I was on my way home, flying from New York back to Florida. In the heart of Manhattan, I had given a keynote address to a large group of researchers at Rockefeller University. Internationally known neuroscientists, men and women at the top of their field, had been interested in what I had to say. I still couldn’t believe how well it had gone.
When we landed in Tampa, the plane, full of Disney-bound families and snow birds, nosed up to the gate, and I strode down the jet bridge. Confident and successful in my big-city clothes—black boots, black tights, black silk tunic—I followed the stream of passengers ahead of me as we made our way past the gates.
But then I stepped from the monorail into the main terminal, and the passengers dispersed, and I wasn’t sure which way to go. The Tampa airport is my home airport; I’ve been there for dozens of trips. Every single time, I’ve gotten completely turned around.
The airport has a Red side and a Blue side. I’ve never been able to figure out how, exactly, those colors are relevant. It never seems to me like a place with two sides—it’s a place with many, many sides, a maze, in fact, of corridors, construction, escalators, levels, and disjointed, spiraling spaces. I struggle at every step in the process to find the next place I need to be. Where is the baggage claim area? Where is the tram to the terminals?
Dragging my little suitcase, I wandered around, looking for some clue indicating a route to the parking garage, worried that even if I found a parking garage, it might be the wrong one. Did Red/Blue apply to the parking garages? Was there one parking garage? Or two parking garages? More than two? I had no idea.
I was parked in a section with purple symbols. I knew this because I was holding a little slip of paper from the day of my departure, when I had parked my boxy Honda Element on level 3 of somewhere. The slip indicated my level number, 3, and my zone number, 6, in purple. When traveling, I always, always keep my parking slip in my wallet with my cash—precious—and now I clutched the little slip as both talisman and divining rod, yearning for it to have the power to lead me to my car and get me home.
After twenty minutes of searching, all the clarity and confidence I’d felt in the wake of the trip to New York had evaporated. I was on the verge of tears. I sat down on a chair for a few minutes and tried deep breathing. Here I was, in my early fifties, lost in my home airport. Again. I shouldn’t have been surprised—this happened every single time. But I was surprised. And I was angry at myself. I urged myself to get a grip, focus, and try harder. Come on, you idiot. This is, honestly, how I talked to myself. Get it together. Everyone else appeared to know exactly where they were going. I wiped my face on my scarf, anxious about being seen in such a messy state by someone from the university where I was a professor.
I took a few more deep breaths. When I looked up, I noticed an information kiosk.
I approached and asked the attendant as evenly as possible, “How do I get to the parking garage?” But my voice caught. I felt my eyes getting teary all over again.
“Red doors,” the woman said.
I looked in the direction she was pointing. I saw only general airportness.
“Right over there,” she said. “Can’t miss ’em.”
I looked hard. But I didn’t see anything red. I’d departed and come in on Delta. Delta is in Blue. Delta is blue.
“Giant. Red. Doors. What are you in? Do you have your slip?”
I held up the slip as though it were proof of my goodness, my hard work, my right to belong in the world among the well-adjusted effective people. Did I want her to say Oh you are doing such a good job, no one keeps track of their slip? I did.
She said, “Yeah, so you’re in purple, you’re Jannus. Red elevators, hon. Right over there.” She was still pointing as she looked back down at her counter.
I scanned the airport terminal again. I saw escalators lifting people up. Escalators lowering people down. One long set of escalators inexplicably skipped the floor I was on. People dragged suitcases. Children lugged backpacks and stuffed animals. I saw sunburned babies. I saw a restaurant behind glass on a higher floor, with a whole other escalator system reaching up to that tier. The Tampa airport has sections named after famous aviators: Lindbergh, Yeager, Earhart, Jannus. I hadn’t yet figured out how the system of named sections fit together with the color sections, Red and Blue, though I had read all about the famous aviators and can relate to you, in great detail, their stories. Their biographies are inscribed on placards placed about the terminal. I’ve learned, on previous wanderings in the airport, that St. Petersburg, where I live, was the site of the origination of the first commercial flight. To where? Tampa! Where I was standing now. I’d also learned that Jannus, whose parking area I was searching for now, had disappeared, his body never found. This seemed to me a truly terrible, cruel airport-design fail, to have us searching for a place named for someone lost forever.
“I’m not seeing elevators.” I tried to keep my voice even when I spoke to the kiosk attendant, but I knew I sounded tense and upset. Was I trying hard enough? Was I really not able to find my way? Why was this always so hard?
She came around to my side of her kiosk. She jabbed into the air with her index finger. “Straight ahead,” she said, louder than necessary. “You can see them!”
“Am I going up for the elevators? Take the escalator? Or are the elevators on this floor?” I willed myself to sound less frantic, less frustrated. I’d never, not once, made my way through this airport without assistance, but there was no need to make my problem into her problem. I said slowly, “I just can’t see where you mean elevators.”
“Oh my god,” she said. “They’re on every floor. They’re the elevators!”
I walked in the direction she indicated. That’s when I noticed I was walking on blue carpeting. Was this intentional blue carpeting, signaling the mythical Blue side, or was it just random blue carpeting? I saw no red carpeting. I wandered past glass storefronts, looking for what, exactly, I really didn’t know—red elevators, but what would be red? The doors? The frame? The walls around the elevators? At some point I turned down a corridor, hoping it might lead to the parking garage or a directory, but it was a dead end. Now, it was as though I’d never given a speech, never been to New York at all—my confidence as a person was erased.
At the end of the corridor a man was sweeping the floor, and when he looked up at me, he made eye contact. I smiled. He smiled. I asked if I might ask him a question.
“Sure,” he said, warmly.
“Could you please tell me how do I get to the parking garage?”
“Sure,” he said. “Follow me.”
And just like that, he led the way.
• • •
Have I always struggled with finding my way? I think so. I’m not certain—trying to discern one’s own interior experience of the world and see what it adds up to is an even more complex and mystifying endeavor than searching for a physical place.
But I can tell you this with certainty: I’ve worked in the same building—Cooper Hall—for six years, and I never know which way to turn when I exit the restroom. If I happen to come into the building through a different door than the one I usually use, I can’t easily find my own office. Daily, I struggle to find the English Department, which seems to hop from one side of the building to the other and is never where I expect it to be.
I get turned around in my regular grocery-store parking lot, uncertain where I left my car, how to make my way to where I might have parked. The smaller villages near St. Petersburg—Safety Harbor, Tarpon Springs, Zephyrhills—are like distant satellites, seemingly orbiting, constantly moving their locations. I can never easily find these towns, or new places in my own town. Even though I’m from Florida, and have spent much of my life in Florida, I rarely visit these places, or any new places.
I get turned around so easily that each time I leave my house, my nerves buzz. Will I be able to find my way back home?
• • •
I grew up in a strange home with a strange mother who heard voices and saw grotesque figures and threats I never experienced except through her. We were under constant siege; I can’t imagine the terror my mother went through on any given day. My absent father was a heavy drinker; I remember being thrilled and terrified when he was home, and thrilled and terrified—and also ashamed—when he was gone. My childhood took place on this uneven, rickety, chaotic trajectory. As a family, we were completely lost.
I don’t know if I had way-finding problems as a child because I wasn’t allowed to leave the house much. Friends were forbidden; talking at school, except to a teacher, was forbidden. I never went to a sleepover. There was no television, radio, or telephone allowed. I was permitted to ride my bike on our street, which was a loop with a dead end—it would have been impossible, even for me, to get disoriented on a bicycle on my childhood street. It was like being a goldfish in a sunny tank.
I spent most of my time drawing, writing stories, and playing or working outside by myself; in fifth grade I had a functioning, sometimes flourishing, vegetable garden with cucumbers and tomatoes and watermelon. Because I grew things and could cook and do laundry and make books on my own, from a young age I often felt clear and quite capable, at least at home or on my bike. Out in the world, I knew we were weird and different from other people, but we weren’t out in the world very much, so I didn’t think anything was wrong, not really. If you’d asked me then if I had any difficulties, I would have explained my problems this way: we were unhappy because my mother was afraid of everything, but if we could just move into a safer house, she’d be better, and all would be well. My diagnostic tools were limited to Mom’s upset, and my solution was always some form of Try to make Mom happy. But she was happiest when she was left alone. And so I spent my childhood mostly alone. When I wasn’t riding my bike or playing or working outside, I was obsessed with making maps. I drew thousands of pretty houses and elaborate, safe villages; drawing places was my fervent pastime.
It’s hard for a kid to distinguish between confusion and mystery, what’s knowable and normal and what’s not-knowable and unusual. You’re not expected to discern, when you are little, where places are in relation to other places, or how one gets to places, or how the parts of the city all fit together. When you’re young, even in a dysfunctional family, you’re usually driven around, and my mother drove us, but in her own special way—we took side roads and out-of-the-way routes. These circuitous routes came with circuitous explanations: we were, my mother believed, being followed, monitored, tracked. At home, she insisted I move about on my hands and knees to stay below the window line; in the car, she had me duck down when “they” were getting too close to our vehicle. I didn’t question her observations or distinguish her fears and concerns from regular mom rules—all of her directions were, of course, the backdrop of my life. Brush your teeth, memorize that license plate, don’t talk to anyone, ever.
But I know at school, I followed other kids to get to the auditorium, to the cafeteria, to my classes, to the gym. I wasn’t aware I was doing this; I’d always followed the other kids. An essential part of my understanding of the concept of school was do what other kids do.
I didn’t trust my mother’s understanding of the world like I trusted the kids’. I knew the mall was the other way from the way she was going. But maybe it wasn’t. Or maybe it was.
