I Am Breathing

Neil Platt was 33 when he first developed the symptoms of motor neurone disease. Happily married, with a young child and a job he loved, he lost everything within the space of a year as his bodily function rapidly disintegrated. The thing about living with serious illness is that one realises how little most people appreciate being alive and having the freedoms that a healthy body provides, but Neil was never one of those people. His story is one full of the thrill of living - enjoying the outdoors, riding his motorbike, falling in love. His worry that it might not have amounted to much is difficult to take seriously in the face of a film that reflects that vigour. The film itself - and the blog that goes with it - illustrates his determination to communicate the important things even as he faced the loss of his ability to speak.

Motor neurone disease affects approximately one in every 70,000 people. It attacks the brain cells that control movement, gradually taking away the sufferer's control over their own body. The speed of it varies but in some cases it progresses very fast. Like most seriously disabled people, those with this disease gradually disappear from public view, becoming visible only in twee daytime television broadcasts and women's magazine articles, through other people's accounts. Neil's insistence on telling his own story with his own voice, on getting that voice out there for the rest of the world to listen to, is itself a fierce act, evidence of a rare vitality.

From Neil's accounts, it's clear that life remains rewarding through the loss of a great deal. He speaks sadly of giving up his job but his designs will outlive him, like the various treasures in the box he has prepared for his son. His wife stays by his side not simply out of duty but, quite obviously, out of love, and because she has fun with him. His son, Oscar, takes everything for granted in the way young children do, and seems to share his passion for life. Oscar may, in time, also share his disease; though unspoken, this is clearly another reason why raising awareness is so important to him.

In its pattern, this is a familiar tragic disease movie. There are several every year and it goes through the motions, with its little interviews, its snippets of video standing in for memories (unable ever to fully capture the way life is lived through memory when one can no longer move). Neil's control over the narrative, however, places it in a rarer group of films - those that actually get it and succeed in communicating across the social gulf between the sick and the well. And it has something else going for it, which is simply that Neil and his family and friends are lovely people, fun to be around. This highlights the awfulness of the loss but makes for a film that is often upbeat and entertaining. Ultimately, it's a film about life; it's just condensed.