Fireside Chat with Stephanie Duesing, Author of Eyeless Mind: A Memoir about Seeing and Being Seen

I recently crossed paths with Stephanie Duesing, author of the newly released book, Eyeless Mind: A Memoir about Seeing and Being Seen. Once I began reading her book, I could not put it down. A true page-turner, especially because it’s written about a topic so near and dear to my heart. It made me laugh and cry. At times, I felt exasperated about the challenges we have to deal with as parents who have children with CVI. I can understand some of her frustrations and reading her words felt as if she were sitting in my living room sharing her story.

This Fireside Chat is my most recent initiative at CVI Journey. Its purpose is to create opportunities to engage professionals and parents with deep CVI knowledge on a one-on-one basis, so our community can benefit from their insights and experience. Please, help us share this blog with other parents, and if you want to participate in a fireside chat, please contact me. We are looking for volunteers to step forward.

About the Author: Stephanie Duesing is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment. A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers. She’s a graduate of University of Illinois at Urbana-Champaign and lives in the western suburbs of Chicago.

As the mom of a child with CVI, I was excited to speak with Stephanie to learn more about her CVI journey and her son Sebastian.

– Cindy

What is your book Eyeless Mind about? What inspired you to write it?

Imagine that you could see with your eyes closed. It would be like being a bat, flying through the night, and seeing with echolocation. Now imagine having your eyes wide open and sometimes being able to see, and sometimes not being able to see even though your eyes are still open. In 2017 we discovered that my son Sebastian could do exactly that.

Eyeless Mind is the true story of our discovery of my teenage artist son Sebastian’s almost total blindness. Sebastian is the only person in the world known to process his vision verbally. He sees with words like a bat sees with sound. My characteristics are tall/blonde/glasses. When Sebastian thinks those words to himself, he gets a quick idea of what I look like.

Sebastian spent several hours getting his brain scanned in the fMRI for Dr. Lotfi Merabet at the Harvard CVI Neuroplasticity research study. What an incredible team of people! What Dr. Merabet found was amazing, and confirmed what we had discovered at home months before. Sebastian is the only person in the world known to be able to choose to see or not see with his eyes wide open. When Sebastian isn’t thinking words to himself, he has no conscious perception of sight.

Eyeless Mind is the true story of how we discovered Sebastian’s almost total blindness, his unique verbal visual processing, and what it took to bring a major medical discovery to the attention of the very dysfunctional and resistant medical and educational low vision fields. It was not easy. It was horrible.

Our family suffered lasting trauma emotionally, financially, and psychologically because of the abuse we experienced. Medical and educational professionals who had no training in the most common form of visual impairment in the developed world were eager to verbally and emotionally abuse us. One doctor that we’d never even met before walked into our exam room screaming and threatening me in front of my fifteen year old son.

The only help that Sebastian needed was a few weeks of orientation and mobility services. The doctors treated us like mentally ill criminals.

At first I made excuses for the way that we were treated. I read, and we were repeatedly told, that CVI was very, very rare. I also knew that the ability to see with words was a completely new discovery. I told myself that of course no one would believe us that my son could see with words. It was understandable that doctors would not understand something that no one had ever heard of. I told myself that the $150.000.00 in medical bills we incurred was just the cost of bringing a new scientific discovery about a very rare condition to light.

But I was wrong. CVI is not rare, it’s common. Once I discovered that CVI is the number one form of visual impairment in the U.S. and across the developed world, I was outraged. I had been using the correct medical terminology to describe my son’s symptoms since the very first appointment, and nobody had helped us. I could not believe that there were others, tens of thousands of others, just like us.

I found Facebook groups for CVI, with thousands of others, and I was stunned.

I saw parents desperate to understand their child’s vision impairment and having no professional to turn to for answers.

We weren’t the only ones being emotionally and verbally abused by doctors. There were countless infants and toddlers who were obviously severely visually impaired, and parents unable to find a doctor who would diagnose them. Every day I saw mothers and fathers, begging for help finding educational and habilitative support. I saw parents desperate to understand their child’s vision impairment and having no professional to turn to for answers. I knew that our story was important because it’s not about just us. It’s about all of us.

