How I Discovered I Had Face-Blindness

I remember, when I remember, in photographs. No sound. No smell. No touch. No movement. I have a vivid still life to which I can add intellectual awareness of the other sensory features, as if reading them off a description on the back of the photograph.

One of these photographs is from around 1978. I am three years old, my hair in pigtails that curl into ringlets, the way Cindy Brady’s did. I have my arms around a plaid-pant encased leg, my cheek squeezed against the bent knee, eyes closed. I look like world’s tiniest tree-hugger. There are blurry shelves on either side of both me and the pants, because we are in an aisle of a drugstore. When I flip the photograph over, I know that there is music playing over the speakers, the overhead lights are bright, saturating every corner and crevice, and I am scared because I somehow lost my dad at the store. When I finally see him, I run over and grab him. Then an unfamiliar man’s voice says, laughing kindly, “I think you have the wrong person.” I look up and see not-my-dad. This man is white and my father is brown. They are both wearing a pair of 1970s plaid bell bottoms. I flip the photograph over and there I am, still hugging the stranger, relieved to have found safety.

So what? Lots of kids make that mistake.

But.

It happened over and over again.

I just told myself that I was flaky, not paying attention. I had been told that by family and friends throughout my whole life, because I couldn’t keep track of birthdays, turn in my homework, be on time, remember how to get home from school. So, I began believing it, too.

When I was in college in New Orleans, in the mid-90s, I cultivated that idea and became the ultimate manic pixie dream girl, before that phrase was even coined. I would flit around The French Quarter in my slip dress and combat boots, flannel shirt flying behind me like a cape. I popped into bars (the drinking age at that time was 18), and, if a man stared at me long enough, I would smile at him and say, running my fingers along my metallic purple dog collar, “Do I know you?”

Only, I was being serious. This was no pick-up line.

Of course, once the manic pixie dream girl effect wore off, I was just the flaky, not-paying-attention girl who was hyperfocused on her one or two obsessions, like listening to the same Sundays CD for months on end and playing ragtime music in the piano practice rooms, and completely scattered with everything else. I went from adored to despised pretty quickly.

But, I was used to that.

In my twenties, when I taught English, I could not understand how my colleagues could keep track of their students. This was college and there were no assigned seats. At first, I would just point to people when I asked a question. Since I disliked how impersonal that was, I would simultaneously beam at my students to show them how much I cared. Sometimes, if finger-pointing and crazed grinning felt particularly draining, I would have them turn to each other and discuss the question. Finally, I created a system that worked: Instead of having one student collect the daily free writes and bring them to me, as I had done in the past, I would collect them in a specific order off the desks. I would then have the students take two minutes to talk about their thoughts in groups while I quickly scribbled their names on a blank seating chart. I did this every class.

This had a really extraordinary side-effect. My scrambling to demonstrate engagement with my students went above and beyond what many of their other instructors had done. Because of this, we built a foundation of trust. They challenged themselves by writing about experiences that had long lain hidden in the dark shadows of their memories. They wrote passionately, carefully crafting their sentences and paragraphs to convey their thoughts as clearly as possible. They shared laughter and tears. They learned.

Of course, when I was offered a full-time position, I panicked and moved across the country.

In my thirties, I worked at the front desk of an animal hospital. We had regular patients, which led to regular humans, which led to an expectation that I would remember their faces when they came in for their monthly, weekly, daily appointments. Only, I couldn’t remember faces.  I would spend the first few minutes of my shift reading the schedule. If I wasn’t familiar with the pets, I would look up their accounts to find out if they were dogs/cats, males/females, etc. Then, when it was appointment time, I would make my educated guess, smiling warmly at the ding of the bell as the door opened.

“Hello, [person’s name]! It is good to see you again! How is [pet’s name]? Go ahead and have a seat while I check you in.” Nine out of ten times, I got it right. If I messed up and the owner’s sibling/parent/child/neighbor came in instead, I would make a joke about how I am better with furry faces, which was not untrue.

Again, this had a similar effect as my seating chart. The pet parents would seek me out when they came in for appointments. I was very meticulous with their medical care, in large part due to my executive functioning challenges, and they appreciated that. But, because I lived in the same neighborhood where I worked, I would often run into these same pet parents, and they would hug me and start chatting on the sidewalk or at the store or in a restaurant. I would spend the first moments trying to place them, because of course, I couldn’t recognize them and had no context. It was panic-inducing, especially if they didn’t have their imminently memorable pets with them. I became quite skilled at the self-deprecating Chandler Bing approach, which actually seemed to endear instead of repel me to others.

