How do you do that?
I’m pretty comfortable with radical contradictions. I can love really flawed people. But I couldn’t tell a kid how to do it and I know how hard it is.
Reading the book, I was also astonished by your reluctance to tell people that you had prosopagnosia. I kept thinking that it could have made your life so much easier.
My therapist kept telling me that. He got frustrated with me, too. He kept saying, “You’ve got to tell people. Why can’t you tell them?” There was that whole childhood thing of being loyal to my mom and not telling people the things that are weird.
And I have to say that a lot of people don’t get it. People don’t say, “Oh thanks for telling me, that’s helpful.” They say, “Don’t worry, I’m terrible with names, too.” Nope, it’s not that at all.
I was also surprised that you had not come across Oliver Sacks. His bestseller The Man Who Mistook His Wife for a Hat includes a case of prosopagnosia.
I had always known his work but I never realized that that’s what I had because he was writing about the brain and not about mental illness. I didn’t recognize myself in that material.
You distinguish between neurological problems like prosopagnosia and mental illnesses like schizophrenia, but they are really both brain problems.
Yes. I was trying not to be my mother.
Even after you discovered the condition, neurologists told you you didn’t have it. Was this because they still believed you could only get it from a stroke, and that there wasn’t a hereditary or childhood form of it?
They said it’s too rare. That’s still common in the medical community. But how many people now being diagnosed with Asperger’s really have prosopagnosia? (More on Time.com: Amnesia and a Camera: Photos as Memories)
Do you mean that people who can’t recognize faces might be seen as autistic because they withdraw socially?
I believe many of them have whatever this syndrome is. It has huge devastating social consequences. There are two [ways that people usually respond to it]: some are massively introverted and seem like they have Asperger’s. [But] others, they’ve never met a stranger. I’m super-outgoing and super-friendly. And I’ve got huge hair so I’m really easy to recognize. Everyone knows me and I know no one.
Do you think your mother’s schizophrenia is somehow associated with your prosopagnosia?
My therapist thought that it might have to do with my mom’s inability to mirror other people, to make faces appropriate to the baby’s mood. There’s a critical period [a time when the brain needs specific input to develop right] where the face processor gets laid down at six to eight weeks. When babies have cataracts and they can’t [remove them in time], they can develop prosopagnosia because they didn’t see faces at the right time.
What has been helpful to you in dealing with it?
Joining an online support group, that changed my life. That’s the only way I was able to come out. I recommend the website faceblind.org.
People with autism spectrum disorders and other conditions often say their conditions — their way of seeing things — have some advantages. Have you found this to be true of having prosopagnosia?
The biggest one is that ability to live in uncertainty — that’s incredibly useful for any human on this planet. I’m able to sit there and not know for longer than most people and that has everything to do with why I became a writer. I can also get work done because social stuff is such a pain. That’s hard for most writers.
[Another thing] I can say is that I’ve always been attracted to the strange, disfigured, out of the ordinary [looking people] at the far end of the bell curve.
Perfect faces are impossible. Beauty is the sum of the perfect average so more beautiful people are harder to recognize, testing bears this out. I think that’s a point of honor for me. I like people who look different because I can find them more easily. [So] I have a capacity for loving flawed people and a healthy disregard for surface beauty.
More on Time.com: