“Eyeless Mind is an astonishing true story about an extraordinary family. Stephanie Duesing is a brilliant, warm, sensitive, and loving advocate for herself and for her son, Sebastian. A series of unremarkable events unlocks the mystery of Sebastian’s amazing verbal visual processing. Sebastian’s “blindness,” despite having normal acuity and full visual fields, was profound. Stephanie was torn between amazement at how much Sebastian had accomplished despite his severe visual impairment, and also devastated by the belated discovery of this profound disability. Her son’s severe visual impairment was almost completely masked by his fascinating ability to compensate. Stephanie’s fear for her son’s safety and ability to live independently, as well as her guilt at not knowing that her son was almost completely blind, combine to lead her on a journey to get him the help that he needs.
"This very well-written book brings the reader on the journey of a major medical discovery. The reader discovers how Sebastian sees, and along the way points out the “blindness” of too many medical professionals. With dedication, intelligence, and common sense, this family brought something that was never thought possible to the attention of the medical, scientific, and educational communities: neuroplastic verbal visual processing, kinesthetic awareness, and blindsight. I feel privileged to have worked with Stephanie and Sebastian Duesing.
"It is my hope that this true story will inspire others to persevere when the medical communities do not listen and learn from their patients and their families. Cerebral/cortical visual impairment was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code. The anguish experienced by this family is shared by people around the globe who are struggling to get medical, educational, and habilitative care for this common but poorly understood condition. This book is a wake-up call.”- Dr. Barry Kran, professor at the New England College of Optometry and optometric director at the New England Eye Low Vision Clinic at The Perkins School for the Blind.
“A wonderful true story that navigates an entire range of feelings...from frustration to redemption. The discovery of Sebastian’s verbal visual processing is a fascinating case that is transforming our understanding of CVI. A must-read for any family facing the challenges of raising a child with any disability.” - Dr. Lotfi Merabet, director of the Harvard CVI Neuroplasticity research study, associate scientist at Massachusetts Eye and Ear, and associate professor of ophthalmology at Harvard Medical School
“In her inaugural book, Duesing takes us on an intimate journey through her family’s struggle in obtaining a diagnosis and the necessary services for their son with cerebral/cortical visual impairments (CVI). Their experience provides compelling evidence for the need to better understand the brain changes associated with CVI and how these impact how one views the world.” - Corinna Bauer, PhD.,investigator at the Massachusetts Eye and Ear, and instructor of ophthalmology at Harvard Medical School
“The touching story of a bright teenager with undiagnosed and untreated cerebral visual impairments and his mother’s struggle to have these invisible disorders recognized. This story is as important to patients and their families as it is to the educational and medical institutions. Cerebral visual impairments need to be better known, better diagnosed, better managed, and this book will certainly contribute to that.” - Dr. Sylvie Chokron, director of research, Unit of Vision and Cognition at La Fondation Rothschild, Paris, France
“An amazing story that left me both inspired and intrigued. Stephanie Duesing relates the far-reaching implications of the complex and widely misunderstood diagnosis of cerebral visual impairment. After reading of this family’s honest and engaging perspective on their path to understanding, professionals will be compelled towards conscientious reflection and consideration of the experiences offered by parents and children.” - Mindy S. Ely, PhD., assistant professor of low vision/ blindness programs and EL VISTA project co-coordinator, Illinois State University
“Stephanie Duesing’s compelling new book, Eyeless Mind, is as warm and humorous as it is insightful and sometimes distressing. The author deftly weaves her remembrances of her difficult childhood through the narrative of her quest to find the correct diagnosis for her gifted son, Sebastian. A must read, and an epic love letter to the significance of music and art education for children.” - Alexandra Patsavas, Music Producer/Soundtrack Producer. (Credits include The O.C., Mad Men, Grey’s Anatomy, “The Twilight Series,” Supernatural, and Riverdale).
“A harrowing, heartbreaking, inspiring tale of mother and son as they find their way through personal and professional forms of tunnel vision. A testament to the power of love and adaptation, and to the importance of seeing - and feeling seen.” - Meg Jay, PhD., author of Supernormal and The Defining Decade
“Do you ever feel like someone is looking at you--even speaking to you, but they don’t really see you? Once in a great while, a family story becomes more--much more. This is just such a story--one that teaches the importance of trusting your gut and defending the truth.
It is acceptable for doctors not to know everything, but it is not acceptable to doctors to believe that they do. It is not acceptable for a doctor to refuse to see and hear you as you explain what you know to be true. Stephanie’s story is one of undying love for her son--the story of a seemingly endless journey to find the truth in a world where the truth only lies in a medical journal. It is proof positive that you must stop and wait to be seen--to be heard--before you can tell your story.
Eyeless Mind is a story worth reading--a moving account of motherly love founded on the belief that God’s truth always wins in the end. Let this story give you strength when medical issues plague you and you know in your heart what medical professionals refuse to accept.
‘Even when you have never seen the air we breathe or the wind that moves the largest oak tree, do you need proof that it exists?’” - Terry Stafford, award winning author of Strings of Faith and the Brandon McStocker Series
“Eyeless Mind is a fascinating portrait of an extraordinary American family. Moving, personal, at times humorous, Duesing draws the reader in to experience a major medical discovery right along with her--and then we all witness the power of the arts to heal.” - John Hildreth, teacher, actor and director
“The importance of telling the story of Sebastian Duesing and his parent’s journey in seeking a diagnosis and understanding of a specific visual processing condition cannot be minimized. It is a story of parental perseverance in spite of incredulity of both medical and educational professionals. This letter of endorsement is from the perspective of an educator in the field of visual impairments, the very discipline that has a major responsibility in determining vision-related services provided by the school. It is also a story of educational disbelief, neglect, and refusal to provide services by all involved school personnel. One of the major purposes of education is to promote critical thinking and problem-solving skills in learners. It appears that neither were employed when it came to selecting assessment instruments to examine Sebastian’s functional use of vision and in interpreting the results. Most of the assessment tools were totally inappropriate and, more seriously, administered by professionals ill equipped to go beyond the formulas dictated by the chosen instruments.
