Irish filmmaker with ALS shows power of choosing life

The next phase of killing is en route to the West Coast.

Oregon, which was the first state to legalize euthanasia in the country via its “Death with Dignity Act” in 1997, now is looking to take a new step with S.B. 494, a bill that could be used to withhold food and water from patients suffering from dementia and mental illness. These are men and women who are not necessarily at the point of death, but rather who are considered “incompetent” and no longer have the ability to communicate their wishes (see story on Page 4). It’s a dangerous next step down the slippery slope misleadingly promoted as “death with dignity.”

Increasingly, it seems individuals in the world in which we live seem to be looking for more reasons to die than to remain alive. Perhaps that’s why I was so inspired by the story of Simon Fitzmaurice, an Irish filmmaker behind the new film “My Name is Emily.”

Fitzmaurice’s personal story is told in the documentary, “It’s Not Yet Dark,” which debuted earlier this year, and which is based on a 2015 memoir by the same name. In 2008, Fitzmaurice, who was married with three children and a promising career, was diagnosed with motor neuron disease, better known as ALS or Lou Gehrig’s disease. Doctors gave the 33-year-old three or four years to live. Some advocated for him to consider not relying on artificial means to continue his life. Fitzmaurice, though, was having none of it. He didn’t want to placidly wait out life or to welcome an early death. He wanted to live.

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Eight years later, Fitzmaurice is no longer able to move his limbs. He cannot speak, swallow or breathe without assistance from a machine. But, boy, is he living. Not only did he pen the screenplay for “My Name is Emily,” but he directed it, too, sharing his thoughts via a computer that can track his eye movements to spell out words and phrases. Working with a supportive cast and crew, he developed a director’s shorthand — winking when he thought a take was satisfactory and it was time to move on. When all he had left of himself to communicate with were his eyes, that’s what he used. He told The New York Times: “I remember thinking, ‘I must do this to show my children to never give up.’” I would say he succeeded.

In an interview with CBS, Fitzmaurice said he wanted to direct “My Name is Emily” in order “to spend this precious time I have doing something that fulfills me at the deepest level, that echoes in my soul.

“A fire has been lit inside me — seriously, an energy I didn’t know I had. And it has not gone out,” he said. “It has been life-changing.”

Life-changing for him, and dramatically inspirational for the rest of us. In a culture that promotes death as the palatable choice for people with illness or disabilities, Fitzmaurice’s story of perseverance and determination to live is a reminder of just how powerful it can be to instead choose life.

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