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!

[Papaya]

Ok, I get the comment you made the other day now! This is new to me so thank you for sharing.

[Shannon]

Thanks for reading. So when you say you can see it, that's a little victory for me!

[Papaya]

Lol. Yeah, I guess it would be. That's really neat. :)

[Ufi Auttorri ~ Amy C. T..]

First, thank you for writing this. It is most intriguing to me, for various reasons. If you don't mind, is it fiction or reality? If reality and it is how your mind works then I have some questions that I do hope you will answer. For example, how do you react to the word "me?" Do you have internal sense of "self" and if so is it purely verbal, descriptive or could you actually draw a picture of yourself without looking in a mirror? Potentially there are other questions I might ask but I would like to give you time to consider these and perhaps reply. --Ufi

[Shannon]

Thanks for the read and the interest. This is absolutely true. Let me think on your questions. I will try to put them and others you have in words (both for you and sometimes myself, as well).

[Dave]

I salute your ability to be so forthright about your Aphantasia. I don't believe I've ever worked or taught, I'm a retired teacher, anyone with your condition. Perhaps I did and none of us were aware of its existence. Personally I love to read and an important part of that is visualizing in my mind the various characters or scenes. As a child I loved to listen to the radio "action shows" and like thousands of others probably had our own mental image of the hero of these. I shudder to think of all that you have missed and are probably still missing.

Thank you for the insight.

[Shannon]

Thank you for the read. I don't miss it often, as it is normal for me. And reading is its own experience. Which maybe other people don't get to experience. I am always open to questions.

[mattavelli]

So, do you prefer movies or books? Do you enjoy visually descriptive writing?

[Shannon]

I like both, but they are very different things for me. I don't get pictures or a movie in my head when reading.

[Taylor]

How very interesting. Thank you for sharing this glimpse into Aphantasia and for revealing how something so fundamental to your "operating system," so to speak affects the world from your eyes. I suspect that as more is learned about the brain, we will find that there are a myriad of these differences in visualization or non-visualization. Communication seems easy because most of us can just sputter away and think we've communicated, but in reality, it's really difficult to help someone else know what you really mean. Just try giving a set of directions from point a to point b. There are ways of saying it, ways of hearing it, ways of interpreting it.

[Shannon]

Thank you for reading. Now you know the whys of my take on your work.

[Taylor]

Yes, I was going to send a private message (with a smile). Tumbling pepper and lemons wouldn't mean a thing if you couldn't see them. Difference reminds me of the many shards of brilliant glass that make up a wonderful stained glass window. The next time you look at a stained glass window you'll know what I mean. You must be the crimson.

[barleygirl]

This is one of the most enjoyable & well-explained personal essays I've read in years! I love this! The way you start out, explaining "differences" in a more general way, really sets the stage for your revelation, which is a huge mystery to most of us, I'm sure. You've given us tons of ways to relate to how your mind works & how it must feel to be inside it. I love the matter-of-fact tones, no feeling sorry for yourself or making it overly dramatic. You "normalize" your condition thru your manner of explaining it. I really love your last sentence. It's so reassuring when we find out we're not the only one. Even tho labels can be damaging in many cases, sometimes it's reassuring to find out there's a name for something you've been plagued with for years. I felt that way when I found out I was bipolar. It gave me a reference point to start to learn how to work with it so it didn't mess up my life so much. This is a very on-point & intelligent discussion, even quite visual, despite your difference! (((HUGS)))

[Shannon]

Thank you very much, barleygirl. Having this piece receive such praise is especially validating.
read moreThank you very much, barleygirl. Having this piece receive such praise is especially validating.
This is the piece that started me writing after at least a 15 year gap. It came out of my head one night. I eventually went looking for a place to share it and landed here. I also think it might give people a lens into the rest of my writing.
The last sentence, is unfortunately, still true (but of course there are online forums, I just haven't found the one that fits yet).
I truly believe in difference as opposed to disability and finding ways to make that difference work for us, in out world. On of the tags on this piece is neurodiversity.
Thanks again.

[Bacchus]

Labels no doubt-
make us sigh in relief- feeling understood
make us cry- there is something "off" with us
make us relate- to others like us

but it isn't our new box- that we live in... we are still people first,
just a bit more understanding to what's really going on- with the good and hard parts that brings.

You are still you.

Thanks for sharing- I have different parts of me that have labels too
I can relate to the relief and grief of it...
but there is still, just me :)

[Shannon]

Thank you for the read and the kind words.
I like the phrase relief and grief. I choose to see it as a description of how my brain works and nothing more. And I do believe, we are all way more alike than different. Your understanding illustrates that beautifully..

[Woody]

fascinating. you tell it in a matter-of-fact, simple way and it's touching. I admire people who can talk about personal issues not because they like to whine but in order to inform and help others.
I've never heard of aphantasia before. thank you for sharing S. Mi and bravo.

[Shannon]

Thank you for reading. And wonderful feedback.

[alanwgraham]

Thanks for sharing your fascinating story. It is truism to say we are all different but some of us are more different than others! You have told your story very clearly even if it hard to appreciate how tough things have been for you. I also have always felt that I wasn't quite on the same wavelength as others. The whole thing became clear when I had a major manic attack and was diagnosed with bipolar. I have been able to take the positive from it. I can look back and put my life in context and also it has released this fantastic creative urge.
Thanks, Alan
Would you like to look at my poem 'manicarus' which descibes how it feels for me

[Shannon]

Thank you for reading and the kind words. I would love to give your poem a try!