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What It's Like to Experience Aphantasia

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I frequently write about mental health topics, particularly ones that directly affect me because I firmly believe it is easier to explain conditions when you write what you have experienced firsthand. Though more often than not, there are mental health-related conditions that exist outside what would be considered an illness or disability. One such mental condition, one that I personally live with, is aphantasia.

Growing up, I honestly did not realize that my mind worked any differently from anyone else’s. When I’d sit in a classroom with my fellow classmates and the teacher would tell us to imagine something in particular, my mind would race through a database of sorts, pulling out words to describe whatever we were instructed to visualize. I did not know back then that my mind was “different.” I had assumed that was how everyone’s brains worked because nobody had ever told me any differently.

I was in my early 20s when I first discovered just how differently my mind worked. I was a young mother back then, watching random children’s programming with my toddler. On one random educational children’s show, one of the characters suggested all the kids close their eyes and imagine something or another, walking children through some exercise in imagination. They ended by asking the children watching if they could see it and what colors had they chosen for their creations.

I remember sitting there completely dumbfounded, one of those “wait… what?!” moments.  The whole concept that anyone could create images within their head, actually see pictures, blew my mind.

When I close my eyes, all I see is blackness.

When I try to pull up a recollection of something, all I ever get is a long series of words, of descriptors. The best way I can describe it is that my mind is like a vast room of file cabinets, all containing various data. Whenever I start thinking of something, my mind races, looking for facts to connect to the recollection in question.

If someone tells me to close my eyes and imagine an apple, I never am able to see an apple in my mind. Instead, an inner dialogue starts, spewing out everything I know regarding apples. Apples can be red or green or yellow. They can be solid colored or speckled or mildly striped or splotchy in appearance. There are crab apples as small as a cherry and honeycrisps as large as a grapefruit, but most apples are around the size of a fist. They are somewhat round but not completely. They have little bumps on the bottoms, similar to the base of a pepper. They are usually sweet but some, like granny smiths, can be tart. The best time for apple picking is the fall. Apples can be used in recipes for…

My mind races on and on, yanking out every fact it can find that has anything to do with an apple. There’s times it’s almost like a data overload because so many facts will surface at once. After all, I know what an apple is. I’ve had many apples over the years. But at no point can I conjure up even a simple picture of one.

When my brain first made the connection that other people could see things in their minds, I couldn’t help but feel like that was the abnormality, because the very idea felt so foreign and alien to me. For months, I questioned friends with seemingly stupid questions. “If someone tells you to close your eyes and imagine an apple, can you actually see one? Like not just know what an apple is, but clearly see one in your head as if it was sitting right there in front of you?”

Again and again, the answer came back as a resounding yes, of course they could. Everyone I knew seemed to be able to conjure up images in their brains like their own personal movie screen. Everyone, that is, but me. It was like that one game we all played as children where one of these things was not like the other and it turned out I was the odd man out, the one that was different.

Over the years, I’ve periodically looked for others who might be experiencing something similar. As my children grew older, I even questioned them to see whether they had the ability to visualize. I do not know whether the condition can be hereditary or not, but none of my three children share this trait with me. They can all visualize just fine.

It wasn’t until recently that I even stumbled across the term aphantasia. For decades, I just referred to it as an inability to visualize, doing my best to explain that all my brain could ever muster up was a series of words to describe and connect things but never a single picture. From time to time, I would randomly still ask others if they could visualize in their mind’s eye, hoping to find someone else who might be like me, but I never had any such luck. That is, until around two years ago when I stumbled completely by accident onto a research study being done in the UK for aphantasia.

I was beyond excited. I was elated. I was no longer some random ugly duckling, alone and unique in all the world. My brain wasn’t broken, flawed, some freak abomination that existed outside the realm of everyone else. It turned out this was an actual medical condition that affected as many as one in 50 people to varying degrees.

I found myself reaching out to the scientist that was heading the research study into aphantasia, explaining that it affected me, too. I was sent a series of questionnaires to fill out for him to add to his research data. We emailed back and forth a few times over the next few weeks. It was wonderful just knowing that I wasn’t “broken” or “crazy” after all. When I found out about my MTHFR genetic mutation a short while later, I contacted him about that, as well. I do not know whether it is in any way related, but I wanted his data on my case to be as complete as possible.

Aphantasia is not considered a disability. It is more of a nuisance. Where other people can immediately conjure up images from thoughts, my brain is left to sort through piles of data, an inner dialogue of words, for what is relevant to every situation at hand.  I often joke about how, though most people put in their two cents, I stop closer to a quarter, but in actuality that is just how my mind has always worked. I have frequent data overloads in my head and tend to ramble on subjects until I get it all out.

I’ve been complimented numerous times on my writing, how people love the comparisons I draw and the flowery words I use to describe everything. It is not anything I have ever done intentionally. My mind is just chock full of words because it is void of imagery.

Over the years, I have felt the impact of my aphantasia in many ways that other people take for granted. For instance, I am absolutely horrible with facial recognition. I might look at someone that I have seen dozens of times and have trouble putting a name to the face because they have changed something as simple as their hair color, gotten a hair cut or put on some weight. I know that I know them, that there’s something about them that is familiar, but until I dig through the databases in my mind looking for other connections beyond physical traits like their eye color, nose shape or height, I’m often at a loss. I wait for someone else to mention a name or a location or occasion connected to them, something to make that connection click.

