Living with face blindness
When your brain won’t let you recognize people, how do you navigate the world?
Last year, I was trailing behind my husband Steve in a grocery store when he grabbed a jar of store-brand peanut butter from a shelf. I plucked it out of our cart and examined the label.
“Since when do you buy generic?” I demanded.
Steve jumped away from me, his eyes wide with fear and surprise. It was an expression unlike anything I’d seen cross my husband’s face before – because, I belatedly realized, this man was not my husband. I dropped the peanut butter jar and sprinted off – leaving this poor stranger utterly perplexed. When I found Steve in the frozenfood aisle, I told him what had happened.
“It’s because you have the same coat,” I explained. “Good thing you have different cars, or I might have gone home with him.”
“You have no idea what my car looks like,” Steve said.
He would know. Steve has learned that I will stand on the curb squinting into every car that passes by if he doesn’t honk or wave. I’d long assumed that only car fanatics could identify cars on sight, but, by then, I was beginning to understand that my visual world is a lot different from everyone else’s. After all, I had been quicker to notice the wrong label on a jar of peanut butter than the wrong face on my husband. That doesn’t happen to normal people. And instead of smoothing my mistake into a funny story, for the first time I saw it as evidence that something might be wrong with my brain.
This spring, I found out that I have a rare neurological disorder known as prosopagnosia, or face blindness. This discovery sent me on a journey that I thought, at first, would be a lark. After all, I’m a happy, successful adult – who cares if my brain isn’t quite like everyone else’s? What I didn’t realize was that this diagnosis would make me question all the stories I’ve ever told about myself, the very fabric of my identity. It felt like I’d bought a ticket for a Ferris wheel and ended up being launched into space.
I first learned about face blindness in 2010, when I read an article by Oliver Sacks in the New Yorker.
Like me, Sacks had long assumed that his difficulties remembering people were the result of general absent-mindedness. It wasn’t until halfway through his life that Sacks – a neurologist! – realized that he had a neurological disorder. I read with astonishment as he described moments from his life that could have been lifted from mine.
We’ve both, for instance, accidentally snubbed our respective therapists and were later forced to unpack the incidents at length.
“It’s not just you,” I said to Dr. Jadin during a session. “Sometimes I don’t recognize my own mother.” That wasn’t exactly true, but I did mistake my aunt for my mom last Thanksgiving. I’m told the two don’t look very much alike, but they became identical to me when my aunt dyed her hair blond.
Despite these similarities, I was hesitant to diagnose myself with Sacks’s disorder.
For one thing, it seemed presumptuous to think that I had the same condition as this world-famous scientist and science writer. Also, his experience didn’t quite line up with mine.
As Sacks writes: “I think that a significant part of what is variously called my ‘shyness,’ my ‘reclusiveness,’ my ‘social ineptitude,’ my ‘eccentricity,’ even my ‘Asperger’s syndrome,’ is a consequence and a misinterpretation of my difficulty recognizing faces.”
This didn’t sound like me at all. I am not the least bit shy – in fact, I talk to strangers every day. Sometimes it feels like all I do is talk to strangers.
I tossed that New Yorker into my recycling bin, but the topic of face blindness lingered. On occasion, I even connected it to myself, saying, “Sorry, I’m a little face blind,” when I couldn’t remember someone, but I meant it as a joke, a comic exaggeration.
One day I was thinking about the grocery store incident and I started Googling prosopagnosia. Then I began searching medical databases and emailing scientists, asking them to send me the full text of their studies if I couldn’t find them free online.
Printouts piled up on my desk until I had more than I could possibly hope to read. Why was there so much research on such a rare disorder?
I walk down the hall to my appointment with Joseph DeGutis, the lead researcher of the faceblindness study I have come to Boston to participate in. He is a neuroscientist with a joint appointment at Harvard Medical School and the Boston VA.
DeGutis, a young, athletic man, stands up from his chair and thanks me for coming. I know I’m going to have to find him later, when we meet up for my fMRI brain scan, so I try to memorize his face – handsome, if a little wolfish. “So am I face blind?” I ask. “We think you have mild to moderate prosopagnosia,” he says. DeGutis doesn’t want to elaborate because knowing too much about the experiment could taint my data. “We’ll tell you everything you could ever want to know when you’re done.”
Prosopagnosiacs can be tough to recruit for studies, he adds. They are so good at working around their disability that they trick everyone into thinking that they are normal, including themselves. And when they do recognize that something is amiss, it’s hard to convince anyone else of the fact. It’s so difficult to describe how you see the world because you don’t have anything to compare it to. Plus, early tests of facial recognition were defeated by prosopagnosiacs who used hair and ears and facial expressions to remember who was who.
