Director Stricken With ALS Vows to Finish Her Final Movie: "Doing What I Love Will Be Part of My Legacy"

Stacy Title - On set of The Bye Bye Man in 2015 - Publicity-H 2018
Courtesy of Brian Douglas

Stacy Title and her husband, 'Survivor' alum Jonathan Penner, are mounting a new movie as the 'Bye Bye Man' director faces a devastating battle: "I won't quit now."

In August, Stacy Title lost her ability to speak. Her voice will not be coming back. The 53-year-old filmmaker, who directed STX's 2017 horror film The Bye Bye Man, is in the deep stages of ALS, the incurable disease that impairs motor functions, one by one, sometimes fast, sometimes slowly, until the victim is immobilized, then dies.

But Title, who in September underwent a tracheotomy to help her breathe and can move only via motorized chair, is doing everything she can to make herself heard as she and her husband, actor, writer and ex-Survivor contestant Jonathan Penner, mount what will be her final movie.

"Why should I stop doing what I love?" the mother of two says in a statement read by Penner, her "translator," as she used an alphabet sheet to spell out her words shortly before the surgery. "I have always believed and always taught my kids they can do whatever they want. I've tried to live that life."

The duo, along with producer Dannie Festa, an executive producer on DreamWorks Animation's Trolls movies, are cobbling together financing for a low-budget dark comedy, Walking Time Bomb, with Jason Alexander, Cary Elwes and Bob Odenkirk attached. "In normal circumstances, I'd ask how anyone in her condition can hope to proceed," says Alexander. "But Stacy is so headstrong and her attitude so positive, I think she might be the person to get this done."

The project is moving forward through Title's sheer determination, even as she lies in recovery at L.A.'s Barlow Respiratory Hospital and Penner arranges permanent home care. She'll soon be using Tobii, a retina machine that will allow her to communicate via an electronic voice speaker.

Title first suspected something was amiss when, a year ago, she tripped several times while walking on a sidewalk. Then there was the slight but recurring trembling of her speech. She feared ALS, though her doctors, even a neurologist, told her for months it must be something else. Her diagnosis came in December.

Growing up in New York, the daughter of a commercials producer who worked with such directors as Ridley and Tony Scott and Michael Cimino, Title knew early on she wanted to be a filmmaker. She was nominated for an Academy Award for her short Down on the Waterfront in 1994 and a year later made her feature debut with The Last Supper, starring Cameron Diaz in one of her first roles. But success and steady projects eluded Title — until late 2017. On top of Bye Bye Man, she directed an episode of Hulu's Freakish and was being considered for an installment of Stranger Things. "To have survived in this business to the point where #MeToo is finally changing things and now to be hit with this is literally injury to insult," she says via email. "It sucks. And yet, here we are. I have never quit trying, and I won't quit now."

Walking Time Bomb tells the story of the survivor of a coffee-shop massacre who ends up losing everything because the tragedy doesn't impact his life as profoundly as others think it should. The script, written by Allen Keller, tackles the erosion of privacy and how cavalierly people use this openness to destroy lives. (The project was at one point set up at Netflix with Elizabeth Banks' Brownstone Productions and Keegan-Michael Key attached.)

Title knows what she's up against: She's a person who can't talk and is not mobile in a job that demands communication. She plans to rehearse intensely. She is asking friends and former co-workers to pitch in. She'll use her husband as a mouthpiece.

The couple celebrated their 27th anniversary Sept. 14, but at her respiratory facility, flowers are not allowed. So Penner created a grand display, aided by contributions from friends, in the courtyard outside Title's room. "They are playful, still, with each other," says Odenkirk, "something that is wonderful to see."

Some friends who aren't in the business, Title says, tell her she should take it easy. "I don't want to die, but I'm going to eventually," she says. "But until then I want to live and direct — doing what I love will be part of my legacy. I don't want to sit shut away in my chair. I think this will be a beautiful, fun, challenging process for all of us, and I am happy. I want to stay happy."

This story first appeared in the Sept. 20 issue of The Hollywood Reporter magazine. To receive the magazine, click here to subscribe.