Here in Neverwhere..

Khaly has posted a terrific  new blog : http://cfsuntied.com/blog2/2010/09/25/neverwhere-an-homage-to-advocacy-in-the-trenches/

..which introduces the concept of "Neverwhere" :

"Neil Gaiman is one of my favorite authors. In his book “Neverwhere”, there is another whole world brewing beneath the city streets, in London Underground. People fall through the cracks and end up there, becoming forever invisible to those who walk and work and live their normal lives Aboveground. Life in Neverwhere ceases to follow the rules of normalcy, and getting through each day’s fresh serving of Hell is a cause for celebration.
So it is with this disease, which we call an invisible illness."
 
 I've posted a response on Khaly's blog.  Here though  I'd like to chart ten facts I've discovered , for myself,  about Neverwhere , this place where we struggle :

1. Everyone eventually walks away : Friends, Family, Church, Consultants.
2. No one really wants to know how bad things are.
3. No one can possibly know how bad things are, apart from the person with ME.
4. Nothing's changing : the psychiatric lobby grows increasingly powerful, the medical profession is profoundly uninterested, the State thoroughly compromised.
5. There is no one to help the most severely affected.
6. The value of ME Medical Conferences lies  in inverse proportion to their impact upon people's lives; there is an increasing unreal gulf between the science and the reality on the ground.
7. A lot of people have made a name for themselves on the Conference Circuit, they are doing okay, the psyches are doing okay, the Lightning Process practitioners are doing okay, ME  patients and carers remain invisible, ignored, negated.
8. There is not one major ME Group that is doing anything worth a dime,  for the severely affected.
9. You get hurt : you get attacked, slandered, insulted if you try , exhausted as you are, to make a difference.
10. One is terribly ALONE.
Like I say, this is my experience. I pray it is better where you are.

Comments

  1. I'm afraid it isn't any different over here in our little microcosm of neverwhere either. We, my husband with ME and myself (his carer and helpless onlooker) have become increasingly more and more isolated over the last 11 years. It isn't a healthly situation for our psyche or well being I know,but there appears to be no way out. There is just utter loneliness and isolation and of course, suffering. We once were both quite strong characters and very resourceful. When a problem emerged we would fight our way out. But with ME.............My God, prisoners in our penal system have a better time than this.
    We pray to God.....that is our only recourse.

    ReplyDelete
  2. Sorry, my last post appears so bleak. It gets to one some days.
    There is the web of course. Thank God for it. It is a small window on the world and a tiny chink of light when realising you are not the only people going through this.
    Thank you for your posts. They mean more than you will ever know in this life:-)

    ReplyDelete
  3. Greg

    You are right Khalys blog is a fantastic read and this latest post is very powerful.

    I check in here daily and although it is of no help to you, people are caring and ARE shouting for you.

    There are a couple of points you made I would like to correct:

    1. Everyone eventually walks away : Friends, Family, Church, Consultants.
    2. No one really wants to know how bad things are.

    Not everyone walks away Greg, and does not want to know how bad things are. Someone may step aside for a few moments and need to reboot some energy but that does not mean they are gone forever and have stopped caring or fighting for you both.

    This life is tough, too tough. Sometimes to be of any use to you and to others, people need to take some time in order to give their best.

    You know what they say Greg ...........

    'It's the quiet ones you have to watch' ;-)

    XX

    ReplyDelete
  4. I have a friend who makes videos and she often sends them to me, always knowing when they're needed.

    I have searched through her videos for something .....................

    http://www.youtube.com/watch?v=d0fuiMC0xp8&feature=player_embedded#!

    ReplyDelete

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