Do not smile with pity in your eyes

Do not smile at me with pity in your eyes
because then I see an empty heart
Do not write with sadness in your tone
I can still feel every word you write
Or speak in a way that simplifies your voice
in case somehow I have lost my intelligence

When you think of me look at who I am
not who I was when we bounced against each other
Remember the times we had being creative
laughing and talking till all hours
Tthrowing our dreams in the air hoping
to catch them when they floated close enough

Listen when I speak to you because I am still here
I can still feel the same when you discuss a thought
I can still laugh and throw ideas your way
You may see a few cracks but don’t dwell on them
enjoy what I still have and am inside
Understand what I have to say is important
worth a serious listen and response
as you would anyone else in conversation

Think of me with the love of the friendship
we have embraced before, secrets we shared
happy days, the troubled times we put to rest
Now bring that to our communication
A knowing smile, words special to just us
Remember my personality and understand me
Its still lurking in me waiting to peek out
and surprise you.

How do you reach someone who appears a shell?

Speak to me with music that I listened to
being collected on my iPod ready for use,
Speak to me with photographs that I have taken
perhaps seemingly random but
those decaying buildings held sway for me once.
Read to me: poetry, a crime novel, no romance please
George Elliot; my favourite classical author

Know me, that I am not a stereotype
When touch is important, know that I HATE it
Unless I have a manicure or pedicure
Know me in dyspraxia and dementia

Brush my hair I love that feeling
Give me my 18” of personal space
know me that I needed that once

Know me that I love all things alternative
and that my sense of humour may be dark

It matters not
that you may not see these things in me
But know that is what shaped
my personality to the person I became
And to each of you, dear friends
I showed you a side that remained yours alone

So
Do not smile with pity in your eyes
Let me see instead, love, understanding
or a wonderful wickedness of a life enjoyed

Brain to mouth, Receiving, Over?……..(Silence)

jigsaw brain

Yesterday when I got up I started reading a book, so I read from just before 8am and finished it around 9.30pm. I simply could not put it down it was so exciting. This morning lying in bed I was thinking about writing my review of it, but cannot for the life of me remember the name of the book or what it is about. I have absolutely no memory of it, nothing, other than reading a book so good I had to finish it in one go!

I am reluctant to look it up on my kindle to see what I have read as I wish to search for triggers enabling me to bring all the information to mind and there is a part of me that doesn’t wish to hurry this process. Take it slowly, do it right, no frantic word search in my mind to find the key, no frustrating inward shouting at myself ‘what is it about’. 

I will make another cup of coffee and see if I can work through this methodically to prove that I can remember it with the correct triggers I can give myself.

Right here goes: it was a thriller, but not horror …………. there’s the trigger and I have it – Before I Go To Sleep. Eureka! that was easy.  My first memory was a hotel room….can I remember the names; Ben, Claire, Dr ?, Adam, but what was her name..Christine! Eureka again!  Do I remember the details of the book?  Some, not all, if I try to give you an outline I would get confused, I would not be able to get the sequence right but it does not matter because I know how it made me feel when I was reading it. I was excited, on the edge of my chair, I couldn’t put the book down and felt guilty about all the things I should be doing as I was reading, but still I could not put the book down.   

catbookSo how do I review books when my memory about the storyline itself is so poor? I go on the fact that I know what I like, how a books makes me feel when I am reading it and what emotions am I get from the way the words make up the story.  Does a book make me think, do I break down the plot in my mind, can I see what the author is trying to show me. Did the book give me the escape that I enjoy?

What the author is looking for in a review is whether the reader loves the book on as many levels as possible. No book will be loved by ALL because we have different tastes and enjoy different styles of writing. I struggled with the first Harry Potter book and could not read the rest because I dislike the way J K Rowling writes, however millions of people love reading the series. I do however love the films and believe her imagination is wonderful.