There were three reasons that I really felt compelled to share our story with the world. First, I knew that the ability to read, as Sebastian does, didn’t mean that he was typically sighted. This fact eluded the medical and educational professionals that we dealt with completely. If Sebastian was blind yet could read, that meant that many other people were out there in the same boat. I couldn’t leave them to drown.

Secondly, I knew that if Sebastian could learn to see verbally, then it was absolutely possible that other children could see with words too. I know that blind children can learn to echolocate. Teaching children to identify objects and people by their verbal characteristics could actually change their ability to see.

Finally, being an early childhood music and movement teacher with many years learning about the neurological benefits of music in early childhood, I had important research-based information for every parent of a child who has CVI. Although many children who have CVI are severely developmentally delayed, Sebastian had all normal developmental milestones despite having very severe CVI. I knew that music was the reason why, and I had to share.

It took fifteen years for your son to be properly diagnosed with CVI. Once you finally understood the medical reason for some of his non-typical behaviors, did anything change in terms of his lifestyle, educational programs, daily routines or the management of his health?

Sebastian’s verbal vision and his very well-developed motion perception/blindsight make his severe CVI an almost completely invisible disability. There really weren’t any obvious non-typical behaviors. We have many photos of him making eye contact from his earliest days, and Sebastian is face blind!

Sebastian had all normal developmental milestones, freely and easily learned to ride his bicycle without training wheels when he was four, and was socially adept and extremely able academically. No doctor, teacher, friend, family member, or stranger ever suggested to us that there was anything at all concerning about Sebastian’s health, behavior or appearance. We had no idea that he had any disability of any kind.

As a toddler, Sebastian expressed anxiety about going to places like the grocery story.

The clues that we did miss were subtle, but also classic CVI symptoms. As a toddler, Sebastian expressed anxiety about going to places like the grocery story. Grocery stores are very visually complex, and they are very challenging and uncomfortable places for many people who have CVI. Sebastian didn’t have tantrums, though. He called it his “I’m Nervous Game.” His doctor told me that he was seeking negative attention and to discourage the behavior by distracting him with other things, which I did. Sebastian stopped telling me that he was nervous on our outings.

In preschool, Sebastian had what appeared to be mild but persistent separation anxiety. He cried at drop off every day for two years of preschool, and then frequently in kindergarten as well. His separation anxiety was very concerning to me because in all other situations, Sebastian was outgoing and social, friendly and talkative, and made friends easily. His anxiety at going to schools where he had many friends that he knew and liked to be with made no sense. His teachers and doctors said, “He’ll grow out of it” and “Don’t worry. He’s fine. We worry about the ones who can’t settle down.”

Sebastian always settled down quickly. He internalized his fear and learned at the age of five that telling adults that he was scared didn’t help him. He stopped telling us. He did not stop being afraid, he just went silent.

Once we discovered that Sebastian had CVI and that he had topographical agnosia, everything changed for the better. Everything about Sebastian’s mild seeming (but not really!) anxiety made sense. Sebastian has always excelled academically, so the only help that he needed was with navigation.

We sought immediate occupational therapy for navigation for him while we struggled with the doctors. It took us about fifteen months to get an accurate diagnosis for Sebastian with recommendations for orientation and mobility training with a white cane. Leader Dogs for the Blind flew Sebastian out for their weeklong orientation and mobility training intensive, and Sebastian truly benefitted. He has the safety skills he needs now for when his vision is at its worst. These programs changed Sebastian’s life.

Sebastian is now completely independent. He attends the School of the Art Institute in Chicago, and he lives downtown. He travels across the country and is able to live life fully and without fear.

How did you feel when you finally discovered that Sebastian had CVI? What were your thoughts at the time?

My emotions were chaotic. Over the next days and months we made more and more discoveries about how severe Sebastian’s CVI really was, and how he was seeing with words. First we discovered that Sebastian was face blind while we were going through old photos. Sebastian couldn’t recognize himself or anyone else.  I was incredulous. How could he not recognize his own face? I had never heard of CVI or prosopagnosia. I didn’t know that it was even possible to be face blind.

