Time waits for no man...

Good evening everyone,
I may or may not have mentioned before how the days can run into one another when one’s daily routine is very similar. Often times, I have no inkling of what day it is from one to the next. The net result is that time passes very quickly, so much so that sometimes the weeks slide into months without me knowing. Frequently, the measure of time is a countdown of times I am transported to bed until a certain event, such as the visit of friends. Alternatively it is a count up from a white rabbit day.

Clock_green.jpgOne of the main reasons for this is that we have never had a clock in any room of the house and also that I have not worn a watch since being unable to turn my wrist to look at it. Louise remedied this over the weekend by buying me a clock which projects the time onto the ceiling above my bed! As a man who has always been punctual, a real stickler for the minute hand on my watch, this is a delight. It enables me to know exactly how long one of Louise’s 10 minutes really is (I am not entirely sure she thought things through!).

Clock_blue.jpgSo now I can lay in bed and know exactly where I am in the day. Time passes in a scrolling serene green, deep ocean blue, and my personal favourite, emergency room red! When the display is red, I imagine it is my own personal countdown; it really does take me back to those heady days at MI6!

My reacquaintance with the when of things has confirmed how right I was to have an awareness of, and value, my time. 


My wife would call me obsessive or anal-retentive when it came to our being at an agreed place and our being on time; it was often the source of many dark looks and barbed comments, one of the only things we have argued about. But to me, it was the simply the polite and proper way to be. Now, it is even more important to me since the revelation that my finite time on earth is shorter than I had ever imagined it to be.

You could all do me a favour, don’t let yours slip by unnoticed.

All my love,
Neil x

I wish I had bought him the clock before, like so many things I wish I had found to improve life for him earlier. It was such a simple thing to fix, I wish there had been more ideas like this. The day to day of things had taken over and my usually resourceful mind had been lacking in inspiration.

Realising how much he appreciated the clock, I looked on the internet for something else to project onto the ceiling. Friends had suggested a constellation projector, so I sat at the computer that night and ordered the best one I could find with my credit card. It was over £100 but it didn’t seem so expensive if it could give Neil something else to look at and help him relax to a more peaceful sleep.

When it arrived, I set it up as a surprise for him in his room before he went to bed, it was great to find something that changed his view, all he had was the living room, the bedroom and the trip down the hall between the two. The hoist restricted his world, he couldn’t stand at the door of Oscar’s room and catch a glimpse of him peacefully asleep, one of the most heartwarming moments for a parent and one that Neil just couldn’t have. I still think of this every night when I go to Oscar’s room to check he’s asleep and switch out his night light. Back then, Neil would ask me to give Oscar a kiss from him too and it’s something I still do for him to this day.


I had kept the constellation projector for Oscar’s room after Neil died, but it took me a long time to take it out of the box. When I finally took it out and set it up, the whirring sound, together with the smell of warmed plastic, both of which were subtle, brought back too much of Neil’s final few nights. Oscar would have loved it but I couldn’t go through these emotions when I was putting him to bed on my own.

Neil’s own time may have run out now but it has certainly not slipped by unnoticed, thanks to The Plattitude and everyone who has been involved in I AM BREATHING and now a whole new army of recruits who have agreed to screen the film. – Louise (2013)

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commented 2013-12-03 08:02:17 +0000
I am moved by your words. My old schoolfriend, Liz Pick, is where Neil was then. The first thing I did when I found her was to buy a pot plant which didn need much care and a bird feeder so she could watch a changing picture of pretty things at her window.
I am pleased to say her family have now bought a larger bird feeding station for her.
At 60 I have so many other sadnesses in my life it is hard to find time for another after 44 years of no contact with Liz. Still I do reach out whenever I can to be a change of face for her. I found out about her plight when another church organ playing schoolfriend on facebook said that Liz had been to see her to chose the hymns for her funeral.xx Jenni
@breathingfilm tweeted this page. 2013-06-14 16:22:47 +0100
Today's #Plattitude: 'You could all do me a favour, don’t let your time slip by unnoticed.' #MND #ALS http://www.iambreathingfilm.com/time_waits_for_no_man?recruiter_id=2
commented 2013-06-14 14:48:13 +0100
These were the comments on Neil’s original post:

February 17, 2009 at 9:22 pm

Your sentiment expressed in that last sentence is one of the things that has been on my own mind the most since this happened to you.

I’m well known for being sometimes downright bone idle (a real danger when working at home and surrounded by restless dogs and cats who dictate their own feeding schedules) and sometimes tardy (Half-Job Vickery is really me) but I’ve been looking at my own life somewhat differently lately, seeing the self inflicted crap, and making changes, bit by bit.

