Devoted Dad with ALS Creates Inspiring Documentary for His Son: 'He Is Always in My Thoughts and in My Heart'
Patrick O'Brien has a special gift for his son this Father's Day
Patrick O’Brien has a gift for his 8-year-old son, Sean, this Father’s Day – one that took him 10 years to create.
In 2005, when doctors told the popular New York City DJ that he would live for only two-to-five years after he was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, O’Brien, then 31, decided to make a movie documenting his journey, determined to make his remaining years count.
A decade later, his film, Transfatty Lives (named after his donut-loving nickname), debuted on Netflix on June 15 after winning the audience award at the 2015 Tribeca Film Festival.
And more importantly, O’Brien, now 41, has defied his doctors’ odds and now hopes to watch his son grow up, using his eyes to communicate now that he has lost the use of his limbs and his voice.
“Luckily, being a father is something I have for the rest of my life,” O’Brien, who lives at an assisted living center in Chelsea, Mass., tells PEOPLE, using a Tobii Dynavox speech generating device to transcript his thoughts through his eye movements. “I made this film for my son. And I also see it as my duty to continue to express myself for those with ALS who never learned to do so in the first place.”
It was autumn 2004 when O’Brien, then working as a DJ, filmmaker and visual artist, developed an uncontrollable shaking in his legs, “like a skip on a dirty CD,” he tells PEOPLE.
Although doctors suspected that he had ALS, neurological testing didn’t reveal much at first. O’Brien took his video camera with him to his appointments and eventually caught the moment when he was told that he definitely had Lou Gehrig’s disease and would likely die in a few years.
“I always try to find the bright side,” says O’Brien, “even with a terminal diagnosis. I knew it was the beginning of a new adventure for me. It wasn’t a question of whether it was possible to make a movie documenting my journey – it was impossible not to. The only way I could have given up on the project is if I had given up on myself, which isn’t something that’s in me.”
With support from family members and friends, O’Brien chronicled everything from losing his ability to walk to the day he had a tracheotomy and received a ventilator in order to breathe. Along the way, he also filmed himself fighting depression, falling in love and having a son (the relationship with his girlfriend has since ended and she and Sean now live in Florida), and his struggle to communicate as he lost his voice.
After trying a variety of communication devices that were slow with numerous glitches, O’Brien learned about a device that would allow him to use his eyes to track a keyboard on his computer screen.
“It opened up my world,” he says. “This is how we completed the film. I would type notes about each clip and scene and my editors would make the changes. Now I can also surf the Internet, online shop, write memoirs for my son and make bad jokes on Facebook.”
Without the eye-activated technology, it would take him much longer to accomplish even the simplest tasks, such as sending emails or paying bills online, he says.
“Communication is one of the most important parts of living,” says O’Brien, “and this has opened up my world with its ease of access.”
“People like Patrick are an inspiration – showing that everyone, regardless of their verbal or physical abilities, should be able to find their ‘voice’ in this world,” Tara Rudnicki, president of Tobii Dynavox, North America, tells PEOPLE.
“For those with ALS, (speech generating) technology empowers them with the ability to communicate, engage with the world around them and do things that everyone – maybe even themselves – thought would no longer be possible,” she says.
With his documentary receiving praise from the public and critics, O’Brien is now considering ideas for his next project, and friends have set up a foundation – Friends of Patrick O’Brien – to help support him and his son.
“He (Sean) is always in my thoughts and in my heart,” O’Brien tells PEOPLE. “I see him when I can. I made the film so that he would have a way of learning about me – unfiltered and as I want him to know me. I may not be able to play Xbox with him or build a tree fort for him, but at least I can give him light in the darkness of a movie theater.”
“What I hope people will take away from my film is that the human spirit is infinite and life is to be cherished,” he adds. “Everyone is suffering in some way and everyone has their day-to-day struggles. Wake up – every moment is a miracle. Be compassionate and enjoy the ride.”