It was not until Sebastian was 15 that the Duesing family discovered he had Cortical/Cerebral Visual Impairment, or CVI. CVI is a bilateral impairment stemming from damage to the brain versus damage to the eyes. In other words, the brain can not interpret what the eyes see. Since CVI is atypical in its manifestation of symptoms— Sebastian Duesing tracked as an infant and showed no signs of bumping into walls or questionable coordination and accuracy in sports like diving or water polo or art— it made it difficult for Stephanie Duesing and her husband to recognize any red flags. Sebastian was a straight-A student whose intellect advanced him one grade up in grade school, and none of his teachers noticed any atypical sight issues. There were no signs of visual impairment.
In her book, “Eyeless Mind, A Memoir about Seeing and Being Seen”, Stephanie explains how her son’s disability left her with a lifetime of guilt over “abandoning” him beginning in Kindergarten. Stephanie did not understand that leaving her son at such a tender age stranded him in a world where his compromised vision caused great anxiety and fear as he tried to navigate the fuzz of images in his brain. Because there were no typical signs of blindness and Sebastian learned very quickly to self-adapt, he appeared like every other kindergartner his age, just with a heightened sense of separation anxiety.
For many kids who suffer from CVI, there is little recollection on the brain’s part to remember their surroundings. They may visit the same grocery story one thousand times, but each trip requires pre-set memorizations to navigate the unfamiliar surroundings. In Sebastian’s case, he relied heavily on words and counting to know how to get home from school and identify faces. His mother explains in the book how her son “sees” her face as “tall, blonde, glasses” and how he memorizes turns and steps at every new school. Sebastian’s brain created a different way of imaging. Unable to reproduce familiar recognition from his sight, he became the first person known to fill the gaps of information in his brain with personalized words and calculated steps. In essence, he processes vision verbally.
Stephanie tracks her deep frustration through the book in trying to get their voices heard by the medical industry. Although CVI is the most common cause of visual impairment in children aged 1-3 (www.childrenshospital.org), it does not have a medical diagnostic code, and in the Duesing’s case it took doctor’s visits “in the triple digits” to finally find the needle in the haystack: a medical scan revealed Sebastian had a massive stroke in utero (www.dailyherald.com). One of the reasons Stephanie decided to write “Eyeless Mind, A Memoir about Seeing and Being Seen” is to bring awareness to CVI and its often misdiagnosis in the medical community.
Today, Sebastian attends the School of the Art Institute in Chicago where he is studying studio art and art history. Although his paintings evoke a richness in the use of image and color, Sebastian says he is in the exploring stages of his medium. And while the 18-year-old has accomplished things most 50-year-olds have not, it seems there is space ahead of him for his artwork and personal story to be seen and heard. Three aviary images from his small section of artwork for sale on his website drew my attention. The graphite detailing of the neck and head feathers in Maggie is reminiscent of MC Escher’s use of patterns to make single images stand out. Mimi 3 shows a bold combination of Georgia O’Keefean colors weaving circles around the parrot’s eye, and the artist’s ability to open up his hand with looser jabs of color and form in Ariel hint at future flexibility of mediums. They say beauty is in the eye of the beholder— subjective to sight. Sebastian’s art certainly provokes a deeper meaning of both sight and beauty in this truth.
For more information on CVI (Cortical/Cerebral Visual Impairment), visit: www.childrenshospital.org/conditions-and-treatments/conditions/c/cortical-visual-impairment/symptoms-and-causes.
Photos courtesy of Sebastian Duesing