Thus, I grew up calibrated to confusion. My internal compass never knew true north, true anything. I never knew where we were or where we were going, and this confusion applied to every single aspect of my life.
But a kid dwells in an empire of hope. I often despaired, but I also fully expected that when I left my mother’s house, things would right themselves. Some kind of grid would snap into place, and I’d be—at last—oriented, happy, and free to go wherever I liked. I believed that when I got older of course I would understand how to take a direct path, how to locate a classroom or a parking garage and my car. I believed I’d get my bearings and that they would always be mine. Most of all, I looked forward to the day when I’d be able to find and make and keep a friend.
In high school, I moved in with my father, and as soon as I turned sixteen he insisted I get my driver’s license. I did not want to drive. But I needed to get to work. And my father urgently insisted on my driving him around, and it would be better for us to do this legally. He was in danger of losing his own license as DUI laws tightened in the 1980s.
The first afternoon I was legal, I drove my father down Orange Avenue, toward his house, in his car. I was uncertain exactly which turns to take, but he was my GPS; he’d yell at me when to turn, and if I confused right and left and went the wrong way, he yelled me back on track. It irritated him I didn’t know my way around Orlando—I’d lived nowhere else—but I chalked his irritation up to his personality. Everything irritated my father. I didn’t see how navigation was my problem. How could I possibly know where things were? I’d never driven before! I didn’t care where the ABC liquor store was. I didn’t drink liquor. Was I secretly subverting his drinking by driving right past ABC, not seeing? By the time he yelled me into a U-turn, and I attacked, with his car, the gravel parking lot of the liquor store, I am certain I felt pleased. I didn’t want to go to these places by these routes my parents had charted. I attributed part of my way-finding difficulty to strategy—my brilliant, soft rebellion. I didn’t really believe I couldn’t find my way. I must have been doing it on purpose, for good reason.
But in truth I was a nervous wreck when driving, not just because I had no idea where I was going, but also because—as I have since realized, after many harrowing years behind the wheel—I have to constantly fight the strong sensation that I’m on the wrong side of the road. When I look in the rearview mirror, I’m aware something is very wrong with my perceptive abilities: I can’t tell which side the cars behind me are on. Arrows on signs are almost impossible to translate and transfer into a behavior choice—I can see they are pointing, intent on some direction, but it’s hard enough to sort out direction on a sheet of paper at home in a quiet room. To be hurtling down Orange Avenue in heavy afternoon traffic, my father smoking and drinking, the radio blaring, cars on all sides of me, going forty-five miles an hour—I felt we were on the edge of death, and probably we were.
Of course, back then I imagined—not unreasonably—that my anxiety had more to do with my father next to me, drinking gin out of a tumbler and refusing to wear his seat belt and yelling at me, not to mention my fractured relationship with my mother, my abusive boyfriend, and the generally complicated situation of being a sixteen-year-old girl who was failing math, science, and physical education with no future prospects at all.
I didn’t understand my confusion. That’s the signature move of confusion. It creates pervasive static in your brain and covers the world with a veil.
So, with my father banging on the wheel, yelling, I simply slowed down. I drove as if through fog. I could see objects, but I didn’t always understand what I was looking at. I still don’t.
“Turn here,” he said.
There was only one way to turn—the side road, Nela, made a T with Orange Avenue. One choice—a street. On the other side were railroad tracks.
So I drove through the intersection, making my turn. And then my father lost his mind, grabbing the wheel, spilling his drink, whacking me on the chest. What was I thinking? Turning left on red?
“You said turn!”
“Not on red!”
I didn’t say anything. I pulled into the Cumberland Farms parking lot, crying. I got out of the car. I’d felt so confident. I knew one could turn right on a red light as long as no cars were coming. I’d thought I was turning right. Right on red—it was easy to remember.
My father refused to take the wheel, explaining this was an important lesson. Weeping hysterically, feeling we would probably die before we got to our driveway, I got back in the car and drove five miles an hour the rest of the way home.
• • •
I have struggled with left and right my whole life. In kindergarten, I looked at my thumbs to see which hand to put over my heart for the pledge. The hand they wanted us to use was not the one where my thumb had a bump on the knuckle.
To this day, I hold my thumbs together and look at them closely before I turn on the stove, L or R. When my doctor says to hold out my left arm so she can draw blood, I sneak a peek at my thumbs.
Horns blaring, cars careening, I turned left on red lights many times, not able to understand the difference between “right on red” and “left on red” or to remember which one was okay. Eventually, I stopped turning on any red. This also caused honking, but at least my car wasn’t moving. I just rested my head on the steering wheel. It’s better this way, trust me, people.
If I could have, I would have stopped driving altogether. But after I got my license, my father often left me on my own, sometimes for weeks, sometimes even a month at a time, and I had to drive.
