Do you know what I miss most?


Hi everybody,
It’s not my arms or legs, my strength or mobility, my independence or going outside, my career or playing guitar, the pub or a dinner party.  Shall I give you a clue?  It is able to console far better than a sympathetic ear.  It is able to express love better than roses.  It is able to show friendship better than a wristband.  Any ideas yet?  As a greeting, it is superior to a handshake and is the fondest way to say farewell.  That’s right.  So simple.  A hug.  I miss the ability to give (and receive to a certain extent) a hug.  I think I used to be good at it too. 


All I can do now is raise my eyebrow or give a reassuring wink, believe me that this does not have the same effect on the intended recipient and nor the same feeling of making a difference without saying anything to me. When people don’t want to talk about their problem or worry, a hug provides reassurance and security that you’ll be there when they do want to. As it is, all I can do is stare sympathetically or rattle on like a half-baked psychiatrist. It’s funny isn’t it? I would never have realised it either but there you go.

In other news, my auntie Margaret has been diagnosed as having had two minor strokes. Fortunately, and surely due in part to your good wishes, the prognosis is good. She is to have physiotherapy, speech therapy and medication which should see her make a full recovery.

I can’t think of anything else to tell you at the moment, save to say that we are all well (as well as can be expected that is) but are all very tired. We are aiming for a reasonably early night so that we can enjoy the weekend to its fullest.
Speak to you in a while. All my love,
Neil x

I don’t want to add to Neil’s words here, I want to give you photos to back them up. I have written before about Neil’s tendency to jump up and down like an excited child; it went hand in hand with his ability to force a big hug upon you.  So yes, he was good at giving hugs, and I think if you didn’t know him, these photos will help you get to know a big-hearted piece of him.

And these are just the boys! – Louise (2013)


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Showing 3 reactions

commented 2013-06-02 20:28:35 +0100
Everybody that reads this should go over to the nearest person and give them a hug in memory of Neil x
@breathingfilm tweeted this page. 2013-06-02 19:24:22 +0100
Great photo collection added to a moving #Plattitude post: Neil misses the ability to hug. #MND #ALS
commented 2013-06-02 19:18:35 +0100
Comments on Neil’s original blog post:

February 6, 2009 at 10:00 pm
Oh Neil, your note tonight is so distressing and so true. A hug can say a thousand words without saying anything thing!! MND is A most cruel disease i believe, sharing your life with us raises awareness and the need to beat this darn disease that coNsumes so many lovely and loved people. I had never heard of it until i saw John Bell picutred in the underground. I came home and told my Mum all about it and being a nursing sister said my dear it is dreadful. Low and behold Mum was then struck by it .
I send a big big hug down the line to go all. Hope you have a great weekend my love.So glad Aunty Margaret is doing ok, you are a strong resourseful family
Lou mC XXX

February 7, 2009 at 2:27 am
You were good at hugs. You still are, let it be said, and we still need and appreciate them. Fair enough it takes a bit of manoevering and you do need your ventilator to survive one of mine, those of us of the well endowed variety pose a bit of a hazard to you these days.
Do sleep well and have a good weekend.
Thinking of you all always, hope to be over soon,
lots of love

February 7, 2009 at 9:23 am
Hello Neil,
Thank you for your latest post – again so eloquently describing for others the day to day consequences of coping with MND.
I’m off to Scotland for a week’s holiday – back to the motherland! I’m swapping the sunshine and temperatures of a very pleasant 22C here in Tunisia for snow! I won’t be able to log on while I’m away so I look forward to ‘tuning in’ when I come back. I think of you, Louise & Oscar every day.
One thing which has struck me is that while waking up and facing MND each day must be incredibly difficult, you are making the most of every moment. Not everyone does that and sadly not everyone has that opportunity. My sister lost her fiance in February 2007. He was fit as a fiddle, didn’t smoke or drink, was into healthy eating and exercise and he died in his sleep of a massive heart attack – he was only in his early 40s. A few months later my sister was then killed in a car accident in July 2007, she was only 36.
Thank you for making the most of every moment, you are an inspiration.
Sending you a hundred virtual hugs.
Love Lorna xxx

February 7, 2009 at 9:29 pm
Well hers a metaphoric hug form me,
.. in a man to man kind of
“I respect you but I don’t love you”
kind of like a rugby player hug, not a gay rugby player…. oh what the hell I love you..
and don’t forget when you are as eloquent and creative with words as you are Neil,
Love you all. Neil.
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