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 did'nt last too long, but dont 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 dependancy, 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 have'nt tied shoelaces
in years, and used to 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 dont like it, will never accept it, but
things are'nt 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 would'nt 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 dont 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 responcible
for Friedreich's Ataxia, 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 they are 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
dont 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
dont 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 reevaluation 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 doesnt 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!
