I would deal with each moment as it came.

The problem was that other people did not feel that way, and it took my peace away. There was a great pressure on me to find eye surgeons to try and get my sight back. The idea was that you MUST try. Go to the ends of the earth to get your sight back. It was IMPORTANT.

I felt a terrible failure, and a great deal of guilt when I did not do that. I did try once, but it all went wrong. But that is another story. However, the guilt will not go. It is thought, within society, that you should never give up, but always TRY to find medical help, even when you have been told that it is not possible. I have been told to try different hospitals. Try different surgeons. But I can’t do it. I need to relax with how I am. With what I now am.

My peace has gone, since everyone has tried to persuade me that I need to try to get my eyesight back. But it went wrong once, and I do not want to go through that again.

I am not saying that life is easy for me. Far from it. And I have the added problem of being in a wheelchair, having no feeling in my hands, feet and legs, and various other problems too. So sometimes life DOES get me down. The one thing that blind people need is a sense of touch, so that they can FEEL their way, or FEEL to find things. Additionally, it is very hard on my husband who is also wheelchair bound. And so, I feel guilty for HIM. I know that HE wanted me to keep trying. That is understandable.

And so I have an issue. If other people are not at peace with it, can I truly be at peace?

I grapple with this all of the time, and yes, I WORRY about the future. I wish, with all my heart, that I could go back to that time when I lived in the present moment, and felt peace in the present moment.

It is a dilemma. These days, there has to be a “fix” for everything. And if you don’t get fixed you are either making a victim of yourself, or at least, letting the side down in SOME way.

Yes, there IS grief involved in going blind. Saying “Goodbye” to things. But the pressure to be whole again, to fix it, to do something about it, is so great. For me, it is a pressure I cannot live with.

DAFFODILS

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I saw you nodding at me
Your head dancing in the gentle breeze
Saying “Yes” to my presence
Inviting me
Welcoming me
Inviting me to join your dance
My spirit rejoiced
At your “Yes”
For so many times I have been told “No”
So many times rejected
As if I was leprous
So many times labelled
Defined
By those who know nothing
Who do not walk in my shoes
Doors closed in my face
Blaming
Shaming
For being blind
For being wheelchair bound
But here you are
Nodding and saying “Yes”
In your glorious yellow
White accessories
Oh how pretty you look
How gentle your dance
And you invite me, ME
To join you
Tears well in my eyes
Tears of joy
I am WANTED
And hesitantly
With wobbly legs
And unsure sight
I join you in your dance
Together we dance and sing for joy

A REPOST FOR RAJINI: They Say She’s Mad You Know

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THIS IS ABOUT MY VERY BEST FRIEND WHEN WE LIVED IN A DIFFERENT COUNTY

I saw her last week, my friend,
Every time she stuns me,
They have called her mad you know.

She sees with eyes that others do not have,
Her insight knows no bounds,
Her intellect so keen,
She always has an answer for the wise guys.

I saw her today, my friend,
Still, she stuns me,
Still she sees with eyes that others do not have,
Still her insight knows no bounds,
Still her intellect is keen
And still she has an answer for the wise guys.

But today, she dies,
Today she is mad with pure clarity,
Such that her mind cannot bear.

I raise my glass to my friend,
The one I thought I knew,
And toast her brilliance
So bright as to scorch
And sear her very soul.

I am the one who is mad,
She the pure prophet.

She’s gone now, my friend,
You know, the one who is mad,
They took her away one night,
Kicking,
Screaming,
Biting,
Fingers flicking light switch,
On, Off, On, Off,
Signalling in code,
“Help me, Help me, Help me”.

No one heard, because of course,
She’s mad.
No one heard the sacred
Screaming out from the deep,
Roaring,
Wailing,
Cursing.
Because of course she sees,
With eyes that are her own,
The truth that others cannot bear,
And neither maybe, can she.

She’ll be back soon,
Quieter,
Sedated,
Normalised,
Will she still see, with eyes that are her own,
The truth that others cannot see,
That drove her to her fate?

Beside me now,
A CD,
That once she gave to me,
That tells me of her soul.
I finger it in awe,
Tears fall slowly,
I caress the truth,
Her clarity,
And cannot bear the pain
Of my love,
Or hers.

