Friday, December 01, 2006

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.


Anonymous said...

I think you've got this right Emily. CF is part of us and the gradual deterioration we inevitably go through is so slow that we learn to adapt so that we can pursue as 'normal' a life as possible. However, the reality remains that we have to adapt because of CF, but that also doesn't mean we aren't living our lives.

Perhaps if we woke up one day at the later stages of CF, after having years of good health, life would be more difficult.

I also think that knowing and understanding from a young age what potential obstacles that CF may hold, helps one prepare and deal with CF.

Just my thoughts ;)

p.s. Good going with all your media work.

Anonymous said...

Hi Emily,
Thanks for your hard work over the past day or two. love to you


BreathinSteven said...

Hey Emily...

You keep living your life as best as you can -- and keep wearing that pink! (it truly IS such a cool color...)

I've just learned of you and read a little about you -- I'm proud of what you're doing getting the word out and spreading awareness... When you touch another person's heart you may be saving other's lives... Or at least extending them...

My name is Steve -- I'm 46 1/2 and I too have cystic fibrosis... 6 1/2 years ago I got what you're waiting for -- I received two beautiful lungs... I found out a few years later that they were from a beautiful 17-year-old girl named Kari...

My princess helped me build a little website with some information about me and my tribute to Kari -- my way of keeping her smile alive:

I understand what you've been struggling through for the past 22 years -- I struggled through it for almost 40... It's funny, but it doesn't always seem like "struggling" while you're living it, does it? I hope you get your beautiful lungs and you recover like I did... Because, Emily, breathing with "real" lungs is going to blow your freaking mind. I've had them for over six years and it blows my freaking mind every day...

I'll keep you in my thoughts and prayers... You take care...



Anonymous said...

well done for your hard work Emily must admit did wonder if teh publicity from the Browns may well highlight the work that you all do & emphasise to the public the need for oragn donation etc.

Good luck, take care and hugz Elaine & Rach :D xx

Anonymous said...

Jake's very happy to have a famous new friend!

Well done on dealing with all the recent publicity with such good grace. x

Sandylizz said...

Emily well done and thanks for all your hard work for us over the last couple of days!
Your avery strong person and your right it may affect the way we live but certainly doesnt stop us living, infact I think we appriciate things alot more than most!
I hope you gave your lungs lots of rest today but also enjoyed your day

xx Sandy xx

Anonymous said...

I've found myself posting links to CF Trust and the Emmie slideshow on You Tube alot on forums I frequent these past few days!
It is devastating to parents to hear your new born has a life threatening condition and I truly feel for the Browns.
I have to admit when I was watching the TV same time as yourself and seeing the report regarding a young lady's impact at Gordon Brown's house a couple of years previous...I wondered if that person might have been you...then Aaron ran up the road from his Papa's to tell me "the lady I knew to do with organ donation had been on the telly"...keep up the wonderful work you do,just don't do too much....take care of yourself
Cat x

Anonymous said...

Still being an inspiration then. See what happends when you have a bad day !

Anonymous said...

To Emily, I have been reading your blog of an on for a while now. You have only given me inspiration in life even though I do not know you. You seem to have such strength and determination even though you will dismiss that comment.
I myself have had a heart transplant. I try to draw as much inspiraiton from you to try to achieve everything in my life which I can. This is because I know I am one of the lucky ones.
I wish you luck in everything

Anonymous said...

Hi Emily,

You're a star. Thanks for your relentless efforts getting such a positive message out to the media this week. It's inspiring.


Anonymous said...

Dear Emily, so sorry - off work for a week with a bit of a bug so out of touch (but never out of mind). You have been busy recently; good for you. Just don't let all this media stuff wear you out. As always, I am in admiration of your fantastic courage and you have a wonderful insight into your own mental processes. Don't let go of your goal - they say it's the way to success, focusing on the final goal rather than on the steps along the way. Just make sure your goal is perfect health, not necessarily a transplant; you don't need to decide on how you achieve your perfect health. Keep on repeating "I am so grateful for my perfect health" day and night; believe me, this is much less exhausting than trying to focus on the means to achieving good health. You'll get there; I can imagine you have really low moments; your suffering is ongoing and I am in awe of your amazing positive attitude. It will pay dividends, trust me!!

As always, thoughts are with you at all times. Take care. Janet

Anonymous said...

Emily sending positive vibes to you and hope your stay in hospital won't be 2 long! At least if they can make your more comfortable & MOT in time for xmas!

(((hugz))) Elaine & Rach xx
ps will keep an eye out for your updates............