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   

























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