I still didn’t realize that this was not typical for most people. I just thought I did it (whatever it was) worse than everyone else because of some inherent laziness.

In my forties, I began teaching again, at a small non-profit after-school organization for kids in elementary school through high school. This was not an attendance-based program and I interacted with them outside of a classroom setting, so a seating chart was not the solution here. I had recently purchased miniature marbled composition notebooks (I love miniatures and collect them, from kitchenware to candles) and began carrying one with me. Everyday, I would write a description of each kid I encountered. For example: “Jaime, Spider-Man backpack, Minion t-shirt, black Vans” or “Kelly, Frozen backpack, Minion t-shirt, ponytail”.

I knew so much about them — if they had been bullied or won awards; if they had taken tests in school or played soccer; if they had siblings or how they were going to celebrate their birthdays — so it wasn’t a question of loving them. I did. I really really loved them. They were some of the kindest, funniest, most generous humans I have been blessed to know.

However, if Linda cut her hair, it would take me a minute to figure out who she was. Same deal if Miguel got a new backpack. After Linda and Miguel greeted me, I would smile and ask, “Hey, is there something different about you today?” And then they would tell me stories about waiting with her sister for two hours in line to get the free haircut the beauty school offered every month and how the old backpack ripped when he fell while skateboarding … “Ms. Saraswati, wanna look at the scab?”

Because the kids dropped in whenever they wanted, walking from school or their homes, we didn’t have the opportunity to interact with their caregivers very often. Finally, we held a Family Week, inviting loved ones to come to our center, showcasing a different feature of the organization’s offerings each evening. We had name-tags for everyone the first couple of days, but since my coworkers recognized the caregivers after that, they were optional and mostly ignored.

“Who needs name tags when we’re all family?” one of the parents joked, writing “Amelia’s Dad” on his.

Me, that’s who.  Out came my little composition book.

The families appreciated my tenacious note-taking because it showed how much I cared for their kids. They thought I was writing down teachers’ names, tutoring needs, family histories. They weren’t wrong. But, I was also writing “Olivia’s grandfather — Charles, primary caregiver, mother’s side, mustache, tall, coveralls” and “Ron’s mom — Maria, divorced, works at bank, blonde, long fingernails, heels”.

Here is how, at the age of forty-two, I finally realized that I have prosopagnosia: on the penultimate day of Family Week, one of the kids left with her mom. I turned to my coworkers and said, “Wow. The mom seemed more serious today, almost like she didn’t know me.”

Silence.

My colleague, Mona, said, “Uh, that’s because that was the grandmother and this was her first time here.”

Huh? I thought. Out loud, I said, “No way. I checked her nametag. See?” I pointed to the nametag she had put on the table as she left.

“Yeah, the mom and the grandmother have the exact same name — they all live together. See?” Mona pointed to the duplicate names in our system. I thought staff had accidentally added it twice.

“Yeah, plus, if she was the mom, she’d be like, really old. Like forty-five or something,” Kendra piped up.

“I’m forty-two,” I said, “and lots of my friends [ha, what friends!] who are my age have little kids.”

More silence. Of course, I didn’t realize that this was an embarrassed silence on the part of Kendra. I wasn’t embarrassed to be forty-two and old enough to be a grandmother, so why was she? (My husband explained that whole dynamic to me later.)

“They look exactly alike, don’t you think?” I enthused.

“I guess,” Kendra ventured, “they both have long hair.”

Mona added doubtfully, “Yeah, and she was wearing a sweater, so you couldn’t see that she didn’t have tattoos like the mom does.”

“Wait, they don’t look the same to you guys?” I asked.

Nope. They didn’t. And not because of their hairstyles or brown eyes or covered tattoos or similar height. It was because their faces were different and everyone remembered or recognized or whatevered that. Everyone except me.

I went home and looked up “not able to recognize face” and learned about face-blindness. It was like a tumbler locking into place: why I struggled watching shows, why I couldn’t identify loved ones — why I couldn’t identify myself — in photographs, why changes in hairstyles or additions of hats made people look completely unidentifiable, and so on and so on.

I always thought face-blindness meant literally not being able to see faces.

It seemed unreal to my husband, Adrian. He believed me; he just couldn’t believe it. He couldn’t understand how we could have been together for over ten years and he never knew.

I said, “I’ve been with myself for over forty years and never knew!”

