I think most of you have heard the heartbreaking news about Jess, but this blog isn't about that, as I can't write that blog just now. In fact I'm struggling to write anything coherently at the moment; my words seem to have escaped me, all words, my ability to type and to write. It'll come back, I'm sure it will.
This blog has been triggered by a girl called Tori who is waiting for a double lung transplant. Her post that got me thinking is here. She actually keeps two blogs, the other one can be found here.
Reading her post about sharing her story publically got me thinking. Particularly this bit:
When I talk about my CF I try to emphasize all the positives, tell people what I'm still able to do and how although I might feel crappy now I'll be better in a few days. I decided to submit myself to Live Life to Give Life as a face for their media campaign and am now having to forget all the positives and focus on the hard stuff, otherwise am I a good person to motivate people to sign up to the organ donation register?
I started reading back through my blog to see how I spoke about the struggle to keep going whilst waiting. I think this month gives a fairly good mix. I think (and hope) I spoke honestly, with a mixture of good and bad, because I truly believe that you can give a balanced picture. The illest of ill people laugh and smile and have good times. And maybe by sharing your personality it makes the story even stronger?
Life isn't black and white, therefore adding colour and texture to the picture you are trying to paint makes it more realistic...doesn't it? Then again, in order to highlight the urgency, it is important to focus on the severity. I know all too well that mask of "I'm fine" that people waiting for transplant painstakingly paint on. You have to, because if you start thinking about how hard life is all the time, it makes daily life pretty hard to face. But if you don't speak the truth about how hard life can get, can people really understand?
Yes that's me in 2006 in a nightclub. With my oxygen on. Looking a tiny bit blue.
I'm not attempting to answer questions here, I'm just very interested and grateful to Tori who gave me something else to think and blog about.
Apologies for the scatty and poor writing; any ideas or opinions on this would be great. And do stop by and say hi to Tori on her blog as she continues to write about her life, her wait and her hope for transplant.
My next blog will be about Jess. I just have to find the words.
Update to say there is no update!
1 week ago