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. Photo: Alex Welsh
Title at home in Los Angeles in April. Photo: Alex Welsh
Title at home in Los Angeles in April. Photo: Alex Welsh

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.”

To which Stacy responded, “Towel, please.” And Jonathan gently placed another rolled-up washcloth in her mouth and vowed never to mention Towel again.

  1. This picture of Jonathan and Stacy was taken in October 2017, two months before her diagnosis.

    Photo: Alex Welsh

  2. While Jonathan naps, the couple’s son, Cooper, puts drops in Stacy’s eyes so she can more easily close them.

    Photo: Alex Welsh

  3. Stacy uses a speech-generating device called a Tobii Dynavox to communicate, typing each letter by directing her eyes at computer keys.

    Photo: Alex Welsh

  4. A nurse changes Stacy’s tracheotomy tube.

    Photo: Alex Welsh

  5. Caregivers and nurses massage her muscles throughout the day.

    Photo: Alex Welsh

  6. Stacy with her daughter, Ava.

    Photo: Alex Welsh

  7. Stacy and Jonathan meet with a line producer to hammer out a production budget for Walking Time Bomb.

    Photo: Alex Welsh

  8. A walk to the HOLLYWOOD sign, where Stacy and Jonathan plan to renew their wedding vows this month.

    Photo: Alex Welsh

  9. Late one evening, Jonathan realizes he has run out of saline solution for his wife’s eyes; he eventually decides to make some himself.

    Photo: Alex Welsh

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Hollywood is no place for quitters. Stacy Title has always known that, long before she and Jonathan moved from New York to Los Angeles to break into the movie business, long before the short film they made was nominated for an Oscar, long before they bought their Mediterranean-style hillside house perched under the HOLLYWOOD sign.

To endure the drumbeat of rejection that so many here dance to, this duo — who’ve written four feature films and countless movie and TV scripts together — have placed a premium on perseverance. Jonathan, who is an actor as well as a writer, has at times taken a literal approach; he competed on three seasons of Survivor. But in a certain sense, Stacy has been the more tenacious of the two. Being a woman in a predominantly male profession, she’s had to remain almost preternaturally optimistic to keep doing — or trying to do — what she loves. Now she is determined to direct one last movie before she dies.

Back in January 2017, the future looked bright. A horror film Stacy directed called The Bye Bye Man had grossed more than three times its budget, and that success, combined with the ripple effects of #MeToo, was opening doors that had seemed sealed shut for most of her career. She was hired to direct an episode of Hulu’s mutants-invade-a-high-school series, Freakish; the producers of the Netflix hit Stranger Things had called Stacy’s reps to check on her availability; and a few of the scripts she and Jonathan had been developing finally appeared to be gaining traction.

But in August 2017, the couple were out to dinner with friends near Beverly Hills when it suddenly seemed that one of Stacy’s feet wasn’t her own. To keep from stumbling, she had to take off her heels and walk barefoot. ALS is an illness that is identified only after other possibilities have been ruled out, so for several months she didn’t know what was wrong. Whatever her malady, it was aggressive. By October, she’d started slurring her words. In December, she flew to Illinois to meet with showrunners for the Chicago-based programs of Law & Order’s Dick Wolf, but by March 2018, she could barely climb a flight of stairs. In August, Stacy lost her ability to talk. A year after she first stumbled, she was having such trouble breathing that she opted for tracheotomy surgery.

Typically, people in the entertainment business who get sick keep it under wraps. In a town that values youth and vitality above almost all else, illness equals weakness equals unemployability. Everyone knows a story about someone who hid his or her diagnosis. For example, when Allison Shearmur, a producer of The Hunger Games and the Bourne franchise, died last year of lung cancer at 54, Hollywood was stunned. She’d kept her condition secret from all but her family and closest associates for fear, her husband said later, of being “defined by her disease.”