RESPONSE

I said “Goodbye” to my friend,
I was moving on,
We hugged and kissed,
Her eyes were bright,
Her love intact,
She was quite “normal” now,
But behind the “normality”
I saw Hope shining,
The Hope that looked like madness.

NOTHING BTWEEN

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WRITTEN WHILST LOOKING OUT AT THE SUNSET OVER THE EStUARY

 

There is nothing between us now
I am at the edge
Looking in
And suddenly
I am there, part of the picture
Alone
But All One
As the sunset enters my soul
No longer a picture
But part of me
I part of it
And in this moment
I know
Eternity

BE YOURSELF

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It is a common misconception that when cancer patients receive the news that they are in remission, they will be all happy, and indeed, ecstatic. Whilst this is true, there is also another side. It is very common for people recovering from cancer to feel very depressed, fearful, and disorientated. There is a kind of insecurity, and a restlessness that makes it difficult for people to relax, and start to enjoy life again.

I cannot say that I felt like that. At first, I was ecstatic – just SO relieved not to have to go through any more chemo. No more of those awful days following a chemo session. No more of that dreadful fear approaching yet another chemo session. The effects are cumulative, and get worse the nearer to the end you get. The last few sessions are almost unbearable because you are imagining life when you have finished, but you are not there yet, and still have some sessions to go. You become impatient, and quite distressed and depressed. Plus, you do not know what the outcome will be.

So, when I went into remission, I was indeed ecstatic. I am not good with hospitals, and my particular hospital was bad, being at the bottom of the list for hospital efficiency in our country. Even now, if I had to deal with hospitals again, I would not fare very well.

As I say, I was ecstatic. But as time wore on, I started experiencing things that were most unwelcome. Feelings of being trapped. Panic. Anxiety. Nightmares about being trapped. A feeling of unreality. A going inside myself at times.

I have discovered that this can be the new “normal” for cancer survivors.

In my own case, of course, I had other things to contend with. Going blind, being permanently in a wheelchair. Pain. But, just to be a cancer survivor without all those added complications can be bad enough.

I have, sadly, found that not many people understand this. You are expected to be grateful that you survived, and that you are still alive – and therefore happy all of the time. You are expected to count your blessings. You are expected to smile all the time. If you do not always act in this way, you become almost demonised in some quarters. I have experienced this for myself. It is a very hard road to travel. You cannot show your true feelings.

I recently read that many cancer survivors suffer from a form of PTSD. It figures! Yet not many people make allowances for this. Yes, you learn strategies to cope with it. But sometimes you need a little bit of understanding. Mostly, you do not get it.

I am writing this because it is something that needs recognising in cancer survivors.

For myself, I think I am a bit schizophrenic! I have two sides to me. One is the ecstatically happy, exuberant one, and the other is the fearful, depressed, sometimes angry one.n the black one. I guess that this is normal for many, too.

I am a Realist. Always have been, and always will be. Mi am totally honest about my feelings because I hate dishonesty and hate trying to delude myself. I have to face thngs as they really are p. But then, I also have to try to remain optimistic, and find the light in the midst of it all. I walk a tightrope.

I want to say that it is ok to feel bad sometimes and to express that, when you have had cancer, or anything else in your life for that matter.  You are NOT failing, or “bad” for that, though some might try to make you feel that way.  It is okay.  It really IS.  It is natural.  It is okay to feel happy and joyful.  It is okay to feel a d be like a child, feeling a child’s delught and innocence. It just IS okay.

We can, all of us, only ever be as we are. There should never be any burden on any of us to be as people want us tobe. It is a heavy weight to carry, and no one should have to carry that weight.

We all need to remember – we can only be ourselves, and it is all we must aim for in life. That is the way to true and lasting peace.

Written for MAD ABOUT METAPHORS Challenge from Sarah

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https://wordpress.com/read/feeds/19271780/posts/2257445048

 

We never heard the weather forecast. Well, we wouldn’t have been likely to really. But it might have been beneficial if we had! We had gone camping on a motor bike! To a camp site high up in Yorkshire, not far from the coast.