His house was on Gondola Drive, a long, straight road that intersects perpendicularly with Sand Lake Road, another long, straight road. I’d drive and drive and drive Sand Lake, way out in one direction, trying to find my way home from Disney, where I worked—no Gondola. So at some point, when I was out of Orlando and into the countryside, I’d turn around. Drive back toward town, and again, there would be nothing familiar, no Gondola. Maybe I was looking on the wrong side of the street—Gondola was only on one side of Sand Lake. So, I’d go back and forth. She gets lost on a straight line was the refrain my father used.
Sometimes I grabbed the steering wheel and shook it; sometimes I didn’t really care if I ever got there. I sang along to whatever was on WDIZ and just enjoyed the windows rolled down, freedom in being completely lost. But the longer I drove, the more I lost confidence. The more I lost confidence, the more shaky I got and the more turned around I felt and the more I became convinced that I would never really make it in the normal world.
Once, I accidently drove clear to the ocean, to Cocoa Beach—some fifty miles away from my father’s house. I’d sensed it was taking a long time, but I had no idea I was going in the wrong direction.
Crying, I called my father from a gas station, as I often did. Daddy, I don’t know where I am. He asked what I was looking at. Florida. I’m looking at Florida.
He told me to ask for directions, and I asked the cute, rough-looking gas-station attendant, but I couldn’t understand how to turn anything he said into something that looked like a trip back to where I lived. So he wrote the directions down. Arrows. Lines.
I set off down the highway. I’ll never forget that guy in his blue coveralls running down the center of the two-lane highway, waving his arms wildly to get my attention, me noticing some movement in my rearview mirror, thinking here comes a psycho killer, thinking maybe I’d left behind my purse.
But I had my purse.
I didn’t turn back to see what he wanted. Only after I realized I was going out to the beach again, and Orlando was the opposite way, did I figure out why he’d run after me.
• • •
When I went to college, I took a bike. Somehow my closest friends, Todd and Sara, quickly noticed my navigation problems, and they had solutions. One or the other of them often walked me to class. They suggested I could wear a silver bracelet on one wrist and a gold bracelet on the other wrist, and then, voila, I would be able to tell my left from my right! And in the car—not that I had a car, but they wanted me to conquer my fear of driving—they wanted me to place a green cushion on the left side of the dashboard and a purple cushion on the right side.
It was the first time in my life others were really trying to help me, and I hated to quash their ideas; I loved how much they cared. But I knew none of their strategies would work. I had my thumb trick from kindergarten, which I still relied on to sing the national anthem before football games to get the right hand over my heart. In a vehicle, I tried to explain to them, the steering wheel already clearly demarcated one side of the car from the other. I knew which side of the car was which. Having more information about left and right inside the car wouldn’t help me find my way.
What would help?
In college, I began to realize that the way-finding issues not only were related to left and right, but also were connected to something much larger. Todd and Sara’s helpful (but not at all helpful) solutions made it apparent that they were operating with a built-in language for constructing space and conceptualizing place, and that I didn’t have access to that language. I began to feel as though I were missing a sense, like smell or touch. A crucial part of human experience, human knowing, was just not available to me.
At football games, the stadium burst into cheers and despair, and those around me applied great scrutiny to each dramatic turn of events, and I could not see what they saw. I couldn’t “read” the field, couldn’t understand what to watch for as the players ran around in their random patterns. Did I not care? I did. I liked sports. And I tutored some of the star players. Wildly, I wanted to fit in. I wanted to see in order to be loyal to my university’s team and also to understand, to be part of the conversation everyone was having about the game down on the field. Most of all, I yearned to “get” the larger game, the pattern of our lives. I wanted to understand how we fit together, how we coupled, how we moved about socially and where we were going, when and how and why.
To explain my difficulties—to myself as much as to anyone else—for a while I told people I was dyslexic. Todd and Sara rightly found this ridiculous; I was an English major, reading at least a book a week, a fast and voracious reader, good at spelling, and was also typing out my third unpublished novel. But that diagnosis was as close as I could get. I knew it wasn’t exactly correct, but for a time that self-description gave me a place to hang my hat, to share with my closest associates this important fact: my brain isn’t like yours.
When someone suggested I place a plastic figurine on the dashboard or tie a red ribbon on my right finger, I imagined how a dyslexic person would feel if someone said Why not just use a dictionary? Well-meaning friends have often suggested I use GPS as the solution to my problems, but with its confusing litany of commands to take rights and lefts, GPS not only doesn’t help but actually makes things more difficult.
A dyslexic understands the concept of a word. I understand the concepts of place and navigation. What’s hard is the function, the process of performing the task of “reading” a place and understanding my own position in that place.
I get lost on the empty highway because there’s not enough information.
I get lost in the airport because there’s too much information.
In college, I was on every level lost in a sea of confusing faces and places, and I had no way to understand how the confusion might actually be completely separate from my personality, my self-understanding. I experienced myself as categorically wrong, and my separation from my fellow humans was profound.
Who would marry me?
How would I have children? How would I ever find them?
I always had an uneasy feeling I was going in the wrong direction. I was lost on a straight line, and the line was my life.