As for Stacy, not only did she go public with her diagnosis of Lou Gehrig’s disease, she talked matter-of-factly about what it meant. “My motor neurons have begun to die,” she posted on Twitter last June, “stripping me of the ability to walk and speak clearly. It’s viscerally painful. It’s terrifying … But I am writing this because I want … to move you to make changes and begin to hire people who look and sound like me.

“My time is precious,” she wrote. “I want to work.”

She wasn’t being hypothetical. She had a well-honed script called Walking Time Bomb and a cadre of proven actors who’d agreed to appear, most of whom she’d worked with before: Jason Alexander, Cary Elwes, Bob Odenkirk, and Courtney B. Vance. She’d recruited a co-director to help execute her vision (and to spell her if she became incapacitated during production). The cinematographer from The Bye Bye Man and a top-shelf casting director had signed on, and the co-writer of the horror blockbuster Saw had agreed to executive-produce.

But Stacy’s principal collaborator — in sickness and in health — has always been her cinema nerd of a soul mate, Jonathan, and on Walking Time Bomb, she plans to rely on him more than ever. The couple intend to raise $4.8 million for a 27-day shoot.

“Though she’s dying, she’s not dead yet,” Jonathan wrote on Lotsa Helping Hands. He had no doubt that she could “direct the hell out of” Walking Time Bomb. “It is not just a dream she is holding on to, or a security blanket like Towel. It’s a genuine possibility she is determined to realize. The fact of it makes her stronger.”

On the set of The Bye Bye Man in 2015. Photo: Brian Douglas

When they met in New York City in 1989, it was because of a movie: a Susan Sarandon–James Spader drama called White Palace. Jonathan and Jason Alexander, who was about to become famous playing Seinfeld’s George Costanza, were among the film’s supporting cast and had become friends. One night, Alexander invited Jonathan to go out to dinner with his wife, Daena Title, and her first cousin, a vivacious magazine writer named Stacy. “Jonathan met Stacy at that dinner, and that was it,” Alexander recalls.

At 27, Jonathan — blue-eyed and Tom Cruise handsome — had booked a few film and TV roles and was eager to keep up the momentum. Stacy, 25, had set her sights on filmmaking. The daughter of a successful commercial producer, she’d watched her father work with directors such as Ridley and Tony Scott and Michael Cimino; she wanted to do what they did. Jonathan and Stacy spent hours comparing favorite movies. Stacy loved Hitchcock’s Rebecca. Jonathan thought no one could do better than Wim Wenders’s The American Friend. They argued about Peter Greenaway’s The Cook, the Thief, His Wife & Her Lover; Stacy found it pretentious. Soon they were inseparable.

They became writing partners and in 1990 moved to Los Angeles. A year later, they came back east to get married on the rooftop of Silvercup Studios in Queens. The ceremony was at sunset, which gave an orange luster to the stretch of Manhattan skyline made familiar by more than one Woody Allen film. Stacy, in a couture gown, carried a heart-shaped bouquet of red roses bordered by something sweet-smelling and white.

More roses, I ask? We are in their living room, with its mosaic fireplace tiles and views of the canyons below, and Stacy is typing again with her eyes. G, she musters, and I can see over her shoulder that when she aims her gaze, the chosen key briefly blinks red. She sits in her motorized wheelchair, her legs stretched out motionless before her. Her hands, nails perfectly painted a teal blue, lie still in her lap. A, she types. R. D. I take a guess: gardenias? She looks at me gratefully and nods.

Stacy was once curvy. Now that she is nourished through a feeding tube inserted into her abdomen, she has lost 45 pounds. Her face is so drawn that her big brown eyes seem even bigger. But her dark hair remains lustrous — she’s always been proud of her hair — and she exudes self-confidence. Stacy is a Long Island girl, and you used to be able to hear that in her staccato delivery. Now, speaking through her Tobii, she has a British accent, chosen from a menu of options. Jonathan — whose own accent is pure New York City native — calls it her “new Rachel Weisz computer voice.”

“I am a walking time bomb,” she spends 45 seconds typing and then, finally, says.

