What it’s like to live with a disorder that means sometimes I can’t even recognize my own family members—and why I’m not keeping it a secret any longer.
When there was a familiar knock on our front door around eight at night on a Friday, I knew it was my dad. But then my mom, in her oversized cat sweater and baggy jeans, removed the door chain from its lock and opened the door, revealing a tall, slender bald man with no facial hair.
“Who’s that?” I asked, in my blunt six-year-old way.
“It’s Daddy?” My mom’s voice sounded uncertain for a minute, but then she laughed. “He shaved his head!”
I had never seen my dad without his full, wavy dark brown locks before. They were unlike my mom’s pin-straight light brown long bob with face framing bangs. I looked him over. My dad was still wearing a long-sleeved red plaid shirt, blue jeans with a belt, and heavy black boots. He had a pair of sunglasses sticking out of his pocket.
“Pumpkin, I shaved my hair.” That was my dad’s voice and he always called me pumpkin, so I started laughing, equal parts nervous and relieved. “Are you excited to spend the weekend together?” It took me a few moments to warm up to the idea that this was my dad, but then I launched into a list of things I wanted to do with him for the next two days, and watching both my parents smile at me reassured me that everything would be okay. My parents didn’t notice that my panic was unusual at the time, because it’s common for young kids to learn about permanence when someone drastically changes their hair. But although the panic subsided in the moment, I knew the feeling was probably related to how unsettled I felt when I was looking for my mom at the grocery store or when a neighborhood kid waved at me from the playground.
When I was around seven or eight, we learned that I have mild prosopagnosia, also known as “face blindness.” Prosopagnosia appears to be different from other neurological memory problems because it doesn’t cause any other issues with memory and isn’t always caused by brain damage — as in my case, it can be developmental and genetic. I’ve had difficulty recognizing almost everyone in my life from time to time, whether it’s someone famous, like Harrison Ford or Taylor Swift, or someone I know intimately, like my best friend or my own dad.
My face blindness comes with a set of challenges, including the surge of panic I feel when I have to search for someone I know in a large crowd. There’s a deep social stigma attached to not recognizing someone that you’re supposed to know, so I’m often too afraid to admit that I struggle with this, which leaves me vulnerable every time I’m not positive whether or not I recognize someone.
Brad Duchaine, an associate professor in the department of psychological and brain sciences at Dartmouth College who is on staff at the Prosopagnosia Research Centers, says that face blindness can cause social difficulty, particularly because people are often offended when you don’t recognize them. He adds, “It also causes workplace difficulties. If you fail to recognize your boss in the elevator, it’s not going to be good for your career.” When I worked in a mid-sized office with about 150 coworkers, daily interactions like mornings, meetings, and passing people when I stood up from my desk in our open office were hell. When I was preparing my ahi tuna salad at lunchtime in the kitchen, trying not to stare at the redhead man next to me, a flash of panic washed over me when he looked my way. Did I know him? He wasn’t in the small social media and publicity department with me; I’d already memorized the clothing, hair, body language, posture, and voices of everyone on our team. When in doubt, I never explicitly introduce myself or say, “Hey, it’s nice to meet you.” Instead, I opened with, “That looks delicious,” when he removed his croissant from the microwave, searching for signs that he recognized me on his face. Other people’s eyes lit up and their expressions became more trusting when they recognized me, even more so when we were intimately familiar, and I look for those cues during interactions where I can’t recognize someone.
I silently begged that I hadn’t said the wrong thing, that he wasn’t a complete stranger who would find my comment off-putting. I never knew how conversational to be with people if I couldn’t recognize them. Asking someone about their weekend felt reserved for coworkers I had interacted with more than a handful of times, but I often wasn’t aware when I’d crossed that threshold.
“Thanks, I got it from South End Buttery down the street. If you haven’t been yet, you should check it out,” he said. Sounds like we haven’t talked before, but he knows I’m fairly new here, I thought, trying to push away my fear. He wouldn’t realize I didn’t recognize him if I didn’t make it obvious.
