I'm going to dedicate this page to whatever the hell pops into my mind, shakes it up, confuses it, or enlightens it on any given day. It is going to be random and hopefully thought provoking. I haven't got the discipline to keep a journal, but I just dont want to keep adding on bits and pieces, to the other main topics.

Wednsay 14/5/08:i am the most stubborn person imaginable. On occasions it serves me well, and sometimes it backfires horribly. But I'm so glad that this time, it helped me have a great holiday, in a country I had long dismissed as an unobtainable dream. Well, thanks to the net and Vincenzo Pomerico, the dream became reality,and I can now add italy to my small but growing list of tried and tested countries. It does grate on me that a weeks holiday for me costs the equivalent of a family of four for two weeks. But what is the alternative? Stay at home, and watch the world go by? Been there, done that, and am in no great hurry to revisit those days!

Having lived on diet coke for most of last week, for energy reasons, it feels good to be at home, back on my new fave iced tea, and a better nights sleep in my own bed. Its all a happy memory now, but I can now turn my attention to the upcoming celine dion concert in croke park on may 30th (still can't figure out how to sell my two spare tickets to it on ebay!), and my long awaited return visit to my friends in spain, now that their kids are hardier.

There is always some problem, I spent the day in work with a nose like a tap, and barely able to anwer the phone. Is it an allergy, or the beginnings of the flu? Either way, I am taking a genuine sick day tomorrow, as I would be useless to them, and was already beginning to make them splutter At least, I want to try and get down the web report on italy, while all the details are still fresh in my mind.

A girl from limerick contacted me through the site, to ask how she can convince her brother who has FA to start exercising. He seems very like me, not even thinking of years down the line. Believe me, a terrible world openss, hen you are no longer weight bearing. Hello shitty world of hoist and humiliating dependancy!The net is a brilliant tool, and even if its yoga moves, put dependancy off for as long as you can. I never got to see magnificent rome at night, because the bed was ssa lot higher, so I had no choice to be tucked up by 9..And some people are worried about a hell? Give me a fuckin break!

Wednsday 16/4/08: Think I am back online. There WAS a problem with the phone cables, and rather than flogging a dead horse, they have replaced them. Hopefully broadband is one step closer!

Tuesday 15/4/08 Am still without my net, and apparently a rogue electric fence is the culprit. The eircom repair guy phoned me in work, saying that he was phoning from my line, and that the problem must be with my pc cables. I told him that could'nt be the case as my neighbours, on both sides are having the same problems, and luckily for me, halfway through a veiled threat that next time I would be billed for a false call out, the line crackled and went dead! I hope they won't try to pass the buck. At the moment, I am using joe's laptop, with my neighbour carol' vodafone wireless modem. Otherrwise by now, I would be well and truly going up the walls.

I got an email from georgina hambleton, whose book on christy brown I loved. We are now in contact via email, and thankfully she is currently working on a follow up book based on christy' personal letters. The man was a genius, trapped for so long in a beat up physical body, which unfortunately in the ireland of his time, people taught was indicative of what was upstairs. The fact that he typed, painstakingly and with excellent grammar, will give me more motivation, to keep on stabbing at my keyboard, even though I am so slow, and seem to spend most of my time correcting spelling mistakes, and poor grammar, being the grammar snob that I am.

Am delighted to say, that I started back "swimming" on sunday in celbridge. It felt so good to be in the water again, and I could literally hear the wound up tense leg muscles, release some of their tension. Have van, will travel, is my new mantra, and its great to be able to get out and about. Off to italy in three weeks.I found a guy who organizes wheelchair accessible tours. Its a country I've always wanted to see,and for sure I will do a full report on it.

Wednsday 26/3/08: I have had it with eircom! For the last thirteeen days, my net connection has been stumbling, staggering and is now in a deadly silence. To add salt to the wounds, I phoned up the eircom automated responce line, only to be told that the fault has now been rectified. I'll take quite a lot, but don't lie brazenly to my face. As judge judy says "don't piss on my leg, and tell me its raining!". So I've just signed up to perlico's wireless broadband, which apparently uses mobile phone like signals. So if the plug in modem is half as fast as the broadband I'm used to in work, it is fair to say, I shall be telling eircom to go and fuck themselves!

I feel like I've lost a limb, and my daily routine has been shot to shit. I can only respond to emails, plan my holiday, watch my daily dose of you tube, my online banking etc etc only during lunchtime. To "live" this sometimes very pitiful existence, it is great to find comfort in numbers, and to find kindred spirits, where distance is not an issue. I know only too well the horrors which isolation can bring, and believe you me, am in no mad rush to revisit them. At least I got through carrolyn jessop' book "Escape", which is a brilliant read, which constantly makes you want to read just one more page. I no longer feel any need to participate in any celebration of the appauling insignificnce of easter, and for me now it is just another day, made longer and more protracted by the fact that everywhere is closed,and you can do or see not a single thing.

17/3/08: St.Patrick's day

Here doing nothing special, catching up on reading, finally getting around to adding onto this blog, and cursing eircom for keeping me only on shitty dialup, which currently is down due to a faulty line. Will we ever get broadband?? Its actually a beautiful day. Saturday we drove to clare, which I'm sure is beautiful without the ever present torrential rain and heavy, angry and laden skies. We ended up in a pub in a town called mountshannon, where I'd a great sea food meal (the sheer excitement in my life never ends!) beside a great roaring log fire. The owner told us that dolores mcnamara (the BIG lottery millionaire) lives nearby.Yesterday, we went to emo house, which would be perfect to revisit in summer or autumn, when the colours are there. It would be a great place for a picnic, or even to read a book in the vast grounds. Have van, will travel! My brother's bosses wife really saved my marbles this net free weekend, by giving me the manuscript to her autobiography. I loved it. She's a scottish ex nun, who spent nineteen years in various african countries. I thank her for letting me have a front row seat to her life experiences, be they good or bad. Some of the things she witnessed would have sent many a lesser person into a looney bin, or a lifetime on drugs and in therapy, but she seems to be coping fine. She is now happily married, and a reiki practitioner. I must get my act together and avail of reiki. I now consider organized religious material to be mental poison (especially if thats all you read).

Sunday 16/3/09: I am a big believer in the power of a good picture. They are an invaluable freeze frame of life, which can become a seriously precious time capsule, especially in the event of a death. For the last six weeks, I have been involved in a fiasco with a company (not aptly) called cameracare in dublin city centre. The camera which I bought a year and a half ago, was an eight million megapixel lightweight with a great 3" lcd screen. It seems it was slowly breaking over time, the pictures were increasingly grainy,and a definate far cry from the picture perfect clarity which I had come to always expect as standard from my trusty konica minolta. Before my trip to india, I was paranoid bringing it back to the shop I'd bought it from, and they always allayed my fears, by telling me that I simply had the camera on the wrong settings. The pictures from india were ok, but the vibrancy of the colours was not there.

The pictures from new years eve, confirmed to me that there was something was seriously wrong, but it took a visit to a camera shop on george's street, to confirm that something inside the camera had broken, and that the light was not hitting the right spot. That nicon shop owner was excellent, he told me more in five minutes than the other "professionals" had told me in over a year. He was genuinely helpful. Usually, shop assistants are all about the sale and commission, but this guy took time to show me diffferent models and tried to get the best one for me i.e ones with anti shock and touch screen features. Long story short, I decided to get my broken one fixed. I don't really want to buy into this disposal culture, was'nt prepared to downgrade, and could'nt justify spending 300+ on a similar camera, but after waiting a month, paying 161 euro, and taking time off work on a friday to collect it, it was worse than I originally left it in. Nothing worked, and the guy lied to my face by saying it was perfect leaving the shop.

He offers me a full refund, and promises to restore the camera to its original condition, as I have precious vide clips I want to transfer, that other camera's will not recognise the video file format of. When I got it back the second time, the bare minimum had been done (even the shuttter wont close), but he assurd me it will trnsfer video. Now it only turns on if in the docking station. At this stage I am sick of them, have bought a new kodak, do not want to protract things by going back a third time or down the small claims court route. the advice I would give anyone with a digital camera, is not to even think about getting it repaird. Upgrade to a better camera with extended warranty. Believe me, it will save you headache down the road!

Sunday 2/2/08 :I was appauled reading about the supposed catholic visionary Christina Gallagher. Kudos to the Sunday World for exposing her antics. Her delights seemed to be very much rooted in this world, if she has a number of millionaire properties. Her palatial estate in Malahide, is certainly not in keeping with what she preaches. The catholic world seems to be choc full of stigmatists, visionaries, and doomsayers. What I feel terrible about, is that the only people that would have been suckered into giving her money, is the people that can least afford it. You can almost be gauranteed, that sshe was not receiving money from wealthy people (they would not be wealthy for too long if they were suckered into every scam going). It is the exploitation of the poor morons on social welfare, or the people that have saved money all their lives, and think that they are reserving their places in some supposed afterlife, that really annoys me. If I had the courage, I would love to conduct an experiment on Grafton Street. Given the fact that I must look so pathetic most times, I would be very interested to see how much money I would make if I had the nerve to just sit in the corner with a begging bowl,and my right leg splayed out. It seems that she has gotten away with her charade for many years, but it is all now catching up to her.

