I have got to be quick...

Hello, I don’t have much time.

You see, I am under the vicious guard of armed spouses and nurses who are under orders not to allow me to speak. The Christmas and New Year period has seen an unprecedented number of visitors and an extreme amount of fun being had, and that this has resulted in my being a little weary today. Absolutely knackered actually, so much so that I could hardly speak this morning. So actually the spouse and nurse combo is probably justified.

Nevertheless, I just wanted everyone of you who I did see, speak to, or receive a message from over the last week or so absolutely and unequivocally made my New Year. Not one word from my mouth said in conversation with any of you either off or on The Plattitude do I consider in any way wasted. That’s all I wanted you to know, that I love speaking to all of you, so don’t spare the conversation on my part.

Maybe next time we coordinate meetings when the wife and nurse combo are due to be out!

I will send some more thoughts tomorrow when hopefully sanctions to be lifted.

Until then and from my bed,
Much love,

I can’t remember how or when we switched roles. Neil had always been the strong one in our relationship, the decision maker and organiser, and I was happy to trust his judgement. At some point I had to take over and he had to let me. He knew that there would be a whispered confab in the kitchen between myself and the nurses so that I could fill them in with any changes, but they would always keep an eye on me too and ask about Neil’s emotions. I think this post was a nudge of acknowledgement and a hint of rebellion!

Neil made out that we were being strict with him, but in reality, there was no telling Neil how to live the little life he had left. He knew exactly what he wanted to do with it. The visitors he mentions here were summoned to his bedside, from far and wide. He knew that talking was going to exhaust him but he wanted to see people, he didn’t want to hide himself away.

We never knew if Neil had lost abilities due to progression or exhaustion, so when he talks here of being hardly able to speak that morning, we didn’t know if it was simply the morning after, or every morning from then on. I had probably lost count of how many times that question had been asked – and sadly in Neil’s case, it was nearly always the latter. We desperately wanted him to get a good rest in the hope that the next morning there would be no speech problems. Loss of speech was Neil’s line in the sand. – Louise (2013)

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commented 2013-04-17 16:58:33 +0100
Comments on Neil’s original blog post:

Andrea Kler
January 8, 2009 at 1:29 am

You take care of yourself Neil and rest.

I have started my sponsored diet and getting quite a few sponsors. Over the last few days have got about £200 so hopefully will raise quite a bit by 1st April (my target to lose at least a stone!)

I am organising a fundraising event for Saturday 9th May, with the help of others, hoping that will raise awareness as well as money.

Thinking of you all the time.

Love to you all and take care.

Love Andy xxx

January 8, 2009 at 1:30 am
Morning neil, you sound as tired and christmas weary as the rest of us, i feel utterly spent! I’m now back at work and keeping my mind off detox, diet and promised exercise, by watching clips of Alan Partridge…DAN DAN DAN! I planned to do a sponsored ‘dry for janurary’ for MND but i’m terrified of falling off the wagon and letting you down…so I have donated £50 to your just giving…..pe-empting my own failure on th 5th of the month…what a great start to the year! Rest up Jess

January 8, 2009 at 1:31 am
Hi Neil,

I have just got back into work and logged on, and I see that you’ve certainly been blog-busy. It’s taken me a while to get through it all but it has warmed my heart. I’m so glad you guys had a great Christmas and New Year. We hope to come and see you really soon.

I’m pleased to report that Jon has now bought some new cycling gear, has the new shiny, red race bike (a present from the olds) and has the triathlon training book at the ready. His training started this weekend as we discovered a brand new (and fabulous) cycle track just round the corner from me. I’m not going to lie, he wasn’t exactly Lance Armstrong but it was a good start. I believe the triathlon is in June and all the money raised will of course be going to MND.

Anyway, happy new year matey and love to all, give the little dude a big smooshy kiss from me and Jon.

See you soon

Loretta xxxxxxxx

Victoria Holdsworth
January 9, 2009 at 12:03 am
Hi Neil – me again!

Just to let you know I have now organised a battle of the bands spanning over 3 months in The Bay Horse – it starts 20th feb

We shall cover it everywhere we can and have got some good backing from the MND association – looking to raise 1k min

Wishing you well and love to Oscar and Louise and family

V x
@breathingfilm tweeted this page. 2013-04-16 21:32:06 +0100
Neil has to be quick before the "vicious guard" come after him... #Plattitude #MND #ALS http://www.iambreathingfilm.com/i_have_got_to_be_quick?recruiter_id=2
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