When I look at my Goodreads read-books-list there are titles I have no knowledge of reading or what the books are about which means I could read them again as if they are fresh to me, but reading a style of writing that is comfortable is not challenging my cognitive processes. Finding grammatical errors in a book with writing that lacks the finesse of established skilled authors exercises my cognitive skills, because I am determined to focus on understanding the story. This is not always easy when there are days when I struggle with the construction of sentences and have to read the same paragraph repeatedly to make sense of it.  It is often easier for me to leave the book and do some writing.

In my thoughts words flow so easily, I don’t struggle to express myself and can say exactly what I want to say. The difficulty begins the moment I come to speak aloud, then the ability to retain this flow is completely lost; the connection between my brain and mouth is faulty.   I can however write better than I can talk and I believe this is because I am a touch typist. I think – and the words appear in front of me like magic, but if I stop to construct a thought to write it down it disappears. Sadly though this ability does not encompass my memory.  I do have to read over what I have written and rewrite quite a bit though because my fingers are sometimes wayward and write their own things down!  The process of writing takes more time and effort than it used to.

But today I am rewarded finally with some memory of the book I am about to review, so with the addition of flicking through the pages to remind me of the story and using the notes I have made whilst reading, I shall write my review.

Slide28

Punctuation malfunction in my brain and my increasing fear of commas.

There are days when I notice my Alzheimer’s seems to be a bit worse and try to remember to record it for my Alzheimer’s Journey.

So, I will get an apology out the way first – sorry if my grammar and punctuation is all over the place but today my brain cells have gone on strike.

Cats woke us up extremely early at 6.30am – little darlings (smiling through clenched teeth :))) ), and I settled in my chair with my coffee to start reading a new book.

Right from the start I found I couldn’t understand the sentence because those pesky little tadpole commas seemed to be in the wrong place.  I read the first paragraph again slowly but it really did not make much difference.  As you know a comma in the incorrect place can put a totally different meaning on sentence but today for me, every comma seems incorrect.

As I write now I am having great difficulty in knowing if I am putting commas in the correct place and it has suddenly become a real issue.  I have no idea why I am stressing about it so much because if I stop maybe the fear of commas will just fade away again!

I am also misspelling words more frequently.  Being a touch typist I have no mental idea where my fingers are on the keyboard; I think and they transfer my thoughts by themselves.  If I had to think about where the keys are or how to form words I would fail to write anything.   Lately what I think is not what my fingers are typing, how can that be?  It is as if the diseased part of my brain has taken on an identity of its own, one which may be a little dyslexic and mischievous.  I can see words forming on the page that I have not even thought about and not even Freudian slips, but words that are incongruous.

I think sometimes that my macbook changes the words as I type and I fail to notice it which leads me on to how I read.

I am finding it really hard to read what I have written and with short term memory problems I usually have no idea what I have written minutes after writing it, so if it gets mixed up on the page I wouldn’t necessarily remember what I was trying to say.  When I am reading it back I am constantly questioning my grammar and punctuation but often than not I have no idea any more if it is correct.

I gave up trying to read my book earlier and thought I would surf the net.  I will read my own blogs from time to time because I don’t always remember what I have written and have a need to check that I have not made any major gaffs.  So, I looked at my latest book review – Broken Monsters, and was horrified to see that it was all over the place with spelling mistakes.  I am sure I proof read it before I posted it but guess now that I cannot trust my own ability to do so, which is why I  go back and re-read it the day after.

It makes me feel so embarrassed to make these mistakes for all to see because it somehow makes me less literate than I used to be (was I ever that literate!).

Dementia is such an insidious disease which is less understood than it should be.   As you can see I am not in the middle or later stages, but at an early stage so I am very aware of these small changes which I cannot do anything about.

Do you judge a blog by its grammar and punctuation?   I used to but now I understand that it is what people are struggling to say that is more important, but are people less likely to read a blog that has grammatical errors in even if the content is interesting?

 

Disaster on the software/hardware front!

