I am Breathing: A dying man who reminds us just what life is for

This is not an unremittingly bleak documentary, despite its harrowing subject

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Critics are not naturally the most emotionally engaged of people; and film critics in particular are rightly cynical about the ways directors attempt to manipulate the public’s tear ducts. Nevertheless, at various moments during the press screening of I Am Breathing there were at times unmistakeable snuffling noises in the invited audience…. and I don’t think it was just critics suffering from seasonal colds.

Perhaps this was not so surprising, given the film’s subject and content. I Am Breathing is being screened in this country and worldwide this Friday, which is the Global Awareness Day for Motor Neurone Disease; and it is an intensely personal documentary covering the last weeks in the life of Neil Platt, a British architect who died at the age of 34 in 2009, after the disease had within two years reduced him from a vibrant and energetic man at the peak of life, to an inert shell unable to move a single muscle.

In the case of the Platt family, there was a tragedy beyond the fact that Neil had been stricken by a condition of progressive and dramatic neurological degeneration. His grandfather and father had been similarly afflicted: although around 5,000 people in the UK suffer from MND at any one time, only around 5 to 10 per cent of those are cases which have a genetic origin.

This was the main reason Neil Platt and his wife Louise invited the directors Emma Davie and Morag McKinnon into their home, to film his final months as the disease completed its dreadful final assault on his physical being (it has no effect on cognitive faculties). They had a child, Oscar, just one year old at the time: Neil’s overwhelming desire was that somehow a cure might be found that would give his son a chance, should he too fall victim.

So not only is the film itself designed to raise public awareness of this condition – of which Professor Stephen Hawking is the most well-known sufferer: all the revenues from the global screenings this week will go into MND research and development. If readers want to get involved in this project themselves, the website www.iambreathing.com gives all the necessary details.

Currently in the UK, only about £2m a year is devoted to the funding of research into MND, which may reflect the relatively small number of people affected – compared with various forms of cancer, for example: but given that the condition was first identified back in 1874 it is somehow shocking that there is not only no cure or treatment – medical science does not even know what causes the disease.

Perhaps if it affected children or younger people, there would be more attention paid. But most typically it attacks people – mostly men – in later middle age: Neil Platt’s case was unusual in the earliness of its onset. Indeed, the poignancy of the film is somehow increased by the fact that Neil was, even as he became inert, startlingly handsome. Perhaps one shouldn’t admit to this thought, but there is something especially incongruous in seeing a physically beautiful young man being spoon-fed by his wife and unable to hold or hug his tiny son.

His wife Louise – nursing both her son and husband – speaks of how “cruel” it was that Neil was degenerating at exactly the same time as Oscar’s physical coordination was developing naturally: “I would find it even more sad to see almost the same thing happening in the opposite direction with Neil at the same time. I started having to spoon-feed Neil just as the spoon was being grabbed off me by Oscar.”

Yet the person in the film whose predicament seemed to me most unbearable is Neil’s mother, Lynne. Her son, perhaps wanting not to know the truth, seemed slow to realise the onset of MND, when it first manifested itself with what he described as “my right foot flapping a bit… I thought that I needed a new pair of shoes”. Yet when his mother saw him limping as he walked towards her at a railway station, she knew, instantly. It was exactly the same way her husband had limped, before anyone had diagnosed him with MND.

Yet this is not an unremittingly bleak fly-on-the-wall documentary, unbearable though it is in its almost final moments as Neil Platt struggles desperately to breathe: “He never wanted to die. He went kicking and screaming,” says Louise. There are also moments of almost sublime black humour, most notably when Neil, putting the family’s financial affairs in order, describes his attempts to terminate the telephone line rental. Even after he explains to the call centre his reason, he is asked: “Can we offer you an extra three months for free, Sir?” As he replies, deadpan, that was a better deal than any of his doctors could come up with.

This reminded me a little of what it was like when one of my sisters was dying of cancer, at the age of 32. Humour became more important than ever, not just as a necessary distraction, but also because what was happening was almost unbelievable and therefore surrounded by absurdity. And yet, as each day went past, the light from the dying got smaller and the darkness bigger. This aspect of a young family approaching death’s imminence is communicated with complete integrity in I am Breathing: an integrity that is only enhanced by the refusal to witness the moment of death itself.

That is because, unlike the more fashionable documentary makers’ topic of so-called assisted suicide, this is not a film about death. It is a film about life. The right response, or so it seemed to me, is not to come out of the cinema crying, but to feel grateful for life’s gifts, which can be so randomly snatched away. That must be why the film records Neil dictating his blog (“Plattitude”) into a voice-activated computer, for posterity: “My reacquaintance with the when of things has confirmed how right I was to have an awareness of and value my time. You could all do me a favour – don’t let yours slip by unnoticed.”

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