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Thursday, 19 January 2012

My record player is emo

We live in a world where we are constantly prompted with subconscious social markers and clues in order to help us behave appropriately and to know what to expect. When you watch a TV show, whether you are aware or not, you will know by the way the camera moves, what type of scene is about to take place. If the camera is watching someone through the branches of a tree you will know that character is being spied on, but if the camera moves slowly from behind the tree and just watches the character from a distance, you will know the character is having a pensive moment and the imagery suggests they are given space.

When you watch a movie, the music or sound will communicate what type of emotion they are prompting from you. The melancholy music or dramatic sound effects getting you ready for the emotion of the upcoming scene. Those of us with severe CFS/ME have a sound-track of atmospheric melancholy music that changes in moments to vintage comedy capers music to coincide with our daily slapstick routine or shifts to threatening thrumming bass as we near death, only slowing down to turn back to melancholy.

There is not often hopeful music, or even a camera panning to the sky to say goodbye, instead the camera discreetly backs out of the room, us in centre screen skin looking translucent white, eyes blackened, lying heavily in bed surrounded by medication having completely given up the pretence of a pretty room for the practical needs of survival. And maybe there is a script in the end credits describing our continuing fight and running statistics on the truth about death and severity of CFS/ME.

The psychology of CFS/ME is not like other illnesses. We do not get given a package of information about statistics and treatment options, the likelihood of survival and how to better our chance to achieve that nor do we get to look forward to the sweet relief of death and the acceptance of having to say goodbye. We do not wish for death, but we wish for closure, for escape from the torture of uncertainty. Our ultimate wish would be to hear hopeful music, see a montage of us over the years in various states of decline and then some miraculous treatment turns us around and you get to see us building up our strength and working to get our lives back.

Unfortunately for most, that is not what our experience is. And what I've realised is I've grown tired of waiting to hear the triumphant music. That I hate my emo record player and it's evil addiction to dark whining notes. What I wish to do is change it, but the ceaselessly moving floor and my inability to walk properly makes it impossible for now.

So I live my life in intervals, small snatches of clarity, tiny moments of balance very rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the psychology of CFS/ME. We struggle to balance on an undulating floor that moves to no discernible rhythm, unwillingly swaying to the atmospheric melancholy siren and wishing to hear a joyous symphony.


  1. Beautifully written Marzi. xxx

    Pretty rooms are overrated ;) .

  2. living life in the interesting idea. amazed you are able to write today marzi - glad you were able to do this for you. XXOO

  3. Thanks Sarah. Pretty rooms are definitely overrated for us <3

    Sweet Kae - It was a few weeks old, just waiting for clarity that never came, so I threw caution to the wind and published it anyway xo

  4. If this is how you write without clarity, I shutter to think how lovely you write on the good days! What a beautiful voice you have, and never give up hope. You have so much of that loveliness and truth to offer the world. XO

  5. Beautiful Marzi, reminds me of my room with all the medications and so forth. Music is very powerful and you have so accurately described it's uses here in your Blog. I often use music to convey how I'm feeling when words fail me or I just don't feeel like words are enough....
    Jodi xoxoxox

  6. sometimes when the melancholy is so daunting the "vintage comedy capers music" can be a welcomed relief.
    such colorful writing marzi. giving words to convey the realities of severe ME. you are a blessing to all you touch. xx


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