I was six when I first remembered getting really lost. The cluttered streets, loud chatter and parents nowhere to be seen. I felt like I was drowning in the crowd, like I was in the stampede in The Lion King where  Mufasa died (my favorite movie at the time). 

I remember scouring the streets, looking for a “nice mom” as I’d been taught, to call my mom because I was lost. I recited my mom’s phone number from memory.

Little did I know, my mom was only about 10 feet away from me, buying fruit at the stand over at our local farmers market. I did, however, feel very, very lost. I had been completely disoriented, feeling like my mom could have been miles away, and that I was never going to find her again. 

Three years and a bunch of “Alma’s lost” stories later, my grandma, and favorite spatial psychologist, sent me an article about a condition called DTD, or Developmental Topographical Disorientation. 

According to Science Direct, DTD is defined as the lifelong inability to orient in extremely familiar surroundings, despite the absence of any acquired brain damage or neurological disorder.

Based on current research, the disorder is genetic and caused by issues with the hippocampus, a brain region responsible for memory and spatial cognition. According to Guissepe Iaria, the author of the first paper on DTD published in 2009, the neurological issue that causes DTD is a lack of connectivity between the hippocampus and other brain regions that have to do with spatial orientation.

“Why DTD is a dysfunctional issue, is not because the hippocampus is not working properly, not because the retrosplenial cortex is not working properly, or any other regions are not working properly, they’re working fine,” Iaria said. “The problem with DTD is that because spatial orientation is a very complex behavior that requires the integration of different brain regions and different kinds of information while you navigate.” 

According to Ford Burles, a co-author on some of the more recent papers on DTD with Iaria, a main difference between someone with DTD and someone with a more typical “bad sense of direction” is people with DTD tend to get lost in very familiar places.

“We expect individuals with DTD to be getting lost in places where you would expect they would have figured out…regardless of their level of attention, just seem to never build that implicit sense of direction,” Burles told me. 

I proceeded to tell him how much I related to what he was talking about and how I still frequently go the long way around a circular building at my school, where I have navigated to classes every day for the last four years. 

While I can easily memorize the street names to turn on, I still often end up turning the wrong way on the right street because I have no sense of the general direction that I need to go in.

 Often, I have to drive to my house getting from one place to another because it’s the only way I know how to get from point A to point B. 

“If you get directions, someone can just give you a list of behaviors, like, head straight, see this, turn right,” Burles said. “Now that has spatial words in it, but there’s not the map. … So, those people with DTD can still do the route-based finding, do A, do B, do C, D, but it’s that intuitive … mental representation of space that’s [hard].” 

For years, when people would get confused why I didn’t know my way home, I would defend myself saying, “I have a bad sense of direction,” trying to brush it off and hide how stupid I felt. If I brought up DTD, people would ask if I made it up or if I was self-diagnosed. So instead, I laughed it off and found ways to compensate and avoid it ever coming up.

DTD is not a well-known condition partly because it is a developmental condition that people are born with, making it hard for people who have it to even recognize it themselves. 

“We have estimated about 2% [prevalence of DTD],” Iaria said. “…Why they don’t come out with this? Well, likely because they do not know about this condition. Also, because being a developmental condition, people do not even know what it means to be different.”

However, the older I got, the more apparent my DTD became and the more excuses I had to come up with. I always felt like people were mad at me for not knowing which way to turn, but it felt so out of my control. I didn’t understand why I was being blamed for the way my mind worked.

Reading and hearing more about DTD felt liberating. There was an explanation for my “bad sense of direction” rather than it being my fault for not paying attention. I felt relieved I wasn’t the only one who lacked an assumed ubiquitous skill. 

Of course, as I got older, I also came up with good ways of compensating and figuring out how to get around without having to talk about my DTD. I memorized the big streets in town and all its cross streets in order. I memorized the routes to every place I ever needed to go and used mnemonics to remember which way to turn on which street. I knew that to get to one of my friends’ houses, I had to turn right on Bryant because Bryant has an “r” in it.

I began to shift my focus on the skills I was learning to navigate, rather than what abilities I lacked. 

I still frequently think about a moment when I was in 7th grade biking to my best friend’s house with another friend and was supposed to be showing her the way. At one point, I realized I had taken a wrong turn and we needed to backtrack just one block to get back on track and simply turn the other way. I told my new friend at the time, “No it’s fine we just need to go this way now.” 

She, however, was convinced we were lost, that it was my fault and that I was not going to be the one to fix it. She insisted on calling my best friend, who was disappointed I had lost my way to her house, and made her pick us up from the street corner we were at and take us to her house. 

It was then that I realized I had a different definition of being lost than most. 

For my friend at that moment, once we had turned the wrong way, we were lost. For me, however, I was exactly where I needed to be in order to figure out how to get to my friend’s house. It may have been a longer route, but it was my way of finding my way around. Wrong turn? What does wrong mean anyway? I took a guess, saw the cross street, realized my friend’s house was the other direction, and knew to turn back. 

I now use my own definition of being lost as a way to stay calmer in moments of stress and to be more present in where I am. If I never know where I am, there is nowhere to be but exactly where I am. 

For me, life is more a progression of events where at each turn, you learn something new to help you find where you want to be.

 Now, as I go off into the world with many more unfamiliar places than I have seen in the last 17 years of my life, I’ve decided to try and see how much better I can get at navigating. I want to try and distance myself from the comfort of simply being a bad navigator.

When I asked both Burles and Iaria about this possibility for gaining the mental map that most people have, they told me about a video game they have developed to try and help people improve their navigational skills.

“We tried to build this little town, a virtual town, that people could explore,” Burles said. “And the thought process was that they would get this opportunity to practice their spatial skills in a way that’s safe, where there’s no risk of getting lost. So it was basically using a video game model.”

Iaria and Burles have created a whole website to learn more about topographical orientation skills called gettinglost.ca. They have worked and done research to make the lives of people with topographical disorientation less confusing. I go forward in my life forever grateful to them, holding onto the skills I have learned through managing my DTD and continuing to try to grow my map of the world.   

The following are two examples of extended routes I have taken within the bounds of the comfortably small city I have live in my whole life.