Never Give Up.......Motor Neurone Disease.

Sunday, November 25, 2007

Focus on life..


I sit back and focus on what has been and is happening to me at this moment in time. My condition is slowly and steadily marching along a predefined path with little changes here and there. Most of those changes are noticed by me on an almost weekly basis and I take them in my stride ( no pun intended ) and get on with life.
To be living with this illness you have ( I think ) to be able to focus, not only on the long road ahead but the short falls just in front of you. To have some belief and trust in, not only of those helping you, but being able to help yourself.
We all put our bodies on the line, so to speak, in an almost daily ritual of stress and strain and somewhere along the line, right around the world, something will cause some of our bodies to stop working on a normal basis. That something is off course ALS/MND. Why, we don’t know.
So, our will to focus starts early with most of us and if we are lucky we can carry that will, that wanting to stay one step ahead, to try as best as our bodies will let us, to lead a life, if somewhat restrained, as normal as possible.
So what do we ( I ) focus on…staying alive is number one. To be able to hold my bowl of wheatbix in the morning followed by my cup of tea. To roll over in bed. To get up from the computer and grab hold of my walking frame. This all involves focus…to move from my lazy boy to the frame. To transfer from the mobile wheelchair to the front seat of the car, that is a lot of focus. To get through the day without major upsets.
Such a small word but when you have ALS/MND it can become the center of your universe. Food of course, as our condition continues to deteriorate, becomes a focal point of prime importance and the focus centres on whether or not you are able to eat and drink as you had previously. Sadly that is not the case with a lot of people suffering from ALS/MND.
It is stated that women can multi-task where as the poor male can only focus on one thing at a time. I have to laugh to myself here as that statement is in all probability quiet true.
Focus on one’s family is of course paramount and especially if you have young children. How do you tell them what is happening to you. How do you explain that you will be leaving them. This is where your families come into the picture. Because the focus is not all one way. And I think if you are a solo parent diagnosed with ALS/MND it must be so much harder without the support of a partner or spouse .
Older children these days seem to take things in their stride and are able to cope a lot better but they too will come to realize the importance of your being in a situation where being part of a close knit unit will not only help them but you as well.
Living with ALS/MND is a ‘bummer’ to put it mildly and so everyday the task of staying that one step ahead, to be in focus , is very important to us all. As I sit here at my computer my focus is on the keypad, to try and not hit the wrong keys, to make sure that I am able to use the mouse without to much trouble.
Most people don’t even realize that they use this ability of their’s, to focus on what they are doing and its not until you are in a position, with a disability, where the importance of having to focus becomes a key part of your life.
So, where to from here….my focus now of course is getting the ’peg’ put in and to see how my body reacts. In the long run its going to help me stay around a little bit longer. And that my friends is what I want out of life. To be part of the family and community, get out into world and give old man ALS/MND a run for his money………

Quote…Do not linger to gather flowers to keep them, but walk on, for flowers will keep themselves blooming all your way.
Rabindranath Tagore ( 1861-1941 )


  • I have no doubt you will give the old man a real run for his money and I hope you make him regret ever tangling with you! Your blog is a real source of inspiration to others, even those who don't know you, so keep it up! take care, Lynda

    By Blogger lynandjoelaw, At 12:06 AM  

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