Stonebird

  STONEBIRD https://www.youtube.com/watch?v=xffjzaBi1mA She sits silently waiting Unable to move She stares into the distance Her eyes all throbbing in pain If she had wings Then they’d be closed If she had wings Then they'd be folded She's unable to talk She's unable to focus The pain burns her whole face Her muscles have ceased to function If she had wings Then they’d be closed If she had wings Then they'd be folded Flight is an impossible dream for her A memory of another life time Her grief is indescribable So many untold losses If she had wings Then they’d be closed If she had wings Then they'd be folded (Words and Music Greg Crowhurst 2024) https://stonebird.co.uk

  SEVERE ME, YOUR WORSE NIGHTMARE I want you to think of the worst illness you have ever had Remember how dreadfully ill you felt How everything you normally did suddenly became totally unmanageable Perhaps your head hurt so bad that you had to lay in bed all day to cope Perhaps you felt or were utterly sick and food made you feel even worse Perhaps you were dizzy, off balance and disorientated so that you had to sit or lie down or fall over Perhaps you had an operation and felt weak, groggy and sore. You must have felt out of synch with the world and unable to participate in it like you normally would Now I want you to add pain Pain that spreads all over your body Not just one sort of pain but pain that throbs , pain that burns, pain that itches and screams at you pain that crawls up your skin and invades every millimetre of your body: Your nose, your eyebrows, your eyeballs,your ears, your scalp, your neck, your front, your back,your toes, even the soles of your feet Everything e

For thirty one years I have struggled to answer this: How can people not see? Or know? Or hear? Or empathise? Or reach out to genuinely comprehend the most ill? Surely family, neighbours, friends have some idea of the ongoing suffering? Surely medical and other professionals are aware on some level, of the ongoing neglect and profound isolation? Surely there are some who really care, who want to help, who want to reach out? What a difference just one genuinely concerned, aware, interested, committed individual, can make.  

  Sometimes I am amazed at how I cope, get through each day with Linda; her suffering is so intense. I am so relatively helpless to relieve it. However I have learned the power of presence and how that can lead to a place of peace : Once I let go of trying. Once I let go of my far too fragile ego. Once I let go of fear, of despair and flow. Just be. The mystics often refer to how God is found simplicity,in being still. Yes, that has been my great learning, these many years. How in letting go, you fly.

On the radio this morning they were talking about how there is ABSOLUTELY NO NHS PROVISION FOR SEVERE ME. In what other disease, Maeve Boothby-O'Neill’s father asked, would zero provision be tolerated? In what other serious physical disease, I want to shout, would baseless, psychiatric lie after lie be tolerated as truth? In what other serious physical disease would psychiatry be allowed to get away for decades with inflicting great , lasting and even deadly harm upon the most sick and vulnerable ? In what other serious physical disease would sufferers, paralysed, in agony, unable to tolerate sound, light, touch, movement, chemicals, be left with nothing whatsoever, not even respect? In what other serious physical disease would those who have it, simply not be believed? In what other serious physical disease , almost 70 years after it was identified, would a complete lack of treatment and not even a hope of a cure, be tolerated? For over 31 years, I the carer, have had to witness m

  THE COMMITMENT TO CARE https://stonebird.co.uk/morenotes/index.html The poster below might seem simple, but is much, much harder in practice. The skills required to care for someone with massive complex disability and severe symptoms are not at all easy. There are so many factors involved in even the simplest task. Can the person cope with it? What is involved? What are the potential issues ? For someone who can do so much more, it can be very difficult to just do what only what specifically is asked and not the slightest bit more. This takes immense awareness, genuine empathy and understanding of the other person’s reality -which you cannot know, you have to learn and keep on learning it. I cannot emphasise enough how important it is, to maintain focus on the person and the task required. The more you can develop awareness, the safer the person is going to be, from potential negative impacts. Partnership and understanding, learning from your mistakes and a combined understandi