Word After Word

Watch for an episode, hosted by Leeza Gibbons, on face blindness in September…..more information soon.

I said what do you really, really want to know about face blindness. What is the one thing. Audrey said it. “Can you see the scars on your face?”

I can see my face when I am looking in the mirror. I can see your face when I am looking at it. When I look away, try to summon an image of my face or your face, I can’t get a face. I don’t get a non-face. It’s just literally drawing a blank.  It doesn’t feel wrong, of course. I can remember Audrey’s hair, the blonde kitchen curtains of it, but not her hands or her feet, of course. In my mind’s eye, she’s not faceless, she’s just Audrey in all her Audreyness.

So, no. I can’t “see” my face with the scars unless I am looking in the mirror. Lots of times looking in the mirror, I do not notice them. Then one day, they’ll jump out at me and I am shocked I walk around like this, and sad that I have them, and I wish they’d disappear. (Then, they sort of do.)

It shouldn’t be called face blindness. It should be called face forgetfulness. Or prosopagnosia, which is a good word, and very like the disorder in that it’s difficult and off putting and no one has heard of it.

When I came out as a face blind person, the struggle was to explain to people that I didn’t recognize them. This is always superbly hard because I don’t know right away who a person is. I have to figure it out.Now that I am out, people keep asking me, “How did you know it was me!” Usually, they just want more information on a mysterious and confusing and difficult-to-understand disorder. But sometimes I hear in the way they ask the question an accusation. I thought you were supposed to be so face blind.Face blind people often have highly developed compensation systems. I recognize people all the time. Not the human face. Every day, I can greet many, many people. By context. It’s hard work, it takes a lot of concentration and a really good memory and a very sensitive system.  So, the other day, I was walking in to the doctor’s office and this friendly person who clearly knew me, a student, was coming out of the doctor’s office. She said “Hi Heather” and I said “Hi,

At the Japanese restaurant the other night, a young woman in a white shirt at a large table of people said “Hello, Heather” and I had no idea who she was. I asked her and she said “It’s Lauren.”

“That’s funny,” I said. A few months ago, I recognized Lauren in a spectacular genius faceblind-compensatory triumph. I’d figured her out from the back, as she was walking to work, using my great sleuthing powers.

I think both of us thought after that stunning identification, I’d always know Lauren.

Face blindness doesn’t work that way.  This two-facedness aspect of the disorder one of the hardest parts of the whole thing. It makes me crazy. In some contexts I will know Lauren, in others not. The disorder is inherently unreliable. It’s like a person you would never have as a friend but have to take with you everywhere you go.

I told her Lauren I was bummed. She said, “It’s okay. Don’t worry. It’s okay.”

It is and isn’t.

I lie awake in the middle of the night, reviewing my day, wondering who all I have walked past, blown off? I’m tormented by this.

*

Suzanne, my mail carrier, told me a story about a man who wore a nametag that said his name and asked everyone to say who they were, too.

I love this man.

At the bike shop, where we meet for the indoor bike riding group, one thing that is so annoying and so hard (this might be another reason I skipped three weeks’ of session, in addition to the mind-numbing soul-flattening boredom I experienced in session one): I can’t tell people apart very easily.

Iggy says, when I am trying to figure out, post-op, who a person was, “What kind of bike does she ride?” I never know this either. I bought my bike solely based on one factor: the color. Because the color makes it stand out and easy to locate. (I bought an orange car for the same reason.) Face blind people are notoriously bad at identifying road vehicles (and their owner operators). I guess we’re good in fields, sofas, forests, libraries, and ancient places–zones where transportation is not important.

At the bike shop, the owner/pack leader MC is easy because he acts like the owner/pack leader MC; he has a distinctive voice and a great noggin; he’s super friendly and always really nice to me. (He’s Southern. Love Southern.)

But the rest of the people (all very nice people): they all look like so many other people I may or may not know—it’s just so friggin hard. I’m just never sure who people are, if I know them. (Whining….)