I know how hard it can be to be open about your differences, both inside and outside the workplace. So I’ve kept my face blindness a secret with the help of some adaptive strategies I keep up my sleeve for moments of awkward interaction, like carefully picking my opening lines, and memorizing hairstyles. Technology has saved me on a regular basis since social media became popular in the mid-2000s, and even more so with smartphones. Before I meet up with someone, especially if I’m likely not to recognize them because they don’t have a unique identifier (like a red beard, a wheelchair, pink hair, or a mohawk), I can study photos of them saved to my phone or posted to their Facebook. I can look for the kind of clothes they might be wearing, how their hair is currently styled, if they tend to smile without teeth.
Duchaine says that most prosopagnosics have alternate systems for recognition. Many study Facebook and photos, while some are even hoping facial recognition apps like the one developed for Google Glass will become widespread. A common tactic (which I also use) is making sure to arrive at a meeting spot before anyone else so we won’t be the one picking out a singular face. People also tend to specialize in particular features. “One guy I worked with focused on people’s jeans,” says Duchaine. “In the town he grew up in, everyone wore the same jeans every day.”
I often rely on hair as my main recognition cue, which is why I’ve mistaken other tall, bald men wearing sunglasses for my own father (never enough to actually say, “Hey, Dad!” to them, thankfully, but I’ve walked up to quite a few bald strangers), and why I didn’t recognize him when he first went bald.
Hair, clothing, and other cues are also central to how I identify myself. I don’t always instantly recognize myself in a passing mirror or a photo, particularly if I’m wearing gym clothing or I’m wearing my hair up, since those are so far removed from my daily look. During my senior year of high school, when I cut eight inches off my hair to donate to Locks of Love, and chopped the rest into a pixie cut, seeing myself in the mirror or a selfie actually made me do a double-take. I hadn’t realized that my signature face-framing hair and blunt bangs were how I recognized myself, and I couldn’t see my reflection as me without them. And more than that, my hair is central to my identity. My mom, who died when I was a kid, wore her hair the same way I do — and without that hairstyle, when I look in the mirror, I don’t see what other people are always saying: “You look just like your mom.” I can’t remember my mom’s face, because I don’t remember anyone’s, but I don’t want to lose the little details I do remember about her, like her refusal to wear makeup, her jean jacket, her oversized green Melrose firefighters’ T-shirt, or her blunt brown bangs hanging above her light blue eyes.
I disliked the change so much that I eventually bought a wig and extensions, and resolved to never change my hair again.
* * *
When I was an undergrad in college, I met the only other person who has ever admitted to me that they have face blindness. We were talking about horror movies when my friend, who spends more time during our regular movie marathons making mile-a-minute jokes than analyzing the plot, said, “I can’t watch movies with a lot of characters because I can’t tell anyone apart. The villain will come on screen and I’ll be like, ‘Who’s that?’ and everyone else will be like, ‘That’s the killer, Jon!’” He and I laughed for almost 15 minutes until we had tears streaming down our cheeks.
A few years later, I came across Holding Up the Universe, by Jennifer Niven, and Bone Gap, by Laura Ruby, both novels with prosopagnosic main characters. After reading Holding Up the Universe, I told my girlfriend — who has never heard the inner monologues of panic whenever we’re out at a mall and I lose track of her — how close to reality the protagonist’s daily life is, with the exception that his face blindness is more severe than mine.
Bone Gap was a book club pick at my workplace, and when a coworker brought up how interesting the condition was and that she’d never heard of it, I was itching to say, “Actually, I have it. I wouldn’t recognize any of you outside this office.” I was dying to tell someone that the reason I avoid office jobs with a large staff is how stressful it is trying to figure out if I’ve introduced myself to someone (unless it’s the one guy with a long black pony tail or the woman who wears printed hijabs). But as my coworkers talked about how hard it must be for someone to live with face blindness, I clammed up and kept my mouth shut, not wanting to cross the line from professional into too personal and risk alienating myself.
I sat alone at lunch for half of eighth grade after the school circulated that I was bisexual, and what I love most about my adult life is that it seems I’ve finally escaped that. Every time I’ve revealed something that makes me different — my queerness, the physical disability that I use a lavender cane for — people use it as grounds to harass and ostracize me, or turn me into a sideshow with deeply personal questions aimed at their own consumption and not my comfort. How do I have sex with my partner? What were some ways I was left out as a kid with a disability? Could I play with other kids on the playground? I know people would ask these kinds of questions about my face blindness; they would poke and prod it until they were satisfied. So I’ve always kept it to myself.
