Me & FA

I've known since my teenage years what lay before me, that I was going to become more dependant in so many ways. It didn't make it any easier, sometimes I think maybe it would have been better to be born para, or to become one completely and suddenly, rather than be in a position where your body is constantly declining and there isn't a damn thing you can do to prevent it. Its like being in a car which is hurtling towards a brick wall. 



No wonder, I fought the wheelchair for so long, preferring a club footed pretence of normality, clutching onto anything to stay upright and then stomping off whenever the coast was reasonably clear.. I always considered a wheelchair as accepting defeat and giving in to Friedreich's Ataxia, and becoming one of " them". So I staggered around (how I didn't get run over is amazing) missed LOTS of school, before finally dropping out. I personally hate the way people in chairs or with whatever disability are viewed. You are either an innocent little angel, or an angry victim. Well I am neither! I can be as nice as the next person, or a real ba****d (I am trying hard to keep the language in check, just so this can appeal to as wide an audience as possible).That's a huge thing that happens when a wheelchair etc comes into your life. The totality of the individual is often stripped away, you are no longer a full person with needs, desires and expectations, you are the one dimensional little love in the chair. Honestly, sometimes I'd like to have a gun, and blow some fuckers heads off (the above self imposed rule didn't last too long, but don't worry I am all talk and no action.............usually) 



If you want a more detailed look at the medical cause and implications of Friedreich's Ataxia, check out Kate's site. As I said before, I am personally tired of narrow medical web sites. I wish there were more site's like kate's, that put a bit of personality and heart into a site on Friedreich's Ataxia which otherwise can be weighed down by medical terminology. Living with Friedreich's I often feel emasculated, taking one step forward and two steps back. I have good days where I am focused, strong and enthused, and I have lots of days where I feel like a decrepid old man, who can barely muster up the energy to push myself around, and whimper by way of communicating. 



Actually speech is a major issue. I envy the ability, to be able to articulate your own thoughts and views in a strong, clearly enunciated way. My voice, is increasingly slurred, to the point where sometimes I can barely understand what I've just said. So its understandable to me, that lots of people think that I am mentally challenged. People put what they think is 2 & 2 together and act accordingly, even though in reality they are coming up with 64.Sometimes I think " maybe its no loss not having a nice strong clear voice anyway, if you have nothing important to say", but there are plenty of people who talk bullshit, but I totally respect their right to do so. 



I really am convinced that whether or not its because of ego, a lot of people almost have a need to feel superior to those around them. Its their insecurities I know. At some of my dark times, I think maybe there's no loss in having a weak and slurred voice, if you have nothing significant to say. But it sure is a terrible feeling not to be able to articulate and convey your thoughts, I sometimes feel like I'm at the bottom of a well, and you're trying and trying to get yours thoughts out, but sometimes it just doesn't happen. 



It is also why I am such a strong supporter, of people being truly expressive and authentic to themselves. You have an opinion, and a voice to articulate it, go right ahead! Do not waste your own precious time trying to keep everyone else happy, and living your life to this end. First of all it is an impossibility to keep everyone happy. If others don't like or can't accept it, so be it. Maybe its better to cut ties rather than persist in a futile interdependency. One of my favourite sayings is "It is better to be hated for what you are, than loved for what you are not". I really admire strong people who put their views or lifestyle across without any desire for approval or applause. One of these days I am going to go to a gay march to just applaud the participants. Talk about an oppressed minority! I really admire people who live their lives for themselves and not for others. At the other end of the spectrum, I really admired Pope John Paul II (a contradiction almost, but true). 



I'm at the stage now where being spoken down to, or even worse spoken over, does not make me lose any sleep. For me it all comes down to emotional intelligence and stereotypes. We all have stereotypes, stereotypes are useful and serve to inform our behaviour. However when you are a slave to your stereotypes, that your rigid set of beliefs are so entrenched as to be set in stone, therein lies the problem. If all you can see is the external, whether it's the wheelchair, skin colour, dress sense, tatoo's, piercings whatever; than you need to do some self improvement. 



I can gauge in a few minutes, the attitude of someone. Its ALL in the approach, are they talking down to you and if they are I just dismiss them and move on. ).No matter how you came to be in a chair in the first place, you generally tend to be lumped together. I use a wheelchair, my speech and movements are affected but my brain is fine (most times!) and my spinal cord is fine and I have 99% feeling. Having said all of this, the last thing I would want is to be involved in some disability rights movement, talking about access issues and ramps all day. 