The tests I’d taken that morning truly were impossible. I particularly struggled with one that began with a grid of six faces. Somehow, I was supposed to memorize them and then pick out the ones I’d seen before from lineups of nearly identical mugs. “There’s no way anyone can do that,” I assert.
Actually, the Cambridge Face Memory Test is pretty easy for most people because normal folks have a near photographic memory for faces, DeGutis says. The brain doesn’t bother to do that for any other kind of object. Give people a grid of six rocks, and there’s no way they can pick them out of a lineup. But faces tend to make an indelible imprint in our minds.
This is possible because of an olive-size lump of brain located just above and behind each of your ears – the fusiform face area. The FFA seems to come programmed with information about facial configuration – two eyes above a nose above a mouth. Researchers shining lights onto the bellies of pregnant women have found that third-trimester fetuses orient to this pattern, as do babies who are just a few hours old, DeGutis explains.
“Even before you’re born, you have this kind of proclivity toward faces,” he says. This is also why people see faces in electrical outlets, on the front of cars, on burned toast – basically everywhere two dots appear over a line.
Although we are born with basic facial-recognition software, we have to tune it by scrutinizing the faces around us, DeGutis adds. This is why people who are mostly exposed to faces from their own racial group sometimes think (but hopefully don’t say) that so many of the people from another group look alike. It’s also why people who are born blind but gain the ability to see as adults often end up face blind.
A few people become face blind when they have an FFA-damaging stroke, but most face-blind people simply seem to be born with faulty FFAs.
“There’s a genetic component,” DeGutis says. “Is anyone in your family face blind?”
“Not as far as I know,” I say. “But I am stereo blind.”
My eyes are so badly misaligned that my brain can’t combine the two images into one mental picture.
Because I’m always seeing out of one eye or the other, my world is a little flat. 3-D movies are lost on me, and I’ve never once caught a flyball.
“That could definitely be related,” DeGutis says. It’s not the whole story, though – six to 12 per cent of people are stereo blind, but only about two per cent are face blind, and the two don’t always go together.
An interesting thing about people who are born face blind – the so-called developmental prosopagnosiacs – is that they are otherwise normal. In DeGutis’ experience, prosopagnosiacs tend to be smarter than average, perhaps because they often have lonely childhoods with lots of time for reading, thinking and other solitary pursuits.
Being face blind means living in a world full of strangers. The fact that some of these people are acquaintances and even friends is no solace. It’s actually a source of constant anxiety.
One face-blind man I read about walked around with his eyes downcast to avoid chance encounters with people he knew but couldn’t recognize. This earned him a reputation for being aloof, which made it even harder for him to make friends.
There’s some evidence that faces act as the brain’s file folder for all the other information you gather about people – when and where and how you met; their favorite bands; the name of their last boyfriend; and why they broke up.
Because my brain is unable to make a good file folder, these details often get lost at the bottom of the drawer.
Some face-blind people can hitch biographical details to people’s voices, but for me, face blindness means being a little people blind, too.
Of course, I didn’t know any of this at age 19.
All I knew was that people I didn’t know often greeted me, and I never stopped to chat for fear that they’d figure out my ignorance and be offended.
How, I asked my dad, do you have a conversation with someone you don’t recognize?
“Everyone just wants to talk about themselves,” he said. “Just ask a lot of questions, and they’ll think you’re the most fascinating person in the world.”
I took this tip back to college, and it transformed my life.
In one semester, I went from being lonely all the time to having too many friends to fit into my dorm room.
All it took was faking that I knew the people who appeared to know me.
When I was walking to class, if someone seemed to be looking my way, I smiled. If they smiled, I stopped to chat.
Before long, the whole campus was brimming with close, personal friends of mine.
A lot of my friends don’t believe me when I tell them I’m face blind. “But you can recognize me, can’t you?” they say.
The answer is: sometimes. If you’re in the right context, in good lighting and wearing your usual glasses, my brain will probably put the clues together and come up with a name.
If you’ve popped up somewhere unexpected or gotten a haircut, there’s a good chance I won’t.
What I will see, instead, is a person who seems to know me, and I will greet you warmly and hope that, at some point, you say something that clues me in to who you are.
I have spent my whole life pretending that I know what’s going on and trusting that I will eventually figure it out. This comfort with uncertainty is perhaps prosopagnosia’s greatest gift – and most vexing characteristic.
In July, I celebrated my 40th birthday with 60 or so of my closest friends, many of whom I wasn’t able to recognize on sight.
I was fine with that, and, presumably, they were, too.
Most of them have no idea that I am face blind; they probably just think that I am absent-minded.
Or maybe I’ve been so good at faking it that it has never occurred to them that they all look pretty much the same to me.