Imagine being unable to recognize the faces of the most important people in your life — even your own husband. Every social interaction becomes a minefield if you can’t tell your best friend from your worst enemy.
That’s what life is like for people with prosopagnosia, a neurological disorder that prevents face recognition and impairs other abilities, such as following directions and telling left from right. Once thought to occur only in rare cases of stroke and brain damage, the disorder is now known to affect up to 2.5% of the population, typically as a hereditary disorder that starts in childhood.
Heather Sellers, author of a new book called You Don’t Look Like Anyone I Know (Oct. 2010, Riverhead), has had prosopagnosia for as long as she can remember. But growing up with a mother who had an undiagnosed case of schizophrenia and a father with alcoholism, her condition remained undetected. Her compassion and insight make what could be a grim “misery memoir” into a compelling investigation of a complicated family reality. (More on Time.com: See more from the “Mind Reading” series)
I recently talked with Sellers about the book.
What are some of your more memorable experiences of forgetting a face?
I’m on a date in college. I go to the bathroom and come back. Lots of people with prosopagnosia also have topographical problems — we get lost easily. I sit down at the wrong booth. I decide to be daring and sit next to him on same side. So all of my visual cues are scrambled. I can see that it’s clearly not going well, but I’m thinking that it’s because there was so much social risk in the move I just made. I always find explanations for why a person is asking me, “What are you doing?”
[Of course, I’ve sat down with the wrong guy.] And my actual real date comes up to the table and he’s pissed and confused. That kind of thing happens to me all the time. I would go up to the wrong man regularly thinking it was my husband, and I put my arm around and it turns out not to be him.
What is it like not being able to recognize people? How do you “know” them?
It’s like dyslexia. It feels like a learning disability. I know what a face is, but it’s really hard to read faces. [With dyslexia] you know what the word is, but you are going a lot more by context and takes a lot of work [to figure it out]. It feels like walking uphill into the wind. It’s like a parts vs. whole thing. I can’t read the topography of a face, the tiny gradations that make a difference. (More on Time.com: Psychology vs. Psychiatry: What’s the Difference, and Which Is Better?)
You grew up in a very strange household: your mother covered the windows with blankets and made you walk on your knees; your father drank constantly and wore a bra and pantyhose under his clothes. Why do you think it took you so long to realize something was wrong at home?
That’s such a complicated story. I knew something was wrong. I knew our house was very different from other people’s houses. But when you’re a kid, you have intense loyalty. You can’t underestimate kids’ loyalty and love for their family.
How did you actually discover that your mom had schizophrenia?
This is the function of high-school reunions. You go home and see that the story you told yourself about your childhood [is wrong]. My high school boyfriend [made an offhand remark at the reunion]. He said, “What was going on in your house? It was like a war zone. Did your mom have paranoid schizophrenia?”
I thought he was an a–hole. [But then I began to think], “Oh, my gosh, I might have gotten this really, really wrong.” When I got to my mom’s house, I started to see it through his eyes. [At the time], I was married to [my now ex-husband] Dave [and had brought him and his kids to meet her]. I started seeing things through his eyes and, crucially, through the eyes of his boys. I couldn’t let them be in that house so I started thinking about what it was like for me to be in that house.
When did you realize that you also had a problem that was affecting your social life?
As a kid, I knew something was wrong. I went to neurologists and said, “I can’t see right. Something’s not working.” When I started driving, I had lot of problems with left and right. I’d get lost blocks from home. But they would say there’s nothing wrong with your brain. So I thought I was crazy and I [thought it must have something to do with my mother]. I was reading about schizophrenia in a psychiatric textbook. I found the words “face recognition.” All the bells went off and I knew that’s what I had [problems with].
But I was reading about schizophrenia, reading about my mother. It took me a long time to find prosopagnosia, to tease it out from the kind of recognition problem people with schizophrenia have, which is completely different.
I was amazed that no child welfare authorities ever discovered that your home was split between alcoholism and schizophrenia.
My mom’s entire life was devoted to not getting caught. She’s really good at it. Her brain is devoted to making it work. (More on Time.com: Special Report: Kids and Mental Health)
What about your father?
It was harder for my dad to dodge the authorities because he doesn’t have paranoia. He was out there in the world. But it was Florida in the 1970s — there was a wide range of “normal” in that life. And my dad is incredibly bright, wild, a fascinating, complicated person.
What would you say to a child who is growing up in a situation like yours?
It’s not as simple as remove the kid and it will fix it. I don’t have a message or solution. My own story is less about diagnosis and more about investigating: how do you love flawed people? What does that look like?