Thursday, 3 April 2014
Despite the fact that I live with the reality of death - and no matter how much I have done to prepare for what my wishes are when the moment comes - as these days drag on I don't exactly spend every waking moment thinking things are going to just suddenly stop. For one thing, and after all the years of punishment - my heart still keeps going as my nurses have reiterated many times. But at night lately, something in my subconscious is obviously fixated on the prospect of leaving this mortal coil. I wouldn't exactly call them dreams - more like nightmares that seem to go on and on lately...so much so that I often dread when night-time is approaching. They follow pretty similar themes. For example - I hear people in our house, family and friends from far and near, having conversations together and I find myself trying to get to them - or calling out to them, but no one can hear me and I am unable to be part of what is going on. I guess in the night I can visualize what it will be like not to be here - not to be part of the life I once knew. I have had so many predictions of how long this could go on - and none of them have come to fruition. As I continue to be told I am one of less than a handful of patients who have this particular blend of issues - so everything is a guess and speculation - no matter how much parts of my body are shutting down and my energy fades more and more each day - I continue to worry about how this will go from here. I am sure anyone in my position would understand these questions - how the waiting can be excruciating in ways I can't convey - not just for me but for the people who love me. So after many weeks of being away from work, we have decided it is better that Kirk go back to work for now as there is nothing more that we can do but wait - and the reality is his presence here - or that of my family will not prevent whatever is to come. More than that, it is long overdue that he have some respite from this space and what I have left to offer at this point. It is the right thing to do and his co-workers have been miraculously understanding and generous for the time he has already taken. So things will change again...something that has been constant in this process and we are ready as we can be for things to go back to what they were - for however long this lasts. I still have the support of my family and care providers - so it is not exactly like I am completely alone. So while I am grateful for everything he has given - it is time for him to rejoin his own life - do the job he loves and be surrounded by the people and things that make him happy.