Hi all,
It’s been a strange one since I left you last night. After going to bed at a perfectly reasonable hour and after taking all the necessary medication, I found my mind filled with all manner of busy thoughts. There were all usual thoughts about what to write in the blog next, how we can get more publicity, what day it is, and all the ones I spare for the people I care about. However, unusually over the last few months but more usually the last few weeks, came thoughts about the loss of time, unfairness and the future, or lack of it.

Despite the above, I woke up at an equally reasonable hour, and shortly there after Louise arrived for another fun-filled and very cleansing bathtime. Louise and I spent our quiet time talking about Oscar, toddler’s attitudes and houses in Scotland. After my bath, I had visits from my son and four very good friends. Nothing unusual or a negative so far, right?

Then it must be because I have had such an enjoyable day, that I spent most of the evening with my jaw clenched fighting to keep my seething anger in check. I’m sure that more than once I snapped at people who did not warrant it and this computer, had I been able, would have been sailing across the room to smash into a million pieces against the wall. I understand it. I know other people understand it. To date, I have controlled it. I’m not entirely sure what else to do negative emotions like anger except to channel them into positive things like the awareness campaign and enjoying my friends and family. Today, I nearly didn’t control it. The trouble is with MND, if you get angry you can’t hit anything because you can’t move and you can’t shout at anyone because you can’t breathe. Similarly, when you get upset, you can’t cry properly because the water runs into your ventilator mask and when your nose runs you can’t breathe again.

Fortunately for me, I have all of the good things that I have already told you about to keep pulling me back. Today it was Louise, Oscar, mum and your comments. That means there are about 4999 people who might not have anybody or anything and they are officially the reason why I refuse to get angry so easily again. A ventilator mask full of tears and mucus it is.

Yours huffily but with love and determination,
Neil x

Every time Neil forgot his situation and found himself enjoying and appreciating a piece of life, it was closely followed by anger and disappointment that his time was coming to an end, cut short and in such a cruel and degrading manner. Every time he got to laugh with his friends or smile at his boy, he knew that we would all go on to laugh and smile again and he wouldn’t be there. I wish he knew then, how many good times we would all go on to have in his name. There was nothing I could do to stop these tears, nothing I could say, all I could do was look into his eyes as I wiped them away. These days were tough, but Neil was right, he could turn his anger into something constructive and use his voice to fight back, it was fast becoming his best defence against the disease.

I had been emailing for a couple of days trying to arrange interviews and I was able to let him know that night that a national broadsheet newspaper would be interviewing him in the next couple of days. For Neil, aside from miracles, there couldn’t have been better news. – Louise (2013)