So, I concentrate on the people I do know for certain. Iggy (outing himself as himself by handing me items that belonged to me, and completing a book-sale transaction we’d arranged previously). Spidey. I always know him because he is assembled in the same fashion as a spider. All night I was thinking I was riding next to Spidey (we’d resolved our little wind preferences issue neatly enough) and then I looked down, towards the end of the night, and saw on his trainer the name Pave. Pave is a whole different dude. Pave is not Spidey. I inspected him carefully. Could he be Pave?  Or was Spidey borrowing Pave’s trainer? I’d kind of talked to him, but I could really talk to him because I wasn’t sure who he was. At all. If I’d ever seen him before in my life.

So, intrigued by the notion the cyclists were all labelled via their trainers (thanks, Jeff), I looked at all the other trainers, checking the dynamo labels I could see from my station. I was very surprised by some of the things I learned. For example: Vixen Two was one bike over.  Really? Couldn’t be her. Vixen Two is blonde, and this woman was brunette-ish. So after many miles of endlessly pedalling nowhere, I got up the courage and I asked her, “Vixen Two, did you dye your hair?”

She had. (Not only do I know her, she’s my—formerly blonde—personal trainer.)

It’s really hard (whine) to sit there not knowing people all evening; I used to never leave my house in the evenings (pity fest, but true). I just stayed home. Freaked out and not up to going out and not-knowing people over and over and over.

Now, I’m trying to sit with not knowing who people are and know this for what it is. I hate it though. I hate how hard it is to connect with people I like so much, I hate that I treat my friends as strangers. I hate it so much. I hate that Spidey/Pave remain phantoms, ideas. 

But at home, during the hermit years, it was worse. All I had was myself to not recognize.

Out in the world now….sitting on my bike: oblivious, hopeful, hello.

There’s a wonderful article on face blindness in People by Bill Hewitt.

On the cover of the magazine, which is about The Revenge of the Exes and Who Can’t Let Go, it’s hard to tell who can’t let go, who is the exes, and who is letting go. It’s hard to tell if that’s all the same woman in different phases of revenge, or different women with varying revenges. Paging through the magazine, it’s really hard to tell any of the blonde women apart at all. They all look like Jessica Simpson.

That’s how people look to those of us who are faceblind: normal but more the same than different. The faces simply look alike. In the art that accompanies the story, beautifully written by Hewitt, the faces have been distorted. That’s not what faces look like to a face blind person. I know it’s hard to imagine.

Tee keeps telling me that to imagine blind, you close your eyes. (Which actually isn’t what being blind is like but I see her point which is that you can’t blink and squint and see this way that I see.) That’s because it’s not a vision problem.

It’s something else. And, people in People are the most alike-looking group because their hair and costumes are also very very alike.

But the writing is really great!

It’s the first trip in my life for which I packed light. I didn’t take baggage. At home, I wear the same clothes for days. I bought so little with me. I didn’t think about calling my Mom. I didn’t bring any work. 

Yoga classes twice a day.

Eating in silence. Buddhabowl: you eat what fits in a small bowl, the size of your stomach. Slowly.

There’s not good karma or bad karma: it’s life.

A philosophy I want to bring into my writing classroom: it’s your practice, it’s your body, it’s your yoga: what’s right for you? so that you learn—really truly feel—the difference between pain and hurtful versus what’s stretching, difficult, but nourishing and healthy and good.

Drumming, chanting, praying: a full moon ceremony (the lofty moon it’s called—it’s so high up, it appears tiny and unreasonable).

A fire ceremony. (I’m not sure what that is but it sounded cool; participants complained it went too quickly. I’m thinking: That’s fire!)

Reiki. (Who knew!)

Massage: “thank you for receiving.”

Yoga is softness and strength. It takes a lot of strength to open your heart. It takes a lot of guts. When someone yells at you, turning the other cheek comes from a place of great strength. Anyone yelling at you is saying “I NEED YOU TO LOVE ME.”

Four women, Gaia Roots, who study with elder musicians around the world, learning old rhythms, old lyrics, old instruments, and then they pass it along.

Massage: “pay attention to your body.” 

Three children spontaneously dancing in front of a crowd of a couple hundred, loving dancing and truly performing  not showing off. They were inhabiting the dancing whenever we’d clap, they bowed, hands in prayer position: thank you for letting us, thank you for loving it, it’s good isn’t it?

Massage.