• • •
Then, in my thirties, I began writing a memoir about living with my mother. I was pretty sure she had undiagnosed paranoid schizophrenia. While doing research in an attempt to better understand her experience, I happened upon two words I’d never before seen together, two words that, in the moment I came across them, changed the course of my life. I was reading a psychology textbook, which explained that for some people with paranoid schizophrenia, it was hard to respond to one’s fellow humans because reading emotions was difficult. Because much of our information about someone’s inner state comes through the play of emotions on the face, the text mentioned face recognition as a concept, in passing: a person with schizophrenia could usually recognize an individual, but how that other person might be feeling or responding—identifying that, it seemed, might be a struggle. Instantly, I understood that “face recognition” was a special thing, a concept, a human ability. And I also understood that it was something else I could not do: I couldn’t tell people apart by face. I set out to learn as much as I could about the condition, and eventually, at Harvard (or MIT or maybe both—there were a lot of tests and a number of buildings involved and researchers from both campuses), I was diagnosed with severe prosopagnosia. I wrote a memoir, You Don’t Look Like Anyone I Know, about my experience with the condition—even a mild case is potentially socially devastating—and ended up on Good Morning America, talking to George Stephanopoulos (whom, of course, I did not recognize).
More important, by telling people about face blindness, I was able to make authentic connections for the first time in my life, and some of my anxiety lessened. After the book, I began spending summers in New York. There, I felt relaxed: there was no driving, and the city was a grid, easy to navigate. Plus, almost no one knew anyone on the street; for everyone, the city was a sea of strangers. Now in my forties, for the first time I felt clear and happy and more or less oriented.
Every spring, before I arrived in the city, my literary agent would insist I should meet another of her authors. This other woman and I had so much in common, my agent explained, we just had to meet. We were both cyclists, memoirists, professors who lived elsewhere, both subletting apartments in the city every summer. Year after year, I put her off because I didn’t need any more friends, and, to be honest, the woman sounded kind of boring and stuffy (she taught at Carnegie Mellon, and I was intimidated by that), but agents are nothing if not persistent. Finally, one May, I relented.
I had rehearsed my route the evening before I emailed this Jane Bernstein person. I had suggested a place and time: Bethesda Fountain, 5 p.m. I was grumpy with low-level dread the whole day.
Jane, my agent had told me, lived in Pittsburgh, but she was from New York originally. My agent was certain I would love her. I knew I would not. Regardless, I didn’t want to be late. So I left my sublet twenty minutes early, just in case, and I walked five minutes over to Central Park to meet this woman I’d never met before. We’d sit by the fountain, chat, be done by 6 p.m.—no way would I let it mushroom into dinner.
I sat alone by the fountain for a long time, waiting for her to find me. When I realized she wasn’t coming, I was actually relieved she had stood me up. She’d call tomorrow, I imagined, and apologize, and I’d say no worries, and that would put an end to the whole business. I was thinking about the possibilities for my evening, and that’s when my phone rang.
It was Jane. She was so sorry, so, so sorry. She was at the fountain. And I wasn’t there. She had looked everywhere for me. She knew I was face blind, and she sounded very worried and very sorry. But she had just now realized that she was at a different fountain, she said breathily. A terrible error, and she was just now leaving the Cherry Hill Fountain and heading toward the Bethesda Fountain, but she was concerned she was going in the wrong direction and was really sorry she was so late. She was truly on her way, she said, walking now, but she had to stop talking because she was trying to follow the little dot on her phone.
“Those are so hard,” I said. “Those dots. I can never follow them.”
“Tell me about it!” she said. “I think I’m walking around in circles.”
“GPS doesn’t help,” I said.
She said, “GPS doesn’t help at all!”
“I know,” I said. I offered to go find her, but she said no, wait there.
I stood up from the bench and began to look for a frantic person looking for me. Now, I couldn’t wait for her to arrive. Because I felt I’d known her forever.
It took us a long time to find each other. That evening, we walked for almost three hours, and we saw each other for dinner later that week and weekly for the rest of the summer; we’ve been friends for more than a decade now. We have weekly contact—email, phone calls, old-fashioned letters—and we visit each other, trade work; she’s one of my closest friends in the world.
At some point, she revealed that she, too, had not really wanted to meet a new person, hating too to cut the work day short, taking on the obligation of a new friend or the obligation of saying no.
That first evening in Central Park, we didn’t get lost. I’d studied the route carefully, walked it myself multiple times. I wasn’t certain, as I led her down the bridle path, but I was pretty confident, where we were in the park. I was surprised, since she had previously lived in New York for many years, that she seemed to have no clue whatsoever how to navigate the park. As we walked, I steered, feeling weird to be better at directions than someone else—had this ever happened before? We talked that day about many things—books, relationships, our respective English departments, childhood, traumas, writing writing writing—but we didn’t talk about this much deeper thing we had in common, the systemic way-finding problem we both shared.
