That's Good Parenting

The Invisible Disability Unveiled (CVI): Empowering Families Through the "Eyeless Mind" with Stephanie Duesing

April 23, 2023 Dori Durbin/Stephanie Duesing Season 1 Episode 23
That's Good Parenting
The Invisible Disability Unveiled (CVI): Empowering Families Through the "Eyeless Mind" with Stephanie Duesing
Show Notes Transcript Chapter Markers

Listen to today's episode,  "The Invisible  Disability Unveiled (CVI): Empowering Families Through the "Eyeless Mind" with Stephanie Duesing" as author,  speaker,  and international advocate for cerebral/cortical visual impairment (CVI) Stephanie Dueling joins Dori Durbin. Stephanie shares:

  • About Stephanie's "Eyeless Mind" Book
  • About Cerebral/Cortical Visual Impairment (CVI) 
  • About Stephanie's Son, Sebastian 
  • Different Manifestations of Blindness
  • Discovering Steven's CVI
  • Frustrations of a CVI Diagnosis
  • "Eyeless Mind" Book Reading
  • Steven's Life Now with CVI
  • Helping Kids Understand Blindness

Did you love this episode? Discover more here:

More about Stephanie
Stephanie Duesing is an author,  speaker,  and international advocate for people who have cerebral/cortical visual impairment (CVI.) A former music teacher,  she made a major medical discovery in the field of visual neuroplasticity. Stephanie discovered, diagnosed,  and documented the first known case of neuroplastic verbal visual processing in her genius artist son Sebastian. A survivor of life-threatening child abuse,  she is an unapologetic advocate for all victims of abuse,  animal and human.

Stephanie's Book "Eyeless Mind":

Other helpful links about CVI:

Follow Stephanie:

More about Dori Durbin:
Dori Durbin is a Christian wife, mom, author, illustrator, and a kids’ book coach who after experiencing a life-changing illness, quickly switched gears to follow her dream. She creates kids’ books to provide a fun and safe passageway for kids and parents to dig deeper and experience empowered lives. Dori also coaches non-fiction authors and aspiring authors to “kid-size” their content into informational and engaging kids’ books!
Buy Dori's Kids' Books:

Follow Dori

[00:00:00.490] - Dori Durbin
So today on our show, we have Stephanie Duessing. She is a former music teacher, she's a speaker, now an author, of course, a mama, and she's also an international advocate for people who have cerebral cortical visual impairment or CVI. And by the way, she also made a major medical discovery. So welcome, Stephanie.

[00:00:21.160] - Stephanie Duessing
Hi Dori, thank you so much for having me on your show today. Am so delighted to be here and so grateful for this opportunity. Thank you so much. I really appreciate the kind introduction.

[00:00:34.010] - Dori Durbin
I'm just flattered. I immediately bonded with you because I read your bio on Amazon and I saw that you sneak animals into your house and all the information that you had and I thought, I love this woman already. And I'm excited because you have just such an interesting and fascinating story about overcoming when the odds are against you. So I just am honored to have you here and excited to hear about your book.

[00:01:01.960] - Stephanie Duessing
Well, thank you so much. Yes, and I do sneak animals into the house. I have a long history of subterfuge. Thanks for noticing that. Also did write a book and I appreciate you asking about that as well. My book is called Eyeless Mind. That's a play on having a mind's eye. So it's Eyeless Mind, a memoir about seeing and being seen. And it is the true story of how I, an ordinary music teacher, made a major medical discovery in the field of visual neuroplasticity. My son Sebastian is the only person in the world known to process his vision verbally, which means that he quite literally sees with words, just like a bat sees with sound. And my son spent 6 hours in the FMRI for the Laboratory for Visual Neuroplasticity at Sheppens Eye Research Institute. Dr. Lotview Merrivet is the director of the Laboratory for Visual Neuroplasticity and also associate scientist at Massachusetts I and Ear and also associate professor of ophthalmology at Harvard Medical School. And Dr. Merribit actually captured Sebastian's use of verbal mediation to process his vision in the FMRI. And he published a paper just on my son and his verbal visual processing in collaboration with Dr.

