Use your blog to connect. Use it as you. Don't 'network' or 'promote.' Just talk. - Neil Gaiman
Today I was given a strange thing to consider. Well, not really to consider, as much as to get my head round. What if you know that in a number of years you aren't going to be able to see anymore? How do you deal with that?
Firstly: I'd like to make a change to the law which means that all audio tapes are, in future, recorded by Alan Rickman. I think that's a given, really, and an entirely reasonable response. I shall be writing to David Cameron about it first thing in the morning. I fully expect him to make it his top priority.
Secondly: well. Blimey. I'm not sure there is a secondly that isn't extremely rude. In fact, I think it's 0:52 of this video here.
So yeah. Those who have been following this blog for a while might have read my post about 'Why I Write.' I have a genetic condition called EEC Syndrome, a syndrome caused by a defect in gene p63, a gene in charge of cell reproduction. It causes clefting [more or less of certain things], which means I have missing fingers, toes, teeth, a cleft kidney, and cleft tear ducts. I was born with syndactyly, ectrodactyly, and I've had dozens of operations [the most recent just three months ago].
Today I went to see my geneticist to discuss new research which has proved that people with EEC who have eye problems sometimes lose their sight. The p63 gene programs the cornea, which reproduces itself all the time. Eventually it mutates, reproducing differently, until it doesn't reproduce properly at all. Cornea transplants don't work because those with EEC are programmed to destroy the new transplant with damaged cells.
I've been referred to Moorfields [where I had eye operations as a baby], and a specialist eye geneticist in Northern Ireland. I'm on the waiting list should there be problems and any trials come up. I'm putting my faith in stem cell research. And if it doesn't happen to me, it's still happening to people like me.
And I'm sitting there, and in my head I'm laughing - because it all sounds so ridiculous, doesn't it? I mean, you piece the science together and it makes sense, but, really - what?
I'm in a very surreal place right now.
I guess I wanted to say: this is what's happening with me right now. There aren't any 'weird things' or googles or poetry or whatever in this post. This is just what I did today. I've been told things before: I've been told 'you can't' and 'you won't'. I've heard the word 'disability'. And, fuck it, quite frankly. People get knocked down, and, after a think and a hug, they stand up, and they bloody well keep walking.
Even if I do end up walking into the nearest wall because I can't see it.
Shit happens, doesn't it?
Lots of love to you all x
ETA: 19th October: I am now doing a fundraising event to raise money for the research centres who are looking for a cure for this degenerative eye condition. You can find out more information about that over here.