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Saturday, 26 November 2011

His name is ME

I must warn you, there is no escaping him. He comes to you like a jaunty salesman, using sleight of hand to sell you lies. When he asks you what you hope for, what you dream of, don't answer. He will not give them to you, he will take them from you. He is a dream eater, a hope stealer, a futures thief.

Imagine the things you love to do, the simple things, the fun things, the silly things. Now imagine the things you hope to do, big and small. Just like that he tricked you into thinking of them, and now he has stolen them from you. Gorged himself like a junkie on your hopes and dreams, so he is fat and satiated and you will go mad with the loss.

From now on you cannot travel overseas or go camping, you cannot go out to the pub or dancing, you cannot go shopping or to picnics, you cannot go to the movies or to a salon, you cannot play sport or exercise, you cannot cook dinner or drive to get takeaway, you cannot garden or even compost, you cannot walk your dog or clean your house, you cannot drive or some days walk.  And for the future, you cannot work or study, you do not have financial freedom, the pension is sparsely enough to allow you dignity, you cannot have children and you may not ever find love, you cannot own a house or build a house, you cannot buy a car new or old, you cannot live where you want, do what you want or be who you want to be. You cannot do anything by yourself. Rarely, if you are lucky you might get to do one of the can-nots but it will be at the whim of others, you cannot choose anything for yourself.

He tricked you, and now until you die your living will be like dying. But his sleight of hand is like artistry and while you live with that horror, it will be invisible to the outside eye. Occasionally your hopes will be raised when you think a discerning eye has seen through his trickery, and then you will deflate with the realisation that they have not. His mark is indelible, and he has pulled a heist so complicated you would admire his genius were you not the victim. Because while you suffer the withdrawal of your future, you will also be wracked with pain, exhausted beyond comprehension and barraged with symptoms so rare others will wonder if they are makings of your own creation. You would laugh at his audacity at the ridiculousness of his plan, but it is working. You are alone, you are close to death, just close enough to prolong the torture, not so close to death that there is relief. And yet no one sees you, no one is watching and slowly they forget you. He has alienated you so effectively that your voice is no longer heard. He has made you so small, taken everything from you, left you weak and desperate without any hope for the future.

He has the last laugh. Because when you try to tell people his name, they will look at you with incredulity. His name is ME.   


  1. although i live with him - you have captured in words what it feels like. too many losses too much pain.
    another great post marzi. hugs from afar.

  2. Oh dear Marzi, you've sharply captured that common dilemma of ME: how much hope can we safely allow ourselves? Will we be left bereft and heartbroken if we dare to dream of future joys? of a future?

    You are always so penetratingly honest about the emotional pain of this illness. Brave woman, you are, to not run from the facing the reality of the inexhaustible losses of ME. And it is especially awful being too ill to even process the horror that's befallen us.

    You're a voice for all of us, Marzi, a beautiful voice. You are loved, and so deeply appreciated and valued -- it's not enough a fair exchange for what you've lost, but I hope it brings you some solace, sweet Marzipan.

    Please know how much your sharp insights help me. I just wish you didn't have to suffer so much for those insights. Lilith XOXOXO

  3. Love you Marzi. Keep strong. One day we will defeat him! xo Kate

  4. We'll get the better of him eventually. Even when you feel alone, I hope you know that you aren't, we are all there with you and wishing you well. ((hugs))

    I think you've captured the complete ridiculousness of this disease very well with your no holds barred description. A very poignant post.


  5. 'your living will be like dying' - so well said. i know you feel he has taken your brain from you so often too, but when you write like this i hope you can see what he hasn't been able to take.

    too true about the feeling of being tricked into revealing your hand, your dreams, so that he can take them away. it does feel exactly like waging war with an invisible enemy...i guess because we are.


  6. I have read my life on your post, so beautifully and truthfully expressed , my desires and aims not achieved so heartbreaking my list of can not,s are just the same. this invisible enemy is a thief of all the great things in all of us. But your, our fighting spirits join together in an army to unite and fight and dig deep and find some special gift within to create , to share, to touch all of us out there. ME may win battles but not the war. I love your blog ,how you have set it out. Be proud you won. When I am able I will also have a blog. Reading them has reknewed my life. Big Hug oxox Suzanne Mitton (Suzie)

  7. Your not alone, your being watched and not being forgotten, you have to keep telling yourself that marz. Keep your head up, nige x

  8. This is a fresh take - a powerful conception (ha, in his despite). I have seen him described variously - always a he. My own apprehension of him is a kind of Stasi official (the kind depicted in the film The Lives of Others) who monitors my every move.

  9. December 9 blog post written with you and others (the singers) in mind.


    Reading the signs, thank you, it was beautiful xoxoxoxooxxoxoxoxo

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  12. Yes this is exactly what it is like Marzi. Thank you for writing this. Jodi xoxox


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