In How is it, people tell us, well, what it’s like to have experiences that many of us have never even imagined. In this post, we spoke with Maggie McCart, an administrative assistant at a university in Illinois, who suffers from an extremely rare condition called prosopometamorphopsia, which causes patients to have a variety of wild hallucinations when they look at someone’s face. If you looked through McCarts’ eyes, you’d experience a world where faces look like they’re made of tree bark, or are unnaturally contorted, or, perhaps, completely swapped with a mythical creature. We asked McCart how he goes about living life while looking through a fun house mirror.
I have always struggled to recognize people’s faces. Sometimes even mine own expensive It’s been going on for as long as I can remember. It wasn’t like I just woke up blind in the face. As a child, I remember being at the mall, looking in the mirror with a bunch of friends, and not being able to identify which reflection was mine. As I got older, the problem got worse. Sometimes a person can look exactly like someone they used to know, maybe even someone I haven’t seen in over a decade. Say I go on the bus and look out the window. There, on the street, will be a girl I went to school with in the third grade. Except it’s not them, they’re just wearing the face.
Other times, these disorders can get really weird and hallucinogenic, like a bad acid trip. The skin texture of a face may change, or their nose or eyes appear stretched and exaggerated in a grotesque, plastic way. Sometimes a person’s face and mouth are replaced by geometric shapes, triangles, hexagons, etc. When this happens, I call it going to Picasso because it reminds me of his cubist paintings. I’ve had faces made of potato skin or tree bark, like the talking apples of wizard of oz And I’ll never forget that one time I looked at a manager and he looked at me non-jokingly, the head of a dragon, with matte black skin. (Luckily, this distortion has only happened once.) The condition I’m suffering from is called prosopometamorphopsia (I know I can barely pronounce it myself). Those with it sometimes experience strange visual hallucinations when looking at someone’s face. His extremely rare, only 75 cases have been reported, and I’m one of the unlucky ones.
Prosopometamorphopsia is sometimes referred to as demon face syndrome. No one knows what causes it, in general, the disorder is related to various brain traumas and for a long time, I could not get a diagnosis. My first interactions with doctors were not helpful. Years ago, I explained my symptoms to a neurologist. I reported what I was seeing and they scanned my brain and found nothing suspicious. The neurologist said something like, Well, there’s nothing wrong with your brain. And I thought, I beg to differ. But then again, it’s not like they can see with my eyes. It’s not a simple situation, like asking a doctor to investigate a skin rash.
So for most of my life, I did my best to ignore the symptoms and go about my day. I learned to recognize people by their shoes, their clothes or the way they walk. When I’m on a trip with friends and I’m separated from them, I stay where I was and hope they find more than leaving with someone who just appearance like them I could manage. But my prosopometamorphopsia became a problem at an old job at an AV company, which was full of men in their 20s, who mingled. I think I was talking to Tim, when really I was talking to Joey. So I visited an ophthalmologist, who deals with vision problems, and they basically told me that all of these problems were just the result of trauma, and because of a rough childhood, I struggled to look people in the eye. That was true. I find it hard to look people in the eye. But when I did, in the past, I could count on at least seeing someone real face
Fortunately, my sister, who works as a biologist, was the person who told me that I might be dealing with a bigger failure in my brain. We went down the prosopometamorphopsia rabbit hole together, and that’s how I first came into contact with Brad Duchaine. Duchaine studies brain science at Dartmouth and has done a lot of work on my specific condition. In our first call, he said: What are your symptoms, what are you going through? Duchaine was the first person I told about the dragon. It’s not something that comes up in polite conversation, and I know it can make me sound like I’m on drugs. But he said: Yes, this happens. I no longer felt alone. I said, wait, other people are dealing with this, too?
We have been working together since the year 2022. Hell sends me pictures that I will look at, and Hell asks me how they look to me, and compares it to other people who have prosopometamorphopsia. Hell makes his research assistants make certain faces or turn a certain way, and I’ll let them know if they distort me. It’s very hard to describe exactly how these hallucinations appear, but sometimes I can feel my brain displacing my inner thoughts into my visual field. For example, once I was going to see a doctor and when I looked at his picture, it reminded me of Mr. Weatherbee, from Archie Comics. After entering his office, his boss was replaced by the cartoon face of Mr. Weatherbee, cheering against the background.
I’ve never been able to pinpoint the cause of my prosopometamorphopsia, and it doesn’t trigger with every face I see. I was diagnosed with autism a few years ago and Duchaine has told me that the disorder can be a side effect. There is also what I like to call the Sulfa incident. Years ago, to treat a strange cyst on my leg, I was put on a sulfa antibiotic that my body reacted badly to, and was later told I might have a sulfa allergy. The point is, then, that my prosopametamorphopsia worsened beyond face blindness and into Why does this person have a hexagon on their nose? I have found a few ways to relieve these symptoms. Sometimes sitting down and drawing simple doodles of human faces helps, as a way to remind myself of what people are like.
But you know what? At this point, the distorted faces I see no longer scare me. I’m used to it. I have made peace with him. Yes, the first time I saw that dragon was really terrifying. Stuff like that would make me gasp. But now I can relax, take a deep breath, remember that it’s just my stupid brain acting. People don’t look like dragons, and thank God this
#rare #disease #demon #faces #fun
Image Source : slate.com