I have been in contact via e-mail with an ex mormon, and I now know that catholics are not the only crazies. As she said to me, the mormons are a lot of crazy fuckers, and she is glad that she has now removed herself from them. Joseph Smith was indeed a crackpot! I personally think it is a very good sign, that the churches are emptying all over the world, but my only reservation is that I hope people do not cling to the more radical cults in search of meaning. I heard on the radio last week there was a case in Wexford, where an Irish family who had converted to islam, had protested that their daughter should be allowed to wear a full tracksuit bottom instead of shorts when playing camogie. I would take issue with this. She is playing a sport, not advertising a religious preference. I would have the same objection if the girl insisted on wearing a crucifix and rosary beads around her neck. Does'nt seem fair that the girl has to run around in a sweat in tracksuit bottoms, in order to uphold her families cult beliefs. Why do people seem to be so ready to get on their knees?. Are'nt we as humans the real ones that should be worshipped. Anything to me, that puts humans on their knees, or in some deferential posture, has to be considered suspect.

I have just finished a book called "Many Lives, Many Masters", written by an eminent psychiatrist, who's belief systems were shaken up when he encountered a woman patient, who appeared to have lived many lives before, under hypnotic regression. It seemed very plausable and accurate, and it seemed to give him great relief and satisfaction to know that there is no such thing as death, and that we merely pass onto another plain of existence. To be honest though, this does sound just a little bit too condescending for my liking. What lessons are the people that are born into abject poverty and hunger learning, or being born into a terribly dysfunctional family, where they are abused day in day out?. It seems to me that these books are a good read, for people who have the luxury of being able to sit around and intellualize all day.

Yesterday I was meant to go to Midlands Bodybuilders in Longford, to correct the ramp at the back of the van which is leaking oil. I want to take premptive action, before the day comes when we are stuck in Dublin, exhausted after a days shopping, and we find that the lift wont come down. As it happened, the roads were too icy on Saturday to allow us to go. We would have had to set off by eight, as they told me that the job would take 2 hours and they finish strictly at 1. So instead we went to Dublin, where there was the usual good Grafton Street atmosphere, led by a street entertainer called Basketball Jones.

Sunday 6/1/08: As I mentioned before, I am a seasoned watcher of EWTN, the catholic religious channel. But I find myself constantly being amazed, at the thoughts and ideas, constantly being spouted with great conviction, even in this apparently enlightened age. The real scarey thing for me, is that these people want to impose their belief systems on everyone else. They have gotton away with it for too long, many countries legal, health, education systems, etc have been shaped and moulded, by what I heard described on You Tube by a British commentator as the "delusional ramblings of desert nomads".

Now that Ireland is slowly disentangling itself, from the once suffocating grip of dogmatic catholicism, we should never become complacent, and ignore the very real threat of people losing the ability to live their own lives, the way they see fit. Censorship in ANY form, is repugnant, and should be fought actively against. They were saying on EWTN last night that "our lives do not belong to us", that its really all about God, and, our lifes purpose is really to discern God's mission for us. I have a major bone to pick with this, or indeed any ideology that puts people on their knees, or in any subservient position.

Any belief system or ideology, which attempts to curb peoples minds, by restricting what they can see, do, or read is bad! Apparently the Islamic religion, is on a major membership explosion. How anyone can believe that there is anything good, about this nasty cult, is absolutely beyond me. Just have a look at how they treat women, who always seem to be the first people to suffer under an opressive regime. One of the saddest sights I've seen lately, was a woman in the Square Shopping Centre in Tallaght, wearing the full burqha, with even a wire mesh covering the eyes. And yet on tv, you can hear some of these women justifing this outfit , saying that its a visual sign of how their bodies are sacred, and only to be enjoyed by their husbands. As if the sight of even the slightest suggestion of female skin, would make men go crazy. What if the men around her were gay?

I'm sure the immans would say that there are no gay muslims, but its probably more true to say that there are no visible out living gay muslims. I remember years ago on the internet, reading the story of two young 16 year old iranian guys, who were hanged in a football stadium for being gay. I remember the haunting pictures of these two young guys, in tears, being driven to the packed stadium, for a public and gruesome spectacle. Can these peolpe not see that they are just brainwashed puppets? I remember being in Egypt 2 years ago, and we stopped the ship at some small town which I cannot recall, but the sounds of the immans were deafening, and I thought to myself it was almost impossible to live in this society and not be muslim. Any sort of religious creed, equals for me, relentless brainwashing.Thats all you know, or are allowed to know. You are born into a particular idelology, educated in it, and expected to follow a particularly rigid path.

I sometimes think of the great writers like James Joyce or Brendan Behan, and of how much guts it took, to strike out using their literary tools, at the repressive regime they were born into. At the moment I am reading Christy Brown, " The life that inspired My Left Foot " by Georgina Louise Hambleton. I literally just picked up this book on sale in Easons, and I am very surprised that we have not heard more of Christy Brown, the author and intellectual anywhere. To think that he painstakingly wrote all these letters to his family members in Kimmage, with such expert craftsmanship of the english language defies belief. Unfortunately I am one of these people who goes on book splurges, with great intentions, but usually it takes me ages to get through them as I usually have around 4 books on the go at the one time.

I believe, one of the main selling points of this book, is that it had been written in conjuction with some surviving family members.They dispel the Hollywood ending of the film version of his life story. Apparently the woman he married was not some benign nurse, but rather a lesbian prostitute who forcibly distanced Christy from his family, by first moving him to Kerry and later Somerset. One think I would strongly dislike (and I'm sure Christy did too) is when some people can only see the disability instead of the person. Mine and his disabilities cannot be neatly hidden away. They are horribly and publicly on view. I dont think I will ever fully accept my physical condition, and limitations that it brings. Its so difficult with FA, when you are deteriorating, and your needs grow bigger all the time, and your independence smaller. I often think that it would have been much easier to have been born this way, at least you don't miss what you never had.

But my over rididng thought is that we as humans go through so much, be it mental or physical. Half the world is either dying of starvation, in the middle of civil wars, having to eek out some sort of subsistance, while the rest of us are being treated for depression, being sexually, verbally, physically abused day in day out, or caught in a merciless rat race, which allows no reprieve. So personally I feel that seeing human beings on their knees relentlessly for some god or goddess, is maddening in the extreme.

I got a fascinating e-mail during the week from an Italian who had read my site and was very impressed by it. Unfortunately he's in Milan so I won't meet him in May. I googled his name, and he is a member of the radical party of Europe, which seems to have many of the same beliefs as I would have, so it seems that the only thing that makes them so radical is their belief in empowering the individual. I signed the on line petition against a ban on stem cell research for therapeutic purposes.

I strongly believe that stem cells will have great benefit in the future. However at the moment, the techonoly is just not there, and it seems to me that a lot of desperate sick people are being fleeced. Of course as the saying goes, "your health is your wealth". I remember chatting with Katie my friend with FA in the UK. She was telling me about a friend of hers newly diagnosed with FA. She was going for some revolutionary stem cell treatment in Holland costing 30,000 euro. The one thing that set alarm bells off for me was that she would be required to go back every 6 months for a top up. Stuff that! For me, if I am paying that much money, I would expect the benefits to be much more concrete and longer lasting.

As I was told, this particular girl has not physically improved that much, and is really clutching at straws. It seemed to me that poor health and money are a perfect recipe for poorly informed choices. There will always be unscrupulous people, who gleefully rub their hands at these unfortunate predicaments. I can't look down my nose too much at these people, as I am the first person into Natures Way, if i read a good review about a particular supplement or vitamin. At the moment, I have just started taking Udos oil, which claims to boost the energy level, improve co-ordination and turbo charge your metabolism. I really dont know if these things work, but even if I am clutching at straws, I'm still only down €15. But I will certainly keep you all updated.

I overheard a discussion recently where they said that money really is the root of all evil. I can't say that I agree with this at all. I think that I would be a lot happier with a couple of million in the bank. I am not sure if I would really like to win a serious amount of money, like the woman in Limerick who won the Euro Millions. It would'nt be nice to have every beggar and tramp in the country, knowing your business.

