Who wants to know ?

There is a church just across the road , within one mile of us there are at least four other churches - and  a National Shrine, for goodness sake, bustling;  there's also several convents of nuns.  


 A community of priests , what, half a street  away. Come to think of it, there's a priest who lives just behind us, over the garden wall there.


We've got  Crosses  on every corner  and today you will be able to hear scared music from our back garden.


This Easter, not one Christian in this holy  place  has reached out to Linda. The  neighbours say hello to me, but no one asks about Linda. As far as the Churches here go, the National Shrine, the convents, the priests,this profoundly sick, disabled, woman in total agony , is not on their radar.


I am out of my mind worried about Linda ; I have not been well myself recently. It's a struggle.


Easter ;  the greatest "feast" day of the Christian Church. Across the road, over the fields ,  bells will be rung, candles lit, you won't be able to park anywhere ; today's  a giant hallelujah.


The  pain-wracked woman, my wife, will fight to get through this day, as she does every day. With dwindling resources, I am with her.


As I sip my coffee, this early morning, I wonder can I hear  Christ's parched voice  ? Is he asking, like me, how did it all go so wrong ?

Comments

  1. JoanneApril 8, 2012 at 1:37 AM

    Greg so sorry to hear you are so isolated with this dreadful illness and Linda is in such pain.
    Why don't you try the Breakspear in Hemel Hempstead and see if they can do some investagatory testing. They do many tests that the NHS don't bother to do and although it is expensive they have helped many people with ME/CFS.
    It is not a hospital I have personal experience of but I am in touch with many patients who have been helped by them and I have met several of their doctors at Medical conferences.
    The countess of Mar was helped enormously by them and speaks very highly of their work.
    Best wishes to you both, it is time God intervened and allowed good science to be done and listened to when it has been done to help so many who suffer.

    ReplyDelete
  2. Holy WayApril 8, 2012 at 2:29 AM

    Thanks so much Joanne,

    Unfortunately we had a very bad experience with the Breakspear; Linda is badly deteriorated now.

    Our very best wishes ,

    Happy Easter,

    Greg

    ReplyDelete
  3. RoseApril 8, 2012 at 10:47 AM

    Dear Greg

    Have you thought of posting this in your local paper, or send it to the actual Churches. I am not of the same faith but maybe there is a service on the radio or tv not the same but may be of some help. Best wishes to you both.
    Rose
    ( also have M.E)

    ReplyDelete
  4. Reading the SignsApril 11, 2012 at 12:56 PM

    I am listening. Will buy your book.

    ReplyDelete
  5. Holy WayApril 11, 2012 at 1:15 PM

    Bless you , thanks that's really uplifting.

    XGreg

    ReplyDelete
  6. cinderkeysApril 18, 2012 at 12:51 AM

    As an atheist, I'm sad and a little surprised. Somehow I thought that this was what religion did well -- rallied supporters for people who needed it.

    I'm guessing you already tried enlisting their help. What happened when you did?

    ReplyDelete

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