TWO SILHOUETTES.

 

I see them from where I stand: Two silhouettes on the bridge.

A man and his dog.

Isolated figures, etched in black ink.

Who notices them, there, poised on the brink?

Who notices the small dog, or the man with the blank, glazed eyes?

What dark, tortured thoughts pester and fester   and plague him?

Impervious to them, as they are to him,

he  gazes down from the beckoning bridge.

Heedless of the meaningless, merciless roar of traffic – Motto perpetuoso – 

he hears only the demons of his soul.

Two silhouettes trust tightly together.

 

Trusting little dog wagging its stubby tail.

 

Big Ben striking 5 o’clock;

 

and in perfect synchronisation the man raises  his arms.

 

Two silhouettes flying through the air, somersaulting, twirling,…

 

And myself, helpless, merely a fly on the wall.

 

And traffic grinds to a screaming halt,

 

as at last they are noticed.

 

 

How has it happened, this sad ending?

 

Oh, and poor, small dog, who had no say in the matter.

 

BY VALERIE  BLUMENTHAL

Hello, It’s Me.

A personal account of living with PCA Alzheimer’s.

By Valerie Blumenthal.

 

Shadows.  Reflections.

Where should I look?

Where should I place my feet?

 

What is real?

What is not…

 That I see but do not see?

My daily adventure.

 

CHAPTER ONE.

I am not sure how to begin this. I could begin with myself, now; or I could begin with myself, then. I could begin with an anecdote, or a salient fact; but no, I think, perhaps I shall begin with an abiding memory.

A woman is on a large chestnut horse, galloping across a series of fields. She is not wearing a hard hat, and the wind tears at her hair. The rhythmical drumming of the horse’s hooves fills her ears. Apart from the wind it is all she can hear, and as she leans into the   horse’s sleek body she is laughing from pure exhilaration.

We had each other for twenty-two years. My beautiful chestnut horse was buried in a friend’s orchard, more than a decade ago. As one would expect, much has happened in the interim; but writing this, I am propelled back, into a thicket of memories, and time has concertinaed, fuelled by nostalgia.

I dream of my horse sometimes. I dream that I am that free spirit again, un-curtailed by the confines of PCA Alzheimer’s.

PCA, or Posterior Cortical Atrophy, to use its full name, is when the back part of the brain has withered. It is this ‘zone’ which is responsible for vision and motor skills, and is considered to be rare, though I have my doubts. I believe it is misdiagnosed or un-diagnosed; not surprising, considering the weird raft of apparently disparate symptoms.

If I had to describe what it is like to have PCA, I think I would have to liken it to suffering from very severe dyslexia, coupled with dyspraxia, and dyscalculia. With the passage of time these become ever more extreme and daily life, ever more of a challenge. It is the same form of Alzheimer’s which afflicted Terry Pratchett, and it creeps up on you with the stealth of a thief. Generally it kidnaps you in your fifties or sixties, when you should still feel at your peek.

There was a time when my brain and I were on intimate terms; cosy bedfellows privy to one another’s innermost secrets. Now the brain gremlins and I are at war. PCA quashes the free spirit in you. As the disease progresses, so, increasingly, it chips away at your confidence, and deprives you of your of independence. The second you step out through the front door, particularly when going somewhere unfamiliar, you feel vulnerable, exposed, and the tension rises in you. Relinquishing your independence is a hard thing to do, for a once-upon-a-time Free Spirit. Inside you, you sometimes want to yell out that you are too young for this. But finally I have capitulated to the comforting reassurance of my husband’s arm, and allow him to shepherd me, across the road, and to navigate the pavement’s hazardous straits.

PCA is, to say the least, inconvenient. It can also be downright embarrassing, and a good sense of humour is essential. Imagine the following: You go to sit where there is no seat and finish up, sprawled on the floor, legs flailing in the air. Or you go to the post office, where a snaking queue is causing tempers to fray; you make a beeline for the front, prompting mass fury.  Or you go into a neighbour’s quilt-sized garden, become disorientated, and cannot find  your way out. It is as if you have been spun round and round.

 

I was eventually diagnosed nearly three years ago, but looking back,  I believe that the  first signs  of  the brain gremlins invading my life was at least four years prior to  that; small things one could easily dismiss  or explain away. And now something else comes back to me. My mother was still alive then; she had Parkinson’s, coupled with dementia, and she had good and bad days. On a bad day she thought my brother was  my late father, and insisted that her mother,   who would have been a hundred and fifty, was coming for tea.  At other times she could be almost her old self, lucid, wise, even witty. This was one such day. The weather was fine, and I managed to get her to walk round the garden, with her frame. She focused determinedly on the ground, head bent in concentration.

