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 count down 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.
One 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!).
So 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
Neil,
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,
B&G
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
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
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.
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
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
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
THANK YOU- FOR THAT IS YOUR LEGACY
PS.
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
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.
PS.
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
T.I.M.E
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.
T.I.M.E.
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.
Neil.
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