The thing with money is that you exchange one set of problems for another. Your are not worried about paying the electricity bill, obviously, but I suppose you have other problems, like everyone trying to ride on your coat tails, and not knowing who to trust. There was an interview that I caught with Ozzy Osbourne, he was saying how tough it was growing up in Birmingham. Everyone says that life is tough at the top , but Ozzy said that its a whole lot tougher at the bottom, and this sounds more right to me. Also, not to be a church basher, but is it not ironic that the church preaches very much against excess money, and yet they are one of the wealthies institutions in the world. So obviously they dont practice what they preach, to a large extent.

I am still trying to follow my ebay ambitions. I managed to make my first purchase on Friday of a usb cable for my digital konica minolta camera, which very kindly they stopped producing 6 months after I bought it. I stupidly brought the cable to India, and left it there. I had originally bought 4 concert tickets, one for me and Joe, and the other 2 for assistants. Now Joe is no longer in the picture ( and I'm not sure if Celine Dion would have appealed to him that much anyway) I was trying to sell them on ebay, but there is a part of the selling process that I cannot get past. It is more than likely something small. and I will try to ring or e-mail them tomorrow. It might appear a bit mercenary but I cant afford to give them away and get nothing in return, when they cost me €120. After all, I have holidays to plan and pay for.

I was delighted that my friends in Spain, suggested that directly opposite their parents homem is now an old folks home. My friend said to me that they were thinking that I could use the homes big accessible room, and their staff's services at night time, but that I would be with them all during the day. This sounds like a perfect solution for me , as things are a lot different for me physically than they were 5 years ago, and I would not like to blur the lines of friendship. Anyways I love bingo!

Tuesday 1/1/08: I hope this new year is great for us all. Had a great night at my brother' house next door to us, and we certainly did raise a glass for joe, as the clock struck 12. There is no reverse gear in life, and there is absolutely no point in dwelling too much on what has happened. I am up bright and early, considering the fact that we didn't get in til nearly 3. For people who have spent the last couple of new year's eve nights in bed watching the worldwide celebrations on the tv, this was indeed a departure.. My mother is nursing a hangover this am, terrible aspiring wino that she is! Being half deaf, I was a little lost, in the run up to the midnight hour, as the kareoke competition was in full swing, but we were lucky in that we had people that actually could sing, and not the usual boozed up old cat's brigade! Got talking to a lovely person about her year in oz, and travel in general, until I became so engrossed, that I forgot about the drink in my hand, which promptly went over both of us. I dropped another glass on the floor, requiring another mop up, and trip to the bin. Can't bring me anywhere!!

Thursday 6/12/07: What an exhausting week this has been! I am sitting here at the pc, looking like the back end of a bus, complete with half a beard, a viral infection and a laboured whisper for a voice. Its been almost exactly a week since this crazy nightmare began to unfold. What a void you have left joe, and thanks for dumping me in it!! Now, mother will be on my case non stop, with you offering no welcome distraction.

I knew something was wrong as soon as we pulled up at the kitchen window, So at worst, I thought you had finally succumbed to the effects of the flu, which had wrecked so much personal havoc over the last couple of days and nights, and that you were now in naas hospital for observation, and as a way of giving mother, who had been up with you for the past 72 hours straight, some much needed r&r.

It seemed like I was the last one to know, or at least the last to put 2 and 2 together. Kathryn says she knew the prognosis was really bad, as she heard mother's deadly calm voice on the phone. Not knowing all the details, and not being known for my emotional range (at least not in family circles), I found myself becoming hysterical, especially when the neighbours, relations and family friends started pouring in. Yes, the theatrical irish funeral production was underway.

But the genuine goodness, whch comes out of people at sad times like this, is just staggering. People coming in to take care of all the domestic chores, including answering the phone, which threatened to go into meltdown. It would have been so much easier, if there would have been some advance notice, if you had been in naas for a longer time period, and at least we could have tied up any loose ends, and said our nice farewells. But this was just too abrupt, too hurtful!

I didn't know that you were in the sitting room on the thursday morning, as I was getting ready for work with mother. She was telling me how she had had another sleepless night with you, going from your bed to her bed, to toilet, to sitting in your chair beside the sitting room fire, all in search of some elusive rest. I remember saying that even though the very suggestion of it, would cause you to erupt, that next year, like it or lump it, you were getting the flu jab. The common flu totally knocks us out. The flu strain is certainly becomming more potent, and resistant to the drugs currently on the shelves. This was the same dose, which had landed me in naas 2 1/2 years ago, as my ferocious and constant coughing fit demanded. I had to go there kicking and screaming, no one likes those places. Apparently you went in at 2, and were dead by 5. I like to think that you took in your surroundings, and decided that this was not the place that you wanted to spend your time, artificially being kept alive.

Even though the doctors in naas were great, they could not tell if it was pneumonia or a malformed lung, which was causing undue pressure on the heart. They said they could have saved you, but it would have required a tracheotomy. Mammy wisely said no, on top of everything else, you didn't need this extra disability. What a country we live in, that these forced protracted endings, are viewed as the only and holiest option!

It would have been awful to be visiting you everyday in a hospital ward, respite centre or at best your own bed. There is so much to be said for a quick death. The country is full of nursing homes up and down the island, full to overflowing with the living dead, and my heart goes out to them. I wonder though, would they really have wanted this expensively degrading way to leave, being gawked at daily, living in your own filth and with tomorrow bringing no relief. But living wills have no place in irish law, and I hope this craziness changes soon.

Its exhausting to be crying all day. My body seemed to shut down. Thankfully mary, the GP from dunlavin, who has become a firm family friend, since her own two daughters were diagnosed with FA, was on hand. In every capacity she was excellent, even sitting with mother on the saturday evening, as she couldn't bring herself to view her youngest son' body in the morgue, all the while listening to inane chatter about how you never looked so good. From saturday, mother and I, had an unwelcome return visit from the viral infection, which we thought we had gotten rid of six weeks before. I was doggedly determained to go, but it took a family intervention to stop me. The saturday evening was a horribly cold and wet winter's night with arctic winds, and so for me, it was a choice between going to the removal service, and risk getting pneumonia myself, or saving my energy for the funeral the next morning. I chose the latter.

You probably wet yourself laughing at the state of me on sunday. Hat, blanket around my knees like a geriatric, big sheepskin coat and your warm boots. I had to be strapped into the chair, lest I fall out during a coughing fit. But I was surprisingly quiet during the service. It was almost like you were telling me to "shut the fuck up,this is MY funeral". I had given Dorley the names of some hymns I wanted sung. Here I am lord, Be not afraid and Make me a channel of your peace, which made me cry not only because its so poignant, but because I had chosen it for dad's funeral nine years ago too.

The first part of the mass was nice, with tokens from your life being brought up as offertory gifts, like a dvd ( from your colossal collection) and ipod. I had to stifle a laugh when the priest referred to you as a "beloved parishioner". You could count on one hand, the number of times you had been in church in recent years, especially since dad died. As the mass continued, it was all about jesus, and his little 3 hour stint. The one thing which really annoyed me was one of the prayers, which asked god to forgive him his sins. He was a 25 year old who spent most of his life in bedroom, battling his own body. He didn't even have the opportunity to sin enough to warrant guilt, you thoughtless bastards! Its another reason why I think I'd prefer a secular humanist service at my cremation.

Even when all this began, on the thursday evening, I had said that if anyone says to me, that this is "gods will", or some other condescending platitude, I was liable to knock their teeth in. Such words are simply too hurtful, to be of any consolation at times like this. To their credit, neither religous relatives, or the local priest said this. But it is so obvious that people just do not know what to say, and instead of saying nothing, they feel obligated to say something, and it usually backfires terribly. How are you meant to respond to such stupid questions as how are you? , and how are you feeling?

We did'nt allow your brain to be given over for FA research. For somebody who hated needles and all that good stuff, we knew you would'nt have wanted even your corpse to be interfered with. I have no problem personally, with donating my brain for research, but its an individual choice, and I'm sure we made the right choice for you. The weather is terrible, and this christmas is going to be very difficult to get through, but get through it we must. You had all your christmas presents bought, and you said to Kathryn, that this was going to be the last lonely christmas, and that next christmas we would have her new baby in the house. I guess we all better dig deep, to find the willpower and drive to keep going over the next weeks and months. We would'nt have you back in a worse physical state, for all the money in the world. I gashed my head getting out of bed on saturday, and I just thought to myself, how lucky it is that you dont have to deal with any of this crap anymore.

Well Joe, sleep well. How I applaud you, miss you and envy you!

Sunday 24/11/07

One of my daily rituals, during my week in work is to look at You Tube ( during my unpaid lunch hour). For some reason, I keyed in Dr.Kevorkian, the so called Dr.Death. I hadn't heard any information about him in so long. A google search revealed he had been imprisoned until June of this year, for his help in assisted suicide. On You Tube there is a very interesting segement about him. There is a short video of the brother of a man who Dr.Kevorkian helped end his life. The brother was very articulate and stated that they were lucky enough to live in the same county as Dr. Kevorkian, but still had to sneak him in the house in the middle of the night, and the family members had to leave the room while the injection was being administered for fear of they themselves going to jail. He stated that his brother never wanted to be the posterboy for euthanasia, but that in his view, Dr.Kevorkian did his brother a great service, and should never have spent a night in jail, like a common criminal.

