Louise Oswald (who was Neil Platt's wife) looks at space travel for inspiration in our battle against MND/ALS/ELA.
While we were in LA with I AM BREATHING, we had time to visit Space Shuttle Endeavour at its final resting place in the California Science Centre. Before you get to see the Shuttle itself, you're ushered through an exhibition where you can touch the wheels from a spacecraft and see a realistic mock-up of mission control at work, but there was also Grand Finale, an almost heart-stopping installation of all the Shuttle launches together on one screen, which served as a strangely beautiful reminder of the 7-strong team lost in the disastrous Challenger launch in 1986.
As all the other 134 shuttles reach orbit, they disappear from the screen leaving just the image of the remains of the Challenger explosion falling back to earth, like a firework in daylight, all you could see was the grey trails (look at row 2, column 10). I watched it twice. I was standing there because of another brave astronaut, Neil's childhood occupations had him graduating through 'Cowboy' and 'Wizard' to 'Astronaut', and eventually he landed as an Architect.
I've managed to heal myself pretty well and I now have a wonderfully happy home life but there is one thing that I still feel is a hangover from my time watching Neil fight MND; I feel like I've lived through 'the worst', and I now find it difficult to connect with certain emotions because I either had to bury them to get through the day or rationalise them and take out the panic element. It is part of being human though and I miss these emotions sometimes. I want to be able to empathise again.
Sometimes a powerful piece like this space shuttle montage will bring emotions back. I think it's part of grief, you never know where the next trigger is going to come from and it always takes you by surprise. I feel like I'm now at a stage where these emotions would be welcome again; death is what gives life its meaning.
Immediately after this poignant piece of video, and almost as if Neil had designed the exhibition himself, the next installation was all about how to poop in space! I have to say watching the film about space toilets, and seeing the complicated contraption of a solution to the problem, reminded me very much of the Platt household; it was good to see some similarity in ability challenges between those who actually get to reach for the stars and those who have even the most basic of dreams taken away. There are some things that must be approached with humour in the most different extremes of situation!
After this, we were ushered in to a small cinema space where they showed an amazing time lapse of Endeavour arriving at LAX piggy-back on a jumbo jet, and then making its way through the streets of LA to its final resting place – a huge effort made by a massive team of people. I think the whole trip to see Endeavour reminded me that amazing things can be achieved when people pull together. It gave me a new verve for carrying on this fight.
It's been an incredible journey travelling in the I AM BREATHING orbit this year. I've spoken to audiences at every screening I've attended, film professionals in LA and politicians at Westminster – but the one person who really sticks out in my mind is the wife and mother who came along to a screening organised by St. Michael's hospice, which was where Neil had died. She was in the middle of the hell, MND was taking away her husband and she was at the beginning of that spiralling feeling, the point where you feel like your being dragged under by a whirlpool. It was like meeting myself five years ago.
I am no longer in that hell, but my biggest wish is that I AM BREATHING is giving a little glimmer of something being done about it. I wish that it could be a tool for those who are still in that hell, a way of letting people know what they're going through for those who find it difficult to get help, and a way of fundraising for those who want to fight back at this disease.
It's incredible to think that just a few weeks ago I was sitting in New York, slightly dismayed that I couldn't reach 'the other audience' who would rather watch mindless violence than harsh reality – but now I am excited about the multiple-week theatrical release in Brazil coming up – and three BAFTA Scotland nominations!
This is what we wanted, we're reaching new people all the time. The recent release of our DVD and the video-on-demand offer have made this even easier. It feels like one small step closer to getting MND into the awareness of a mainstream audience, and that's what we've wanted right from the very beginning of filming – to get at least one story out there.
We need that giant leap towards a cure. (All space puns intended.)
Pictures: Ben Kempas