Someone recently asked me if I was 'OK' because I seemed a 'bit up and down at the moment'. They were completely genuine in their question and I know it came from a place of caring.
Their choice of words made me smile inwardly in a sort of ironic way as the title of this blog is no accident; every stage of this journey has taken us up and down, like a twisted game of snakes and ladders.
In the early phases you career between the hope of a flickered eyelid and the terror of the 'when to withdraw treatment' conversations. As time moves on you are buffeted between the joy of small victories like the first few sips of thickened water and the pain of accepting what is lost. This develops into a focus on how much rather than if at all and still you undulate along the ups and downs, grateful to still be on the journey.
In a weird 'if I knew then what I know now' way the more acute, in-patient phase is not so bad; you have tangible, concrete things to focus on and a place to spend your hope. You can clearly chart the improvements and have no real responsibility for what happens in that environment. If it's not working, then 'they're' doing something wrong. The highs and lows are more immediate and visceral, but at least you can take comfort from knowing hope is likely to go up again soon.
No, the worst ups and downs are the ones that are so imperceptible as to hardly register. As progress slows and you begin to establish the new 'normal', everyday feels like an unremitting, featureless landscape and you find yourself compensating by experiencing every tiny thing, whether good or bad, to it's extreme, a bit like voluntary bi-polar. Trying to force the hope to do something, anything.
Add to this the constant feeling of failure you have from not being able to help, understand, mend it, or do the right thing in any situation and you start to feel as though you are truly running on empty. I have believed that I reached this point many times over the last 17 months only to be able to thankfully scrape some more reserves off the bottom of the barrel, I am sure I will do so again and be rewarded by an upward tilt soon.
So, if I seem a bit up and down it is because that is the nature of brain injury whatever the stage; hope goes up...hope goes down.