Benefits

Today I discovered the reason for calling things like Unemployment Benefit a benefit: it's because it is a donation or reward for the accomplishment of actually filling in the form, and handing all the information requested on to the government agency dealing with it. I have not claimed a benefit for so long (back when I was a student I think)) I had no idea what it was about. And when I was first diagnosed as terminal, it was the colo-rectal specialist nurse at York Hospital who filled in the forms for the Disabiity Living Allowance, so it was all taken care of behind my back. Having been self employed for so long, the form filling is even worse, requiring things like my last accounts, and (weirdly) any record of qualifications or training, plus God knows what else for both me and Sarah.



Fortunately, once again, Sarah is the organised one and was able to complete most of it without having to ask me questions i didn't know the answers too - like my "What's your name?"



It was actually our visit to Maggie, our homeopathist/White Witch where the genuine benefit of the day was to be found.



After the last week, there have been torrents of emotion in the French household, as you may well be able to imagine. I hinted on the last entry the true cost of my hospital stay only began to become apparent on the day after I came home, when Sarah was so noticeably tired, and upset. Both of us, mind you, are aware enough to know the anger is not there simply because of the stay, or anything that happened during it (even the catheter episode). Sarah is angry because I have an increasing probability of leaving her, and the graphic nature of the sight of me stuck immobilised in a hospital bed for three plus hours as I awaited a competent catheter installer was enough to help her imagination create a technicolour video in her mind's eye of future hospital stays, or days in the hospice, or, eventually, my death-bed. Add a sense of complete powerlessness she experienced in the whole situation and you are going to get someone who is bitterly angry at the injustice of it all, and the inability to just make it go away. We have both talked this week about how, in one sense, we both want it to be over and done with: if the prospects for my last few weeks are going to be a cocktail of pain and loss of dignity, as well as loss of quality of life then speed would be a gift. At the same time we both know we don't want to be separated sooner than is absolutely necessary, and want as much time together as the friends and partners we are, as well as giving myself as much time as possible with Emma, especially during this Christmas time as it may well be my last.


With such feelings, Maggie is a genuine godsend. She listens, and asks us questions about our situation, and allows us to have a third party perspective (which, I have mentioned before, comes through a "spiritual filter"), and offers a new dimension or ways of interpreting all this maelstrom of emotion, and distilling it into something clear, free of confusion. This evening, I was able to tell her the experiences of the last six to seven days have, if anything, made me more present and appreciative of the joys in front of me here and now, whilst at the same time becoming even more aware of the proximity of my death. It's a strange paradox that facing imminent death forces me into the present, and into seeing everything in a peculiarly vivid and intoxicating way, knowing again that my time witnessing the marvels of every day is again probably limited. Sarah was able to give herself some compassion, because with her high standards and expectations of herself, and others, it is very easy for her to be disappointed in what she is doing, or how she is coping. From the outside, over here where I'm looking from, I see a woman coping with remarkable resilience and humour with a set of circumstances which could bring many a lesser mortal to their knees: for thirteen months now, she has been living with my terminal diagnosis, and for two and half years has been living with my cancer. That is an exhausting and demanding period for anyone to go through - add Sarah's desire to make things as easy for me as possible, as normal for Emma as possible, and you've got the recipe for a person who could easily fall into total overwhelm as the situation becomes less and less controllable, and the chances to do things become less and less frequent.


One of the distinctions Maggie brought to the situation today which I found extremely useful was the fact we could be seen as already grieving: we are both going experiencing a time we both know (miracles notwithstanding) will result in her separation from me, and mine from her and Emma, and yet we have not allowed ourselves the time to grieve that loss. It may seem strange to think of grief before the event, but the truth is, we are all of us fully aware of the proximity of my death, and it's being brought into such sharp focus by the sudden events of this last week means we are going to be even more aware of the fact, and therefore feel a sense of profound loss, even though my death has yet to happen. We have over the last months discussed the practical aspects of both the need for me to be cared for 24/7 at some point, and the arrangements for the kind of funeral I want, but we haven't yet really started to say goodbye - obviously because we don't want to, and because it makes it all too real for us to have to consider doing so. Hence, all this emotion and high stress, because we're resisting the eventual separation, or not ready to let each other go.

Believe it or not, after that session, we both left Maggie's in a better state of mind, and a lot calmer. It seemed to give us permission to start conversations about each of us letting the other go - me, because I can't stand the thought of not growing old with Sarah as we were supposed to do, and not being around for the times when a father should be there for his daughter. It is going to be hard for me to do, that letting go and saying goodbye, and I still don't want to be doing it until the very last possible moment, but perhaps it would be less cruel to begin to openly acknowledge amongst all three of us. It still doesn't negate the possible miracle cure occuring, it just allows a potential peace to exist in the time we have left to share together, each of us knowing for ourselves that there is nothing more left to be said, no expression of love left ungiven, and no emotion about the missing years we would have all shared unexpressed. I think that is what grieving actually means, although I don't know for sure: it is the process of saying a goodbye to a person or thing of great value, and usually it can only happen after the event (death being frequently a sudden visitor). I don't think it will be an easy thing for any of us to do, but knowing we can do it if we want to, when we're ready.