 [00:02:18.800] - Stephanie Duessing
Barry Cran, who is the head of Optometrics at the New England ILO Vision Clinic at the Perkins School for the Blind. And that was published in Neurobiologia, I think it was about a year and a half ago. I think so, yeah. This is a true story. This actually happened to us.

 [00:02:33.350] - Dori Durbin
What is... You said a FMR?

[00:02:36.370] - Stephanie Duessing
Yes. So a lot of people are familiar with getting an MRI scan. And when you do an MRI scan of your brain, for example, if you get a concussion or something like that, an MRI is a very useful tool for showing the structure of your brain. It only shows what your brain looks like. It does not show what your brain actually is doing. And so it's a very limited tool. It can be very useful for certain things. However, for detecting CVI or cerebralcortical visual impairment, it's extremely limited because we know that more than 10% of people who have cerebral palsy have normal appearing MRI scans, and yet they still have cerebral palsy, which is caused by brain damage. Brain damage can be microscopic and undetectable on an MRI and still have massive implications for your life quality and things that happen to you. And so an sMRI is a functional magnetic resonance imaging scan, and that is different from an MRI in that it shows what your brain is actually doing. And so my son spent 6 hours in the fMRI back in 2018. We went back last summer to participate in the research study.

[00:03:50.880] - Stephanie Duessing
Again, according to Dr. Marabett, my son is actually the most studied individual in the world with CBI. And so he spent additional time on top of that 6 hours in the FMRI in that they showed my son's visual cortex literally lights up and is functioning when he's thinking the verbal descriptions of how we describe how things look. And when he stops thinking those words to himself, his visual cortex goes dark, and he's literally blind. And so what that means is my son actually is the only person in the world known to be able to choose to see or not see with his eyes wide open. Wow.

 [00:04:31.110] - Dori Durbin
Okay, if I'm trying to envision this, I know you compared it to a vision of a bat. How would that look if he were to walk into a room? What would he see per se, in reality versus what he's experiencing?

[00:04:47.450] - Stephanie Duessing
So this is complicated to answer, and it's easier for me to describe, first of all, a little bit about what CVI is, and then I can tell you what he can't see, and then I'll tell you how he does see, if that's okay.

[00:05:01.600] - Dori Durbin

[00:05:02.340] - Stephanie Duessing
Okay, so CVI is a brain based vision impairment that's entirely different from ocular blindness. Ocular blindness is what most people think of it's the stereotype of what people think of when they think of blind. Right. And actually what most people think of as blind as having everything be dark. And I want to be very clear that that's a stereotype. The vast majority of people who have ocular forms of blindness have some residual vision. It might just be light perception, or it could be some minor part of their vision is still functioning. Right. So just the idea that everything's dark means you're blind, that's a stereotype. It's really not true for the vast majority of blind people. Okay, so ocular blindness is caused by damage to the eye and to the optic nerve. CVI is caused by damage to the brain. And I attended a very interesting lecture online last summer with Dr. Arvind Channa and Dr. Gordon Dutton, who are two big experts in CVI. And they have actually measured the amount of time it takes between the light hits the retina of the eye where it's transmitted into an electrical signal. It travels through the optic nerve, past the lateral geniculate nuclei, or the LGN, and it goes to the back of the brain.

 [00:06:17.680] - Stephanie Duessing
And they have measured the amount of time it takes between when that light strikes the eye and there's any conscious perception of sight. And it takes a 10th of a second after the light hits the eye, travels through that. The signal travels through the optic nerve, gets to the back of the brain. When it gets to the back of the brain, that's when the conscious perception of sight begins. And so our eyes, we literally do not see with our eyes. Our eyes are literally just light collectors. They collect the light. They transmit it into a signal. All of our conscious perception of sight happens within our brains. And so that saying we see with our brains is not a slogan. It's the literal truth. All of our vision is happening in our brain. And in fact, we don't even need eyes to see. There are human beings alive on the planet right now who don't have any eyes, who can see. And I will talk about Daniel Kish briefly. Daniel Kish K-I-S-H is a real person. He lost both eyes to cancer and infancy and taught himself to echolocate. Daniel has no eyes, but he can ride a bike.

