It’s been a really intense weekend as we have been filming for about six hours on each day, almost constantly. I think that this may have been a big ask before I became this vocally challenged, okay maybe not but I might have been a bit tired. It takes quite a lot out of you, too, on an emotional level. We are trying to let other people know what it’s like to have motor neurone disease, not just the physical challenges which become more and more difficult as time passes, but also the impact on family and friends who all become instant carers. We’ve also being attempting to describe the more subtle emotional and physical sensations I am now feeling.
The roller-coaster ride of emotions that was this weekend has left me somewhat shell-shocked. When I was asked what I miss most about each pair of limbs, beyond them actually moving, it took me a few minutes to decide what I'd like doing with them. Things like holding Oscar, holding hands with Louise, playing guitar, holding a book, drawing, fixing things – and these were just a few for my hands. For my legs, beyond the usual walking, I used to go running, riding a motorcycle, driving and elephant-riding (okay I know it’s not an everyday thing but it is a thing nevertheless!). I felt shell-shocked because I had never felt the loss of my physical abilities before then. I think I have simply accepted my fate and adapted to each loss as it appeared. I still think that acceptance and practicality were the right route for me, but I don’t think I was ready to confront them again in such a raw way.
Anyway, I feel it was a very worthwhile exercise and when finished will be a very powerful way of introducing people to the reality of motor neurone disease. I hope that using the documentary will reach a far greater number of people.
The whole bloody affair has left me completely knackered though, and so I shall now retire for the remainder of the afternoon with Stephen and his own masterpiece Under Siege!
Thank you so much for your comments, they consistently keep me out of the dark places.
The talking had really taken a lot out of Neil, as you can tell, not just physically but emotionally. It’s good to read him opening up and admitting ‘shell shock’ from his thoughts. He had been open to the camera, it had let him go to a dark place, and he had The Plattitude to help him recover through the support of the readers.
Neil could still feel his limbs, and I think this is the reason why he had never thought about missing them before. He hadn’t grieved for the loss of his limbs, he had just become frustrated at their lack of ability. I think he was feeling ‘shell-shocked’ at confronting the fact that his limbs were gone forever and so too were all the things he had been able to do with them in the past.
Strange then, that his perfect relaxation getaway choice was to watch someone else flailing their limbs about with precision and strength!
Besides Chuck Norris and Stephen Segal, Neil had also likened himself to Tigger from Winnie the Pooh. Before motor neurone disease, Neil had never lost that childlike ability to jump up and down when he was excited about something, a trait I found quite annoying at the time (especially in shops) but I now look back at it with great affection. When I think about how Neil would feel if he knew how successful I AM BREATHING had become so far, that’s the image I get, him jumping up and down like Tigger with a huge grin on his face. It was indeed a very worthwhile exercise. – Louise (2013)