This is a topic that I think about more and more. It is not the case that someone is just having a bad day and wants an easy way out, but people with serious life affecting issues, should be able to control the manner in which they pass on, rather than being forced to live on in their own squalor. Its terrible to think , that a rational capable person does not have the legal right to determine what happens to them, even if they have been in a near fatal accident. Legally even if they had no desire to be kept alive at any cost, thier wishes are not even listened to. I said this to somebody, who told me that they had told their wife that in the event of an accident, they do not want to be kept artifically alive. But as I said to him, that legally your views are totally disregarded and irrelevant,even if you had the most detailed and conscise living will made beforehand. For me it all gets back to the core question of asking "who's life is it anyway?"

I feel I should soften the mood here, its just that this issue stood out for me this week. Work is very quiet and I must say I am not a fan of this time of the year. After nearly a year of searching, I have finally found my Honeybush tea, thanks to the internet and the Dragonfly company in England. There is a South Africian shop on Parnell Street in Dublin and the owner had been trying to get it, but unfortunately, he could only get me a Rooibos version of Honeybush tea. But now I have ten boxes which will keep me going for a while, and it tastes as good as I remembered. It certainly was an awful lot cheaper than the alternative of getting Sabine in South Africa to post them to me. ( God I am easily amused ! )

Sunday 21/10/07

Looking at the ultrasound pics of my sister's unborn child, I was of course amazed at the process of life. To see the photos of the foetus,(which is latin for unborn child, for the "pro-life" people who assume that its some cheap way of verbally degrading a child) wriggling around is impressive, but does not sway me in my pro-choice views. I really wish that the so called pro-life people, would be more interested in actual life, and the conditions that living people have to endure day in day out, as opposed to potential life. I read an interesting article, which stated that a woman's body spontaneously aborts embryos, so the question I read a person asking, was that knowing this, is your God a mass murderer.

Thankfully my sisters pregnancy is going fine, and the doctor said to her that if it was her unborn child, that she would be very happy. Also from what I know medically of FA, that both parents have to be carriers of the gene in order to have a child with FA. Through genetic testing we know that my brother-in-law is not a carrier, so all signs are good. You will never eliminate disability, as the saying goes shit happens, and when it does you have to make the most of any given situation, but for me the best thing about the medical break through concerning the FA gene, is that now we can more or less prevent another generation having to go through this ordeal.

As far as I'm concerned, it would be absolutely unforgiveable, given the medical knowlege available, for us to allow another generation to endure FA. If it was known that the child would have had FA I would hope that my sister would have aborted it. Life is hard enough, without knowingly having a child with hereditary illnesses. This is one of the things that makes me so mad about the pro-life movement, they put all their energies and focus into what goes on in the first nine months, when really life only begins to get tough when the baby is born. Where are the Jesus freaks then? You can be sure they are still on their mistaken crusade, trying to guilt others into giving up control over their own bodies, which in my opinion is a fundamental right. In many ways I am losing control over my physical body, but it just makes me all the more resolved and committed, to advocating that right for others. While I have two fingers and net access, that is exactly what I intend to do.

"If men could have babies, abortion would be a sacrament" is the old abortion right's slogan, which is so true also for different reasons. I believe absolutely in life, and in ensuring that life gives the best for each and every person, but I just do not believe in life at any cost. I remember years ago in UCD the people involved in the pro-life society, are the faces I still see when ever there is an abortion debate on tv. They seem to be so entrenched and steadfast in what they consider to be right, and yet we know there are so many grey areas in the abortion debate. Very little, if anything at all in life, is black and white. So for me it begs the question, are these people "pro-life", or would a better description for them be anti-choice?

When I think of the anger, directed at Dr.Kervorkian, and his help with assisted suicide,it does not surprise me that his opponents are from one and the same category. This life is the only one we can be sure of ,and I think that people should do everything in their power to make life as secure, fun and positive as they can. Also I think it is very galling that these so called pro-life people, who invest so much time and energy in the first unseen nine months, will still be more or less the same people who condemn and ostracise single mothers who keep their children. Indeed for me looking around my community it is ironic that a lot of these prayer group and bible bashers, are now the grand-parents of what they would have previously dismissed as bastard children.

As far as religion goes, I would describe myself in two ways, firstly as a former cult member. What is the difference between a cult and religion? It seems to me that a religion is simply a cult that has been around for a long time, and has been accepted wholeheartedly into the mainstream. The mormon religion was viewed as very much a cult, when it was founded in the mid nineteenth century. Now it is viewed as an esteemed religion, even fielding a candidate for the US presidential election. The second way I would describe myself when it comes to religion, is as a spititual whore, in that I am open to a lot but not committed to a single one.

A few years ago on a plane, I got talking to an English woman, who really opened my eyes. She said her father was in his eighties, physically and mentally as strong as ever, but yet just tired of living. His wife and everyone dear to him had died, and in a sense he had lost his passion for living. So there are a lot of ingredients for living. The way I view it is anyone can die, its living well that is the hard part! But what I believe for sure is that nobody has a right to impose on, or dictate their beliefs on somebody else, and thats what puts me and the Jesus freaks on a collision course.

Sunday 7/10/07

I am appauled at the whole Princess Diana inquest fiasco. A whole ten years has passed, and still it seems that a lot of people cannot, or will not, accept that even princess' can die in car crashes. I think (and I am surprised that it has'nt happened up to now) that Princess Diana, like Elvis, will soon be spotted somewhere, launching yet another conspiracy theory. The fact remains, that if she had been wearing her seat belt, she would more than likely be alive today. Why is there always a need to read more into a situation? She was'nt the first, and wont be the last, to lose her life in a car crash. Perhaps it is easier for Mr. Al fayad to believe that there was some deep dark conspiracy, rather than accept the fact that he hired an alcholic driver. For a start if there was some deep conspiracy,then the perpetrators were nothing more than bungling amateurs. I suppose fiction reads better in papers, fantasy sounds better in interviews, than boring reality.

I have just come off the phone with Vincenzo, who is organising a long hoped for visit to Italy. He is very good in the sense that we are trying to keep down the cost, and make it a trip to remember. May seem almost rediculous to be thinking about next May already, but if you have any special requirements, the more planning the better. If anyone is reading this who knows of personal assistants who can help out without charging the earth, I am waiting for your e-mail!

Wednesday 3/10/07

I am delving into a really good book at the moment, called "Raising your emotional Intelligance" by Jeanne Segal. This topic totally fascinates me, it makes so much sense that there are in reality, so many different forms of intelligance. Someone can be book smart, but socially inept, and will more than likely spend their life working for somebody who perhaps did not get the best grades in school, but through their ability to work well in groups, and to be able to handle whatever comes their way,has risen to the top.

There is a young guy on work experience in our company, who is doing a new kind of Leaving Cert, which is based on pratical experience and project work, as opposed to a few hours in a room at the end of the year, with an ability to regurgitate everything that you have memorized. I remember years ago someone in my class at UCD, treated me so well, and with no hint of pretence or condescention, that I asked her if she had a close relation or friend that is disabled. When she said no, it struck me that she must be very emotionally intelligent. That sort of EQ means that she can see past anything external, and be able to see the person. Whether that person is covered in tatoos or piercings, an emotionally intelligent person knows that you cannot simply judge a book by its cover.

Its very easy to pontificate and just pay lip service to these topics. On an EQ scale I'd have to give myself 3 out of 10, I still lose my temper far too easily, and go from zero to 100 in a blink of an eye, even over trivial stuff. But the good news about emotional intelligance is that it can be developed, and there are definite techniques to help you do so. One of the things I've learned reading this book, is that anger is perfectly natural and normal as an emotion. The problem and difficulty is that it has to be proportional to the given situation. So there is no point being very angry about a given situation, but doing very little about it, and instead taking it out on those nearest and dearest to you. I hold my hands up, and say that this certainly strikes a chord with me.

On a less serious note, I'm still trying to find somewhere else to go for holidays. An Italian has contacted me, and we are planning to go to Rome next May. We are trying to make the whole trip not astronomical but there so many places in Europe I'd like to see, but now with my reality of needing really 24 hour assistance in a foreign country, huge esculating price tags really rule out so many European countries. Italy has been at the top of my list of places I'd love to see for a long time, so hopefully it will come true,

Monday 4/6/07

We tried to put up a better database/blog software here, to make this page easier to navigate, but it just did'nt work out. So for all of you, who have come to this page because you typed in euthanasia, muslim riots,gay marriage,religious cults etc, my apologies, but please take the time to scroll down! This page badly needs to be revamped, as its getting too long winded, but the blog software so far has not been able to fit into this site' template. Anyone with any ideas, please let me know.

