Lost…In…Space! Living with Developmental Topographical Dysfunction

Please welcome my guest, Judith Shaw, writing on a little-known topic. Judith writes from first-hand experience with Developmental Topographical Dysfunction—a disorienting condition where people can get lost even inside their own houses.

BETWEEN COVID-19, the chaos in Washington, and the fear that nothing will ever be normal again, it feels like I’m constantly running in circles. 

Running in circles is nothing new. I’ve been lost for most of my life. 

Before you say it, this is so not about a bad sense of direction. It’s an honest-to-God neurological deficit called Developmental Topographical Dysfunction or DTD. My brain can’t map. Apparently, it never learned how.

I can—and often do—walk into the laundry room five or ten times a day, when what I’m looking for is in the pantry. And that’s on a good day.

Topographical Dysfunction, with one D, was discovered first.  By definition, TD is the result of an injury or insult to the brain: brain cancer, or perhaps a blow to the head. The part of the brain that maps is damaged. TD is physical and permanent. 

Okay, so where does that leave us? What about people like me who cannot map but have never suffered a brain injury?  

It took a long time to convince scientists that what we now call DTD exists at all. When forced into a corner, neurologists gave it a name. Our invisible, nonphysical mapping deficit is now called Developmental Topographical Dysfunction. A glitch in the development of the brain. 

DTD has not been the focus of much—if any—scientific research. After all, who’s interested in a bunch of normal people who are chronically lost?  

Well, I’m interested, and I assume other people living with DTD are interested, too. The surprise is how many people can’t map. Many more, I think, than the scientists expected. 

Not too long ago, when newspapers began to print interactive human-interest articles, a story in The Manchester Guardian about a woman with extreme DTD inspired several hundred passionate responses.  

 This one is typical:

My sense of direction is poor to the point of being ridiculous - far beyond what most people mean when they say they have a poor sense of direction. I have to do even the shortest journeys 10-20 times before I can remember the way, and I can easily get confused going from one room to another in a large house. Directions are to me what words are to the severely dyslexic. Is this a scientifically-recognised problem? 

— Joanne Sheppard, Salford, England

 Click on this link to read them all:

People from around the world writing about their “directional dyslexia”

The severity of DTD can vary widely. The woman in the Guardian article had a very bad case. She drove past her own house without recognizing it so often that she placed an enormous plastic lobster in her front yard. She might not recognize the house, but she could recognize the lobster.

Thankfully, my DTD isn’t as bad as that, but it still requires management: Every time I arrange to meet someone, I leave an extra half hour for contingencies and never go anywhere without a book. If I’m going somewhere complicated, say a multistory shopping center, I either bring a friend or stay home. 

Restaurants are a special favorite. Returning from a trip to the Ladies, I’ve landed in more restaurant kitchens than I can count. The people at my table always think it’s hilarious.

Getting lost in a restaurant is annoying, but most people have done it at least once. It’s not a big deal unless it happens every time. Unless, like mine, your brain can’t map.

My spookiest DTD experiences have come when driving somewhere I’ve been a hundred times. All at once the familiar road looks like nothing I’ve ever seen before, and I don’t know where I am. 

The first time this happened I thought I’d entered The Twilight Zone. These days I shrug, turn the car around, and retrace my route until I find something that looks familiar. Then I turn around again and go on my way. 

There’s a limit to how upset I can be when I find myself in terra incognita. It happens too often. Anyway, that’s what the extra half hour is for. The book is useful when I arrive at my destination without incident and have a half hour to fill. 

The Guardian article’s hundreds of respondents brought many DTD sufferers out of the shadows and perhaps even pushed researchers to take it seriously as a disability.

For me it was evidence that I wasn’t stupid, crazy, or alone.  Knowing that there are more of us like me has changed my life.

 - - - - - -

JUDITH SHAW is a writer, a blogger, and the author of Charley's Horse. She has a passion for language, travel, and animals. Her first horse and the love of her life was a bay Morgan named Tom Thumb. Judith lives in Great Barrington, Massachusetts, with her husband, Ron, and Tilly, her Jack Russell terrorist. You can read Judith's travel stories on her Globetrotting page.

Republished with permission
Originally published as Lost…In…Space! on Judith's blog