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Monday, 7 November 2011


My world has become more and more insular, more separate and the outside world more alien. Partly it has been a coping mechanism, partly it has become the natural rhythm - or should I say stutter - of my life but mostly there has been no choice.

With my world getting smaller and smaller, I have spent too much time journeying inwards unable to journey outwards. I have always thrived on interactions with others, socialising, mingling, bantering and making connections. But I am no longer adept at it and like an unenthusiastic guest at a dinner part I feel uninterested and unable to muster the energy to engage. The exhaustion and pain make everything baffling and nonsensical. And the loss of vocabulary combined with my loss of cognitive function and short term memory problems make me feel clumsily inarticulate, uninteresting and surreal. And with the loss of that interaction, that affection, that laughter, that stimulation, my heart muscle has seized up into a painful knot.

I am a perfectionist and I have always been articulate, a great conversationalist, gregarious and sensitive to others. Now I struggle with how to balance that through the frustration of this illness and my severe physical restraints. And with the loss of my sense of self, I have inadvertently become stingy. In the past I could have said with all honesty, completely unflinchingly that I am a great friend with a really generous spirit. But that is not true any more. I am not a terrible friend, but I am not what I was. Visiting so often with death last year changed me, marked me, and made me darker. I saw the truth of people without the romance of life in the way, and many let me down and broke my heart. So I have become more selfish, less tolerant and markedly less generous with my heart and emotional energy.

For a long time I have felt unlike me, lost and foreign. And I realise now that it is not just illness that is robbing me of myself, but that it is me who has locked me in the basement of my heart unable to communicate with the world. It is me that is keeping me separate. And by being so inflexible with my expectations of myself and by trying to protect myself I am hurting myself. By closing off myself and my heart, I may protect myself from heartbreak, but I don't let anyone or anything else in.

One of my biggest fears with this illness has always been that I would become a self involved twat. And by spending so much time alone I have become a little egocentric, because I needed to to survive, but also without outside influence perception becomes skewed. The inward journey has embittered me with struggle, hardened my heart, closed me off and made me what I feared... a bit of a self involved tight arse twat (T.A.T.).

So for those who managed to get through the minefield in the last year or so, thank you for persisting you brave little soldiers.  And for those whom I love, and yet I have not been as available to, things will be different. I cannot promise I will be as I was before, too much has happened and illness makes consistency near impossible, but I will try to give you the love you give me. You deserve it.


  1. you have just been trying to survive the only way you knew how...we open our hearts as much as we can afford to at any time, with all the unique history that makes us 'us' contributing to how much we can do that at a particular point. i would love to see your beautiful heart feeling safe to open even further, but i have never ever seen you as T.A.T - in spit of all you have had to deal with. XXOO

  2. Marzi, there's definitely an off beat rhythm to living with a chronic illness. There's an ebb and flow which sometimes requires us to become more insular, to contract within ourselves. And that's okay! It's not a failure, but an honoring of what you, the entirety of you, need at the time. Society allows us to grieve other losses and there's a grieving process involved in learning to live with chronic illness as well. It's inherently difficult to learn to redefine ourselves and our place in life and I'm glad that you're remembering to share some of that generous spirit with yourself.

  3. I agree with with the previous comment. Living with chronic illness is like moving to another country where everything is done differently and sometimes all you can do is send (the equivalent of) postcards, that say something but really can't begin to describe how it is, unless the person has been there themselves. I have had me/cfs for 25 years and it seems to me that you manage to capture something of the essence. One is obliged to take on the mantle of introversion, whether or not. But we can learn from the natural introvert, I think, to learn what depletes us - and find new sources for renewal of inner substance.

  4. K - thanks beautiful, it is easier to be open with my sicklings, they are on the same journey xoxo

    Cynthia - I think the struggle has and always will be that there is no consistency. Death comes chasing you down, then slowly you recover before it is round two. xo

    Reading the signs - That I think is what is hardest for me, being an extrovert and yet being unable to interact as before. You are right though it is like living in a foreign country, there is so much between me and the 'real' world. xo

  5. I can relate to this Marzi, but I don't think it makes you a T.A.T you do what you need to in order to survive. I thought of something really thoughtful and profound last night after I read it but was too shattered to post. Should have written it down because those thoughts never stay long in this worn out head of mine. So I agree with all of the above. Glad you are in my country anyhow, but hope one day this is a foreign country.

  6. I've felt that painful social alienation because of the cognitive dysfunction that rendered me voiceless (no exaggeration!). But I realised eventually that my verbal inexpressiveness needn't abort all social connection. I converse differently now, less individualistically (I'm not assuming you were individualistic, Marzi). I feed off other people's energy, rely on what they say to stimulate my thoughts AND they are forced to concentrate more deeply, and even intuit, my ill-expressed ideas. It makes for a more interactive, communal and intimate social gathering.

    And conversation with me is slower now, punctuated with (mentally blank) pauses, but I love the pauses, the fertile silences -- I love the rhythmic, relaxed pace they establish.

    Also, often people want to interact with a person not for their sophisticated conversation, but because of the strong, bright energy they emanate. That energy actually contributes to the conversation in a strange way -- you so obviously possess this kind of strong energy, Marzi. Love Lilith XOXO


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