I didn’t yet understand my troubles in this arena as I’d learned to understand face blindness: a true learning disability, and a profound one that needed not only my gracious attention, but much, much more.
It wasn’t until three years later, when I visited Jane in Pittsburgh and she picked me up at the airport, that I saw for myself how she struggled mightily to lead us to wherever her car might be, and I realized it was actually just like face blindness. I saw her struggling to make herself do something she actually could not do. And, I realized, as we retraced our steps and began the search for her car afresh, I have this same thing, too. And it’s real. It’s serious—an actual learning disability, a deficit when it comes to “reading” places and scenes. And it’s something I hadn’t even really looked at or tried to name. I wondered for the first time, that day in Pittsburgh, as Jane grew ever more flustered and more confused, if I could deal with my navigational challenges in the same way I’d dealt with face blindness, by doing a lot of research, searching for a cure, and figuring out how to tell people and how to ask for help. And I also wondered if my face blindness and my way-finding difficulties were somehow related.
Jane had turned in a tight, concerned circle at the top of a parking garage, berating herself and lamenting her inability to find her car. She kept saying something so familiar to me: I wonder if we’re on the wrong side. She was so upset at herself. That was familiar too. But I noticed how I didn’t blame her or fault her. I just wanted to help her. I felt patient and supportive. And yet I showed absolutely no compassion for myself when I was in the exact same position. It struck me as so interesting that I was able to diagnose my friend and treat her with compassion, but I hadn’t been able to treat myself that way, to acknowledge way-finding is a thing I can’t do well and that the anxiety could be dealt with in a very different way. And that’s when I began to really wonder: could I treat myself as I treated my dear lost friend?
On my visit to Pittsburgh, Jane was anxious about driving some students across town because she always got lost, turned around in her own town. I encouraged her to come out, simply tell the students, and everyone hereafter, in a calm way, without anxiety or self-abnegation: I have this deficit, it’s just a thing I can’t do, like not speaking French or not juggling. I could see so clearly this was what sheneeded to do. Why not ask the students for help? When I spoke to her along these lines, I heard my coaching, therapist-y tones. And her response, that she couldn’t really imagine telling students this, was tinged with a shame I also found familiar.
After the face-blindness diagnosis, it had taken me years to tell people I had the condition. I was so bound by fear and embarrassment. It sounded so weird and was difficult to explain. But now, a decade later, I loved telling people about the condition.
Coming to terms with face blindness had dominated my life, my identity. It was difficult to find ways to explain to people Oh, there’s this other thing, too—I can’t recognize faces or places, either! But I had a basis, a script, something to add on to. Jane wasn’t ready to come out as place blind.
But I was. With face blindness, I had experience with not-knowing, confusion, and asking for help.
• • •
After school when I was a girl, I decamped alone to our Florida room, an unused sunroom at the back of our house. There, I’d set up a kind of cartography workshop, with Scotch tape and a cigar box of pencils and erasers and rulers and a ream of typing paper. I taped blank pages together to create great charts, on which I drew vast, complex maps of towns filled with neighborhoods, parks, business districts, and highways that led off the page, linking to other towns—a pre-digital SimCity. At the edges, I drew little signs with sprigs of grass at the posts: Niceville 2 m. and Hospital Ahead!
There were never people or cars. I was obsessed with creating patterns made of roads, with places in relationship to other places, as though I was teaching my brain to wire for way-finding. Looking back, I see that I was struggling to make for myself a world I could navigate. In my map world—unlike in the physical world—I was never lost. I was the opposite of lost. I was the Maker.
One day, recently, Jane was digging through old boxes in her basement, and she texted me a photo of one her childhood drawings—a map of a town, eerily similar to mine. My towns had orange groves and cattle ranches, and hers fire stations, railroad tracks, and subways, but it was essentially the same map, the same attempt to orient the self in the long, confusing attempt to enter the world.
In all those hours and hours we spent alone, drafting and drafting, putting people and relationships into our towns, making cities and making meaning, we were trying to understand the things we couldn’t grasp.
This is exactly what a writer does when she writes. She builds a world in order to orient herself in herself. The writing is both her map and her journey. The purpose of the process is to make contact with her fellow humans. I’m here. I don’t know how to find you yet. But I’m going to make this map and find my way to you.
Is it because we were both catastrophically disoriented that we obsessively made maps? Were we writers in the making? Both? Or is it just chance?
• • •
At the Tampa airport that day after I flew back from New York, after the meeting of scientists, when I asked the man who’d been sweeping how to find the parking garage, he paused sweeping and said yes, he would be happy to help me. He also said, “This is easy.” And he spoke kindly. “This is an easy place. That’s why everybody loves this airport so much.”
I laughed. I’d heard a lot of people say this about the Tampa airport. It’s a particularly well laid out airport.
