The film I Am Breathing documents the last year of a young architect’s life as he succumbs to motor neurone disease. His wife tells Sarfraz Manzoor why he chose to leave this moving legacy
By Sarfraz Manzoor
One evening in late October 2007 Neil Platt returned home after a busy day at work. Platt, 33, an architect, walked through the door of his London house and immediately sat down.
Without taking off his coat, he removed his shoes and socks to inspect his toes. There was something not quite right with his right foot. Neil told his wife, Louise, that he had been limping during the day but that, oddly, he was not in pain. The foot seemed to be ‘slapping itself’ on to the ground. Louise reassured him that it was probably nothing, suggesting he might just need new shoes.
But there was something else. Neil now noticed that he could not the lift the toes on his right foot as high as he could those on his left. He made an appointment to see his doctor. Louise was not unduly worried until Neil returned from the appointment: the doctor had given Neil his personal mobile number, insisted he undergo several tests and, because of Neil’s family history, referred him to a neurologist.
Neil had his suspicions about what was wrong; Louise was less convinced. But when Neil’s mother came to visit a few weeks later and saw her son limping towards her at King’s Cross station, she knew immediately what the matter was. The last time she had seen that limp was on her late husband.
Neil’s father, David, had died at the age of 50 from motor neurone disease (MND), which had also killed Neil’s grandfather at 62. His father’s death had made Neil acutely alert to the first symptoms of the disease. When he was 22 he had been to see a genetics specialist in an attempt to assess his chances of developing it. After six months of research the specialist came up blank.
He could only say there was a 50-50 chance that Neil was a carrier of the same defective gene as his father and grandfather, and even that was a guess. But on February 7 2008, after doctors had eliminated every other option (there is no specific test for MND), Neil was diagnosed with the disease.
MND is a brutal, merciless disease that rapidly causes physical deterioration, leaving sufferers unable to walk, swallow and eventually even breathe on their own. Someone with MND can typically expect to live about two years from diagnosis. It affects 5,000 people in the UK, with about 1,000 people diagnosed each year. More men than women are sufferers, and it is predominantly a disease of middle and later years (Neil was at the younger end of the spectrum). Although there is a genetic factor for some of those affected, the science is unclear on the causes. But while more than £300 million is spent annually on cancer research in the UK, the average annual spending on MND research is £2 million.
There is no treatment for MND, just management. So far only one drug, riluzole, has been developed for people with the disease. Riluzole can slow the rate of deterioration and extend life by, at best, about six months. One often hears stories of people battling and beating cancer, but no one beats motor neurone disease; once Neil was diagnosed, everyone knew how the story would play out.
For Neil and Louise the diagnosis seemed particularly cruel because they had recently become parents. The couple had met in 1994 as students at Edinburgh’s College of Art, but they had only begun a relationship a decade later when they ran into each other at a mutual friend’s party in London. They had been dating for a few months when Neil surprised Louise on holiday in Portugal by asking her to marry him. ‘We hadn’t been together for very long, but that was Neil – cheeky and confident,’ Louise said as we sat together in a cafe in Edinburgh. ‘The barman looked relieved when we got back to the hotel and Neil gave him a thumbs-up.’
They married in November 2004 in a Scottish stately home. In the wedding video Neil can be seen, in a bow tie, kilt and sideburns, dancing with Louise in the evening ceilidh. They moved to south London, and Louise became pregnant. Their son, Oscar, was born in August 2007. By the time of Oscar’s first Christmas, Neil and his doctors were fairly sure that he had MND.
‘My most vivid memory of that time is of when we went to my parents’ in Edinburgh,’ Louise told me. ‘I went for a walk at the beach with my mum and Oscar, and it was the first time I talked to Mum about there being a real possibility that Neil could die. I remember holding in the tears until I said, “How am I going to tell Oscar?”’
As the disease took hold, Louise found herself having to look after two dependent males. By Christmas 2007 Neil was supporting himself with a stick; by the next April he was in a wheelchair. There were times when the disease progressed with alarming speed.
‘There was a big jump in 2008, between Neil’s birthday in July and Oscar’s birthday in August,’ Louise said. ‘On Neil’s birthday I have photos of him wearing fingerless gloves, meaning he could push his own wheelchair, and by Oscar’s birthday he couldn’t lift his arms, needed a head rest and had lost a lot of weight. He was gulping like a fish.’
