My Mountain is Calling and I Must Go …

Inside each of us is a mountain, one so tall that the top cannot be seen.

The only way up is via a straight flight of stairs that are carved right into the rock. They are slick, they are narrow, and they are steep.

Every one hundred steps or so, there is a landing that leads to a path. This path encircles the mountain. Step onto it, breathe in the fresh air, sit on a boulder, enjoy the panorama — but remember, the only way to the next landing, the next path, is by climbing another set of stairs.

You may choose never to mount those steps; you may choose to stay on the ground. Or you may decide that the landing you are on, that looping pathway, is a good place for you to set up camp. You may stay there for days, weeks, months … even a lifetime.

After my mother died in 2008, I stopped climbing for a good 5 years. I hunkered down on the path that I was on, weary with grief, and looked into the deep valleys of memories that lay before me. In 2013, I stood up, flexed my muscles, and began a slow ascent of that stark staircase once again.

Then in 2017, I began running up the staircase. In 2017, the year I turned forty-two, I learned that I have autism.

The first hundred steps were surprisingly easy. They were when I began practicing mindfulness, intentionally focusing on the present moment. Since I was young, I have been aware of “living in present tense”.  Every single day, every second is a piece of clay that I sculpt with care and consciousness. I do not have a strong episodic memory and looking to the future is like looking straight at the sun, bright white and blinding. Because of this, I am able to cradle the individual moments of my life, nurturing them before they pass by, unnoticed. When I reached the landing, I didn’t even have to pause to catch my breath before bounding up the next set of steps.

I became alcohol-free. For almost twenty-five years, I drank alcohol on a regular, near daily basis. It had become part of my routine to measure out my wine and sip while cooking, sip while eating, sip for dessert. The process of measuring was part of my routine. The goblet I used was part of my routine. The struggle was not in giving up the alcohol; it was in giving up my routine. For weeks after I stopped drinking alcohol, I still measured juice or ice tea in that measuring cup, sipped from that goblet. Now, almost a year later, I have a new routine of morning-afternoon-evening teas, each with their assigned mugs, and a water-berry-seltzer blend in the evening, in a cut-crystal glass that is surprisingly similar to that once required goblet.

This time, when I reached the landing, I stopped, arms open wide, and gulped in deep breaths of clean air. I felt the warmth of the sun on my eyelids, a refreshing breeze nudge my cheeks. This is what it felt like when I was eight, I thought. Back when I played in the desert, read books, wrote stories, and swam all summer long.

I strolled that path, expecting that sobriety would resolve many of the issues I had experienced throughout my entire adult life, such as forgetting conversations from yesterday, bruising my hips after misjudging how to maneuver around obstacles, and burning my fingers and forearms while taking dishes out of the oven. As I followed the loop around the mountain, I was surprised that my expectations were not fulfilled.

In addition to that, I felt raw, as if my skin had been peeled off and all the underlying nerves exposed. Alcohol was a Band-Aid and now I was bleeding, my intense empathy exposed again, unable to distinguish others’ feelings from my own. I hid from the world. I became vegan. I worked on my book in earnest. I allowed myself to cry. I squeezed out sadness the way I would wring out a wet towel. I built a wall out of stones and clay. I hung those damp towels on the other side of the wall, aired them out, let them dry. There were puddles everywhere.

Eventually, I decided to go to the next path and began climbing the steps again. This time, I moved more slowly. The stone was damp and slippery. I needed to pause to rest my knees. When I was about halfway up, the educational director of our afterschool program introduced me to a volunteer who was going to assist with our most popular activity. After we parted ways with her, I said, “I can feel her positive energy just lift me up.”

My boss said, “I know! She is one of the volunteers we recruited from the autism organization. We are so lucky that she is part of our program. Although, I am not sure why she chose to work on that activity because she does experience sensory sensitivities. I’ll make sure to check in with her throughout the day.”

“Maybe she did it to challenge herself,” I suggested.

“Maybe,” my boss said, drawing the word out, though I suspected later that she didn’t really agree.

I thought about that conversation as I paused to rest, holding onto the rickety handrail. I wasn’t fond of that activity because it had a cacophony of loud noises from computers and movies, and because the lights were too low, blurring everything, reminding me of driving at twilight. It made me feel chaotic. I coaxed myself every day to lead that activity because my students LOVED it.

