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Losing my mind’s eye

My mind’s eye was erased

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; lost part of my peripheral vision and for purposes of this story, lost my ability to visualize anything. This is what it’s like losing your mind’s eye.

Apparently, during what should have been a somewhat routine out-patient procedure to perform a uterine artery embolization for some troublesome fibroid tumors, 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 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 been just wiped out. I was mesmerized by this slideshow playing constantly in my head until the reel finished and the screen went black. Even in the midst of 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 moment.

Having made the initial diagnosis and determining there was nothing further that could be done for me, I was discharged from the hospital with a left 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 months that followed, I found a vision rehab program at Tennessee’s Siskin Hospital that afforded me the opportunity to drive again. Prior to that, I busied myself relearning the alphabet, cooking family favorites from written recipes, and cajoling my kids’ babysitters into driving me around. I also discovered something pretty disappointing in my character. Unlike the image I had held of being a person who would find courage and grace in adversity; with the loss of some independence, I was a bitter, disgruntled woman. Not my proudest moments. 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.

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 answering 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 with no 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 was able to 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 am very, very tired, or nearing sleep. It is then that a kaleidoscope of 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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