It hit us at about one o)clock in the mirning. The worst gale we had ever had to contend with in all our years of camping! It was terrifying! We spent most of the night trying To hold down the bright orange tent that we were so proud of. My husband was holding one side whilst I was holding the other. The wind kept ripping the tent pegs out of the ground!

The worst bit came when I needed to wee! How do you wee whilst holding onto a tent? Well, there ARE ways. I managed it, but all the time, my husband was having trouble holding onto the tent.

Never had we been so glad when morning came and the wind abated as we were thay night. If only we had heard the weather forecast telling us to “Batten down the hatches.”

HEALING STREAMS

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Sheep graze in pastures green where water flows
The Valley of the Shadow cannot harm
A Banquet waits for me where lush grass grows

Here in this place I leave my earthly woes
Held firmly as I walk by Love’s right arm
Sheep graze in pastures green where water flows

Goodness and mercy now my poor heart knows
My head anointed now with heavenly balm
A Banquet waits for me where lush grass grows

No longer need I fear my earthly foes
No arrows need my spirit now alarm
Sheep graze in pastures green where water flows

I need not fear the dark the sky now glows
The healing waters now my spirit calm
Sheep graze in pastures green where water flows
A Banquet waits for me where lush grass grows

TREAD SOFTLY

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THERE IS ALWAYS SOME light to be found SOMEWHERE even if it is only glimmer

Tread softly as you go into the night,
For many before have journeyed on this road,
Soon will come the dawning of the light.

Do not let your dark thoughts cloud your sight,
Raging long while carrying your load,
Tread softly as you go into the night.

Take heart from those of old who in the fight,
Preserved within the promise of a heavenly abode,
Soon will come the dawning of the light.

The light cannot be quenched by grief’s great might,
Sing, for joy on you will be bestowed,
Tread softly as you go into the night.

Speak soft and gentle words when at the height
Of darkest struggles, do not goad,
Soon will come the dawning of the light.

Let not your heart be troubled, glimpse the bright
Joys ahead, sweet heavenly food,
Tread softly as you go into the night,
Soon will come the dawning of the light.

It’s rant time….

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A Dad trying to cope with the loss of his Partner and becoming a single parent.

I’ve talked about walks quite a bit recently. Hopefully I won’t stray too much onto old ground on this rant. Apologies it is a rant.

One of the benefits of a walk in nature is that it helps you forget about our world, my country.

Deep breathing and it begins…..

We are so lucky to be sitting on this magical rock, in this special little place in the Universe. We live on a planet which is beautiful and can provide for all of us (if we let it).

I live in a stunning county in a once lovely and diverse country.

I used to love my country but I deeply hate what it has become.

A place where someone thinks it’s ok to string dead Jackdaws on the gates to a TV presenters house because he makes a stand for animals in our country.

A place where one of our…

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PLEASE

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In our town we used to have some lovely green areas where we could go and relax and find peace from the busyness of lives and the crowds, the funes from cars, etc.  But now, they are making them all into buikding sites.  No place to go any more.  😒

Tell me
When will they stop
Taking away our green
Making Construction Sites
Out of rarest pearls of beauty
In towns
That gasp
For a purer air to breathe in
Please make it all stop now
Leave us our space
To breathe

HENRy HURTS

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Well, I did go in the new car again yesterday. Ni thought that I needed to know for sure that it was the car causing,pain.  It did hurt whilst I was in it, and now, once again I am awake in pain at 2,30 in the morning in great didtress.

i feel like a freak.  Whenever I get pain I tend to think it is kind of my own fault – well what I mean is that it is due to something I did that I should not have done.  That is just my nature.  Yeah, I know I’m stupid!  But in this case it seems it was indeed due to going in the car.  As it was my birthday yesterday we went to a favourite spot and just sat.  Except that I was in pain, so it wasn’t very relaxing.  During thenmorning my pain had almost ceased.  Then returned when I went in the car.

i feel disteaught, and kind of can’t quite be,ieve that this has happened.  Webhave thought of all kinds of ways of trying to deal with it.  We used some foam on the seat yesterday, but that just put my body frame out of true anyway.  I just need to have a completely flat seat.  We tried to put stuff onto the seat to try and flatten it but it doesn’t work.

