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
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 something 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
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!!!!!!!!!!
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.
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
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.