Thursday, November 30, 2006

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 cafĂ© 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.


Anonymous said...

Not been in for a wee whiley...was thinking of you!
I LOVE your philosophy cos you are SO right (((HUGS)))

Keep yer fighting spirit and let there blow a gusty breeze to dispell those lurking mists revealing your pink path ahead!;0)

I await your thoughts on yesterday's news...

Cat x

Anonymous said...

Am happy to read this post. Hope today's a good day for you. x

Simba said...

I watched Touching The Void on Saturday. Have you seen it? If not, you should. Joe reminded me of you. Twenty minute targets got him safely back to camp. A seemingly imposible feat :)

Anonymous said...

Once again Emily I am in awe of your writing skills ,reading your blogg is a pleasure.I was speaking about you to my cf nurse (were your ears burning ) she had never heard of a blogg ,I told her how what you write can help other young people with cf as you put what they are probably feeling too into words we all can understand .As always thinking of you keep your spirits up and keep well.
love Anne M x

Anonymous said...

Hey Babe, don't ever forget our wee motto 'dum spiro spero'. Take care.

Jax xx

Anonymous said...

I'm glad you're feeling a bit better about things hon. We're all behind you and always thinking of you. It's very understandable that you have off days, like everyone so don't be too hard on yourself. Lots and lots of love x

Catherine Burns (Bermuda) said...

Wow, just read your blogg after seeing the headlines today in the Times Online. Just wanted to say that I love your positivity and how you see the excitement in everyday life. So many people miss it, especially the fully health, who I guess haven't had their lives put into perspective as you've had. But to be one of the few who really gets life, who unleashes their inner-5-year-old at the thought of Christmas and anything sparkly - that's a rare gift. I'm English but living in Bermuda, so your message is spreading far and wide! I'll keep my fingers crossed for you re that transplant. You've just made me sign the organ donation card that has, till now, been sitting in my drawer :-)


Anonymous said...

"whilst there is uncertainty there is hope"

yes. always.

be-au-tifully put as usual :)

hanging on to it with you chick,
rachel xxx