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Emily Rose: an appreciation by Cathy Stillman-Lowe

Emily Collingridge's passing is a terrible loss - the light that shone so brightly has finally been dimmed after many years of deeply painful struggle. Her extraordinary spirit will however never be forgotten by those whose lives she touched, and her book ‘Severe ME/CFS: A Guide to Living’ constitutes a permanent and invaluable legacy for those suffering from severe and very severe M.E., as well as those caring professionally or personally for such people.
I was able to work with Emily on several publishing projects; her formidable intellect, her facility with words, a relentless drive and determination to see a project through, and a consistently meticulous attention to detail led to the highest quality output.  Her book remains an outstanding achievement, and testament to her determination to help others and turn her suffering into a force for good.
As a friend, she was tremendously thoughtful, generous, honest and loving.  I first met her through a feature that I was writing for a magazine, to which she contributed a typically eloquently expressed case study. I didn't realise that it was humanly possible for someone to suffer so much, particularly towards the end of her sadly short life, and for there to be no 'cure'.  To stay constantly alongside someone when you can't 'fix' things or make them better is a particularly tough challenge. However, through it all, Emily was very clear that there was no ‘hierarchy of suffering’ in which her pain was more important than the health problems that I was encountering myself.
I never knew anyone suffer in body and soul as Emily did, and her struggle to access M.E.-appropriate healthcare was distressing to witness. So often the severely affected are in fact severely neglected by the NHS; thus the inverse care law applies in that those most in need of care are the least likely to receive it.
Very severe M.E. is a terrible place for anyone to live, but Emily did so with huge courage and for a very long time. To know that Emily is no longer suffering may be some consolation for those she leaves behind. If there is a heaven, it will be the richer for her presence. Emily’s life is an inspiration to continue to campaign for proper recognition and treatment of the devastating illness that is severe M.E. Her work lives on, and others must now take up the cause with redoubled efforts. Emily Rose - may flights of angels sing thee to thy rest!

July 2012

A demented outlaw from my own bed

I live in a cracked world
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
Certainly not to me
They are beyond my control
Long gone
Into an abyss
Of dismembering
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
Of my grasp
On ordinary
So long gone
That I am an
In my own
A demented
Outlaw from my own bed
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

Perhaps this is why ME is so maligned

What is so terrible is the invisibility of pain. 

You just can't see the burning throbbing screaming writhing nerve pain shooting in my whole body, the black blankness in my mind, the massive throbbing head pain boring into my brain the burning stabbing itching eye pain, the swollen nauseating stomach pain, the effort of no energy in your muscle, the brick wall affect of breathlessness, the indefinable jelly sensations as my muscles lose their tone and paralyse, unable to function or hold me up. 

If only it was illuminated in multi coloured hues so that the agony was visible and the distress and bizarre experiences obvious to everyone else. If only. Perhaps then their might be some level of comprehension of the horror of my experience, the devastation people wreak upon me in their happy ignorance and the absolute inability I have to function or communicate effectively with anyone at all or engage with normality for even the simplest thing.

 Perhaps that is why ME is so maligned and people so persecuted and ignored. People just don't get it, but in my experience it is much worse than that. They do not want to get it. It suits them that way.

The sensations creep in silently

The sensations creep in silently
My muscles scream in response
Yet nothing is heard
Nothing visible
I am demolished to a spasming jelly
Nausea floods me  in wave upon wave
Black nothingness creeps into my vision
I feel as if I will pass out
My head is full of pressure
Piercing throbbing massive head pain
My left arm hangs inert
Stopped in its motion
Paralysed totally
My leg feels cold,
a blanket  of prickling pins and needles
Blanks out the possibility of movement
My neck  is numb
Creeping paralysis flows into
My throat and tongue
My face is palsied
My mouth no longer smiles on the left
I am pierced with illness
That incapacitates
And leaves me in tearful agony
It is unrelenting
On and on it goes
Day in day out
Hour in hour out
Moment in moment out
And I am left with no where
Within me or without me
To find  the solace
To bear it.

The Worst Day

She sobbed , for a very long time; going beyond despair, at the pain she is in, the ongoing lack of response, no matter how hard we fight, the incomprehension of professionals and neighbours, who just have no idea of the deadly agony she is in, the injustices we both suffer. The cry came from her deepest pain-wracked,paralysed, tormented ,massively deteriorated self. Yesterday was the worst day.