NEEDHAM, Mass. As Jim Vilbeck pulls out his wallet to pay the uninsured portion of his wife’s medical bill at the Gorham Hospice Home in this suburb of Boston, his face appears almost beatific, contrary to what one would expect. “If it were me instead of her who was taking the final steps in a long journey, I’m sure she’d do the same.”
“Don’t worry–I’ll nag him for you when you’re gone!”
Diane, Vilbeck’s wife of forty years, suffers from Pfeiffer-Scrolnick Disease, a debilitating ailment that slowly constricts a woman’s vocal chords to the point where speech becomes impossible. “It’s a long painful slide,” Vilbeck says. “It’s like she’s there but she’s not there anymore.”
The spouses of those who contract the disease find themselves in a curious sort of echo chamber; their wives are still a part of their lives, but something vitally important is missing. “Her nagging wasn’t just an important part of our relationship,” Vilbeck says wistfully, his voice barely audible over the whoosh of cars speeding past on the street outside. “It was our relationship.” Without Diane to hector him, Vilbeck felt lost, distrait he says. “I didn’t even know what ‘distrait’ meant until I looked it up,” he says, “but that’s sure how I felt.”
“It’s so peaceful here . . .”
But the couple had the foresight to sign “living wills” that spelled out what the two of them could do if the other ceased to be a fully-functioning partner. Diane’s made clear her wish that, if she lost the capacity to whine, Jim would be free to have a hen-pecked relationship with a complaining “surrogate” who would provide him with daily aggravation if she couldn’t.
“Am I irritating you yet? Good–let’s work with that.”
“What the hell took so long?” asks Gloria Sewanicki, Vilbeck’s surrogate nag as he gets in his late-model Toyota in the parking lot.
“I had to pay the bill, there’s always paperwork,” he replies.
“Why don’t you go on automatic debit–they take the money right out of your account each month, it’s easy,” Sewanicki.
“I don’t like people to have access to my bank information.”
“When are you going to join the 21st century? Don’t turn here, I want to go the back way,” Sewanicki snaps just as Vilbeck was about to exit onto Route 128, a highway that rings Boston but which is crowded with rush hour traffic now.
As his car slowly makes its way over local roads, stopping and starting through stoplights and congestion from shoppers, he starts to say “I told you so,” but bites his tongue–and tears well up in his eyes.
Did it hurt when you bit your tongue? this reporter asks with as much sympathy as journalistic ethics will permit.
“No, I was just thinking of Diane,” he begins, but Sewanicki interrupts him.
“For God’s sake pay attention!” she shouts, causing him to slam on the brakes. “You’re going to get me killed with your daydreaming!”