LOST WITH A CAUSE
People with rare neurological condition unable to determine exactly where they are
I knew I was safe. I was mere blocks from where I’d started my walk with Otis, the beagle I was dogsitting. That knowledge didn’t matter, though; fear and adrenalin pulsed through my veins and I began to sweat profusely, which only added to the confusion in my brain. I had no idea where I was, and my surroundings looked completely unfamiliar. It was as though I’d been dropped into the middle of a foreign land.
Fortunately, a woman who approached to greet Otis knew his owners and their house. She was kind enough to walk me back. We were only four blocks away.
I was 13 when this happened, and although I knew from a much earlier age that I had more trouble than most finding my way, it was easy just to tag along and follow others. However, this experience made me realize there was something wrong with me. My life was forever changed.
What if that woman hadn’t happened by? Would I have had to knock on someone’s door and ask to use their phone to call the police? What would I tell them? How could I expect them to return me to a place if I had no address or description to provide?
I have developmental topographical disorientation, or DTD. This means I can’t form a mental map or image of my surroundings. Unlike most people, I have no internal compass. At 61, I still get lost, and it’s every bit as confounding and frightening as it was all those years ago.
“When you move around, you do so by monitoring a lot of information, you look at landmarks and you try not to bump into walls,” says Giuseppe Iaria, an associate professor of cognitive neuroscience at the University of Calgary. “There is all this processing of dynamic information. You use this to form and constantly update a cognitive map of where everything is around you.”
Brain lesions sometimes affect the orientation process, producing a condition called acquired topographical disorientation. Those of us with DTD, however, show no evidence of brain damage.
“In other words, there was no brain injury — no car accident, no brain tumour or stroke,” says Iaria, who developed the DTD diagnosis and first wrote about it in 2009. “They just didn’t develop certain skills. We have found that these people who have this condition, in which basically they get lost every day in the most familiar surroundings, have been this way all their lives.”
Brain scans of resting DTD patients have shown decreased communication between the hippocampus and prefrontal cortices, both locations vital to spatial orientation. The two don’t work in sync with one another, which impairs navigational abilities. Iaria says this condition may affect up to two per cent of the population.
DTD was brought to light by filmmaker Michelle Coomber in the 2010 documentary Lost Every Day, about Sharon Roseman of Denver, who was unable to find her way around her own apartment.
Roseman had kept her condition a secret for years after receiving several wrong diagnoses, including multiple personality disorder. She eventually confided in her brother, who was instrumental in her contacting Iaria. She and hundreds of others have since participated in many studies, all of which concluded there had been no stroke or other kind of damage to their brains, memory or intelligence.
I remember having to adapt to my condition once I started driving. I would either follow a friend who was in a car ahead of me or I would ride as a passenger to parties and other functions. I was terrified if there was no one to accompany me when driving, even if only to a nearby store. Often, I wouldn’t return for hours.
I don’t know whether I’ve spent more time hopelessly lost within a short distance of my home or trying to explain to people why I cannot follow a simple set of directions. They cannot understand how it’s possible to be completely and utterly lost.
While everyone experiences being lost at times, that is significantly different from being completely disoriented in what should be very familiar surroundings. I have spent countless hours on backcountry roads not having any idea where I was.
Friends and acquaintances often laugh politely when I hesitate to meet somewhere because I may get lost. “It’s right down the road! You can’t miss it: That big red house is right on the corner!” Actually, with DTD, adding landmarks to an already confusing route makes matters only further confounding.
I now offer an analogy when pressed to explain my problem: It’s comparable to asking a blind person to see the colour yellow. “It’s right in front of you, you can’t miss it: It’s bright golden yellow!”
Because so little is known about DTD and because most of the population can easily navigate with their inner cognitive map, there’s an “idiot” stigma attached to it. Those of us struggling with this disorder are often left with feelings of anxiety, depression, isolation and selfdoubt, so we keep our condition to ourselves.
There is no cure for DTD, but research is ongoing. I share my story in hopes of reaching others with DTD, especially those who have it but are unaware there’s a diagnosis. I find comfort that there is a medical term and diagnosis for my condition and that it’s the focus of much-needed research.