I have no idea where to look

Hello there everyone,
I’m getting a little more settled here at St Michael’s. I spent most of the day yesterday in a complete haze and yesterday evening sat with my mum watching, wait for it, Coronation Street followed by Coyote Ugly! Fortunately Guinness and Port and lemon seemed to take the edge off it.

I apologise for the shortness yesterdays post, this was due to a number of factors. Firstly, I was thoroughly done in. Secondly, my mum has broken a wrist and has a cast on therefore it took about three half hours for her to push my chair across the carpet because my network cable wasn’t long enough! Thirdly, between the aforementioned fantastic broadcasts I needed the toilet – I hear you saying ‘No Neil, No!’ but I say if we are sharing then we are sharing. Basically, it involves three or four members of staff helping to remove my trousers and fit the sling for the hoist. The straps are then looped and fit it to the hoist following which I am lifted into the air so that my backside can clear the bed, upon which a plastic commode pan is placed for my use. The same applies in reverse except for the fact that I have to be lowered on to the bed in order to have my trousers lifted which means being unattached and reattached to the sling and hoist. This process takes about a minimum of 20 to 30 minutes with the professional staff at the hospice, so again you can appreciate the strength it takes Louise, my mum and all our other nonprofessional friends who have, pardon the pun, mucked in. All are to be applauded.

Now about the title subject. I am currently lying in my bed in the same room I had before, not at all what springs to mind when one thinks of an institution such as this, with its timber-topped stone fire surround, the hexagonal coffered ceiling, ornate cornice and stone mullioned windows providing a view over trees, fields and one of the beautiful viaducts carrying the Leeds-York railway. This is one of the ways to look. This is longing and the freedom I do not have.

Another way to look is at the full-size hospital bed I lay in, the health and safety signs on the door, the hoist standing in the corner of the room willing me to want to move, the movement of professional staff as they answer the call of nearby alarms and finally the constant breathe and sigh of the ventilator beside me, like a metronome clicking away life before my eyes. This is another way to look. This is inevitability.

Another way to look is at the grand fireplace with its tiled slips, stone surround and heavy timber mantelpiece incorporating egg-and-dart detailing, because atop it stand a number of photographs. One is of Louise and I sitting somewhere doing something looking happy. One is of Louise and I cutting our wedding cake. One is of Louise holding Oscar under her chin after a feed when he was very little. One is of Oscar looking up from the mountain of presents he got for his first birthday. This is love and pride and what I will miss.

Every single one of them made me cry. Which way would you look?
Neil x

I remember reading this at home and feeling that Neil was very far away. Although the hospice was only a couple of miles up the road, it was too far to wipe the tears away and hold his hand. – Louise (2013)

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@breathingfilm tweeted this page. 2013-04-29 15:51:40 +0100
Today's #Plattitude: on using the toilet and looking in three directions. #MND #ALS http://www.iambreathingfilm.com/i_have_no_idea_where_to_look?recruiter_id=2
commented 2013-04-29 15:36:01 +0100
These were the original comments on Neil’s post:

Andrea Kler
January 15, 2009 at 11:40 pm
Hi Neil

You will already know this but just wanted to say that you are in our thoughts all the time.

We keep thinking of ways that we can raise awareness and funds for MND.

I will keep you informed as things progress.

Hugs and kisses to you all.

Take care.

Love Andy and Family xxxxx

January 16, 2009 at 12:19 am
Hi Neil,
I would look towards the photos and the love and pride you have have there, failing that get the nurses to do a fan dance for you around the hoist to distract from the inevitable. We can do one for you when you get home though it may put you off. x

Danny M ‘n mum Sue
January 16, 2009 at 5:25 am
Hi Neil,
I hope you are starting to feel relaxed and rested at the ‘Villa’ and able to put your mind at ease a little.
Great stuff that you got the photos back on your ‘motorcycle’ blog, [I’ve printed them off now] I’m sure it will be appreciated by many.
Sending lots of love to you all,
from Danny and Sue x

January 16, 2009 at 8:50 am
Hi Neil,we’ve been thinking of you … and just wanted to let you know I am now officially banned from watching shite tv (bad enough being deprived of MAMMA MIA)….can you have a word! Its War Films and possibly Master Chef at a push-He’ll listen to you.

