Wednesday night, I was sitting on the sofa, in my usual pretence of resting whilst actually working on campaign stuff and generally mucking around on the net. Suddenly a message appeared on one of the forums I use saying it had just been announced that Gordon Brown’s son has been diagnosed with CF. Bemused I turned on the TV and watched the news item which was by now on most channels. Then when I saw Nick Robinson’s report which mentioned my speech at Downing Street two years ago I realised things may get a bit busy, which turned out to be a rather accurate prediction.
The phone rang as I was still watching the news that evening and marked the start of what was to be a rather hectic 24 hours. On Thursday the phone first went at 8.30am and then rang pretty much continuously throughout the day. Thank god for A’s mum and my mums friend who both made the mistake of popping round to see me and found themselves fielding phone calls, taking messages, welcoming camera crews, and their most formidible task; forcing me to shut up and lie down for five minutes to rest, as well as eat and drink in between talking.
I am a CF Trust ambassador (along with my partner in crime Oli who was equally rushed off his feet yesterday) so I expected and welcomed the job of explaining CF to various people in the media (plus of course I featured yesterday as “the girl with CF who did that speech”). I spoke to a couple of newspapers (two of the articles viewable here and here), did a radio interview, and quite a few TV interviews, with the last camera crew packing up and leaving around 6pm. Consequently I am being meticulously behaved today (relatively speaking) and am staying in bed with my high-flow mask on, which tiny lungs are very much appreciating.
As you may have gathered from this blog, I enjoy telling people about CF and my life with it; I find it cathartic and that it alleviates some of the feeling of helplessness which accompanies my present situation. Doing ambassadorial work has presented me with opportunities, and more importantly has allowed meet a variety of different people, and continues to facilitate what for me is this vital link to normality – I don’t think people realise just how much social interaction is created on a day to day basis through simple things like at the station, at work, and at the supermarket and other seemingly mundane activities - even now I am quite restricted due to oxygen and general refusal of compliance from my lungs.
As for the overall trigger to this mass media interest in Cystic Fibrosis, my thoughts are well and truly with the Browns, as it would be with any parents learning of a new child's illness. I do not know what it is like to be a parent who is told that their new baby has a life-threatening condition, but I have talked to my parents about their experience and spoken to various families and parents about their experiences. When I was born, my parents had the choice and freedom to tell who they wanted how much they wanted, and to come to terms with CF in their own time. As I understand it a newspaper broke the story on Wednesday night, so consequently this is a freedom they do not have, and regardless of who they are they will like any parents be trying to adapt to life with CF as a family.
Cystic Fibrosis is not a trivial matter, and it can be a terrible illness. There is absolutely no point me saying otherwise as my present circumstances would completely belie any such statement. But what I tried to make clear in any media I appeared in is that Cystic Fibrosis is a part of your life, it does not dictate who you are or the life you lead. As I said in a previous post, when I discussed how we use the label of an illness, the mere diagnosis of having Cystic Fibrosis does not instantaneously qualify for or except you from anything. The fact that you have CF will not change regardless of how you decide to view it and so the statements released on behalf of the Browns which say that they are staying positive and optimistic and focusing on their healthy fit and thriving baby boy reveal a fantastic attitude and one I agree with.
When the CF Trust was formed in 1964, cystic fibrosis was a childhood illness, with an average life expectancy of just 5 years. By the time I was born, this had risen with predictions that I may well reach my 20s, and for children born today with CF, the outlook is even more hopeful again, with a current life expectancy of 31 and rising with funding and research allowing for constant improvements in care. For me CF has wreaked havoc and indeed wrecked my lungs, but not my life. I am determined to try and keep a positive attitude; I don’t see what harm staying optimistic will do and it may even help.
Anyway I still have a whole lot of living to do.
2 weeks ago