You are the sum of your parts, true, but over concentrating on one part, no matter how fundamental it is would be enough to drive me to distraction. One incident, which happened to me some months ago really got me thinking. There was an elderly lady in a chair with a young woman, I pulled up wanting to know if we were all waiting in the toilet queue, and I directed my question at the younger woman. I could not believe it. After all this time….. My only answer in hindsight is that we can all be dumb. 



I am reading an excellent book at the moment (having lately gone book shopping on amazon.com) called "Emotional intelligence and why it can matter more than IQ" by Daniel Goleman, and its just articulating thoughts and ideas which I have long felt to be true. It is our emotional intelligence, our ability to empathize, be aware and considerate of others as well as ourselves that dwarfs iq in terms of intelligence. We were emotional long before we were rational, but the good news is that emotional intelligence can be built on (am only 50 pages in yet, so I'll let you know how another time). 



Although as I said before, I don't do myself many favours in group settings. When you don't have a strong clear voice you don't tend to instigate many conversations, which at times does not give out a great impression. Sometimes I feel, I would gladly exchange the feeling I have in my lower body for a nice clear strong authoritative voice. 



A wheelchair is a mobility tool, nothing more, nothing less. However it often seems that I am subsumed by the chair, being called wheelchair man or more often wheelchair boy. No wonder I fought it so vehemently. I remember when I was 16, and my balance was real bad, so bad that everywhere I went, I would get angry stares by people convinced that I was stoned or drunk.I would wait for as few people to be around as possible before I'd start moving. I viewed a wheelchair as a final sign of defeat that would turn "me" into one of "them". I literally "walked" until I dropped. 



Don't get me wrong, I will never be one of those people who happily delude themselves by thinking that they have been sent a particular obstacle as a specific test. Challenges, obstacles and hurdles of whatever type are just a part of life, and it is up to us to arm ourselves with as many coping skills as possible, in order to deal with them. Yes, life can be a bitch, but it will always be exactly what you make of it. One saying that I heard recently, and which resonated with me is "if its meant to be, its up to me". You are in the driving seat of your own life, we are not just being swept along, although I have to admit that I feel very often that life is just passing me by, and that I am a spectator, rather than an active participant in it. 



I go into the nursing home from time to time to see my friend. Part of the reason I don't go in more, is truthfully because I want to stay away from those places for as long as I can. At the moment, luckily my mother is still going strong, but I know of other young people who aren't as fortunate, and have to stay in a nursing home. I was having a conversation recently about this, and I was saying that the country is full of nursing homes which are mostly depressingly similar. You see the same people rocking back and forth, or putting in the day as best they can. It is very possible to be just watered and fed, and to be alive in name only. I think people should me more concerned about living too long, than dying too young! I remember at 11, after exhaustive medical tests and being brought around to every mystic and church group in the country for laying on of hands, that I had Friedreich's Ataxia, and the doctor,actually with a smile on his face said " people with Friedreich's Ataxia can live to be 65". He said it with the air, that he was almost bestowing on me some great life sustaining news. What the fuck is good about that news? If I am like this at 30, even 35 is not a nice concept, and 65 sounds like a complete nightmare. 



To be in a body that is still mechanically functioning when the lights have gone out upstairs, is as bad as when the active brain is caught inside a body that pays no heed to it. And yet there still is such a debate over euthanasia. Now, I know this opens up a quagmire of issues. One of the things I really don't like, are quality of life judgements. It is not for someone to look at another and comparing them to some illusory norm, to direct some value judgement at them.



But when the individual themselves chooses when and how the end should be then that has to be acted upon. It is not for the law, (which in this country especially has been shaped by the church) to supercede the right of the individual and strip them of power, choice and control over their own lives. . A person should not be compelled to live out their lives to the bitter end under the illusion that an eternity of bliss awaits. I am not at that stage yet,for a variety of reasons which I might go into another time. Having said that, I am not in any physical pain, apart from any bump sustained during one of my frequent visits to the floor. Maybe being in constant physical might make me sing a very different tune. 



