Hi everybody,

This just a quick note to let you know that we will be appearing on ITV’s Calendar news in Yorkshire and hopefully Tyne Tees North East Tonight programme at 6pm this evening, and possibly again during the 10 o’clock news.

Please watch out for us and tell all your friends to tune in.

For those outside the Yorkshire region you should be able to use this link to watch the interview on the ITV website: www.itvlocal.com/yorkshire/news [link not working any more - Ed.]

If you are reading this because of this broadcast and are new to The Plattitude, Louise, Oscar and I bid you welcome and thank you for supporting our cause, and as our regulars already know I am delighted to answer any questions you may have no matter how inappropriate they may seem.

Because of the current news cycle I would expect many people would like to know our views on assisted dying. Before I am deluged with questions on this subject I intend to post some of my thoughts tomorrow so watch this space!

Much love,
Neil

Oscar used to eat dinner in the living room so that I could fit both of the chairs together in the same room. His highchair wasn’t so big but Neil’s recliner where he now spent all of his time outside of the profiling bed took up quite a lot of space. Every evening the soundtrack to dinner would be the same as we watched the Bedtime Hour on the CBeebies channel, Oscar mesmerized by ‘In the Night Garden’, just the same as many other children up and down the country. My queue to jump up and run Oscar’s bath was when the little birds, the ‘Titifers’, sung their song, so it would be ready a few minutes later when the programme finished. Everyone who came to help at the house learned the cue for running Oscar’s bath, it was the end of the five minute sit-down before the evening duties started.

This evening we rushed through bath time so I didn’t miss the news. It was a very strange mix of feelings waiting for the report to come on. We were eager to see our message getting out there and spreading awareness, but we were also nervous and not really wanting to see ourselves on TV, especially under these circumstances. I’ll never forget the presenters’ introduction to our story.

"Now this will be his last Christmas but Neil Platt from Harrogate is determined to leave a legacy."

I imagine it’s what having an out-of-body experience is like, watching the TV in the same room the report was filmed, seeing your furniture and your pictures on the wall, but not really recognising yourself, and crying along with everyone else. I imagine I was feeling the same pity as the strangers watching the news as part of their evening unwind.

We couldn’t let self-pity creep into the house. It was the most destructive emotion and did the most damage, more than anger, more than disappointment and more than fear. Self-pity would bring jealousy based on the assumption that life was easier for everyone else, which just wasn’t true. We had been dealt very bad cards but we were lucky enough to be living in a country with a democracy and a national health service. We moaned about the lack of privacy but we were both horrified at the thought that others were suffering without such support. The disease doesn’t care who you are or where you live.

The comments that came in to the blog after this was broadcast were truly touching, people took the time to sit down and share personal stories and little by little, with each comment, the self-pity would feel diminished. One man with MND got in touch, and told us he had lost the use of his arms before his legs. I remember Neil saying he couldn’t imagine how difficult that would be, to be able to walk up to your front door but not be able to put the key in the door and turn the handle to open it.

I have similar out-of-body feelings now when I watch I AM BREATHING. The room may be a different one but I still have some of the same furniture and pictures, only the pity has been replaced with pride and a relief that I have Neil’s positivity there on film. I still feel the anticipation of death like every other viewer, it affects me just the same, but I know that the suffering has gone now instead of being yet to come. – Louise (2013)