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 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.
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.
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.”
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.
I am currently helping friends with their severely disabled child. The child needs round-the-clock supervision; this is especially challenging...