At the very end, Stacy Title was precisely where she wanted to be: in bed with her beloved husband, Jonathan Penner; their children, Ava and Cooper; and the dachshund they named Tootsie because she resembled Dustin Hoffman.
“There was no pain, no distress. It was as simple as that,” Jonathan wrote in a post to friends and family that he titled “The update I’ve been dreading.” He’d written nearly 80 such updates in the more than three years since Stacy, a movie director, was diagnosed with amyotrophic lateral sclerosis, or ALS, often ending his missives with one word: “Peace.” Earlier this week, on January 11, Stacy finally rested in peace, dying at the age of 56.
In May 2019, I had the privilege of writing about Stacy and Jonathan’s quest to finance what would have been her final directorial effort, a script called Walking Time Bomb. The piece was in part a bracing look at how Hollywood treats women directors. (Despite an Oscar nomination early in her 25-year career, she’d only been given the chance to direct four feature films.) But thanks to the access that Stacy and Jonathan gave me, welcoming me into their home, the piece was also an intimate portrait of a marriage — a marriage being tested by something most of us can barely imagine.
Even then, 21 months ago, Stacy was unable to move all but a few of her muscles. Her mind was sharp, and she still felt the full range of emotions, but her physical body was losing ground day by day. Stacy communicated then by moving her eyes, but her eye muscles were starting to fail. Stacy’s existence, like that of the other 12,000 or so Americans who suffer from ALS, was isolating and painful and scary. And that was before the world was stricken by a terrifying pandemic — one that was particularly dangerous for people like Stacy who relied on a ventilator.
It was typical of Stacy — whose strength Jonathan liked to compare to that of an ox, or a bear, or Borax soap (“Stronger than dirt,” he’d say) — that, despite her vulnerability, she did not get COVID-19. (That was certainly saying something, since at one point at the end of 2020, her entire household had it.) And it was typical of Jonathan — an actor and screenwriter and former three-time contestant on the reality-TV competition Survivor — that he spent the last months of her life striving to give her whatever happiness remained possible while also trying to pace himself.
Back in May 2019, right after my story about the couple appeared, they renewed their wedding vows after 28 years of marriage. One hundred and fifty of their friends and family gathered outdoors under the HOLLYWOOD sign to witness the event (You can watch it here). Stacy relied on her Tobii Dynavox speech-generating machine to speak for her that day, everyone in attendance cried, and at the end, the crowd posed for a group photo, yelling, “Fuck ALS!” instead of “Cheese!” Then everyone tromped down the hill to their house and had a big party.
Too quickly, though, Stacy’s hopes of directing one last film began to diminish. In July 2019, Jonathan reported that something had shifted. Stacy’s eyes were not behaving. The Tobii Dynavox could no longer read her subtle movements, and the binary code the family used to walk Stacy through the alphabet to spell out words — a clear movement of her eyes meant yes, while no movement meant no — was becoming more difficult for everyone.
Still, Stacy kept on. Over the coming months, she would lose all movement in her face, her shoulders would slump, her head would hang. But she kept on.
There were bright spots. During Survivor’s 40th season, competitor Yul Kwon (who’d won season 13, in the Cook Islands, while competing against Jonathan) dedicated his game and his earnings to Stacy and to ALS research. Jonathan, meanwhile, collaborated with their son Cooper’s girlfriend, Skye Volmar, to sell “Fuck ALS” T-shirts and other merchandise. The two Penner kids, now adults, had moved home, and the whole family organized disco birthday parties and anniversary parties and outings to Disney Hall. And there were always movies — Francis Ford Coppola’s Peggy Sue Got Married, some Bollywood flicks, Radha Blank’s The Forty-Year-Old Version, and the classic All About Eve. Cooper had read these lines from Margaret Atwood’s poem “Habitation” at their vow-renewal ceremony: “Marriage is not / a house or even a tent / it is before that, and colder: / the edge of the forest, the edge of the desert / the unpainted stairs / at the back where we squat / outside, eating popcorn.” More and more, Stacy and Jonathan were living those lines.
One morning last February, Jonathan crawled into the “wonderbed” that gently rocked Stacy at night to prevent bedsores, and they snuggled for a while. Stacy was wearing a rubber mask to block out the light and seal in moisture for her eyes, which by this point were open all night long. Husband and wife fell back asleep. Later, though, Stacy moved her eyes in a way that meant I have something to say. Jonathan recalled, “Our communication is best at this point of the day; her eyes have it harder later, when they’re tired from use and slowed by the morphine and oxycodone she takes for the pain. But now we start to spell. It takes ten or 15 minutes, but she spells, and I quote, ‘I am surprised that I am so similar.’” He translated: “She has not changed much, she means; she is still she.”