Meditation. “My mat is a prayer rug.”  “Through my breath I extract God.” There’s more traffic here than you know.

“The more dysfunctional the system, the more rigid the roles.”

A still pond reflects the world. A choppy pond: all it sees is itself. (Good writing lesson.)

Green moss, the ice fairy land, Monk’s Pond. The most strange and beautiful shades of green.

A class in Shiatsu massage, where the teacher, Ken, kept saying: your partner isn’t paying you for this massage. You are doing this work for free so don’t make it work. Be selfish, get a good twist. Protect your back, your wrists. More fodder for the writing classroom: you aren’t getting paid to do this writing. It has to be fun for you. (Magically of course, when you aren’t working but playing instead, the massage is much better, your technique is smoother, wiser, instantly—so too for writing!) You aren’t getting paid! He kept saying. Stop working. Lean. He said Lean.  If you press on someone, they will press back, the body will resist, it will say: what is happening to me here? Am I under attack? If you lean, they will relax, feel safe. It’s like the floor, when you are sitting on it. You don’t press with your hands. You lean. Less effort = good.  This is true for writing. You don’t want to try. Lean. If you lean on another person, love, support, and safety are exchanged.  You can’t try. You have to entrance. You do this by making very very predictable movements, steady, no tension on part of the giver or the receiver. Great writing lessons. 

Basically, Ken said, we are trying to learn one thing: how to stop giving each other the creeps. 

Nametags. Everyone has to wear a nametag—teachers, volunteers, staff, every participant—you can’t ever be without it. Heaven.  Maybe that’s why I loved my five perfect days. Everyone was helpfully labeled. It was so easy to make friends. And keep them. 

When you see a person, I think their face is, for you, like the tab part of a file folder. The contents are labeled, the face is the answer of a person. 

When a face blind person sees another human, it’s like being presented with a non-tabbed file folder. A folio. No label. The answer is hidden inside. When we see a folder/human we know it’s a folder, that’s clear. It’s a human, obviously. But which folder? What’s inside? Who is it? It’s not always instantly clear. There’s not a label, a quick brief answer. We face blind people have to open the folder.  We have to root around. We have to figure out what the folder should be labeled by examining the contents.  

If the folder is scarred, superbly wrinkled, or stands out in some other consistent, flagrant way, we can tell you who it is; the lack of a label isn’t important. Weird people are beloved. Radical non-comformists: you are doing the face blind community a daily public service. Freaks, we love you! We need you! Freaks of the world untie!  (sic)

When I first tell people about face blindness they are really nice. Then, later, if I should happen to recognize them (see Tabbed File Folders and Faces post) by their voice, or from the back, or by using my stunning sleuthing skills and practices, some people confront me, as though I am wrong. Wrong to know them. Wrong about face blindness. Perhaps misdiagnosed. Getting all this attention and extra help for no discernible reason they can see!  They say: How Did You Know it Was Me? How did you know how I was? Most people (like Tee and Lauren) are truly asking for more information on how the disorder works. But sometimes, I have detected in a few people a tone of judgment, doubt, or “gotcha” and it’s withering. I feel I’m wrong even though I’m right about being wrong about people all the time.

So, I pretend to know more than I do.

Do you?

I saw Tee again. (If you read post  How Did You Know It Was Me, below, this will make more sense.)

I was at the airport, coming home Sunday night from the Five Perfect Days. I walked up the jetway and at the end, there was my friend Tee, holding two balloons, each bearing the motto:

Her curly telephone cord hair, her cute self, scanning the crowd—she didn’t seem to see it was me. I went up to her, full throttle, pretending I was thrilled she’d gotten me Mo balloons. I was going to hug her when she snarled.

And looked away. This not-Tee person, waiting for the real Mo, acted huffy and weirded out as if I was the weird one. I am not the person with Mo balloons, I wanted to shout.  

(Once, I did encounter Tee at the airport, on a plane, actually, and I didn’t recognize her, but she told me it was her. I think my brain was hot-wired at that point to quickly identify Tee-like-beings at the airport as

When I told Tee the story she said, “They say everyone has a twin somewhere in the world.”

In the face blind world, everyone has sixty thousand nine hundred gazillion twins.