Sunday 30/09/07

I have been appauled to learn that the Indian Government, is reported to be spending billions of dollars trying to send people into space, and become a nucleur power. This really was appauling to me, as someone who is just back from India, and has seen at first hand the daily hardships, which so many Indians endure. To see small children fighting over an apple, or to see people sleeping practically naked on bare concrete, surely shows how much better this money could be spent. Someone surely has their priorities mixed up. This is just an arrogant flexing of muscle, based on new found economic prosperity. But surely the sign of any great country, is how well they look after their own least fortunate. Space adventure and military posturing surely has to take a definite back seat to this.

I found the Indians to be a very proud people. When we would stop the car, we would be immediately surrounded by twenty or thirty hawkers, or beggars. But not once did I ever feel unsafe. And it would have been beyond easy to rob me. At the moment, I am trying to digitize and upload video, as I really want to share the remarkable memories which I have. Being on the Ganges, and the festival of aarti in Varansi, was definitely one of the most profound nights of the trip.

The tour guide explained to me, that in Hindu mythology it is believed that all the souls of your departed loved ones, are waiting in this holy town, for you to release their souls from the endless cycle of reincarnationt. The singing, and strong smell of incense, will be a powerful memory for me forever. I am thrilled that I did this trip, but its is definitely getting harder for me to travel, and I can say even now with some certainity, that I do not think I will be back. Not in a bad way, but the world is simply too big to go back to the same place every year. I was looking into going to Israel for Christmas, but I just could not justify spending so much money going at the hectic tourist time. So it looks like, I will have to endure another beyond belief boring, end of year ritual.

It has been so long since I felt that I had anything to put down on this . The last few months were spent thinking and organising India and that consumed all my time. I suppose no news is good news, and my life is fairly uneventful otherwise. I now do not regret spending so much in India, because at least now I'm back to my normal frugal ways.

I am constantly amazed at the power of the internet. Everyone from long lost cousins, to people with ataxia, from Australia to America have contacted me. One woman in America with ataxia wrote and asked me if I knew that Brendon Murphy had travelled to Switzerland, to end his life with FA. I had heard of him vaguely, I knew he was from Northern Ireland, and that he did a lot of research around the world, indeed i think we had exchanged a few general e-mails sometime back.

I dont claim to know what was going through his mind, but then again i fully applaud his human right, to say enough is enough. It is very annoying to me, that he had to travel all that way to a strange enviornment, in order to avail of this. The sad part of the story for me, and the part that really makes my blood boil, is how animals are treated so much better than humans. If a dog had a terminal illness, or was in pain, the owners would be almost legally bound to bring the dog to the vet, but us humans are supposedly in some other category, and are at the whims and mercy of a religous inspired legal system. It is my earnest hope that this changes soon.

A good friend has recently e-mailed me, to tell me that because of his advancing MS, that now his bowels have given out,and his travelling days are over. I was very lucky to have met him in May, and hope that my own travelling days, have a little longer lifespan.

I read recently in some book, that we as humans have chosen to come into our physical bodies to accomplish some task. I found this to be absolutely fascinating, to think I have expressly chosen this physical body to go through life with. I dont know is all of this psycho babble or just the preserve of people who have the luxury to spend all day thinking of such issues, but at the moment, its taking up more and more time and energy to do the simple things, like getting dressed in the morning.

Tuesday 23/8/05

I have been thinking about live 8 etc and the whole idea of "charity". To me that c word is just an invented word to make people who really dont want to give at all, feel a little better about doing so.I personally dont believe at all in that word, and what does it make the person or people on the receiving end, charity cases??????? It is very difficult to stomach bono & co making impassioned pleas for more money, when he doesnt pay any tax in this country and his personal fortune would equal the GDP of one of these third world countries.

By all means, use your celebrity status to shine a light on an issue such as this, but leave it at that. I'm sure your wife's good influence has rubbed off on you, and maybe you have indulged all your material wants and desires, and are now turning your lofty eye to issues of world peace and poverty. Although, I do give him full credit, he could very easily just continue to sing, tour and rake in millions and live in unthinking luxury, but he is using his position to shine a light on these issues. There are deeper issues at work, keeping the peoples of these countries enslaved to subsistence. I dont think I'd trust any of these governments to distribute aid among their own countrymen, when they are so busy fighting civil wars with boy soldiers.You dont have to go far to see how fundamentally selfish we are.

In all big cities, there are people sleeping rough, while crowds of people rush past them, spent from a frantic days shopping or off to another pub or social event. It is sometimes very hard to be optimistic in this day and age, and search for a glimmer of humanity in people. Maybe we wrongly look for in others, the qualities and strenghts which we feel we lack. Or maybe we have the power to make a difference within us all along, but we just need someone or some occasion to unveil it?

Tuesday 6/9/05

My 31st birthday, never thought I'd make it this far and hopefully there won't be too many more of them. Time is a strange thing, you're either fighting it like mad, or waiting impatiently for that egg timer to empty the fuck out post haste. The craziest thing is that when most people finally get to a stage of comfort and stability in their lives, their time is up. The best thing is to ignore time as much as possible. Where is it written that you are meant to live a long and happy life and die peacefully in your sleep with your rosary beads in your clasped hands? A great saying that I heard goes "I am not growing older, just growing". Its impossible not to become wiser as you go through the ups and downs of life, of course I am mortified by some of the things that I have said and done in the past, but they can only serve on reflection as learning experiences. I have no regrets, because I can use the lessons of the past, if I am smart, to help with my today and tomorrow.

Tuesday 13/9/04

I'm in a good mood as I have managed to book my spanish friends into the same hotel as myself. They can only come for a weekend, but its better than nothing. I hope I can organise a day trip somewhere while I'm there. Its nestled in the french pyrenees after all. I'm really looking forward to getting lots of video. Its a very special place, but I'm not into organised prayer days run by people on power trips. As someone said in work, and its so true, that the best part of a holiday is the looking forward period before it.Usually when I get my hopes up about something, it turns out to be the kiss of death, so I'm going to just try and remain quietly optimistic!

Monday 31/10/05

I am really sick of this increasingly unreliable and weakening body which is letting me down more and more, and forcibly pushing me toward dependancy. My left leg now is gone. It makes sense, as far as muscles go "use it or lose it". Its a pain in the hole to see your body go to pot. More and more people find it very hard to decipher what I'm saying. Personally I think that it is the very worst thing that can happen, when your speech goes you become an invisible prisoner in your own body. I dont think there should be nursing homes, there should be euthanasia centres!

There is so much in life that you have absolutely no control over, life throws obstacles at you, and in your lifepath and you duck and weave around or get crushed by them. I think with ever increasing certainty that the one fundamental thing you should have complete and unequivocal control over is your own body! Put aside physical problems, its why I believe in being pro choice. Luckily I will never be in that situation, but I can only imagine how furious I would be to be forcibly stripped of choice and control over my on body. Abortion is murder definately, I dont think it does women any favours to be misled into believing that they are just getting rid of some cells. Few, if any, issues are black or white and I do not believe in the value of life at any cost or regardless of its condition.

Tuesday 11/11/05

Had my car accident last thursday and its strange being without it. My car was everything to me, but it was over 8 years old and I should have upgraded it before. Thankfully no one else was involved (just me and a wall) which I am so grateful for. I am not going to rush to find a replacement, instead I am going to a mobility centre to find out exactly which car and aids will suit me now.I think it is better to pace myself. Thankfully I work locally, so my sister drops me in and my mother collects me ( back to those days again).Dependency is a bitch, but hopefully something positive will come out of this.

Saturday 10/12/05

Why do we continue to fool ourselves into comforably living with this false sense of immortality, and why also are those who supposedly believe so strongly in an afterlife, so attached to this one? Recently someone of whom I am indebted to, passed away after a short illness at 58. The usual lamentations went up that he had died too young, but in reality this person had done and achieved so much (as his thronged funeral mass showed). It is not the number of year that is important, but what you do with them!

Saturday 17/12/05

I'm really not a fan of this time of the year. The tacky commercialism and subtle indoctrination (which usually begins in september) mean that by the time christmas does indeed come around, it is almost anti-climactic. I am just back from dublin (went with our great neighbour luoise, the car situation with me is in limbo!) and we were up there by 9.30. As the hours go by it becomes very uncomfortable. Where do all the people come from? I think they are largely the men who avoid the shops like the plague during the year, and who force themselves to get out and panic buy given the time of year, lest they want to spend christmas day eating beans on toast with a party of one!