 [00:07:30.760] - Stephanie Duessing
He can describe complex visual scenes of places he's never been to. If you take him somewhere he's never been, he can tell you what he sees accurately. He can even read if the letters are three dimensional. Okay? So he teaches blind people to echo like he does. It's actually a teachable skill. Other people have learned to do it. So, like Daniel Kish, my son has unique visual processing. When they put Daniel Kish in the fMRI, his visual cortex lights up when he hears echoes, but not when he hears ordinary sounds. Right? Okay, so my son has unique visual processing, just like Daniel Kish does. Okay? So CVI is caused by damage to the visual pathways of the brain. So our conscious perception of sight begins in the back of the brain. And there are two visual pathways. There's the dorsal stream and the ventral stream. And I always think of the dorsal fin of a shark, right? The dorsal stream comes up the back of the head. Right? And so that's kind of the wear function of visual processing. And people who have damage to the dorsal stream of the brain, they often have difficulty finding a familiar face in a crowd.

[00:08:38.090] - Stephanie Duessing
A child who has dorsal stream dysfunction might have difficulty pulling out their shoes from a pile by the door. They might have difficulty finding a toy in a crowded toy box. Right? And if you know that children's book where's Waldo yes. People who have dorsal stream dysfunction find just even looking at that book to be it can actually be physically painful. It is so overwhelming. They can't look at that crowded cluttered scene. It's awful for them. Their brain can't sort it out. They can't see it the way we do, and it's uncomfortable. Then we have the ventral stream of visual processing, and that's the part that's involved in visual recognition. And when we have visual recognition, we have an image in our brain. And then when our eyes see something, the new information is compared to the image that was already stored, and then a match is made or it isn't, and we go, AHA. So when I say the word mona lisa, when I say that name, you have an image in your brain, you know exactly what that looks like, right? And then if you were to go to an art gallery like the louvre and you saw it, it would just match up, and you would have instantaneous effortless recognition.

 [00:09:53.490] - Stephanie Duessing
That's visual recognition. Okay? So for people who have damage to the ventral stream of their brain, different parts of the brain are involved in recognizing different things. And so if you take your right hand and you touch above and behind your right ear, that's where the right fusiform gyrus of your brain is, and that's where facial recognition takes place. And difficulties with facial recognition is called prosopagnosia. That's the technical term for it. When you can't recognize faces and very close by, that is where your ability to recognize your environments is. And so people who have damage to the right fusiform gyrus of the brain often also have something called topographical agnosia, and that's the inability to recognize their environments. Okay? So that means that no matter how many times you walk into your own house, how many times you walk into your own bedroom, nothing ever looks familiar, because the brain is literally not recording visual memories of what's around you. People who have topographical agnosia cannot form mental maps of their world because they have no visual landmarks. Nothing ever looks familiar anywhere. Okay, so different areas of the brain are involved in recognizing objects, recognizing biological forms.

 [00:11:12.300] - Stephanie Duessing
There's actually a finger agnosia. There are people alive who cannot recognize their own fingers or anybody else's. So different parts of the brain do different things. There's a part of the brain that's specifically involved in recognizing words, letters, numbers, and simple shapes. So depending on where the brain damage occurs, it very much affects how each person sees. And that's why we say professor gordon dutton has often said, if you have met one person with CVI, you have met one person with CVI. They are each unique, and they often share commonalities, but they each will have very unique things as well about the way that they see. And so I want to talk now about what my son can't see, and then I will tell you how he does see. For my son, he has damage to the right fusiform gyrus of the brain, as well as damage in other areas as well. So he actually has a dorsal stream dysfunction, and he has eventual stream dysfunction. He's got both. His vision is very severely I mean, he has almost none, to be totally honest. And so what that means is my son has difficulty finding a face in a crowd, in a crowded situation, going to the grocery store.

