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.
Louise Oswald (who was Neil Platt's wife) has just written this on the train to London for the screening of I AM BREATHING at Westminster.
Perhaps nerves are responsible for the fact that I'm just realising now what a huge opportunity this is – and feeling the weight of responsibility on my shoulders to make sure that all those feelings of fear, disbelief and utter heartache are properly put across.
I'm not a politician, I'm not a scientist, I have no medical training; what I do have is a little six year old boy at home, who has already lost his daddy to motor neurone disease and who in the future will ask me questions. I may no longer be in that desperate situation of caring for a loved one with MND, but I do desperately want to have better answers for my little boy. If I don't get these emotions across, then all we are, as a cause, is just another set of numbers.
I'm more than tempted to ask the Lords and MPs to sit on their hands for the length of the Q&A, then point and wave my finger at anyone who moves an inch to scratch an itch; this may be a step too far. It would be a very quick way of getting a huge point across, but now that I think about it, they may think I'm making a comment on their voting skills rather than trying to create empathy for a tiny part of the physical torture of MND. So, as tempting as it is, probably best not. I will try harder to find the right words instead.
I Am Nervous... but I'm also grateful for the opportunity. I have no idea what audience number we may achieve at Westminster, but at least we're getting Neil and MND through the door.
Louise Oswald was the wife of Neil Platt whose battle against MND/ALS we witness in I AM BREATHING. She is currently touring the United States to support the film's theatrical run.
I was sitting in the IFC Center in New York a couple of days ago, waiting to do a Q&A with our audience after the screening of I AM BREATHING, a fact that I am still amazed at, even though I'm sitting here writing on an American Airlines flight to Los Angeles for yet more screenings.
I often think of the ending of the film, and my thoughts are with the audience at this point as they are just experiencing the full emotional whack of this devastating disease. I was in New York as the result of a beautifully crafted film which tells a story, without sensation, and has the ability to reduce almost every audience member to tears. It's not fiction, it was my life, and it was real.
What struck me as I was waiting in the foyer of this cinema in New York was not the amazing reaction of our audience members, it was the reaction of the audience coming out of one of the other films screening there, a violent psychological thriller from what I could gather by listening to the conversation in the foyer. A group of well-dressed adults, I'd say in their late sixties/early seventies, men in chinos and blazers, women in dresses and jewellery – both, it would seem, wearing a lot of hairspray (this was New York!) were discussing who killed who and why. They were laughing and joking about it, about the fact they couldn't follow the story but enjoyed it anyway. It made me remember a meeting to discuss how we can reach people with I AM BREATHING, aware that we wanted everyone to know it's not all depressing despite the subject matter, keen to push the fact that many have found it 'life affirming' and that the issue of dying affects us all and shouldn't be something difficult for us to look at. Therefore our best approach would be to reiterate the positivity in the film. We thought that 'a depressing story about a man dying from a horrible, torturous, degenerative disease' would not be the right way to go!