I got together with them again on Tuesday in Bethesda, this time in an unmasking of a different sort: We chatted about Tony’s life as a Parkinson’s disease patient. Tony and Jonna had been discreet about his struggles, including when we first met in his early stages of the disease, but they decided to talk publicly about it for the first time in front of 400 people at an international symposium for the Focused Ultrasound Foundation, an organization helping develop a new treatment for the debilitating disease.
The Mendezes want to use Tony’s fame — a concept he accepts reluctantly — to help jump-start new treatments.
“If we can fill a room, to get a bunch of people to listen, whether it’s about ‘Argo,’ whether it’s about ‘this is how I deal with Parkinson’s’ … then this is just his latest operation,” Jonna said.
The ramping up of Tony’s struggles coincided with the ramping up of his “Argo” fame. They tried to hide his condition as much as possible. “He really had trouble accepting that diagnosis,” Jonna said. With invitations for speaking events around the world, Tony and Jonna told me they went back into spy mode, trying to conceal how ill Tony was becoming. I saw hints when I brought them to the White House Correspondents Dinner as guests of this newspaper and then later at an art show at their home, when my wife and I purchased one of Tony’s paintings. We worried about him.
But Tony kept going, hopping on planes for trips around the world, getting by, Jonna said, on sheer determination, just as he did as a CIA officer. Jonna appeared with him on stage, jumping in when she saw him struggling, completing his thoughts, taking eyes away from him as he folded into the disease. They aren’t even sure Affleck knew. “I think he just thought that was Tony’s demeanor,” Jonna said. Taciturn. Removed. Not a lot of smiles. “But Tony was never taciturn before Parkinson’s,” she said.
Earlier this year, with the disease making painting and other daily tasks a struggle, Tony said: “We got to a spot in the disease where it’s not gonna be much fun living.” He was crashing every two hours, freezing up, relying on increasing doses of medicine to get by. “So out of desperation you go back to your physician and go, ‘What else you got?'”
He recently underwent Deep Brain Stimulation: an electrode was surgically implanted in his brain to block electronic signals, preventing tremors and other symptoms. The results, so far, have been encouraging. He can walk better, his energy is up, and I noticed his sharp sense of humor during our chat and in talking before. But Tony and Jonna are gadget geeks, just like they were in their old careers in subterfuge.
“If the device didn’t exist when we needed it,” she said, “we would invent it.” And Focused Ultrasound excites them. It’s a noninvasive way of directing “a focused beam of acoustic energy through the patient’s scalp,” destroying targeted tissue to improve symptoms. Clinical trials are underway.
Tony and Jonna never wanted to be famous. Before “Argo,” they loved their lives as artists, working at their home studio alongside Tony’s son Toby, a renowned sculptor. With the “Argo” hype subsiding — Affleck moved on to “Gone Girl” and then “Batman” — Tony and Jonna are preparing for another art show next month. They are working on a new book together. And though they have told me a few times in the last couple of years that they thought their 15 minutes were up, I don’t agree. Their stories are too good, their daily lives as artists too intertwined with their old spy days.
Back in 2012, we had great time talking about this. Tony told me about using painting as his cover. “You can start talking about art and put the guy to sleep very quickly,” he said. “If he wants me to do something on the spot, I can do that, too.” Jonna talked about her photography: “I did photography at the CIA. Very different photography. Have you ever been in the Spy Museum? Some of my cameras are in there.”
Now they have a new story to tell, about fighting — and hopefully beating, as they did so many times in their pasts — a cagey adversary. I would not bet against Tony and Jonna Mendez.