 [00:12:29.310] - Stephanie Duessing
If you can imagine when you're standing looking at the shelves full of all different products, that's where's Waldo for people with dorsal stream dysfunction, it's overwhelming and can actually be nauseating for them, trying to figure that out. And then he also has ventral stream damage. And so for my son, he has prosopagnosia or face blindness. He has no ability to recognize his face or anybody else's. He has topographical agnosia, and so he cannot recognize any environments anywhere, ever. He also has object agnosia, which is the inability to recognize any objects. He also has an inability to recognize biological form. So that means, in addition to the face blindness, my son cannot recognize his own hands, face, or body. He can't recognize the shapes of animals, et cetera, et cetera, et cetera. The only things that my son can recognize, like a typically sighted person can, are words, letters, numbers, and simple shapes, because the parts of his brain that are involved in visually recognizing those things weren't damaged when he was born. And so my son, we won the lottery. It was nothing we did. It was pure luck. Those parts of my son's brain were not damaged.

 [00:13:50.400] - Stephanie Duessing
And my son, therefore, has visual access to numeracy and literacy. And so he was 15 years old, a straight A honor student. He's a genius artist who draws and paints with photographic realism when he wants to. And he was on the water polo team and his high school and the diving team, and we had literally no idea that my blind son had any disability of any kind whatsoever. And he was 15 years old when we accidentally figured it out at home right before we enrolled him in driver's ed. And we dodged a bullet. And I still get goosebumps when I talk about that. It just goes right up my arms. My son, as I mentioned before, is the only person in the world known to process his vision verbally. He has extremely high verbal skills. And so what Sebastian taught himself to do is he taught himself to memorize the verbal characteristics of everything and everyone around him that he encountered in daily life. And so before I had cataract surgery about two years ago, I used to wear glasses all the time. So my verbal characteristics used to be tall, blonde glasses. And when my son thinks those words to himself, he literally gets a momentary glimpse of what I look like.

 [00:15:08.400] - Stephanie Duessing
It's just a flash of understanding, he says. It's like he just gets an idea of it, and then it's gone. There's no retention in visual memory. There's no image in his brain, like of Mona Lisa. It's gone, completely gone. But he can get these momentary glimpses of objects and people and things. But when you ask, what is it like when he walks into a room? What does he see? It is common for people who have CVI to have normal acuity. My blind son started wearing glasses when he was in first or second grade. I think it was first grade. And he passed every vision test every single year, despite being blind, because he has normal acuity. And because he can read. He can read the letters on the eye chart. And our optometric exams are decades out of date. They just are decades out of date. And so we need to start screening kids for CVI. We need universal screening. And so I'll talk more about that in a little bit. For my son, what he says, by the way, I will tell you, he is brilliant. He scored a perfect 150 on the verbal portion of the IQ test.

 [00:16:15.960] - Stephanie Duessing
And despite being almost completely blind, he always scored in the 99th percentile in both math and English on all standardized testing without any preparation whatsoever. We are not homework folks in my house. I actually don't believe in it until you are, at least in middle school, right? I mean, I don't believe in it. So he was not pressured. He just does. And so we got lucky, right? For Sebastian, he's perfectly able to describe his own functional vision. And he says that for him, his visual world is like living in a universe where nothing ever looks familiar except for words, letters, numbers, and simple shapes. And I call him my sign spotter. So when we're driving in a car somewhere that I haven't been to for a while, or I've never been like, I'm busy focused on the traffic and getting us there without crashing the car. And Sebastian, I'm like, okay, if you see the sign, let me tell you, there's the sign, right? Because his vision is like being out in the middle of a foggy, foggy ocean. And he can see colors and swirls and motion, and it's like being in this fog of color.