I think christmas has reverted to its pagan end of year origins, and it should be more a celebration of humanity, and reaching out to others, rather than getting yourself into debt (will never understand that one) and trying to buy yourself into someone else's good graces. I talked to a friend recently who is off to Barcelona on tuesday for 3 weeks. What a perfect time of the year to get away! Actually weather wise we've been fairly lucky here, but its just the escaping to a different scene that's the point ( actually come to think of it, maybe she's not going far away enough!)

Sunday 18/12/05

I have been reading an interesting article on suicide, but it got me thinking about the bigger picture. Is there ever a "normal" way to live or (die for that matter).Why does someone have to exist on, in order to satisfy someone else's moral code. The line that stood out for me was " suicide is a crime of forgetfulness, which leaves heartaches which last a lifetime". True, but I just cannot even include the word "selfish" (or "crime") in the same sentence as suicide, even if there is some shock value to it.

Do you not think the person has not thought at length about who and what they were leaving behind, before concluding that death was the better option. There is some frightening statistic in Ireland, that places suicide as the no 1 killer of people between 15-24 with males 4 times more likely to go down that road than females. As time goes on, I find myself becoming more blase about issues concerning life and death. Death is as natural as life, they are the two ends of this big conveyor belt we call existence. When I hear that someone has died, no matter how tragic the circumstance, it has less and less of an impact.Of course, I'm not that cynical that I can't empathize with them, but they are gone and there is no turning the clock back! Don't delude yourself into thinking that you will be together again, at some later date. Its not going to happen!

Friday 23/12/05

I was genuinely happy for this move to legalize gay unions. Now, I'm not a fan of marriage full stop, be it woman-woman. man-woman, man-man whatever, but it just confers legal rights and it will stop the crazy legal situation where a gay partner can be shunted to the margins, and overriden by his partners blood family upon his death. What annoyed me when watching this lesbian union in the north, was the anger directed at them by the religious ( and more than likely repressed gay) bigots.

Thankfully their power and influence is on the wane, and when you hear the pent up anger they have, against those who refuse to live the repressed lives they lead, you can't help but say "good riddance" to those who share in that particular mindset. Really, those zealots are like the classroom bully who constantly picks on the effeminate classmate, trying to over emphasize their supposed straightness, and then years later that former classmate, whose school days were so traumatized, bumps into their assailant in a gay club. This is well documented.

Thankfully we are coming into what I call a post god age, where people can't shelter anymore behind old philosophies and doctrines. As far as sexuality goes, we all have one ( whether we express it or not), your into guys, girls or both. Its a part of your makeup , like the colour of your eyes. There is usually no great epiphany or dramatic realisation when it comes to sexauality, and certainly not so much of a choice issue. As if somone would choose to be part of a hated and persecuted minority. There is so much nonsense around this issue.

Monday 26/12/05

Well, all this nonsense is over for another year. I look forward to hitting the sales, even though there is very little I need or even less want. At long last I am reading The DaVinci Code, and I can see what all the fuss finally is all about. I was probably one of the last people to read it, it was a book that I had seen everywhere, from backpacks to bus stops, cars to train stations. Finally my brother got it for me. I am engrossed by it, it is very cleverly written, with enough twists to always keep you eager for the next page, but all feeding into one cohesive story.

I have my polo outside, and myself and my uncle went out to have a look. It is definately not for me, even the indicator switch is too short, and hard to get to.There is a safety feature in the polo, that means because it has a creep function, before you can turn the ignition key, you have to have keep the break depressed at the same time. Bar being blessed with three hands, how you are meant to do this in a car with hand controls is absolutely beyond me. It will be going back, but the car salesman is so nice and has given me time to think it over.

One day, I will finally put down all about the car issue, but at the moment it is just too raw. I can't justify spending thousands on modifications, considering that I have a progressive illness, and that even those modifications may not be enough this time next year. I think I am better off taking my time, and concentrating on keeping a healthy bank balance. My friends collected me on saturday in their renault clio and that is the car for me. Even the seats were so comfortable. In Ireland though finding an automatic car is like finding a needle in a haystack, but I made the mistake of just grabbing the first one that came along. Act first, think later seems to be an inescapable part of my personality, and has always caused me a lot of problems. I seriously need to learn the emotionally intelligent art of delay gratification.

Wednsday 28/12/05

As the new year approaches, I'm no gushing bag of gratitude about anything, but even I have to concede that I am very fortunate to have the family that I have. To go through whatever obstacles life throws at you without knowing there are people around you, with your own best interests at heart, be they friends or blood family must be the worst. Its very easy ( for me at least) to feel like a solitary punchbag, but it sure does lighten the load to know there are those around who help shield you somewhat or help you roll with the punches. For all those people, who feel disenfranchised, cornered, trapped or hopeless, my strong enduring hope, is that somehow those feelings can be detected, and some positive light shone on them!

Friday 3/2/06

How dare these muslim extremists try and forcibly silence anything or anyone who dares offend them.The sight of huge protests by poor brainwashed fanatics is laughable and frightening at the same time. Yes, being brainwashed with a particular ideology, and being poor and having nothing to lose, is a dangerous mix. I have just heard on t.v, a very young rabble-raising muslim, trying to fan the flames by saying this is almost like another crusade against the muslim world. What nonsense !

I don't know much about these cartoons, but they have obviously had the desired effect of creating controversy and world attention, much I'm sure to the cartoon creator's delight. I was listening to the radio yesterday, and there was a woman who worked as a nurse in saudi arabia for 10 years. They had to completely conform to the muslim way of life, cover up head to toe, and were forbidden to practice their christian religion ( or any non islam belief practice). Indeed a prayer group they set up was forcibly broken up by the saudi police! And yet they come here, and try to impose their beliefs with the help of strongarm tactics. I don't bloody think so!

Long live free speech, and by the way, I remember the furore over the last temptation of christ. Of course it was controversial and inflammatory but I'm sure that was the point. If you are so vehemently opposed to anything that challenges, or even derides your beliefs, and your reaction is uncontrolled anger, than dare I say it, but your beliefs are not very sophist for good measure, I'm going to put a "Do not Disturb" sign on my coffin!

Thursday 16/2/06

Stuck here at home with the flu, and my satellite has gone, so I don't even have the joys of daytime television to keep me company. I mentioned before how, at the moment, I am stuck at this precipice of dependancy, clawing furiously, while all the time slipping into this world of personal assistants, and more & more aids, while having the last gleaming vestages of independance, slowly stripped from you.Would it not be an infinately more humane society, if having rationally thought everything through, you could calmly setup an appointment with your doctor and he/she could come out to you, to your familiar and comfortable surroundings, and give you the injection. Personally, I think it is the mark of an insanely uncaring society, and twisted belief system, that compels people to live on, often contrary to their own wishes and desires. I dont see why an issue like this has to be shrouded in, and bogged down by other peoples belief systems. Yes, a nice long rest sure does sound good at this stage, and jus coffin!

Thursday 24/2/06

I just saw this disturbingly real report on tv, about young people with disabilities who, for reason of disability, and subsequent dependancy only, are made to live out their years in nursing homes. For the moment I am "lucky" to have my family, but I can see that terrible day fast approaching! Here is the page of one woman with FA in that boat, whose site I just found.I also just found this site, which purports to stop, reduce or reverse the symptoms of FA, using chinese herbs While I sort of believe in the power of chinese medicine, and I'm aware that FA is not found in asia at all, when money comes into the equation, red lights go off inside me. In this case $399.95 for a 3 month supply, seems to be an open invitation to all with FA, who are increasingly desperate, and willing to clutch at any straw. Hell, it looked good to me too, until I saw the price!

Tuesday 28/2/06

(pic:www.rte.ie)

My well worn saturday ritual is to head to dublin for shopping, cinema, meeting a friend etc. This saturday as I'm still getting over the flu, and not firing on all cylinders, I went by car to a shopping centre on the suburbs of the city with my brother. Normally, I might have gone into the city centre. We heard on the radio that the ulster unionists were planning a march that day. I don't consider myself very patriotic at all, but I felt like going in and waving my tricolour. The orange order are viewed by the majority in the republic as I'd imagine black people in mississippi view the kkk. They are a bunch of sectarian bigots, and the thought of them peacefully marching, and airing their viewpoints, was never going to happen. However the thugs who rioted, played right into their incendiary hands. Even though I cannot imagine how angry I'd be if I were living in a british colony in 2006, I am glad that those morons, who will petrol bomb you without a second thought aren't in charge. "A nation once again" is a laughable fantasy, that everything is going to be ok, once ireland is reunited. Give me a break! I think the majority in the republic, are aware that that day would be like going from the frying pan into the fire. I base this claim on the fact that sinn fein have only 5 TD's elected in the republic. Why is it never talked about, that the majority of people in the republic are catholic unionists?