Death is as natural as life. I have noticed an awful lot of decline especially over the past two years. The strength that I used to have in the legs is almost completely gone, my posture is crap. Do you notice those infomercials that are always selling this and that that promises to build your core muscles. Well I am at the stage now, where my core or trunk muscles are so weak that if I am not firmly wedged into the chair then I am as floppy and unstable as a baby. Part of the reason also why these comments are disjointed, is that I just can't type for too long. So, I keep coming back all the time, and adding on various bits depending on the day and mood. In school, I used to do my exams with the help of an emanuencis, so please bear with me, and if you read anything really out of place or puzzling, email me. 



I think dependency, is just the worst feeling. I am at the stage now where I am caught between not being bad enough for an assistant, and yet there are everyday things which I am finding it harder to do, like writing or trying to open a bottle. I haven't tied shoelaces in years, and wear only slip on shoes. Now however my feet have become so deformed that slip ons are just not working, so I get someone (usually the governor) to tie the laced up shoes. I find now, that unless the shoes are VERY tightly on,that they too will come off, so I am now looking at getting a pair of ankle boots. I must be so pathetic to watch sometimes. I went to McDonalds recently, and despite thinking that I was looking fine, the girl asked me if I needed help eating (she later explained that her dad was a chair user too, after falling out of a second floor window while drunk). I have the handshake of a little old lady, and the coordination of a raging alcoholic. I don't like it, will never accept it, but things aren't going to change anytime soon, so the best I can do is just keep on going. 



What's in a word? A LOT! The word "handicapped" really annoys me. Its just an old word, with a lot of negative historical baggage, that is dismissive and falsely all encompassing. At least the word" disability" has the word ability in it. You wouldn't dare use words like nigger, faggot, dyke etc, and yet I remember a newspaper headline entitled "Would you abort a handicapped child?" Words such as "handicapped" and "cripple" are widely spoken and written about with impunity. Well again in my case, I don't get personally offended, I just think its a poor reflection on whoever has perpetuated that old word. Someone is going to have to be a bit more inventive than to name call, in order to offend me. I don't consider myself to be some politically correct fanatic, but words are more than just an arbitrary collection of letters. They are a gateway for our emotions. If we could just be more aware (myself especially included) and think more before we open our mouths or commit something to writing, then it will be a better world. 



They had, what was hailed as a medical breakthrough some years ago with Friedreich's Ataxia. They found the defective gene responsible for Friedreich's, the analogy being that they had found what amounted to a needle in a haystack, and they could now focus all their research and energies on this gene. There was definate excitement and optimism, but more than a decade later I view these research efforts with a healthy dose of scepticism. In my opinion, knowing that we will be the last generation with Friedreich's is prize enough. On the basis of knowing the defective gene, it means (as far as I know) that my brothers and sister who do not have the symptoms of Friedreich's Ataxia, but carriers of the gene and there was a possibility of them having kids with Friedreich's Ataxia. With genetic testing and knowledge of the defective gene, this possibility is averted. 



I am not hoping and praying (who's listening) for a cure, and I don't have a pair of skates on standby. If I could walk and talk fine in the morning, sure I'd be delighted. I'd spend ages walking tall confidently and independantly everywhere,long barefoot walks through fields and on beaches, but there are plenty of others who can walk and talk, and still are far worse off than myself. All that realistically would happen,is that I would take a step up the problem hierarchy ladder, ok so I could walk/talk etc fine, but you've still got to earn money and go through all the myriad challenges which living entails. Friedreich's Ataxia is my reality, as well as my foe. 



To be honest, I place a lot of hope in stem cell research and I don't see much validity in the arguments against it. There are enough challenges and obstacles in life, without having to deal with a war with your own body. I can only see the religious argument as the only one against it. I have just read an article on the net, by a disabled guy advocating stem cell research and hypothesizing about some utopian disability free society. Well, as well as sounding a bit too Aryan, its not going to happen anytime soon. I personally welcome any advance which will help people live their own lives, and make their own choices to handle whatever pops up, rather than be forced to live their lives according to arbitrarily defined morals and ethics. 



I sometimes think of what my life would have been like had Friedreich's Ataxia not entered into and dominated the picture. And it sure does dominate. The house was converted years before I needed the wheelchair, thoughts of what I would do in university were governed by the accessibility of the place, back then there was practically no choice.Any thoughts of getting or holding down a job are plagued by access and transport problems, and as the saying goes " no mun, no fun" or in better english, just that in many ways you will never have true or full independance until you have financial independance. Believe me, I spent a lot of time at home on subsistence welfare, unemployed and feeling unemployable. 



