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

I am the north face..I am dementia

I recently found and read a blog that sent me back 20 years to my days at University studying History of Science.  As part of my course philosophy opened my mind set me free.  This blog made me ache for the memories that have become fragmented in my memory.

I received an award to attend the Annual Conference the Philosophy of Karl Popper, 1995, in London which I believe Dr. Ray Scott Percival was the main speaker, sadly I am unable to remember correctly. I do know that ‘he’ was a student working with Popper.  What I also remember was being enthralled with the discussions on the day.  This was not a massive conference, this was for a relatively small audience who were truly interested in philosophies and I absorbed every word to pore over later.  Anyway, this blog stimulates this side of me that is excited by ideas and discussions.

I made some comments and this person wrote me a poem, I cried, as it touched me that someone could put into writing an understanding.  Please read it, the words are beautiful http://darkecologies.com/2014/09/07/lost-time-memory I mentioned that maybe I could put into words some feelings that may be so honest that they are hard to read.  So having been inspired by Mr Hickman I offer the following words.  I hope it can be understood at least:

I am the north face… I am dementia

I am the north face
I am the roots that creep unknown
and define the crack at first overlooked
I am the Tricon of Portsmouth
the Torre Velasca in Milan
I am subsidence from an underground
trickle of death, the dissolution
I am the searing heat of a day
spreading its miasma.
I am the first animal experiment obscuring the truth.

As I dissolve into less
I will become more,

I am the frightening creature of my own imagination
when darkness comes night after night (*see picture below)
I am the accusation spat without reason
I am the darkness without hope
I am the terror of confusion
a constant shifting of time and place
I am the strangers that fill me with their words
that I cannot remember
I am the hand that feeds an occasional moment
of lucidity right up till the end
I am the thief that sews your mouth shut
And hides the terror of knowing behind dead eyes
I am all you shall be

You were a facade that once grew
in architectonic curiosity
Principle of sufficient reason
You were Gothic magnificence
switching patterns of modernism
You were a beam of golden light
a metaphysical ray
That has dissolved into it fragments
and frustration

To become an empty box
Only on rare occasions does your soul appear
During A weekly ‘MaiNene’ ritual for relatives

When I can no longer write
and no longer ‘be’
I wish only to sleep forever

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This is the artwork of Lauren, a fellow dementia friend who generously allowed me use this collage.  Lauren has Lewy Bodys Dementia which can give horrendous  hallucinations.  We can all be amazed at her beautiful artwork and forget that these creatures haunt her nights.  To find out about Lewy Body’s dementia and see Lauren’s artwork please read the blog that another fellow dementia friend has written here .