Pride, at what cost..



What is the major thing that we all take for granted. LIFE is what it is. It is like a children’s playground with swings and slides, turntables and ropes. All the ups and downs of playing on swings etc is what made life go round for us.
We have all taken a tumble at some stage from such equipment and brushed it off as no consequence, but, like a turntable, what goes round comes round for some of us.
And so it is with ALS/MND. There are those of us who are able to brush it to one side and get on with life as best we can but when the slide comes down too fast and hard then that is where life becomes so much harder to bear and our pride takes a fall.
We cope with the everyday tasks of living but at a price. Pride is the thing that most people find difficult when it affects them personally. And with pride there is also dignity. If we can handle these two aspects of life then we are coping alright.
The other thing to remember is that with pride there is also age. Pride and age go hand in hand and it is a hard ask when you have to look to those around you, people you have known all your life, and say to them, “can you please cut my meat” or “ I need to go to the toilet” or the 1001 other things you have to do, to maintain and keep in place your pride, and know that age is no barrier in this game of life.
With ALS/MND there is no barrier. It can strike at any time or any place. Age and sex are now of no consequence ( people are now being diagnosed a lot younger) and it makes no difference to your community standing or place in society.
We are a diverse race of people and every day it seems like there is a new illness to try and combat and we do the best we can with what we have. But what we have is not enough in some cases and this applies especially to those with ALS/MND…
As far as I am concerned I am taking it in my stride ( is that putting one foot in front of the other he says with much laughter, oh how I wish I could.) and though the daily task of living is getting ever so slightly more difficult I am not letting the negative aspects of my condition get me down. I cannot stress enough that anyone with ALS/MND try, as hard as they can, to hold onto life and pride with both hands ( and I know that this will be difficult with a lot of people ) and let the world know that you are there through being positive and enjoying life with family and friends.
Jan and I are now looking at ways of bringing attention to Motor Neurone Disease. Off making aware that there are a growing number of people in New Zealand being diagnosed almost daily with this disease and of finding ways to help or get help where ever we can. ……..

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