I wondered, If I had a sensory sensitivity, would I challenge myself by working there or would I pick some other activity, one that wouldn’t leave me overstimulated and exhausted? I still hadn’t recognized that I was left overstimulated and exhausted. Probably not, I decided. If I had autism, I would advocate for myself.

But, my problem, as the adults of my childhood had taught me, was that I was simply too sensitive. There was nothing for which I could advocate; I just had to try harder. I must have had a vitamin deficiency if I was that tired at the end of the day. My social obligations were greater than my selfish desires for time alone. I needed to stop fidgeting and pay better attention to what people were telling me. I just had to climb faster and further. Nothing less was acceptable. No time for enjoying the view.

So, I pulled myself up from the bootstraps, just like I always did, and kept scaling those steps. Our program began to hold Autism Days, when we changed our lighting and sound effects and limited the number of families who participated. I found myself drawn to those shifts, which felt as freeing as unbuttoning a pair of tight pants.

I worked with people on the spectrum, people who came in on alternating days so they could have time to re-energize between shifts. Hey, I do that! I would think, though that recuperation period was just a bonus for me. I really did it so that I could work on my book on the off-days. Of course, I could have worked at the program four days in a row and spent four consecutive days writing, which would make sense in terms of focus, but no, these alternating days seem to be the most successful, for some reason. I took another step, my thigh muscles trembling, my breath shortening.

I taught children on the spectrum, children whose parents told me that their kids were task-oriented and needed time to finish a project before moving on to the next; that their kids had to eat their food in a certain order and needed space to lay it out in a certain pattern; kids who struggled with unexpected changes and could have meltdowns if we didn’t adhere to the schedule. I would smile at these parents and say, “I completely understand and don’t worry, we will make sure your kids have what they need.” I did understand, too. Quite literally. My knees buckled and I grew dizzy from the altitude. I leaned forward, resting my head on my forearm for a moment.

And then. And then. And then I learned that I have face-blindness. And then that program director walked into my classroom and said, “I have been calling you for the past fifteen minutes.” We both turned and looked at the phone, which was right next to me. The volume was turned up as loud as possible. The kids were working in groups, murmuring to one another, and I had classical music playing quietly in the background.

“I-I don’t know. I just didn’t hear it. Sometimes I have a hard time distinguishing sounds.”

The director, whose daughter had a fairly late autism diagnosis, stared at me a moment, and said, “Okay.”

And then I reached the landing. I was struck with vertigo and sat down, leaning back against the sturdy mountain.

I was panicking. I Googled “autism signs”. And then. And then. And then I knew. It felt like sliding into a refreshing lake after hiking up a steep trail in the peak of summer.

I stayed on that path for a long time, turning over every rock, peeking under every leaf, examining every aspect of my life. Autism.

I began climbing those steps again, slowly at first but gaining speed. There was mica embedded into the stone and the sunlight would flash on it, reflecting back a memory. The way I have spatial locations for numbers and time, like stars in the galaxy.

My hand ran along the bamboo railing and I saw another flash. Why the overlap of Adrian’s voice, Reko’s bark, and the jazz station sounds like a fan blowing on its highest setting.

I lifted my knees high as the steps grew steeper. Flash. My refusal to wear bras. Flash. The moment I come home, I put on my cosy clothes of the softest cotton. Tagless, of course. 

I leaned forward and began to pound up the steps, breathing hard. Flash. Why I could never improvise in my jazz piano class. When it was my turn, all I saw was a blank screen that extended forever in every direction. Flash. The time I hooked up with a college friend’s boyfriend because she said she was tired of him talking about me, so could I please just fool around with him to shut him up? All of our friends shunned me afterward, saying I wasn’t actually supposed to do it. But, then why did she ask me to in the first place? Flash. My preference for attending Bug Club meetings (I was the founder and only member) over playing with classmates after school. 

Pumping my arms, my feet barely touched the steps. I felt as though I was floating up the staircase as I inhaled those memories and let them fill me up. Flash. How even now, thirty-five years after I coined the phrase in regard to my first dog, I will spontaneously shout, “Slobberdy Goop Handsome!” Flash. My love for thalisFlash. The quarter-century of eating the same Subway sandwich, put together in a very specific order. Flash. The constant rotation of “Frasier” … with closed captioning. Flash. Why I do this to my french fries:

How I Eat French Fries

I was almost there. The landing was in sight. I bounced up and up, springy and free. Flash. Why “Eine Klein Nachtmusik” always elicited images of playing hopscotch, galloping horses, exploding fireworks, and hiking boots skidding on dirt. Flash. Listening exclusively to Radiohead’s “The Bends” from 1999-2004. Flash. Reading Bridge to Terabithia nine times in one summer.

