When we first found out that Chris had this disease we were devastated, even though we had prepared ourselves for the news, nothing could ease the pain of hearing those words, `I`m sorry , you have Motor neurone Disease`, Chris and I held hands and cried. We cried for days.
We are still devastated, but after a while, for me any way, I just got so bloody angry, angry with life, angry with MND, angry at the unfairness of it all. Why Chris ? What had he done to deserve this bloody awful disease, nothing of course. It is just an evil, random thing, that apart from the few hereditary cases, just plays Russian roulette with our lives. It makes you feel helpless, what can we do? There`s no cure, no treatment baring one drug that gives you three extra months, wow we tried not to get too excited about that one. It is going to kill Chris`s motor neurones one by one until he will no longer be able to walk, talk, eat or speak, it is the cruelest of all diseases.
But do you know what? It doesn`t kill our spirit or our love, it can`t touch that and it has fired so much fight in the both of us. Chris fights to work, to keep going as long as he can, he doesn`t want to die, he wants to bloody live and I fight to do the only thing I can, to raise awareness and funds, even if it is in a small way.
The recent craze in the US for people to do this Ice bucket challenge is sweeping the world. In the US it has raised over a million dollars, if not more by now. This rare, underfunded disease, is finally being recognised. Call it MND, call it ALS, call it Lou Gehrig's disease, they are all the same disease and those with it are suddenly being given some hope, as every penny raised is a penny to towards research or a penny to help someone at grass roots level. So if you read this, share it, share it every where and help to spread awareness and apologies if this causes offence to some, but I am angry today and today MND can bloody f**k off. It might win the battle, but it`s got a fight on it`s hands first and we have our fists well and truly up !!