On first read, Walking Time Bomb seems a bleak choice for her final film. It’s about the sole survivor of a mass shooting at a coffee shop who, instead of acting traumatized, continues to live his life as before — and is vilified for it. “It’s a story about how people grieve differently and how judgmental people are,” said its screenwriter, Allen Keller.

Stacy was healthy when she first read Keller’s script and was immediately smitten. She thought the film could be a biting social commentary, à la Thank You for Smoking. The pace of mass shootings in America made the subject matter timely. After she was diagnosed with ALS, the script’s focus on the “right” response to a tragedy made the story personal. Some friends questioned her decision to keep working. A few even thought she was being selfish. Why put her family through that? So when the main character in Walking Time Bomb asks in exasperation, “What is the response you want from me?” Stacy felt a deep shock of recognition.

Yes, she acknowledges, life is very different now because of ALS. The house has had to be retrofitted to accommodate Stacy’s wheelchair. She ascends the steps outside the sky-blue front door via a new ramp. Inside, chairlifts have been installed in the two winding stairways to get her from floor to floor. There is an electric device that lowers her into the bathtub, and she sleeps in what Jonathan and their two college-age kids, Cooper and Ava, call her “Superbed,” a contraption with two Hoyer lifts that hoist a netlike sling to help move her, like a dolphin in an aquarium. In addition to Jonathan, she relies on round-the-clock nursing. Because she can’t move her arms, if you put her down without taking precautions, she’ll sit on her hands.

But for Stacy, her diagnosis isn’t her, and she resists being reduced to it. “We’ve had the hard conversations,” says Dannie Festa, the couple’s manager. “I thought, Is trying to direct a movie really what you want? Don’t you want to just rest? Or be with your family? And Stacy has said to me, ‘Why should I stop doing what I love? What am I going to do? Just sit in this chair and die?’ She’s like, ‘Just get me back behind that camera one more time.’ ”

The most recent “Inclusion in the Director’s Chair” report, released in January by researchers at the University of Southern California, included this sober fact: 83 percent of female directors have made just one movie in 11 years. (And the impact of the #MeToo movement has yet to be felt; in 2018, only 3.6 percent of the 100 top-grossing films were directed by women.)

Stacy beat those odds. After she and Jonathan got an Academy Award nomination for their 1993 short, Down on the Waterfront, which starred Jonathan, Alexander, and Ed Asner, she directed four low-budget features. Still, opportunities were hard-won, and there were many setbacks. While her debut full-length film — a comedy about political correctness called The Last Supper — starred Cameron Diaz and Bill Paxton, among others, and played for a year in Paris, it barely registered in the U.S. Stacy was all set to direct Sylvester Stallone and Kevin Bacon in a film adaptation of the Stephen King short story “Dolan’s Cadillac.” Then it fell apart. Similarly, talks broke down about a movie based on the TV series The Mod Squad (a $50 million version would later be directed by a man). Let the Devil Wear Black, a thriller she and Jonathan wrote, got made and had performances by Mary-Louise Parker, Philip Baker Hall, and Jacqueline Bisset, but its distributor went belly-up. The film was never released in theaters.

She even has a Weinstein in her past. In 2014, Bob and Harvey announced that they’d be acquiring worldwide rights to a film called The Bye Bye Man with Stacy directing. She and Jonathan had spent three years developing the movie (he adapted the script from a short story), and a few days after the Weinstein Company made its plans known, the couple met Bob for the first time. They’d barely begun talking when Bob turned to Stacy. “I know this will make you mad,” he told her, “but I prefer to talk to your husband.”

For the rest of the meeting, Bob addressed all his comments to Jonathan. Finally, Bob said that before they could proceed, Stacy had to “try out” by shooting a sizzle reel of two scenes. “I don’t think you know what you don’t know,” he pronounced. It was a major diss — Stacy was firmly attached as the director — but she agreed. On the day of the shoot, Bob sent a colleague to observe and called him at one point to check in. Both Jonathan and Stacy remember that when the executive hung up, he repeated what the younger Weinstein had just told him: “Don’t help her.” Bob seemed to want Stacy to fail.

