I've been thinking about a lotta things lately - YES PEEPS - I DO THINK SOMETIMES! And I originally started this blog to help me understand what was happening to me because of what 'Bill' the brain tumour had done, and was doing to me.
I have recently had a lot of questions about 'Bill' and I realised that although I have written (sometimes quite technically) about 'Bill' - I have never really written about how we discovered 'Bill'. Well that was a very LONG and very painful journey, that I don't really want to go into GREAT detail right now. So let's just say for the sake of brevity, that it was quite by accident - after an artery burst, while I was in hospital in October 2008, and the doctors called for MRI and CAT scans.
A friend of mine asked me the other day, about 'Bill' and the symptoms that I experienced, that led to the discovery of said wee beastie... My mom first recalled me having 'episodes' where I would become 'blank' and 'stare-y' at around the age of 3. Quite a few of the 'experts' have questioned this; but I trust my mum and I think a mother does know best, what is happening to her child!
I still do have those episodes, where I go 'blank and stare-y'. This is immediately followed by what is known as 'a global amnesia episode'. I do not lose consciousness AT ALL i.e. I DON'T blackout - but I do not know who I am; where I am; or who anybody is; for anywhere from three quarters of an hour to an hour long.
People ask what this is like... It is FECKING FRIGHTENING to say the least. I don't forget how to 'do things'; like drive a car for example - but for that hour or so; I cannot recognise people or places and have to be 'talked down' from a massive panic attack.
There have been times where I have been on my own; and I have just stopped what I was doing; like delivering mail (when I worked as a postman); and sat down; (cried a little - okay, cried a lot!) and waited until I started to remember something. When the memories come back - they come back in short bursts; and that can be equally frustrating, as you are given random parts of your life back; some that don't even relate to the situation you are in!
My symptoms have been quite extreme, to say the least, with extremely long episodes of headache/migraine/pain before the blackout; followed by a STONKER of a migraine immediately after; where I basically collapse on the bed and sleep for the better part of the day. The weird thing is, for that brief hour where I am experiencing the blackout; I am COMPLETELY pain free! As the memories come back, so does the pain.
I was also asked if my school work was ever affected and I definitely maintain that it did affect my school work. I seem to recall a few episodes where I went blank and stare-y in class - but in those days the teachers just used to put that down to Ryan 'zoning out' and 'being away with the fairies'. When it came to exams and exam time; I found that I had to work my ass off, to try and catch up on things that I didn't ever remember learning in class - and I had to effectively 're-teach' myself! (Quite scary!) And there were times that the old excuse 'I forgot to do my homework' was a GENUINE reason! LoL!
For me, it was something that I had kind of HAD to get used to from a very young age. But I think I only realised just how serious the episodes were, after we had Shaughan. There were times where I had 'a blackout', but I was FORTUNATELY with Robs; so it was alright. One incident I can remember vividly though, I was on my own with Shaugs.
I was busy driving him to nursery one morning and just looked up into the rear view mirror, to discover a toddler; in a kiddies seat; in the back of the car! I just about had a heart attack on the spot! I thought I had stolen someones car with their child in the back - after all; that was the only 'logical' explanation!
Fortunately we were on a quiet country road; and I had the presence of mind to pull over somewhere quiet; check the wallet and mobile phone I found in the consol; look up the most dialled number on the phone (which happened to be 'Beany Poo') took a flying risk and called the number! When Robs answered the phone, she realised what was happening through the tone in my voice and she talked me down; got me to take out the Sat Nav; and basically talked me back in!
Shaughan was aware of what was happening but he was quite relaxed. At one point, he broke my heart into sixty million pieces, when he said: 'Don't worry daddy - I know you can't remember; but I'll remember things for you. Your name is Ryan'. We have never hidden what is happening with me, from him - but we do guard WHAT we tell him. He is after all a child, and I want him to have as 'normal' an upbringing as possible.
Robs has dealt with it all in her own way. She has been an absolute TOWER of strength, never wavering, and ALWAYS there for me and for Shaugs. I sometimes feel incredibly guilty that she has to deal with all of this, while trying to raise a family - but she is a real trooper and has never complained.
It was after that particular episode with Shaugs, that we started seriously pushing my old neurologist to come up with answers. He was extremely dismissive at first and wouldn't even entertain us (One time he refused to even attend our scheduled appointment!) It was after that, that we DEMANDED a new neurologist, and about the same time, that the artery burst, while I was in hospital. I think the doctors realised that they were possibly dealing with something quite serious and so we were referred to my current Neurosurgeon.
So that people is the 'brief' story of 'Bill' so far. I am always open to more questions - so don't be shy to ask - I will always answer you with pleasure. For now - I gotta go have a small sleep - as I am quite knackered after blogging. I never realised just how much, emotionally, it would take out of me to write about 'Bill'. But I'm glad that I did!
Ciao
-x-