I don't care if you are working as a shop assistant or whatever, but especially when it comes to whatever sort of disability, work gives your day and life great structure. After third level, I found it an uphill struggle to get anything. In many ways its totally understandable. In a competitive work environment I'm not a very attractive candidate with a slurred voice and all the assorted bundles of joy that go with a wheelchair and Friedreich's Ataxia. I got a full time job some years ago with an engineering company called Newbridge Engineering Services (or NES) and along with my car, its among the really important things in my life. Its only 10 minutes from home, strictly 9-5 and the way that I view it, is that I am getting paid to get out of the house. Its not a lucrative career job, but I am very well treated in a nice atmosphere, and it keeps the remaining brain cells that I have active. 



The last couple of years especially have led to a re-evaluation for me about what the word "dignity" entails. Very little, if anything, embarasses me anymore and in many ways its a good thing. When you have to be picked up off the bathroom floor by your mother and sister, you learn not to sweat the small stuff. I think for a lot of people dignity is concerned with trying your hardest not to let others see your flaws and vulnerabilities, when really it should be about how you carry yourself in the world in spite of them. 



One of the truest sayings that I have ever heard (thanks oprah) is "if you always think of what you don't have, you will never have enough" I think unfortunately thats me in a nutshell. I know there are people physically way more worse off than me, with no feeling, being fed etc but knowing that doesn't help. This is my reality, but what I would like, and hopefully am already on the path to doing so, is to get mentally tougher, in a way that your mind is fortified and strong with as many coping mechanisms as possible, to deal with a declining physicality. I know its the mind and your own emotional strength, that are the key factors in dealing with whatever crap life throws at you. 



I really need to get out more, travel , join groups whatever. Its top of my new years resolution list every year, but eventually filters out.There is strength in numbers and as someone said to me "there are no strangers, just friends you haven't met yet". I need to focus more on the things that I have, and can still do. I have a great mother and family, and live a pretty good, and at times fulfilling life. I dont know (or want to know) whats around the corner, but I will never give in, and I'm not going quietly! I've known since my teenage years what lay before me, that I was going to become more dependant in so many ways. It didn't make it any easier, sometimes I think maybe it would have been better to be born para, or to become one completely and suddenly, rather than be in a position where your body is constantly declining and there isn't a damn thing you can do to prevent it. Its like being in a car which is hurtling towards a brick wall. 



No wonder, I fought the wheelchair for so long. I always considered a wheelchair as accepting defeat and giving in to Friedreich's Ataxia, and becoming one of " them". So I staggered around (how I didn't get run over is amazing) missed LOTS of school, before finally dropping out. I personally hate the way people in chairs or with whatever disability are viewed. You are either an innocent little angel, or an angry victim. Well I am neither! I can be as nice as the next person or a real ba****d (I am trying hard to keep the language in check, just so this can appeal to as wide an audience as possible).That's a huge thing that happens when a wheelchair etc comes into your life. The totality of the individual is often stripped away, you are no longer a full person with needs, desires and expectations, you are the one dimensional little love in the chair. Honestly, sometimes I'd like to have a gun, and blow some fuckers heads off (the above self imposed rule didn't last too long, but don't worry I am all talk and no action.............usually) 



If you want a more detailed look at the medical cause and implications of Friedreich's Ataxia, check out Kate's site. As I said before, I am personally tired of narrow medical web sites. I wish there were more site's like kate's, that put a bit of personality and heart into a site on Friedreich's Ataxia which otherwise can be weighed down by medical terminology. Living with Friedreich's I often feel emasculated, taking one step forward and two steps back. I have good days where I am focused, strong and enthused, and I have lots of days where I feel like a decrepid old man, who can barely muster up the energy to push myself around, and whimper by way of communicating. 



Actually speech is a major issue. I envy the ability, to be able to articulate your own thoughts and views in a strong, clearly enunciated way. My voice, is increasingly slurred, to the point where sometimes I can barely understand what I've just said. So its understandable to me, that lots of people think that I am mentally challenged. People put what they think is 2 & 2 together and act accordingly, even though in reality they are coming up with 64.Sometimes I think " maybe its no loss not having a nice strong clear voice anyway, if you have nothing important to say", but there are plenty of people who talk bullshit, but I totally respect their right to do so. 