I guess we will solve it somehow, but not sure how yet.  I just,wish none of this had ever happened.

I’M A WOOLWOTHS BABY!

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Quite a lot of years ago (ahem!) my mother went into labour with me on this date in Woolworths!

A couple of years later I got lost in Woolworths!  My mother let go of my hand, and I wandered off (I’m not much different today, always wandering off in my wheelchair at all of four miles an hour !)

Sadly, Woolworths has closed down now.  I am not intending to follow them lol

THE SYSTEM

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We have a system whereby disabled people can get what is called a Motability car. It is meant to suit the needs of the disabled person.  You have to pay quite a lot towards the “purchase” of it in the first place.  Some cars you don’t pay much towards, but others you pay a lot.

In order to get a car to suit my husband’s needs, we needed a certain sort of car that has an automatic electronic hand brake.  He cannot pull the normal hand brake up with his hand you see. Not many cars have that.  But, five years  ago, we got the VW Passat, which is one of the very few cars that have it.  Now, five years later, they forced us to change the car as they only let you keep it for five years even though you have paid a substantial amount towards it.

As you know, we have just had to change it.  They had taken the Passat off the list!  No longer did they allow it.  So we had to find another type of car.  The only one that does an electronic hand brake was the VW Golf Estate.  Apart from a real big 4 x 4 which we did not want because you have to climb up into them, and neither of us can.

So, as you know if you have read my previous postings, we changed the car yesterday to this Golf Estate.  It is HORRENDOUS for me.  On the Passat the seat was totally flat and level, thus it did not put my bones out of joint.  The new seat is shaped, and has a hump in it.  I went in the car last night, and I could have cried.  I knew it was going to cause me agony.  And now, here, in the middle  of the night, it HAS.  I am gutted.

Once  again “they” decided something for us that is totally unsuitable for me.  But because it is my husband, not me, who is the customer, they will do nothing.

I have had a major part of my life taken away from me.  The ability to go out into the countryside.  It has always been my greatest love.  To go and feel the fresh breeze on my face.  To listen to the burds.  To be alone, and peaceful.

it is my birthday today. I nearly died once.  I fought for my life against all the odds.  And I think I deserve better than this.  I think that my needs should have been taken into consideration as well.

My heart is heavy as I write.  My world that was already  small just got even smaller. I will soon be nothing.

My spirit crues out in agony.  I don’t think I shall be writing anything happy for a long time.

This night is so long.  (Written at 4.15 in the morning, in pain

 

 

PAIN HITS

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well, the new car might drive fantastically, but last night when we went for our drive, I knew that my seat was useless for me.  This had been my one biggest fear about getting a new car.  Seats, for me, are crucial.  The new one was excruciating when I got into the car, but I tried to blot it out.  I tried to “make do” and not fuss about it.  We have to take what we can get.  And what I feared the most has happened.  Nothing can be done.  The new seat causes major pain.  So I am awake in the night in agony.

 

Why  oh why do they have to mess with us and with our already difficult lives?  Why oh why do they put us through this?  We can do nothing.  I will either have to suffer pain or not go in the car again.  A fine birthday present this is!  I wrote this piem in my despaur.  “They” forced us to change to thus car!

 

Pain hits
The night is long
My spirit is screaming
I long for the morning to come
Please no
Not now
I feel a black depression hit
Why do they mess about
With lives that hurt
I scream

HENRY HAS BEEN OUT

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So we have been for an evening drive. Didn’t need the wheelchairs for that. Henry seemed most happy and took corners beautifully. We didn’t even notice the bumps in the road. He has great lights and a kind of computer in the middle of the dashboard. He talks to us as well.

If it wasn’t for the damned wheelchair problem we’d be ecstatic. But Henry himself seems really good natured and liked an outing.

Sadly the posh frock didn’t fit. Too many smarties!

More on Henry tomorrow.

UPDATE ON HENRY THE BLACK PERIL

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Well, wouldn’t you know it!  It all went a bit wrong.

Hubby went on his own to pick Henry up, as it was a bit too complicated to take me.  The hoist people had fitted the hoist, but they were meant to be there because they had to get something or other to the right height for my wheelchair.  They didn’t turn up!

