Difference: Aphantasia

Reflections on being unable to visualize. Anything. Ever.

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.

 

Author's Note

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.

Reviews

[Shimmerbliss/CAF]

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!

[Shannon]

Thank you for reading and the kind words. It was both enlightening and uncomfortable experience at times, to be sure!

[Tina H.W.]

I was really moved by what I read. I just found out something I never realised about myself...
Thank you for allowing me into another way of thinking and seeing things.

[Shannon]

Can you tell me more? Either here or in a message?

[Jacob Clifford]

I haven't encountered Aphantasia until reading this. I've never even thought of something like it. That would certainly make things different from how I experience them. It's certainly not easy being different or being on the outside, but what many people don't acknowledge is that differences make the world what it is. It's easy to point the finger at someone different and shun him, but that's not the way to do things. I can appreciate what it means to share this information with the world.

[Shannon]

Thank you. I don't actually see it as a big problem, just a different way of seeing the world (metaphorically , or course, visual language is pretty pervasive) and maybe some people's writing! I too love the diversity that makes out world so, well, big!

[busterlee]

Thank you for that. Thought provoking.

[Shannon]

Oops. I just suggested you try this one on your other comment.

[Carolynn]

Our differences are what each of us so very unique. I see no problem, or issue with what you describe here I only see a unique quality which is awesome. I have a daughter who has Tourette's and another one who has a big port wine stain birth mark on her face but they are precious, wonderful additions to our wonderful human race. I've never heard of Aphantasia but if you have to be "labeled" with something that is certainly a cool sounding quality to own :) You did such an amazing job from start to finish with writing about this topic. Your words were so well expressed and kept the reader's interest throughout. Enjoy your unique quality and thank you for sharing it with us :)

[Shannon]

Thank you so much. One of the tags I attached to this piece is neurodiversity. I do think it is not bad, just different, like so many things in life!

[Stan Lee]

Well done for expressing your feelings so well and sharing your newfound knowledge with us. Thank you.

[Shannon]

I know we have talked since, but thank you for this?

[Francisco]

Thank you so much for sharing this. I did not know anything about aphantasia. You describe vividly your experience, and your discovery of 'being' internally different to the people around you.
I think the most important thing is the way you are facing the problem to overcome it.
On the other hand, I am sure you have developed resources to compensate the lack of the "mind's eye".
I hope you have good luck in finding people who can help you to progressin you way to overcome aphantasia.
Thank you very much.

[Shannon]

Thank you very much. I feel like I can write future stories about it a bit more as narratives, like a short story that happens to be true, whereas this is a bit more essay format! Maybe include some fun brain quirks those of us who have this have also noticed.

[Francisco]

You are an extraordinary writer!!!!

[Shannon]

That's very kind.

[Somnium]

This is really cool!! this is the first time i hear about aphantasia. thank you for sharing your experiences.

[Shannon]

Thank you . people have been so interested in the topic, it will be hard to find a good follow up!

[Kaliope]

This was really a fascinating read, and a surprising one as well. The human brain and its functions/dysfunctions have always been a great interest of mine, and yet I haven't come across this particular condition - probably not a surprise, given that the first serious study was published only last year.

On some level I can relate. I'm a bit face blind, meaning I tend to have troubles recognizing and recalling faces, even people I'm closely familiar with. I first noticed it in elementary school when our teacher told us to draw our mums' face. Although the teacher certainly didn't expect a life-like portrait, she was totally baffled that I couldn't even remember the shape - was it a round face, or heart-shaped? Angular? Full? Gaunt? Big eyes? Small eyes? What kind of nose? How did it fit all together? I was utterly bewildered. I knew the hair color, the eye color, I naturally recognized my mum when I saw her... but visualizing her face was just beyond me.

Even worse when I saw my best friend after being separated for just a few weeks. She had cut her hair in the meantime and although she was standing right in front of me, I didn't recognize her until she spoke. Her voice I remembered, her face - no way.

Over the years I learned to compensate though - I started to make mental notes of distinguishing features and I became really good at remembering voices and gestures, so I can sum up the details. Nowadays I'm even pretty decent at identifying people in pictures, but I still can't visualize anyone's face in my mind. Not my mum's, nor my dad's, my siblings', friends', not even my husband's although I kissed him just five minutes ago. When I try to summon the image, it's just a blur. It's not really a handicap though. At least I don't think about it in that way, it's more of an oddity to me.

Yet occasionally I am just as lost as that day in school. Yesterday, for example, when a nice woman started to chat with me on the train. From the things she said I concluded that she's a colleague from the office (where I've been working for the past 12 years). I might have seen her a hundred times, but without the context of the surroundings I couldn't place her. Her face didn't even seem remotely familiar. Not wanting to be rude, I joined in to the conversation, always vague in my answers as to not reveal my cluelessness - a skill I've perfected early in my teens ;-)

But not being able to visualize anything, phew, that's a whole other level I guess. Especially as a writer I'm very visually orientated. Every scene I write, I see played out in my mind - like a short movie or a stage play and then I try to recapture it in words. So I think I kind of understand in some parts how you feel and yet I probably can't entirely.

However, I do wonder whether your feelings of being different during your youth were really due to this disability alone. Frankly, I have yet to meet a teenager who feels like they fit in and truly belong. I certainly felt like an alien abandoned on earth, and so did all my friends at the time. Adolescence is a difficult time for everyone, our bodies change and with it our moods and interests. Even our brain is still under development until the early twenties. And normality is just a myth in my opinion, everyone has their handicaps whether there are medical terms for them or not.

I'm in no way trying to belittle your condition, mind you. It certainly shaped your life and played a role in who you became, but it's just one of many factors that define you. If I may be so bold and offer advice: Accept the label with pride, in fact collect all labels that apply to you and in the end you'll have a colorful bunch of labels that collectively prove the one thing you always knew: that you are unique in your complexity.

Gee, sorry, I didn't mean for my reply to be that long, but it's such an intriguing topic :-) I guess I should say something about the style of the piece as well, hm? Well, I liked it a lot. It was well structured and a highly enjoyable read, maybe go a bit easy on starting sentences with conjunctions.

Thanks for sharing!

Cheers,

Kali

[Shannon]

Thank you very much for taking the time to read this. And penning such a thoughtful response. I started with what appears to be a unique topic that generated a fair bit of interest. The rest of my life is not so interesting!

[Inject Positivity]

to understand it properly i googled Aphatasia and now i can truly understand what is the main struggle in this brain disorder.... i can feel how hard it is for you....i knew about this problem as we had a movie in our country called "Tare Zameem Par" where the child cannot understand the difference between b and d, cannot picture anything in his mind, having problems with studies.... a very thought provoking write and it certainly gave me more knowledge of it... thank you for such a courageous write....

[Shannon]

Thank you for your time. I am going to spend a bit more time looking at your poetry. I wonder how differently I experience it than those who conjure up magnificent images?

[Inject Positivity]

not too much i guess... there is a benefit of not being able to picture something in mind and that is picturizing worrying future.... you are welcome mam... my pleasure...

[Inject Positivity]

its inspiring to see you are happy with it and moving on with life... this is called human beings true will power...

[Shannon]

Perhaps it would be different it I had ever known different. Or if my brain had some further challenges to overcome. But in reality, my brain serves me very well in other areas! Thank you for your support!

[Inject Positivity]

as the old saying goes if one door closes then hundred doors will open.... its a learning experience for me...

[Inject Positivity]

i read it once again, as im looking to get a birds eye view of that disorder...i have a frnd here he has quite similar problem but he scares to tell his mom dad...