Acquired aphantasia…there’s a name for it
This path month I learned that a condition I described to multiple doctors post-concussion five years ago — and it seemed many thought I was exaggerating, imagining it, malingering, being middle-aged-woman-emotional — has a name: aphantasia. Because I wasn’t born that way: acquired aphantasia.
One day in 2005, a 65-year-old man visited a neurologist, saying that after a hospital procedure, he lost his ability to visualize. As told by science journalist Carl Zimmer in a Discover article:
Worried, [the patient] paid a visit to Adam Zeman, a neurologist at the Peninsula Medical School in Exeter, England. Zeman was so intrigued by the case that he teamed up with Sergio Della Sala, a cognitive neuroscientist at the University of Edinburgh who specializes in how the brain handles visual information. Neither Zeman nor Della Sala could offer MX a cure for his condition, unfortunately, but they recognized a rare chance to study how the mind’s eye works.
What struck me — stung me, in fact — when reading this was that the neurologist this man went to believed him. Not just that, he was intrigued enough to look into it. He took his patient as his word, believed that he was telling him something true.
I thought of all the pandering empathy and condescending tones I had endured. All the if I ain’t heard of it it’s not true; the I don’t have an answer but I won’t admit it. The references to my emotions. It was so frequent I developed a prepared response: Yes, I’m emotional. I’m emotional because I’m having this experience; I’m not having this experience because I’m emotional. You might also prefer the head and life you were used to before someone dropped pieces of brick on you.
Even the practitioners who were most understanding and who helped me with a particular aspect of healing never addressed this primary complaint of mine: It’s not the same in my head anymore. Everything is blank, dark, still. I can’t move information around or think about the bigger picture. And it’s like I’ve stopped getting a certain type of input from the outside world too. They worked around it, did what they could, but it’s as if they never heard my real concern. Because of this change, I didn’t feel like myself anymore.
Through the work of Zeman and his colleagues, Zimmer’s popularizing of the science, and an Aphantasia Network website, thousands of people from around the world have come forward saying either that they have never had a mind’s eye or that they acquired this condition after a concussion or other incident. They, like me, are comforted in knowing it’s a thing. There’s a name for it.
In 2015, one year before construction workers in a crane five stories up brushed building debris on my head and sent my life into a tailspin, Dr. Zeman named this inability to visualize, not having a mind’s eye, aphantasia. Phantasia was the word Aristotle used to describe an inner sense or perceptual ability of our imagination that helps us with cognitive activities.
I eventually regained maybe 85% to 90%, enough for my satisfaction, of my prior ability to visualize 22 months after the concussion, four months after doing daily vision exercises prescribed a functional neurologist. He said he wasn’t sure that they would work, but he suspected it, and I was at the point of trying anything. Research has supported the idea that the brain structures used for vision may also be engaged in some way in our mental visualizations. Most of the debris had hit the back of my head, the occipital lobe, where visual processing occurs.
I was making lots of simple addition and Quickbooks entry mistakes and even told the first expensive neurologist I saw, “it’s as if I’m not seeing correctly.” Nothing registered for him. I had skimmed hundreds of articles on concussion research desperately trying to find an explanation, an opening that could provide answers, might lead to solutions. Turns out I was missing one crucial fact that may have helped and that every doctor I saw should have known and taken as a clue: Visual processing happens in the back of the head, just where I was hit. Dr. Scott Thierl, the man who found a way to break through the biggest challenge of this injury, found the visual problem in our first fifteen minutes together…by doing the follow-my-finger bit just a few seconds longer than others.
The aphantasia affected my sense of self. Early on I realized I was thinking of myself in the third person. There was one heartbreaking time when my five-year-old son approached me with a certain look on his face and I was aware that I had no emotional response to what I was looking at and didn’t know what to do. I thought, oh, this little person is important to Sharon and he needs, wants something from me. What would Sharon do? Sharon would cuddle him in her lap and make comforting noises. So that’s what I did. Then I realized, still emotionless, he’s not buying it. Sharon would feel bad about that.
My 360-degree sense of the world around me, the sense of “eyes in the back of my head,” the feeling that I was naturally absorbing information from all around me was gone. So was my ability to meditate. It felt that I couldn’t sink into my normal groove, could not tune in to myself. My meta-cognition, thinking about thinking, and my ability to move information around in my head and consciously store/recall it had also vanished.
I could read the same books as before, but it was a very different experience. It was enjoying one line at a time, very present tense then out-of-mind, no sense of the last paragraph, no reflecting on what I was taking in or integrating what I was reading with existing knowledge. Remarkably, I could later recall the contents of the book in a conversation but there was no advanced awareness of what I would be saying. I would hear myself describe the book and think, oh, that’s interesting.
It felt that I had to process the world through my right ear and I had to physically lean to my right to understand. Eventually I learned that talking to myself in my head helped a little. I practiced this audio-only version of memory with my shopping list on walks to the grocery store, but I never got beyond remembering three things at a time this way.
These were all very specific differences I experienced every day that differed from what it was previously like to be me in my head, that I characterized to friends, family, and medical personnel in exquisite detail without much return validation that I might be describing something real. Yet I knew with 100% certainty that I wasn’t the same in all the ways I mentioned and then some. Imagine not just trying to get help for a maddening condition that wasn’t registering with any medical pros as a thing but also having to get help from some who appeared not be starting with the premise that a 47-year-old human being knew what it was like to be herself, what was normal for living in her own body and with her own mind.
Sometimes I think I began writing again just so that I could tell the full story of my two-year ordeal with pain, a changed head, the medical world, and eventual recovery. Maybe even the equal trauma that was the lawsuit to nowhere. I’m not entirely ready for that yet, but this article was a start, and that’s thanks to discovering that there was a name for my reality at the time. Aphantasia.
Sharon Woodhouse is the owner of Conspire Creative, which offers coaching, consulting, conflict management, project management, book publishing, and editorial services for solo pros, creatives, authors, small businesses, and multipreneurs.
