The Right Word

In Helsinki, I AM BREATHING played first in the Andorra cinema – the one founded by the great Finnish directors Mika and Aki Kaurismäki. Some who have seen our film say Neil's humour is Kaurasmäki-like. A welcome Finnish compliment.


After the screenings, audience members offer to show the film on the Global Awareness Day for MND/ALS, even though it will coincide with Midsummer when every Finn goes wild in the country. Others say after the film they went and had a beer “for Neil”.

Sometimes I feel sharing this film with an audience is more of a séance than a screening. In that dark space of the cinema, Neil seems to come to life beyond the film itself. He is almost alarmingly present in a way which surprises me.

It makes me think of that Shakespearean sonnet which goes something like this:

"So long as men can breathe,
or eyes can see,
so long lives this
and this gives life to thee."

Neil’s words live in the present because he had a gift for being a great storyteller of his own fate. But they were not just any words. His huge effort to tell his own story through his blog and interviews was an attempt to find just the right word.

He knew he was communicating the unspeakable.

The day before he died he could barely talk and struggled for breath – but recited his last blog, about his decision to end his life. He spent ages trying to spell out the word "spidow" to his wife Louise who he was dictating to. He wanted to make a joke about her being both his spouse and widow. This was typical of his humour, doggedness – and belief in the magical power of the right word.

My own relationship with Neil began six months before he died, when we started filming with him. Morag had been his friend for years but I was the documentary maker pal she asked to film him. I didn't want to do it at first as it seemed so ethically complex – but it was the words of his blog which convinced me.

I had been wary of making a film which made a “story” out of Neil's suffering. His words seemed to address at least some of these ethical complexities. They empowered him when his body was disintegrating, showed his inner world and reminded us of the power of communication.

Like most great communicators, Neil’s words allowed him to constantly re-invent himself with others. And now, when dead, he still rubs off on them. They take him with them when they leave the cinema, as those who met him did when he was alive.

That's what he wanted. To get under our skin.

To remind us we can walk, breathe, talk… have a beer.

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