Losing My Mind’s Eye

Standard outpatient procedure turned stroke, peripheral vision deficit and an unnamed loss of visualization. My mind’s eye was erased.
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losing my mind's eye

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What It’s Like Losing My Mind’s Eye

In the winter of 1997, I was a healthy but stretched-too-thin working mother with a job in Washington, DC, a husband, and two young children. I had an epiphany that maybe I should be doing just one job, taking care of my kids, and my husband could take care of us. Long story short…I quit my job with visions of a “soccer mom” floating in my head, and less than six months later had a stroke. I lost part of my peripheral vision and, for the purposes of this story, lost my ability to visualize anything. This is what it’s like losing my mind’s eye.

Apparently, during what should have been a somewhat routine outpatient procedure to perform a uterine artery embolization for some troublesome fibroid tumours, I lost a lot of blood and blood pressure resulting in the right occipital infarction or stroke. In the immediate aftermath, I was puzzled as to why I could not see the left side of the room. Then I was intrigued by the constant reel of images playing in my head. Later I was troubled by my inability to read the cards sent by friends when the letters of the alphabet meant nothing to me. It seems that in addition to the peripheral vision loss I suffered, I no longer had any stored visual memories nor the ability to create new ones.

It would be almost 20 years later until I learned that I had joined a rather exclusive group of people living with acquired aphantasia.

Coping with Acquired Aphantasia

Until it happens, you don’t really think about how all your memories are stored as images, not words or thoughts. At first, I was more alarmed at how all my memories had just been wiped out. I was mesmerized by this slideshow constantly playing in my head until the reel finished and the screen went black. Even amid this, it occurred to me that maybe this was what people who had a near-death experience referred to as seeing their “life flash before their eyes.” Surely in the process of near-death, vision cells were dying and maybe giving off a burst of imagery in those final moments.

Having made the initial diagnosis and determining there was nothing further that could be done for me, I was discharged from the hospital with peripheral vision loss and no ability to visualize anything or recall any images.

I was told I could no longer drive. This limitation consumed me with angst. In the days before Uber, living in the suburbs with two young children and no ability to drive was indeed a hardship. Fortunately, in the following months, I found a vision rehab program at Tennessee’s Siskin Hospital that allowed me to drive again. Before that, I busied myself relearning the alphabet, cooking family favorites from written recipes, and coaxing my kids’ babysitters into driving me around.

I also discovered something pretty disappointing in my character. Unlike the image I had held of being someone who would find courage and grace in adversity, with the loss of some independence, I was a bitter, disgruntled woman. Not my proudest moment. My family and friends were spared this ugly side of a reluctantly dependent me when I began driving again.

Having been cleared to drive, albeit in high SUV-type vehicles only, due to my residual upper left quadrant vision loss, I discovered another problem with driving. Unlike my previous method of moving from one location to another by using visual cues and landmarks, I now required street names, directions, and specific mileage to navigate the world. My passenger son adjusted to my lack of directional skills by asking that I wake him up when I was finished being lost. Nonetheless, I was happy to have this measure of independence and normalcy restored. It was only when I found myself making endless lists of things I could no longer remember in my head or buying things I already owned, or watching the same movie again that I was reminded of my visual deficit.

The Advantages and Challenges of Life Without a Mind’s Eye

But life went on, and I adjusted, all the while unaware that there were others like me. It was not until June 23, 2015, that I read an article in the New York Times about Dr. Adam Zeman from Exeter, who was researching this absence of a mind’s eye and giving it a name: aphantasia. I contacted him and was able to contribute to the research he is doing. It was strangely comforting to answer questions on his survey, which captured my experience.

I must say that aphantasia is not without its advantages. For someone who previously could not watch scary movies, I now watch the grisliest horror films without fear of nightmares. I have a plausible built-in excuse for conveniently “not remembering” things. And after 25 years of not stepping foot in my late parents’ home and the house I grew up in, I could visit without the sadness that would have resulted from visually remembering living there. For me, out of sight is truly out of mind.

Although a lot has changed since losing my mind’s eye, I am reminded of what it was once like when I’m very tired or nearing sleep. It is then that a kaleidoscope of mental images comes forth randomly swirling in my head. Somehow these images are still there somewhere. It is my ability to conjure them or purposefully connect with them that is lost.

Hopefully, the efforts of researchers will one day uncover the missing link. In the meantime, I am inspired by the possibility that for those tormented by visions of past trauma, aphantasia may be the key to turning off unwanted images. I stand ready to be part of any research that leads to answers for this phenomenon. Maybe my story will turn out to be another’s solution.

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Rebecca,

I am fascinated by your story, particularly the rare cases of aphantasia due to surgery.

My wife Selina had two major bowel operations in 2002, ileostomy and ileo-anal pouch   After the second one she was a different person and I gradually realised that she had lost the ability to visualise anything.  I can only assume that she suffered a minor stroke during surgery.  The diagnosis from the medics is vascular dementia but she has been stable for the last 19 years apart from when she spent 6 weeks in hospital in 2018 and came out more dependent on me.

Now I know her condition is called Aphantasia, I wonder if the Vascular Dementia diagnosis is incorrect.  Any thoughts on this ?

Regards

Peter Burton
Dorset, England