The feeling of shock and unreality quickly went to feeling completely baffled. Sebastian is an artist. He draws and paints faces with extraordinary detail. I was incredulous, but I also absolutely believed him. His reaction was so genuine. I felt confused and somewhat concerned. I immediately started trying to find out more information.

The next day we discovered that Sebastian had been navigating our own home by counting his steps and turns his entire life. Once I realized that he had no ability to recognize his surroundings, I was immediately overwhelmed with guilt and fear for his safety. I scoured my memories for any and every clue that we had missed, and of course the separation anxiety and the “I’m Nervous Game” suddenly made sense.

I was grief-stricken. I remember holding my teenage son as we both cried on the kitchen floor. I had to tell him that he was blind. I’ll never forget that moment of shock in his eyes as he understood for the first time why he had silently struggled for so many years, knowing that he was different in some intangible way from his friends but not knowing why.

I understood at that moment that Sebastian’s life was in danger and that he needed orientation and mobility training and to learn to navigate.

I understood at that moment that Sebastian’s life was in danger and that he needed orientation and mobility training and to learn to navigate. I also felt a presentiment of dread. I had an inkling that we would have a hard time finding someone to believe us, although I never have dreamed that our journey would be as difficult as it turned out to be.

What role if any did your son Sebastian play in developing the book? How did he feel about about having a book published about his experience?

Making our story public was a very difficult decision that we spent many hours discussing. We talked about issues surrounding privacy and safety, as well as concerns regarding retaliation from medical professionals unrelated to Sebastian’s vision care. Even with a twenty-five page report from Dr. Barry Kran and irrefutable fMRI evidence of Sebastian’s verbal vision from Dr. Lotfi Merabet at the Harvard CVI Neuroplasticity research study, we still sometimes experience severe malpractice from other specialists.

It is scary to be a whistleblower and to publicly point out the decades of failure by an entire medical and educational practice. Doctors stick together. We would never choose this path if we had another choice.

Sebastian is fully supportive of every effort that I am making to end the discrimination against people who have CVI. He painted the self-portrait on the cover of the book, which is one of my favorite pieces of his art. He also created another sketch that appears in the back of the book on his “About the Artist” page, which I adore. That particular image has a great deal of personal meaning.

After my paper on his neuroplastic verbal visual processing was published in the November Journal for the Association for the Education and Rehabilitation for the Blind and Visually Impaired, Sebastian gave me the best birthday gift I’ve ever received. First, there was a beautiful painting of birds balancing on a powerline. It reminded me of us, precarious yet balanced, ready for action, yet waiting. When I opened the card that came with it, Sebastian had written in his beautiful script, “I’m proud of you.” He tells me that frequently, and I’m incredibly proud of him.

Music and the arts have played an important role in your family’s life. In fact, you have been a children’s music teacher for many years. How has music helped your son who has CVI? Should parents who have children who have CVI make music a routine part of their lives? What kind of music do you recommend?

More than twenty years ago neuroscientists discovered that the brains of musicians actually function better and differently than the brains of people who don’t participate in music. That discovery led to more than two decades of research on how and what music actually does neurologically. Music is the only activity that activates the motor, visual and hearing parts of the brain at the same time. It forces both sides of the brain to communicate with each other through a special connecting part called the corpus callosum, which makes more neurological connections between the left and right halves of the brain.

There are more than two decades of research that show that music in early childhood has tremendous neurological benefits. Children who have music early on are better at sports because they have better balance, coordination, and both fine and gross motor skills. Our ears have two functions: hearing/listening and also the vestibular functions of balance and coordination. Music helps to improve language ability too, including reading, and also higher order thinking skills. Musicians are great problem solvers!

Although Sebastian was born almost completely blind, he had all normal developmental milestones. My blind son was using visual guidance of reach at a developmentally appropriate age. How is this possible?

I sprinkled music into our everyday lives here and there, every single day, throughout the day.

