Wake up to Narcolepsy!

Lost time.

19 October 2007

12:35

The pain is ever present

Sharp, knife-like stabs and a background gnaw.

Where are the nurses?

How long does it take?

Patience is ebbing, as pain is flowing.

Ah! Assistance at last.

Relief floods my mind, momentary warmth.

Then pain. Different pain.

The pain of surprise; complete  disbelief,

mingled with suspicion.

Is this a conspiracy? Am I going  mad?

Pain surges again.

Shock  opens new  wounds and fuddles the brain.

The pain should begin subsiding.

At least I can anticipate a shorter wait.

But the shock lives on, and opens new horizons.

What beast is this that swallows time ?

That devours memory and erases consciousness.

Stealthily preying, un-noticed, unsuspected;

A spectre of a far off world.

Unpredictable, dangerous.

If I can loose time, have no record, no proof.

If I can loose memory, have no inkling or awareness

Of things as I do them, or say them,

What next?

How can I prove innocence, ignorance, absence?

This worry torments me, though I live a good life.

This is a monster who steals sanity too.

But at least I know now…conclusively.

I have been aware, like many, and suspicious

of strange occurrences, but this is the proof.

I am armed with my weapon, my knowledge! 

The bigger more pervasive monster lurks near.

Society’s ignorance, unwillingness to listen,

or learn anything new.

Now that is the real fear.

 ©DF 2007

Written quickly, and in rough form, by no means a good poem, but it illustrates one of the problems narcoleptics face…lost time. Often we misplace things, forget things etc, the same as other folk, but sometimes it can be more serious. The example in the poem is of my experience in hospital, when I was waiting for my meds, in a lot of pain, and when the nurses came, they said they had given me them, ten minutes ago. They were as shocked as me, but they should have read my notes and had an inkling of what had happened.

The point in the poem about danger, is that people have been known to kill whilst asleep, and have no memory of it. I don’t think for one moment that would happen to me, (gosh…I hope not!) but there are plenty of senarios that come to mind…taking meds twice, because you have no memory of the first time, being the obvious one here.

As a start to the poems catagory,  I give you my own poem about the condition, which was meant to reflect my frustration at being constantly interupted by dreams, whilst awake and trying to write. By the time I had finished, I felt great relief and was able to see some advantages to this ‘problem’, the main one being an unexpected aid to creativity.The poem isn’t great but I hope it will give some insight into one of the aspects of this condition.

Double Vision.

I explore new worlds;
I read and create;
Key-tapping unfurls
ideas innate.

I am engrossed;
And wholly absorbed;
when a fleeting ghost,
colourfully daubed,
floats across my vision.
And then many more!
A bright myriad collision
of shapes, dancing before
my eyes, without permission!
And still they come…
Not one an image of my volition,
and yet powerless, I succumb.

Hold on! My eyes protest
and coming to, I realise
my dreaming state I must arrest.
Gently return uncomfortable eyes
to a position where they can focus,
once again on my concern-
the computer screen - my current locus;
or perhaps I should adjourn?
But I need to continue
my exploration, and so
I begin my study anew;
hoping the visions will go;

But within half a minute,
another sprite has appeared.
A curse I emit…
It is just as I feared.
This dreaming is weird
as I am still wide awake
(or at least it appeared)
‘til my eyes start to ache.
However, I know
It’s a well known paradox
acknowledged long ago.
But my sanity it mocks!

It is part of my narcolepsy,
So I am used to intrusion;
but it could cause apoplexy
or mental delusion,
to those who have never
been asleep whilst awake.
No matter the endeavour
or the precautions you take,
it will arrive when it wants;
Chaos to administer;
Your sentience haunts,
it’s filtering, sinister.

For sometimes it’s difficult
to tell reality from dream.
Confusions result;
And things aren’t what they seem.
However, with time
it becomes less difficult
to control this raw pantomime;
the daily assault.
But it can help with the process
Of fresh creativity
Helping express
One’s positive activity.

I doze a short while,
Giving in to the dreams,
And then start again.
I stick to regimes.

© DF2007

As I have recently been diagnosed with narcolepsy and have thus been researching the subject, it has become apparent that there is very little literature featuring the condition or those who have it in whatever form. I am sure there are many frustrated writers out there who feel that if they could just keep awake for five minutes longer, that book might progress faster, might even get finished. I find writing theraputic. After writing a poem about narcolepsy, which I thought was expressing my frustration with the repeated attempts to write, I found that not only did it make me laugh, but also gave me a more positive outlook. So what if I sometimes dream whilst awake. Those annoying images that creep upon me uninvited can sometimes bring inspiration, and have on more than one occassion led to successful creativity. Rather I should celebrate my inner pictureshow, although I have to confess that it is still a little annoying at times.

My intention with this blog is to encourage other narcoleptics who
write, to join with me and post their work, especially if it helps raise awareness. I would also want to encourage aspiring narcoleptic writers to join me and give their perspective on this condition, and help educate others. Most fiction and films seem to treat narcolepsy in the age old stereotypical way. Person awake; person falls to the ground, asleep. Or person goes into trances etc. This not a true representation of narcolepsy, although obviosly it is near the truth for some who have it. Most of us, however, have narcolepsy in varying degrees with a huge difference in the severity of each symptom. I will shortly put information and links to sites about narcolepsy.