Mad Englishmen and Dogs...

Or is that mad dogs and Englishmen? Hello all,

Sometimes, I’m not at all sure which way around it is. This cheeky little play on words represents how, from time to time, it is so easy to get things mixed up, back to front and topsy-turvy; this is the case in everyone’s everyday life, but even more so in the emotional boiling pot created by our current situation. As Louise mentioned in an earlier post, intentions get distorted, nerves become frayed, patience evaporates and defences are raised. Such has been the case recently and the result is extreme disappointment.

For me, it is not ultimately the person or people involved who are the cause of that disappointment. It is quite simply that I consider such events as being yet another casualty of circumstance. Just as the physical deterioration I have suffered is a result of motor neurone disease, so is the emotional deterioration of everyone touched by it. It pains me to think that the price being demanded by the disease is so high that not only does it reduce me to a talking head, but it eats away at the strong ties of family and friendship which ordinarily would withstand the most determined of attacks.

I would say to anyone so affected, that patience and compromise are the only effective weapons with which to defend against the siege of MND. A little extra thought will save an enormous amount of heartache. That said, there’s no reason why this shouldn’t be the case regardless of circumstance.

Don’t fall victim to it, it’s bad enough as it is.

All my love to my friends and family (yes all of you!),
Neil x

Neil_mouth2_profile.jpg

As Neil started to struggle more each day, the tensions in the house rose, mainly because of the unfairness of it all. Nobody wanted him to die but nobody found it easy to watch him struggle either. There is no remission to hope for with MND. We all had to deal with our emotions within the confines of the house, there was very little private space for anyone.

Neil told me he was concerned that the heightened emotions caused by his illness would remain present after his death. He didn’t want anyone to carry any bitterness toward each other rather than the disease. This post was his final say on the events of the day. He appreciated having a place to put his thoughts, somewhere he knew they would last and no-one could argue with them.

He needn’t have worried, we have all been glad to lay anger and blame upon the disease, and there are precious few people in the world who have been touched by it enough to understand its horror. As awful as that is, when you do meet someone that has been touched by it you have an unspoken bond. You can speak about it, but it just takes one look to know they’ve been there and understand what you’ve seen.

I had the privilege of meeting the actor Joss Ackland, whose wife died of MND. He put together a beautiful book called ‘My Better Half and Me’, full of wonderful, treasured memories of a fascinating life together, including some pieces from his wife Rosemary’s diaries. He signed a copy for me which simply said ‘Dear Louise, you’ve been there, love Joss’. – Louise (2013)

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Showing 1 reaction


commented 2013-06-15 20:51:48 +0100
Comments on Neil’s original post:

Andrea Kler
February 18, 2009 at 9:16 pm
Hi Neil

I for one think that you handle your illness so well. Many people in your position would not be able to cope half as well as you do.

You are one of the bravest people I know and I am so proud of you, and so is everybody else.

Will log in again tomorrow.

Take care

Love Andy xx

ann
February 18, 2009 at 9:19 pm
Neil

Your words render me speechless…..

You got a publishing deal for this blog yet?

It really is difficult to put into words just how impressed I am by the continuing humour, philosphy and honesty in your writing.

The comments from all your friends are a testiment to the feelings we all have for you.

You, Louise, Oscar, Lynne and Matt are never far from our thoughts.

Love Ann

Austin
February 19, 2009 at 9:00 am
Hello Neil,

I did a treble at the bookies at the start of the football season. Man U for the Premiership, Birmingham for the Championship and Leeds for division 1.

While Man U and Birmingham are looking good, it appears Leeds are performing quite poorly. That betting slip is highly likely to be used for toilet paper! Maybe the Platt clan can exert some pressure on the local football team by way of a boot up the arse!

Cheltenham is coming up and if I win at the bookies I will hand it to Paul by way of a donation to MND. The Irish always do well at Cheltenham.

Come on the nags!

Austin

Tim
February 19, 2009 at 9:25 am
Aye well said mate, patience and compromise are not the easiest beasts to master but you are correct in saying they are probably the most important ones when it comes to loved ones. Yet again you put into words very easily things that have taken me years to get my head around:p

Take it easy confucious:)

Lu
February 19, 2009 at 10:51 am
Hiya Neil as above you are trully remarkable. Yes MND is a disease that affects every inch of your and the families existance. It is so powerful amd distructive, but through it you have found how to cope and manage it an amazing way. For us we found we got so frustrated with the services, society , and the lack of understanding, amisits of all this was a wonderful mother who just wanted to live with out the chaotic live style MND brings. The darn illness comes so quick and nobody is prepared. We have got to, got to find a cure and fast. I couldn’t bear another experience and i am sure your family has had more than its fair share.
Thinking of you always
Ye get this wonderful blog published
Love Lu Mc

Sara
February 19, 2009 at 11:24 am
Neil & Louise

With the best intentions – everyone has to let go from time to time. It is normal human nature, especially during difficult times. I cannot even imagine how it must feel for you and Louise but, what I do know, is that emotions must be running very high which will, inevitably, lead to outbursts.

Having witnessed how you both deal with this situation, fills me with awe and admiration. Lots of my friends tell me that they read the blog regularly and are amazed with how well you are coping with what life has thrown at you.

We are very proud of you both.

Love, as always,
Sara x x

Sas
February 19, 2009 at 3:52 pm
Funny the last post should mention it – I’ve also been thinking over the last few days there’s a publishing deal to be had here… seriously – selected chunks of this blog in print would sell to a big readership I reckon (and not just to those connected in some way to MND)… more potential for raising awareness and fundraising?

Jane
February 19, 2009 at 7:43 pm
Your writings touch me somewhere deep inside and bring back a life that I remember only too well and that only other people who have also lived through this terrible disease can truly appreciate.

The dark days do not happen every day though and there will be another person or a different happening that will restore your faith in human nature. It is obvious from your blog (just as it was when we were doing ours last year), that you have many people thinking of you and upholding you in their thoughts.

Let tomorrow be a day of rainbows for you xx
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