She didn’t. Nonetheless, Stacy soon heard that Bob was still looking for a more seasoned director to replace her. Through his attorney, Bob said the “script showed a lot of merit but he had concerns about Ms. Title’s relative lack of experience directing, and the Weinstein Company ultimately passed on the project.” Luckily, the producer who’d been on the movie since the beginning was able to shift it to more supportive partners, and in 2015, Stacy shot The Bye Bye Man in a month, with a $7 million budget. To date, it’s grossed $27 million worldwide.

Recently, Jonathan tallied up the days his wife has spent behind the camera during her 25-year career. The number is 99. “That’s four days a year,” he says, shaking his head. “That’s fucking criminal.”

“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,” Stacy wrote in a memo to recruit crew members for her final film. “And yet here we are.”

To better understand what his wife is going through, Jonathan suggests playing a little game. Tonight, when you go to bed, lie down and then try not to adjust your body, not one iota. Don’t fluff the pillow or tug on the blankets or scooch closer to your partner. Try to just lie there. “If you can last 30 seconds, I’ll buy you a Reuben,” he says. Then try to imagine that not only are you unable to move, but you are also in pain. Until they found the right sleeping pills, this was Stacy’s fate, every single night. Sometimes it still is.

One day as we sit together, Stacy says she wants to read me something she’s written. “If you kill me, it will feel good,” she begins in her refined robot voice. “Don’t worry, this is not an essay about suicide. It refers to the moment a few months ago when I struggled to sleep.” Her muscles were seizing, she says. She lay next to her husband in agony, and while she could still speak then, all that was coming out of her mouth were commands. “Rub my back. My feet. My toes. My head. My feet again,” she tells me, recounting the incident. “We were on my neck — for probably, if I’m honest, the third time — when I made the ignominious request: Rub harder. His hands, no doubt fatigued, mustered the strength and tightened firmly around my neck. My first reaction was ‘Ahh.’ Then I thought, Penner is mad. Seething. A small part of him could kill me.”

Stacy calls Jonathan by his last name, Penner. That or “Movie Yoda,” a reference to his command of arcane cinematic trivia. Jonathan calls Stacy his “warrior bride” or summons movie-related nicknames to amuse her: Gedde Watanabe (an actor in John Hughes’s Sixteen Candles), Goofy Gozer (the villain in Ghostbusters), or simply Harpo. Of the five Marx Brothers, he notes, Harpo is the one who doesn’t talk.

“I’m Groucho,” Jonathan will say. The label has resonance for him. Writing on Lotsa Helping Hands, he ashamedly described one of their nighttime ordeals. “I massage her aching arm. I pull her waist back so she’s more comfortably on her side. I adjust the pillows. We go back to sleep. She wakes me up again an hour or two later. I’m rougher. I’m crabby. I’m just exhausted and, shall we say, not fully present. I adjust her again.” Being awakened twice, he has discovered, is his limit. In those darkest days before they figured that out, “she’d wake me a third time. Or a fourth. Or, on the day when she called me evil, a fifth and sixth. I was crazy from sleeplessness. She said, ‘When you get like that, I want to die.’ I told her in the morning, ‘I was glad there weren’t guns in the house because we both wouldn’t be here anymore.’ ”

The alternative — sleeping apart — has been excruciating too. Last July, when the couple won a fight with their insurance company and were finally able to rent Stacy her Superbed, Jonathan was shocked to discover there was no room for him in it. “In that moment, I felt what our big brass king has meant to us,” he said. “ALS is now spreading through our lives like floodwater.”

