“It’s not that I don’t know everyone. The problem is I don’t know whom I know,” says Hodes, talking about the party he went to recently. “I was looking for the host and she causes me trouble,” he says. “She keeps changing her hairstyle.”
He glanced around the room for a while before the hostess found him. He got himself a drink and started talking to a photographer sitting next to him.
“Did you also go to CUNY?” Hodes asks.
“Yeah, yeah I did,” the man replied.
Hodes had struck gold. “Wait a minute, you teach there now don’t you?” he asked eagerly.
“You teach the photo class, you’re like an assistant? You taught my class,” Hodes said.
“We had many interactions and I ought to have known him, but thankfully he didn’t recognize me,” Hodes says later.
A recent CUNY journalism graduate, he’s become a prosopagnosia celebrity since appearing on 60 Minutes in August 2012.
Hodes doesn’t think it necessary to tell people about his disorder right away. “It would appear like I was self absorbed,” he says.
Now most of his classmates and professors are aware of his face blindness—a mixed blessing, since people started asking him jokingly, “Do you recognize me?”
Though he has lived with prosopagnosia since birth, Hodes wasn’t diagnosed until he was 19, when he was a student at Swarthmore College. His parents were going through a divorce, so he took advantage of the school’s free therapy. In addition to talking about his family, he told the counselor about his trouble recognizing people. “That’s when they told me that I may be suffering from the disorder,” he says.
He went home that night and read up on prosopagnosia. Bill Choisser who suffered from it for years, was sharing his experiences on a blog. “It was like every movie cliché happened,” Hodes recalls. “I was reading Bill’s work and crying because years of repressed experiences finally made sense.”
He signed up for testing in Boston at the Prosopagnosia Research Center. A functional MRI showed nothing wrong with his brain, yet he couldn’t recognize faces on tests. “I can recognize horses, houses or even guns, but when it comes to faces, nothing,” he says.
When he broke the news to his mother, she didn’t seem surprised; she had noticed the problem when he was a child.
“I was like, ‘Mom, what the hell? Why didn’t you ever point it out?’” he says. “I remember I was always confused as a kid because all of us on the soccer team had that same stupid buzz cut and wore that same uniform three times a week.”
Unlike Alperin, who thinks his prosopagnosia results from a fall, Hodes suffers from congenital prosopagnosia, which appears to run in families and probably results from a genetic mutation or deletion.
“My dad is in his 50s and when I told him about the disorder, we found out he suffers from prosopagnosia as well. A lifetime of experiences suddenly made sense. I can imaging how difficult it must have been for him, because he used be a labor organizer,” Hodes says.