A demented outlaw from my own bed


I live in a cracked world
Dislocated
Damaged
Assaulted
And violated
By ordinary things
Noise is an insult too far
I cannot bear it
It does not just hurt me
on the outside
It invades me
It dismembers me
It jellifies me
On the inside
Where no one can see
Or know
The true horror of my experience
The sheer extent of the
Vibrating damage.
I am screaming in torment
My muscles belong to no one
Anymore
Certainly not to me
They are beyond my control
Long gone
Into an abyss
Of dismembering
Horror
Indescribable
In its violence
Far too easy
To say
pull yourself together
And to blame me
For my incapacity
To bear it
Even for a moment longer
Than to
Understand the tremor
Of despair
The complete and
Overwhelming
Destruction
Of my grasp
On ordinary
Reality
So long gone
Now
That I am an
Alien
In my own
Home
A demented
Outlaw from my own bed
Separated
By an invisible barrier
Of violence
That assaults
Only me
And leaves my body
Non compliant
With my mind
And broken
In a heap
Of writhing
Agony.

Comments

  1. MalinaAugust 6, 2012 at 3:15 AM

    I wanna cry... how did she manage to put so much beauty in so much pain.. I've never been able to describe how I felt about my disease and she merely did it, in a way that no one could have done better. She talked about torture with such grace.. carrying hope even thought deep inside there is no hope anymore. Respect and love to her... She's still there in our minds & I'll keep fighting for ME, I'll keep fighting for what she accomplished despite her condition, I'll keep fighting for all of us sufferers, who deserve to heal..

    ReplyDelete
  2. Holy WayAugust 6, 2012 at 7:10 AM

    Dear Malina, thank you so much, your comment greatly strengthened Linda. It is so good to be heard and to know you are fighting too.

    With love,

    Greg

    ReplyDelete

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more