At a time when most people would want to retract from the world and slip away, leaving a memory and image of themselves in their prime, Neil decided to come forward. He decided to put the underfunding of MND research and the realities of the condition front and centre.
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For the last couple of months, I've been traveling round the country shooting my new documentary. Last time I made one, I didn't really have an interview technique. I just let people talk. Let them tell me their story. I still do this to a large degree but having spent a good chunk of the last year watching the films of Claude Lanzmann, old Parky interviews and the great BBC Face To Face box set, I've recently found myself trying slightly more challenging methods. I've found the best way to start an interview is to ask the subject how they define themselves. This inevitably leads to a faltering start but it puts their mind in gear and gives me a clue about what they really want to talk about, how they see themselves and, more importantly, how they'd like to be seen. It's an insanely tough question to answer. How does anyone define themselves? And when a film camera invades the life of a normal person, unaccustomed to being documented, how do they choose to present themselves?

In my film school days, up in Edinburgh in the mid-nineties, I knew a guy called Neil Platt. He was a very close friend of some of my very close friends. He and I never really hung out but we'd have chats at shitty student parties and if we saw each other in the street, we'd stop and say hello. I'm not sure how he defined himself back then but to me he was always the affable northerner with a wry observation. We weren't ever really 'in touch' so the lack of contact for a decade and a half was in no way odd. But I heard how he was doing occasionally. He qualified as an architect. He married Squeeze, a girl from that same gang who I'd also only been around fleetingly. I heard they'd had a baby son. And then I heard he was dying.

Neil's dad had died young of Motor Neurone Disease, a horrific, as-yet incurable condition in which the body irreversibly shuts down the motor nerves in the brain and spinal cord. Sufferers typically decline by first losing their physical capabilities and eventually their respiratory ones. The mind is unaffected, rendering the patient a virtual prisoner in their own body as they lose the ability to eat, communicate and breathe unaided. It's a horrible death. Neil's made all the worse by his young age and all the crueller by the recent birth of his first child who was learning to walk and talk as his father's ability to do so waned. At a time when most people would want to retract from the world and slip away, leaving a memory and image of themselves in their prime, Neil decided to come forward. He decided to put the underfunding of MND research and the realities of the condition front and centre, documenting and publicly discussing his situation. He appeared in local and national media and kept his achingly candid and often hilarious blog The Plattitude updated right up until the day before he died. Perhaps bravest of all, he invited a documentary film crew in to capture his last few months. That film - I Am Breathing - is released soon.

The film is, of course, not an easy watch, documenting as it does the decline of an extremely charismatic, lovable and loving man. But that is all the more reason to watch it. There's more than that, though. The TV schedules are full of 'worthy' films, this is different, it's not just worthy, it's worth seeing. Directors Emma Davie and Morag Mckinnon bring an unexpected artistry to the project, the film is beautifully shot, it feels meditative and delicate. Quietly observational and incredibly respectful, Neil's dignity is preserved to the very end and the audience hangs on his every word. It's a tender yet unflinching portrait of a man and his illness as two quite separate entities.

Already the film is gathering acclaim in film festivals. It won the Best Documentary prize at Riverrun, it's been officially selected for Hotdocs and the makers are reaching out to people around the world to help organise local screenings of the film on June 21st. This is a film which politically and artistically deserves to be on your radar.

The feeling I'm left with about the film and Neil himself is this; how many of us, when afforded the rare opportunity to define ourselves to the world would be brave enough to choose to be represented by the cruel manner of their death so that awareness might be raised to save people not yet even diagnosed? Neil's charisma was so strong that he actually escapes such definition as some kind of victim but the bravery and selflessness that he, his wife, family and friends displayed by allowing such an intensely private and difficult period to be so intricately documented should be rewarded. Please watch the trailer and share it on social media, check out the website and do what you can to get this film seen.

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