I Am Nervous
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.
Our biggest shot yet
Just when you think we are at the peak of our MND campaign, even more exciting news pops up! On 14 October I AM BREATHING will be screened at the Houses of Parliament in Westminster.
This is our chance to show the film to people who have the power to change things. It is thanks to your efforts that we are in this position. We are now asking for a final push to make a lasting impact on Parliament. This is our biggest shot yet.
Photo: Jim Trodel/Creative Commons
The screening will only be a success if MPs actually attend it. To make sure all seats are taken we really need your help. MPs and members of the House of Lords need to hear and talk about MND, and we want to encourage them to take action.
So please contact your local MPs now and inform them about this screening. Here is a sample letter:
I am writing as your constituent to ask you to attend a screening of a critically acclaimed film I Am Breathing, which is taking place at 6pm on Monday 14 October 2013 in Committee Room 4a, House of Lords.
The film tells the story of a young man, Neil Platt, diagnosed with motor neurone disease (MND) just after his son Oscar was born. Neil had two aims before he died – to leave behind his words and memoires for Oscar and to raise awareness of MND.
As you may know MND is a cruel disease, leaving people unable to walk, talk, eat and ultimately breathe. The cause of MND is unknown and there is no known cure. The film captures the reality of Neil’s final months living with this devastating disease.
I Am Breathing received its UK premiere at the prestigious Edinburgh Film festival in June and has been shown all over the world.
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!
"Stunningly alive" – what the U.S. thinks about I AM BREATHING
Leading up to the week-long runs of I AM BREATHING in cinemas in New York City and Los Angeles, Emma Davie (the film's co-director) and Louise Oswald (who was Neil Platt's wife) were guests in the studio of the Huffington Post's channel, HuffPost Live. This is their 20-minute interview.
On RogerEbert.com, the site of the late and legendary movie critic, Scott Jordan Harris has written one of our all-time favourite reviews:
"'I Am Breathing' is an earnest and important film. It deserves to be seen by anyone who is interested in documentaries and anyone who is interested in the simple human stories movies too often overlook."
In a new review, IndieWire called I AM BREATHING "a genuinely inspirational documentary on one man’s last days".
"What is most noteworthy about “I Am Breathing” is what it is not: horrendously depressing. Sure, it is incredibly sad, especially every scene with young Oscar. But “I Am Breathing” is not a documentary intended to induce sobbing. It is, instead, a film about dying that is stunningly alive, wildly optimistic, and always insightful and entertaining."
Under the headline "Strong Enough To Laugh", the New York Times also points out how "Mr. Platt's good-humored attitude helps keep the potent material from turning mawkish" and concludes that the film, "amid the cinema's hit parade of violent but curiously instantaneous deaths, reminds us what it means to bear witness to the very end."
In the Village Voice, Ernest Hardy writes:
"Platt and his story are inherently moving, and co-directors Emma Davie and Morag McKinnon wisely employ a light, unobtrusive touch as their camera captures the erosion of Platt's health. Platt never gives in to self-pity, and is instead a funny, droll, philosophical subject."
Film Journal is republishing Neil Young's review for The Hollywood Reporter which ranks the I AM BREATHING "among the year's most moving films":
"The last couple of years in one tragically truncated life are chronicled with a winning combination of sensitivity and humor in I Am Breathing."
On About.com, Jennifer Merin reminded readers her earlier 5-star review which concludes:
"Neil Platt reveals a profound honesty and wisdom. In the short time span of the film, he becomes a friend, a member of the family. Anyone who has comforted a loved one as death nears will recognize and honor the sensitivity with which this film is made. The film is not only a moving tribute to Neil Platt, it is also his legacy, one that touches and teaches all of us. RIP Neil Platt, and thank you, your family, the filmmakers and the Scottish Documentary Institute for giving us I AM BREATHING."
Women's eNews writes about this "profoundly moving documentary":
"This heartbreaking and inspirational film is a must-see."
