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

I've never heard of the term; and I must admit that I didn't know this existed. Excuse my ignorance, but I'm curious to learn how exactly you imagine things; words, concepts, sensations?

Posted 7 Years Ago


Wow, I'd never heard of that condition before. I bet it's very rare! Your reaction to finding out that it has a name is especially interesting to me, since I've recently been learning about things like this.

Thank you for sharing your story!

Posted 7 Years Ago


Shannon

7 Years Ago

Thank you, as I have been on the Café and writing I have learned a fair bit about how this impacts.. read more
Not so strange as we might think. Me for instance. I talk about seeing pictures and then transforming them into stories. They are not pictures,images, icons, or even odd glowing areas and certainly not images of words. Others tell me that my writing, especially poetry, produce images in their mind. So they praise the imagery. What do they see? People talk about dreams, whether color or black and white. For myself the experience is not of images, it is something else. Something more that a picture or movie playing. It is more that feelings of temperatures or wet or dry, more than smelling bacon or perfume, more than sounds, voices, music. The entire package of a dream or story concept come as a unit that exists out of time as we know it. A dream may seem to last for hours or days, yet actually last a millisecond. The same for a new story. It doesn't come through the 5 senses. Those are only a tool used to describe the experience. I watched a PBS show, Nova, I think, about the brain. They don't understand how we even see with our eyes. Neurons connect, faster than light, to produce what we call seeing. There is no picture in our head. Our eyes can be easily deceived, proven fact. So, what do people who get pictures actually see, when everything we actually see is an illusion of our conscious mind. I have night-blindness, even in dim light. Yet if I close my eyes I can find my way through unfamiliar settings. I can draw(copy) what I see in the world, but Not from memory. Is that strange? Maybe so. It doesn't bother me because I comprehend things that others don't even take the time to notice, after pointed out. I chalk it up to the fact that, although we are all the same in most ways, we are also each unique, in very special ways. The good-book says to celebrate the differences,(not tolerate). We are all so similar that the differences constitute reason to celebrate. All the while, people develop hatred for anything different, and some feel less than, for appearing different. Everyone is different from the rest in some ways, yet they can't accept that and even hide it.Then they vilify others. What a sad commentary on our collective consciousness, that this is perpetuated in an endless loop. I for one, am glad that you see yourself as different. Cause for celebration.Be glad too. You are special and unique. Make use of the gift, to bless others. This is what I glean from this story. Thank you for sharing.

Posted 7 Years Ago


Shannon

7 Years Ago

Thank you for spending the time to read and send such thoughtful comments. I really like how you se.. read more
VALORMORE DE PLUME

7 Years Ago

I found it stimulating. A succinct response didn't feel appropriate.
I never ever heard of Aphantasia. Wow! You are a winner in my eyes, having the difficulty like that and still doing things like normal people is itself a miracle. Thank you for sharing your life's hidden story here which lot of people do not find the courage to share. Keep writing!

Posted 7 Years Ago


Shannon

7 Years Ago

Thank you very much, Selena. For me I never realized there was a difference. Appreciate the time .. read more
Selena D. Harper

7 Years Ago

You are very welcome, it should be me who need to thank you for sharing your story with me.
Very nicely done. I thought you explained aphantasia very well. The introduction also led in well to the rest of this story.

Posted 7 Years Ago


Shannon

7 Years Ago

Thanks. I feel like sometimes I think a little different about writing, possibly connected to this.. read more
Wow! I learned something today. I did not know this condition existed. It is frustrating not being able to communicate without knowing your words - just a feeling of something is wrong, but not able to figure out what that something is.

Sometimes labels are just labels - they aren't you, but a part of you. It is comforting to find someone who can relate to your struggles but we don't like to be boxed in the label. Well, for me that is. :-)

Thanks for sharing this story and enlightening folks on this condition.

Posted 7 Years Ago


Candace Cloud

7 Years Ago

I understand your motives. I am going to have to read the article your son pointed out for you. I mi.. read more
Shannon

7 Years Ago

I prefer to see things too. Because I can't create it in my head. When people tell me this I get s.. read more
Candace Cloud

7 Years Ago

Its all good - we all have our ways of learning and dealing with our short falls. God usually gives .. read more
This is a remarkable story, and well written. Amazing to me that you even like poetry, as I rely so heavily on visualization when I write, I am feeling like what I do must be another language to you. You have found the words to describe it so perfectly, that even though I cannot possibly imagine it, I can understand, like a blind person telling me how they perceive colour. Truly, I am glad to have read this story. An edit to this-- I went and looked up Aphantasia and did the quiz -- I score in the upper opposite -- hyperphantasia -- it is called and they suggested I contact them for the study at Exeter. Now that has really got me intrigued, and explains a lot why people call my poetry very visual -- huh, I didn't know everybody didn't think that way. Thank you for sharing your knowledge and your personal "difference".

