Munchausen by Internet

It is a sad day today in the American CF community, and the CF community as a whole. There has been a blog running about a girl called Pepe who supposedly had CF and went through a transplant, the person has been exposed as a fake, or probably more acurately someone suffering from Munchausen by Internet.

I was not an avid reader of the blog, I don't know why but I just never got around to checking it regularly, however it did have quite an audience of people who were hoping and praying for Pepe and who were utterly emotionally, and in some cases financially, involved in the story.

It has annoyed and upset me, despite my lack of personal involvement, on principle. Although I wasn't involved in her story there have been others who's story I have become involved with such as Emily's and Oli's, I can't imagine how utterly betrayed I would have felt had either of their blogs turned out to be hoaxes. There have been some very low points in the last few years where literally the only thing that has got me through to the end of the day has been a little voice in my head saying 'If Emily and Oli could do this, worse than this, then you can too!'.

It is a disgusting manipulation of the emotions and trust of the CF and transplant community, a community that is made of vulnerable people.

Almost more scary however has been the way sections of the community has reacted, someone has set up a blog literally, and very successfully, stalking this person and every website they have ever contributed to, many have made violent threats. I understand the anger, but at the same time it is just the internet, you can just never truly know unless you KNOW that person in real life, it never ceases to amaze me how het up people can get over someone they don't know!

It has served as a reminder to me just exactly what the internet is made up of. I am always telling friends off for posting details that link them to a specific place or taking part in those stupid 'what's your porn name' things that are just designed to get personal information out of you. Even today I have been sat here thinking back over all my posts and trying to work out if at any point I've given too much information away about where we live and what are lives are like.

I guess that is the problem with a blog, you want people to see it and read about you, but at the same time you don't really want people to know anything too personal. My friend Adam and I actually discussed my blog and he commented on how different it is in style to my old one which was much more emotional and detailed. I admit that even I at times look at this blog with a certain level of dislike, it's a very 'happy clappy this is what I did today' kind of affair, there is very little in depth analysis of how I actually feel and what I think about things, but then I think I have become more aware of my potential audience

This a totally public forum after all, any future employer or client of mine could read it and I'm not sure I really want them to know all the dark emotional wrangling that goes on in my little mind, nor do people I know read this really want to know the gory details of what Luke and I do with chocolate buttons of a nighttime ;o)

I don't want to be at risk, I don't want my family to be at risk, yet at the same time I like having a blog, I even stated it as one of my hobbys on my birthclub, and heaven knows I have few hobbys as they are hard things to maintain when you are unwell and have no energy all the time. I guess you just have to be careful.

I find it amazing how involved strangers do become (and I write this like I'm not one of them haha!) but when you read these blogs you really do begin to feel like you KNOW the people involved and begin to share their hopes and ambitions with them, and cry and worry at their troubles. On some levels it scares me, and on other levels I think it is actually the true power of blogging, the way it gives people a platform to speak and an audience to listen, an audience to care, I think it brings out the best of the human spirit, and demonstrates far better than any myspacefacebook can what true social networking is about, it's not some empty list of 'friends' it is about connecting, and about caring, you give up something of yourself and in return you get something back.


So back to normal happy clappy scheduling we go...

Thursday - was a day of rest, I laid about the house and did nothing but snuggle with my boys adn watch DVD's in order to recover from the excitement caused by the mices and ballerinas.

I watched 'The Last King of Scotland' it is VERY good, though very sad as basically it's happening all over again as we speak in Zimbabwae and yet again to my shame it is us English who had a major hand in putting a madman in charge.

However I am also angry with the people of Africa as I whole, why don't they get their shit together and sort themselves out?? They could be a rich nation they have lots of valuable natural resources and a lot of manpower, if they just stopped bickering and squandering it all on corruption and guns and stopped shilly-shallying about waiting for someone else to sort it out they would all be a lot better off!! That said if I had a bunch of guys in a jeep with massive guns riding through my village shooting and raping everything in site I don't suppose I would be that keen to make a stand and make a change either. Sad world.

I thought the most clever thing about the whole film however was how little it showed of the ongoing genocide, despite the fact the characters were right at the centre of it. It demonstrated exactly how these atrocities happen and continue to happen, because those who could do something choose to bury their heads in the sand because they personally have something to gain from doing so.

And if all that heavy political stuff doesn't do it for you it also has lots of shots of James MacAvoy's bottom in it :o)

Friday - I meant to take Edward swimming but his skin was so bad I thought it unwise as I didn't want to aggravate it. So I spent the morning supervising Edward's nappy-free time whilst watching 'No Country For Old Men'. It was a good film, though I think it thought it was more intelligent than it actually was, I felt the serial killer was a silly character who spoilt the film and they just used him as a device to say certain things, but as he was so melodramatic and cliché they'd have been better off leaving him out, Tommy Lee Jones however was utterly fantastic.

I then took that and the other DVD as well as some books back to the library as they were only on short loan. I left Edward in his daddy's capable hands as I couldn't be bothered with heaving him on and off the bus!

I wandered back slowly via some shops where I got some nice candle/sauce dishes and then the pharmacy. Luke cooked us dinner we had tasty chicken kari...he's branching out :o)

Saturday - I had a lovely long sleep from 11pm last night till 8.30 this morning!! It was truly blissful :o) I think the sleepies must have stayed with me as I really haven't done much all day expect faff about on-line. I planned to go and get maple syrup so I could do American pancakes which I have been craving lately but in the end lazed out and just made Luke a plain bacon sandwich.

In the afternoon/evening I made roast beef, Edward particularly liked the Yorkshire puddings :o)

After Luke finishes raiding with his WHOLE guild (very exciting stuff I can tell you!) we are going to watch some more Trigun which is turning out to be rather good, it really makes me want to roleplay though as the structure of the episodes feels so much like an RPG plot, it really makes me laugh as alot of the time the animation of the lead character is naff......but whenever he is saying something profound or trying to chat up a girl they sex him up manga styleeee!!