Then he walked me across the terminal to a corridor and carefully explained what I would encounter ahead on my journey down this corridor, which led, evidently, to the parking garage. He spoke respectfully, thoughtfully, without condescension. I felt like a child in a story book who’d met a wise helper.
Soon, I would find a bridge, he said, a bridge that was a walkway, over the cars below, cars that were dropping people off. And this bridge would carry me into the garage. More elevators, yes. Some turns, yes. Two levels. A going down—the parking garage stairs—to go up—the parking garage elevators (whole new set). But he went over the material so gently and slowly and patiently, never using the words right or left, focusing on physical markers—double doors, a bridge over the drop-off lanes, a row of carts—you’ll be outside then—that I felt certain I would eventually find my way.
Another part of me knew I would not actually find my way, at all—there were just too many steps, too many turns. But I would keep asking. This man had restored my faith in myself and in humanity. He hadn’t led me into a magical knowing. But he had led me back to my tribe, the human tribe.
And, holding tight to my little slip of paper, I followed the man’s instructions, and—just as important—I followed the man’s example, adopting his patient tone in how I spoke to myself, trying to be as kind to myself as he had been to me. I spoke to myself, for the first time, as I had spoken to my friend Jane in the Pittsburgh airport years earlier. This is all okay. If these elevators don’t land us in the right spot, we can ask someone again. No problem, my beloved friend. We’re going to find the car. We’re going to find it together. We’re going to be okay. It will take however long it takes, with however many false steps and questions along the way, and that’s not a problem! We’re car-finding! This is what that looks like for us.
And you know what? With no trouble at all, talking to myself in the new way, I immediately found the proper set of elevators. And, to get to the garage itself, I asked folks I passed along the way, but for the first time I didn’t feel ashamed I needed to do this, not at all. I just pretended I was new, new to the Tampa airport, new to the parking garage. And I pretended I was my own friend. My own dear, good friend.
I can’t believe it’s taken me half a century to locate this part of myself, but here it is, at last, some version of self-compassion.
And, then, in purple, in Jannus, after much meandering, I located my great orange car, and when I buckled myself in I leaned over and kissed the steering wheel.
Now, I had to find my way home.
• • •
About a month after the airport incident, I was at school, in my office with my student Kaley, who is in a wheelchair. We were going over her paperwork together.
At my university, students often have disabilities, and many of the disabilities are related to learning and to mental health. On the first day of class, students bring with them a packet of paperwork from SDS (Students with Disabilities Services), detailing all of the accommodations they require to be able to access and succeed in my class. All of this is mandated by law. I have to check boxes to show that I understand what I have to do, then sign and date the forms. Then the student takes the papers back to SDS.
As I read over Kaley’s paperwork, I asked her how the class was working for her, and she said fine, she didn’t really need her accommodations—which included extra time on tests, permission to leave the classroom at any point for no discernible reason, permission to stand up in the middle of class for no discernible reason—but that it was good to have them on file, just in case. Yes, I said. Yes, yes, yes. It’s good to have what you need on file. Just in case.
I love the bureaucratic language of the accommodations form. I love how everything is all neatly written out, down to the minute. I love the detail and the attention that is demanded by the forms. This student does not write by hand. Do you understand? Yes. Check. Yes, I understand. I love everything about this kind of intentional, careful communication in the service of learning and helping students learn.
After Kaley left my office, it occurred to me I needed to print out a blank version of these forms, fill out the very same paperwork, and arrange, immediately, a meeting with myself. To explain to myself the accommodations I need.
So I did.
I actually printed out the sheets and filled them out.
Heather needs more time to plan her route to both new and familiar places.
Heather needs someone to help her when she is lost. She may not be able to explain why she is lost. Do you understand? She doesn’t need to explain.
Heather, I wrote out, may become disoriented, frustrated, sad, and may even cry—this is normal when she is lost.
Are other accommodations needed?
I checked yes.
Explain on the lines below.
Heather needs extra time on her tests, and the world gives her many tests each day. She has a hard time recognizing people by face. She has a hard time recognizing places and scenes as familiar. Be aware that she needs gentleness in order to return to a state of mind where she can understand how to take on the next steps.
She needs both a narrative of directions and a visual map. She needs to both read and say aloud the directions. She needs extra time before departure to study her route.
This is all normal.
Do you understand?
I do understand.
Will you help her?
I promise to try to treat her as I treat my students and my beloved friend, with reverence, patience, and highest regard.
Confusion is, among many things, incredibly isolating. I have felt, for my whole life, so deeply, utterly other. Can’t recognize people. Can’t find places. I’ve felt alone, drastically so, because I’ve felt so different.
But after I formalized the Heather accommodations, I began allowing more time to prepare for any task that will include way-finding, including simple things such as driving to my friend’s house or driving to the dry cleaner and adding a stop to the paint store instead of going straight back home. Around the same time, a strange thing happened: I started hearing versions of I’m terrible at directions from more and more people.
