Over the next few days, I AM BREATHING will play in 164 screenings (and counting) all over the world.
Thanks to the incredible community of ordinary people, promoters, documentary enthusiasts, distributors, festivals, MND/ALS activists and volunteer translators, it will screen in venues ranging from cinemas in New York, Copenhagen, Moscow to universities in India, a library in Rwanda, a taxi cab in England... and maybe, most important of all, in living rooms of families whose lives have been touched by what Neil called "this bastard of a disease."
Increasingly I think this film is not just about Neil, but about all of this community.
It's about those who will hold their breath before they screen the film, reminded of how this disease may ravage their own bodies, or those who will be remembering the person they love who has died from it. There will be some who watch this with no speech because of this illness, or with no ability to move or breathe – like Neil. Those who live the unimaginable lives of paralysis that most of us can barely dare to think about.
In this film, and in his blog, Neil forced us to think about it not just for himself, but for those who couldn't speak. He wanted to "smack you in the face" he said. He has, and continues to do so after his death through sharing his vulnerability. By showing his weakness, paradoxically Neil gained strength and wanted this for others too. He wanted it for those suffering of MND in particular – but also for others whose lives are touched by suffering.
I think that includes all of us. Aren't we all affected by what Neil called the "when of things"?
We live in strange times in a culture so afraid to show pain and suffering that methods of communication like Facebook are often about showing a facade to the world which is the very opposite of vulnerability. Neil knew this online community could be used to connect in a more honest, rawer way. This is what has happened in a startling way with this film. Every day, we are moved by the posts shared on this website and Facebook which show such courage.
I think the film is not really just about Neil any more, but with the incredible uptake of this Global Screening Day, more than ever, it is about this amazing community of people all over the world – people living with MND/ALS, carers like Lindsey Lonsborough in England whose husband Mark who has been living with MND for 11 years now, or a teenage sufferer of MND in Kenya.
When we screen the film on 21 June it is as an offering of hope, a call to action – and a stand in solidarity for you all. Thank you for your bravery, your generosity – your determination not to be invisible.