And she was. COVID protocols took their toll on her even more than the rest of us. Stacy missed being touched by her friends, although many still came to visit in a distanced way, outside in the open air. Then, in the fall of 2020, as fires ravaged so much of California, smoke hung heavily, making going outside impossible. Stacy could no longer blink at this point, and her eyes were always dry. Jonathan sent an appeal, then, to all their friends. For their 29th wedding anniversary, could people send videos of themselves?
“I would like to ask if she could hear from you,” he wrote. “Maybe how beautiful and brave she is. Maybe just how she used to drive you crazy but you forgive her. Maybe how you wish her peace. Maybe you even tell her what you want to tell her before you can’t tell her anything anymore.”
Their friends rallied. But soon Jonathan sadly reported that as Stacy and her family watched the video tributes, she’d had what seemed like a seizure. And now, he said, she was afraid to watch anymore.
Stacy and Jonathan took one final vacation for their anniversary. Stacy had suggested Paris, her favorite city, but Jonathan couldn’t find a way. Instead, they made a reservation at Shutters on the Beach, a deluxe hotel near the Santa Monica pier, less than 20 miles from their house. Worried about money, Jonathan chose a “partial view” room, and the hotel agreed to move one of the two queen-size beds out to make space for Stacy’s wonderbed. It took four days to pack all the equipment Stacy needed: the trach tubes and heating pads and oxygen compressors and ventilators, the eye drops and nebulizers and extension cords. “A huge pile of Frankensteinian shit,” Jonathan said.
When they arrived, they learned that the hotel had upgraded them to an Ocean View (and offered Jonathan an extra room across the hall, free of charge, where he could sleep). The weekend was perfect. Jonathan rolled Stacy’s wheelchair down the pier. He helped her get in the swimming pool, and when she wanted a margarita, he put some salt and a few tequila-fueled drops on her tongue.
In December, Jonathan reported that Stacy was still “stable and going strong,” even after, as he put it, “COVID Came to Our House.” With every adult in the family but Stacy testing positive, a doctor recommended that she go to the hospital. Her family was torn. Jonathan wrote about the two options they faced: “The ICU … [which] might give her more of a chance, but would certainly be a lonely, scary, and possibly fatal trip anyway” or “Keep her home … accepting that while it might hasten her death, she would at least be comfortable and surrounded by love.”
Ultimately, they decided to keep Stacy at home. She had made it clear that was where she wanted to die. Nurses stepped in to care for her while Jonathan and the kids kept their distance, in quarantine. Sometimes Jonathan bellowed the books he was reading down the corridor to keep his wife company. Stacy was tested numerous times. She was always negative.
As the New Year approached, Stacy participated in a Zoom reunion. At her Long Island high school, she’d been voted Most Popular in 1982, and 30 of her classmates got on the call. But the truth was, she was losing her sight. More than movies, in her final weeks, she preferred to be read to. They’d finished Elmore Leonard’s Glitz together and were beginning The Brothers Karamazov.
Jonathan, meanwhile, found himself rereading Hamlet. “Tell me if this sounds familiar,” he wrote to their friends. “Our hero, used to studying and reading and living up in his head, gets tragic news and finds himself stumbling around in a rotten state of grief.” Noting that Shakespeare himself lived through a huge pandemic but never wrote about it, Jonathan asked, once more, for friends to reach out. “If you can promise to keep your mitts off Stacy, a visit would be wonderful,” he wrote. “She just needs, like we all do, more contact in this crazy time.”
On Wednesday, Jonathan wrote me an email, saying in the end, after three decades together, he was grateful that Stacy had “spared me having to make the agonizing decision of turning off her machine, something I did truly dread and always assumed I’d have to make. She didn’t just let go. She let me go.”
In the past year, so many people — too many — have died alone, without their families around them. So many have struggled with the heartache of sudden loss. In that context, it is possible to see Stacy and her family, though cursed by a terrible disease, as lucky. Over the past three difficult years, they had the time, however wrenching, to tell each other how they felt. They could prepare. That gift caused them pain, no doubt. But, as Jonathan told friends in his final update before Stacy died, it also taught them something profound. No matter how hard things get, he wrote, “I’ve learned there is no question — To Be is better than Not To Be. Ask my wife.”
