A Day in the Life of...

Hello everybody,
I just thought that you may be wondering why I am so quiet.  Well, this is just a quick note to let you all know that nothing has gone awry at our end.  We are in fact filming a documentary about life in general and life with motor neurone disease in particular.  When completed we hope that it can be shown whenever and wherever possible in order to continue raising the profile of MND.

I will do my best to leave another post later on today.  I say I’ll do my best because yesterday was completely and utterly exhausting.

Much love,
Neil

A-day-in-the-life-of_640.jpg

‘Did it feel intrusive to have a documentary being filmed while you were going through such a difficult time?’ is often the first question people want to ask of me when they learn about I AM BREATHING.

It’s a question I find interesting because my answer, usually, is not the expected one. My memory of it may have changed a little, but even if it has, then the lasting result is the important one.  As you can probably tell from reading many of Neil’s posts, he dealt with having motor neurone disease in a very practical way, he thought about it a lot, wanted to understand it and faced it head on.  When he became emotional about it, there was always his sense of humour to rescue him and lift him back up before he fell too deep. This is quite obvious in some of his posts on The Plattitude.  But sometimes I felt that he should let himself fall deeper, let his mind go to the darker thoughts instead of burying them, or he would never give himself the chance to feel ready to go.  I think this is what the filming did for Neil.

When he was in a room with just Emma and the camera, there was nowhere he could go, nowhere to hide his emotions, and he didn’t need to. He knew that the documentary, whatever it turned out to be, would only come to fruition after his death.  He wanted to talk, to get as much out of his body as possible.  When Neil talked on the blog, he knew he would get comments of support in response.  I rarely had to wipe away tears when he had been talking to his computer, but talking to the camera was different, and I believe good for him.

For me, it wasn’t so much about having filmmakers in the house, it was about having more friends around, other people to talk to, more people for Oscar to get to know who weren’t in uniform.  Looking at my emails, I managed to catch up with a lot of friends that weekend, and write to people who had sent me lovely messages over the blog.  I had started writing to two other mothers who had contacted me through The Plattitude, both in exactly the same situation, our children only months apart.

So I think my answer to the question of how I felt having the filmmakers there, would be that it created time for both Neil and me to communicate, separately and in different ways, but important ways for both of us.  Once the camera was no longer present, the emotions it had drawn out were still there and we were able to communicate together about feelings that may never have been discussed.

I have a hard time with the word ‘intrusive’. Neil and I wanted to show the worst of the disease and we couldn’t do that without letting the camera go where it needed to be. It was there by invitation, so I don’t think there’s a place here for the word ‘intrusive’ at all. – Louise (2013)

Do you like this post?

Showing 4 reactions


followed this page 2013-04-24 21:48:27 +0100
@breathingfilm tweeted this page. 2013-04-24 18:17:40 +0100
How 'intrusive' were the directors of #IAmBreathing when filming with Neil and Louise? #Plattitude #MND #ALS http://www.iambreathingfilm.com/a_day_in_the_life_of?recruiter_id=2
followed this page 2013-04-24 17:53:32 +0100
commented 2013-04-24 17:50:47 +0100
These were the comments on Neil’s original post:

Sara
January 11, 2009 at 12:51 pm
Well done all of you – can’t wait to see the documentary.

Thinking of you all as always.

Lots of love,
Sara x x

Cass Glaves
January 11, 2009 at 3:48 pm
Hi,
I read that post from Louise’s brother and thought maybe my post was lost….it said very little, I don’t know you, you don’t know me, but I read your story in the Daily Mail and I just wanted you to know…you inspired me. I am in awe of your humour and courage when faced with such a piece of utter bad luck as this…I don’t know that I would have such humour. Keep the faith, whatever that is. And know that you have touched other humans in a way that many don’t even come close to.
Keep safe.
Cass x

Tim
January 11, 2009 at 6:56 pm
short film eh? Well, if they need an editor you know where to send them:)

Muchus Lovus

Timus x

Rachael
January 11, 2009 at 8:21 pm
Hiya Sweetie,

I don’t normally write on the blog as I prefer to speak to you but I know how tired you have been and that’s why I haven’t rung. I just want you to know that I am so so proud of you, of all that you are doing, proud that you are my friend. I have been absolutely blown away by the outporing of love that is directed at you, Lou and Oscar on the blog, but I really shouldn’t be surprised because I know how much I love and care about you and you’ve obviously had the same effect on alot of people throughout your life, that just goes to show how absolutely, truly special you are.