My friend Alise dreaded attending a writer’s conference in our town because, she said, she would never be able to find her way around. Oh, I wanted to say, I can help you! This is a thing. It’s real, and it’s okay. You just need accommodations!
In advance of this writer’s conference, at which I was also presenting, I’d already started studying and researching and printing and highlighting paths, teaching myself the roads and connectors, the floor plan of the convention center and exactly how it linked to the hotel, and while I didn’t have time to go down a day ahead and practice, I did carefully plan out my work schedule so I could depart three hours before my panel started. Urgently, I wanted to tell Alise: you don’t have to be so worried and upset! You don’t have to live in dread. We can way-find and a find a way to let this problem not be a problem. Human brains don’t always know how to navigate the world—how could they, really?
But the newly converted must be cautious and quiet about having seen the Light. And so I was quiet, and after my initial invitation to join forces, I didn’t pressure my friend. I focused on the task ahead—three days of panels in multiple venues, two towns, four parking garages, many staircases, elevators, rooms and corridors and levels. I was diligent, studying the route from the Ashely Street parking garage to the convention center, the convention center to the restaurant where I was meant to connect with my colleagues and the incoming class of students, and so forth, drawing little maps of towns for myself, so like the ones I used to draw as a child that it gave me goosebumps. And I packed an entire trip satchel: water and snacks and maps, an umbrella. I even planned my route back home. It’s just as hard—harder—to leave a situation like the convention center in downtown Tampa and head home as it is to get there in the first place. I can write backward, but I can’t reverse a route.
Smooth sailing. I went slowly, and I went well.
• • •
A week later, my friend Don was forty-five minutes late to my house for our poetry group. He had been late by this same amount of time for the previous meeting. He stood in my driveway and asked me, three times, which way was east. How could that be east? he kept saying. And so that was west? he said, twice, like a stunned explorer or a mystified child. Don is a dean at a college, the author of books, one of the smartest men I know. And even with the help of GPS, he kept getting lost in my neighborhood, arriving in my driveway frustrated, surprised he was turned around, trying to sort out east and west.
I showed Don the east. I showed him the west. I felt like a prophetess and a goddess and a bit of a sham, knowing I’d struggle the next day to find my way from the restroom at work to my office down the hall. But east and west, at my home, are things I know because I live here and I like plants and care about light and growth and poetry, so I see that the morning light comes in the back of the house, so that’s east, and the harsh afternoon light comes in the front of the house, so that’s west. I wanted to pull him aside and have “the talk.” A little conversation about topographical agnosia and self-compassion. But it didn’t seem to be the right time.
And then, at school, I heard students talking about how hard it was to navigate Cooper Hall. “I always get lost in here!” Another friend complained about the “labyrinthine” nature of my neighborhood, and I remembered how long it had taken me to learn how to exit the isle where I live going out the back way, through Venetian Isles, and how I felt so wrong and dumb and ashamed not to know how to do it.
I have a severe disability when it comes to spatial relationships and perceiving direction. But I have come to realize, after living wholeheartedly for a while with my shiny new official accommodations—she needs more time—way-finding is hard, at times, for lots of people, even those who don’t have systemic spatial confusion.
Way-finding requires ongoing effort, practice, review. Some humans are excellent navigators because they automatically perceive and process visual clues provided by objects and landscapes. Others don’t rely as much on space and geometry; they create a holistic landscape out of stories, feelings, and memories in order to understand, access, and execute a route. Some people “just know” how to get across campus and back to their car. I have very limited abilities in any of these realms, but I have developed another set of skills.
I know how to remain calm. I know how to ask questions. I have my paperwork in order.
Shortly after I had my breakthrough regarding how to live better with my difficulties, I won a teaching award, and I thought, Oh, it’s not teaching I’m doing so well: it’s learning. I understand something of the process of learning, the very specific blend of work and self-awareness required. I’m good at printing out maps, tracing my finger over the roadways, getting to know the way via multi-sensory input—narrative directions, the visual map, talking out loud to myself, reviewing the route, just as I did in the Florida room when I was the young Maker.
When I won the teaching award, I asked a colleague to go with me to the ceremony, a friend who teaches face blindness in his psychology classes, a man who has taught at our university for many years. I needed help finding the auditorium where the awards were being given out. I needed help identifying the provost, the president, my department chair, and colleagues. And when I called him up to ask him if he could be my person, I thought about universal design—how every disability is really an on-ramp to universal human design. We all need help. We all have to ask each other questions to fill in what we do not know—everyone does. Just as wheelchair ramps assist adults pushing kids in strollers and people with troubled knees and scritchy hips, or trailing roller bags, any problem one person faces is likely a shared problem, forcing a question, an ask for help from a fellow human, and once you realize that, here comes the gentler world, the connected world, the world of contact.
I will never forget that man in the airport who walked me to the sliding doors that led to the walkway to the parking garage, that man who sent me so kindly on my passage, through that portal, changed, really, forever—he helped me find my way not just to my car, but to myself.