At times these days, their relationship is more like parent and child than husband and wife. As Stacy noted in a rare post of her own on Lotsa Helping Hands, “the bulk of the caregiving falls to Penner. He transfers me all day long. From car to chair to pool. When he does, there’s this beautiful infantilized moment. I lift my arms above my head and think, Up, and these strong, beautiful arms wrap around me. He kisses me light on the lips, and lifts me. Up, the start of desire. Up, a superlative feeling. Who doesn’t remember in their bones that childhood moment, whispering, ‘Up,’ and then being held tight, safe, small and filled with well-being. That’s me all day.”

The couple haven’t given up sex, however, not at all. “It’s fantastic, that’s the truth,” Jonathan says as he and I drink coffee at their kitchen table one morning. While Stacy is almost completely paralyzed, she hasn’t lost any feeling. “That’s one of the things that does not go away for an ALS patient,” Jonathan says. “We love to fool around, and giving her that kind of pleasure is a great thing. Stacy still initiates some of these encounters, just like she used to. She’ll say, ‘Let’s have some sex! What’s going on here?’ And I’ll say, ‘Okay, you know, there are other people in the room. Maybe we need to be alone.’ ” With their constant nursing help, alone time is, indeed, scarce. But they find it.

“I don’t want to get too private,” Stacy tells me, her eyes twinkling, “but I no longer have a gag reflex.” During sex, she forgets about her body’s limitations, and Jonathan teases her that she also forgets about Towel — reason enough to get busy. “I’m not comfortable not being her husband,” he says. “I’ve not yet allowed that to be taken from me.”

“My legs are killing,” Stacy says. It is another afternoon in the Penner-Title living room, and they’re meeting for the first time with a line producer, Carl Beyer. The goal is to hammer out a budget for Walking Time Bomb to send to potential financiers. Jonathan bends his wife’s knees, gently putting her feet together to rest her laptop on her ankles, where she can see it. As Beyer goes line item by line item, Jonathan defers to his wife. “Let’s ask the boss,” he says.

Beyer ticks off his questions. Storyboard artist? There is a pause while Stacy types. “I will need one,” she finally says, sounding regal. Steadicam? Almost imperceptibly, she nods yes. Crane? Dolly? Another nod. Handheld camera? She can’t shake her head, but she manages a slight turn. That’s a no. Stacy also decides not to hire a stuntperson, which saves at least $30,000.

As Stacy and Beyer go back and forth, Jonathan absentmindedly begins singing. This is a habit of his. He’ll belt out a lyric from, say, Guys and Dolls: “Sue me, sue me / What can you do me?” Today he’s channeling Patsy Cline. “Crazy …” he sings softly.

“Towel, please,” Stacy says, and Jonathan quickly obliges.

Were Stacy healthy, they think the movie could be shot in 21 days. They’ve added six days to the schedule to accommodate the daily regimens that keep her alive. Her mornings begin with 20 minutes in a percussive vest, which shakes loose the secretions that gather in her chest overnight. Jonathan or a nurse will then suction her mouth and lungs, a process that has to be repeated every hour. Albuterol mist is delivered via a nebulizer. To guard against infection, a tube within her trachea must be changed out. Her limbs, stiff from sleep, are rotated and massaged; there’s a trip to the bathroom and then a meal of Liquid Hope, an organic mixture of rice protein, vegetables, and vitamins that is poured into her G-tube twice a day, along with fresh apple and prune juices that Jonathan makes.

This may all sound prohibitive, but Stacy isn’t the first director to be severely ill during a production. On his last movie, The Dead, John Huston, the 15-time Oscar-nominated director, was for the most part confined to a wheelchair, inhaling oxygen. More recently, in 2014, after Richard Glatzer was diagnosed with ALS, he co-wrote and co-directed Still Alice — the movie about Alzheimer’s starring Julianne Moore — with his husband, Wash Westmoreland. Glatzer never missed a day of filming despite being unable to talk (he communicated on set by typing with one finger). Moore won the Academy Award for Best Actress for the role, and 16 days later Glatzer died.

