A Memoir about Seeing and Being Seen
In January of 2017, I discovered that my straight A honor student, artist and water polo-playing son Sebastian was almost completely blind. He was fifteen years old. Sebastian is the only person in the world known to process his vision verbally. Like Daniel Kish, who lost both eyes to cancer and taught himself to echolocate, my son has unique visual processing. Sebastian is entirely self-taught in sublingual vocalization, which means that he narrates silently to himself in order to process what he sees. He quite literally sees with words. My characteristics are tall/blonde/glasses. When Sebastian thinks those words to himself, he gets a momentary glimpse of what I look like. Sebastian spent six hours in the fMRI for the Harvard CVI Neuroplasticity research study, where Dr. Lotfi Merabet captured Sebastian’s verbal visual processing in the fMRI. 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 he is not narrating to himself, he has no conscious perception of sight.
We experienced horrific malpractice trying to get a diagnosis for a blind child who appears to be typically sighted. In the process, we discovered that while Sebastian’s neuroplastic verbal visual processing was unique, his actual condition is common and poorly understood. 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. There are tens of thousands of people in the U.S. alone who have CVI, and there are only a tiny handful of medical professionals and educators who have any modern, scientific understanding of what CVI is or how to diagnose, identify, or educate those who have it. We had more than $150,000 in medical bills trying to get a diagnosis for what turned out to be a common visual impairment. It is a true public health crisis.
Eyeless Mind is the true story of our discovery of Sebastian’s verbal visual processing and our subsequent battle to get a diagnosis for him from a medical establishment that has collectively turned a blind eye to the needs of countless people around the world. It’s a story about what we as individuals and as a society choose to see or not see, and the power of the arts to heal. Most importantly, Eyeless Mind is a story about love, forgiveness, and redemption.
Available at: https://www.andersonsbookshop.com/event/stephanie-duesing
