New York Magazine

Walking Time Bomb

The director Stacy Title is paralyzed and cannot speak. But she is determined to make one final movie.
Title at home in Los Angeles in April.

IN MARCH, Stacy Title and her husband, Jonathan Penner, had a horrible fight. The quarrel itself—that it happened—wasn’t the problem, as they both recalled it. After 29 years together, they’d become good at arguing and regarded their ability to disagree as one reason they’d stayed happily married for so long. No, the horrible part was what they were fighting about.

Stacy has ALS, or amyotrophic lateral sclerosis. Her mind remains sharp, she still feels the full range of sensations, but she is unable to move all but a few muscles. She cannot speak, spit, or swallow, and yet—despite painful Botox injections into her salivary glands to reduce their output—she still makes saliva. This means that without near-constant attention from the able-bodied people around her, some of Stacy’s spit begins to slide down the back of her throat and pool on top of her tracheotomy tube, while the rest drools out her mouth.

“The only thing that makes her feel comfortable and safe are these washcloths we collectively call ‘Towel,’ ” Jonathan explained to friends and family on a site called Lotsa Helping Hands. The search for the softest, fluffiest Towel took months, as did learning how to place it, rolled up, in her mouth like a horse bit. But now, because she was losing control of her jaw muscles, even when Towel was carefully positioned, it often fell out within minutes or even seconds.

“Towel, please,” Stacy implored, using a speech-generating device called a Tobii Dynavox that lets her type words with her eyes. “Towel, please.” Lately, according to Jonathan, it seemed Towel had begun to take over their lives.

“Whoever is with her winds up spending a lot of time managing the infernal thing,” he said. “Every guest proposes a different solution, like, ‘How about one of those roach-clip chain-y things you see in the dentist’s office?’ And I’ve begged her to consider at least five other options on top of that. Anything so her precious time and energy and spirit are not spent obsessing over the fucking Towel.”

Finally, Jonathan initiated a frank talk about Towel. He asked Stacy to imagine that if this were about anything else—cigarettes, say, or alcohol, or sex—and she were saying, “Smokes, please. Booze, please. Sex, please,” every ten seconds. Then he’d be correct in telling her, “Let’s cool it with the hooch and the Nat Shermans and the Vanessa del Rio routine. You’ve got a bad habit, and it’s driving you, me, and all of us insane.”

But Stacy was not an undisciplined woman or an addict. She was a 55-year-old movie director with a devastating neurodegenerative disease, and she just wanted her damned Towel. So she told Jonathan to fuck off, typing each letter—F-U-C-K—by aiming her retinas at a smart keyboard. She told her husband he was being ungenerous and even mean. There was so little now that soothed her or gave her agency; why not offer up Towel whenever she asked for it?

Jonathan knew she was right. And yet, he told me, “I’m just not willing to become a slave to Towel.” There were times, he admitted, that it seemed as if “I could be a chimp or a robot, as long as I get the Towel back in there fast enough. I just want a Stacy who’s not so subsumed by sickness and anxiety that she can’t even consider what her husband is saying. Should I push her hard, as I’ve always done? Or let it go?” That question framed the reality: The Towel debate was “just the fractal tip of the fractal thing, which is that she’s dying and there’s nothing I can do about it and I’m trying like hell to keep her here. Fighting, joking, fucking, laughing. Making our house run. Making our kids thrive. Making me feel like the luckiest guy in the world.” Jonathan told Stacy all this. He said, “Please don’t get lost in the pain. Please still be here. Be you.”

On the set of

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