Westmoreland tells me that any skepticism about whether Stacy can be effective as a director stems from a misunderstanding of the job. Directing doesn’t have to mean barking orders, he says, or wearing jodhpurs and cracking a riding whip “like Erich von Stroheim.” What’s essential is that a director have vision, he says. Sure, Stacy will need to be surrounded by a supportive crew and a bighearted cast, Westmoreland adds, “but that’s just part of making any movie — having the right team in place.”

When I reach out to the actors who’ve committed to Walking Time Bomb, each seems honored simply to have been asked. Alexander, who jokes that he is a longtime member of the “Stacy and Jonathan Repertory Company,” enlisted without reading the script. “The ALS has nothing to do with it,” he says. “When Stacy goes, ‘Do you want to be part of something I’m doing?’ the history is I go, ‘Yeah.’ ” Bob Odenkirk says he loved the script and could imagine playing one of several roles. “More than anything else, I’d like to be there to watch her do it,” he says. “If anybody could, she can.”

For years, friends joked that Stacy should write a book. It would be called Ask Stacy because so many people relied on her to tell them what to do in almost any situation. “She’s a total know-it-all,” says Elizabeth Stephen, who attended Brown with Stacy. “Not in an obnoxious way, but she really always knew best.” So when Stacy insisted she’d survive until doctors found a cure for ALS, no one argued.

There seemed reason to hope, especially during a few blessed months at the end of 2018 when a Russian healer entered their lives. He charged an exorbitant daily rate to massage her weakened limbs, plus he had to be put up in a hotel nearby. But for a while, the healer seemed to be working miracles. Stacy went off all her pain meds. She had more mobility. It seemed her symptoms were reversing — until suddenly the disease came surging back. Her nights became harrowing once again, and medications were essential. When family members who were helping pay for the healer’s hotel said they couldn’t continue, Jonathan made the difficult decision to quit him.

“We worked the economics out, and it was unsustainable,” he says. Right now, Stacy’s out-of-pocket medical costs are more than $14,000 a month, and while one or the other of them occasionally gets residuals for past projects, friends cover many of their day-to-day expenses and make sure someone brings them dinner via a schedule on Lotsa Helping Hands.
The couple considered selling their house and rehiring the healer. “But ultimately, I guess, it’s putting one’s head in front of one’s heart,” Jonathan says. “She has declined since he left. But I was not prepared to do that to myself or my kids or even to her.” Part of the issue is that it’s impossible to know how much money they’ll need in the future because there’s no way to know how long Stacy will survive. Besides, where would they live if they sold the house? “All the money I gave to him I’m going to need for caregivers,” he says, “assuming this goes on for a long time.”

We are in what was once their bedroom — you can still see the marks on the wooden floorboards where their king-size bed used to be. Now the sunny space is filled with Stacy’s equipment: the respirator, a massage chair, and her Superbed. Stacy sits propped up as Jonathan leans out the window, adjusting a bird feeder so she can see it better.

“Can you bend my legs?” Stacy asks. He closes the window and does what she asks.

The next day, they have a call with a noted ALS doctor in Boston. Stacy’s disease has progressed relatively quickly, and the couple want to discuss how she’ll die and what kinds of choices they might need to make. “I’ll be really blunt,” Jonathan says as he massages his wife’s calves. “There’s only a couple of things that kill you with ALS. Either she’s going to get some kind of systemic infection, which we’ll beat back and beat back until we can’t beat it back anymore. Or there’s the possibility that her heart or diaphragm just gives out. And then there’s the possibility that her eyes will give out and she won’t be able to communicate.”

Stacy stares intently at her Tobii screen, and a minute later, as Jonathan continues rubbing her body, she says, “That is the scariest.”

“Most people don’t live that long,” Jonathan says. “Most people don’t get the trache and the vent. Had she not gotten it, she would have died last year.”

Before Stacy becomes unable to move her eyes, Jonathan needs to know her wishes, but even if she gives him an answer now, he’s worried — what if his wife changes her mind? “ ‘Don’t kill me! I didn’t mean it. Please keep me alive!’ — we won’t know,” Jonathan says, starting to cry. “It’s the ultimate fucking horror story. You just don’t know how long you have to make these plans.”

