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Living with Prosopagnosia: How could you not know?

How can you not realize you have face blindness?

How could I know?

It's 1969, downtown Orlando, Florida, it's our kindergarten recess on a warm winter day. The kids are all in coats. The redheaded boys are playing war. The dark-haired boys, whose hair I associate with crow feathers, run around, swing, play war. The blond girls are playing house with the curly redheads. I hide behind the vine that grows in the sunny part of the courtyard. I want to be asked to play. I'm never asked to play. I would be terrified to play. If someone asked me, I wouldn't know who was asking. I can't find my teacher unless she's wearing the daisy print dress. On this day, like so many days, I cry. Like a baby. I hate myself. I hate my school. I love my teacher. But when we are told recess is over, it's time to line up, I do not know which is my line. I do not know my right from my left. I do not know how to add, or tie my shoes. Everything I don't know is a big pile and I cry, and cry, and I don't know why.

My mother is called to the school. There's concern. I am too sad at school. My mother chastens me at home. I've got to try to not look so sad. I'm attracting attention. "If they know what goes on in this house, they could take you away from me. You don't want that. I have seen those places. I know you don't like it here, but you are better off with me." I have to perk up, she says. I have to try to make a friend. My mother is beautiful. She has brown hair in thick waves, and a slender body, and long arms, delicate hands. She makes cakes, sews my dresses. Sometimes, she sings crazy little songs from the 1930s. I adore my mother. I want to make a friend.

But no one can come to our house. And I am not allowed to go to anyone else's house. She wants me to make a friend. But not really. Pretend to make a friend. I can do that. I can be who she wants me to be and not be her, both at once.

As I get older, and my father leaves us (that's a whole other story, harshly infused with the chaos and confusion of mental illness, alcoholism, cross-dressing, a cabinet of abuses), and my mother's breakdowns become debilitating. I develop pica, then mutism. We're poor, then really, really poor. My mother insists I walk on my knees whenever I am in the house, to save the carpet. The doors and windows are heavily draped, barricaded, nailed shut. The furniture is covered in sheets. Don't touch, don't enter, don't leave. There is so much danger everywhere.

In high school, I skip class and head to the public library. I study dusty psychology books on the shelves. I scan medical manuals and textbooks. I am looking for myself. What's wrong with me?

Even if you grow up in a typical household with typical dysfunctions-some addictions, some money problems, some weirdness, some sketchiness around the edges-I think it would be almost impossible to self-diagnose face blindness. Moving from childhood into adulthood, the task that preoccupies us - the "normal" task - is coming to know and trust our own perceptions of the world. If you grow up in a house that's mostly chaos, day after day, night after night, that task is monumental: it's a life's work to understand what it is you know and what it is you do not know. There is no yardstick: you have to make one from scratch. The disorder is, in this way, a gift, a potent physical manifestation of an essential human question.

My teachers worried about my extreme shyness. My mother labeled me "emotional" and my father believed I was "ruined mentally by your mother." Ordinary social interactions left me feeling overwhelmed, stupid, wrong, weird. The only thing my family and I seemed to agree on was that I was crazy. There was no possible way to know prosopagnosia for what it is, given the chaos in my childhood home, my difficulties at school, the lack of knowledge about face blindness, my isolation. We had no television, no regular contact with extended family. My mother changed my school every year, so I thought it was quite normal to see those around me as strangers most of the time. How would I be able to know my fusiform gyrus, part of the temporal lobe in Brodmann Area 37, was on the fritz? I had never even considered the possibility of a "face recognition area" in the brain. I, like most lay people, didn't even know the difference between vision and perception.

More important, from a pyschological standpoint, I didn't know anything about my mother's illness. And what I knew, I'd vowed to keep secret. I knew she was fragile. I called her quirky. These words she herself used. They seemed the right ones to me.

In the end, it was chance -- a chance encounter with an ex-boyfriend, followed by a shocking visit to my quirky mom's house when I went back to Orlando for my 20th high school reunion -- that finally started me on the path to a true diagnosis.