Mortality and Ataxia

I can’t remember the time when I didn’t know that having my particular disability meant that the length of my lifetime was shortened.  By shortened I mean, barring any freak accident, my lifespan will not be as long as that of an average person.  You can't actually die from of ataxia (and it is not communicable!), it is not that simple.  Premature death is due to the complications that having a base code genetic defect causes.  For example; thickening of the heart muscle eventually leading to heart failure.

Because I understood this (though not in detail) from such an early age, it was and is just another fact and so this knowledge does not depress me and it is not a sensitive subject for me to talk about.  Don’t get me wrong, this in no way means that I want to die anytime soon…I’m not ready yet, I haven’t finished!

However I didn’t realise that this fact affects those around me as well (is that narcissistic?).  Well my slow decline into death is all about me, isn’t it??

No, actually it isn’t.

I only realised that this knowledge influenced others when I was 26 (shut up! I know that is quite a long time but in my defence, it never came up in conversation before ok!).

I was having a conversation with a friend of mine.  I had known him for a few years but the exact details of my condition had never come up before (he is able-bodied and just accepted me as I am without asking details!).  I can’t remember how the conversation started but the memory of how it ended remains fresh in my mind.  Though I am willing to bet that he doesn’t remember it!

 ME: “…Well if you google my condition it gives a life expectancy of 30-40 years, so that kinda makes me on the wrong side of 25!”

Watching as my friend falls silent and his face noticeably changes from cheerful, to serious, to horror, to grieving sadness in about 5 seconds flat.

I would be happy to never see that expression on anyone’s face, about anything, ever again.

Firstly, before I continue let me just say that a google search has given the same life expectancy answer for at least 15 years so do not believe everything it says.  *Disclaimer: It is not Googles fault that the research articles it finds have not been updated!

Many of the people I know with FA are nearer their 50’s and their quality of life is still good.  Also, in general, healthcare is always improving and enabling people to live longer and healthier lives.

To me, because I grew up with this understanding, it was a flippant remark.

To him, my death would matter.

It wasn’t that I didn’t understand the tragedy and gut-wrenching heartache that death causes (see Daniel blog entry).  It was just that I had assumed that my slowly impending demise was all about me.  I mean I am the person this is happening to.  Right?

Wrong.

Here’s why:

When you have a life-limiting physical disability which forces you to rely on others to the point at which you would be unable to survive without their intervention, your decline, your disability and your eventual death will deeply affect those giving you their time, assistance and love.
To be blunt - this shit happens to everybody around you too.

I guess  I learnt from this that living with my declining disability isn’t just about me coping it is also about helping those you love to also cope with it and not making it any harder than it already is, on the people around you.

A form of disability related social responsibility – felt by me anyway!

Also, if I try to consider the feelings of others closely then I have the added bonus of feeling less of a burden.

 So yes, I am I saying that as well as trying to deal with an unrelenting, disability I feel that it is also very important to try and lessen the impact of my situation on others.

This is seriously difficult and gets more so as my condition progresses.  In reality this might mean ‘hiding’ some of my disability from those around me but the improvement in quality of life is immeasurable.  If the people around me are happy, I am too.  Happiness spreads like a plague if you let it.

*hiding for example the chronic pain – tell people about it too much and they get bored of hearing about it.  No one likes a whinger!  Be empowered, take action, see a Doctor (again!).

I guess the moral of this story is that your behaviour, no matter who you are, will affect the lives of others.  So, in the words of the great Adam Hills, ‘Don’t be a dick!’.