Sooooo, hubby and the car salesman had to try to get my power chair plus hubby’s wheelchair transferred from the old car to the new one, but the hoist takes up a lot of room, meaning that they could not get both our wheelchairs in!  You see, when there is no hoist, my power chair can only be put into the car in three pieces as it cannot be lifted complete.  Don’t know if this is making sense or not.

Anyway, the hoist people are refusing to come until next week, which leaves us without our wheelchairs!

Dunno what we’re going to do!  We’re a bit stuck now!

So,  that is the story of Henry’s homecoming.  Henry himself is great!  Much easier to handle, hubby says, and there are other things that are a bonus.  Our old car was a Passat Estate, which was larger, so more  clumsy to handle.  But with this one being smaller, it is more difficult with the wheelchairs.

 

oh well…….

 

 

 

 

SO TODAY IS THE DAY

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Well, it’s just gone 7 in the morning, and today is the day!  Our new BLACK car awaits us at the garage.   Henry!  We don’t pick him up until 2,15 p.m.

 

i did not want black because, having nearly died once, I did not want anything that looked like a hearse!  And this car DOES lol.  It is very big and long!  Black was the one colour that I stipulated I would NOT have.  It filled me with dread.

 

however, the only colour available in the whole country  was……….BLACK!  Lol.  Someone is playing a joke on me!

 

The man at the garage offered to paint a white stripe around the car for me, but I gracefully declined the offer.  So there, it awaits us.  Our BLACK car!  I guess I will get used to it.  But if any of you can offer some  (humorous or not) thoughts to help me deal with the blackness and the hearse bit, I would be extremely grateful!  All ideas gratefully received!  It is my birthday tomorrow, and the garage very kindly arranged for us to pick it up today, in time for my birthday.  Not that we are doing anything special or going anywhere special though!

 

i will report back later on the hearse lol.  After we have picked it up and I have ridden  in it!

#Written for GENRE WRITINH at The Haunted Wordsmith

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https://thehauntedwordsmith.wordpress.com/2019/04/24/genre-writing-challenge-april-24/

I thump the door
I hit the floor
I rub my head
I think I’m dead
I take a pill
I make my will
I put it in
A biscuit tin
I look outside
I haven’t died
I take a drink
I have a think
I take a walk
I have a talk
I saunter home
How the grass has grown
I cut the grass
See the neighbours pass
I wave and smile
It takes a while

EXCITING DAY

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Tomorrow we take delivery of a new car! A specially adapted one fir hubby. It has hand controls and an automatic break and also will have s hoist in to lift my power chair in so he dies ‘t have to lift any more.

It is a Motability car but we still have to pay a lot for it. But it will help hubby a lot. It us a VW Golf Estate so that we can get the two wheelchairs plus the dog in! The only problem is . It is BLACK! We had no choice in the colour but the one colour that I dud NOT want’ with nearly having dyed once was black! I said I would feel as if I was in s hearse! However, I guess I will get used to it!

We are going to call it Henry. Not sure why but there ya go.

Sooooo today will be spent cleaning the old car out. A rather daunting task.

Will tell you about the new car delivery tomorrow!

WHO REMAINS?

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To my Journal:

 

I can only write from memory now.  My world is so small as to hardly be a world at all.  At least in the normal way of thinking of a world.  

But wait……..It still IS a world.  It is just different to anyone else’s. So different as to be unrecognisable to most.
Can our worlds ever touch?  I don’t know.  It all depends on how willing you are to enter a world different to your own.
It is a challenge.  Many do not understand, or they do not like what they see, so they walk away,
So, if I don’t write about my world I have to write from memory of what my world was like before disaster struck.  At least that way it keeps me in contact with people.  Kind of.
But how false is that?  For me, it is hard to be false.  It goes right against the grain of who and what I am.  And if I write in that way, is it s true contact with other people.?
I have thought about this a lot.  I can either be honest and alone or false and not alone.  Now wait a minute….. there must be something wrong there.
And who remained with Jesus?  After the jeering and the mocking stopped.  His Mother.   Yes His Mother.  And  the woman whom others despised.  You know, the one who dared to kiss His feet and cry, and then wipe them dry with her hair.  Unthinkable!  Unheard of!
“Wagons  Ho”.
“Here comes the chariot race”.
“Here come the two reprobates”.
“Hurry up through that door or I’ll beat you with my sticks”.
“Here, let me put a bib on you”.
And when the mocking and the jeering has stopped, who remains?