Rest well in the hospice, I’ll be thinking of you as always (you’re never, ever far from my mind these days).

Lots of love to you, Lou, Oscar, Matt and the rest of your family.

Love you millions

Rachael, John and Isaac x x x x

P.S. I’ve got my bike and I’ve started my training for the triathlon. Bring it on!

jerry.hayes
January 11, 2009 at 9:21 pm
Neil,

I just wanted to drop you a note to say hi. I read your story in the Mail after one of the Shrivenham guys said there was an article over Christmas. I had heard that you were ill, but hadn’t understood the gravity of the situation. The article was very moving.

I cannot agree more with your comments about young Oscar giving you a kiss and a cuddle. If you are anything like me, being a Dad is certainly the proudest thing I have done, and I’m sure you are the same. I think I can see it in your face from the pictures on the site!

I am now a regular reader of your Blog on Plattitude. (Kevin Harwood pointed me in its direction.) I am glad you have had more good days than bad. I am also a bit hacked off that you never managed to invite me to London for that infamous beer. Full of empty promises Mr Platt!!

Best wishes to you, your wife and young Oscar. I’m sure he knows he has a top bloke for a dad (even if he is an architect).

Take care of yourself Neil.

Jerry Hayes

jerry.hayes
January 11, 2009 at 10:51 pm
Neil,

Hope your film gets out in to the real world.

Jerry

angie
January 11, 2009 at 11:42 pm
hello to you all just foundthis site in faebook. ive just in told i have mnd 3wks brfore xmas,it was a shock but slowly coming to terms wit it dont no which type yet but hpefully at end of febuary i carnt walk at all and my arms and hands are getting weaker and weaker,can just manage to get myself in un out of bed but its again getting harder,day by day.so i no what you are all going through,weve just got to keep going and neil what you said about your mobile phone i id the same but they would not cancel mine un less i paid them £80,contracts up in may thank god

Danny Milner
January 12, 2009 at 2:57 am
Hi, Sue here,
How about a short book on your life story? Not just about MND but stories about all your escapades, travels, etc: It could include your website ‘blogs’ too. You have already included some eg, about uni, Louise, and motorcycly one with photos, and many of them each fill a page.
You have led an exciting life from what I know and still appear to have so much to tell and in such an amusing way, and by letting others see how well are coping you would help give others the strength and humour to get by on your words. It is a slow progress publishing etc, but it was just a thought, as a book is for keeps and would act as a reminder, which would also help towards raising donations in the long term too.
I hope you have success with the film/docu, and that it will be shown on TV very soon. Let us know when, I do try to keep up with your daily news now.
By the way the ‘motorcycle’ blog with all the photos on I think is missing off the site. I hope you can get them all back on as people will want to see how gorgeous you all are! I am still getting used to computer/printer [plus building/decorating work being done] so I never did get to print them off for Danny, [he remembers you with the beard] but he hasn’t got the internet, so thats why I sometimes reply.
I hope you are having better days now, and resting somewhat, and not too exhausted by keeping up all this work. At least you’ll get some rest after wednesday.
sending lots of love to all,
from Dannny and mum Sue xxx

Chris Small
January 12, 2009 at 11:54 am
Hi Neil
I met you at Douglas and Sara’s wedding back in 2003. It’s brilliant that you and Louise are having such an impact in raising awareness of MND.
I thought you were amazingly measured in your response to some of the Daily Mail comments – but as you said the supportive comments far outweigh the negatives and I’m sure some good will come from that piece.
I’m currently working at Edinburgh University. You probably know about this already but last year a centre for motor neurone disease research was set up at the university. See http://www.euanmacdonaldcentre.com/
We’re planning to do an article about the work of the centre in the next edition of the alumni magazine. Maybe they would be interested in the film you are making? Happy to contact them about it if it would be helpful.
We’ll done on making the film.
Thinking of you all. Love,

Chris

cash & scoob
January 12, 2009 at 3:02 pm
Howdy!

Hope the filming went well and didn’t exhaust you too much. Sorry it meant we couldn’t see you but we’ll be up to drink your beer (Cash) and eat your sports biscuits, jelly babies and any other snacks I can lay my hands on (Scoob) very soon!!!!!!

We love you all

A & R xxxxxxxxx
THE THIN SPACE BETWEEN LIFE AND DEATH
Film by Emma Davie & Morag McKinnon
Watch it online
Order the DVD
Pay it Forward
Make a donation
STEM CELL REVOLUTIONS