He only had the blink of an eye, but Simon was tireless
Director Simon Fitzmaurice never let motor neurone disease stop him from doing what he loved, writes Lesley McKimm
I first met Simon Fitzmaurice five years ago, it was October and I'd just read his script for the film My Name is Emily. I'd loved it, and had been equally blown away by his short films and the articles he had written about his illness - MND.
I was going out to his house in Greystones to meet him, to have a first conversation about how to get his film made. I was nervous, I wasn't sure how it would be to talk to someone who was completely incapacitated and I suppose afraid of seeming awkward or saying the wrong thing.
But like everyone who went to meet Simon, I was struck by the warmth and sunniness of his home, the friendliness and incredible calm of his wife Ruth (at that time balancing nine-month-old twins Sadie and Hunter on either hip), and then struck of course by Simon himself.
It's really strange now to think that I never actually heard Simon's voice or saw him move in any way. A man who I later knew loved to talk with his hands had none of those attributes left to him when I met him. But he did have two very powerful ones - his eyes and his power with words.
His blue eyes will stay with me - you could see affection, warmth, laughter, irritation, surprise, all of those things in them. But I got to know Simon through words and in our emails back and forth. It sounds old fashioned in a way to get close to someone through the written word, but I did and his voice in his writing shone through - vibrant and full of life. I can hear it now.
In that first meeting, I remember, he literally drank up absolutely everything we were saying, I could tell even at this point, that here was a force to be reckoned with.
And so we set off on a mad and wonderful journey.
I spent a lot of the first year or so as we were trying to raise the money in a state of worry. And by our reckoning we needed more than €2m - not an easy amount to raise for a first-time feature director. Who just also happened to be completely paralysed.
Simon kept working on the script, drafting and polishing, never missing a deadline (and still writing his book It's Not Yet Dark at the same time). We worked on raising finance, travelling to markets and festivals, meeting potential financiers from all over the world to get half an hour in which to pitch our film and get them to read the script.
We told and re-told the story of My Name is Emily - of this teenage girl and her road trip to find her father - finding love and growing up along the way. So far so good. And then we would hit them with Simon.
At the best of times most financiers are nervous of first-time directors - they're not sure what they're going to get and if this first timer can pull it off. So we would launch in with, "well the thing is our director - it's his first feature and he's actually completely paralysed. He has motor neurone disease" - just keep going now, don't pause for breath - "and he can only move his eyes and that's how he writes. With an eye gaze computer and he speaks with a computer voice. And he's amazing. No one has ever directed a feature film before who is completely paralysed. But it's going to be fine".
Silence and jaws hitting floors.
It made for the oddest pitch. And at this point, it either went into polite incredulity and a backing out of the room, or a genuine interest in whether or not this would even be possible.
We had a lot of rejections. So many. But enough people did believe in Simon and we pushed and we pushed, and it started to come together - we had money from the Irish Film Board, from Sweden, money from crowdfunding, the Irish tax incentive, the BAI, TV3 - every penny counted.
And then there were the people around us who just simply loved Simon and all wanted to help - his sister Ruth gave up work for about six months to be his personal assistant; his nurses, Paula, Adam, Marion who really got him out the door on all those early mornings; and people who had never even met us, giving their time for nothing. So many kindnesses.
And then we were ready to go.
Prepping for the film was hard. It's the time when every single department (design, camera, wardrobe, locations, etc) all want you. Choices - all requiring swift decisions, and Simon worked and worked. Can you imagine having to type everything with your eyes, dragging and dropping every single letter? It is painfully slow - even though Simon was a master at it. He would work all day and email well into the night.
We also were planning for Simon only to shoot half days - we didn't think he would be physically able for more than that. But how were we to get his vision for the film out of him in time? By the end of prep we had only had about half of the film storyboarded. Simon didn't even want to talk about doing half days - it was like the elephant in the room.
The first day of the shoot arrived. And there he was at 7.30am. I don't think I'd ever seen him that early in the morning. I didn't really know the depths of his stubbornness. But something happened that was quite profound. He was shooting 12- hour days. Unthinkable. Even the previous week when the most we'd have had him for was five. And though initially sunny in late September, that soon gave way to storms.
Simon couldn't get into most locations because of wires and cabling with his wheelchair, and his ventilator was too noisy for sound. So he had to be outside in a tent. Fine in balmy September, not so fine in October. We replaced our lightweight tent with a borrowed one (from the Vikings set). On the worst days we could see puddles of water inching closer to his cables and we held on to the poles.
Simon was oblivious: his eyes locked on the screen, on how the shot lined up, on the performances. Directing. Brilliantly. Try and tell him to go home early at your peril. Simon was fearless.
He shot every minute of every day. And loved it. If ever I saw the power of doing something you love, it was there with Simon. It rejuvenated him. And he was able to forget, for maybe the first time in years, about MND.
I hope I never judge or underestimate someone with a disability ever again.
We made Simon's lovely film. We had intense discussions and debates all the way through the edit. (Yes, arguing with a man on ventilator - but Simon would truly make you forget all that.)
I remember once going to see him and feeling passionately opposed to something Simon wanted to do creatively, we just were at odds on this. And sitting down, slightly red in the face having my spiel.
"That top really suits you, Lesley. You look lovely today" - in his big booming American computer voice.
Ah, Simon the charmer.
Simon was funny. That's one of the things I enjoyed about him most. You could see the instant flash in his eyes when he found something funny. A great man for the quip, very dry and droll. It was a cruelty of the disease that it was hard for him sometimes to type fast enough to come in with the quick joke and yet he did, many times. He was fiercely bright and eloquent, he loved people, he loved interaction. He was kind.
Having worried for the first two years of knowing him, I then stopped. Going to the Toronto Film Festival was a highlight. The stars aligned. It was the perfect city, with wide, flat, bump-free pavements. I remember Simon's nurse, Adam, careering down the streets, us laughing and trying to keep up. And the occasional commanding "Stop!" from Simon when he wanted to take in a building or a view.
I started to think that Simon was indestructible, undefeatable. But it wasn't to be. The emails and communication slowed over the past nine months - down to a trickle. And the old worries came back.
Simon fought the fight longer and harder than anyone I know. He achieved so much. He touched so many. And I really am not saying that lightly. He said he made My Name is Emily to show his kids never to give up.
But he showed me and everyone who worked with him that, too. I was very lucky and privileged to have him in my life and to call him my friend.
Lesley McKimm is project manager of production with Bord Scannan na hEireann