I was never quite sure about sharing my personal thoughts, everytime I write I do have a few doubts about whether it`s the right thing to do, but anyway, here`s why.
1) Firstly I write it as a personal diary, as I want to remember every second of what this disease is doing and is going to do to my husband. Not for any morbid kind of reason, but because I don`t want to forget, ever. If I forget I might give up the fight to keep raising awareness or to fund raise and I never want that to happen. Plus, I have the memory of a goldfish!
2) I want it to be a factual, documented log of the progress of Chris`s experience with MND.
3) I want it to be an easier way to keep friends and family informed. I don`t mind telling people about what is happening to Chris, but sometimes isn`t always easy to talk about it, so it`s a way of keeping them up to date without them feeling awkward about asking us how Chris is.
4) It is cathartic for me to write about it. I `m not trying to be witty or brave .I am just expressing my thoughts and writing in the moment.
5) I have been told that it has been helpful to a few people who have felt alone with this disease and it helps them to know someone else understands what they are going through. As I`ve said before, I never thought anyone one would read it barring family and close friends. Because it is a relatively rare disease, having MND can seem very lonely to the MND warrior and their family. It must have been particularly lonely before the days of social media and if sharing our experience helps just one person who reads it , then I guess sharing my thoughts is worth it.
6) Mostly I write because I am compelled to, because I want to raise awareness in a way that I feel I can. I can`t run a marathon or jump from a plane, I trip over my feet and trip over my tongue in equal measure in social situations, but for some reason I am able to express all our experiences in the written word. People have said it is brave. It`s not brave at all. There is nothing brave, for me anyway, in typing words on a screen. Those living life with MND, knowing the inevitability of it all, those are the brave ones.