It struck after getting a new computer.  The question was how to transfer photos and documents from my Asus to my new Macbook Pro – yes a luxury that I already love.  I have most of my photos backed up on a Toshiba external drive and needed to format my drive to be FAT or whatever, so copied the files back to my Asus…………….but instead of adding them it didn’t.  Did it overwrite the files? No and I have no idea quite what it has done.  My original files are there, well most of them but my ‘story’ I have been writing (70,000 words so far) has gone, the only copy left is from October 2013 😦

I am mortified, both my writing and my photos have gone, so much for having kept them safe on an external drive.  All my wedding photos but  thank goodness Mr Hsg has got as many as I had.  Apart from the pieces I have posted on here, with my memory problem I will never be able to rewrite what I have lost.  I thought it was safe keeping it on an external drive but no, I should have printed them all out, you can never beat paper copies.

There is no point in being upset, I have to try and continue using what is left.  I have a file with photos that I had include in my writing so can guess what I was writing about and start again.  I will never remember anything I have written without them.

Onwards and upwards.

 

How time flies!

Early December at Kings Bromley Marina

Oh my goodness it has been ages since I have last posted here.  I will need to bring everything up to date as I remember it.

Well, we returned back to the marina at the beginning of September both feeling exhausted but satisfied with the trip.  We both remarked how our dis-abilities made the activity of locking and boating harder this year than before.

Falling back into the routine of living in the marina was disturbingly seamless.   With the boat always throwing up some maintenance conundrum, the first was the calorifier  (hot water tank) splitting and leaking into the boat.  The cupboard it was sitting in had to be taken apart to remove the tank, followed by a trip to various chandlers to buy a new tank plus an assortment of brass and plastic fittings to create a twisted maze of new pipework.  New stop taps had to be put in, expansion tank, and the tank itself.  The whole process took a week to complete with Mr Hsg trying to fold himself into the smallest spaces to complete the job.   Thank goodness he is more than capable of DIY plumbing, carpentry, and electrical works, with some engineering.  Canal boats are expensive creatures demanding money being thrown at them with distressing regularity.  Following that he moved the water pump to sit underneath the kitchen units, to keep warmer in winter months so that it cuts down the delay of water flowing from the tap.

I have focused my photography and creating some cards.   I made some cards showing various aspects of the marina and took them to the office to see if they were interested in buying them.  Brilliant, they wanted them and more!  So, now I have been supplying them with Christmas Cards of the marina, people love to see their boats on a card and they have quickly sold out.

I would love to find a way of selling them elsewhere but struggle with trying to sort it out.  I thought about setting up a website but my computing experience and knowledge is disappearing and I have struggled to sort it out.  I will have to look at ebay or Etsy if I can figure out the logistics of it all.

Update on my Alzheimer’s – I have finally in these past two weeks, seen my new consultant at Derby Royal Hospital and have begun Rivastigmene tablets.    I can feel myself withdrawing from anything social a little.  Its not that I want to, it’s almost like a fear of going out, and I have no idea why.   I have to choose the books that I read a little more carefully as I have struggled to work out some of the story lines in some which is a bit of a pain because I do enjoy reading.

I must try and post more regularly to keep my motivation going.

This might offend – I don’t believe in god

These are my thoughts on religion

I don’t believe in god and like to think myself as an Informed Atheist.

My parents are Methodists and my sister and I were brought up to attend Sunday school every week and I finally stopped my association with the church when I was 18.  At 16 I had become a Sunday school teacher myself and grew to question the material I was given to use in the lessons.  I did not believe that god made the world…nor anything after that.

My mother told me I was wicked and evil for not believing in god.  The more I thought about why I do not believe the more I wanted to explore religion in general.  It felt like being on the outside of a tank studying the contents but not being part of it.  What I saw in religious history was social control by men during a time when they wanted power in their societies, and there being no better way of doing that with a god that no one could dare to question.  With that came the power of the religious men who ruled the nations each with their own brand of religion.  Listening to people talking about how everything ‘is gods will’; is to me hearing how no-one wants to take responsibility for their own actions or accept that things do happen without a reason – deal with it and move on.  We all die of something, whether our bodies can no longer regenerate cells and repair itself, or illness; that is natural, there is no design by a deity when that will happen.  Death by war, accidental death or murder is not natural and is caused by man.

