Guest Blog by Stephanie Duesing
I Am Blessed He’s Blind
Several months ago, I reached out to my dear friend April Tribe Giauque. She was looking for guests for her blog and podcast, and I was ready to speak. After all, I am an author, speaker, and international advocate for people with cerebral/cortical visual impairment or CVI. I always talk to anyone who will listen about the number one cause of visual impairment in the developed world. I thought this would be an easy assignment. And then April told me that the theme for the month was gratitude.
I shut down.
Having a creative block wasn’t a huge surprise. I’ve struggled with writer’s block since I published my first book, Eyeless Mind: A Memoir about Seeing and Being Seen. I have always felt that I have a fickle muse. Her name is Obsession, and she comes up with a vengeance, leaving no trace until the next time.
My muse does attack. I wrote the 120,000-word first draft of my book manuscript in just over two months, mostly between 10:00 PM and three in the morning. Several times I had to ask my husband not to talk to me as we drove somewhere because I was composing page after page in my head. I didn’t want to forget a word of what my muse had downloaded into my brain at the stoplight.
My husband is a really good sport. I got some raised eyebrows and the silence I needed until we got home. I remember rushing to the computer to pour the torrent of saved-up words into the keyboard, like a mother running to her lost child. My words streamed through my fingers like tears down my cheeks.
I was surprised at my immediate, visceral emotional shutdown when April tasked me with writing about gratitude because I have so much to be grateful for. I do, yet in my imagination, I saw my muse, Obsession, flash a foxy, smug grin and then evaporate as I stared blankly at the keyboard. I tried again and again. I sent April desperate messages explaining my conundrum. She was kind and patient.
I gave up.
So here we are, on Sunday, November 20, and my blog is due today. My muse has kindly tiptoed out from hiding at the very last minute, and I will attempt to talk about gratitude. I am writing about feeling grateful from the perspective of an adult survivor of life-threatening child abuse; a wife; mother; music teacher; and a woman who made a major medical discovery in the field of visual neuroplasticity that led us through an odyssey of shocking medical malpractice and abuse.
For so many of us with less-than-ideal childhoods, the holidays are complicated, and gratitude can be challenging to feel and express when there is so much accompanying trauma. Every year, my church hosts a “blue Christmas” service for those in the community who are grieving. I have yet to go, although I would certainly benefit. I think I’ve avoided going because going means admitting the reality; My mother didn’t just destroy every Christmas with her untreated mental illness; she ruined every birthday and holiday. It took me years after I ended my relationship with my mom to stop dreading every holiday.
It can be challenging to hold onto the dueling realities of past trauma and also gratitude for the good in life for abuse survivors. In my case, the first reality was that my mother wanted me dead; the second reality was that I had a lot to offer the world and a God-given purpose. We all have a purpose, even if we don’t know that purpose yet. I didn’t discover my true purpose until 2017. I was 48.
I mean, sure, I thought I knew what God had in mind for me when I married and started my own family. And if that were all He had intended for me, it would have been more than enough. Having a loving husband and what I thought was a perfectly healthy child was an enormous gift. I made a conscious decision to break the generational abuse cycle so that my son could live free from abuse, terror, and pain.
My husband had my back as I sought therapy to deal with severe childhood abuse, and we jointly made the decision to end our relationship with my abusive mother for safety reasons. I thought that raising my own son in a healthy, loving environment was God’s plan for me. I still do think that, and I am incredibly grateful to my husband for all his support in helping to make that happen. I can never repay him for his support in this deeply challenging, emotionally overwhelming, and utterly necessary task.
I rejoiced in our happy life together while I simultaneously grieved the past. We adult survivors of child abuse are forced to process the bitter and sweet daily, often in the same moment. This teeter-totter of feelings, memories and fresh experiences can be a constant minefield. Having my son, Sebastian, was such an incredible blessing. His imagination, curiosity about everything, and sunny personality filled my heart with joy. I threw myself into my new role as a mother and found immense satisfaction in it. But God had more in store for our family.
In January 2017, we discovered that my straight-A honor student, genius artist, and water polo-playing son Sebastian was almost completely blind, and no one knew, not even Sebastian himself. He was fifteen and just about to enroll in driver’s ed. We were devastated. Terrified for my son’s safety, overwhelmed with guilt at not knowing that my own son was blind, and utterly baffled at the impossibility of the situation, we embarked on a journey to find answers.
