“The testing confirmed what I already knew: My prosopagnosia is ‘severe.'”
I always knew that recognizing people was not something I was particularly good at.
Growing up, I made sense of this the way I made sense of being good at spelling but not at soccer. I assumed that the experience of reorienting yourself after a play’s intermission, when the characters had changed costumes, was universal. I accepted that running into your teacher at the grocery store was a nightmare — not because it gave you a glimpse into their real life, but because it would take you a while to figure out where you knew them from outside the context of the classroom. I thought it was weird that my friends thought it was weird that I printed out and labeled photos of David Schwimmer, Matthew Perry and Matt LeBlanc as references so I could follow along as I watched the first season of “Friends.”
It wasn’t until ninth grade, when a psychiatrist asked me if I’d ever heard the word “prosopagnosia,” that I finally started putting the pieces together.
More than 10 million people in the U.S. may experience difficulty with facial recognition. It’s possible many of them don’t even realize it. Like many things, facial recognition exists on a spectrum. But because nobody can be inside another person’s head, it can be hard to know exactly where on that spectrum one falls — and whether they fall within the range of “normal.”
Prosopagnosia, or face blindness, is generally categorized into two types: acquired prosopagnosia (AP), which occurs due to traumatic brain injury, and developmental prosopagnosia (DP), which is based in genetics. I have DP and, following my diagnosis, my mother and her mother realized they likely have it, too.
When people first find out that I am face blind, they often ask if I can see what they look like. The answer is simple: Of course. Individual features make perfect sense to me — it’s putting them into the context of one whole face that I find challenging.
I once explained my face blindness to a college classmate like this: If we were to spend an entire day working on a group project with two 5-foot-5 white women with blue eyes and shoulder-length, wavy brown hair, I’d be able to point out the fact that one of them has a broader smile and a rounder face, while the other has a more sharply defined nose and arched eyebrows. But the next day, when one of them waved at me in the cafeteria, I’d be hard-pressed to tell you which of the two women she was. And if in the interim she had, God forbid, cut her hair or swapped her contact lenses for glasses, I would reintroduce myself to her as though we’d never met.
Scientists are still working to figure out what causes developmental prosopagnosia. Currently, there are no treatments for the condition. Instead, most people with face blindness develop a toolkit full of tricks and techniques that help them to navigate the world around them.
Whether it’s because I am a writer, because of my face blindness, or because I simply find people fascinating, I’ve always been a keen observer. I’m particularly in tune with the ways people walk and talk and dress, and I make a point of jotting down defining characteristics I think might help me to identify them in the future. (My Notes app is filled with fragments like “bald doorman at office is Billy” and “loud laugh @ run club = Madison.”)
Many people with prosopagnosia find it difficult to conjure up images of faces in their heads. That is certainly true for me. If I close my eyes and think of my sister’s face, I can make out only a blur of her features — wavy blond hair, button nose, full red lips — in a shape that represents a face. And yet, when I want to picture almost anything else — an apple, my dog, my kindergarten classroom — I can call forth that image with rich detail and little effort.
Even now, almost 10 years after my diagnosis, I find myself genuinely shocked each and every day by the recognition abilities of the people around me. My boyfriend, for instance, recognizes people on the street whom he met years earlier. And my sister intrinsically knows that the curly-haired brunette in “The Princess Diaries” is the same Anne Hathaway who, decades later, wore her hair straight in “Ocean’s 8.”
The ability to do either of these things seems implausible to me. Fortunately, I have never been unable to recognize my mother on the street, or myself in the mirror. Such possibilities sound as insane to me as my difficulties may seem to others. And yet, for many people with more extreme cases of prosopagnosia than mine, that kind of struggle is a daily reality.
When I am first getting to know someone, I note if they have a tattoo, a necklace, or a wedding band that they wear every day, and I use that as a crutch. I do this because now, at 24, I understand our society expects a person to be able to recognize her co-worker even if that co-worker has cut her bangs, or that running into your longtime dentist on the street and having no clue who they are is at best awkward and at worst very rude. For me, this is, by far, the hardest part of being face blind.
Two years ago, a friend saw an ad on a bus soliciting people who experienced face blindness to participate in a study run by the Department of Psychological and Brain Sciences at Dartmouth College. Naturally, he sent it to me and, without much thought, I decided to fill out the online form. A few months later, I was surprised (and, oddly, somewhat flattered in that “Mom, I got into Dartmouth!” way) to receive an email asking me if I’d be willing to come up to New Hampshire and take a functional MRI.
Following a lengthy coordination process, I found myself at the Hanover Inn, in a tiny, adorable, all-expenses-paid room with my boyfriend. We were determined to make a weekend out of it. After coming home from dinner on Friday night, we lay in bed, slightly tipsy, and watched “Grey’s Anatomy” (a show I’m enjoying greatly even though Shonda Rhimes has the frustrating habit of killing off characters just as I finally learn who they are).
When my boyfriend asked if I was nervous about taking part in the study, I knew that he was referring to the possible claustrophobia and discomfort that can come with being strapped into a magnetic tunnel for hours during the MRI. But it was at that moment that I realized that I wasn’t — not even a little.
