Thanks to Twitter, I became aware of a movie that was creating a buzz on social media and in the news. The documentary is called I Am Breathing and is the story of a 34 year old man and his immediate family as they come to terms with his diagnosis of Motor Neurone Disease.
All I knew about Motor Neurone Disease (MND) was that it was fatal, incurable and was the cruellest of conditions, rendering the sufferer unable to move, swallow, breathe and ultimately sustain life. All the while being of sound mind. It's the one that tops the list of conditions people in the medical profession would least like to have.
I wondered why this man chose to share his painful story with anyone outside of those closest to him. And I must admit the chance to get inside his head, coupled with my morbid curiosity, carried me along to the afternoon screening on its opening weekend.
It's taken me a few weeks to make sense of what I think and how I feel about this incredible man.
As the story unfolded, in the true, gritty and at times uncomfortable style of a good documentary, I was far less interested in the, what felt like, voyeuristic aspect of watching someone live with MND and completely fascinated by Neil as a person.
Neil Platt was an architect - an artist - someone who was defined, in large part, by what he created. Neil was also, latterly, a blogger. As with many artists I know, my guess is Neil was driven to create.
I think I am coming to understand this about artists. The need to create, to give of themselves.
I believe Neil's blog became the only way he was able to leave something of himself behind. The only way he could share himself with others. And this final and most brave sharing is how we came to know him.
He said, on camera, that the freedom to communicate has to be the strongest and most powerful freedom. To this end, he had an advanced medical directive which stated that his ventilator should be switched off when he could no longer swallow or speak. This stopped me and I'm sure, the whole theatre, in our tracks.
Is this why any of us blogs, to exercise this most powerful freedom? I love how it allows those of us who share that drive with Neil, to give of ourselves, to have the platform - for the most part, freely - to leave something of ourselves behind.
And this is my reflection on Neil Platt. He showed incredible dignity in his fight with MND and incredible courage to allow the world to see him, as he thought, at his worst. And I'm sure he was so much more.
As he faced his own passing, he started to write a letter to his toddler son, Oscar, to give him a sense of who he was.
As he faced his own passing, he started to write a letter to his toddler son, Oscar, to give him a sense of who he was.
If you watch I Am Breathing or read his blog, I believe you will see Neil Platt, not at his worst, but at his best. And when his son Oscar reads his dad's blog and the unfinished letter and watches the documentary, I'm sure he will know exactly who his dad was.
Even just for your next post, take inspiration from Neil Platt, the bravest of bloggers who shared the piece of work he knew would be his last and make it about something.
Even just for your next post, take inspiration from Neil Platt, the bravest of bloggers who shared the piece of work he knew would be his last and make it about something.
Make it about you.
You can read his blog here:
I went to see the Who live in concert recently. More on that next time. For now, this seems appropriate.