This discovery led to another … one of my special powers. I am extremely mindful of details and characteristics. I rely on visible clues such as hairstyle, gait, posture, and gestures to recognize people. But I also am cognizant of the connections I make with the more nuanced ones, such as Adrian’s chuckle, which always makes me feel as if I have eaten a hot fudge sundae, with that delicious sensation of cold ice cream and sticky hot syrup traveling from my lips to my belly. Or the way my friend Loverne’s saucy, husky voice instantly reminds me of my mother’s surreptitious giggling when she would visit her cheeky childhood schoolmate.

And yesterday, when the stranger at my boxing gym said, pulling her hair up, “Hi, Saraswati, good to see you again”, I didn’t miss a beat.

“Hello! Did you change your hair?” I said, smiling.

“Yeah — I colored it. You’re the first person who noticed!” The familiar ponytail bounced over her shoulder.

“Well, it looks great, Sam,” I said to my instructor and walked over to the locker room to wrap my hands for protection before I came out swinging.

© 2017 Saraswati Chand

Posted in Uncategorized | Tagged , , , , , | 2 Comments

“Why Do You Want a Formal Evaluation?”

This is an oft-asked question. It is of particular importance here because the autism community accepts self-diagnoses. Evaluations can be expensive and subjective. For people with autism, it can be very challenging to communicate experiences and perceptions in “typical” ways. We hope that the specialists can understand other forms of communication, but that isn’t always the case. This procedure can be exponentially difficult for women and girls and those who are gender neutral, gender fluid, or transgendered, because they may express their autism differently than the expected presentation of diagnostic criteria. This is largely due to socialization rather than actual gender and/or sex differences. Still, in some ways, autism is still very much a cis-boys’ club.

Despite all of this, I long for a formal evaluation. I have many reasons why. I appreciate formalities. I want there to be no doubt that I am part of this tribe. I would like my voice to have the buttress of an evaluation when I speak to people outside of the community.

I haven’t had a concrete reason, though, until now.

So, why do I want a formal evaluation?

Because, the other day, I hurt my very good friend.

She is really my only in-person friend. We don’t see each other often, but I love her. She is forthright and compassionate and does not use subtext at all. What you see is what you get.

We were at lunch and talking about the spirits of our dead loved ones. Loverne mentioned her cat, Magpie, and I said, “Magpie?”

Loverne said, “Yes. Magpie.”

I repeated, shocked, “Magpie?”

Loverne paused, and in that instant, I considered shaking my head a little, closing my eyes, and saying, “Of course, Magpie. I know exactly what you mean.” But, I was so distraught that Loverne’s cat had apparently died, that I felt frozen.

Loverne, her beautiful blue eyes widening (I could feel them on me, burning my skin like sparks from a fire — oh, eyes can be such penetrants), said, a bit unsurely this time, “Magpie … my cat?”

At this point, I had The Look That Infuriates on my face. My eyes were blank, mouth slightly open, and I was expressionless. This look elicits a special kind of rage in people, one that makes them exaggerate their speech, throw their hands up, roll their eyes, and sigh. They say, in incredulous tones, “Are you serious right now?” and “You really have no idea what I am talking about, do you?” I have been told that I look disinterested or clueless. What’s really happening, is that my brain is processing, the way my computer does at three in the morning when I forget to shut it off, while the monitor stays asleep, dark.

In this situation, I was trying to process the death of Magpie, whom I love. Some of my favorite stimming comes in the form of interacting with animals, and Magpie had the silkiest fur, like very fine newborn hair. She was so shiny that light would bounce off her as if she were made of titanium. And she was slinky and sinewy, her movements almost sinfully decadent, muscles undulating in lazy waves. When she wanted attention, she would butt her small head against me and rub it up and down on my skin, her own form of stimming, perhaps.

Magpie is … dead? I wondered.

At the same time, I was trying to figure out how I could not have known this important information.

At the same time, my heart was cracking because, here we go again. One more friend lost because I can’t remember important information. Why am I so selfish? Why am I so self-involved that nothing else filters in?

At the same time … Magpie is dead??? Tears filled my eyes.

I think I could still have successfully  masked at this point. I think I could have smacked myself on the forehead and said, “What am I thinking? Of course, Magpie. God, Loverne, I know she was your cat. It’s just … I still can’t believe she is gone, so you know … it took me a second to register …” Not great, but not as bad as a complete blackout. And then we would have laughed at my weirdness and the conversation would have continued, with the background static of Magpie is dead? Magpie is dead? Magpie is dead? running continuously through my mind.

