I wrote about this before, back when this blog was new. My first post here, the last thing I wrote for my book. Hi, I’m Jeff. “Wow, you sure have a lot of problems!” This was my former boss. She spoke with exclamation points. She ticked them off on her fingers: “Vision! Hearing! Tourettes! Face-blindness?” I’m not sure she believed that last one.
Have you heard of it? Prosopagnosia. The inability to recognize faces. I’m a mild case. When I see people frequently, I do pretty well. Like I’ve got work pretty much covered. At least in my library, the big one. Take the smaller branches, scramble the employees, I’d be lost.
My biggest failure was with Sophie, my own daughter. Not now, I do fine now, but as a baby. She looked like all the other babies. Picking her up at daycare stressed me out. People like me use cues. Clothing, hair, size. All the babies start bald, and they’re all tiny. Clothing worked. I knew her outfits, I bought them all. But accidents happen. Seriously, horrible diaper blow-outs, overactive drool-glands, a tantrumy meal, Sophie wound up in one of the public outfits, the ones the director bought at Goodwill. When I arrived, I couldn’t find Sophie.
Before kids, Susan and I got heavily into swimming. Because we lived in DC, the only pools nearby topped out at fifteen yards long. Stroke, stroke, stroke, turn. We drove deep into the Maryland suburbs to visit an aquatics center. Three pools there, the big pool, fifty meters long. One night as I got off the highway, a car t-boned the minivan directly in front of me. I ran from car to car asking if everyone was alright. Dazed stares, no one answered so I called 911. Before I left the scene, a cop took my statement. Months later a subpoena arrived. In court, the judge asked me to identify which driver that caused the accident. One was Black, the other white. I couldn’t answer his question.
Countless times walking home from daycare, I pulled up the back of Sophie’s shirt to make sure I got the right baby. She had a birthmark on her lower back—in the spot where a tramp-stamp goes. We called it her on/off button. A round, dark stain on her skin, not raised or depressed, just colored, the size of a dime. Perfectly centered, like someone put it there on purpose. It was impossible not to think of a button, all our friends said the same thing. We joked it was how we got her to sleep at night.
As Sophie got older, we told her about her button. Family-lore. Just something you know. Sophie has an on/off button. Right there, just above her bathing suit bottom. Yes, I even used it to recognize her as a preteen. A group of girls at the swimming pool, Sophie’s the one with the button. The whimsy of the on/off button is a small reminder of the hundreds of things I love about Sophie.
When I was a kid, my father told me I was born with a tail. There’s a dimple on my coccyx bone. A deep one, like they cut something away in surgery. I can feel it when I prod the base of my spine, even through a pair of jeans. From my earliest memories, my father told me this, I was born with a tail. Like Sophie and her button, it’s something I’ve always known. Not once in my life has my father suggested he’s joking. After Sophie popped out with her button, I asked my father again. “Yes, you had a tail, they cut it off when you were born.” I still have no idea.
Sophie’s home on college break. Besides hostessing at a local ski resort pub, she’s visiting doctors. All of them. Tomorrow, it’s an eye appointment. Today, the dermatologist. Sophie had a freckle on her cheek that concerned her. “The freckle’s fine, but that birthmark is a little iffy.” They cut it off. They cut off her on/off button and sent it to a lab. I’m not overly concerned about the biopsy, the button hasn’t changed since she was an infant, but now it’s gone.
Sophie couldn’t care less. It’s just something weird her parents talked about now and then. It’s meaningless to her. To even see it, she needs two mirrors. And now it’s gone. I find it difficult to not think of this as a bit more of her childhood that’s disappeared. Sophie became an adult at college. She’s confident and independent. Assured and intelligent. And now she’s missing the one enduring element from her childhood I expected to last forever.
Photo by Russ Ward on Unsplash (I don’t even have a photo of the birthmark)
The Other Stuff 
I can relate to the anxiety about recognizing faces, but for a different reason: from a young age I was nearsighted but no one realized until I was in fourth grade. I had already developed the skill of remembering what people were wearing so I could identify them from a distance, when they were otherwise just blurry faces. Even after getting corrective lenses, I retained that habit of noting clothing.
Sophie’s on/off button, and your low-spine dimple? Quite possible – especially in your case – that they’re a sign of a slight neurological miscue in the womb that in the vast majority of cases have no impact on one’s life. I grew up with a “birth mark” in that exact spot on my spine, just below the bikini bottom line. I had both a slight dimple and a small patch of baby-fine hair that grew there. At age 13 I started shaving it off, and have ever since. Fast forward to my late forties, having some orthostatic headaches after a fall, and come to find out I have spina bifida occulta and a tethered spinal cord. A dimple and/or hairy patch in that area are common signs. Not sure if Sohpie’s on/off button is the same sort of sign, but wouldn’t be surprised.