I hit my breaking point a couple of weeks ago when my cousin visited from Texas. We’re closely related, since her mom was my mom’s sister and her dad was my dad’s brother, and we look alike. But when she asked me to get dinner with her friends and her at Hooters, I panicked. I got to the restaurant right at seven, wondering: Was she inside yet? Would I see her if I walked around the restaurant, or would I be caught stopping at each individual table, studying its occupants as they awkwardly chowed down on chicken wings? I called her three times to no avail before finally asking my girlfriend if she could take a quick walk around inside, where she quickly spotted Nicole.
“You didn’t answer your phone,” I said to my cousin with a slight hard edge to my voice, looking around the noisy, packed restaurant. There was no way I would have spotted her in this crowd. I thought that I had plans for every contingency, like calling someone on the phone to discern their location — but I had failed. What if my girlfriend wasn’t there to check for Nicole for me? Would I have gotten in my car and driven home, hungry and missing out on a night of her company? Would I, as an adult, have gone to the wait staff and asked them to announce Nicole’s name over the loudspeaker like she was my five-year-old child, embarrassing myself in the process? “I’m not mad at you, but you should have at least told me you were here.”
“I’m so sorry, my phone is in my bag.” Nicole pulled it out to demonstrate and waved in the direction of her other friends at the table. “We were talking and I didn’t hear it ringing. It’s loud in here. You could have just come in and looked for me. I’ve been here since seven.” This wasn’t a big deal to her. She couldn’t see how frantic I felt at the thought of scanning faces to try and determine if I knew someone. That was how the world looked in my eyes, like a sea of blank faces, each ready to condemn me if I couldn’t distinguish them from what looked like an identical face next to theirs.
“You should have just texted me at least once to say, ‘I’m here.’” I was frustrated; not at Nicole, although I wished she’d had the forethought to realize it was past seven and check to see if I’d called her.
As we were moving to a bigger table to accommodate our late arrival, Nicole continued apologizing for not checking her phone. She shouldn’t apologize without knowing what the real problem was, I thought.
“I have face blindness,” I admitted to her, and this was the first she’d heard of it. My heart raced in my chest. I was still afraid she would ask me detailed personal questions or simply not believe me. I was also born without a sense of smell, and throughout my life, I’ve been met with immediate disbelief when I tell people; they think it’s impossible that I can taste and enjoy food but I can’t smell anything at all, whether it’s savory or disarming.
As I explained what face blindness is to my cousin, my heart stopped pumping so fast. She was asking polite follow-up questions because she wanted to understand, not to mock me or put me on trial for experiencing life differently. “I don’t think I would have found you in here unless you texted me to say, ‘I’m in the back of the restaurant, booth near the window.’” I recounted all the times I’d asked her where she was sitting if we were meeting in public, and she instantly remembered telling me exactly what table number she was sitting at so I could approach wait staff and be directed to her.
“I had no idea,” Nicole said. “I swear I’ll check my phone next time so you won’t have to worry.” She’ll never know what it feels like to wander through the tables and booths at a restaurant, searching for a familiar face and making eye contact with parties who want to remain undisturbed, but she’s willing to accept that I know that feeling.
The next day, she wore a bright lime green skirt and printed shirt with swans on it when we met at the Boston seaport. “My phone is going to die,” she texted me thoughtfully, as she described her outfit in detail. “I’ll be at the docks around 6:30.”
Sure enough, as soon as I noticed a flash of lime green among the crowd, I screamed her name and she turned.
I had admitted my biggest weakness, and the world didn’t fall apart. My cousin accommodated me. She wore something noticeable and made sure to meet me somewhere visible. She didn’t prod me for a diagnosis or medical details, and it was obvious she believed me, even though our abilities differ.
Her lime green tennis skirt told me something I should have known years ago: It’s okay to “come out” as face blind. So what if I thought Daenerys from “Game of Thrones” and Legolas from “The Lord of the Rings” were the same character? That just gives me dozens of inside jokes with the people who know I have a facial recognition deficit, but love me anyway.