I Am Breathing: A dying father’s film for his son

When Neil Platt was diagnosed with motor neurone disease, he knew he would not see his baby boy grow up. So, in the finite time he had left, he made a film of the family’s final year together so that one day his son might piece together a picture of the father he never knew.

Neil with his baby son, Oscar. Picture: complimentary

A battered leather jacket, bought in Armstrong’s vintage emporium in Edinburgh’s Grassmarket and “still looking as good as the day it was bought”. A tweed cap. An ancient brown and white teddy, worn floppy-eared and threadbare from years of cuddles. A driver’s licence. A Zippo lighter, with the note that it “needs a new flint”. A silver ring, “bought in Edinburgh in my first year at university (1992), worn until 2001 on my right thumb”. A stainless steel Tissot watch with a brown leather strap, the back engraved with a child’s name: Oscar.

How to make sense of a life? It takes more than mere objects, that’s for sure, though they’re a starting point, perhaps. These particular objects make up a memory box that will hopefully, somehow, help a son piece together a picture of his father.

Because Neil Platt won’t be there to celebrate this or any other Father’s Day. He won’t see Oscar grow up, or graduate, or fall in love. He will never watch fearfully as he learns to ride a motorbike, or beam with pride as he plays the guitar. He never even had the chance to kick a ball around the garden with him before motor neurone disease – the condition that had claimed both Platt’s father and grandfather – took hold and left him paralysed from the neck down. All he could do was watch helplessly from his chair, unable to even turn his head or scratch an itch, as the world carried on around him.

Oscar was just four months old and waking up to his first Christmas when Platt was coming to terms with the devastating diagnosis. It was December 2007 and his right foot had been giving him problems for a while. At first he thought he might just need new shoes but, with his family history, it soon became clear that he was showing the first signs of MND. That Christmas he was contemplating the awful irony that the son’s first might be the father’s last.

Six months later his hands had stopped working, forcing him to give up his job as an architect. After nine months, his legs quit and, by Oscar’s first birthday, a video of the party in the garden – all balloons and cake and family jollity – shows him struggling to breathe. So, faced with a finite amount of time left, he set about making a film, a love letter, if you like, to the son whose hand he would no longer be able to hold on life’s uncertain journey.

“I do spend a lot of time thinking about Oscar and the questions he may one day have wanted to ask me,” says Platt in I Am Breathing, the moving documentary about his final year, which has its UK premiere at Edinburgh International Film Festival on 20 June. “How do I anticipate things he would find useful to know about me in a life 15, 20 years from now? How do I even begin to tell him? What really happened of any importance in my 34 years?”

The film takes its title from the slow, laboured in and out…in and out…of Platt’s ventilator, an ever-present melody from the machine that is keeping him alive. It is a story surprisingly full of joy, of the love between a man and a woman, the strength of a wife, the happy curiosity of a baby son, and the uplifting sense of a family making the most of the time they have left. Moments of desperate mundanity – dunking a biscuit in a cup of tea, eating fish and chips, watching a Chuck Norris film – are deeply touching in their intimacy.

There’s humour too. When Platt calls a mobile phone company to cancel his contract he is asked why. “Because I’m dying,” he tells the call centre. A moment of silence is followed by, “but we have some fantastic deals at the moment, we could give you another three months free.”

Platt arrived in Edinburgh in 1992, a talented architecture student at the art college. A certain Louise Noble, a Fifer, caught his eye at the time, though the pair didn’t get romantic until they met at a party, years later, while both were working in London. He proposed in Portugal after just three months, they married in 2004 (Neil in a kilt) and Oscar was born in 2007. Their life – and their family – was complete.

He already knew he was at risk of contracting MND. After his father’s death in 1986 at the age of 51 – Platt was 22 at the time – a specialist informed him he had a 50-50 chance of getting the disease too. But he decided to get on with life, live in the moment, be true to his father’s memory. “My dad was outgoing, fun-loving, honourable,” he says. Lessons to live by, anyone would agree. And even if he did get the disease, he reasoned, he still had until his 50s. He could never have anticipated it striking 20 years sooner.

Motor neurone disease affects around 300 people in Scotland at any one time. Caused by the degeneration of motor neurons in the brain and spinal cord that control muscles and movement, the result is a progressive muscle weakness and eventual paralysis. Some cases, like Platt’s, are inherited, while others, like Stephen Hawking’s for instance, are a slow-progressing form of the disease. But while the muscles are paralysed, all the senses are still intact and even a crease in clothing or being in the same position for too long can be painful.

One of the elements of the disease that frustrated Platt the most was having an itch, or a hair brush across his face, and be unable to do anything about it. Whatever form of disease you have, though, there is no cure and it is invariably fatal, usually as a result of respiratory failure.

Could Oscar get it too? No-one can be sure, but the possibility galvanised Platt’s desire to raise awareness, funds and, ultimately, hope for a cure. He didn’t know how long he would have left, but it wasn’t enough. There was so much more he wanted to do. He wanted to be ‘me’ for longer.

One thing he did know, however, was that, once he lost the power of speech and the ability to swallow, it would be time to check out – “last orders at the bar”. He didn’t want to be any more of a burden, just a body sitting in the corner, unable to communicate.

“Being able to communicate is our strongest, most powerful freedom,” he says in the film. “I wouldn’t be able to read stories to Oscar. He wouldn’t be able to get a reaction from me and he wouldn’t understand.” So, with the time he had left, he wrote to his son, speaking to his laptop using notoriously unreliable voice-recognition software. It was a laborious, often frustrating process. “I can’t advise you how to live your life,” he says. “What I will say though is you should definitely have a crack at a musical instrument.” He suggests growing a beard, to keep his face warm while riding a motorbike in winter. And family members are given various important jobs in Platt’s absence.

1 Rock climbing and abseiling: Uncle Matt.

2 Orienteering: Uncle Simon.

3 Hill running: Uncle Cash.

4 Hang gliding: Uncle Colin.

5 Castle exploring-type stuff: all the aunties.

Fourteen months after diagnosis, in February 2009, Neil Platt died. Perhaps his most important piece of advice was this. “My reacquaintance with the when of things has confirmed how right I was to have an awareness of and value my time,” he said as he was growing weaker. “You could do me a favour – don’t let yours slip by unnoticed.”

• I Am Breathing goes on general release on 21 June (www.iambreathingfilm.com), which is also Global Awareness Day for MND (www.mndscotland. org.uk)