The Plattitude, post mortem

Starting with the anniversary of Neil Platt's death, we're re-publishing his original blog posts chronicling his struggle against Motor Neurone Disease (as seen in our film). We are going to share them over 100 days in the run-up to 21 June 2013, the Global Awareness Day for MND/ALS which is also our day for worldwide screenings of I AM BREATHING.

The blog posts will appear below, as we're using their original dates from 2008 and 2009. Louise, who was Neil's wife, is going to add some context from today's perspective (you'll see her 2013 comments in italics with each post).

As an introduction, Louise tells us why they started 'The Plattitude' at the time. 

louise_160.jpgThe first time The Plattitude was published, we knew how it would end – with the death of Neil. Death was the one certainty that Motor Neurone Disease had brought to our door.

A platitude, for those of you who have not come across the word before, is a remark or statement, often described as flat or trite, but delivered as if it were profound or original, a prime example being "you only live once".

We originally set up The Plattitude (with two T's, as in our last name) as a blog to help us communicate with our friends and family, but by the 100th post it had reached a readership of around 10,000, spread around many different countries. It had attracted newspaper and TV news attention, and of course the filmmakers of I AM BREATHING, Emma and Morag. We even had an 80-year-old lady drive through the snow to find our house on Christmas Eve and give us a £1000 cheque for the MND Association – after seeing us on the news.

Once Neil could no longer work as an architect, writing his blog acted as a lifeline in many ways. His body would no longer be able to catch his son if he fell, he couldn't wipe away tears and make it better, he could only sit motionless and watch others do these things in his place.

Writing The Plattitude gave him a place to ask for help in the form of awareness raising and this in turn would ease some of the daily frustration, it gave him a goal, something to achieve even though he was physically being stripped of every muscle. Readers' comments also provided a constant stream of love and support every day during a very difficult time.

After Neil died many people asked me if I would keep writing posts on The Plattitude, but it had become such a part of Neil that I wondered if they were asking me to keep a part of him alive, something I was not capable of doing. But there was a part of Neil being kept alive, and through a lot of hard work from everyone involved, that part of him has become I AM BREATHING.

The film has already begun to touch the hearts of strangers and spread awareness of this horrible disease, just as The Plattitude did when Neil was alive. Neil wanted the film to take his voice and shout loudly once he had no breath left in him to shout.

I'm sure he would be very proud to know that the grand plan he was only able to imagine from his chair has now begun a life of its own. As I AM BREATHING now reaches people who were previously unaware of Plattitude, we would like to take this opportunity to re-publish it in the run up to Global MND/ALS Awareness Day on 21 June.

Neil was the most open of people. I think it only fair that new friends are given the chance to get to know him, as many others did through The Plattitude the first time round, especially if they have come to discover Neil's story through watching such an intimate time of his life on film. I would like to introduce some of the posts, fill in a few blanks and answer any questions that you may have, so please feel free to ask them.

Louise (2013)

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Showing 8 reactions

commented 2013-11-26 13:32:56 +0000
No story has affected me as much as this has. I have nothing but admiration and respect for Lousie and Neil. I hope Oscar grows up knowing what a great man his father obviously was and how much he was loved by him.
I will be giving my 2 young children and extra big hug and kiss today.
Thank you for letting me share it with you.
commented 2013-10-01 10:56:26 +0100
My grandma was diagnosed 2 years ago with ALS. She died a few months ago. Her last days was so terrible and painful that it is really hard to express. Before she fell ill, our family had never heard of such a disease; we were terrified then. Now She’s good, at least we hope so. A few days ago, on Sunday I think, there was a reportage on the news about ALS, and it was very first time when Poland in general could hear about it. It made me glad. 21st June we had a showing of “I am breathing” in our town. Only 8 people came. I hope the awareness of the ALS will spread around.
commented 2013-07-04 16:11:24 +0100
Watched the film yesterday. I honestly don’t know what to say, Louise. Watching a young couple, with a baby, go through such sadness was… well, as I said, I don’t know what to say. I will say that it made me angry at the unfairness of it all. At least Neil’s story has reached thousands of people and spread the word about this cruel illness.

My sister died after a long and sad illness in 2004. She was around the same age as Neil was when he died. I still struggle with the loss. I hope you have plenty of support as it is hard to cope with such grief.

Take care.
commented 2013-06-17 22:56:33 +0100
My husband Kevin was diagnosed in 2008 aswell and we lost him in 2011 aged 39. I am reading your blog and I can relate to everything you describe even down to gravy & mashed tatties because we would make that for Kevin too, so desperate for him to eat something but absolutely terrified every time he took a bite incase he choked. Neil and Kevin sound as though they were very similar people in that they had an amazing strength and always tried to be positive for others even through their darkest hours! Thank you for posting your blog.
commented 2013-06-15 15:21:43 +0100
Many thanks for posting The Plattitude, Louise. It’s already 160 days since my brother Steve’s final expiration. His spirit is breathing, still.
followed this page 2013-04-21 22:48:17 +0100
commented 2013-03-07 21:14:02 +0000
Every time I read your updates Louise it gives me inner strength that I sometimes find hard to find… I wish I had got to meet Neil he was one hell of a guy… You are an inspiration to me and I am so glad that You’re my friend. Neil would be absolutely blown away by what he, and you have, and are, still achieving. Well done babes x
commented 2013-02-26 01:12:02 +0000
Well done for doing this Louise.Can’t be easy , but hope it brings back memories of the good times with Neil too. Fantastic awareness raising once again.
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