Sending love in hoards


Aunty Pau’s & Uncle Mel
January 16, 2009 at 12:16 pm
Hi Neil

Glad you have got settled – look at the memories and think of all the places and fun times you have had with your mum, dad, matthew, grandma, grandad, louise, oscar and all other members of your family and all your friends.

If on the other hand as it were you were inclined whilst in mid air you could always get the nurses to turn you round and let you ‘moon’ out of the window. It may brighten your day!!

See you soon
Love Aunty Pau’s

January 16, 2009 at 1:30 pm
We’re all there with you in that we’re thinking of you so much of the time these days. Having just read Louise’s Argos post I have to say the voice recognition software must be one of the best bits of kit, both for you and for all of us readers. Reading the posts every day, we feel priviledged to be able to be with you through this journey. Which way to look – very hard question, and it’s made me cry too. I’ve been looking at photos of us 4 at Glyndebourne and of you and Louise playing Jenga at Mike’s 40th birthday party – lots of good times. xxxxx

rick nicholls
January 16, 2009 at 1:31 pm

When you all moved from London I didn’t know which way to look, the problem being everywhere I went triggered many memories, which at that time made me feel really lost. Thing is bud we did so much stuff together down here, when you all left there was like this massive hole.

I was looking out of the window from the train I took to work this morning. From there I saw so many things that flooded my mind with thoughts of us, The Vanburgh where we had a few late nights, a street down from there where you thought it was funny to lock me in the Vectra on the hottest day of the year (windows shut, heaters on full wack until I nearly passed out), a few streets further down from there where I pushed Oscar in his pram for the first time, London Bridge station where we would laugh at drunken idiots getting arrested on various Friday nights, the WGI building where I swear blind I saw Chuck Norris and a flip chart in a window, The Barrow Boy and Banker (enough said).

Thing is these days all my memories of you, Louise and Ozpants are brilliant, funny and make me truly happy. The entertainment your beard did cause! You look at those pictures mate and I’ll look at mine with the same pride and love.

Love you mate
Cash x

Lula Stefanski
January 16, 2009 at 2:25 pm
Hey You,

Just a very quick one..Why not produce a book from the plattitude?
It would not only make excellent reading but I think it would also provide lots of funding for MND/ Research/ Sheffield Institute etc. Have to go my love and collect the boys.

Take care, look at you photographs, lots of love

Mrs. S x

Jill Bickett
January 16, 2009 at 7:04 pm
I’ve just come back down to earth with a thump and am off to bath my baby son with my husband. It’s the simple things we all take for granted.

Keep up all the amazing work.


January 16, 2009 at 10:17 pm
beautiful post mate. Even the little things like how I’m reminded of your architechural(excuse the spelling!) prowess in the way you describe things. You have one serious eye for stuff neilly and see things in ways not many people would.

And I mean that in more ways than one:)

This blog is a constant reminder of how strong and brave you really are in a situation that few of us can really imagine. I’m sure everyone who reads it is awestruck. Its unlike anyrhing ive ever read thats for sure. Its also a reminder of how you are still very much the man we all know and love and one who has in many ways got stronger than ive seen you. I wont dwell on the irony there. As i type this on my iphone its not the first time i have tears rolling down my cheeks on the train back to plumstead. On a personal note you might be pleased to hear that trailer company offered me the fulltime job today- so timmy might be getting serious finally!

Anyway enough waffle, it was wonderful and heartbreaking to read your post, keep well dude, hoping to come see you in few weeks when I have a weekend not working:)

Love you so much neil xxxx
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