Hi there guys and gals,
Your support since my last post has been incredible and is massively uplifting. I certainly feel that some of the shadows I have been walking in (or rather wheeling in – scratch that – sitting on my arse in) are thinning in places making them feel less ominous, or you have displaced them altogether. For that I am very grateful.
I assure you that I will keep going, for as long as I can speak I will fight for the awareness of motor neurone disease. I hope to be featuring in a couple of magazines, a couple of national newspapers if possible and any television time we can lay our hands on. The trouble is laying our hands on it. So if you are one of our readers who just so happen to know a newspaper or magazine editor, a person who is involved in programming for regional or national TV, another person who works within charities who may have media contacts we could use, anyone who is involved in large-scale advertising (I am talking taxis, buses, cinemas, Piccadilly Circus, and yes we will do billboards) – please please give us your contacts.
I may not be cool, I may not be sexy, I may not be fashionable, but I will smack you in the face and get your attention so every person who sees it will be doing their fun run in aid of the Motor Neurone Disease Association.
Okay everybody, you can all come out now. That’s my rant over. It would have been shorter if I could walk over to the telephone and ring everybody myself. I also have not forgotten the number of people who have passed on contacts and offered help – I am grateful to you all and I will try to get back to you in person where possible.
That’s it for now, much love,
Despite our best efforts and the help of the MND Association’s communications manager, we just couldn’t generate any significant interest. TV was proving something of a challenge outside of local news, GMTV had turned down any coverage as it was not an issue they were looking into at that time, the same with 'This Morning’, and radio programmes were just as disinterested. Neil found it difficult to comprehend that the time he had left was not the right moment in time for the media.
I was disappointed for Neil but I have to admit that I was also relieved. I knew we couldn't attempt a trip to London and I was glad I didn't have to argue with Neil about whether or not he could make the journey. For me, at this moment in time, I was concerned for his present not his future achievements, I had to be, I was responsible for his well-being. That night I wrote the following email to a friend which tells a very different story of the day to Neil’s expression of verve above. Neil was due to back to the hospice a couple of days later for a second period of respite. – Louise (2013)
"He’s very confused just now, one minute he’s talking about using this as his last trip to the hospice and not coming out, and the next minute he’s fighting for life again. He asked me yesterday morning what my preference would be, this being his last trip or being peg fed and blinking for the rest of his life. I told him it was his choice entirely. I think he’s considering the more prolonged route and is wondering if he has my back-up. Then he told me his mum is going to stay in the hospice with him, which I think is a great idea, but he thinks I should try to get some time up North. I can’t help thinking he’s going to try to pull a fast one, to try to protect me at the last minute. I’m not going anywhere. This thing very much feels like it’s building up to a crescendo, there’s something in the air, a very different feeling."