TOUCH, FEEL,INTIMACY, ALL LOST
May 12th International ME Awareness Day
I feel heartbroken. I am trapped,alone, separate, numb, blank, floating in a dark space, with no connection to past or future, no memory, no words, just pain and distress, at the sheer physical discomfort.
I feel lost from my past life, lost even from my life within severe ME -the paralysis overwhelming me and shutting me down, year in, year out, so that even my moments of beauty, joy and comfort are dismembered and torn away too.
I just feel separate and blank, lost myself too, my joy, my feeling of goodness or kindness, all gone in a gyre of pain that touches every level of my being, and emptied muscles that should have walked and swum and danced and played and been used for so many years, yet instead are lost to stillness and impossibility.
Touch, feel, intimacy all lost. My eyes won’t even work to look at you and see you.
They stare, they do not register what they see,they go dark, they make words dance about, they swell, they hurt. They cannot look up then down. They cannot look in, then out. Or they will not open at all, despite my desperate need to see you.
My face palsied, my face will not smile. It feels stiff, flat, sad, empty of expression, swollen, ugly, not me anymore. Time creeps on , age creeps up on me, despite I go nowhere, see no one, do nothing.
I am irritated by everything and everyone, tortured by the slightest sound, that rips away my body from its function, that loses my mind along the way. I am not in normal land with you.
I am in a broken, fractured, terrible place. And there is no way I know to get my life back, to find my mind again in all its beauty, its continuity and flow, destroyed by every single paralysed moment. I am barely me.
I struggle to get to the outside. I try to reach out but the effort and the agony make me cross. I am shouting to breach the gap between you and me, which feels like a vast chasm to me, yet is invisible from the outside. I sound like an angry person, unable to express myself clearly - in reality I have been robbed of language, words have disappeared, turn back to front, come out misspelled, make no sense,mare trapped in the darkest valleys of my mind.
It is a massive effort to express anything at all, the pathway to my mouth has disappeared from view, the sheer force required to make my lips try to work is staggering, the intensifying pain unbearable, the physical assault on my person unbelievable.
This is only the consequence of one single, simple,taken for granted action.
I just lay down to rest, my muscles unable to hold me up any longer. How cruel is that?
How intolerable when it happens every night. How unbearable when each time you take a moment to relax, each day, you are lost in a mire of paralysis with no end, your body has floated into infinity and forgotten how to come back.
This is no ordinary place. Few go here, if any, or return so frequently.
Few know this place of torture, visited repeatedly, not only by way of simple rest or relaxation or the precious longed for sleep, that should restore and heal, yet instead destroys, no, it is forced upon me brutally, shockingly, by every noise, loud or small, simple or assaultingly repetitive and any sudden movement, cascading me into chaos, confusion, bewilderment and a screaming whirlwind of empty nothing.
I am lost in a sea of indescribable grief at the losses that have mounted up over decades and go by unseen, unacknowledged and unrecognised by the world and the people in it, whilst everything I hold precious, crumbles before me into destructive, whirling blankness, yet again and my body becomes so still it looks like death.