I WILL WAIT

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I will sit with you my sweet love
Stay by your side
When all others have left
In the barren desert of your life
I will water your soul
Bind up your wounds
Let you rest in my arms
I will bid the gentle breeze
Come caress your face
I will wait
Just wait
In the silence
Under the stars
In the noonday heat
The cold of the night
I will wait

HEAVEN

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The earth was full of teeming,
Purple waterfalls,
Cascading down
Grey granite rock,
In lush fields of velvet.
Yellow heads danced
Gloriously,
White poppies, paper thin,
Swayed delicately
In summer’s breeze.
Never had life seemed so full,
The barren past vanished.
Through moistened eyes I gazed,
And saw
Heaven.

VULNERABLE BUT FREE

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Shave off the years that held your heart in fear,
Start now at this new place, shorn
Vulnerable, exposed, but free.

For so long now your life was ruled, your ear
Heard only guttural sounds, desolate, forlorn,
Shave off the years that held your heart in fear.

In vulnerability find love’s meaning dear,
It is for this that you were born,
Vulnerable, exposed, but free.

Take the risk, your liberation now is near,
Your fear has always been your thorn,
Shave off the years that held your heart in fear.

Grasp, in your nakedness, this void, and steer
Your life to pastures new and warm,
Vulnerable, exposed, but free.

Learn the truth, wipe every tear
Precipitated by the storm,
Shave off the years that held you in your fear,
Vulnerable, exposed, but free

THE CAT AND THE MOUSE

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There once was a cat that smiled all night
It didn’t get very much sleep
It came off best in a cat street fight
When they all ended up in a heap
It strutted around the streets so proud
Singing a song in its head
It thought it was riding on a cloud
Forgetting to go to bed
The streets were deserted, everyone was scared
Knowing that he was the king
But a brave little mouse came and at the cat stared
Then sweetly began to sing
The cat stood stock still at this very strange sight
Mesmerised by the sweet song
It didn’t realise it was getting light
It had been there all night long
The mouse skipped away at the break of dawn
Leaving the cat entranced
All the other cats came and they skipped on the lawn
And everyone started to dance
The brave little mouse had won the war
Now the cats could all live in peace
Never had this been done before
Now the cats don’t fight in the streets.

WOULD SHE CHANGE IT?

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She stared at the world through blinded eyes,
From many different places,
In the warmth, the cold, the rain, the wind,
From her bed, the car, the seashore,
Saw forests, flowers and birds,
She smelled and tasted and felt
The weight of her grief
But also a wealth of joy,
Though now she had to remember,
But as time passed she realised
That she could no longer remember,
Even the faces of those she loved,
And so she said “Goodbye”
Made a new relationship with the world,
One that only she knew
And felt,
A place where she dwelt alone,
Sometimes lonely, sometimes sad,
But sometimes glorious in her insight,
Would she change it?
Ask her

ON SURRENDERING

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I have been thinking a lot about surrendering recently. And what it exactly means. There comes a point in all our lives, I am sure, when we have to lay everything down and just surrender and stop fighting.

When I first went blind, a vicar said to me that I had to accept it. Now, that seemed an odd thing to say to me when I had only JUST gone blind. In actual fact, also, he did not know my insides, and that for months, I had been going blind and that even in the very first place when I knew I was going to go blind, I did totally surrender to it. Or should I say, I surrendered to God. This is not to say that I believe God made me blind. NO! But within that experience of going blind, there WAS a surrendering to circumstances that were beyond my control. To have fought inwardly over it would have been to harm myself. Though indeed, there was, and still is, much grief. I have a friend who went blind twelve years ago, and she still cries most days over it. I don’t cry most days, but I do still feel deeply the grief over it. I would not be human if I did not.

In a sense, I have always felt that my blindness could be used. And it HAS been. It does not stop the brief, and longing to see again. But it HAS been used. Additionally, I CAN see things now, inwardly, that I would not have seen without going blind.