I could have done that because I always do that. There is a saying, “You’ve got to go along to get along.” Damn, it’s exhausting, falling one lap behind, then two, out of breath, never really catching up. At least when I am masking, though, no one else ever knows how far behind I am. At least I am not hurting anyone.

But, I made a promise to myself not to mask with Loverne or Adrian, my husband.

“I just didn’t realize,” I said, hesitatingly.

“Um, okay.” To Loverne’s immense credit, she didn’t exaggerate her speech, roll her eyes, or storm away. She seemed confused — and a little scared. But, she stayed with me. “Magpie was sick …” she prompted.

“… and she wasn’t getting better, so you took her to the hospital …  I remember all of that. I remember talking to you, letting you know this was the right decision, sending your photographs of her for your album.” And, I did remember those things.

“So …” Loverne continued.

“I don’t know. I just didn’t make the connection, I guess.” I felt so helpless and I knew how much Magpie’s illness and death had affected Loverne. I hated that I was making her relive the hardest parts of it because I couldn’t remember. Or was it that I couldn’t make that connection?

“Where did you think she had been this whole time, when you came over?”

“Under your bed.” I said this without hesitation, which may have proven the veracity of my oblivion.

“I see.”

I laughed because I was uncomfortable and nearly shouted, “I almost cried just now because I though Magpie had just died.”

The server came by and I asked for a box because I knew this meal was over, hastened by my brokenness. I have a pile of necklaces at home with damaged chains I need to fix. I wanted to put myself in that pile, but no pliers would twist the disconnect together and make me whole.

After the server walked away, I said, “I am so sorry, Loverne. I would never do anything to intentionally hurt you. I care about you very much. I just — I need things spelled out for me, otherwise I don’t make connections.”

She accepted my apology, murmuring, “I know.”

We continued our afternoon, spending a couple of hours at her house. I was surprised and grateful when she asked me to stay. Loverne showed me her flourishing garden, the phallic luffa dangling from their vines like the Massa Marttima mural sprung to life. She told me stories about her daughter and parents. She listened as I described a scene in the book I am writing. She gave me a miniature bowl and creamer because I love miniatures and they reminded her of me. She commiserated when I cried as I described my self-aborted evaluation, proclaiming the psychologist to be “awful” for his mocking and dismissive manner.

She didn’t hug me even though she is a hugger, maybe because she senses I prefer not to be touched unless I instigate it.

I apologized again. I don’t know if she heard. I suspect she did, but Loverne is not the type to overanalyze and, I did hurt her. She knew it wasn’t deliberate, but neither is giving dinner guests food poisoning: it is still brutal and raw and healing takes time.

She pointed out the cat-shaped urn on her bookshelf, and I said, “I remember that.” I did, too. It was small and smooth, slightly cool to the touch, like the river rock I kept in my pocket and rubbed in secret. I still couldn’t tell you if the cat is sitting up or lying down, though.

The entire time, I felt three tornadoes churning in my belly: one for her discomfort, one for my discomfort, and one for my discomfort over her discomfort. While I do not often understand why people feel the way they do, I can feel their feelings, which in turn affects my emotional, physical, spiritual self. It’s like a pinball, ricocheting through the machine, causing all kinds of lights to flash and noises to sound, levers to open.

When I returned home, I said to Adrian, “Something weird happened today.” I know that my affect does not match my emotions, and in this case, I think I may have sounded amused. I was so anxious and those tornadoes were still whirling away.

After I relayed the events, he said, “That seems off-putting.”

Stung, I said, with concern and great sincerity, “Maybe I shouldn’t have any friends.”

He responded, “Just work on keeping the ones you have.”

What?! I took a hot shower, the strong water pressure kneading my muscles. As I dressed, Adrian asked, “Do you feel better after your shower, baby?”

“No, I don’t understand why you said that.”

He came into my room and the three tornadoes hit, a rainstorm of tears gushing down my face. Plus, Magpie had died. She had not been hiding under the bed. Sweet, fierce girl.

Adrian put his arms around me and I sobbed. “I didn’t mean to be off-putting. How can I work harder if I already work as hard as I can? I don’t have any tools. I don’t have an instruction booklet. If you think ill of me I will be destroyed.” Spittle sprinkled over his arms and I apologized. I had no control over my body at this point.

“You work so hard. Loverne knows that. She didn’t get mad. She loves you. You love her. It’s okay, Saraswati.”

