The Demons of the Night

The demons of the night

(Nights are Worst of all) 

Images of grey & sobs of sorrow

Fill the silky blackness visual void

Eyes straining wide but could simply be shut

Ghosts in the shadowy blackness take form

Or replaced & filled with images of my mind

Turned out in vivid colour and sound

Often without my control or conscious decision

Often billowing out of my subconscious

Or longer term stores in my head

I had not been aware of

Like a selection of long forgotten DVDs

And videos stored in the library of my deepest mind

Around me sound so silent they confuse

Perplex me as to whether I heard something

Or perhaps I heard nothing

Now ears strain as much as eyes wide

My mind being made a fool of by my senses

That strain in the sensory void of night

Strain to the point of tearing of my mind

Made a fool by the nightness of it all

By the blackness of it all

By the silence of it all

With an unquiet mind racing

The only sensation I trust at this moment

The feeling of tears rolling silently down skin

No matter what the cause of this reaction

This creation of my mind

The sadness of can be allowed to register

Alone in the black silkness it’s safe

Safe to let the tears form and seep

Safe to scream in my head as loud as needed

To express my sorrow behind the daytime smiles

Smiles to reassure all around me

Reassure I haven’t felt humiliated

Embarrassed and dignity destroyed

Whilst my care needs are met

Those trained to maintain my dignity

The very people that lack real understanding

Dignity disintegrated and humiliation is the very effect

To be cleaned, washed, showered and dried

So in the light one smiles

In the dark images of the horror faced everyday

Is unleashed into floods of tears

And the loudest of silent screams

Where no one will feel to blame

For what I have become

For what I go through

For what I feel

For the loss of dignity

The humiliation

The shame

Remembrance of what I once was

Realisation of what I am now

Realisation of what is to come is worse than no

Tears soak my pillow

My mind functioning in a body rotting

My mind will be last to go

So cruel this nature’s mother to leave my mind till last

When I think of this cruelty

This deliberate torment for reasons unknown to me

I feel my soul haemorrhage tears of angst

Rising through me to take physical form

In muffled cries and wet tears rolling from my eyes

Such a cruel undeserved torment

But this is the final trick of my mind

The belief I may deserve this

Deserve the cruellest of slow endings

I must deserve this

If only I knew how

Why…… 

I wrote this as my nights are the worst of all times for me, they are full of thoughts so negative in nature, so harsh on myself, they talk about dignity in personal care, well I can tell you it is hell each and every time I receive personal care. To be exposed, washed, dried, inspected for skin integrity and then creamed before a nappy is placed back in situ. Where is the dignity in an adult, no longer able to care for themselves, a once proud independent and successful adult who supported his family and never asked for anything in return, within a few years to have all this turned on its head – WHY ME! 

Now I need care with all aspects of my life and then the effects of the drugs means I fight harder than ever I have fought just to think, Constantly my mind deals with the horror I experience with personal care, with my family as carers, with never being able to make a decision without consulting the person who will help me implement any action I want. The Constant impact on having your status reduced to that of a needy child or baby, the respect you once received vanished with the first nappy I had to wear, so long ago now. 

But there are two aspects of cruelty that come with this condition and others like it where high levels of care are needed:

  • You spend so much time waiting, waiting for someone to come into your room to assist you, waiting for someone to come into your shower room to clean you, waiting for people to turn up to change dressings, change nappies, allow one to have a drink or food. Or you wait till you can hear someone close by and call to them, only to see that look of “what now”, although this is never said, and you feel guilty for them having to help you, for calling them, for disturbing them. It’s the look they can never hide and cuts you to your selfish core for depending on them when once they depended on you, its soul destroying to rely on others that once respected your strength and now all they see is your need, your weakness, your frailty.

  • The other aspect is the complete lack of spontaneity, unlike others I cannot just go out, just go have a shower when I want one, even have a meal when I want one, etc. Everything has to be planned, is it accessible where we are going, do we need to take medication with us due to the length of time we will be there, who is taking me, what is the terrain like, where are we going to park, what is my estimated fatigue level going to be, and it goes on, and this is only when going out. So everything is planned and timetabled, people booked, people trained, equipment gathered, and route and destination pre evaluated like some military campaign about to unfold. It is so complex, so anxiety provoking, so capable of going wrong re parking  or other, that most of the time  I don’t bother, and never to somewhere new. 

One becomes caught in a ‘catch-22’ as it becomes too much stress to face going out, and then I pine to go out more, weeks can pass like this. But only at night does the reality of a semi agoraphobic life seem really, when the busyness of the household during the day does not allow me to think, the quiet of the night is when I am prey to my feelings. The dark wings of the night wrap me in torment and turmoil until I cry and scream so quietly, as not to disturb those sleeping next door. This is a cruel torment to leave my mind till last – hateful of Mother Nature to punish me this way. 

There’s a path less travelled by most

Not even known by more

But forced upon the minority

The path of daily pain and discomfort

Worse at night but on the prowl during day

Often always there in the background

Watching, waiting, gathering its’ storm

It never rests, never needs to

Feeds off the anxiety, the anticipation of distress

But the very word pain

Such a broad vast spectrum of suffering

From mild headache to hammering migraine

From sensitive teeth to searing toothache

From muscle soreness to crippling cramp

From a dull back ache to a

Devastating, pulsating stabbing, life ripping

World changing hurricane of life altering living hell

From manning-up to curling up in the deep of the night

Covered and hidden from those that would worry

The time when darkness allows me to

Curl up in foetal position sobbing for a life that was

Yours

Jonathan Wade

Smiling Cat Ventures and Innovations Group

Including:

Smiling Cat Ventures Ltd (www.smilingcatventures.org)

Innovative Minds At Work Ltd (www.innovativemindsatwork.org)

Moments in Time Ltd (www.momentsinmind.org)

Innovative Business Consultancy Ltd (www.ibcv.org.uk)

Systems of Equality Ltd

Passport to Care Ltd (Social Enterprise – Not For Profit)

Spiritual Inclusion (Social Enterprise – Not For Profit)

Disability In Business Centre (in development)

Additional Information can be found at:

FB:           http://www.facebook.com/DisabilityInBusiness

Twitter:    https://twitter.com/AbleNotDisabled

Blog:         https://disabilityinbusiness.wordpress.com

LinkedIn:  http://www.linkedin.com/pub/jonathan-wade/59/6/532

https://disabilityinbusiness.wordpress.com/2012/10/08/an-ageing-entrepreneur/

http://www.northeasttimes.co.uk/ArticleDetail.aspx?id=2704

Advertisements