I wrote this yesterday but was somewhat preoccupied last night with the news headlines (which I will comment more on at a later date) and forgot to post it.
Much calmer now, and have been chewing it all over in a more rational manner (new improved rationality aided by multitude of helping hands offered out at a seconds notice, and a shopping trip followed by a rather nice steak baguette at café rouge in the sparkling winter sunshine that showed itself today). I think that I need to realign my perspective slightly again – for me, when something begins to become overpoweringly difficult, it helps to change your angle of attack slightly.
Perhaps a cheats way to ensure you feel more victorious but when things are out of your control your perspective is the one thing you can keep a hand on. Essentially there is too much focus on transplant right now. This is understandable, as no matter how determined I am to enjoy it, life is pretty tough now and when struggling I focus on the easiest escape route, which is the possibility of a transplant and of healthy functioning lungs. However this focus is also why I am struggling so much when I see that possibility begin to wane. It is much harder to contemplate the idea of no life-saving transplant and that CF might take me and my lungs down fighting, let alone begin to make peace with that idea.
Interestingly this is the same old quandary I spoke about exactly a year ago in my interview in the Times. Such a dichotomy; it is what propels me to keep going yet is the source of endless frustration and angst. I like writing about these feelings and different thought patterns as it allows me to look at them from a slightly detached perspective and then I find them more interesting than terrifying. It is a tricky business really. I want to keep fighting; I know that and am 100% clear on that fact. In my mind, the thing that gives me most motivation is having an aim which you are fighting towards. For me personally, transplant is that aim. However at present, this aim (due to it being merely a possibility) is actually creating problems as I am too focused on the end goal.
Perhaps it is like running a marathon (clearly I am hypothesising here as I have no experience in this area) I would imagine that when doing so, it is important to create mini targets and goals to aim towards, as focusing on the finish might make reaching it seem all the more implausible. After all what is the point of having a goal if you are so blind sighted by it that you can no longer appreciate the little milestones you encounter? And there is so much too look forward to today, tomorrow and in the near future, Christmas festivities being just one huge rainbow on the horizon (sparkles, glitter, fairly lights and presents = Emily-heaven).
To go completely off the deep end in a vaguely philosophical manner, what is there in life that is certain? Nothing really, only today and so that is what must be focused on as no amount of howling/pouting/bribing with sweetiebobble decked cupcakes will change what will or will not be (I am sure I have said that somewhere on here before, I should really listen to my own advice before hysterically blogging). The 50/50 chance of getting a transplant creates a multitude of paths, and I don’t know which one I will head down (though I will do my utmost to go the way I want to go) but then again who in life really does know where they are headed or what will be happening this time next year? It all seems a bit less frightening when I remind myself of the fact that nothing is certain. Whilst there is uncertainty there is hope. Whilst there is hope I will hang onto it and try to use it to keep me focused on the here and now.