I leapt onto the landing and raised my fists to the sky, breathless, flushed, and giddy. “Why I am not able to ride a bike!” I shouted, shrugging off that torn jacket of shame.

I raced along the path as if sprinting on a track, trying to increase my speed and outrun the years of beration and loathing: the reproached child, the wayward student, the draining partner. There was never anything wrong with me after all.

It was like taking off a pair of someone else’s spectacles and seeing through my own eyes for the first time. And, oh, was the view breathtaking. Everything was suddenly so clear.

And so I began climbing again. I had the energy, I had the discipline, and, most of all, I had the drive. Because see, this wasn’t just about meWhat about my marriage? about all of our misunderstandings? I wondered. I suddenly heard footfalls and heavy panting behind me and turned. There was Adrian, who had crossed a bridge from his mountain to mine and was climbing with me.

We reached the next landing together and I held my hand out to Adrian, hoisting him up. As we caught our breath, I asked him if he remembered when, a few years ago, I had read that doing more than two loads of laundry a day could cause the washer to breakdown. I was distraught because I thought that meant if I did a third load in twenty-four hours, I would damage the washer.

Adrian had then explained to me that there wasn’t actually a limit on the number of loads, just that the guaranteed lifetime of the washer was dependent on average use. More than a couple of loads a day (more than average, in other words) would lead to more wear and tear and to a shorter lifespan, not to the washer immediately breaking down.

I had retorted, “No, that’s not what the article said. How am I supposed to wash all of our sheets in one or two loads? This is impossible!” I clenched my fists, my face tight. I liked my laundry routine of doing as many loads as I wanted before five o’clock, no exceptions or extensions. How had I not already damaged the washer? I remembered wondering.

We had argued back and forth about that and I had cried from my frustration, from hearing the frustration and impatience flick from his voice and sting me. Why am I always wrong when I am just relaying what I read? It was written by an expert, so how can it be incorrect?

We stood on that mountain landing, gulping in air, when Adrian told me he did recall that conversation. At first we were uncomfortable, standing on the edge, reliving the tension, the stiffness. But then he gave me his sweet, one-cornered smile and we began stretching our sore muscles. I announced in a loud voice, as I reached for my toes, “We just didn’t understand each other. You didn’t realize how literal I am and thought I was being intentionally obtuse. I thought you were being mean. Now, though, we work together.” We grinned at each other before Adrian crossed a bridge back to his mountain — we planned to meet there later for a picnic — and I continued my ascent.

I feel a cool wind lift my hair and look up. The top of that mountain is still far far away. I wonder if any people have ever reached the peaks of their mountains.

I stop mid-flight and turn around on the staircase to appreciate the vista before me, the valleys, the hills, the trails, the scorched land, and the plantlings that have taken root, unfurling in the sun. It is heady stuff, balancing on a precarious stone step, looking how far I have climbed.

 

 

© 2018 Saraswati Chand

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Deficient vs Different

Within the first few moments of my formal evaluation, I felt as though I were on trial and Dr. Devell was opposing counsel, deflecting my evidence with a twist of my words. He was also judge and jury. My job was to act as my own attorney and provide documents, examples, and histories to defend myself. I had to bring in witnesses, in this case, my husband, Adrian, to support my case. Opposing counsel ridiculed me (“I don’t believe you, yet …”); provided conflicting alternate theories (“Your instructors’ reports, your absences and withdrawals, and your grades suggest significant executive function deficits …” followed by “Your advanced degree indicates that you are fine …”);  had evidence suppressed because I gestured with my hands, was able to maintain a long-term friendship with Loverne, and had previous (mis?)diagnoses (“If you have OCD, then you won’t have autism, because the two are not co-morbid …”).

It was demoralizing. It was dangerous.

At one point, when I was crouched on the floor of my living room, picking up pieces of a glass I had thrown while in the midst of a meltdown, I looked up at Adrian, my face swollen from crying and said, “Why won’t he listen to me? Why won’t he read my words and believe them? Why does he want me to have social anxiety, bipolar disorder, obsessive-compulsive disorder, and attention deficit disorder instead of autism?”

