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It happens to be the National Day of Mourning for the Jewish People and there is a lot of despair in the air and in the words we have been saying. But for myself, I refuse to.
Despair is the complete loss or absence of hope and despite my condition continuing to progress and the statistics I am not nearly at that place.
I won’t write about the wonderful family support I have or the community and friends I am lucky enough to possess but I will talk about my mindset.
I may be forgiven for being a glass half full person but the simple fact is that I enjoy life. I laugh with my carer as I fall on him at physio, I have a great sleep on the couch when my mum comes to visit and I get ridiculous amusement from a completely stupid dancing chicken I bought. Who could possibly despair.
From a chess game with a friend to spending Tuesdays with my sister and eating my brother in law’s increasingly spicy salmon curry (I am sure it is a test), the world is too full of things that make me happy and proud.
It will get worse and I will be unable to enjoy some of these things more and more but when your world has already shrunken to the point that you can hardly leave your four walls and a dancing chicken still makes you laugh it represents resilience in the extreme.
I have decided to see life as a Zero-Plus World not a One-Minus world. Every positive thing I am able to do, every event I am somehow able to attend will be a Zero-Plus. I have stopped measuring my life against what I can no longer do. My baseline is now zero expectation. Every success becomes a bonus rather than another reminder of loss. I have no expectation (Zero) and will see each thing I am able to do as a Plus, rather than feeling constantly like I am failing by cancelling this, that or the other.
Of course, I want a different life – of course I want to drive, be free to travel and actually do real things to help people – but that is just not the plan for me and I have to accept it.
I am prepared to say that I have left the world a wonderful family set up beautifully for the future and I really must look at life as all positives now.
So – no despair from me. There will be moments of sadness and anger – and they will probably be often. But no despair. Hope is important and I still have lots to hope and live for.