By September 2008 Neil could no longer use his arms at all, and Louise had to feed him. ‘The physical parallels [between Oscar and Neil] were unbelievable,’ Louise recalled. ‘I started having to spoon-feed Neil just as the spoon was being grabbed off me by Oscar. Oscar was pulling himself up just as Neil had to start using a hoist to pull himself up. And when the wheelchair arrived, so did the baby walker.’
It must have been hard to reconcile yourself to this turn of events, I suggested.
‘The fact I had a baby did me a huge favour,’ Louise, who had worked in film and television costuming before having Oscar, said, ‘because you go from being someone who is selfish in life to being a mother, to being a carer, and I was just doing all of that at the same time.’
But did you ever give in to self-pity or envy at those not in your position, I wondered.
Louise replied by telling me a story. The family had gone on holiday to Menorca with some of Neil’s relations. Oscar was ill with a tummy bug. One morning he woke early and Louise pulled him into bed, whereupon he had diarrhoea. ‘I remember putting Oscar into the bath to wash him,’ she recalled, ‘and I turned and Neil was standing in the doorway on crutches. Then suddenly he crumpled and was on the floor.’ That low point prompted Louise to change her outlook. ‘I switched my thinking from self-pity to thinking how privileged I was to be going through this so closely with Neil as he went on this part of his journey through life,’ she said.
Neil’s condition meant that Louise needed at least two other adults in the house at all times, three if possible. ‘I had to fill the calendar with whoever I could get – friends, family, they all worked as a tag team and gave up their time,’ Louise said. ‘We also had two palliative-care team members every week morning who came to wash and dress him.’ And then there were the other specialists who were in and out of the house: the GP, district nurse, palliative consultant, social worker, occupational therapist, speech therapist, dietitian, physiotherapist, MND nurse specialist, respiratory specialist, bloods nurse and night sitters.
The family moved to Harrogate so they could be close to Neil’s family, and Neil transferred to the Leeds branch of his architecture firm. To get to the office he would take a taxi to the station and then use a walking frame, but once he began to lose mobility in his hands, seven months after his diagnosis, he had to give up work. His brother Matthew, who is younger by five years and works for the police, took six months off to help. ‘I did all the shaving,’ Matthew said, ‘and breakfast was my job – as was the whole toilet thing. Neil was able to have a good existence because he had an army of friends to help out.’
‘Considering what we were going through, we had an amazing amount of good times,’ Louise said. ‘We saw our friends and family much more than we would normally have done, and Oscar was always surrounded by people.’
There were so many people who wanted regular updates about his condition that in July 2008 Neil alighted on the idea of starting a blog – he called it Plattitude – on which he could share his daily news. It would be, he wrote in his introduction, ‘a tale of fun and laughs with a smattering of upset and devastation’.
At the beginning the blog was Neil’s way of keeping in touch with those close to him, but as word spread and strangers began to read it, Neil realised that he could raise the profile of a misunderstood disease. The posts became much more frequent: from the end of December 2008, for the next two months, he posted almost every day, however much physical discomfort he was in and whatever his mood. If he couldn’t manage a post, he would ask Louise to write one for him.
At first Neil typed the blogs himself. When that became impossible, he would ask whoever was in the house to help him, and also began using voice-recognition software. In one entry he described his changing reaction to his condition. ‘Stage one was disbelief tinted with dread as I was given the diagnosis,’ he wrote. ‘Having been here before with Dad, it was never going to be pleasant. Stage two was to ignore it for as long as possible in order to enjoy every possible second with my beautiful wife and newborn son in our newly bought family home. Stage three arrived when it was no longer possible or realistic to ignore the symptoms.’
In summer 2008 Morag McKinnon, a drama director who had made a number of short films and who had known Neil and Louise since they were all students in Edinburgh, came across the blog. McKinnon contacted Emma Davie, a documentary-maker friend, suggesting they make a film about Neil. Neil immediately agreed to let the documentary makers spend several months filming him.
‘For me the film was so ethically complex that at first I didn’t want to make it,’ Davie said. ‘But when I met Neil the force of his desire to communicate demanded that we just get on with the job.’ The project crystallised when Davie and McKinnon decided to use words from Neil’s blog to narrate the film. ‘This empowered us,’ Davie said, ‘because it stopped the film from concentrating on his physical body and reminded us of the power of his mind.’