Our passage was slow, with several stops. During one of them she turned to me with softness in her still beautiful eyes. Taking   my hand in hers, she told me that she was not afraid of dying, that she believed in an afterlife, and I should not be sad when she went. It was a moment of unique closeness, and I can hear her voice and am so grateful  for those words.

We resumed walking. Her shaky legs were thin as knitting needles, and two circuits of the garden were sufficient for her. We went back indoors, and I settled her in her chair. She was perhaps a little tired, but that was all; she wasn’t confused, and her speech was lucid. She even enquired about the new novel I was writing, and expressed interest when I told her it was set in Sicily. I  walked  across the room  to put a CD  on the player; I  was aware of  my mother staring at me in a strange way, as though she were assessing me. I returned to her side. The overture from Mozart’s Marriage of Figaro rang out. My mother continued to look at me, now with concern in her expression.

I hope you aren’t getting the same illness as I have, she said.

I was taken aback. I cannot recall how I responded. What prompted her to make this extraordinary utterance? What had I said or done? What had she seen in me then?

How prescient her remark   proved to be. No, I don’t have what she had; however, the similarities between the diseases are enough to have made it plausible. Indeed, as time passed and the gremlins plotted what trick to play next, it was what I myself suspected.

My mother died several years ago, but lately, as I become conscious of changes in my condition, I feel more and more, close to her. Sometimes it is almost as though we were each other and her strength has gone into me. I would like her strength.

This entry was posted on February 18, 2017. 2 Comments

special day.

An amazing day yesterday.  I spoke at  St Hugh’s  College, Oxford, for the Fifth Annual Conference of “Creative  Dementia”: This  fantastic organisation provides a forum for a network of arts-based activities  for   people of all ages living with dementia.

The  activities include: singing, dance,  painting, playing instruments, art appreciation, performing… and more besides. All these help restore   vigour,  purpose, excitement, stimulation, and self –worth to the  many whose  lives have  ceased to  have meaning.

As someone with PCA, the same unusual form of Alzheimer’s which afflicted Terry Pratchett, I cannot  stress enough  how wonderful it is to be able still to express yourself through the arts;  how essential for the soul; how important for wellbeing.

I felt so privileged to speak yesterday: The atmosphere was quite incredible, and the warmth of  the  audience  –  more than a hundred strong – the feeling  enveloped me.

Thank you, to Maria Parsons, Co-founder , for inviting me.

 

 

 

 

 

FEARLESS.

The image of Alzheimer’s needs to change.

Too often it is a whispered word, as though it  is something shameful; as though it is repugnant. To most people it seems foreign and frightening. They conjure up a kind of Bedlam, where everyone is drooling, screaming and moaning. Or they conjure up the silent shell of a human being. And, sadly for those who are severely afflicted, this can be the case. But Alzheimer’s/Dementia has many faces, of all ages and many variants.

I have no doubt that there are many people with the disease, walking about perfectly ‘normally’ and getting on with their lives, as I am. And the only person to know that they had Alzheimer’s, would be themselves.

However, in way do I want to minimise Alzheimer’s: As it becomes more extreme, it can be grim, indeed.

What I would like, is to see is more Awareness, and less Prejudice. And always openness.

There’s no shame, in having Alzheimer’s. It’s just another stage.    I should know.

This entry was posted on April 28, 2015. 1 Comment

A VISIT.

I scrawled the following, after visiting my aunt, who is in a care home. A woman in; it was shocking  the next room was yelling and cursing. I cannot stop thinking about her, It was both pitiful and shocking. It puts my own form of Alzheimer’s, known as PCA, in perspective . PCA  is the atrophy of the back part of the brain, and affects vision: ie space awareness, orientation, perception, literacy, motor  skills, and much more; but it does not affect  cognitive function, ,which is governed  by the front part of the brain. That said, PCA is likely to develop into the more familiar  form at a later date.

Anyhow, here is the tiny piece I wrote.

Time Laps.

The child she was, visiting the child she is.
Do they greet each other as they fly by?
Tea in a cup. Laughter in aspic.

This entry was posted on January 27, 2015. 3 Comments

A SOBERING TIME.

Staggering towards the tail end of another year, what should I feel?  Pride in the small things achieved?  Sorrow for the big things that I have not?  Acceptance of my condition? Or rsistance? But of course I know the answer to the latter: It has to be acceptance.  I can then confront what the PCA Brain Gremlins may or may not have in store.  I am not alone.  There are others like me, whom I have met and laughed with.  Watching us, a stranger would not guess   our secret.  But there is a curious shame within me; a sense of incompleteness. I feel a repugnance at my own condition, as one’s dignity is chipped away. All of these negative thoughts, I try to banish:  They serve no purpose.  It  is more constructive to regard myself as a kind of laboratory and note each alteration in myself with a detached objectivity, and thus, another stage of life.  And this is life. And we are alive. Life, and how you live it, comes in many guises.

This entry was posted on December 20, 2014. 2 Comments