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I'm going to use this page to rant on about whatever the hell pops into my mind, shakes it up, confuses it, or enlightens it on any given day. Its going to be random and hopefully thought provoking. I haven't got the discipline to keep a journal, but just don't want to keep adding on bits and pieces to the other main topics!, This pags is certainly becoming more autobiographical. Where once I was afraid of offending or embarrassing others, now I really don't give a monkey's, and realise that you can't keep everyone happy all of the time!

Sunday 21/2/10: Am never going to complain about the cold again. Am looking out this am at another winter wonderland scene, that I'd far prefer were confined to a book. Have alredy endured one week, of being snowbound. And to think some people still dismiss global warming?

Went to see "The Lovely Bones" yesterday. Luckily I had listened to the audio bood and knew the story. Audio book' are great. Its a very hard film to translate to the big screen, but seoirse rowan is great. Then it was on to the Titanic exhibition out in citywest, which was fascinating. I got a great doctored picture at the ship's grand staircase that I will put up soon.

Went to see invictus on Saturday in liffey valley. The wheelchair spaces are up at the front, but there is sufficient space between the front and the screen that you aren’t straining your neck out of its sockets.

The film, or at least the bits that I could see and hear, was ok. A little bit hollywoody. I really don’t think the problems of south Africa, were at all suspended or eased by the winning of a rugby match. I know that’s simplistic, but was the racial divide that alleviated as a result? Anyway I digress.

My main issue was when a guy ( I presume he was an assistant) came in with two guys, one who was quiet, but the other groaned and growled loudly through the film, eventually being brought out towards the end of the film. I thought it was very unfair, and my anger would be directed at the assistant, who obviously just wanted to punch in time, and get to see a movie for free.

I presume it wasn’t for the intellectually disabled guys benefit, as he spent his time on the sound effects, slurping on his drink and depositing popcorn on the floor. My rights to see a film, do not supercede everyelse’s who have paid good money to see the film in peace. If they had been, a noisy young pack, the ushers would have been obliged to throw them out, or if he had tourette’.

Unfortunately, we all come under this huge umbrella of disability. I no longer bring in popcorn or a drink to the cinema, as I eat too noisily and have a spasmic reaction to sudden noises(as one guy in tallaght found out to his cost years ago).If there comes a time where I can’t eat or swallow, then I won’t go to a restaurant, and subject the other patron’s to that unappetizing sight.

Getting a new mattress and have a visit from a physiotherapust tomorrow. How exciting!

Wednsday 3/2/10 Normality: Friend or foe

Caught a glimpse of you briefly,

Miss you now you’re gone,

Hope I will catch you agaBefore I’m done.

Its a gaping character defect, which I cannot attribute solely to fa, but I have an intense jealousy of other people’s accomplishments be they big or small. Their travels, social lives, jobs : their normalities! It seems to me at times, that even if you have made a lifetime of wrong decisions, with bad choices around partners, drugs, kids etc, that’s all part of living, and it sure beats being bed bound watching life monotonously tick past.

The crazy thing about fa is because it is relatively gradual, you fight with all your might not to fall under the vast all encompassing term of physical disability (probably because once you get to that stage you are stuck there). I look back now, and it is sadly ludicrous that I considered myself normal, even when I was staggering under passing lorries, uttering things that even I couldn’t understand, or struggling with personal care issues.

Badly need to broaden my social repertoire, and try different things. Need to break out of my self constructed rut. To that end, I will be making some dates with the riverbank theatre in new bridge. Bought tickets to see the Shen Yun Performing Arts troupe, when they come to the new grand canal theatre in Dublin. There seems to be a new trend of not comping a disabled person’s assistant. Thankfully I don’t have to buy two tickets at the uci cinema, as this would make the cost prohibitive. I am not using a seat, but am paying for the assistants, whether they can understand, or even abide by the film. Maybe its just the inevitable, profit maximising reality of the times we live in, but an analogy would be charging a blind person’s guide dog too.

Tuesday 26/01/10: Want to clarify the overall tone of my website. I don't want my website to be seen as negativte. The overriding aim of this website, is to provide me with a forum for self expression, so that I can be in the middle of the countryside with a dilapidated body, and still feel connected with the outside world, and that someone somewhere is listening. I got a email last night from someone in Wales, that has a brother with fa. I hate to think that I am adding to any sense of hopelessness or pessimissm that someone may have, but for me this website is a form of therapy, and I am not going to sugar coat it for anyone or anything. Life is precious, people are amazing with what they endure, and I can say this until I am blue in the face. But people, especially those who believe in talking snakes and virgin births, look at it in a very narrow form, and extract from it only that which goes along with there beliefs; ie that I am a godless, bitter and twisted individual.

I suppose I have been fortunate, that I have never contracted a virus on my pc before. It was only out of sheer meaness that I looked up youtube, and found a site which promised to be able to download free movies. The site called graboid.com infected my laptop with some trojan virus. So from Saturday on my laptop kept crashing but it has been a nightmare, and it just goes to show that you always need to back up all your files. To my credit, the laptop is a lot better now, but only because I've been manually going into the registry, and deleting suspect programs. This is very time consuming, and the tech support people in England quickly lose patience with me, as they can't really understand me, and wonder why it takes me so long to execute all ther instructions.