 [00:17:26.940] - Stephanie Duessing
It's useless, fog of color. And every once in a while, a sign floats by, and it might be a sign to a major grocery store. It could be Walmart. And he can't see the store, the gigantic store, he can't see that. But the Walmart, I mean, that floats right past. And everything is all the signs are unattached to any physical object that he can recognize. And so there's no way to make a mental map of this world because it's like, imagine being out in that ocean and the sign floats past, and then it disappears. And you turn around, you have no idea where it went. It wasn't attached to anything. There's nothing around you to physically attach to. I always think of that. Laura Ingle's Wilder book Little House on the Prairie, one of those books in the series, there's a blizzard and I don't remember which one it is, and they talk about people being lost, going blind in the blizzard because they literally freeze and die between the barn and the house because they can't find their way back because of the snow. Right. There are different ways of actually going blind, and you could go blind in a blizzard because of the snow.

 [00:18:38.510] - Stephanie Duessing
My son, he's blind. Our definition of legal blindness is 100 years old and completely inadequate to what we know about vision. Now, it needs to be updated, because our definition of legal blindness here in the US. Is based entirely on acuity. And acuity is just a tiny fraction of the whole part of visual processing. Vision is so much more complicated than just acuity. And so we really, really need to make some changes. Okay.

 [00:19:11.460] - Dori Durbin
My mind is first of all, it's blown because I'm envisioning him functioning, diving, playing lacrosse, doing art, things that don't have letters, numbers, true shapes.

 [00:19:24.390] - Stephanie Duessing
How did he do that? That's a great question, and I'm really glad you asked it. So my son has something called blind sight. Blind sight is, I think, a function of motion perception. And we've known about it for 100 years. We have known about it since World War I, when the soldiers came back with gunshot wounds to their heads and survived, and their eyes and their optic nerves were fine, but their vision was gone or severely impaired. And so they have literally studied blindside. Now they've known about it for 100 years. And what it is there's a really great article, and I can send a link to you to put in your show notes from NPR, and it's entitled the Blind Woman Who Saw rain. And it's about a woman who had a stroke as an adult, and she lost all light perception. And her doctor's like, well, you're blind now. You can't see anything. And sometime a few weeks on by, and she realized she could see the motion of the rain coming down the windshield of the car. She could see the motion of her daughter's ponytail as her daughter skipped ahead of her.

 [00:20:27.050] - Stephanie Duessing
She couldn't see the ponytail. She could just see the motion because there's no light perception. Everything's dark like we talked, that stereotype of blindness. And so this is blind sight. And people who have blind sight very often have the ability to move through space without bumping into things. Wow. And so you could take my son and put him in a warehouse filled with obstacles and clutter and things everywhere, and he could walk all through that and never once bump into anything. And in fact, he never did. That's how he moves through space. He has a very good ability to detect motion. And so he wasn't on lacrosse. He was on water polo. Water polo? Okay. Yeah. As a child, he did gymnastics. He did dance. I mean, he played piano. He did sanitina competitions when he was in second and third grade. I mean, we had no idea, because here's my kid who was doing T ball and running around with all the other little kids on the soccer field doing cartwheels and picking dandelions and looking 100% typically cited. And I would like to address that because there's so much misinformation about CVI out there.

 [00:21:35.790] - Stephanie Duessing
CVI can be an entirely invisible disability. We were repeatedly and incorrectly told by some of the best medical professionals here in the US that there was no possible way that my son could have CBI or any neurological visual impairment because he had all normal developmental milestones. They said all people who have CDI, they have developmental delays. Well, the reality is, we have research coming out now showing that one in 30 students in a regular education classroom have symptoms of CBI, making CBI more prevalent than autism. People who have CBI are all around us. And in fact, we know, we've known for ten years now that CVI is the number one cause of visual impairment in the developed world. It is more common than ocular blindness. It is not rare at all. It's the number one cause of visual impairment because brain damage is not uncommon. Think about it. You can develop brain damage at any age. Head trauma, stroke, right? Any type of anoxic incident, surviving a drowning incident. Anything that does that can leave you with brain damage, that affects your visual processing long term. COVID. We know COVID does this as well. Yeah.

