Navigating the world with face blindness

In 2013, I was four months into my job at The Washington Post when we had a going-away party for Sara, who was moving to Philadelphia.

Everyone gathered around while our boss talked about her contribution to the paper. When I got to work the next day, I was surprised to see Sara standing beside a copy machine. “Aren’t you supposed to be in Philadelphia?” 

I joked. Sara peered at me through plastic-rimmed glasses and said, “I’m Holley.”

“Oh, right!” I said, hoping that Holley assumed I’d merely gotten their names mixed up. In reality, I was convinced that they were the same person. A few years later, I was trailing behind my husband, Steve, in a supermarket when he grabbed a jar of own-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 back, his eyes wide with fear and surprise. It was an expression unlike anything I’d seen cross my husband’s face—because, I realised, this man was definitely not my husband. 

Two years ago, 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 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 realise was that this diagnosis would make me question the very fabric of my identity. 

I’m at my appointment at the Boston Veterans Administration hospital with neuroscientist Joseph DeGutis, who is leading a face-blindness study. 

I’ve spent the past day and a half taking tests to determine whether I will get into a training programme for face-blind people. The tests had been impossible. One began with a grid of six faces that I was supposed 
to memorise and then pick out the ones I’d seen before from lineups of nearly identical faces.

“So am I face blind?”, I ask DeGutis. I try to memorise his face—handsome, if a little wolfish. “We think you have mild to moderate prosopagnosia,” he says.

Normal folks have a near photographic memory for faces, DeGutis says. This is 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. 

“Even before you’re born, you have this kind of proclivity toward faces,” DeGutis says. This is also why people see faces in electrical outlets, on the front of cars—basically everywhere two dots appear over a line. We tune this basic facial-recognition software by scrutinising the faces around us, DeGutis adds.

Face-blind people—who make up about two per cent of the population—seem to be born with faulty FFAs. In DeGutis’s experience, prosopagnosiacs tend to be smarter than average, perhaps because they often have lonely childhoods with few friends but lots of time for reading and solitary pursuits.

As for cures, nothing so far has been very promising, including stimulating the FFA with a weak electrical current. One treatment has shown promise: a training programme DeGutis created that teaches face-blind folks to make quick judgments about the spacing of facial features. He tested the computer-based programme on a face-blind friend of a friend and was stunned when it worked. “I was like, ‘Oh my God!’” DeGutis recalls. “‘We might have actually helped someone.’”

Being face blind means living in a world of strangers. The fact that some are acquaintances and even friends is a source of constant anxiety. One face-blind man I read about kept his eyes downcast to avoid chance encounters with people he knew but couldn’t recognise. 

This earned him a reputation for being aloof, which made it harder for him to make friends. 

There’s only one failproof way for face-blind people to avoid social embarrassment, and that is to stay home. The most tragic cases dig themselves into a trench of loneliness that’s difficult, if not verging on impossible, to escape.

This was the path I was going down until my dad gave me some crucial advice. I was 19, home from my first university term, and we’d just finished food shopping.
“Well, that was rude,” he said when we got into his car. “What?” I asked.

“Your buddy Susan Zartman,” he said. “You just walked right past her.”
A girl with short brown hair had waved to me in the store. “Oh, that was Susan?” I asked. She had been a friend in middle school, but when I stopped seeing her regularly, she faded from my mind. 

There’s some evidence that faces act as the brain’s file folder for all the information you gather about people—when and where and how you met, their favourite bands, the name of their last boyfriend. Because my brain is unable to make a good file folder, these details often get lost. 

Of course, I didn’t know any of this at age 19. How, I asked my dad, do you have a conversation with someone you don’t recognise?
“Everyone just wants to talk about themselves,” he said. “Just ask a lot of questions.”

This tip transformed my life at university. 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 friends of mine. 

A few people did stand out from the crowd. My best friend, Melissa, had long blue hair; Thalia and Annette were freakishly tall. As for everyone else, I was often at a loss, but that didn’t hamper my blossoming social life. When I was elected house president of my student hall, I took pictures of all 80 women I lived with and put their faces and names on a bulletin board, claiming that it was for everyone’s benefit. 

Today, as in university, I have many acquaintances but just a handful of close friends—all of whom are distinctive-looking. My friend Miriam is a pixie with long purple hair; Sieren is tall and thin; Steve is a 350-pound giant of a man.