We all start out with the best of intentions about what we want to do and while things can legitimately get in the way and distract us, it’s all too easy to forget which direction it was you were headed out on in the first place. I got my compass out and found it again, mate. The reactions of you and those around you to this disease make me see that life is worth living, no matter the circumstamces; every bit of it.

I fully intend to do you that favour.

All our love,


February 17, 2009 at 9:53 pm
Hiya Neil, how right you are time does wait for no man, and how precious is the time that goes by. You will know even more than ever how time works, slow, fast, painful, happy but we should all relish the time we have, every second, every last minute. This i suppose is what my mum did in her later days she enjoyed every last minute no matter how painful, tired or unpleasent and at times fustrating it was for her having mnd, time is all relative to the person and place they are in.
We need to enjoy the tick and dance with every tick.
Night god bless all
Lou Mc

February 17, 2009 at 9:57 pm
Hi Neil – sorry couldn’t get to see you on Monday – will try again this Monday

Just to let you know the battle of the bands charity event starts on friday at the bay horse so spread the word – already had some great responses and money raised so hopefully can do even more over the next 2 months.

All my love

V x

February 17, 2009 at 10:13 pm
Lying here in front of Master Chef; Tesco’s two for one red on the go; left leg raised in readiness for a post egg-n-chips fart; I turn to today’s Platt Lesson and – yes – carpe diem from now on I think.

… cracks knuckles, pushes away cheese cake … all rise.

Andrea Kler
February 17, 2009 at 10:33 pm
Hi Neil
Thinking about you all, all the time as usual.

As you are so good with words and composing letters will you help your mum to compose a letter for us to post out please (dont know if she has already asked you).

My love to you all, see you soon.

Love Andy and Family xxxxx

February 18, 2009 at 9:27 am
Brian has written my post for me, and far more eliqantly than I ever could. Well said sir. I’ll just add the clock sounds awesome, right up my ‘gadget obsessed street’. Can I get one shaped like R2D2?!?:)

Lots luv x

February 18, 2009 at 10:38 am
Hi Neil

Like yourself, I also have oodles of time (now I’m retired) and I was thinking about this strange thing we call time

I was also thinking maybe you should have been either a philosopher or writer??
Your pen gets sharper every day and your prose gets ever nearer the truth and meaning of life for us all

The legacy you will leave behind is not just an awareness of MND, not just the knowledge of how the human spirit can triumph over the most appalling tragedy, not even how much real friends and family can mean.

The legacy you leave is an awareness!

Like older people who are aware of their limited lifespan, like thousands of people who have suffered near misses, life threatening diseases, or accidents – you have made us aware that ‘time’ really is important- that every day is a blessing-that chances are to be taken-that one must really live life to the full and enjoy every single moment given us in this strange thing we call life

By the way I also loose track of time! not sure if its the effects of a lifetime of alcohol abuse or the creeping senility syndrome!!
-Seriously its great to see you writing so often now-Keep it up mate!

Love Bryce & Jane xx

Cash & Scoob
February 18, 2009 at 4:03 pm
Hey up bud,

Top post mate, I’m almost looking up at the ceiling with you. Just to let you and everyone know my life changed with a certain milestone, it’s in a diary. It reads…

Thurs 7 February 2008 – MY LIFE HAS CHANGED

This was the day you rang me and told me you had been diagnosed with MND. After being in bits for an hour we came straight over and had a beer with you, Louise and your Mum. Time stopped that evening.

Before that day I thought of things like “one day I will try a martial art, do a triathlon, have kids”. Since then I am now training for my green belt in Jujitsu, have signed up for two triathlons, and the other, it’s work-in-progress.

You are absolutely right.

When you used to came round to ours on your own you where always five minutes early. If you where with Louise you where always 45 minutes late (sorry Mrs P), and with Oscar add another 15 minutes.

Keep up the good writing, love you mate.
Cash xxx

February 18, 2009 at 5:57 pm

Theoretical, Imaginary, Moments of Existence (or T.I.M.E) for short.

What time is it, ?
Time is money,
Time on your hands,
The sands of time,
British summer time,
Time of your life,
Play time,
Bed time,
Time travel,

Time to say goodbye.

The, Infinite, manifestations, (of our ) Experiences.

This, Is, My, Epitaph.


I value the time, “we shared”,
I value the time your wife and friends give to you.
In turn you share your extremely valuable time with us.
A gift we will always treasure.

This, Is, Me, Eternally.

Petena Carroll nee Stewart
February 18, 2009 at 11:00 pm
Hi to you neil and family, i’m actually going to refer to a phrase you said in an earlier entry…do me a favour…. i think this phrase will actually have resenounce even more than my own dads passing of cancer….and i knew that was going to happen. i have kept in touch with your so unselfish excerps (even when i’ve not known what they refer to!) believe me when i say thankyou and i will do that favour!!! keep wearing the tee shirt! Petena x
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