Book Review: Eyeless Mind
Eyeless Mind: A Memoir about Seeing and Being Seen. Stephanie L. Duesing. Atmosphere Press, April 19, 2020, Trade Paperback, 305 pages.
Reviewed by Julie S. Halpern.
Stephanie Duesing and her son Sebastian are survivors of abuse, negligence, and medical malpractice. This beautifully written memoir is a testament to Ms. Duesing’s courage in the face of manipulation, ignorance, and “gaslighting” by the traditional medical establishment.
Stephanie's family history informs this memoir in a complex intertwining of intellectual and artistic achievement, marred by cruelty on the part of her frustrated and angry mother. Fueled by a failed theatrical career (which amounted to a few community theatre and modeling jobs), her mother descends into rage and abusive behavior after suffering injuries in a car accident. Her main target for physical and emotional violence is her younger daughter Stephanie.
No mention is made as to any real diagnosis or treatment of her mother's illness. Another missing piece is Stephanie's mostly absent father, barely discussed in the memoir. He provides an upper-middle-class lifestyle for his family, but frequent relocation leaves his wife isolated and lonely. It is unclear whether he is at home when his wife abuses Stephanie, or that he is aware of the extremity of her behavior.
Stephanie is a gifted singer who finds meaning in music and eventually escapes her challenging home life by attending music school at the University of Illinois. Her talent and intellectual curiosity lead her to a rewarding career, teaching innovative musical techniques to pre-school children. Stephanie meets and marries Eric, a brilliant, kind computer scientist who adores and supports his young wife. Stephanie has shared details of her childhood with him, but he is largely unaware of the extreme nature of her abuse until they attend a family gathering at Stephanie's mother's home. When Stephanie declines to eat a jello dessert that her mother is aware she dislikes, her mother viciously stabs her in the mouth with a forkful of the dessert.
After struggling with infertility, the young couple gives birth to Sebastian. His birth is difficult, with Sebastian and Stephanie suffering strokes during the delivery. These strokes go unnoticed at the time; their possible damaging effects on Sebastian only realized many years later. Sebastian grows into an intellectual, artistic adolescent, blessed with a great personality and a large group of friends. He fears new places but quickly adapts to his surroundings. Since he excels in so many areas, his parents have no idea that he is almost blind. His eye exams over the years never indicate a problem.
Only when Sebastian suffers a concussion and is given a battery of tests, do results reveal an alarming lack of visual-spatial memory. Stephanie remembers remarking that Sebastian’s earliest art in coloring books showed a lack of focus when coloring in faces, but that later he could draw faces with photographic clarity. After extensive research, Stephanie believes she identified Sebastian’s issue as prosopagnosia, or face blindness. He had been processing vision in a unique verbal context, not understood by the medical community.
For the next several years, the Duesings embark on a series of frustrating referrals to high-priced professionals around the country. Several doctors initially show interest but quickly abandon Sebastian’s case when they cannot readily diagnose or treat him using established medical protocols.
When the Duesings wished to retrieve medical records from one practice, the doctors even denied having ever seen him or his parents. Several doctors raged and threatened Stephanie. No stranger to abuse, she was ready to take them on.
As Sebastian reveals that he relies on counting steps to get from place to place, and had developed an extensive vocabulary to compensate for his visual deficiencies, Stephanie’s urgency to seek diagnosis and treatment grows even stronger. Even Eric seems to doubt that Sebastian is sufficiently impaired to take Driver’s Ed. Fortunately, Stephanie prevails, probably saving Sebastian’s life.
Eventually, Sebastian is diagnosed with Cerebral/Cortical Visual Impairment (CVI) after working with several professionals throughout the U.S. and in Europe. CVI was identified over ten years ago as the number one cause of visual impairment in children in the developed world, yet it still does not have a diagnostic code. Stephanie’s tireless search for the truth will surely serve as a catalyst for medical breakthroughs in the years to come.
Because of his mother’s unwavering search for diagnosis and treatment, Sebastian is now receiving the help he needs to navigate his world. He is currently studying studio art and art history at the School of the Art Institute of Chicago. His paintings have been exhibited in major galleries, and he looks forward to a career as a museum curator.