I had a visit yesterday from a occuptional therapist which was the first time in around eighteen months. She only needed to take one look at me, to be aware of how bad my posture is. Given the budget constraints of the health board at the moment, I don"t think I am going to see anything materialise at the moment. She mentioned a "tilt in space wheelchair" which I had to look up on the internet, but which I must admit does look very promising. Its only really when I catch a glimpse of my reflection, that I can totally apprecieans ate how appalling my posture really is. I am now totally sloped over to the left hand side, and question now all the time I spent on youtube looking up yoga poses and other exercises that I can do. It all seems largely to have been in vain, but I suppose so much of what goes with fa means that you are taking one step forward and two steps back.

Wednsday 20/1/10 I am so annoyed. Sky news are saying that a mother has been sentenced to 9 years for ending the life of her brain dead son. What a despicable ruling. I get the foul stench of religion. Would the judge and members of the jury volunteer to change, feed and comfort him if his mother had died herself? Its very easy to pontificate about abstract issues, when you're not the one dependant on others for everything and stinking of piss! I now view people who follow the teachings of desert itinerants as mentally sick, and its frightening to think they want to shape the laws and dictate how people "live" their lives in 2010.

Love katherine lynch the comedienne, but yesterday' single women wasn't great, and I hope that she is not going to run out of material, and go the same way as catherine tate,. Went to see Avatar again in liffey valley ( it just won't be the same on dvd). Whoever designed the cinema' in uci newbridge, vue liffey valley and storm cinema in naas have a hard neck if they call themselves architects. The wheelchair spaces are up at the very front, and your neck will suffer. You can't beat uci tallaght. Centre back, as it should be.

Saturday 16/1/10:I am never going to complain about the freezing cold or rain again. I had two weeks of tortuous immobilization. Where most of the main roads were impassable, even during the worst days. Our narrow country roads were just treacherous. Thankfully we dont have this every year, and to think that some people still doubt the existance of global warming. Well I suppose we better get used to it. I am just back from seeing Avatar for the second time. Its difficult to explain how visually stunning it is, and don't be put off thinking that it may just appeal to children.I am determined to go swimming tomorrow. I've really got to disclipine myself more, and not just fall into a lazy habit of drifting through the day eating.Found a site by athiest ireland about opting out of the catholic church. The recent blasphemy laws here has goaded me into this. To think that a crazy set of conditioning thoughts, shrouded by the untouchable cloak of "religion" should be law in 2010 is just too much to stomach. I don't want to be on their register, and have them factor me in their numbers. Free speech is a basic. Nothing should eever be considered beyond discussion or criticism, and such a law is a major retrograde step. On a lighter note, I bought the hilarious katherine lynch dvd, its a real tonic. Would love a sun holiday at this time of year, but the organizing logistics are proving to be too much of a headache.

Monday 21/12/09 Virgin's can't give birth people!

Imagine a heavily pregnant young woman going into a social welfare office, plopping herself down and beginning to fill out forms for the express reason to get some money to get over this time of the year.Having returned the completed forms, the middle aged obese woman, peers at her over her glasses, and her reddish jowels wobble, as she barks that the father' contact details on the form have'nt been completed.

" the government can't be expected to shoulder all the father of your child's financial responcibility madam, in a tone which pulsates through the room

"Oh, it was an immaculate conception", the young woman breezily responds

That poor woman would be sent to the nearest psychiatric ward so fast!

Sunday 29/11/09 : Joe's second anniversary

Even though the weather today was so appaling we went up to our local church for Joe' anniversary mass. In some ways it feels like a life time ago, but in other ways it only feels like yesterday, as I suppose the film is constantly being replayed. The heating in the church wasn't working, and I was absolutely stiff as a board. Combine this with the fact that the mass itself is completely devoid of meaning for me now, and the end result is that I'm sure I won't be back for another long time. I only went anyway for mothers sake anyway, but I couldn't get home soon enough, and was not tha stupid to venture outside again.

Someone said to me today "you must feel so sad about Joe", probably expecting a gushing responce.. My immediate response was no, they could have kept him alive, but only if they gave him a tracheaotomy, and the thought of him still in his room , without even the ability to verbalise is absolutely appaling and barbaric. Unfortuntately I know there are plenty of cases like that in Ireland today. The first thing I would say to those who proudly proclaim themselves to be "pro-life", is just exactly what kind of life do you believe in? Even though we have his grave very nicely done up at the moment with lots of little statues and flowers, I feel fairly certain that he sure aint there underneath that wet and sodden ground.

Today was more or less the first day that I have stayed indoors. It would have been pointless to go somewhere anway, because a lot of the roads were completely flooded. Thankfully we live on a hill so are relatively unaffected, but I do wonder sometimes how this country does not sink. To think that large parts of the world are crying out for rain and the earth is parched and barren, I wonder does this have to be the way it is or can we not give them even a fraction of our excess, which would no doubt go a long way to solving their problems.

I'm sure I'm one of the last people in the world to avail of it, but I am now enjoying the benefits of Skype. To be able to contact someone anywhere in the world, even if they do not have Skype, is fantastic. It makes the world so small, and it beggars belief how these big communication companies can get away with charging so much. My mother was totally amazed at the technology that allows her to speak to her nephews in California.

02 is continuing to save my life with their reliable broadband service. Thankfully they have now increased their allowance from 10 to 15 GB which is really more than enough. If you are downloading movies or video clips though, they takes up a lot of memory, and it is not worthwhile to go over the designated allowance, as apparently then they charge 5 cent a megabite.