NY-based Film critic James van Maanen writes on his blog Trust Movies:
"What separates us as human beings from other life forms? This question's been asked and answered many times, but according to Neil Platt -- the subject of what is certainly the most moving and maybe one of, even the best documentary of the year -- it's our adaptability. As shown here, Neil certainly proves adaptable. He's dying, you see, and must adapt to that.
How he does it makes for the meat of this 73-minute movie that had me -- and everyone around me -- at the press screening for us cynical critics moved to the point of long silence at the movie's close, followed by an audible inhale/exhale. We won't even go into the tears. How the filmmakers -- Emma Davie and Morag McKinnon -- achieve this is exactly right. They go for, and capture, such intimacy that we're right there, as close to Mr. Platt as possible, not only in terms of distance but of thought, feelings and spirit. And, my, does Neil have a lot of that last one!"
Back on the big screens!
This picture may look familiar to many. Just before our Global Screening Day, the MND Association had been offered advertising space all across the London Underground and railway stations in England – and they chose to promote I AM BREATHING. (Thank you to everyone who sent us photos of the billboards.)
Many of you hosted screenings, tweeted, blogged, and shared our campaign with others. A petition to get the film into more cinemas passed its target of 2,000 signatures within days, with many people suggesting cinemas we then contacted.
All this matters so much given how difficult it is for a small documentary to get onto the big screens. After more than 250 community events and festival screenings, and backed by the MNDA poster campaign and your petition, we've now been able to convince more cinemas across the UK to show the film.
I AM BREATHING goes USA
The East and West Coast of the Unites States will be treated to a week-long theatrical run of I AM BREATHING!
On September 6 the film will open at the IFC Center in New York, followed by another week in Los Angeles from September 13 at Laemmle Music Hall.
We've noticed that the screenings were particularly successful when a local MND Association was involved. Therefore, this little office is now working hard to engage ALS organisations (the American equivalent of MND) to support our upcoming screenings in the US.
If you live in the US and would like to see I AM BREATHING screened in your local cinema do get in touch with suggestions. You can also support our US theatrical release by organising your own public screening. Please have a look here to see all booking options.
Feel free to spread the word and let America know we're coming!
I AM NICKY BHAGAT and I established the MNDA of India
This is a series of posts by people who are hosting screenings of I AM BREATHING around MND/ALS Global Awareness Day.
I am Nicky Bhagat and I am showing the film in India. I established The MND Association of India 20 years ago after my husband Vimal, an actor-director, was struck down, losing both his body and his voice, an actor’s basic tools, snatched from him by motor neurone disease.
Like Neil Platt, he had used his last months to tell his story, dictating laboriously in a hoarse whisper to a loving and patient old friend. He had to race against time as his voice was fading fast. Like Neil, Vimal would have been gung-ho to play his last role as himself – had he but time…
I am much honored to be participating in this inspirational Global Screening of I AM BREATHING.
I hope that soon we may find, if not a cure, at least a way of slowing down MND’s cruel, relentless slide. I am convinced that this could be speeded up by inviting patients and carers more deeply in the search, especially those who may be research-oriented scientists or spiritualists. In fact, the answer to most neurological puzzles may well lie in such multilayered holistic studies involving those closest to the condition.
I will be screening the film on 29 June 2013 in Dehradun (details and RSVP here) and later at the Indian Medical Research Institute as well as hosting it at my own residence.
Can you also host a screening, wherever you are?
The When of Things
Over the next few days, I AM BREATHING will play in 164 screenings (and counting) all over the world.
Thanks to the incredible community of ordinary people, promoters, documentary enthusiasts, distributors, festivals, MND/ALS activists and volunteer translators, it will screen in venues ranging from cinemas in New York, Copenhagen, Moscow to universities in India, a library in Rwanda, a taxi cab in England... and maybe, most important of all, in living rooms of families whose lives have been touched by what Neil called "this bastard of a disease."
Increasingly I think this film is not just about Neil, but about all of this community.
