Still breathing

The hum and hiccup of the ventilator forms a constant backdrop throughout “I Am Breathing,” a feature documentary on the last days in the life of Neil Platt, a Scotsman diagnosed with Motor Neuron Disease (MND). This is a variant of a whole range of disorders that includes ALS, more popularly known as “Lou Gehrig’s Disease.”

Science has determined what causes MND: neurons that transmit signals for voluntary movement from the brain to muscles somehow start failing, if not disappear completely. As a consequence, the person starts losing control over his or her movements, until toward the end the person can no longer walk, clench hands, reach out, swallow, or talk. And he or she needs the constant use of a ventilator to help with breathing.

But while we may know what brings on the onset of this rare disease, the ultimate cause, the reason the neurons start failing, is still a mystery. And while doctors and caregivers know of ways to manage the disease, there is still no known cure. On average, a person diagnosed with MND expects to survive for three to five years.

The truly “cruel” thing about the disease, though, as Neil himself says, is that it doesn’t entirely deaden sensations, including pain, so that if one feels an itch, one has to wait for someone else to scratch it or wait out the feeling.

In many ways, that is what Neil is doing in the film: waiting out his time with MND, while living among the folk he loves, sharing in their life but unable to fully participate. At the same time, he is preparing, as best as he can, for when he is no longer around. On top of these concerns is his year-old son Oscar, who will grow up not knowing his father. And so Neil prepares “artifacts” that Oscar can use to reference his father’s life: a “memory box,” a blog, audiovisual “letters” to his son, and the documentary.

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IT WAS the blog that led two filmmakers—Emma Davie and Morag McKinnon—to Neil and the family that had gathered around him: his wife Louise, his mother (Neil’s grandfather and father both died of MND), his son, siblings and friends who take turns in looking after him.

Within a year, at the age of 34, Neil “goes from being a healthy young father to becoming completely paralyzed from the neck down.” But even in his debilitated state, Neil loses little of his sense of humor, his defiance, his stubbornness, and his determination to control the trajectory of his life, including what he will leave behind.

Write the filmmakers: “Sometimes films just demand to be made, even if they are difficult. This was one of them.

“The film was prompted by Neil himself. He wanted to communicate about his experience with MND in the last months of his life. He already had an ever-increasing audience for a blog he was keeping and wanted to reach out further. This in itself was not reason to make the film. Who he became in these last months is what seemed to demand to be communicated.”

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“I AM Breathing” doesn’t try to canonize Neil, or even soften the harder edges of his character. He is shown bantering with friends and playing practical jokes on Louise.  He teases Oscar about his favorite toys, and watches Chuck Norris movies, in loving tribute to the “connection” he shares with the action star who he faintly resembles.

What the movie does is share Neil’s words and sentiments, in his blog and in the brief seconds he can address the camera directly. It also gives the audience a fleeting glimpse and feel of what it means to be Neil: to watch the seasons pass through a picture window, catch glimpses of Oscar at play in the yard, taste the mushy cereal that is both his and his young son’s diet, and measure his remaining time by the milestones Oscar accomplishes.

In his last interview published in The Guardian, Neil recounts: “When I lost the use of my legs, we had to get a hoist to help me stand. I was wheeled from room to room in this hoist and the same day we got it, Oscar pulled himself up on the bars of his playpen. When I first had to use a bottle to pee in, he started using his potty. When I got my wheelchair, he started using his walker.”

But neither is he spared the little annoyances that come with being human, and yet helpless as a baby. “The biggest frustration for me,” he tells the interviewer, “is that if there’s something that needs to be done, I can describe it so clearly but then people do something else. It’s infuriating. You can learn to accept that you can’t do things for yourself, but that doesn’t belie the fact that you know you could do them better.”

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Neil Platt passed away in 2009, and in one of his final statements, he wrote: “I am absolutely convinced that my remaining anger and disappointment will never dissipate. 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.”

“I Am Breathing” has been screened in 14 countries, with many more screenings scheduled last June 21, MND Global Awareness Day. In the Philippines, the feature documentary was first screened last July 6 at the U-View screening room of Fully Booked in BGC by an organization of young docu makers. The filmmakers charge a nominal amount to screen “I Am Breathing,” with half of the profits donated to the MND Association, and the other half invested in outreach work. For anyone interested in accessing the film and screening it, check out the site at https://www.iambreathingfilm.com/.