The journey has been hard. I sometimes write of how hard it was and still is. I believe it is important to write about it, not just for myself, but to help others to understand blind people, and what they are going through, and what they need in order to still be a part of the human race. For isolation is one of the main problems. I shall write more about that in time.

But, to go back. Surrendering is a process. It happens over time, and only as and when you allow grace to work in your heart. Acceptance may be another word for it. I was deemed not to have accepted my blindness.  In a way, part of me said “Well why the hell should I? Are you me? Would you do any better? “ i felt that this vicar, whom I had known for years, was badly misguided. It is strange how different people see you in different lights. I do try not to let my blindness stop me doing things, and despite what that vicar said, others have called me courageous. I played my flute at Mass on a Sunday evening, for a LONG time, though blind. It was hard. I am not going to say it was easy. But something in me HAD to do it. I enjoyed it despite it being hard. I am a musician. I love  music. It has been my life. To be able to preserve THAT part of my life despite everything was very important to me, for I did not and do not have much of my personhood left.

I can remember clearly my struggle to surrender, not to the blindness, but to the suffering that I am now going through. I clearly remember going into the little church that I have written of before, and yelling at God about suffering. Just very suddenly one day, it hit me. My life cannot get any better now. Things are deteriorating fast. I am getting more pain. My body is just getting worse and worse. My future is uncertain.  And on this one day, yes, I yelled. I yelled because I had accepted suffering up until then, or surrendered to it, as there was really no other way to have peace, but now, I was angry and despairing about what seemed to be the futility of it. I struggled to accept. I struggled to surrender any more.

In the end though, what is the point of fighting what we can’t change?

I will be writing more about thus in time. But we must always remember that surrendering is a process. It can be a huge struggle for some. No one can judge the state of anyone’s mind or spirit when great suffering is involved. No one can stand on the sidelines in judgement, when they are not in that person’s shoes.

Fortunately, the vicar who said that to me has left the area now. Fortunately for me, anyway.

Surrendering is important, but it may not happen all in a moment. There may be many Garden of Gethsemane experiences before we finally reach that point of surrender.

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A REPOST BUT IT EXPRESSES JUST WHAT SEEMS IMPORTANT TO ME RIGHT NOW

 

Peace comes
In nothingness,
A void stripped naked, full
Of emptiness of surrender
The vain
Longings
For things which cannot ever last
That never truly feed
Or quench our thirst
For life

WHO ARE YOU?

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How far can I run?
The hole deepens
Full of so much garbage
The weight of the world
That I inhabit
One day I will melt
Into the earth
In dust
Light as light
In darkness
Featherlight
Is all an illusion?
“I think
Therefore I am”
But am I?
Tell me my friend
Who are you?

FOWC/ TERSE

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FOWC with Fandango — Terse

 

She was quite TERSE. 

“Walk briskly,” she bit out at me.

For a few months now, I had hardly been able to walk at all.  Gradually my strength had been ebbing away.  It had been odd.  Started with just an itch.  All over my body.  Then I started to lose weight.  FAST.  Five stones in a few weeks!  

“It’s just stress,” the doctor said.

And so, I rolled up at the  Ironstone Centre to see the dermatologist.  Despite hardly being able to walk, I had to climb a flight of stairs to get to her Office.  Always one not to make a fuss, always one to blame myself for things, I pushed myself.  HARD!

When I got to the top of the flight of stairs she was there waiting for me.  The dermatologist.  She’d been primed.  By my doctor.  It was obvious.  

I started to flag, and walking was almost impossible.  But she refused to see what was in front of her eyes.  Or if she saw it, to believe it.  

Somehow or other I managed to make it along the long corridor to her Office.  

“Hold out your hands,” she spat at me.  

I obeyed.  She looked at them, felt one or two of the black spots that had appeared on my skin, and pronounced,

“You have prurigo.  It’s just another name for itch.”

Well, We KNEW I had an itch!  An interminable itch.  From head to toe.  Black bleeding spots all over my body.  Including inside my nose, mouth, and ears!  Prurigo indeed.  Just a fancy name! 

“Good food, and lots of fresh air and lots of walking,” she said.  

