“My re-acquaintance with the when of things has confirmed how right I was to value my time. You could all do me a favour – don’t let yours slip by unnoticed.” These few words were forced on to a computer screen with difficulty through voice-activated software by the late Neil Platt, who is the subject of the absorbing documentary I Am Breathing.
The words are addressed to people with Motor Neuron Disease, but they could in fact apply to any of us who are healthy. Savour the moment as best you can, don’t let your time go unnoticed. The words, as they arrive in the middle of the film, make you think, all the more because they are uttered by Neil, who knew that he had only a few months left.
Those closed window curtains at the beginning of the film are like stage curtains, drawn open to reveal the scene at the Platt's home in Harrogate. Neil compares MND to “a life sentence,” a curious choice of phrase surely. It started with his foot slapping against the ground, and he thought he needed a new pair of shoes. After the requisite tests, MND was diagnosed on February 8, 2008. The disease would see the former architect use a walking stick, then a wheelchair, before paralysis from the neck down confined him to his own special chair. At home in Harrogate, he becomes utterly dependent on his wife Louise, his mother and close friend Rick, who all help out.
Neil, who grew up in a suburb of Leeds, tends to be humorous, certainly on camera, gallows humour mostly. We see him leafing through coffin catalogues, observing that a cardboard coffin can be more expensive than a wooden one. “He can be a cheeky bugger,“ says Louise, whose selfless care and dedication for her husband is striking. She patiently spoons him his food, just as she would their young son, Oscar, for whom the video diary-style film is made. Neil is writing Oscar a letter for him to read when he is older.
He also has a so-called ‘memory box’, into which he places a number of personal objects to help Oscar build a picture of his dad. These include Neil’s first teddy bear, his treasured, only slightly scuffed leather jacket, his lighter, which needs a flint. Some of these items are shown in silence towards the close of the film and in its own way it is a quietly powerful sequence.
There is poignant camcorder footage showing Neil as a healthy young blade, walking around Edinburgh as a student, drinking, party-going, images of happy times socialising with Louise and friends, taking motorbike rides. We see him 20 years ago or so, standing on a tongue of land as a dramatic waterfall roars above. There is a certain sense of foreboding with all that wild water.
His father was “an honourable man,” he reckons, who gave him all he wanted to give him. David Platt died at 51, also of Motor Neuron Disease, which can be hereditary. Again, more poignant footage, his dad driving the family car, mother in the front, an impudent smirk from Neil in the back. The car journey fades into the lights of an oncoming, spectral city. It is desperately sad, two good men mown down. In fact David's father George, Neil's grandad, also died in his early sixties from the disease.
As we see in the film, Neil’s mother is a cheery soul, putting up as brave a face as she can, given the circumstances, even though she is about to lose the second of the two men in her life to MND. It is very much a love story and it is the youth of the couple that makes it seem unfair. Neil and his wife have been married four years, one year of which has been spent with the disease, he observes at one point. If their having to deal with this stuff so early on seems unfair, then their stoicism and patience is all the more remarkable.
Nevertheless, you do feel that their new-ish family life should be progressing like any other neighbouring couple, as they idly watch Tellytubbies and the X Factor. We see Neil and Louise treat themselves to fish and chips and try to live a normal and light-hearted a life as is possible, which in large part they do.
The camera sometimes leaves the confines of the house, and focuses on a bird hopping around the lawn, or frames the garden rimed with frost. Or it pans outside the window, to scale up a pallid mackerel sky, one of those fresh, rainless winter evenings, veined with the suggestion of early darkness. These are transient, tremulous moments also worth recording, a break from Neil’s trying situation, inside the window.
Even before you see Neil, you hear the eerie, relentless sound of the ventilator, a bleak mood music that endures throughout. When we hear Neil talk, we also must hear the tidal coming and going of the ventilator. He talks with some difficulty, given that his nose has tubes attached to it at all times.
Early in I Am Breathing, Neil denounces his voice-activated software as “a piece of shit.” But he only gives up instructing it after telling it repeatedly that he wants the three words “at our end” to appear.
“Things have not gone awry at our end” is the phrase he wants. While the software hears the first few words, it continually mis-hears and prints something else instead of “at our end.” So he gives up. The next time you curse your computer screen, just think about Neil. He finally died on February 25, 2009, at 34 years of age, a year after diagnosis.
I Am Breathing is a profoundly resonant, and even curiously life-affirming film, in its own, poetic, elusive way.
The documentary will be screened as part of a special global screening at 6.00 pm tomorrow, June 21, in The Lighthouse, Dublin.
A limited run of further screenings commences at The Lightouse on Friday June 28.
The aim is to raise awareness about Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease.www.iambreathingfilm.com