The resulting film, I Am Breathing, has already been screened in 14 countries, with many more international screenings to come on June 21 – MND Global Awareness Day. Fifty per cent of the profits will be donated to the MND Association, the other half invested in outreach work. The film is bleak, unflinching and moving, yet morbidly funny. In one scene Neil describes trying to arrange for his phone to be disconnected.
‘They want to know why I want to end my contract,’ he tells the camera. ‘They say, “We have some great deals,” and I say, “But I am dying, so I don’t need to use the phone,” and they say, “Would it make a difference if we threw in three months extra?” I told them, “If you can do that, you’re better than all my doctors put together.”’
‘They filmed everything they could,’ Louise said. ‘They interviewed Neil, they interviewed me and they made sure they got the general drudgery of running the house.’ We see Neil in his wheelchair, a ventilator tube obscuring his face while his son plays on the floor around him. We see him worrying about what questions Oscar will ask about his father in 10 and 20 years’ time, and we also see Neil constructing a memory box filled with objects to remind Oscar of his father as he grows up: a wallet, a leather jacket, a hat, a watch. It is clear that Oscar provides Neil with the strength to face the disease and keep going.
‘Neil lived with the disease because of Oscar,’ Matthew said. ‘He wanted to see his son become a little person. Me? I wouldn’t want to hang around. I could not watch my arms and foot stop working, I couldn’t put my mum and partner through it.’
As he deteriorated, Neil wished he could do more for his son and Louise. ‘I miss the ability to give (and receive to a certain extent) a hug,’ he wrote on his blog. ‘I think I used to be good at it too. All I can do now is raise my eyebrow or give a reassuring wink. Believe me that this does not have the same effect.’
Neil and Louise began to have conversations about the end and about life for Louise and Oscar without him. ‘Towards the end he sent me to Scotland, where my family are, to buy a house,’ Louise said. ‘He needed to know that I would have my own place. He was a father and he wanted the best for his child. He couldn’t say to me, “I want you to find someone else,” but he did say, “I know you will find someone else.” That was the only way he could do it.’
Time, they both knew, was running out. Louise had bought a clock that projected the time on to Neil’s bedroom ceiling; ‘I imagine it is my own personal countdown,’ Neil wrote. His line in the sand was speech: if he was no longer able to communicate, life would not be worth living. ‘As soon as my speech becomes unintelligible,’ he wrote in one blog post, ‘I will accept the offer of the hospice. This visit will be for the purposes of switching off the ventilator.’
On February 24 2009 Neil dictated his final blog post to Louise, a scene that is shown in I Am Breathing. In a dimly lit room Louise listens as Neil, his voice muffled, whispers, ‘The reason I have chosen to go to the hospice tomorrow is to draw the curtains over what has been a devastating, degrading year and a half.’ Quietly sobbing, she notes his words with one hand while tenderly stroking his hair with the other.
Christmas Day 2008
Neil Platt died the following day. He was cremated wearing a T-shirt emblazoned with the face of the action star Chuck Norris. The song he had requested to be played during the cremation was Bon Jovi’s Wanted Dead or Alive.
‘The most disappointing thing was that I had really hoped he would get to the point where he wanted to go – but he never got there,’ Louise told me. ‘He never wanted to die. He went kicking and screaming.’
Four years on from his death Louise has moved to Scotland. Oscar is now five, and while he does not remember Neil, he knows all about him. ‘He still gets a kiss from Daddy every night,’ Louise said. She is remarried, to Robin, a doctor. ‘The word “Daddy” is reserved for Neil, but Oscar calls Robin “Dad”,’ she said. ‘I could not deny him being able to call someone dad at that young age.’
Life, of course, goes on, and it’s clear that however unimaginably difficult things have been, Louise has not been broken. ‘I was determined not to be destroyed by this,’ she said. ‘And I learnt that from Neil.’
Oscar is too young to see the documentary about his father, but Louise hopes that many others will watch it – and that it inspires essential research into MND. ‘I am absolutely convinced that my remaining anger and disappointment will never dissipate,’ Neil wrote towards the end. ‘Nor would I want it to. Because the remaining jealousy and anger are now providing the fuel for the fire as we fight to find a cure for this bastard of a disease.’
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