Having a positive mindset has to be a good thing for living with this disease though, for dealing with anything in life. MND is cruel, but everyone's journey with it is different. In the end though, the person with it will die from it....sooner or later...fact. Being positive helps you to make the most of each day, to feel you are sticking two fingers up to this damn disease, it keeps the spirit alive.
There are indeed people I would call heroes in our MND world, people who literally go the extra mile, who constantly fight for awareness or raise money. Those who are facing this disease head on with both fists up, putting themselves out there. The fighters, the campaigners, those heroes who will let themselves be heard. (Everyone though with MND is a hero in my eyes, even the quiet ones.)
People often say we are brave, but neither Chris or I are sure we get that. We don't do anything special, we don't spend hours campaigning or fundraising, we just get on with life. There is nothing brave about that. OK, Chris has been dealt a cruel blow with having MND, but just living each day as best we can isn't brave. What else do we do? roll over and die? Give up? Wanting to live is not brave it is a need, an instinct, a desire. Neither is it wrong if someone feels the opposite. To have the courage as an indiividual to want to end their own suffering with a disease like MND, takes a different kind of bravery altogether.
Yes I write this blog, there is nothing brave about that, I am probably never going to meet the majority of people who read it and when I do I usually want to crawl into a hole out of embaressment. I am not brave at all.
Is Chris a hero though? Well he doesn't give in, he still fights in his quiet way, he still laughs and smiles and makes the most of each day, even if to him it is just doing simple stuff. He has no desire to travel the world or go to far flung places. Being able to watch the tele when he wants or read a book when he wants, these little pleasures were always denied to him when he was a busy farmer. Plus he gets to spend more time with me and his family. Don't get me wrong, he'd go back to farming in a heartbeat if he could, but he just accepts the life he has now and makes the best of it. Chris is never going to be putting himself out there, not in a big way, that's just not him, but he is my husband, so of course he is my hero.
We do need those who are prepared to shout loud though, those who have it in them to fight publicly, to put themselves out there, to campaign, to raise money. They are the life blood of fundraising whether they have the disease or have been touched by it.
I still don't understand why saying someone is a hero is patronising, of course most of those 'heroes' would deny that they are. Since being thrust into this MND world, following these brave people has given us hope and strength and yes, lots of laughter, never negativity, we are grateful and glad to know them. This would never have been so were it not for MND, but now we do and we just want to say thanks to all of them.
So yes, I will call all those with MND heroes, the ones who shout loud and the quiet ones, they always will be to me.