It's about those who will hold their breath before they screen the film, reminded of how this disease may ravage their own bodies, or those who will be remembering the person they love who has died from it. There will be some who watch this with no speech because of this illness, or with no ability to move or breathe – like Neil. Those who live the unimaginable lives of paralysis that most of us can barely dare to think about.
In this film, and in his blog, Neil forced us to think about it not just for himself, but for those who couldn't speak. He wanted to "smack you in the face" he said. He has, and continues to do so after his death through sharing his vulnerability. By showing his weakness, paradoxically Neil gained strength and wanted this for others too. He wanted it for those suffering of MND in particular – but also for others whose lives are touched by suffering.
I think that includes all of us. Aren't we all affected by what Neil called the "when of things"?
We live in strange times in a culture so afraid to show pain and suffering that methods of communication like Facebook are often about showing a facade to the world which is the very opposite of vulnerability. Neil knew this online community could be used to connect in a more honest, rawer way. This is what has happened in a startling way with this film. Every day, we are moved by the posts shared on this website and Facebook which show such courage.
I think the film is not really just about Neil any more, but with the incredible uptake of this Global Screening Day, more than ever, it is about this amazing community of people all over the world – people living with MND/ALS, carers like Lindsey Lonsborough in England whose husband Mark who has been living with MND for 11 years now, or a teenage sufferer of MND in Kenya.
When we screen the film on 21 June it is as an offering of hope, a call to action – and a stand in solidarity for you all. Thank you for your bravery, your generosity – your determination not to be invisible.
I AM DARYA BASSEL and we are showing the film in Ukraine
This is a series of posts by people who are going to host screenings of I AM BREATHING on MND/ALS Global Awareness Day.
I am Darya Bassel, and with the team of International Human Rights Documentary Film Festival Docudays UA (Kyiv, Ukraine) we are organizing the screening of I AM BREATHING in Kyiv because this is the film everyone should see.
We saw I AM BREATHING for the first time in Amsterdam at the International Documentary Film Festival in 2012. We were impressed by Neil’s story and by his courage. The film left us with the feeling that everyone who is in hardship now or thinks that he/she is should see this film, and that we want to bring it to the Ukrainian audience so much.
We’d like to thank the organizers of the Global Screening Day. We truly hope this campaign will help them reach their goals and we are absolutely sure that the Global Screening Day will change a lot of lives.
We are going to show I AM BREATHING on 21 June, the Global Screening Day. Details and RSVP here.
Can you also host a screening on 21 June, wherever you are?
I AM TREVOR CRANNEY and I AM SIOBHAN ROCK
This is a series of posts by people who are going to host screenings of I AM BREATHING on MND/ALS Global Awareness Day.
I AM TREVOR CRANNEY and I was diagnosed with ALS
I am a 40-year-old father of three amazing children, a hockey coach and a loving husband. On December 14th, 2012, I have been handed a death sentence. My wife Lynn and I have been together since high school and have overcome challenge after challenge. This one will be our biggest yet, but that doesn’t mean we won’t accept it. We continue to make the best out of every moment we have together. It has become my mission to be a voice and to help raise awareness.
I AM SIOBHAN ROCK and I was diagnosed with ALS
The summer 2011 was a busy one. I gave birth to a baby boy, celebrated my daughter’s 2nd birthday, my eldest son’s 20th birthday, my wedding anniversary and I was diagnosed. I was 39 years old. Although my journey is filled with uncertainty, I build courage and strength from the support of my husband, family and friends. Since my diagnosis, I continue to live life to the fullest and strive to raise awareness about ALS and help others.
Together we are showing the movie in Ottawa. Details and tickets here.
This campaign is an wonderful opportunity for us to participate in raising global awareness. Neil's story has touched our heart in a very special way. It is with honour that we will be hosting the movie screening I AM BREATHING with family, friends and members of the community. We are thankful that Neil has shared his personal journey so openly. It has inspired us. May it continue to inspire others around the globe. It is our hope, that our story, along with Neil’s and others living with this horrible disease, generates the required awareness leading to the appropriate funding, support and eventually a cure.
Can you also host a screening on 21 June, wherever you are?