Had she missed something?  Had she mussed that I had hardly the strength to walk at all?  Had she missed that I could not eat since food made me puke?  

“I’ll prescribe you some antihistamines  for the itch,” she barked out.

A few months later I was diagnosed with cancer.  A blood cancer.  Which is why the black spots were bleeding.  And of COURSE I could not eat – I had two large tumours in my abdomen!  

Who’s TERSE now?  Methinjs it’s a bit more than TERSE!

GO FIGURE

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When the strong man is challenged
His weakness shows
Not in crumbling
Not in fainting
Words are his guns
His arrows
Specially chosen just for you
To make you shrink
To make you wince
It is his only method
For in making you small
He becomes big
Or so he thinks
I look at the strong man
And know
More than ever
That when I am weak
Then I am strong
Go figure

TODAY’S BLESSING

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I don’t know what got into me yesterday. Well no, maybe I do. It was many things. That’s often how it is isn’t it.

I think I will always struggle. Even as a child I wrestled a lot, thought a lot, asked questions. My brain is never still. The closest it ever got to being still was when I had active cancer, and that was because my mind just went awol anyway, I couldn’t even talk, never mind think!

Yesterday, outside my open bedrooom window were the sounds of people being “normal.”

When I first went into remission, as I have mentioned before, the future looked bright. I was going to get completely better, and return to normal. I would walk my dogs again, I would cycle, I would go to the gym, I would swim my thirty lengths a day, I would drive my beloved car again, and life would be great. It didn’t happen. Instead, I went blind – gradually. I did at one point start to walk, but then it all stopped and went backwards as my muscles died. I ended up in a wheelchair, in constant pain. The feeling went out of my hands and feet, making finding things and feeling my way impossible. I cannot even feel which is the right way up for my dress or top. I cannot dress myself. I became totally dependent upon someone else.

But you know all this already. My life has been marked by fear of what will happen to me. My husband is not well, and anything could happen to him. We are not old though. We have young minds. Mine is a very very active and fertile one. It is my body that is the problem.

Yesterday, so many thoughts and emotions flooded me, hearing the sounds of people outside, through my open bedroom window. The sounds of summer. People DOING things. NORMAL people. Whilst all that I could do was lie on the bed. I am unable to sit for very long, due to the pain that I get, in my back, thighs, legs, and sides. I am unable to support myself. And so, I am NOT PART OF LIFE. My husband and the dog and the budgie are downstairs, while I am upstairs in the bed on my own, unable to see, unable to walk, with only my iPad for company. WordPress is therefore very precious to me. It connects me with SOMETHING. I post a lot, because it is all that I have. The alternative would be to lie here on the bed with my eyes closed, since the light actually hurts them. So I write poems in my head. Some of them stay there. The more painful and black ones!

Yesterday was so pressurising. Easter Day. I gave it a miss! Couldn’t cope.

In the afternoon we did go out. We sat outside the church where I was baptised, in my home village. I didn’t feel great, but managed to think of the church spire rising upwards, and it kind of spoke to me.

Then, back to my bedroom again.

What will today bring? Something more normal I hope. Well, normal for ME. No more Easter hype and requirements to be a certain way. That is a blessing in itself, for me.

LETTING THE SIDE FOWN

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I’m letting the side down.  I’m meant to be happy today, but I’m not.  There is a big black cloud hanging over me, and all I can do is cry.

I know there are people around me dancing and singing.  I know that they are caught up in joy.  In triumph.  In victory.

I can’t do it.  My spirit  is battered and bruised, and I am dead.  I hear sounds of summer  outside.  Lawnmowers, people drilling and doing DIY.  Kids playing.  Cars going past with music blaring out.  This is a holiday.  It is hot.  A beautiful day.

But I am black.  Not on purpose.  I did not ask for this to happen.  This black cloud to descend.  It just did.  I haven’t even the energy to try and remive it.  I am too tired.  Exhausted.  Exhausted with fighting.  I am battered and bruised. I did fight.  HARD.  But I can fight no more.

I cannot feel the Easter joy.  I am not sure I even want to.  I am too tired to dance.  Too tired to sing.  Too tired to care.

I have let the side down.  Badly.