“Why did you say that then?” I was inconsolable.

“I just meant that you should focus on the friendships you have and show her how much she means to you, even if you can’t remember events.”

Mute, I lay in bed and Adrian lay on top of me. I love his weight on my body. After several minutes, I went to sleep in my dark room, the fan blowing cool air over my face as I snugged tight under my heavy blanket. A few hours later, Adrian reminded me to eat something. I ate my everyday sandwich and lentil chips and then spent time on the internet, posting the incident on autism support groups and message boards, wondering if anyone else had experienced something similar.

Or am I just an asshole? A monster? 

I didn’t have a specialist to ask. I hadn’t seen much about memory in most of the blogs, organization websites, and scientific articles I had researched. I was alone.

And then: one response, two, three … people telling me that they, indeed, had experienced something similar. One gentleman wrote that he forgets his close friend had died, though he wears his friend’s watch every single day … four, five … it was like watching a rain barrel fill with water. Some people theorized that perhaps due to compartmentalization we have to be re-exposed to the events and process them all over in a different way than we did the first time. Another thought was that we remember through our emotions and not through actions. We were all trying to figure it out together, as if our experiences were photographs that, when laid side-by-side, created a panorama.

With Magpie, my role was to help Loverne through her trauma. My actual memory of that time last spring was feelings of sadness and despair, and an image of my hands cupping a lizard after he had fallen into my pool, the drops of water magnifying his scales in the sunlight. Once Loverne prompted me at lunch, I remembered how I offered her love and support when Magpie was euthanized, how distraught and overwhelmed Loverne had been. I still did not make that connection to death. I felt it fresh, as we ate pizza in the autumn sunshine. Now I am processing her loss in a deeply emotional way, remembering her sweet face, her whiskers feathering my cheek.

Inspired, I renewed my research the next day and found a blog written by a mother whose son has autism. She described something called episodic memory, which is part of our autobiographical memory. I continued my search and came upon an article about episodic memory that gave an example of how an NT might remember an event and juxtaposed it with how an ND might.

Bingo! I thought. This is it! I am not a selfish, self-involved monster. I just remember things differently. Not better or worse … just differently.

Relieved, I texted Adrian at work. I have not discussed it with Loverne,  because, as I mentioned, she is not one for analysis and dissection. She loves me and I love her and that is enough.

How many times, I wondered, have I lost people who I care about because they think I do not care? Too many to list here.

What would be different if I had a formal evaluation? Maybe nothing. But maybe I would have a specialist in my life who could guide me, provide me with resources and tools and the wisdom of experience. Maybe this knowledge could act as an interpreter between the NTs who love and want to understand us and us, the NDs who are always on that hamster wheel, trying to get from the point of confusion to the point of understanding.  Maybe instead of emotional self-flagellation I would default to self-care and kindness.

Because, here is the thing. I don’t know that this was due to episodic memory processing. It is what I have determined after hours of reading anecdotal and scientific documents, but I am not an expert on autism nor on memory function. I am hearing hoofbeats and trying to figure out what animal they belong to with no expertise and little assistance.

What I do know after this entire experience is that with or without a formal evaluation, there are no pliers needed because I am not broken; I am whole and very connected to the world around me, to my friend, my husband, to the animals I am blessed to love.

And I love you, Magpie.

© 2017 Saraswati Chand

Posted in Uncategorized | Tagged , , , , | 2 Comments

Storytelling

The more we share, the louder our collective voice. That is where storytelling comes in. Stories build communities and create tribal knowledge. Stories connect us to each other. Stories tell truths that the shamers and oppressors cannot hide. Stories are forests, like natural disasters and political upheavals, and stories are trees, like these hero tales from Hurricane Harvey and these brave young activists who are changing the world with their grit and positivity.

Those who are trying to quiet our voices are loud. We can be louder.

Here are my stories about how I perceive, experience, and interact with this beautiful world through my neurodiverse, autistic senses.

Oh, and why the snail? I LOVE snails. I always have. They are such deliberate, perseverant beings. They get to carry their snug little houses on their backs, like coiled weighted blankets. They leave a pretty shiny silvery trail — if I could do that, maybe I wouldn’t get lost so often! They move at their own pace and apologize to no one. And they are just so darn cute, with their plump little eye stalks and chubby little feet.

If you do read my blog, please know that I am very honored and appreciate your time. I love comments! 🙂

 
© 2017 Saraswati Chand

Posted in Uncategorized | Tagged , , , , | Leave a comment