Friday, May 22, 2009

I know I know....

Completely lax blogging-ness yet again. Sorry. Life just never seems to stop at the moment. Well actually, I've paused today - first day off in weeks - and it's rather nice not to be traveling anywhere this weekend!

Last weekend I was up in Manchester to do some filming with Oli. We filmed the lovely Holly Shaw and also attended Team Ethan's fundraiser. It was a wonderful event; there was so much laughter and friendliness and warmth, but everything was tinged with sadness. The Collins family are just incredible; I don't really know how to sum up how much admiration I have for their strength and spirit. It was quite clear to see where Ethan got his ability to smile through everything came from. Oli has put together an awesome video of Team Ethan's weekend, which you can view here.

Whilst there, Oli and I had to stand up and speak. It was one of the hardest speeches I've ever done, as usually we go for the good old "look at this, this is what transplant can do, it's amazing" but of course that was not a possibility given the circumstances.

Jumping a bit (but it's related, honest)...there's some strange creature who calls herself "Kate" who has been raining down criticism on Holly, both about her Battlefront campaign and about her as a person (charming). "Kate" claims her biggest problem is that the whole story isn't being told, that transplants are not the miracle they are made out to be.

Firstly, whoever said they were a miracle? If transplantation was a perfect solution then anyone born with something like CF would be listed at birth. It's not perfect, it has risks, it has complications. But what aggrivates me about "Kate" and her opinions is that she is missing the whole damn point. Transplants are not offered to people who have other options; they are a last-ditch attempt at saving ones life. Not only that but my god is my quality of life 20 billion times better now than it was before. I didn't even realise how my illness affected everything I did until I was able to experience life this side of the looking glass.

For me though, transplantation holds as high a significance psychologically as it does physically. When I was waiting for transplant, I was able to keep going and to aim for things and to try and continue living my life (even by making tiny steps forwards). This was because I had hope. I had hope that this call would come, I had hope that I'd get a second chance at life, I had hope that someone out there would sign the organ donor register and in doing so save my life.

Hope is a huge thing and cannot be underestimated. Without that knowledge that I was aiming for something, I can guarantee I would not have lasted those 22 months. I was fighting for that chance, that hope and that's why (and how) I held on.

How anyone can suggest that because your hair can get thinner and you might get acne that having a transplant isn't worth it is completely beyond me. It just shows a complete lack of comprehension of the whole picture. Ethan's family are so movingly grateful to have been called, despite their sad ending, and their amazing graciousness makes me even more angry at people who make sweeping generalisations about how transplants aren't worth it.

A transplant offers hope. It offers the chance (sadly not the guarantee...not yet) of a new, better quality of life. It can save lives when nothing else can. And it is the most beautiful most precious gift anyone can give.


Me said...

this Kate sounds like an idiot, I assume she is in perfect health and has no idea what its like to know you are dying? Some people ey...?!

Jen said...

hi Emily,

great blog that puts into words the frustration i feel at Kates comments, namely the biggest thing she is missing about transplants is that it offers hope.

Like you, having a transplant isnt just medical, it is psychological... that I can look forward to the future. When I was first diagnosed with kidney failure I could literally envision my future crumbling before my eyes... the hope of a transplant kept me going all those years of being on the machine, the hope that one day I might be off it.

I know this tx will end eventually, that once it does I might be stuck on dialysis, but who cares, because as you might say- this is my life and I am loving it!

Unknown said...

Some people just like to talk to hear themselves speak!!


Holly said...

Great blog love and well said! Your speech was pitched perfectly (even if you did forget to say what transplant you had, had!)

A transplant truly is the most wonderful gift to receive, a second chance and a future to look forward to!

Much love x

Jac said...

well said Em!

lulu said...

OMG! This "Kate" obviously has issues and has no idea how precious having the gift of life is. She should really do her homework before making silly comments. I am beginning to reap the benefits of having a transplant and enjoying the extended life I have been given! :-)

Aunty P said...

well said Em.xx

suzie said...

Very well put across Em, there are risks with any major surgery but the benefits from receiving a transplant can be huge. Even if that time is short it's far better than the only other option most people face at that stage.

Much love. x x x

Anonymous said...

Unfortunately for 'Kate' any valid opinions are somewhat discredited with her nasty personal insults to a lovely girl who simply doesn't deserve it.

Audrey xx