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.