We all know the history, and many of our grandfathers, and those who went before them, often paid a heavy price to ensure that we had control over our own country. The north for me is six counties stuck in limbo, we don't want/need the hassle they bring, and yet the reality is there is a million+ people up there who consider themselves british. Its a bit too late to ask them to piss off back to scotland! So there are 2 camps up there and both have to be respected. Terrible atrocities have been committed on both sides, but neither community has a monopoly on pain, hurt and suffering. I think they are finally on the right road, self governance with more dublin/less london influence. I remember seeing on tv, that the majority of british, resent having a large proportion of their tax money, being spent on this tiny colony. When there were almost daily killings and bombings up there, the anger and hatred were relayed through tv here almost daily, and we all heard the stories of catholics just up and staying with relations south of the border, just to avoid the chaos and headaches caused by the july triumphalist marching season.

Personally, even though some of their candidates are powerful speakers, I could never in good conscience, vote for sinn fein. There are still vigilante activities, drugg trafficking continued by the IRA, and it is insulting to be told now that they are one and the same. But I would like to shake gerry adam hand, so what does that say about me? One of my favourite films ever is "In the name of the father", and I have for a long time wanted to go on pilgrimage, to milltown cemetary in belfast, to visit the grave of Guiseppe Conlon. Hopefully one day..............

Sunday 9/4/06

I was in the city centre yesterday, and I saw a guy in a wheelchair with a collection bucket in his lap. Now, he could have been collecting for any number of good causes, but what is the image and impression which lingers? That old tired charity model of the poor unfortunate guy in a chair rattling his tin. I personally would/could never put myself in that position, where you (perhaps unwittingly) perpetuate negative stereotypes, no matter how good and just the cause is. The ultimate cost is too high, think forward not backwards! God, I must look so pathetic lately. Due to a combination of the chair I've been in (quickie ti) and the progression of FA, my lower legs shoot out all the fuckin time and just refuse to sit on the footrest. It is an absolute nightmare going anywhere, as literally I am stopping every 10 seconds to put my feet back ( or have them put back by kindly strangers). My occupational therapist says that it is a neural responce, caused by the poor posture I currently have in this chair. I am almost in a constant reclining position, and when the legs are'nt bent at 90 angles and splay out, then the brain thinks this is the new natural position, and adjusts accordingly . Yesterday, I just gave up and let them stick out, even though I got a lot of stares. What a sad sight I must make, reclining position, splayed out legs and an increasingly unintelligible voice.But gotta keep going, not gonna stay in my room all day.Read a fabulous page about a woman's battle with MS and her faith in alternative medicine, and the power of the mind, which is something I am increasingly interested in too!

Monday 17/4/06

This is a very recent photo, taken 2 weeks ago in one of my favourite shops. I did buy that carved buddha head in the end. Notice how deformed my feet have become, pointing inwards as they do. That is the old chair, which had absolutely no back support, and consequently had me in a reclining position for most of the past two years.Easter is over thankfully, didn't go anywhere even though I had good friday and the bank holiday monday, as I am saving money for my trip to egypt. I met this group over the net who offer accessible tours of egypt, and I now completely realise that I just cannot put off anything, so may 20-28 you can find my decrepid ass in egypt. If it all comes to pass successfully, I have no doubt that it will be an amazing experience, but I am trying not to get too excited about it as I know from past experience that that is just the kiss of death ! I am going to hire an assistant, to help out with dressing in the morning and evening. Its meant to be a hassle free holiday after all, so I will try and keep the problems to a minimum. Its costing a bit extra, but so be it! Have finally got my new rgk chair, and as expected,it addresses some problems while presenting a few new ones. It certainly makes dressing more difficult because your anchored in a dipped position at the back. Its also heavier, and more awkward to assemble, and even though it has me in a more upright position, it is very hard to tilt back, making it much more difficult to manoever around even small curbs and the luas tram ( a helpful man took a run at the small step last week, and while my old chair would have tilted back to accomodate it, I nearly toppled out on my head). So its fine for me, but bad for others!

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Monday 1/5/06

Have decided to get a bit of culture and stop being a stranger in my own country. By that I mean, taking time to go to the places that usually only tourists frequent. Last week it was the national gallery and this saturday it was the turn of christchurch cathedral , which I had heard so much about, but am ashamed to say even though I had passed it around a million times, had never gone into. It is ok accessibility wise, but there are always helpful people around, and even the dean helped me around to a side door to view the crypts.Its well worth a visit and it is an active place of worship, with daily services and visiting choirs.Making my way over to o'connell street, I was helped by 3 turks who had just come from an islamic conference. They were very nice and gave me a book and dvd on mohammed. I told them i'm not a fan of religion ( I think jesus, mohammed, buddha etc are all a pack of pushy brainwashing cunts, or maybe its their followers who do them such a disservice????) Just as I thought, its a huge list of do's and don 'ts that serve to illuminate AND indoctrinate.

Saturday 1/7/06

Have gotten the doc out again about my arm. The pain is unnatural, and my hat is off to anyone who suffers physical pain. I can't sleep at night, but at least now I'm on painkillers and paracetomol, so hopefully the worst is over. It turns out that I more than likely have a rotator cuff injury, sustained from breaking a fall in egypt a few weeks ago. This apparently is a common injury for long term chair users. Any independance you have goes down the toilet. Putting any pressure on the right arm results in excruciating pain. Superwoman is finding it extra tough, as I can't even turn myself in bed without an eye watering stabbing pain. I just dont believe in pain killers, people running for them at the slightest inconvenience, pain is your bodies way of alerting you that there is something wrong. Thankfully my arm loosens up a good bit during the day, so I have still been able to go to work, but have decided to take action, so I am now using Aulin gel. Hope it works because I am tired of boring, long inactive and sometimes fiercely painful weekends!

Saturday 29/7/06

Am still in pain, and it seems sometimes that there is no end in sight.Another weekend inside, although the only benefit is that I am saving an absolute fortune. Although it has gone from an excruciating electrocuting pain, to a less sharp dull pain, but it still makes simple tasks very difficult. Getting out of bed and dressed is much harder, my poor mother is called on ten times more, Will this inflamed shoulder ever fuck off and go away?? I think this country, and other like it, whose laws have been shaped by the christian cult, are BARBARIC. The doctors instead of prescribing useless painkillers,. whose only capacity is to numb the effects, while overlooking the root cause, should be able to put people out of their misery. You honestly would'nt let a dog suffer half as much as what humans are expected to put up with. Well its a very true saying, " anyone can die, the hard part is living".

Sunday 30/7/06

Help has finally arrived thanks to my local chemist and a drug called "Cataflam". I felt it work after the very first tablet. I got a good night sleep for the first time in two months, and its just great to be able to stretch out and grasp something or even to be able to push yourself without wincing pain. What a difference a day makes, yesterday I was begging my mother to go in and get my neighbour's gun and put me out of my misery. There seemed to be no end in sight to the agony, to the point where I was beginning to think that I would'nt be able to go on my holiday to south africa even though its six weeks away. Now thankfully I have this problem on the run, I can focus my energies and attention on some of the others. I must try and stretch out today, it feels good to get out of the chair, and try to keep the other parts working. Also its just good to see the world from a different angle.

Thursday 10/08/06

Here's an email message I've just sent in to the most popular radio talk show in Ireland:

10/8/06 Hi Gerry, What a society we live in ! A society with mixed up beliefs and misplaced values, that debatedly treats animals with more respect, dignity and compassion than any of us mere humans whose bodies are going to pot, and looking on the bright side can only get worse.

I spent today in a meeting with the local doctor, various nurses, occupational therapist and reps from the irish wheelchair association and health board. Myself and my youngest brother have the great fortune of having the progressively debilitating disease Friedreich's ataxia, which slowly robs you of all independence and dignity, so today at 31yo I was asked if I have objections to going into a nursing home ( for a period of time while my mother is alive, to give her a break, and longterm if she kicks the bucket in the morning).

This question didn't faze me in the slightest. It's a nightmare reality which I have been anticipating since I was 15. I am at the stage now where I view death as the inevitable companion of life, but it annoys me so much that the country is full to overflowing with nursing homes full of the "living" dead, whose only intention is to protract life at any (and usually a debt inducing) cost. If a dog or other pet was seriously sick, the owner would be almost obliged to bring him/her to a vet, and have their suffering ended, and therein lies the crux of my problem.

Now I have a lot of fight left in me, and know that life asks of you, only that which it thinks you can handle, but its outrageous to me that someone can be stripped of their personal power, and control over their own body and destiny, in order to forcibly acquiesce with a legal system which was shaped by an ideology which says suffer suffer suffer and get your reward in your eternal life. Well nuts to that, jesus himself only suffered for a few hours!