"It should be noted that Sebastian is not the only student who has suffered from the fate he endured. He is, however, the most unusual and, to date, the only one identified with verbal-visual processing dysfunction. Hopefully, this book will result in some changes for both preservice and inservice training. Although it is important to introduce both TVI and O&M learners to varying assessment tools and methods of instruction, perhaps the most important skill to impart is being open to the “flat world” may not be flat, the impossible may be possible, and the incredible may be credible. This is what I learned from Sebastian Duesing." - Mary T. Morse, PhD., special education consultant for students with multiple disabilities and/or deafblindness
"Eyeless Mind" changed my life forever. For the first time ever I am speaking openly about my CVI and this book is why. The author put my life and so many others' into words through her gift of writing. Her vivid descriptions resonated with me in the depths of my soul. I read it straight through and cried the whole time. Fellow CVIers, this book is the equivalent of ten years of therapy. You will finally not feel crazy.
Her book so accurately captures navigating the medical system with CVI, in particular eye doctors who were trained to look only at the eyeball. She described the realities of so many people with cortical/cerebral/neurological visual impairments so perfectly - the genius yet draining work arounds her son and so many of us had to develop to mask our blindness because of ocular exam results wouldn't qualify us for services. She describes the nightmare of not one single soul understanding for years, doctors repeatedly slamming their doors on us, even vision therapists who pick up on the finger pointing to the moon - strabismus, oculomotor disorders, etc..-but not the moon itself - CVI/NVI.
Her tireless pursuit of the truth, advocating for her son until she reached the truth, and recording it in this book, will change the lives of so many.
Thank you, Sebastian, for enduring additional medical tests for a larger cause. Thank you to the author for writing this book about it. As a blind rehab professional myself and after reading this, I am inspired to continue this work and to replace profound suffering with compassion and understanding for our next generation. May CVI/NVI become common knowledge among both eye care professionals and blind rehab professionals. If you are either, you have to read this, too. Hand on my heart. With my deepest gratitude. - Nai Domato, former Director of Deafblind services at the Columbus Lighthouse for the Blind
I received my pre-order copy on Friday April 24. I was so engrossed in the book that I was finished with it by the morning of Saturday April 25th. Stephanie and Sebastian's story is truly remarkable. Remarkably uplifting in the sense that Sebastian is truly a miracle embodied (a genius who could mask his blindness) and that his mother Stephanie would go to the ends of the earth to fight for him and get the answers they needed to diagnose his condition: CVI (Cortical visual impairment (CVI) is a form of visual impairment that is caused by a brain problem rather than an eye problem And it is one of the leading visual impairments, but it is not even in the DSM-5). Remarkable in the sense that despite such terrible childhood abuse at the hands of her own mother, that Stephanie continues to be a loving and giving individual. But also remarkably angering and heart wrenching to bear witness as you read about the medical malpractice (that we often hear stories of, but can never truly expose due to the very broken system that we have) that this family encountered literally from day one, and the education malpractice that is hinted at towards the end of the book. From doctors misdiagnosing, to medical professionals throwing ethics out the door to lie about what they bore witness to, to individuals labeling a mother crazy because she wouldn't take half-assed diagnostics, false promises and was willing to speak out against doctors just trying to push her worries off as an irate helicopter mother (which she's not) - despite the odds. This is a book of one woman's truths and the experiences she and her son lived through just to get diagnosed in order to get the sytems in place to help him. It's mind blowing how this family had to endure so much, but instead of being bitter -they are being better - they are doing better and attempting to make the world better for others who are experiencing CVI by shedding light on the dark realities they and what I am sure THOUSANDS OF OTHER FAMILIES likely face annually. As a mother who has a twice exceptional child (someone who has high intelligence, but who struggles with sensory processing disorder and is able to mask the fact that she is not neurotypical), I could see my story (and many other moms with kiddos like mine) in Stephanie's story. Schools will fight you, when you are asking for the smallest accommodation - doctors will tell you "Oh, they'll grow out of it" and then years later when they are not growing out of it, you wonder who is crazy? You or them? Then, you get angry. Then you get smart. You realize that you have to fight and advocate for your child because no one else will. The schools don't always have the chid's best interests at heart (there are budgets they have to keep after all). Sometimes, the Drs. don't always have their best interests at heart or the ability to give the help that kids with "invisible" disabilities may have (they're often over book, and overworked and don't always have more than the 20 minutes to offer you at those annual check ups). Stephanie's story rips open the already festering wounds we are seeing in the medical and educational fields that so many don't want to talk about and would rather try and hide from. She's forging forward to push for change. Her story continues to inspire. During a time I've often wanted to give up the fight, she gave me another kickstart to keep pushing forward through her uplifting words. This story is not a sob story, her humor is what truly brings this to life - her ability to pull you in with her descriptions tells me she still likely has some of that photographic memory she thinks she lost after her brush with death in childbirth. Stephanie and Sebastian's story is the real life embodiment of a miracle. This book deserves to be on the best selling list. If you are a parent experiencing hardship due to medical/school professionals denying your worries about your special needs child (or a twice exceptional child like mine) then read this book. Find strength in this book. Don't give up on your fight. The darkest journeys often lead to the brightest moments, in my opinion. Our beautiful spirits are strengthened and developed in both good times and in bad. This book is a testament to that. - Dwight B