I really am convinced that whether or not its because of ego, a lot of people almost have a need to feel superior to those around them. Its their insecurities I know. At some of my dark times, I think maybe there's no loss in having a weak and slurred voice, if you have nothing significant to say. But it sure is a terrible feeling not to be able to articulate and convey your thoughts, I sometimes feel like I'm at the bottom of a well, and you're trying and trying to get yours thoughts out, but sometimes it just doesn't happen. 



It is also why I am such a strong supporter, of people being truly expressive and authentic to themselves. You have an opinion, and a voice to articulate it, go right ahead! Do not waste your own precious time trying to keep everyone else happy, and living your life to this end. First of all it is an impossibility to keep everyone happy. If others don't like or can't accept it, so be it. Maybe its better to cut ties rather than persist in a futile interdependency. One of my favourite sayings is "It is better to be hated for what you are, than loved for what you are not". I really admire strong people who put their views or lifestyle across without any desire for approval or applause. One of these days I am going to go to a gay march to just applaud the participants. Talk about an oppressed minority! I really admire people who live their lives for themselves and not for others. At the other end of the spectrum, I really admired Pope John Paul II (a contradiction almost, but true). 



I'm at the stage now where being spoken down to, or even worse spoken over, does not make me lose any sleep. For me it all comes down to emotional intelligence and stereotypes. We all have stereotypes, stereotypes are useful and serve to inform our behaviour. However when you are a slave to your stereotypes, that your rigid set of beliefs are so entrenched as to be set in stone, therein lies the problem. If all you can see is the external, whether it's the wheelchair, skin colour, dress sense, tatoo's, piercings whatever; than you need to do some self improvement. 



I can gauge in a few minutes, the attitude of someone. Its ALL in the approach, are they talking down to you and if they are I just dismiss them and move on. ).No matter how you came to be in a chair in the first place, you generally tend to be lumped together. I use a wheelchair, my speech and movements are affected but my brain is fine (most times!) and my spinal cord is fine and I have 99% feeling. Having said all of this, the last thing I would want is to be involved in some disability rights movement, talking about access issues and ramps all day. 



You are the sum of your parts, true, but over concentrating on one part, no matter how fundamental it is would be enough to drive me to distraction. One incident, which happened to me some months ago really got me thinking. There was an elderly lady in a chair with a young woman, I pulled up wanting to know if we were all waiting in the toilet queue, and I directed my question at the younger woman. I could not believe it. After all this time….. My only answer in hindsight is that we can all be dumb. 



I am reading an excellent book at the moment (having lately gone book shopping on amazon.com) called "Emotional intelligence and why it can matter more than IQ" by Daniel Goleman, and its just articulating thoughts and ideas which I have long felt to be true. It is our emotional intelligence, our ability to empathize, be aware and considerate of others as well as ourselves that dwarfs iq in terms of intelligence. We were emotional long before we were rational, but the good news is that emotional intelligence can be built on (am only 50 pages in yet, so I'll let you know how another time). 



Although as I said before, I don't do myself many favours in group settings. When you don't have a strong clear voice you don't tend to instigate many conversations, which at times does not give out a great impression. Sometimes I feel, I would gladly exchange the feeling I have in my lower body for a nice clear strong authoritative voice. 



A wheelchair is a mobility tool, nothing more, nothing less. However it often seems that I am subsumed by the chair, being called wheelchair man or more often wheelchair boy. No wonder I fought it so vehemently. I remember when I was 16, and my balance was real bad, so bad that everywhere I went, I would get angry stares by people convinced that I was stoned or drunk.I would wait for as few people to be around as possible before I'd start moving. I viewed a wheelchair as a final sign of defeat that would turn "me" into one of "them". I literally "walked" until I dropped. 



Don't get me wrong, I will never be one of those people who happily delude themselves by thinking that they have been sent a particular obstacle as a specific test. Challenges, obstacles and hurdles of whatever type are just a part of life, and it is up to us to arm ourselves with as many coping skills as possible, in order to deal with them. Yes, life can be a bitch, but it will always be exactly what you make of it. One saying that I heard recently, and which resonated with me is "if its meant to be, its up to me". You are in the driving seat of your own life, we are not just being swept along, although I have to admit that I feel very often that life is just passing me by, and that I am a spectator, rather than an active participant in it. 