Sebastian received intensive music therapy from birth just because he had me for a mom. When I say intensive, what I mean is that I sprinkled music into our everyday lives here and there, every single day, throughout the day. We didn’t sit down and do a one hour music marathon every day. I just danced with him when I was happy. I bounced him to nursery rhymes, and I rocked him to sleep with soft lullabies. We did body awareness rhymes on the changing table. We played joyfully together with silly songs like “There Was An Old Lady Who Swallowed a Fly.”

According to Dr. Gordon Dutton, motion vision is usually unconscious, but “it can be rendered conscious.” It can change and adapt. There is a wonderful story about a woman who lost all sense of sight except her motion perception. You can find “The Blind Woman Who Saw Rain” on NPR. This lady was able to train her motion perception and develop it so that it became a useful form of vision for her.

It is my belief that Sebastian’s motion perception was developed and improved by the constant simulation of music and movement. Sebastian has blindsight. He uses his motion perception to travel through space without bumping into things that he can’t consciously perceive. Not every child who has CVI will necessarily develop blindsight because they have music, but there are decades of research demonstrating that all children benefit from it, especially when music and movement are put together.

Sebastian is almost completely blind. He should have been developmentally delayed. More than two decades of research support my theory that Sebastian’s good balance, coordination, fine and gross motor skills, auditory perception, language development, reading and math ability and IQ were all helped by his early and daily exposure to joyful music making.

All parents, not just parents of children who have CVI, but all parents need to be singing, dancing, and playing musically with their children from birth.

All parents, not just parents of children who have CVI, but all parents need to be singing, dancing, and playing musically with their children from birth. Our culture has changed radically in the last hundred years or so. From birth on, babies are strapped in car seats and bouncy chairs, high chairs and walkers. We are awash in children who have sensory issues because from infancy on, in our modern culture, children are simply not getting enough movement to develop healthy brain structures. Music and movement are part of every culture in the world because they are necessary for normal, healthy brain development.

I recommend that families with young children find an excellent early childhood music and movement class. There are many wonderful programs, and there are many wonderful teachers. My best advice is to find one that weaves lots of joyful movement into the music making: rocking, swaying, bouncing games, marching around the room, dancing and twirling in both directions. These activities are all wonderful physically, emotionally, socially, intellectually, and neurologically for everyone in the family. Best of all, it’s fun.

CVI is the number one cause of visual impairment in developed countries around the world. As you know, far too many children go undiagnosed, or are misdiagnosed. What are three things that families can do to raise awareness about CVI?

Education is the key to everything. Before anyone can educate others about CVI, they must first make sure that they themselves understand CVI. It’s difficult for parents of small children to make the time to read and do research, which is why I’m amazed at all the amazing CVI parents out there working so hard. Their dedication and commitment to the cause is so inspiring.

There is a great deal of emotion and passion in our CVI family. Many of us have had some very traumatic experiences. Those feelings of hurt and injustice can be helpful. They inspire us to make change, to advocate, to teach and to learn.

Our family is still hurting from what we went through. I don’t think that we will ever be the same. I struggle every day with anger and frustration. Channeling that energy into more productive outlets is important, because then we can use our best selves to work for change.

We are incredibly grateful to the international team of CVI experts who came to our rescue.

There are some dedicated professionals devoting their lives and careers to creating factual, medically and scientifically valid information about what CVI is and how to diagnose it. We are incredibly grateful to the international team of CVI experts who came to our rescue. It’s our job as parents to learn as much as we can from these CVI heroes and then take that information out to the community.

I recently gave a short Facebook Live chat. I had lots of friends listening in. I asked them to give me a thumbs up if they’d never heard of CVI before they met me. My screen lit up with blue as one person after another hit the like button. Teachers, authors, vision professionals, parents of children who have special needs, special ed teachers, lawyers, you name it. No one had ever heard of it. We need to be loud.

Finally, if you would like to help our family to raise awareness about CVI, you can buy our book, Eyeless Mind: A Memoir About Seeing and Being Seen. We will be creating the Sebastian Duesing CVI Foundation with at least ten percent of the proceeds and using it to fund much needed research and education in CVI.

Do you have a question or comment for Stephanie? Comment below. Visit Amazon to get your copy of Eyeless Mind.