Saturday, May 20, 2006

Chris, aka Clockwatcher passed away this morning, 10 days after his transplant.

It has been a difficult and sad week for the CF community with a few people going through critical patches and two deaths. My thoughts are first and foremost with their families and friends at this sad and trying time.

My msn name at the moment is “stop the ride, I want to get off.” I am sure everyone has felt this at some time or another, in relation to a certain aspect of their life. That life is hurtling forward and there is nothing you can do to slow it down or to control the direction.

For some reason I feel the need to justify (more to myself rather than anyone in particular) my wishes to undergo transplant. It is a risky operation, and a big one. It is not a cure. They explain all these things when you go for assessment. But for me, it is vital that I am listed for it, that I then have this sort of suspended half life whilst I wait, and that I face those risks head on. For one central reason really and that is that I have to have something to aim towards and fight towards. I always do, that is why I set myself strange nonsensical tasks and embark on scatterbrained projects, because I need an aim to drive me forward. I need to focus on that transplant, and the possibilities which follow, in order to find strength when things do get a bit tough. And that is what works for me personally.

Either way, I think when receiving the sad news of someone’s passing, you should always take one specific thing from it: that you are still here. And I am. I am still here, still able to see friends, to talk and to laugh and to live. And whilst you cant change the past, and you cant predict tomorrow, you can take today and grab it and dance around a lot until you are thoroughly exhausted, (both in energy and in money if necessary!).

I am going to a quiz tonight with my family. We are meeting some family friends there, and we will have a great time and a good laugh and I will come home shattered and ready to sleep! Part of me doesn’t want to go out, I want to sit quietly and reflect and think and ponder my own future. But I will go and I will do so in memory and respect of those who have lost their fight, because I can and I should.


Anonymous said...

You can, and you should. Live life. That's all we can do. When you have a crap day, have a crap day. But when you feel good/just about able, go and and damn well do it!

You are an inspiration to so many people.

Anonymous said...

i think i know how you feel. sometimes i have to face up to the fact that life is unfair, highly ironic and a bit of a shit really. but other times i love being me becuase there are so many great people around me to inspire me and so many things left to do. i don't really know where this message is going... you're never alone... keep your chin up, though i'm sure you don't need me to tell you that.

i was going to end this message with a profound quote... but then remembered this one and hought it suited you much more:
"Pink, everything I think it must be pink!
Pink kitchen, pink walls, pink waterfalls!
Orange and blue simply will not do."

Keep smiling

Tinx said...

Just to say my thoughts are with you at this hard time.

Anonymous said...

Oh hun. I am sorry for everything you're going through. I have been pushing the site on everyone for organ donation awareness.. I run around in my shirt. I want you to get lungs. And I will continue to fight in anyway I can too.
I am not on the list yet, with 19% lung function.. I won't be on until august most likely... Just take everything one day at a time. I know you will get those lungs you need. You'll be blessed. *hugs tight*