I have no memories of my past, at least not in the way that others experience them. Others can close their eyes and be transported back to a sunny beach they visited years ago, reliving the beauty of the moment. For me, all I have is a stream of facts. I can tell you the approximate dates I was there, can tell you how blue the water was, comparing it to other recollections I have to similar shades of blue. I can tell you how warm the air felt by comparing it to other types of warmth, but I can never relive that day. My mind catalogues data. It does not retain memories.

Perhaps the worst affect that I feel from aphantasia is the weight on my heart. When my children leave to go to their dad’s house or to go back to their dorm, I cannot close my eyes and picture them here again with me. I can look at a photo of them but that is the only image I’ll have until I see them again. I am very partial to photographs and videos because it gives me actual glimpses back in time, something my own mind cannot do.

I lost both my parents in 2010. I don’t possess any pictures of either of them so their faces are lost to me forever. I can list off basic facts like the crows feet that spiderwebbed beneath his eyes or the fact that my mother used to furrow her brow when she was upset or deep in thought but I can never close my eyes and picture their faces ever again, can never see the way the corners of my dad’s mouth would turn up into a smirk when he was about to tell a punchline of a joke or see the way my mother’s nose would crinkle when she would sample a taste of something she was cooking. I know those things happened because the words are locked away in my brain’s database, but the actual images of those moments have been lost forever to me.

Over the years, I’ve come to realize just how often everyone else relies on visualization and it makes my condition feel even more glaring. Last year, for instance, I began taking meditation classes hoping to add to my mental wellness toolbox. I sat in a group with several others talking about breathing exercises and conscious breathing. Then it came time to begin our first actual group meditation. We were all told to close our eyes, uncross our legs, loosen our muscles, to place our feet squarely on the floor and rest our hands flat on our thighs. We were guided to pay attention to our breathing, the slow in and the out, to feel the air around us and to be in the moment, fully aware of ourselves and our bodies. So far, so good.  Then the instructor told everyone to imagine a small ball of light glowing inside themselves, in their core, to see its brightness, feel its warmth, to imagine it growing inside us, filling us, to see the light expanding beyond ourselves, encircling us, filling the room, expanding outwards, continuing to grow.

And that was completely where she lost me. When I closed my eyes, all I could see was black. There was no glowing orb and there never would be. I had words within my head to compare to lights with a soft glow or of lights expanding similar to the approach of dawn, but no matter how hard I might try, I could never visualize that ball of light, or roots connecting my feet to the earth to center me or any of the other visualizations commonly used in meditation. Meditation techniques commonly used by everyone else are completely lost on me because they rely heavily on visualization. For me, meditation has become about situational awareness, of feeling my breath flowing in and out, of feeling my heart beating and feeling the sensation of the air on my skin. I cannot imagine and visualize anything flowing and growing around myself, so instead I use meditation to pull myself into the here and now, to concentrate on my body in the present and to try to silence my mind.

In the last year, I have realized my aphantasia goes beyond an inability to visualize. In another “mind blown” moment, I had someone ask me whether I could mentally recall other senses, such as the way things tasted, smelled or felt. I realized all recollections of those senses were just words, as well. I could tell you that I remember the sweetness of a cupcake or how well water smelled similar to hard-boiled eggs or how a fleece blanket felt soft and furry like a baby animal. But they are all words. I cannot taste that cupcake again nor smell that egg smell nor feel the sensation of that soft fleece again on my fingertips. I have the words to describe them all because I have experienced them all before, but I cannot relive any of those moments again.

Perhaps the only sensation I am able to recall to any extent is pain and that is very limited. I struggle with post-traumatic stress disorder (PTSD) due to physical and sexual abuse over the years. There are times when I have flashbacks, reliving those moments of abuse all over again, where I swear I can feel the blows again. I am not sure if it is a matter of muscle memory tied to the PTSD itself or if it is a genuine recollection of some sort. All I know is that it only occurs during flashbacks and it is only physical pain that my body can recall. Unfortunately, following PTSD flashbacks, I am physically, mentally and emotionally exhausted so I have never been able to delve more into those recollections more.

These days, I often describe my aphantasia as a type of blindness in my minds’ eye. I think back to watching “The Miracle Worker,” the story about Anne Sullivan teaching a young, blind and deaf Helen Keller how to communicate. Helen Keller couldn’t see the water because she was blind. Again and again, Annie Sullivan signed the word for water into her hand until her mind made that connection.  She could not see the water, would never see the water, but her mind was able to make that connection. That word meant water. That is how aphantasia works within my head. I close my eyes and my minds’ eye is blind. My mind cannot see the water, cannot see an apple, it will never see anything. But it makes those connections of words to items. I might not be able to ever visualize an apple, but my mind possesses the words to know what an apple is.

Aphantasia is a condition where the brain is unable to form images or visualize. It is a condition that often leaves those struggling feeling broken and alone, as if their very brain is flawed and doesn’t work like everyone else’s. Current studies show that it affects approximately one in 50 people. It is not considered a disability or an illness, but rather more of a hindrance or nuisance because it affects a person’s overall quality of life. Unfortunately, though, there is very little research currently available on the subject to explain what causes it nor is there any cure.  It is just something that I, and many others like me, have learned to live with over the years.  Whenever we close our eyes, our world fades to black.

Follow this journey here.

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Unsplash image via Quinten de Graaf

Originally published: June 11, 2018
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