I just came back from the movie screening of “I am Breathing” which was presented by the Lebanese Association for Neuromuscular Diseases or “LAND” in partnership with the British Council at Metropolis Empire Sofil. My mind has been occupied with countless imagined scenarios of what it might have felt like to be in Neil Platt’s place.
I don’t think many people know much about Motor Neurone Disease or MND besides “the thing that Stephen Hawking has“. In fact, not much is known about MND at all. To put it simply, MND is when the brain stops sending signals to your motor neurons, the cells which control voluntary muscle activity including speaking, walking, swallowing and so on. In other words, you start losing control of your own body. Neil himself ended up fully paralyzed from the neck down. What exactly are the underlying causes and how to stop their progressions is still not fully understood, leaving those diagnosed with it forced to face an extremely uncertain future.
Enters Neil Platt. Neil was diagnosed with MND at the age of 33 and died a year later. His son Oscar was 4 months old when the family received the bad news and almost two years old when Neil died. The story seems to be almost stereo-typically devastatingly sad. And in some ways it is. Neil was unfortunately neither the first nor the last person to suffer and die from MND. But what makes this particular story more accessible to the rest of us is simply the fact that Neil documented the whole experience.
He had a blog called Plattitude and you can still read his entries from July the 8th 2008 to February the 22nd 2009. The day after, his wife Louise announced that his condition had deteriorated. On February 25th 2009, the family announced: “It is with a very numb feeling I tell all of you that have been so caring and supportive that Neil past away at 11:15 a.m. today”.
I have just begun reading Plattitude and cannot possibly insist hard enough that you should read it too: You’ll find what it felt like to be an awesome bad-ass father and husband who decided to face reality; you’ll find moments of deep thought and moments of casual silliness; you’ll find laughter and sadness, hope and despair.
A few months later, Louise and friends and family started looking for video footage of Neil and on September the 6th 2013, I Am Breathing, directed by Emma Davie and Morag McKinnon, was premiered.
The Lebanese screening at Sofil – which was for free – served as both a tribute to Neil Platt and an opportunity to raise awareness about those among us who suffer from MND. The media was invited, wine was served and pamphlets were distributed. In some ways, this was L.A.N.D’s big debut, its first opportunity to start campaigning. What is it exactly? L.A.N.D is “committed to the identification, treatment, and cure of Neuromuscular Diseases through programs of education, advocacy, research, development and outreach.”
You can follow them on Facebook and visit their website. You can also check out I am Breathing’s Website and follow them on Twitter.
The Guardian – My battle with Motor Neurone Disease – Neil Platt’s Last Interview
Plattitude – Neil’s Blog
You can also find me on Twitter @JoeyAyoub