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spina bifida occulta: Great, one more rabbit hole to dig down. I don’t suppose it causes dizziness??? That’s interesting about your vision. I think that would be a pretty similar sensation. I’ve read that one of the other symptoms of Prosopagnosia is a missing sense of direction This is me to a T. I have a hard time getting from point A to point B and I’m a disaster in the woods. Thank god for GPS.
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Pro-whatever, face-blindness is common amongst people on the Autism Spectrum also.
I have a horrible memory. I recognize people fine, I just can’t remember their names or where I know them from.🤷🏼♀️
It hasn’t been much of an issue since I became disabled. I am basically a hermit and only see people at the store or my doctor’s office.
I’m sorry you lost Sophie’s button, but don’t worry about losing your daughter to adulthood. My daughters are my friends. I actually like them better as adults because I’m not responsible for them anymore. All the fun, none of the responsibilities 😉
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I’ve read about the autism link, and I’ve looked hard for Tourette link (which is absent). I always have this underlying assumption that I’m on the spectrum. Just one more piece of “proof”
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An interesting ramble, as always I enjoy your posts Jeff.
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Thanks Kate. I tried to stay on-topic, or at least relevant. Sometimes it’s just so hard.
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Haha don’t let structure get in the way of a good story
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😦 sad for the loss of such a special button.
And as someone stated above, spina bifida occulta. Usually presents as a dimple or hairy patch where the tailbone didn’t get wrapped in the usual layers entirely before birth. Sometimes just there, sometimes a problem as a grownup. Usually just a fun fact.
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Spina bifida, or maybe I was just born with a tail. Susan told me over the phone. Felt like someone stole my car.
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I have myopia and astigmatism, neither of which were picked up until I was 12. And I was an undiagnosed autistic until I was 60. I am absolutely hopeless at recognising faces and rely on other clues such as manerisms, gait and context to recognise people including my siblings, the wife and my chilldren and even my parents.
Instead, I recognise people mostly by their voice. It took me until my twenties before i understood why peeople would identify themselves when they telephoned me but not when they met me on the street. It didn’t make sense until it dawned on me that most people rely on visual clues rather than audio clues to identfy each other.
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Wow. I guess we’d put you in the severe Prosopagnosia category. Something that strikes me about this and other neurological disorders is that as the person suffering from the disorder, there’s no way to tell you’re different from the next person. I always just told myself I had a bad memory or beat myself up for being too self-centered to remember others. I never really thought about voice as a cue. I don’t think I’m all that good at recognizing voices, and now that my hearing sucks, I guess it doesn’t matter anyway. Thanks for commenting. I understand and respect the effort.
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My hearing too has declined so that i have difficulty recognising individual words and without hearing aids rely on context to make sense of sentences {sometimes wirh embarrassing or humorous results}. But so far it hasn’t had a detrimental affect on my ability to recognise people.
You’re so right about thise whose abilities are different from the norm beat themselves for their failure to be like others. Even worse, otbers beat you up for the same reason.
Since my autism diagnosis 11 years ago, I’ve begun to understand that some of my so called disabilities are just different abilities. Take for example how I recognise people. Up close and personal I perform poorly, but from a distance or where the face is obscured, I do exceptionally well. And peopke are still surprised that I ALWAYS recognise them on the phone.
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Aw, sorry about the loss of Sophie’s button. I remember reading about it in your book and thought it was endearing and a great way to explain prosopagnosia. I had my birthmark, which was on my arm, removed when I was seven for the same reasons. It left a really nasty scar on my arm. Well, maybe not nasty, just big for such a little thing. It draws attention and questions. My mom told me it was precancerous and to just tell people that.
I’m like Angie – I can see faces but can never remember names or if I have met the person before. People don’t really register with me. It drove my roommates in college (who I also went to high school with) crazy as I never had any idea who they were talking about. I always attributed that to moving so much as a kid. There was no reason to get too attached, the crowd was going to change again. I think that also attributes to why I am such a bad friend. I’m okay with it, I just like to think that moving explains my lack of interest to connect.
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It’s hard to envision you being a bad friend, unless it’s more in the realm of being uncomfortable being in touch with people. I’m a little bit in the same boat about not knowing who people are talking about. It’s a real problem at work. In a small town like Gettysburg, everyone is supposed to know everyone else… I never know who we’re talking about.
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I am a bad friend in that I am never the one to call a friend to get together, or catch up, or ask about them. I am very one-sided. I will ask those questions eventually when the other person reaches out to me first. I have had a couple of people just give up (and I never tried to fix it).
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Aw, sorry about the loss of Sophie’s button! I have a big birthmark on my back too. It’s the size of a hand now – and much paler than it used to be – but it covered my entire back when I was born, and it was a striking shade of blueish purple. Like a bruise? It also became part of the family lore (my mom had a minor car accident during her pregnancy and my birthmark is kind of shaped like a car, so…) and I know my parents, and especially my dad, would be sad if I had it removed.