Posted 7 Years Ago


Shannon

7 Years Ago

Thanks K. I sometimes try to get my "poetry friends" to read this one, so that they understand whe.. read more
I as well can relate to this; though perhaps in a different way... I can read a page a minute. Yet, when I try to visualize a mathematical concept, all I see is a blank page. I am very intelligent, yet it is just in a different direction. I can read, comprehend, assimilate the most complicated text.... Then turn around and translate to others at their own level of comprehension. Yet give me a geometry problem and I totally blank... I can figure it out, but, it takes time, effort and frustration. It makes me feel like an idiot. I try to explain it but people don't get it. So... I am very impressed with the way you wrote this. It sums up my own frustration and inability to explain... Anthony Wolf ,'', ^@@^ ,'',

Posted 7 Years Ago


Shannon

7 Years Ago

Hey thanks, Wolf. I do believe we are way more alike than different in all the ways that matter. .. read more
Wolf_Lord

7 Years Ago

My Pleasure... and you know, my wife and true love balances that out. She is almost a mathematical .. read more
Shannon

7 Years Ago

I feel like you should show her this piece, complete with comments... ☺
I can understand this. It hits each individual different, so the best way I can relate is from a Calculus class. The teacher asked a question. I told him the answer. He was shocked by how quickly I answered.
"How did you know?" "It was obvious." I had jumped about three steps. I was not paying attention to what he was trying to teach, I just saw the end result. It was all from how he was showing it. I don't know if this makes sense.

Posted 7 Years Ago


Shannon

7 Years Ago

Thanks for reading. I think you are right most people probably relate in one way or another. When .. read more
Jon Roggie

7 Years Ago

You asked me how I review. It is not only the words. You have to see it. I saw it.
First off, I just wanted to state that I've never publicly shared a story I've written nor commented on as I do not feel qualified or experienced enough to critique. But I will make an exception for this story as you had politely requested me to give it a read. I will share my honest reaction and feedback.

This was a beautiful honest piece. I honestly didn't realize you were female (until I saw you had mentioned he in a different piece and obviously after reading this piece). Of all the judgment and things we tend to be labeled, I hadn't realized that having red hair would be something so foreign to somebody else, and this gives a unique insight of the culture of Canada and just how vast and diverse it can be and such a raw introspective of just some of the chapters and experiences of your life. I can definitely relate to anxiety (personally struggle with it on a daily basis to point I've allowed it to imprison me into agoraphobia) so I always empathize and sympathize for those whom always struggle with anxiety, depression, etc. even though anxiety seemed to a smaller obstacle in your path than you didn't let anchor your down. I am surprised by your age even though it never crossed my mind, nor had it ever crossed my mind that you're a mother or wife. I am in my late twenties, and for some I reason I just assumed you were similar in age but just wiser and a better although I've learn age and wisdom are far from related but a great combination to possess. Both confusing and overwhelming in their own ways I'd imagine...
What a turning this point to this story, and I am glad that your son had showed you that article. A big fan of Penn, I hope to listen to that podcast to even get a better understanding. Such a interesting and unique experiencing coming from somebody whom wears their heart on their sleeve, can walk into a room and pick up and feel other people's emotions, and completely unable to turn it off nor forget the negative experiences and negative details. I cannot imagine your perspective, but I'd imagine it's a blessing and curse similar to me.

Such an enlightening experience to read even though I'm left wondering more and trying to comprehend what it must be like. A part of me wishes for it to forget the pain that torments, yet it also sounds frightening because it seems too unknown and would take away everything from me that makes me my unique self, for better and for worse. I am sure it would be a similar (yet opposite) experience for you if you were in my shoes, but I feel we can learn and understand each other better by sharing each other's experiences. This is beautifully honest, and truly has me thinking from a perspective I never envisioned and still have difficult conceiving.

I suppose the biggest moral and lesson to be learning from your story and this piece is that it's always better to speak up, to reach out, and to learn more in order to better understand and accept what is happening in our life and what we are for better and for worse. Thank you for recommending this, it was very compelling and moving to read a big part of your story. I had probably never would have heard of Aphantasia if I had not seen this, and I am left viewing my own life from a different perspective with a greater appreciation for you and your writing as I begin to learn more about yourself. Thank you so much for sharing this with the world, it is so comforting to know that there are others out that we are not alone no matter how we may feel and fear that it's only us. It sounds like you have great support with your family, and I hope your life continues to improve as you continue to learn and interact with others sharing similar experiences to you. Your honesty is commendable and I truly appreciate you taking the time to write this and share your journey. Powerful.


Posted 7 Years Ago


Shannon

7 Years Ago

Thank you for taking the time to read and share so much.
Lost, n'MT

7 Years Ago

You're very welcome, thank you for sharing.

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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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