Hello everybody,
I just thought that you may be wondering why I am so quiet.  Well, this is just a quick note to let you all know that nothing has gone awry at our end.  We are in fact filming a documentary about life in general and life with motor neurone disease in particular.  When completed we hope that it can be shown whenever and wherever possible in order to continue raising the profile of MND.

I will do my best to leave another post later on today.  I say I’ll do my best because yesterday was completely and utterly exhausting.

Much love,
Neil

‘Did it feel intrusive to have a documentary being filmed while you were going through such a difficult time?’ is often the first question people want to ask of me when they learn about I AM BREATHING.

It’s a question I find interesting because my answer, usually, is not the expected one. My memory of it may have changed a little, but even if it has, then the lasting result is the important one.  As you can probably tell from reading many of Neil’s posts, he dealt with having motor neurone disease in a very practical way, he thought about it a lot, wanted to understand it and faced it head on.  When he became emotional about it, there was always his sense of humour to rescue him and lift him back up before he fell too deep. This is quite obvious in some of his posts on The Plattitude.  But sometimes I felt that he should let himself fall deeper, let his mind go to the darker thoughts instead of burying them, or he would never give himself the chance to feel ready to go.  I think this is what the filming did for Neil.

When he was in a room with just Emma and the camera, there was nowhere he could go, nowhere to hide his emotions, and he didn’t need to. He knew that the documentary, whatever it turned out to be, would only come to fruition after his death.  He wanted to talk, to get as much out of his body as possible.  When Neil talked on the blog, he knew he would get comments of support in response.  I rarely had to wipe away tears when he had been talking to his computer, but talking to the camera was different, and I believe good for him.

For me, it wasn’t so much about having filmmakers in the house, it was about having more friends around, other people to talk to, more people for Oscar to get to know who weren’t in uniform.  Looking at my emails, I managed to catch up with a lot of friends that weekend, and write to people who had sent me lovely messages over the blog.  I had started writing to two other mothers who had contacted me through The Plattitude, both in exactly the same situation, our children only months apart.

So I think my answer to the question of how I felt having the filmmakers there, would be that it created time for both Neil and me to communicate, separately and in different ways, but important ways for both of us.  Once the camera was no longer present, the emotions it had drawn out were still there and we were able to communicate together about feelings that may never have been discussed.

I have a hard time with the word ‘intrusive’. Neil and I wanted to show the worst of the disease and we couldn’t do that without letting the camera go where it needed to be. It was there by invitation, so I don’t think there’s a place here for the word ‘intrusive’ at all. – Louise (2013)