Difference: Aphantasia

Difference: Aphantasia

A Story by Shannon
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Reflections on being unable to visualize. Anything. Ever.

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Difference. On the outside, I have not had much personal experience with “difference”.  I am white, middle class, Canadian.  Being a redhead has made me stand out a bit, especially as a child.  As an adult, I wear the label obese. But neither of those traits are really about me, more about the outside package.  I have experienced some peripheral and vicarious racism. I had a northern Canadian experience once, in my youth, where some of the elders had never seen a person with red hair. One old woman even walked up to me and touched my hair, all the while muttering to herself in a language I have never spoken. But the reality is, I was able to quickly step back into my safe space of privilege.

In my life, I also know many people with brain differences.   Some of my work over the years has included people who learn differently, have cognitive challenges, or mental health concerns.  But until recently, I did not have the words to describe what may actually be a fundamental difference in the way my brain works from the majority of the world.  Simply put: I do not think in pictures.  In other words, I do not visualize or have a functional “mind’s eye”.

Let me back up. In my younger years, I sometimes struggled with anxiety.   As a young teenager, I can recall being absolutely enraged and distressed when someone tried to teach me standard visualization/relaxation techniques.  I hated sitting with my eyes closed.  I did not have the words to explain it.  This was when I first became aware that: a) I was different b) I did not understand the difference and c) no one else could see or relate to this difference.

Fast forward 20 years.  During that time, I: received honor role grades in high school and completed a bachelor’s degree, got married, got a job, a mortgage. In other words, I am, in many ways, rather unremarkable.   I, like many people, have “quirks” that have become family jokes.  I can’t rearrange furniture or art in my head.  I don’t connect names to people well.  I try to put things in the car that can’t possibly fit.  The list is actually pretty long, but they all point to the same thing

A few years ago, in my mid 30’s, I had a conversation with my husband that changed the way I see myself in relation to those around me.  I always thought “visualize” was a metaphor or an analogy for “think about”. I had no idea people can actually see things in their heads! I stared telling people about this.  I was mainly met with confusion.  People were kind, but clearly could not understand.  That was when I realized: d) I could not communicate this difference in a way others could understand, because our experiences were extremely disparate and I did not have the language.

In July 2015, things changed in a rather jarring and, ultimately, amazing way.  The New York Times science pages published “Picture This: Some Just Can’t”.  Exeter University had identified and labeled this lack of visualization as Aphantasia (it is kind of amazing that we had so little understanding of the brain in 2015).  My son showed me the article, which I promptly ignored.  A few weeks later, I had a startling realization: I was avoiding a label.  I spend a lot of my personal and professional life normalizing labels as a way to help others, and yourself, understand and cope better, while assuring people labels in no way define a person.

So I read the article.  And cried.  I joined the ongoing study at Exeter.  And directed those around me to the article. I listened to Penn Jillette (you know, the eccentric magician) describe his brain processes, which are so similar to mine, in his podcast from June 28, 2015. And I started answering questions to the best of my ability: yes, I have a good memory and can describe things in a way that makes people think I can see them, but I can’t go back in my brain and check details, like what someone is wearing, unless I have made a mental note at the time.  I think in thoughts or words, but not in spoken words.  I believe I dream normally (with visuals), but I can’t be sure, as I cannot remember them that way.

I have learned a lot from my process. Because I believe that the human experience bonds us all and that we are all way more alike than different, I started relating my experience to that of others.  My “difference” is internal and does not express itself in any observable way.  Even when I tell people, I never experience discrimination or hate, just curiosity and sometimes disbelief.  I do not have to fight for my basic human rights.  I am in no way trying to minimize these realities for other people.

But there are some interesting similarities, too. As a youth, when I was not heard, I quit trying to communicate what was going on with me. I felt like “other”, slightly out of step with the world around me. When I finally identified what was different, I still could not talk about it effectively, because I did not have a common frame of reference with those I was trying to tell about it. I have felt the discomfort of people being fascinated by something that is just a part of me and hard to explain, while also being excited by their genuine interest. When someone offered me both a frame of reference and a community in the form of a label, I initially rejected it outright. Finally, I have found some excitement in finding out there are others like me. I have yet to tell anyone about this, who says, “oh, ya, me too”, but I look forward to this day.

 

© 2016 Shannon


Author's Note

Shannon
Please have a look. I love to share human stories. And I do welcome questions.
Update: July 2016, the last sentence is no longer true. I met someone who not only seems to have Aphantasia, but did not know.

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Featured Review

I had never heard of Aphantasia before, so I searched it before reading so as to have a basic understanding. My search brought me to the very article you mentioned in your piece. It is amazing that this condition had not been recognized properly until 2015. You have done a wonderful job of writing this in a way that informs and is at the same time personal. There are times when in defining something that is peculiar to ourselves (or that we feel is) and giving it a name can actually be quite comforting. To realize that we are not alone in our struggle with it and to become connected with others who will be able to relate to what we experience can open up a whole new perspective. Comparing notes and experiences with someone who truly understands, instead of someone who does not have that frame of reference, can be very enlightening. Many things about each of us are unique in the blend of the totality of ourselves, but when broken down trait by trait it is amazing how many disparate groups we can fit into. This was a wonderful read and so well done. Thank you for teaching me so much more than the definition of a new word!

Posted 8 Years Ago


2 of 2 people found this review constructive.

Shannon

8 Years Ago

Thank you for reading and the kind words. It was both enlightening and uncomfortable experience at .. read more



Reviews

wow, i'm glad you feel you could share this! it is certainly interesting, i had never heard of this before. it sounds as though there should be some sort of push to make this more common knowledge as it is scary to think how many others, like you , are suffering in silence, not understanding or being able to explain why they cant do what others take for granted...although i must confess, the way you explained trying to stick things in a car that won't possibly fit did make me smile...i had visions of you stood there, scratching your head in perplexity with a ten foot sofa and trying to cram it in a tiny car..i do apologise i just found the way you expressed it quite humerous. are there any techniques you can learn to help aid you visualise or is it something you simply have to just get on with? the brain is amazing, how it functions so differently for everybody! thank you for teaching me something new :)

Posted 8 Years Ago


1 of 1 people found this review constructive.

hcarson

8 Years Ago

its such a crazy concept, from the point of view of someone that has always taken it for granted tha.. read more
Shannon

8 Years Ago

I know, it is hard to talk about how our brains function without a common language or experience!read more
hcarson

8 Years Ago

ask away..i will tell you what i can...i will tag u in anything that seems interesting from what you.. read more
I loved your piece of work . It really taught me a lot !!


Posted 8 Years Ago


1 of 1 people found this review constructive.


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2812 Views
42 Reviews
Added on March 12, 2016
Last Updated on July 8, 2016
Tags: Difference, neurodiversity, Aphantasia, nonfiction

Author

Shannon
Shannon

Canada



About
I like to explore the world through the human experience, at once both varied and singular. Reading, writing and meeting people makes one's world larger. I enjoy connecting with people, learning.. more..

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