Dr. Devell rescheduled on me for the third consecutive time because he forgot about our meeting and had double-booked. This would be the second time he rescheduled that particular appointment. At that point we had only met twice. Three reschedules over the course of two visits. Once, it took him a week to respond to my response to his reschedule, never acknowledging that he had missed the new meeting time I had suggested. He asked me for the seventh time to interview over the phone even though I had stated nine times that I have a difficult time with that mode of communication.

I ended the evaluation.

By that time, I was seeing my regular therapist on a weekly emergency basis as well as calling her every Wednesday to check in.  I met Dr. Devell to pick up some final paperwork and he and his supervisor sprung an outtake interview on me, like a surprise party in a nightmare. All surprise parties are the stuff of nightmares but this was the worst, because it came true.

I sat for forty-five minutes, staring at their mouths while they told me that it was all in my head, that I am just sensitive, and that I pathologize myself. It turns out they didn’t want me to have anything at all, except for hypochondria and a need for attention. The only thing wrong with me was me.

  • My previous professional diagnoses of bipolar and obsessive-compulsive disorders and the underlying symptoms were dismissed as nonexistent.
  • My history of executive dysfunction was not discussed.
  • My inability to understand subtext and the havoc this has wreaked were ignored.
  • My need for sameness and repetition were recognized and followed by a shrug of Dr. Devell’s shoulders, an “I don’t know …”, a downturn of his mouth.
  • My prosopagnosia, including the time I was unable to recognize my family in a photograph, was declared a product of anxiety, though not a pathological anxiety. No, this was an anxiety that I manufactured because of my delicate nature.

And so on and so on and so on.

Dr. Devell said that what I described supported a diagnosis of autism, but I was able to work and was married, so did not exhibit impairment. Then he defined impairment to me.

Then he defined impairment to me

He finally said, “You say you don’t feel _________________ but I think you feel _______________.” He smiled toothily at me to demonstrate his rapport with his patients. It was a brilliant show for his supervisor. At the end, Dr. Devell asked me if I had any questions. I sat, stupefied at his summary, and said “No”, barely able to open my mouth enough to allow the word to escape. It was a shield. Your weapons strike me but do not penetrate. 

“I knew you were going to say that!” he exclaimed in a sunny voice. “I expect that you will be sending me a loooooong email later,” he added grinning and watching his supervisor from the corner of his eyes, as if he and I shared some private joke. In reality, that comment was a reference to the sixty plus pages I had written and sent to him when I realized he wasn’t understanding my oral communication, which is sparse and unembellished as a winter tree, especially under duress. Sometimes even the “no” is impossible, my muscles painful and unable to move, my brain full of the black and white static of an exhausted television set. He had told me to write as much as I wanted yet never stopped grumbling about the length. Even when I cancelled the evaluation he said, “The other two experts on the panel have certainly not been able to get through your documents.”

The first problem I had with that evaluation was that my fear of being misunderstood, unheard, and negated yet again came to fruition. I found this blog post, which, while distressing and horrific, is also uniting, solacing, and I am utterly grateful for it. As one commenter wrote, “… I felt extremely vulnerable. When I was describing why I thought I may have Aspergers [sic] I completely bared my soul, and I was still not believed. This was SOOOO painful and traumatic for me. It should not be this way.”

The second problem I had with that evaluation was the emphasis on impairment and deficiency, as if people with autism are inherently damaged in some way. It seems that for me to fit his definition of autism, I must be broken not whole. I must be wrong not right. I must feel bad not good.

Why can’t I be autistic and happy? It is as though the standard for permitted bliss is a creek, a narrow trickle of water, and I am sitting on the banks. What if that creek widened and became a flowing river? What if there was room for all of us to swim? Some of us could be NT and some of us could be ND and we could dive or float or warm ourselves in the sun before jumping back into the cool, clean water … whatever felt good to each individual.