I relate to the face-blindness anxiety, even though I don’t have face-blindness. But I do have ADHD and I get easily overwhelmed/overstimulated in crowded places; it makes it very difficult to pick out someone in a crowd, even my own husband! I didn’t know it was common for those on the spectrum though (ADHD and autism symptoms often overlapse). Another thing to add to my list!
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Are you on the spectrum? I suspect I am, but I’ve never gone for a diagnosis, because getting one would change nothing about who I am. Plus, one less label, I have a lot of those already. I know what you mean about getting easily overstimulated. I can look in the refrigerator for hummus for five minutes and not find it and when my wife walks over it’s front and center. You should see me in a grocery store.
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‘Interesting’ and ‘moving’ don’t always sit comfortably together, so nice work Jeff! Sometimes I wish my boy (15 ½) was a little more ready to leave behind his childhood. But then I feel a pang of sadness at the excision of Sophie’s button, knowing it now exists inside you and your family as a story; intimate folklore.
Out of interest, have you tried, when meeting/trying to log a new person’s face, imagining their initial on their forehead? A kind of visual mnemonic, I guess.
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The superimposed initial is an interesting idea. We just opened a new library branch and we have four new employees. I’ll try that trick with them and see if it helps. My fifteen y.o. just started rocketing towards adulthood. A year ago, I considered him a kid, he’s turned more adult than not at this point. Having Sophie off at college is bitter sweet. She’s doing great and having fun so I’m really happy for her, but it’s lonely here without her. Texting helps a lot.
You’ve written a few really awesome comments recently, the kind that remind me it’s all worthwhile, so thanks for that.
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💙
My pleasure. Don’t always visit/read as often as I would wish—here, or anywhere else, TBH—but try to engage when I do.
Funny business, blogging.
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Sorry Sophie lost her button! I guess she typically couldn’t see it but you knew it was there and part of her.
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And now I’ve written a whole blog post about it. Immortalized.
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I can relate to some of what you described. I’m not exactly face blind, but I can’t always remember how I know people, what their name is, or generally, much about them unless I have had repeat–and I mean, years and years–of exposure. I’ve run into people who will chat and tell me how they are doing and afterward, I’m wracking my brain to know who they were, how I knew them. If I knew them! I once introduced a boyfriend by his father’s name. The relationship did not last long. My memory has always been bad, but it is steadily getting worse as I age. I fear that at some point, I won’t recognize myself when I look in the mirror. I don’t know what this problem is, I just know the borders of my limitations mean I can’t easily connect with people. I miss the details of who they are and I think my struggle makes me appear disinterested, when what I actually am is confused and lost trying to recall who they are. It can be lonely having this kind of problem.
And having a child with special needs just isolates me further from the ‘normal world.’ My son’s limitations put my own struggles in perspective. He cannot speak. He cannot connect with another human being at all. He can only express who he is through his obsessions and demands. So, while I don’t know what it’s like not to recognize my baby–I do get the fear of never knowing who he truly is. And, because of the severity of his autism, I have no idea who I am to him. Mostly, just a caretaker who forces him to give hugs, and to do household chores. And I think I just tripped over into a little pity party for one, just now. Sorry. It’s a Sunday night and, apparently, I’m feeling a bit mawkish.
Last thought, perhaps your daughter will now get a tattoo for real–maybe one that you can share–a Daddy/Daughter identification badge. Offer to pay for it and see what she says. Then post those twin tattoos here so we can see them!
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In the post I linked, I talk a bit about how face blindness disrupts relationships. You’re right, when you’re always pretending to know people who know you, you come off as aloof or a jerk. You can pity party to me all you want. Autism parenting blogs are an interest area of mine, so I read a lot of them. I never know if I should comment on how hard their lives sound. TONS of work, little reward, fear of the future omnipresent. It’s a lot to take on.
I’m supposed to be done with tattoos. The last two went a little wrong, and I decided maybe three is enough. And if I get one with Sophie, I’ll need to get one with Eli. Sophie’s pretty into piercings. Maybe I should do that with her. Although she said her next piercing is going to be in her nose. I’m not doing that.
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Agreed on the nose-piercing. Can you imagine having a head cold and constantly blowing your nose, fearing your stud will come out–or worse, get sucked in? (There are many reasons I am not built for metallic augmentation. Weird anxieties and allergies are just two.) But, we do things for our children that we would not do for anyone else. I won’t judge if you commit to extra nasal hole-i-fication.
And thanks for the acknowledgment of the challenges. I can only think the harder part is being autistic and working with the ‘normals’ of the world. They have got to be the bigger frustration.
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