I go into the nursing home from time to time to see my friend. Part of the reason I don't go in more, is truthfully because I want to stay away from those places for as long as I can. At the moment, luckily my mother is still going strong, but I know of other young people who aren't as fortunate, and have to stay in a nursing home. I was having a conversation recently about this, and I was saying that the country is full of nursing homes which are mostly depressingly similar. You see the same people rocking back and forth, or putting in the day as best they can. It is very possible to be just watered and fed, and to be alive in name only. I think people should me more concerned about living too long, than dying too young! I remember at 11, after exhaustive medical tests and being brought around to every mystic and church group in the country for laying on of hands, that I had Friedreich's Ataxia, and the doctor,actually with a smile on his face said " people with Friedreich's Ataxia can live to be 65". He said it with the air, that he was almost bestowing on me some great life sustaining news. What the fuck is good about that news? If I am like this at 30, even 35 is not a nice concept, and 65 sounds like a complete nightmare. 



To be in a body that is still mechanically functioning when the lights have gone out upstairs, is as bad as when the active brain is caught inside a body that pays no heed to it. And yet there still is such a debate over euthanasia. Now, I know this opens up a quagmire of issues. One of the things I really don't like, are quality of life judgements. It is not for someone to look at another and comparing them to some illusory norm, to direct some value judgement at them.



But when the individual themselves chooses when and how the end should be then that has to be acted upon. It is not for the law, (which in this country especially has been shaped by the church) to supercede the right of the individual and strip them of power, choice and control over their own lives. . A person should not be compelled to live out their lives to the bitter end under the illusion that an eternity of bliss awaits. I am not at that stage yet,for a variety of reasons which I might go into another time. Having said that, I am not in any physical pain, apart from any bump sustained during one of my frequent visits to the floor. Maybe being in constant physical might make me sing a very different tune. 



Death is as natural as life. I have noticed an awful lot of decline especially over the past two years. The strength that I used to have in the legs is almost completely gone, my posture is crap. Do you notice those infomercials that are always selling this and that that promises to build your core muscles. Well I am at the stage now, where my core or trunk muscles are so weak that if I am not firmly wedged into the chair then I am as floppy and unstable as a baby. Part of the reason also why these comments are disjointed, is that I just can't type for too long. So, I keep coming back all the time, and adding on various bits depending on the day and mood. In school, I used to do my exams with the help of an emanuencis, so please bear with me, and if you read anything really out of place or puzzling, email me. 



I think dependency, is just the worst feeling. I am at the stage now where I am caught between not being bad enough for an assistant, and yet there are everyday things which I am finding it harder to do, like writing or trying to open a bottle. I haven't tied shoelaces in years, and wear only slip on shoes. Now however my feet have become so deformed that slip ons are just not working, so I get someone (usually the governor) to tie the laced up shoes. I find now, that unless the shoes are VERY tightly on,that they too will come off, so I am now looking at getting a pair of ankle boots. I must be so pathetic to watch sometimes. I went to McDonalds recently, and despite thinking that I was looking fine, the girl asked me if I needed help eating (she later explained that her dad was a chair user too, after falling out of a second floor window while drunk). I have the handshake of a little old lady, and the coordination of a raging alcoholic. I don't like it, will never accept it, but things aren't going to change anytime soon, so the best I can do is just keep on going. 



What's in a word? A LOT! The word "handicapped" really annoys me. Its just an old word, with a lot of negative historical baggage, that is dismissive and falsely all encompassing. At least the word" disability" has the word ability in it. You wouldn't dare use words like nigger, faggot, dyke etc, and yet I remember a newspaper headline entitled "Would you abort a handicapped child?" Words such as "handicapped" and "cripple" are widely spoken and written about with impunity. Well again in my case, I don't get personally offended, I just think its a poor reflection on whoever has perpetuated that old word. Someone is going to have to be a bit more inventive than to name call, in order to offend me. I don't consider myself to be some politically correct fanatic, but words are more than just an arbitrary collection of letters. They are a gateway for our emotions. If we could just be more aware (myself especially included) and think more before we open our mouths or commit something to writing, then it will be a better world. 