I know that I am autistic, not because I am a failure (in fact, I am not a failure, despite society’s definition!) but because I experience, interpret, and perceive the world in ways that are different than how most people seem to do. This can certainly be challenging at times. I am like my beloved Windows phone in an iPhone world, incompatible and unsophisticated. But life can also be glorious and pleasurable. Adrian has even told me that I have superpowers:

  • While my sensory processing sensitivities require close captioning to be on as I watch tv or the radio to be off when someone is talking to me, they also allow me to appreciate the tactile pleasure of my dog’s coat growing in cowlicks and the way that water reflects on trees.
  • I may not spend time socializing but my special interests establish a work ethic and focus that are unstoppable.
  • My rigidity creates a routine that is comforting to my family because my husband knows he will have clean pajamas after a long day at work and Reko is confident he will get his walk. Ladu knows that when I breathe a certain way, it is time for us to sit outside for lunch.
  • My stimming can cause my body to move in unexpected ways as the thrills of certain patterns and repetitions ripple through me.
  • Synesthesia allows me to see music.
  • Instead of remembering faces, I recognize people by a certain wry of squint of his eyes or the soft melody of her voice. I notice the details.

For over forty years I have struggled with not understanding what people expect, not knowing to turn in homework without being asked and not knowing to do the opposite when a girlfriend says, “It’s fine with me if you go out with him”; with relationships squeezing every drop of energy from me the way the constant whys of a three-year-old do to tired parents; with completing everyday tasks, such as preparing two dishes at the same time or managing my finances, which are as insurmountable as taking one giant step over the Rocky Mountains.

My whole life I have felt as though I was a black hole, pulling everything into the dread of my nothingness. Or a great monster, destroying the world around me with the bite of my sudden absence or a swipe of my clawed literalism. I cut myself. I gave myself second degree burns. I attempted suicide on three occasions, serious, scary attempts.

The realization that I have autism has led me — through research, support groups, and the compassion of my therapist, Adrian, and Loverne — to cope with challenges in healthier ways. I no longer shame myself with questions that begin with “Why can’t I just …”. I no longer allow others to shame me. Dr. Devell, an ABA practitioner, told me that I needed to take classes to learn “throwaway lines so [I] can pass in social situations.” Why? I don’t need to do anything except care for my comfort and not cause harm as I maneuver through this world.

Now, I am at peace. Knowledge is power, after all. I finally know that I am neither black hole nor monster. I am just different … not deficient. Why should I focus on impairment? I have meltdowns and shutdowns. I have experienced two autism regressions just in the past year. I also am tough. I give myself permission to appreciate the blessings.

I ask you, Dr. Devell, why should my happiness be a factor against this diagnosis?

Since those dark days of evaluation — and that is what my memory of them is: sunless and miring, as if I were suspended in a tar pit — I have been healing. At first, I shuttered my home and curled up in the soothing shadows. Now, the windows are open, fresh air breathing resilience into my spirit.

I am me.

I need a chair to reach all but the lowest shelves in my kitchen. I wear noise-cancellation headphones in crowded spaces. I am right-handed. I rub smooth stones that are hidden in my pocket when I engage in small talk. I always stand up straight.

I never realized how tall I am. I am so very very tall. I might just step over a mountain one day.

 

 

© 2017 Saraswati Chand

 

 

 

 

 

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Hope and Resilience, Two Vignettes

1.

Every Sunday, Adrian goes to pick up doughnuts — two apiece — for us to eat on our veranda, Reko and Ladu perched next to us like plump little birds, their keen eyes watching for falling crumbs to peck*. This week, I decided that instead of a plain glazed cake doughnut, I wanted a chocolate glazed yeast one. I still wanted my usual Homer doughnut and didn’t care if it came in cake or yeast form.

Are you with me still?

In my attempt at being as clear as possible, I utterly confused my husband to the degree that he had no idea what to get me.  I tried again, drying dishes as he made coffee.

“This week, I want the Homer, it doesn’t matter if it is cake or yeast, and instead of a cake, I would like a yeast.”

Nope, not any better.

In addition to generally being very particular about my food, I am vegan, so there is always an element of anxiety for both of us when Adrian picks up our takeaway orders. Of course, the easy solution is that I pick up the food, but the process is much smoother and quicker when he does it. My sensory sensitivity and topographical disorientation and routine require quite a bit of planning for me to comfortably leave the house.

Is it any wonder that I cook almost all of our meals?

After about two more circular discussions, mostly involving whether I want cake or yeast donuts, forget the whole Homer-plain-chocolate puzzle, I finally said, “Whatever is easiest for you is fine with me.”

hate when I do that. I literally threw the towel I was holding down and just gave up. Talking can be so hard. There is no such thing as a simple instruction. My tongue feels huge and cumbersome in my mouth and I just don’t want to speak anymore.

In a quiet voice, Adrian said, “Okay.” He remained sitting, his hands clasped.