I studied the History of Science at the University of Leicester and for my final year I chose  ‘Science and Religion’ with Professor Brock and this is where I learnt how different religions have been constructed from the beginning of the human race.  There were seven students in this class and some who were devout Christians,  I asked one fellow student if it dented his belief in god and he replied that it did not change his belief in anyway.

We learnt about the bible and how long it took to write, the context of the times it was written, and re-written, culminating with the study of the learned men who research the original writings and various translations which changed the context of the writing.

Throughout history the revelation of scientific theories has meant that religious belief has had to be adjusted and manipulated to cope with the anomalies.

The increasing explosion of population puts a strain on geological and other resources so men fight for their patch.   In 1798 Thomas Malthus wrote An Essay On The Principle Of Population which I read in its entirety.  Thomas Malthus was a minister who within his writings talked about the earth only being able to sustain the number of people it can feed, the same as animals.  Yes, his writings were very controversial and certainly racist, but he approached the idea of people’s relation to their environment theories that Darwin and Wallace would have read and pondered upon in their evolutionary theories. Darwin struggled with his religious belief after publishing his Origin Species, although came to be content with god designed evolution as well.

When I look at Islam, I wonder why any god would decide that women were inferior and not seen with equal power in society.  Here is where I say: please don’t try and convince me that women are not repressed as human beings in the Muslim faith. Nature vs nurture – Muslim girls grow up being taught their place as decided by Allah/Patriarchal leaders and male followers .

Circumcision in girls – so that is acceptable?  No of course not, but it is done in the name of religion for no religious reason that anyone can fathom apart from the repression of women by the men who rule in the name of religion.

I am not advocating women’s liberation because that is a nonsense; we are human beings with different strengths and weaknesses that give us a natural ability to survive as a species.

The more I read and studied the more I understood what religion is and what its effect has been on the world.

War is being raged in the name of religion and it matters not which faction of religious parties are fighting or in which country because it is about power of male leaders in countries where on the whole, women are repressed and dominated.

Faith;  why should people have the need to have faith in something to be happy.  Without faith most people would be unable to cope with mans ability to be so cruel, so inhumane.

Okay, some would say where does ones sense of morals come from if not from religion, although its debatable whether all religion have a good sense of moral living.  The need to survive in animals creates tolerance throughout the animal world, and we are just another animal who happens to have evolved a larger brain.

I have Alzheimer’s and Fibromyalgia, and hypermobility so that I now have arthritis.  I have a headache in the right side of my head every day which I have had for several years.  It turns out I may have brain damage from trauma to my head as a child (my mother always aimed for my head when she hit me regularly).   These things just are; some is a genetic predisposition, the damage of my brain comes from someone who believes fiercely in god.  Ironically my mother’s own vascular dementia was first noticed in church, having gone to the toilets and not able to find her way out again.

I cannot understand why anyone needs to have some higher person to be able to love themselves, to know how it feels to be a nice person and not hurt anyone else, and enjoy each day without the promise of a (non existent) heaven. To know what is good and what is bad.

I simply, have no need for faith or religion.

Books

Image We walked a short way at Shugborough Estate the other day, It was a mixture of bright sunshine and dull sky.  It was bitter outside but still.

I think I may have migraine today I feel….slightly jittery inside, I have a headache and I feel nauseous.  I have had more lately than I have had for a while.

I was musing through my bookmarked sites this morning and spent some time on Goodreads.  I love books and have probably read thousands throughout my lifetime.  These days I find I am not able to read more than one book at a time, and when I do I have to keep reading it regularly at a steady pace because I forget who the characters are.  The complexity of the links between the characters become confusion if they are not explained when they are introduced.  I used to be able work out the relationships and connection between the characters which becomes frustrating because I am constantly having to re read parts to get them.  This is a shame as I have so many books lined up to read!  Currently I am reading The Almond Tree by Michelle Cohen Corasanti which promises to be an excellent story with lots of characters whose connections are important.  The names which are not English are unfamiliar to me which will make it slightly harder to remember, but I am excited to read this book.