Simon Fitzmaurice: Lights, camera, nerves: how can I direct a film when I can’t speak?

I’m nervous. We are driving into Ardmore Studios, a place I love, our base of preproduction operations. But although we started months ago, this is the first time I have been really nervous. I was a little tentative meeting the crew, but nothing like this. Today I meet the principal cast, Evanna Lynch and George Webster, and as we park in our spot, I have a pain in my stomach.

I have emailed them both lots of times and seen them in scores of audition tapes for Emily. But meeting them is different. I'm different.

I warned them, of course. That I’m different in person than in email. I’m slower in real life. That is what I told them.

Meeting new people is tricky. Or old people from my life before motor neuron disease. But I am well used to it now. I just roll with it. That is not why I am nervous today. It is not because I have never met them before. It is because this is my job. It is not a hobby. It is my passion, my calling. No other creative work has ever fulfilled me the way filmmaking fulfils me.

This is the first film I have made since my body changed. My mind, my heart, my soul, have only changed the way everyone’s develop. I am nervous today, petrified really, because I am about to find out if this changed body will still allow me to direct actors.

I can write the script. I can storyboard. I can choose frames with my director of photography, art direction with my production designer, costume, cast, locations, music. I can go through the film frame by frame in the edit. I can make all the hundreds of decisions that comprise this job. But it will all be for nothing if I can not create an intimate working relationship with two people I have never met.

I don’t hate my body

I don’t hate my body. There is nothing wrong with my make-up. My dad never gets sick, not ever, and before motor neuron disease I was the same. It is hard to believe that the medical profession does not know what causes motor neuron disease. They speculate, of course, and a few errant genes have been identified in some people with the disease. But they do not know. Most people with motor neuron disease are not alive long enough to be studied for more than a few years.

I am angry. With every consultant in Ireland who has any involvement with people who have motor neuron disease. I have met a lot of them and as far as I can see there is not one advocate among them for mechanical ventilation, which is a lifeline.

I speak only for myself in this. And if anyone has a problem with my opinion, bring it on. Prove me wrong.

My tools are gone

Working with people is part of what drew me to film. I am not made to write in a garret alone. Directing involves collaborating and encouraging others to give their all. I love it. I was good with people before motor neuron disease, able to disarm them, put them at ease. But all my tools are gone. Body language, touch, varying tones of voice, a few stories, a relaxing joke. Gone. Nothing left but my thoughts appearing slowly on a screen. Descartes’ brain in a bottle.

I make it into my office and wait. George arrives first. He is gregarious, warm and unusually relaxed for someone meeting me for the first time. I realise that he is putting me at ease exactly the way I used to myself. We like each other immediately.

Evanna arrives later. This is different. Her performance will be the soul of the film. We had been looking for Emily for over a year, and the team and I did not agree on our shortlist of actors. But the moment Evanna’s tape arrived in the office, there was no more debate.

I think I am shy. Ruth doesn’t agree. She says shy people don’t enjoy public speaking, which I have always done, and still do. Even egomaniacs get embarrassed, I once said, and my wife, Ruth, laughed, and said, “Get over it, you’re not shy.” It’s all relative, I suppose. Evanna is a self-confessed shy person. I am definitely shyer now than I used to be.

Evanna comes into the office and we sit alone in silence as I type with my eyes. We have had a long and detailed correspondence in the months before this moment. About film, literature, poetry and raspberries. She is a fiercely intelligent young woman, passionate about a lot of the same creative elements that drive my life. She is the perfect Emily.

In writing I get to be myself. My thoughts and feelings flow as they once did in conversation. And though I lost the ability to speak, I never lost my voice.

So I feel like I know Evanna even though we are only meeting now. I am slower in real life, I warned her a few days ago in an email, referencing the actual time it takes to create the flow of my writing, my correspondence. And Evanna responded with something that would define our friendship from that point forward and also make me a hell of a lot less nervous than I could have been today. She said in her reply that she was a lot more comfortable expressing herself in email than in person.

Not being shy (yes, I admit it), this was news to me, a life lesson. To learn that my situation, which I had naively thought was unique to those in my physical condition, was quite a common human experience, was a profound awakening to the dumbass that I am.

So the shy girl and the extrovert who cannot speak, both of whom prefer to express themselves in writing, sat in the silence, and slowly, very slowly, got to know each other.

It was enough. I was afraid my means of communication would not be enough to direct my film. But the written word is powerful. A few choice words at the right time is all I would have ever done, with or without motor neuron disease.

I love film. Others will judge the value of my work. But that is not why I do it, for the praise of others. I do it because, in all seriousness, I’m a worshipper who sits in silence in the chapel of the cinema. But more than that, I do it for a simple love of the work itself.

I am a pariah

I am a pariah. Medically, in Ireland. Not to the Health Service Executive: it cares for me and values my dignity. But to the consultants who care for people with motor neuron disease, who research it, I’m the invisible man. You would imagine that people in the business of caring for individuals with motor neuron disease and those who research it would be interested in my particular case. You would be wrong. From the moment I was mechanically ventilated, all contact with the motor neuron disease medical establishment stopped. That was six years ago. To them, the moment I was ventilated I ceased to exist.

I don’t hate my body. I have had a long time to think about the disease. I would like to know the cause, of course I would. I would like to know the identity of the criminal. I no longer think about a cure. Cures are for the newly diagnosed. For slowing the progression. I left that behind years ago.

I don’t hate my body because I don’t want to hate it. I don’t believe there is anything inherently wrong with my body, with my genes or the code of my DNA. Got a problem with that? Prove me wrong.

My opinion, for what it’s worth, which to the medical profession is zero, is that motor neuron disease is caused by an outside presence, a trespasser. So I don’t blame my body. I love my body. For its resilience. For enduring. For being alive. And staying that way.

• My Name Is Emily will be in cinemas from April 8th