I’ll keep going, but it’s getting harder

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,
Neil xx

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."

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Showing 2 reactions

commented 2013-04-24 17:57:16 +0100
These were the comments on Neil’s original post:

Kathy Turvey
January 10, 2009 at 2:06 am
Hi Neil, Louise and Oscar,
I tried to leave a reply the other day but it got lost in the ether. I heard from Sue that she had been up to visit you. If the distance wasn’t so far I would also make the trip. I am now living in Sydney, Australia. So at least your blog as reached the other side of the world. Not sure what I can do practically but I am trying to search my little brain for any contacts I may have.
I do have some great memories of you from the Bank House and of the times you spent at my place in particular the night we decorated my lounge room walls with our thoughts. Some of them deeply profound some of them deeply not! I still have the photo’s of the walls as I didn’t really want to conform and cover them up but sadly I did.
I am sorry that I have not met Louise or Oscar yet but they both sound amazing. You too of course it goes without saying. But just in case I will say it anyway you are an awesome person with a beautiful soul, you’re witty charming and intelligent and have a fantastic sense of humour. Which I am glad to see is still shining through. This all sounds like insincere flattery but I can assure is the truth of my sense of you.
I am so pleased for you that you have so many good people surrounding you as you truly deserve nothing but the best. It sounds you have found that especially in Louise and Oscar. Children are incredible and I am so glad that you have had the chance to walk some of the path with Oscar as I am sure he will be so proud of you.
Have a good rest over the next couple of weeks.
Love you
Kathy (aka Greenie) xxx

Anne Wollenberg
January 10, 2009 at 2:34 am
Hi Neil,

Jon Spira pointed me to this blog. I’m a journalist who writes for various newspapers (you can see my website at http://www.annewollenberg.co.uk) and I’d like to help you get your story out there.

Please drop me a line on [email protected] as soon as you get this with more info – including details of any media coverage you’ve had before as editors like to know.

Best wishes
Anne Wollenberg

Heather MacDonald
January 10, 2009 at 3:13 am
Hey there Neil,

It’s Heather here, from Wakefield – the other Wakefield!

Sue has been in touch and told me that she’s seen you recently and she let me know that you have MND. It’s been over ten years since we were hanging out on the deck drinking beer and throwing scraps to the raccoons and singing songs and carving walking sticks and looking over your portfolio… all this in the ‘other’ Wakefield, an ocean away.

But obviously, those memories are clear and vibrant and they fill my heart and being with smiles and laughter and a damn good feeling. Your infectious smile and good humour and UK-cool edge have affected a lot of people on this side of the pond, too.

Our lives haven’t intersected for a long while Neil, but I’m so grateful for those times when they have. And now, we’re both married, you with your beautiful wife and companion Louise, and your gorgeous child Oscar. Precious. No words to describe how lucky I know you know you are.

I have a great guy, Paul, and we have three amazing kids. It’s awesome, truly.

As you well know, there are people here whose lives you have touched and I will let them know about you and your family. I’ll tell them about MND and we will collectively find ways to spread the word here about the disease. I’ll read through your blog and the site and find out more so I can share all of this and inform others.

It’s truly remarkable what you’re doing, Neil. You’re an inspiration to us all. I think now of when you took off to explore Toronto and beyond – determined to discover, shake things up a bit, live it. And then you came back and described it all, so vividly, so well, so honestly. It’s kinda like what you’re doing now and I admire and respect your passion, your frankness, your honesty.

Keep that spirit, Neil. Know that you’re very well loved and that we’ll spread the word.

Much love & big hugs, Heather

Alex Somerville
January 10, 2009 at 3:03 pm
Dear Neil
You have been in our thoughts very much recently and we have been reading your Blog on a daily basis.
I hope you don’t mind but I have been in touch with Michael Wood, ECA Secretary and he was very concerned to hear of your condition. He is going to ask SRC/Archie to co-ordinate fund raising in support of MND. He also indicated that one of the Governors of ECA has a son with MND and that he has donated £1m to the University for vital research in this area. He said that whatever they can raise could also go towards that effort.
I hope on reading this it will help to lift your spirits just a little.
With very kind regards to you and your family
Alex Somerville.

Andrew Tibbs
January 13, 2009 at 4:05 pm

Can you forward me your contact email. I’ve got a few press emails I want to forward on to you.

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