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From one night to the next in 2012, at age 57, I realized I’d lost my ability to visualize when the visualization technique I’d always used to drift to sleep (watching my feet descending stairs) was impossible because I only saw a blank, dark screen.

I was not and am not sure why it happened, and no neurologist, MRI, therapist, family doctor, or book I sought answers from had any ideas for the first couple of years. I do remember once having an intense experience I thought was related to migraine at the time, but I can’t say with certainty if it happened the day before or at some other point. I was talking to a friend in a store when my vision alarmingly narrowed to a tunnel and darkened, and there was a whooshing sound in my ears. I tried to act like nothing had happened, and I don’t think my friend noticed anything because she didn’t react, and things soon returned to normal. 

After the blank screen became reality, I entirely stopped remembering my dreams for the first time in my life. I started nearly getting into accidents on the highway because my peripheral vision had narrowed, especially on the left, and I didn’t detect vehicles in the left lane that were coming up on me. I nearly ran into a kid on a bike who was coming from the left while I was approaching a stop sign and looking out for traffic. I became very fidgety, couldn’t sit through a dinner with friends without jumping up many times, couldn’t stop interrupting. ADHD? Though I was never great at learning dance-step “combinations” (in tap, belly dancing, etc., classes) I gave up this lifelong exercise because I couldn’t remember left-right-back-front sequences any longer.

My behavioral optometrist had had experience treating people with stroke, and said I exhibited some behaviors that made her think I’d had one, though an MRI hadn’t shown anything. (The neurologist that ordered the MRI did not even understand the concept of visualization or mind’s eye — I suspect he was a complete aphantasic, and this was in 2013, two years before the work at U of Exeter UK began identifying and naming mind’s-eye blindness, but still. He was incurious.) The B.O. recommended a 10-session therapy, including arranging square/diamond/triangle tiles into various configurations and then trying to recreate them from memory, trying to copy words or symbols oriented “straight up, on right side, upside down, on left side,” and other practices. Initially, I cried when I couldn’t look at two tile shapes and immediately recreate them without peeking, but I got more skilled. 

Cranio-sacral therapy helped open up my peripheral vision again so I am no longer such a hazard to myself and others. I have lost huge chunks of memories (“Don’t you remember?” people ask me. Nope.), can’t reliably find my way to places I’ve driven to a million times, and feel diminished. I am more sensitive to loud music, bright lights, and “ear worms” (snatches of songs that get stuck in my head, feel like an assault, and wake me up at night). I can sometimes remember my dreams now, and realize that I describe stuff to myself in my head in order to remember, say, where I left my book, since I can no longer “see” it in my memory.

I was elated to find out recently that there was a name for what happened to me, and that aphantasia is being studied. I know that sometimes it’s innate, and sometimes acquired. I am hoping that someone figures out why people like me lose our abilities that were once quite vivid, and that a therapy could be developed to get them back.

This discussion group is so interesting to me because it’s helped me realize that some things I chide myself for as faults (getting lost, not remembering important things people tell me about themselves) are maybe related to aphantasia.  I would love to read more from people who lost their mind’s sight.

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Tom Ebeyer Aphantasia
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