I whirled around, deciding to take the risk. This is one of the greatest benefits of discovering that I have autism: my husband and I understand each other better … even if we don’t always understand what the other is saying. Because of that, I am willing to take big, scary emotional risks, like trying again to speak.

“Adrian, what am I saying that is so confusing? I am trying my best to be clear.”

“I just can’t tell what you want. You are saying you don’t care if it is yeast or cake and then you ask for yeast because you don’t want cake.”

I wanted to laugh at how absurd this scenario was. We were both so serious and we were talking about donuts. But we weren’t, really, talking about donuts. We were talking about talking. We were talking about communicating.

I started to cry, covering my face with my apron. “I am not mad, though it seems like I am. I am just frustrated. This may not happen to you often, but it happens to me all the time. I can’t even put in a food order without bewilderment and misunderstanding. Every conversation is confusing. It makes me want to not talk to anyone.”

Adrian said, “Oh, honey, I am sorry that this is so hard.”

“I’m sorry for making this so complicated.”

I tried again and fifteen minutes later, we were eating our donuts. Adrian read the news and sipped black coffee while I savored my chewy, yeasty, and airy Homer and chocolate glazed donuts with a big mug of green tea.

* Reko and Ladu always watch for spills, staring intently at the ground, our hands, and our mouths. I assure you, however, that they do not get table scraps and that includes donut crumbs!

2.

The other day, I spent almost two hours searching for a song. This song, which was quite popular a couple of years ago, had several variations of a melody that gave me the greatest pleasure sensations. Listening to it was like eating a piece of dark chocolate sprinkled with smoked sea salt, surprising and decadent.

I couldn’t remember the name, any of the lyrics (or if it even had lyrics), the band, the year it was released … nothing … except that it was a dance song with a horn instrument. I searched everywhere, mining reddit posts that asked if “anyone knows that song that has a dance beat?” or “can you tell me which song has a trumpet playing ‘dum dum duh duh’ in it?” I checked Billboard top 100 for the past five years.

I should have been working.

I suddenly recalled that the song was featured in a commercial with yellow animated creatures. A mobile phone commercial, I thought. Yellow animated creatures? Sometime in the last two or three years? “Minions!” I exclaimed, and began Googling.

Why can’t I just start working? I wondered, as I typed. Come on, I urged. You can do it. Switch tasks. Here you go …

The Minions have been in a lot of commercials. I watched a YouTube video that was almost ten minutes long and played every commercial they had been in, domestic and international. No song.

Hmmmmm, I thought. Maybe they aren’t Minions.

I had my own variations of a search that included “yellow characters”, “dance song”, “commercial” “phone” “horns” … and voilà!

I found it! I played it eleven times, swinging my hips, tapping my foot, snapping my fingers, wagging my head. I sang along with the variations, playing the drums on my dogs, kissing them to the beat. I twirled around and clapped my hands. I squinted my eyes so my room became a swirl of colors.

And then, I played it eleven more times.

I am playing it as I type this and see colors exploding in my head, soaring up and sliding down. My muscles are tightening and releasing, lips pursing and relaxing. I feel as though I am floating and roller skating and swimming and climbing a tree and lying perfectly still.

I am free, the sunlight on my face, wind lifting me up up up.

And when I sit down to work, I can hear the music playing in my head like a secret security blanket.

© 2017 Saraswati Chand

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It Just Doesn’t Occur to Me.

When Adrian comes home from work, I am usually in the kitchen, making dinner. After he greets our dogs, he approaches me and leans in for a kiss. Sometimes, I don’t even realize he is approaching me until I feel his lips on my face. Sometimes he says, “Can I get a smooch from you, sweetie?” and I put down my knife and cucumber or close the oven door and turn to him and press my pursed lips against his full, warm mouth.

A kiss from Adrian always feels like curling up in a bed with freshly washed linens.

“Hi, baby,” I say. The Boys, Reko and Ladu, jump on us, trying to get in on the action, so I bend down and kiss them all over their little furry faces.

Later, after Adrian changes out of his work clothes, he saunters into the kitchen, barefoot, and puts his arms around my waist from behind, nuzzling my neck.

“We are glad you are home” I say, as I stick to my rhythm and continue chopping garlic for his favorite dish, Greek chicken. I like to make that for him during times when he is particularly busy with work. It is the t-shirt and pajama pants of dinners: comfortable, nurturing, and warm.