“Wet towel, please,” Stacy says. Jonathan uses a swab to wipe her mouth.

“My head hurts.”

Jonathan tries to guess what she wants. “Do you want some water? Some Tylenol? Something stronger? Do you want us to shut up and leave you alone?” There is a pause while Stacy types. Then, in an even torrent of words, she says, “Rub the top of my head. Backslash. I don’t want to live locked in.”

Jonathan laughs then. “That’s my girl. The ridiculous and the sublime in one sentence. Okay, that was a very clear statement. You don’t want to live locked in.”

We wait while Stacy types. “I’m clear on that,” she says.

How much time should any of us spend talking about dying? Jonathan wrestles with this. Shouldn’t he be urging his wife to stay in the moment, to simply enjoy what’s left of her life? Cooper and Ava Penner, 23 and 20, are invested in helping their mother do this and their father, too. They’ve both moved home — Cooper, who has graduated from Brown, is getting ready to take the MCATS, on his way, he thinks, to becoming a neurologist. Ava — whose name her mother must misspell as “Aeyva” to make the Tobii pronounce it right — is on a leave of absence from Boston University and, until recently, was working as an assistant at a production company.

The kids help with Towel, and with a thousand other things, but it is their presence that helps the most. Recently, they threw their dad a dinner party, cooking for his closest friends. “Hi, Mama!” Ava, who is named for the actress Ava Gardner, calls out brightly when she returns from work each day. When the living room is full of visiting friends, it is Cooper who bends in to ask, “Want me to stick by your side, Mom?”

Every day, Jonathan bundles Stacy up, plugs in a portable ventilator, and rolls her wheelchair out the front door and down the ramp into the street. Motoring up a winding path, they close in on their destination: a sandy knoll where you can glimpse the HOLLYWOOD sign. It’s kind of incredible how easily they can walk there. Most days, they encounter group after group of tourists, bickering with each other in Japanese and in German, trying to find the best place to park or to pose for selfies with the 45-foot-tall capital letters.

Always, during this walk, Jonathan urges Stacy to take in the blue sky, the purple thistles and yellow mustard plants along the path. Always, he puts their dog, a dachshund named Tootsie because she looks so much like Dustin Hoffman, on Stacy’s lap, right where his wife wants her. “Look, honey,” he’ll say. “The birds are chirping, and the light couldn’t be more beautiful.” This month, they plan to come to this spot to renew their wedding vows.

“It’s very clear,” Jonathan sings softly. He doesn’t finish the Gershwin line.

One day, we’re returning from a trip to the HOLLYWOOD sign when Cooper joins us. Jonathan is midway through a story about a woman he’s heard about who lost the ability to shut her eyes. In desperation, this poor woman had her eyes sewn shut, he says. Cooper looks disturbed and quickly schools his father in the more common protocol: the surgical implantation of gold weights to restore normal eyelid function. The young man bends over his mother. “Is this upsetting you, Mom?” he asks softly, shooting his father a frustrated glance. Jonathan is unapologetic. “I’m not going to keep stories from her,” he says. “Especially scary stories.”

In April, the couple and their children toured the place Stacy wants to be buried: Hollywood Forever Cemetery. Stacy chose it because they show movies there on summer nights (and she’ll have cinematic royalty for neighbors: directors Cecil B. DeMille and John Huston and actors such as Douglas Fairbanks, Mickey Rooney, Fay Wray, and Judy Garland). Jonathan reported that Stacy wept as they rolled her wheelchair around, but he “found the place oddly comforting. Freeing, even. We were taking action. Living in reality.” On the way home, though, when they passed a favorite L.A. haunt — Roscoe’s House of Chicken and Waffles — he cried too because, he wrote, “I saw my someday; twirling a drumstick and drinking wine in the graveyard. Spilling my guts out to Stacy, who I know will be listening.”

