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.