He keeps his body against mine for a few seconds longer and then steps away, grabbing some cookies from the cupboard and heading to the media room to watch tv and unwind.

Later, he will caress my hand or kiss my head and say, “Thank you for dinner, love.” At night, he will come into my room and kiss me goodnight, touching my breasts if I wriggle around and smile at him.

If I come home and Adrian is already there, he will greet me at the front door. I usually have my hands full of grocery bags, so will say, “Hi, sweets! I got you lots of good stuff — cookies, ice cream, hummus, and Gatorade. And bananas. You have to eat a banana every day, okay?” I put on my cosy clothes: soft cotton, tagless, layered and then I fill the fridge and cupboards, fold his laundry, remind him to change his towels. I ask him about his day and listen to his stories, laughing about how Reko scampered and rolled across the neighbor’s lush grass when they went for their walk.

Sometimes, I might say, “Oops!” and stand on my tiptoes to kiss him. Other times, I may just observe, “I didn’t even kiss you hello, did I?” I say that as absently as saying, “I meant to sweep the floors this morning.” Later, when I am really tired, I will brush my teeth, wash my face, crawl into bed and go to sleep. I usually will call out, “Goodnight!” and sometimes add, “Aren’t you going to come hug me?” Sometimes, I will do neither.

Physical affection. I do not like it at all from people I don’t know. That includes shaking hands. Fist bumping (shudder). My stuff is an extension of me. Please do not touch that, either.

As for people I do know, I might crave tight embraces, especially from Adrian and Loverne. Their hugs are like my heavy blanket, anchoring me, securing me. But, I prefer knowing that they are coming. There is some kind of nearly subconscious preparation that I do, like the pre-flight cockpit procedure:

  • Arms ready to embrace?  
  • Skin prepared to touch someone else’s skin?
  • Sensor guards in place in case of incidental light contact, such as hair and clothing caresses?
  • Ears charged for the rustle of material, the unpredictable sounds of breathing, lipsmacking, grunting?  
  • Nose on alert for perfume/cologne/food/body odors? 

If permitted time to check off those boxes, I am ready for take-off and can actually enjoy and float into the hug.

I also love sex. Adrian and I have talked about that. Sex has purpose, it is a conscious act to feel pleasure.  It is like eating the yummiest food on my plate last, chewing slowly, experiencing the flavors and textures as fully as possible.

But physical affection? It just doesn’t occur to me.

I have an image of my mother washing dishes at the sink, her back to the kitchen. My father walks in and, much as Adrian does to me, puts his arms around her. Her physical self seems not to acknowledge his embrace. My mother continues with the dishes, her back straight, not leaning into my father at all. They chat for a minute as she looks out the window and he at her working hands, reddened by the hot water that washes away the remnants of the dinner she made for her family. He walks away, untouched.

When I think of that moment, I recognize that my father seems unfulfilled and that my mother seems cut-off from the world, focused on her tasks, her lists, her stories, her mind. I learned so much about social expectations through mimicry; Disney and “Three’s Company” were two of my relationship role models when I was a child. I promised myself that I would soften the way Cinderella does when her prince puts his arms around her, tilt my head up to receive my true love’s kiss. I assured myself that like Krissy and Janet, I would snuggle with my boyfriend, caress his face and arms with my fingers, press against his body with mine, even slide my hand in the back pocket of his jeans so I could feel his muscles flex as we walked.

I did these at the beginning and, as I recall, Adrian grew weary (or was it wary?) of my vacillation between needy Disney princess and 1970s sexual revolution gal. I, too, grew weary of the consciousness of physicality, especially once we started living together. For Adrian, it is second nature. He passes me in the hallway and his hand reaches for me, as if I were made of velvet. For me, it requires constant, conscious remembering. You are both on the couch, so touch the back of his neck. He had a hard day at work, squeeze his hand.

One day, I called out from my room, where I was nesting, “Maybe I should touch you more. I could grab your cock when we are in the kitchen together.”

Adrian said, “Or … you could just touch my head or shoulders.”

What’s the point of that? I thought. Just … put my fingers on his head or shoulders? Out loud I asked, “You mean like a massage?”

“It doesn’t have to be. Just touching is nice.” He waited a beat and added, “But you don’t need to, either. I know you love me, baby. Touching feels good, but I want you to do what feels comfortable to you.”

I emerged from my nest, flew to the media room, and hugged my husband, kissing the top of his head, his soft hair feathering my lips in pleasing ways.