Even more so than my face blindness, my everyday existence has been characterized by a lifelong struggle with anxiety. Some of it is chemical, based in the brain, and some is inherited, no doubt, from the long line of paranoid, neurotic New York Jews and nerdy, sequestered Alaskan scientists from which my particular genetic code was made. For this anxiety, taking Prozac has been life-changing.
But some of my anxiety — the kind that has persisted the longest into my adulthood — has to do with the fact that I am face blind in a world where, to my continued, daily surprise, other people are not. This realization has been almost as profound for me as the initial realization that I was face blind.
Under any other circumstances, I would be engaging in my worst nightmare at Dartmouth. I’d be meeting people I had long been in touch with via email for the first time in person, and I’d be spending the whole day with them. Then, the next day, I would be doing it all over again — and this time, everyone would be wearing a brand new outfit and be less quick to tell me their name.
But these scientists already knew I was face blind. If I ran into one of the people conducting the experiment later that night at a bar and didn’t recognize them, or reintroduced myself to someone I’d spent an entire day with the day before, they wouldn’t find me rude. My biggest anxieties — my worst-case scenarios for any other situation — were, to these people, fascinating empirical data.
For the first time in my entire life, I felt completely free.
The next morning, I arrived at the Moore Psychology Building on a hilly edge of Dartmouth’s campus at 9 a.m. armed with only an iced coffee, a chocolate croissant, and Donna Tartt’s “The Secret History.” I was eager to learn everything I could about prosopagnosia — both mine and others’ — and to talk with the people who had quite literally dedicated their careers to studying the thing that I lived with daily.
Over two days, I took more than a dozen online tests. I was asked to memorize “target” faces, landscapes, cars, voices, and bodies, and then to recall which of them I’d previously seen. I spent three hours inside the MRI, watching as a series of faces, bodies, patterns, colors, and objects played on a small screen above my head, and moving only to click a button strapped to my hand when the clips repeated. The final exercise in the study — and the one I found most odd and intriguing — involved wearing a virtual reality headset to navigate through a small town in Sweden.
Neuroscientists have all but determined that navigational issues and prosopagnosia are likely two sides of the same (lack of) spatial reasoning coin. Learning this was yet another “aha” moment for me. I had spent my entire life blaming New York’s clearly numbered streets and the fact that I am a lefty in a righty’s world for my tendency to get lost in a restaurant on my way back from the bathroom. It was nice to learn that something else might be at play.
The entire experience at Dartmouth was extremely cool — and extremely exhausting. “I feel like I just took the SAT, but only the sections I’m bad at,” I texted a friend after the first day.
The testing confirmed what I already knew: My prosopagnosia is “severe.” The very kind and patient postdoctoral research fellow who ran my experiment tried to explain my results in detail, and I nodded politely as words like “gray matter” and “synapses” went in one ear and out the other. I was less interested in the science itself (other than the scan of my brain, which I made sure to send to all my group chats), and more intrigued by the stories of the other participants in the study.
I learned about a 15-year-old boy who had come in for testing after presenting with another kind of face blindness known as prosopometamorphopsia. For him, and others like him, individual features appear to shift and morph around their face. I immediately googled the condition and it blew my mind to learn that some people even theorize this might be why Pablo Picasso painted portraits in his distinctive way.
Another participant told the researchers that he had spent a full college semester not realizing that a friend from one of his classes and his roommate were the same person. Though the research assistant told me about both of these participants with equal levels of fascination, only the first case surprised me. I have no doubt that I’ve done something similar to the second situation many times in my life.
Prosopagnosia is often embarrassing, and occasionally funny. I am constantly laughing at my blunders, and I know my friends and family take great pleasure in watching me discover that two of my favorite movies or shows feature the same actor. (Learning that Zooey Deschanel is Jovie in “Elf” altered the course of my life, though I hear that’s somewhat common.)
Prosopagnosia is also isolating. Aside from my mother and grandmother, I’ve never even met anyone who has told me they suspect they might have it. There’s not much representation of the condition in the media (although, Brad Pitt’s revelation that he has it gave it some brief attention), and whenever I try to do research beyond the realm of Wikipedia, I find myself getting lost in the complexities and jargon of articles written by and for neuroscientists.
This is frustrating, because face blindness is one of the biggest parts of my identity — as much as being a New Yorker, a writer, and a chronic consumer of pop culture and media. (I have, despite my challenges, made it a priority to recognize each member of the Kardashian-Jenner family tree, which, let’s be honest, is no small feat for anyone.) It would be nice to be able to share it — the labor, the anxiety, the embarrassment, and the humor — with people who understand it, or who are willing to try.
And, ultimately, that’s why I’m writing this. Though I do not think my face blindness is the most interesting thing about me, I recognize that there are people out there who might. But for me, and, I suspect, others like me, this is about more than telling an entertaining story. If more people knew about prosopagnosia, it would allow me to go through life with significantly less anxiety, like those two days I spent at Dartmouth.
So, now, if you stop to say hi on the street and see me floundering my way through the interaction, at the very least, you’ll know I’m not a complete asshole.
Ari Brown is an essayist, copywriter, and born-and-raised New Yorker. She has a degree in literary arts from Brown University and a half dozen works-in-progress that she hopes to one day finish. You can find her curated works at aribrown.org and her curated life events @ari.br0wn on Instagram.
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