Thankfully we are begining to wake up, and realise the importance of not expecting all of us to follow the same old tired formula. I believe very much in the good in people and life, just not life at all costs! What do your listeners think gerry of euthanasia and living too long?

wonder what type of responce I'll get????

Friday 11/8/06

I had a good chat with my boss today (yes work is that slow, its the silly season and everyone is on holiday) about how recently I gave money to someone who was doing a sponsored parachute jump for the irish wheelchair association. He said that 50% goes to the IWA and 50% to cover his expences. In retrospect, I am annoyed, as why should he ask people to pay for his hobby?? This happens pretty often, its like they are using the good cause as a vehicle to tug on people's heartstrings, but they still get their hobbies paid for. Of the people rattling buckets outside shopping centres, how many of those collecting are paid? ( I recently saw on tv, a woman admit to being paid 20 euro per hour for collecting, that's a sizeable chunk of the collected money gone straight away, and not where the donors thought it would be going to either!) And where does that money come from? So the question is how much of the money raised actually goes to the good cause? I wonder if you would ever find a celebrity, or any of the social elite at a "charity" fundraiser, at a hospital wiping drool off a person, or just chatting to them onepon one? I am going to be much more sceptical and discriminating now, and what annoys me most is that those who give the most to these people, are usually the ones who can least afford it.

Thursday 31/8/06

Its on the news about iran trying to assert their right to pursue nuclear research and developement. I think its revolting that unstable, but more relevant, just plain impoverished countries, should sink their national time and resources into such destructive pursuits, when there are so many more pressing needs. Would it not be better to put your money into getting your country's children out of lives of abject poverty, and trying to subsist any way they can, rather than pour all that money into new more ferocious ways to kill and maim, and just generally make people's lives worse? I know lot of people are questioning why should america deny/object to other countries right to do what they want to. But like it or not, america is the policeman of the world, and surely its best for an accountable man, who can be replaced, to have his finger on the button.

Sunday 29/10/06

This following quote has nothing to do with stem cells, but I just found it, and thought it was incredibly profound;

"Life is not a journey to the grave with the intention of arriving safely with a pretty, well-preserved body. The goal is to skid in broadside, tires smoking, body all dented, leaking fluids, gas gauge on empty, thoroughly used up and worn out, proclaiming, 'Holy shit, what a ride!'" 'Klassikar 2005'

I have been emailed a website about stem cells and FA. I recently saw Michael J Fox on t.v appealing for u.s support for stem cell research. It was very moving and powerful to see this once very able person, now fighting with all the energy he can muster, against his own body. As far as I am concerned, there are many things in life over which you have no control, but the one thing you should have complete control over is your own body.

While I do not feel that stem cells at the moment are the way to go for me with classic FA, I feel the potential positive benefits are limitless. At the moment, to me, they are still too experimental and strongly smack of monied desperation. I could not justify going to china for numerous injections, to delay what may very well be, an unwelcome inevitability.

If there was a greater degree of certainty, it might entice me more. If I could somehow be guaranteed that straight after an infusion of stem cells I'd be running around, then I might consider it. I sure am tired of being a regular visitor to the floor, and dependancy on others is a total bitch, but knowing my luck i'd scrimp and save to get to china, only to be in a car crash on my return journey. Are stem cells going to solve all problems? No,but I sure would'nt say no to moving up a rung, on the health stepladder! There are plenty of things to fight in life, apart from your own body.

What annoys me most and the principal opponent to stem cells, is the whole religious argument which argues that we should suffer, suffer and we'll all be wonderfully healthy specimens in the next life. Thankfully that viewpoint, (which is incredibly condescending) has less and less subscribers. There can be no reconciliation between these two viewpoints, they are two opposing, and totally different approaches and attitudes towards life. I read an interview recently, where the comedian Graham Norton was asked whether he believed in heaven and hell. He said "yes, but in this life", and I entirely agree.

This is the only life we can be sure of, and there is no encore, so anything that can lighten your load or make life more bearable, I'm all for. Even if stem cells were guaranteed to work, there will always be bad and difficult times, so I guess the point I am trying to make, is to get your mind in check first. Will you be a more humane, considerate and humble person, or just another prick who can race ahead, and let the door slam in someone else' face? Stem cells are the way to go, but just make sure you get them for the right reasons!

Thursday 21/12/06

Another year is closing, and hand on heart, it has'nt been a bad year, in spite of my increasingly decrepid wheelless body.I had the most amazing trip to cape town, and even though this would be a perfect time of the year to get away, I am looklng forward to the opportunity to just relax and recharge the batteries. I bought a book in fish hoek, having been impressed by the title. "The God Delusion" by Richard Dawkins is proving to be a good buy, and providing plenty of food for thought!

Friday 29/12/06

Got the flu, and all the associated aches and creaks, the day after christmas. Maybe its just as well to get it out of my system now, while I am still on hlidays, but I really want to get my account of my trip to cape town done, highlight some of the pitfalls, and promote Slattery's wonderful direct flights from dublin which just save so much hassle!

Sat:30/2/06

Still not feeling the mae west, so I thought it was not a great idea to try and brave the crowds in this freezing weather.Browsing the net, I read a story which infuriated me, an italian man who had muscular dystrophy and who had spent years battling for the right to die, (probably better to say right not to be kept artificially alive) finally got help on sunday, when a doctor removed his respirator thereby allowing him to die. Now the church has refused him a funeral, and is asking for the doctor to face murder charges. I have just posted this responce on a yahoo blog site;

"I am motivated to write by a couple of recent events. One is the assisted death of Piergiorgio Welby in Rome on Dec 24th, who had been forcefully kept alive for nine years, and the other is the execution of Saddam Hussein this morning. Both men have died, but I can’t see any religious sect, demanding the executioners of Mr Hussein, the men that prepared him and ensured that he died, to be treated as murderers (there are calls for the doctor who assisted Mr Welby to be charged with murder).

Which person has been treated with more dignity, the dictator who wrought havoc on so many, or the man paralysed by muscular dystrophy, who had lapsed into a coma in 1997 and had been forcefully and artificially kept alive since then? It is cases like this, which sadly reveal just how much we are still shackled by the dreary beliefs of religious cults, whose powerful influence is far from gone.

Put people back in control of their own lives, with the knowledge and certainty, that the buck stops with them on all accounts, and that they do not have to act like the puppets of life, but rather with the poise of a scriptwriter.Sometimes you have to ask yourself what kind of a society we live in ! A society with mixed up beliefs and misplaced values, that debatedly treats animals with more respect, dignity and compassion than any of us mere humans whose bodies are going to pot, and looking on the bright side can only get worse!

Recently I spent a morning in a meeting with the local doctor, various nurses, occupational therapist and reps from the irish wheelchair association and health board. Myself and my youngest brother have the great fortune of having the progressively debilitating disease Friedreich's ataxia, which slowly robs you of all independence and dignity, so today at 31 I was asked if I have objections to going into a nursing home for a period of time while my mother is alive, to give her a respite break, and longterm if she kicks the bucket in the morning ! This question didn't faze me in the slightest. It's a nightmare reality which I have been anticipating since I was 15.

I am at the stage now where I view death as the inevitable companion of life, but it annoys me so much that the country is full to overflowing with nursing homes full of the "living" dead, whose primary intention is to protract life at any (and usually a debt inducing) cost. If a dog or other pet was seriously sick, the owner would be almost obliged to bring him/her to a vet, and have their suffering ended, and therein lies the crux of my problem. Now I have a lot of fight left, but its outrageous to me that someone can be stripped of their personal power, and control over their own body and destiny, in order forcibly acquiesce with a legal system which was shaped by an ideology which says suffer suffer suffer and get your reward in your eternal life. Well nuts to that, jesus himself only suffered for a few hours!

Thankfully we are begining to wake up, and realise the importance of not expecting all of us to follow the same old tired formula. I believe very much in the good in people and life, just not life at all costs!"

(apologies, I know the last bit is a rehashed previous entry, but I physically can't type for very long, but the sentiments are the same!)

Thursday 18/1/07

I think jade goody will really regret going back into the Big Brother house. She is someone who really does herself no favours, but whereas before her laughable stupidity was endearing ( in a kind of thank god I'm not that dense way), this horrible racist side to her is very offputting. I absolutely do not understad how english people especially can be racist, after all it was they who went all over the world, imposing their way of life, and way of doing things everywhere they could. Now they are being colonised themselves,to an extent, they don't like it one bit. It is all right for the indians to package jade's perfume, but she does'nt like them in her face.I am glad she is going to be hit where it hurts, ie losing sponsors, and surely even this shows that there are a lot more genuinly accepting people, who realise the world is now moving to a global village with no revese gear! I think it must be kind of inevitable for an english person not to have a chauvinist attitude considering they are brought up in school with the history that for a longtime, they were the undisputed rulers of the world.

Saturday 20/1/07