For the most part, I still think of physical affection in productive/non-productive ways. A firm hug for me or a deep massage for Adrian (which I love to give him, his soft skin and thick muscles yielding like dough under my kneading) can be as productive and necessary, really, as deep breathing during stressful times. Putting an arm around his waist feels unnatural and self-conscious. Patting his bottom could go either way: in general, it doesn’t enter my mind, but, if he is wearing his plaid pajamas, my hands reach for him of their own accord, the material and shape of his buttocks begging to be held, if only for a brief moment, by my cupped palms. When he touches me, it feels safe, even if I don’t require it.

I talked about this with my therapist a few days ago, concerned that Adrian doesn’t know how much I love him because I don’t kiss and hug him. In the movies, when people don’t demonstrate their affection in physical ways, it is usually an indication that they are cold or out of love. My therapist, Dr. K, mentioned the languages of love and remarked that I show love through service, cooking Adrian his favorite food, keeping his living spaces clean, and giving him massages. Adrian shows love through touch. That sounds about right.

Dr. K also asked if I had any role models who demonstrated physical affection. Aside from television, film, and literature, I had a friend who, in the elementary years was as casually physical with me as if I were a part of her, touching my scabs, holding my hand, playing with my hair, pushing her thumb in my pocket to store a pack of forbidden gum. As comfortable as she was, I was always hyper-aware of her fingers, as if they were hot curlers, and I would shy away from them, afraid of being burned.

In high school, I had a friend who walked with his arm across my shoulders. I hated it. He was muscular, and his arm was as hard as a log. It felt threatening to me. Later, I had a tall, beautiful, vivacious girlfriend who would pat the top of my head and lift my ringlets up in her slender fingers. When she hugged me, I had to think about it in steps: 1). put my arms around her shoulders 2). pull our bodies together 3). don’t flinch from the sensations 4). squeeze 5). relax my muscles 6). squeeze again (she liked long hugs) 7). step away while bringing my arms back down to my sides. If I forgot the seventh step, her head would get caught in the arch of my intertwined fingers and we would giggle at my clumsiness. I literally learned how to hug from this friend. I was sixteen.

I understood Dr. K’s question: maybe I never developed a taste for physical affection because my parents weren’t particularly physical, with each other or us. My dad would shake my hand before he left for work and came home long after I was asleep. My mother would braid my hair, accidentally brushing my cheeks and neck, and occasionally put her fingers on mine for brief, searing moments.

But, I have two sisters who are as casual with their physicality as my elementary friend was. When we sit on the couch, they smoosh up next to me, their legs against mine, our shoulders lined up in a tight row. I shared a bed with one of them when we traveled a few years ago and woke up to her arm around me, her long hair flowing across my face like sea grass moving just under the surface of the water. I lay stunned, wondering how she learned to be like everyone else. I can’t even sleep with my husband.

I don’t know that I will ever have a specific, concrete reason for my aversion to physical affection, my lack of awareness of it. I have done some research into autism and touch and it is unclear, as well. Part of the problem, I think, is that we are looking for why. Why can have a shame or judgement attached to it. “Why can’t I/you just hug/kiss/caress like everyone else does?” Even the article I link here, which I think attempts understanding, suggests early intervention for children with autistic traits to teach them to tolerate touching as part of socialization, as if it is wrong to not like it.

What if we focused instead on what?  What does physical contact mean for an NT? It seems to mean closeness, love, security. What does physical contact mean for an ND? What does it feel like? For me, it means almost nothing unless it is that firm hug I seek for anchoring, particularly during overload or meltdown, or unless it comes from Adrian. Otherwise, it feels invasive and uncomfortable. It feels dangerous, not safe. My senses are scraped raw. I just want my space.

What if we treated physical affection the way we do roller coasters, or, better yet, big cities? Some people love them; some hate them; some think they are a nice place to visit but would never live in one. We can each figure out what is right for us.

This journey has helped me realize that I don’t need to know the why. Knowing the what is sufficient because it builds a bridge between me and the people I love. And that is what is important. Adrian and I show our love in different ways, but both are equally weighted. Just as when Reko nudges me and then bounds away, his tail waving like a flag, head turned to make sure I am chasing and when Ladu sits on my chest as I cry, his wise eyes unblinking and sorrowful, we may speak different languages but we all are saying the same thing.

I love you.

© 2017 Saraswati Chand

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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

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“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

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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

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