A lot of my friends don’t believe I’m face blind. “But you can recognise 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 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 you say something that clues me in to who you are.

A few weeks after I return to Washington, DeGutis’s assistant, Alice Lee, invites me to take part in a 30-session computer-based training programme designed to help face-blind people improve their facial-recognition skills.

Each session begins with a grid of ten variations on the same face, with some features shifted by tiny increments. A zigzag line separates them: In group one, the faces have eyes and mouths spaced farther apart; in group two, the faces have notably more compact features.

I study the faces for a few minutes and then press a button to begin. The grid disappears, and is replaced by a slide show of individual faces that I must identify as belonging to group one or two by pressing “1” or “2” on my keyboard. I know from reading DeGutis’s earlier work that this is supposed to teach me to focus on information-rich areas of the face and make fine distinctions on the fly.

The first round is a disaster. I categorise the faces about as accurately as a blind person would. For the second round, I try using my fingernails to measure the distances between features. It doesn’t work—time often runs out and the screen flashes red. 

By the third round, the faces are starting to look distinctive, but the computer is varying their size. Apparently, I’m supposed to memorise the relative distance between features—something that normal people do without even trying. At the end of the hour, I am nearly crying in frustration.

For weeks I flail and nearly quit. Then, around week ten, I discover a winning strategy. Instead of trying to assess each face as a whole, I divide it into halves, top and bottom. Then I decide which of three positions (high, middle or low) describes the eyebrows, and which of four positions (highest, middle-high, middle-low or lowest) describes the mouth. I also memorise which pairs of characteristics belong to which group.

My scores are soaring, but my real-world facial-recognition skills remain dismal. One day, I apparently sat next to my friend Dani at a coffee shop and didn’t recognise her. “You looked right at me,” she later tells me.

I return to Boston for more tests and scans, and DeGutis calls me at work with the results. “Your ability to learn new faces is among the worst of our prosopagnosiacs,” he says. My brain scan had shown that my fusiform face area is thicker than the average one.

Sadie getting her facial-recognition skills tested 

Children start out with dense FFAs, but as the brain determines which neurons are useful and which ones are just getting in the way, it thins them out. This so-called neural pruning seems to have stopped short in my FFA. 

“You have the fusiform face area of a 12-year-old,” DeGutis says, adding that my facial recognition ability is like a “below-average macaque.” I’m in shock.

There is good news: after 30 hours of training, my facial-recognition skills have improved significantly.

“If you’d been this good when you came in, you wouldn’t have gotten into the study,” DeGutis says. But the follow-up tests showed that my face perception was still terrible—I wasn’t able to match a face with the exact same face at a slightly different angle.

After saying goodbye to DeGutis, I flee the office in tears. 

“What’s wrong?”, Steve asks that night, and I tell him. It’s not the monkey brain news that’s getting me down, I say. The bigger issue is that I’ve always thought I was in charge of my life—that I was a writer and a reporter because I had decided on that career path. But maybe I’d been pushed in this direction by my faulty brain, which made for a lonely childhood that I got through by reading a lot.

Then, as a young adult, my prosopagnosia made me an expert at talking to strangers. For weeks afterward, I am a mess. This whole investigation has reopened a mystery from my past: why didn’t I have any friends when I was a kid? My old verdict—that I was weird and kids are mean—was suddenly in question.

I write a Facebook note to my former classmates, telling them I’ve been diagnosed as face blind, and asking if that had anything to do with my unpopularity.
“You had friends! I was your friend!” one classmate replies. She shares a memory of making fudge at my house.

Other people recall that I was standoffish. “You always seemed to just be content doing your own thing,” one woman writes. Another claims that she’d tried to be friends with me, but that I never seemed to warm up to her. “I thought you just didn’t really like me,” she says.

How many friendships have I been missing out on because of my face blindness? I will never know. Luckily  for me, not knowing is sort of my own special skill.

In July 2019, I celebrated my 40th birthday with 60 or so friends, many of whom I wasn’t able to recognise. 

I was fine with that, and, presumably, they were, too. My hard-won gains in facial recognition have faded. 

I can do booster sessions to keep my skills sharp, but I’d rather spend that time doing something I enjoy, like looking at birds. I get such a thrill identifying them. 

From Washington Post (August 21, 2019), Copyright © 2019 by Washington Post

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