They had, what was hailed as a medical breakthrough some years ago with Friedreich's Ataxia. They found the defective gene responsible for Friedreich's, the analogy being that they had found what amounted to a needle in a haystack, and they could now focus all their research and energies on this gene. There was definate excitement and optimism, but more than a decade later I view these research efforts with a healthy dose of scepticism. In my opinion, knowing that we will be the last generation with Friedreich's is prize enough. On the basis of knowing the defective gene, it means (as far as I know) that my brothers and sister who do not have the symptoms of Friedreich's Ataxia, but carriers of the gene and there was a possibility of them having kids with Friedreich's Ataxia. With genetic testing and knowledge of the defective gene, this possibility is averted. 



I am not hoping and praying (who's listening) for a cure, and I don't have a pair of skates on standby. If I could walk and talk fine in the morning, sure I'd be delighted. I'd spend ages walking tall confidently and independantly everywhere,long barefoot walks through fields and on beaches, but there are plenty of others who can walk and talk, and still are far worse off than myself. All that realistically would happen,is that I would take a step up the problem hierarchy ladder, ok so I could walk/talk etc fine, but you've still got to earn money and go through all the myriad challenges which living entails. Friedreich's Ataxia is my reality, as well as my foe. 



To be honest, I place a lot of hope in stem cell research and I don't see much validity in the arguments against it. There are enough challenges and obstacles in life, without having to deal with a war with your own body. I can only see the religious argument as the only one against it. I have just read an article on the net, by a disabled guy advocating stem cell research and hypothesizing about some utopian disability free society. Well, as well as sounding a bit too Aryan, its not going to happen anytime soon. I personally welcome any advance which will help people live their own lives, and make their own choices to handle whatever pops up, rather than be forced to live their lives according to arbitrarily defined morals and ethics. 



I sometimes think of what my life would have been like had Friedreich's Ataxia not entered into and dominated the picture. And it sure does dominate. The house was converted years before I needed the wheelchair, thoughts of what I would do in university were governed by the accessibility of the place, back then there was practically no choice.Any thoughts of getting or holding down a job are plagued by access and transport problems, and as the saying goes " no mun, no fun" or in better english, just that in many ways you will never have true or full independance until you have financial independance. Believe me, I spent a lot of time at home on subsistence welfare, unemployed and feeling unemployable. 



I don't care if you are working as a shop assistant or whatever, but especially when it comes to whatever sort of disability, work gives your day and life great structure. After third level, I found it an uphill struggle to get anything. In many ways its totally understandable. In a competitive work environment I'm not a very attractive candidate with a slurred voice and all the assorted bundles of joy that go with a wheelchair and Friedreich's Ataxia. I got a full time job some years ago with an engineering company called Newbridge Engineering Services (or NES) and along with my car, its among the really important things in my life. Its only 10 minutes from home, strictly 9-5 and the way that I view it, is that I am getting paid to get out of the house. Its not a lucrative career job, but I am very well treated in a nice atmosphere, and it keeps the remaining brain cells that I have active. 



The last couple of years especially have led to a re-evaluation for me about what the word "dignity" entails. Very little, if anything, embarasses me anymore and in many ways its a good thing. When you have to be picked up off the bathroom floor by your mother and sister, you learn not to sweat the small stuff. I think for a lot of people dignity is concerned with trying your hardest not to let others see your flaws and vulnerabilities, when really it should be about how you carry yourself in the world in spite of them. 



One of the truest sayings that I have ever heard (thanks oprah) is "if you always think of what you don't have, you will never have enough" I think unfortunately thats me in a nutshell. I know there are people physically way more worse off than me, with no feeling, being fed etc but knowing that doesn't help. This is my reality, but what I would like, and hopefully am already on the path to doing so, is to get mentally tougher, in a way that your mind is fortified and strong with as many coping mechanisms as possible, to deal with a declining physicality. I know its the mind and your own emotional strength, that are the key factors in dealing with whatever crap life throws at you. 



I really need to get out more, travel , join groups whatever. Its top of my new years resolution list every year, but eventually filters out.There is strength in numbers and as someone said to me "there are no strangers, just friends you haven't met yet". I need to focus more on the things that I have, and can still do. I have a great mother and family, and live a pretty good, and at times fulfilling life. I dont know (or want to know) whats around the corner, but I will never give in, and I'm not going quietly!