We were terrorized and abused by the medical establishment for months in order to get a diagnosis for what turned out to be a common but poorly understood neurological visual impairment. My son has CVI or cerebral/cortical visual impairment, and I am grateful beyond words that now we know. In addition, Sebastian has a unique neuroplastic adaptation to this neurological visual impairment. We discovered it at home and had an enormous battle to bring this important discovery to the medical, educational, and scientific communities.
Sebastian is the only person in the world known to process his vision verbally, which means that he sees with words like a bat sees with sound. Dr. Lotfi Merabet, the director of the Laboratory for Visual Neuroplasticity at the Schepens Eye Research Institute, associate scientist at Massachusetts Eye and Ear, and associate professor of ophthalmology at Harvard Medical School, published a paper on Sebastian’s use of verbal mediation to process his vision in Neurobiologia last fall in collaboration with Dr. Barry Kran, the head of optometrics at the New England Eye Low Vision Clinic at the Perkins School for the Blind.
Discovering Sebastian’s CVI and his unique way of seeing was a very challenging time. It set us on a nightmare journey of medical malpractice and abuse that I wouldn’t wish on anyone in the world. That experience changed me forever. My mission is to end the discrimination against people who have CVI so that no other family goes through what we did.
We were labeled crazy by the medical establishment for the crime of seeking orientation and mobility training with a white cane for my blind son. We were treated like dangerous criminals or like we were seeking illegal narcotics just because my blind son needed a little bit of help to learn to navigate using technology. We were repeatedly verbally and emotionally abused.
Since that time, I have learned that what happened to our family is actually common. People who have CVI routinely go for years, or even decades, un- and misdiagnosed. They are routinely misdiagnosed with autism, behavior and emotional disorders, and intellectual disabilities. The medical and education malpractice people like my son experience is horrifying.
Despite the enormous trauma we experienced trying to get a diagnosis for my son’s CVI, I know that we are truly blessed. One of the biggest blessings that my son’s CVI diagnosis brought was a connection to the CVI community and to the truly amazing medical, scientific, and educational professionals who have dedicated their lives to helping all people who have CVI. We have been enormously blessed to have been able to contribute to the scientific understanding of CVI, visual neuroplasticity, and the link between language and vision. It has been a tremendous privilege to share our knowledge with the best vision and brain specialists in the world, especially Dr. Merabet and Dr. Kran.
The knowledge that Sebastian and I have shared with them has led to major changes in the research around CVI. In August, our family returned to Boston for a second time so that Sebastian could again participate in the research study at the Laboratory for Visual Neuroplasticity at the Schepens Eye Research Institute. It was so good to reconnect with Dr. Lotfi Merabet, the director of the study, and the other staff. According to Dr. Merabet, Sebastian is “the most studied individual with CVI to date.” Dr. Merabet has changed the entire research study based on what they learned from Sebastian’s CVI the first time. They are now tracking the verbal IQ scores of everyone who comes through the study so that they can continue to investigate the connection between verbal ability and functional vision.
I am blessed beyond all measure that my son’s participation has provided real, helpful, scientific information about how vision is processed in the brain, which will benefit generations of people who have brain injuries to come. I have to admit that writing this was difficult. I am tired. I am tired of having to ask typically sighted low-vision professionals, especially teachers of the visually impaired, to accept reality.
My blind son is blind. CVI is a visual impairment, not an intellectual one. All people who have CVI have a human right to prompt, accurate diagnosis and access to appropriate medical, educational, and habilitative services. Not just some of them. Every single CVIer matters. Fortunately, I am blessed with a determined spirit and the same tenacious attitude as a terrier. I don’t give up until I win. And I have science, reality, and basic human decency on my side, and for those reasons, I am grateful.
I am also extremely grateful to my kind and generous friend, April Tribe Giauque, for her patience and wisdom. Thank you for this opportunity to raise awareness about CVI, the “common disability that no one’s ever heard of.” It’s my mission to end the discrimination against all people who have CVI, and your help is more appreciated than I can say. Thank you.
JOIN US NOV 22, 2022