Living with friedreich's ataxia

Just back from an amazing week in Italy. I will do a full report shortly. The gem of a company I found which made this trip possible was www.accessibleitalianholiday.com. It is a small company, which opens up this great country to wheelchair users.

The way I would describe Friedreich's Ataxia, is that your body is set on a self destruct course. I feel like I have been fighting a daily battle with my own body forever, (well since 11yo anyway) and at times I am just immensely battle weary.

It is surprising how your thoughts, views, and opinions change, or better said, become refined and distilled, when your own body is breaking down, and just generally going to shit, before your very eyes!

I don't want some polyanna site, proclaiming to everyone how I cope with FA everyday with the help of jesus (deliberate small j) Friedreich's ataxia is a total bitch, which I honestly wouldn't wish on a dog, but it is my reality, so I just better get on with it!

I am going to use this site, as (a somewhat) coherant vehicle for topics such as my deepening espousal of all things pro choice, whether it be euthanasia, stem cells, living wills etc. Living in a thankfully waning catholic ireland, these are still taboo subjects, but I do believe in empowering the individual, rather than continuing to give away/over your voice. Read what I have written about inner power. I believe strongly and categorically, in the inherent value, worth and dignity of life. I just don't believe in life at all costs........

I have a certain fear about discussing such issues here. No matter how well thought out the arguments behind my thoughts are, people dismiss them, as they think I am driven by anger and frustration, rather than by any rationale, logic or brain power. I still have a few functioning brain cells people!!!!!!!!!!

I am fascinated by issues such as spirituality, and although the catholic cult, that I was born into, did at one time, bring its own degree of comfort, the thought of mankind being on its knees forever, for a person who only suffered for a few (self inflicted) hours, proved to be too galling. I'm not sure if I believe in some great intricate cosmic plan,where everything is secretly mapped out. We are for sure the controlllers of our own destinies, and while I don't believe everything happens for a reason. I certainly believe in doing the best with what you've got!

Sorry to break it to you, and to burst that bubble of immortality that a lot of people seem to live with, but regardless of whether you are Mr or Mrs super active and productive, ultimately you might even have less of a life impact, as someone who lives in a nursing home. I think this is my crude way of saying that we as a human race, are more alike than we are different.

I am in awe of how resourceful, we as humans can be, as a favourite saying goes "its not the size of the dog in the fight that matters, but rather the measure of fight in the dog". To find out other people's life coping strategies and mechanisms, might well be one of the ultimate aims of this site. The margin heading of Friedreich's ataxia will take you to a page I had originally entitled us & them. It deals with how shallow people can be, and how foolish it is to take people at face value, thereby remaining a slave to your stereotypes.

Everyone is on their own charted course, and the one thing that I am trying hard not to do anymore, is to compare myself to others my age. Talk about head wrecking, mind numbing absurdity. When other people my age, having done their world travels, are now concerned about careers, a mortgage, perhaps a partner and a kid (or both), I am worried about falling during a transfer from the bed or loo, and putting money aside for a nursing home, if my mother drops dead in the morning. Yes in the hierarchy of problems, I'm at the lowest of the low, gazing enviously upward!

So, to give expression to some issues on my mind, I am going to take up my two index fingers and pound them for all they are worth. The whats new page is my soapbox and commentary on whatever issue takes my fancy, or just plain gets on my nerve, ranging from muslim (religious) extremists to gay marriage. I am tired of looking up Friedreich's Ataxia, and only finding impersonal medical type pages which are very one dimensional.

There are pages on my travels to egypt and south africa. and the specific problems you can encounter if you intend to travel abroad on your own, and with a wheelchair/friedreich's ataxia. Well hopefully this is going to be a therapeutic process for me, so let the process begin........

PS Love to get feedback,lots of people are visiting this site from all over the world, so get in touch with me via the contact page!