On being told you are a waste of space.


When the builder, next door, told me he "didn't give a shit", about my wife's noise sensitivity, it shouldn't have come as a shock when he also told me that I am a"fucking waste of space".

But he is not the only one to have told me that, either explicitly or implicitly. Not that he knows a thing about me.

It doesn't take much figuring out to understand how he and the others are simply voicing the message of the times; that this is the neoliberal climate we live in, that this is the by rote condemnation of the sick, the disabled and by implication, those of us who care for them. 

That this is exactly how death-making governments operate.

There is little or no status in being a carer, if you are sick, disabled, you are classified in the public's mind as an unworthy scrounger, as opposed to, say, the hard-working, tax-paying builder; those who have proper jobs, who get up in the morning and get on with their lives.

How dare us burdens on the state get in their way.

Still, it was a shock, a breaking of innocence, even at my age, child of the 60's, a life-long believer in people, that they inherently care, to have that builder state the obvious.

Our experience over 25 years of illness and profound disability, sadly, is that in fact very few, if any care. Our isolation is almost complete.

The great pretence is that the person does not exist.

So you deal with your overwhelming anger and rage, completely justified. Even so, you still find yourself suddenly wide awake at four in the morning, trying, with your shattered mind and  heart, not to take it on.

Comments

  1. UnknownJune 21, 2016 at 6:30 AM

    How awful an experience,but hard as it is,remember this tells you more about that man than you or Linda.Karma will prevail as the Universe must balance itself out...what one gives out,you ultimately get back....I feel your pain,in every sense.The builder will leave and as ever your amazing strength will see you through.Think of the kindnesses which good people have shown you. Xx

    ReplyDelete
    Replies
    1. Holy WayJune 28, 2016 at 1:31 AM

      Dear Maureen, you have shown us that people do care, are incredibly kind. Your recent reaching out, your love,your ongoing support and concern, means the world to me xxxxx

      Delete
    2. Holy WayJune 28, 2016 at 1:31 AM

      Dear Maureen, you have shown us that people do care, are incredibly kind. Your recent reaching out, your love,your ongoing support and concern, means the world to me xxxxx

      Delete
  2. Willow RavenswoodJune 27, 2016 at 4:01 PM

    In my experience over 30 years of being debilitated by M.E. the greatest pain is not the physical but the beating the heart takes. It makes me acutely aware of the value of human kindness and the hell we inhabit in it's absence.

    ReplyDelete
    Replies
    1. Holy WayJune 28, 2016 at 1:26 AM

      Absolutely -"the beating the heart takes", how beautifully expressed. Thank you so much Willo.

      Delete
  3. UnknownJune 28, 2016 at 11:58 PM

    Willo so profound what you said.That wisdom comes from the searing heat of the suffering of this vile illness for decades.....just yesterday,I experienced that "beating the heart takes"but then the kindness which gets us through another day...I wish you,Linda&Greg and all ME sufferers more kindness ......especially from the medical profession in the form of proper research,care then a cure.

    ReplyDelete

Post a Comment

Popular posts from this blog

The psychiatric abuse of Children with ME

The  psychiatric abuse   of Children with ME : some notes from the literature Greg Crowhurst 19 th August 2011 It is not that easy gathering together the information on this subject; yet it is so important ! The quotes below are   the result of a lengthy   search I have conducted. All the material is publically available, I have tried to follow  copyright restrictions where stated. 1. “The number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year. Fifteen year old Leanne Murray has severe ME and struggles with a range of unpredictable symptoms of ME including nausea, muscle pains, post exertion fatigue and light sensitivity.  “ When Lorraine took her to hospital with chest pains, doctors said there was nothing they could do.  Leanne was sent home with no treatment and the consultant reported her mum to social services.   A week later a social worker arrived on their doorstep in Coatbrid
Read more

Risk Assessment for interactions with people with Severe and Very Severe ME/CFS -an essential and important inclusion in the new NICE Guidelines

Image
  Stonebird welcomes the inclusion in the New NICE guidelines of the need for a Risk Assessment for interactions with people with Severe and Very Severe ME/CFS.  Having spoken up about and raised awareness of  the importance of this issue for a very long time, we are particularly pleased to see that this has been included as standard procedure. We hope it will help to protect people. This is what we have to say about RISK Assessment: RISK ASSESSMENT IN SEVERE/VERY SEVERE ME  https://stonebird.co.uk/morenotes/index.html It is a massive risk for anyone diagnosed with Severe/Very Severe ME to let any professional into their life. Very Severe ME is particularly so outside anyone's normal experience that it is extremely hard to comprehend or understand or know how to safely engage with the person.  Our (painful) experience, over decades, has taught us the importance of making sure that professionals behave safely.  Information, therefore, should be provided to the person concerning the
Read more