In her mind’s eye, Stacy sees precisely what she wants for Walking Time Bomb. “I am going for a lush, densely colored look!” she emails me. “Primes! And the fantasy sequences I will hang back wide and zoom, [to make them] distinct! The actors will all play for reality.” The movie — with budget, actors, and A-list crew attached — is out to several financiers. The second it’s green-lit, Stacy, two years into a disease with a life expectancy of two to five years, wants to begin shooting. So she and Jonathan are pondering how they’ll have to adjust their lives to accommodate filming. Depending on locations, they’ve talked about moving Stacy’s Superbed closer to set to reduce travel time. Maybe in the mornings they’ll do her session with the percussive vest in the car on the way to the day’s shoot. They’ll feed her there. They expect she’ll work ten-hour days.

In the meantime, the couple go to the movies. Thanks to a van equipped with a wheelchair ramp — a gift from friends — they’ll head out to a revival house called the New Beverly Cinema to see a Burt Reynolds double feature, say. (Stacy had never seen Smokey and the Bandit, which Jonathan considered a crime; he sent show times to friends via Lotsa Helping Hands that day, urging, “Please join us!”)

Recently, too, Stacy spent a few hours back in the director’s chair. The ALS Association’s Wisconsin chapter had arranged to shoot public-service announcements in L.A. starring Courtney B. Vance, whose mother died of ALS in 2017. Through a series of lucky coincidences, they heard that Stacy and Vance had worked together before, and she was recruited to direct (and appear in) a few PSAs of her own.

When the crew arrived at Stacy and Jonathan’s for the shoot, Dave Hanneken, an executive creative director at the advertising agency Hoffman York in Milwaukee, recalls being struck by Stacy’s self-assurance and her proficiency with Tobii. “I was amazed at how quickly she could share feedback,” he says, admitting that he hadn’t been sure she’d be able to do the job. But Stacy had prepared a detailed shot list, and once she (or rather, her British alter ego) read it aloud — “Medium on Courtney for all the dialogue. Tight coverage of me” — everyone relaxed.

I’ve watched Stacy’s PSA’s many times now. Vance is terrific in them, but my gaze lingers on her. Stacy is decked out in cowboy boots, with a bright-green-and-blue scarf around her neck. Her hair is shining, and so are her eyes. She plainly relishes being in charge.

I’ve become sort of obsessed with Jonathan’s appearance on Survivor: Cook Islands — his first season on the show, in 2006. My favorite episode is the 13th, when, after 31 days of boiled octopus and huddling in tents with sweaty strangers, the contestants get a surprise: family day. “Say hello,” Survivor host Jeff Probst suddenly tells Jonathan, “to your wife, Stacy.”

They’ve been apart for a month, but now Stacy is running toward her husband, who looks scruffy and thin in a dirty T-shirt and shorts. He opens his mouth, speechless. “Hi, baby,” Stacy says as Jonathan pulls her close. She looks so robust and he so exhaustedly happy to see her. Next, the two compete against other Survivor pairs in a contest that involves filling buckets with water; the winners get a good meal and a night together. The tricky part is that Jonathan is blindfolded, and Stacy has to guide him with her voice. In the face of maddening obstacles, they must find a way to communicate. “Is that good?” Jonathan will scream after blindly flinging water toward a bucket Stacy is holding. “Nah, that was very diffuse!” Stacy yells back. “Try it again!”

With Stacy directing, Jonathan gets more and more accurate, and victory looks likely. Then, at the last moment, another team overtakes them. “Damn it,” Stacy says, flinging her bucket onto the sand. She’s headed back to L.A., while her husband will be staying on the island in the middle of the Pacific. Before Stacy can be whisked away, Jonathan strides across the beach toward her. “Jonathan, not even asking permission. He’s taking a good-bye,” Probst scolds, as Jonathan kisses his wife, one last time.

*This article appears in the May 13, 2019, issue of New York Magazine. Subscribe Now!

Stacy Title Is Racing Against ALS to Make Her Final Movie