You decide.....



"She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....."

Someone posted this comment  in relation to our YouTube video :




Yesterday Linda  told me how the pain seems to stretch to about 4 inches outside her body. Her reality is  horrific , utterly tormenting; Linda lives in intense suffering; the  commentator is right.


....but kill herself ??


We sit together, Linda and I, her in her suffering , me in my inability to take away the pain and my struggling to think what to do , after sitting beside her for  18 years of ever-deepening , throbbing agony.


And maybe we notice a daffodil, or a bud . Often a bird, the robin, the hilarious blue-tits.


Or maybe a neighbour starts  sweeping their path, a child gets out a ball and Linda's symptoms go into overdrive, the peace is shattered and there is no shelter; getting harder and harder  to find refuge from an increasingly hostile world. Who has a clue, I wonder,  what a torture sound sensitivity is to the Severe ME Sufferer ??? And the day collapses..


Still we live our life. We believe passionately in the mystery we are caught up in, so vast, so radiant. Linda has learned how to live in the spaces between the raging symptoms, I have learned something about acceptance and something of the Heart of Love. It is prayer that liberates us and love that guides us.


In any one moment you can choose despair, or you can choose life. We choose life. You can live life in fear and negativity or you can live life to the full.


In the moment, could anyone take more delight in the  beauty of a daffodil than we do ? In a life-time you could never , never drink it in.  Our journey has brought us here.


Where we fight with a passion any suggestion of euthanasia; the death-making culture  that dominates  the history of disability and is gaining extraordinary ground these days.  Where we care enormously  about what is going on. Where we choose to take a stand, especially  for the truth of ME. That is why the videos are up there.


Me; I have never felt more alive.


Or more angry. With every fiber of my being I fight for a cure for  Linda, up  against all the injustice, the institutional prejudice, the outrageous  clinical vacuum.


Her , me and the daffodils ;  perfect.


When I was growing up there was a song that  I have carried with me all this time.  A few years ago I brought a battered, stained,  framed copy of the words at a market stall :


You are a child of the universe, no less than the trees and
          the stars; you have a right to be here.                                                                     - Desiderata   
























Comments

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