 [00:22:52.740] - Stephanie Duessing
So this is a very serious problem that anyone can develop at any age. And we know that part of the reason we have so many people with CBI now is because our NICU care has increased exponentially in the last couple of decades. And we have all of these tiny preemies who did not used to survive, who are now surviving, and they have brain bleeds. They very often have brain bleeds, unfortunately, and that often leaves them with cerebral palsy, with epilepsy, and with CBI.

 [00:23:26.360] - Dori Durbin
Wow. I had no idea it was that common.

 [00:23:31.810] - Stephanie Duessing
And we CVI moms often call CVI the common disability that no one's ever heard of. No one knows anything about it. And, I mean, we had a horrific, horrific experience trying to get a diagnosis for a blind child who's always appeared to be typically sighted. Can you imagine that's?

 [00:23:48.350] - Dori Durbin
Exactly. Normally, when you find out that somebody has a child that has a disability, it's because they've experienced something that they thought their child could do and should be able to do, not that they've been functioning this whole time, 15 years, without any true visible issues.

 [00:24:04.590] - Stephanie Duessing
Right? Yeah. And it was terrifying, because the way we figured it out was we were literally going through old photos. And here's my son, who's a very gifted artist, who draws and paints faces and everything else that interests him with almost photographic realism when he wants to. And we were going through old photos, and I am that mom. I made my son a baby book. And then I decided, I'm not crafty. I'm never doing this again.

 [00:24:29.430] - Dori Durbin
We are all that mom a little bit

 [00:24:31.020] - Stephanie Duessing
Yeah. I was just like, okay, I got the one that matters.

 [00:24:35.120] - Dori Durbin

 [00:24:35.420] - Stephanie Duessing
And move on to other things that interest me now. Yeah. And so we literally had not looked at these pictures in years and years. And so I was narrating to my son about who was in the pictures with them, because our family is really spread out in Canada and Texas and all over the place, Missouri, and so we don't see people all the time. We can go for years without seeing people. And so I was saying to my son, who is an only child, we were looking at his baby pictures and saying, oh, look, there you are with your cousins from Canada that we haven't seen for seven years. And oh, look, there you are with our neighbors at our old house that we used to live in when you were a baby that we haven't seen since you were baby, those kinds of things. And we've been doing this for half an hour, and my gifted, brilliant, straight on our student son has been looking at his own face now for half an hour. And we kind of migrated up into the toddler preschool years, and a really cute picture of him popped up on the screen about three years old.

 [00:25:30.830] - Stephanie Duessing
And I said, oh, look. Who's that/

[00:25:33.850] - Dori Durbin
He didn't know?

 [00:25:36.570] - Stephanie Duessing
And he said, how should I know?

 [00:25:38.830] - Dori Durbin

 [00:25:40.750] - Stephanie Duessing
This was in January of 2017. And back in that time, I had never heard of CVI, I had never heard of face blindness, Prosopagnosia. I didn't know it was possible for a human being to be face blind. And so I was just like I mean, all the hair stood up on my back, and I just looked at him and I was like, what do you mean that's you he said, if you say so. I'm like, this is totally not typical. And I wasn't scared so much as just astonished, right? This kid draws beautiful faces. Right? So then I started quizzing him about other people in the pictures. Myself, my husband, other close family members and friends that we see all the time. And I mean, here we were, 15 years younger in these pictures, with less gray hair and maybe a little thinner, pretty obviously us. And he was guessing. Wow, guessing, not knowing. And I was like, that is not typical. And it was right before bedtime. Everybody went to bed except me. And I started researching on my phone, and there was so little factual information I could find about CVI back in 2017.

 [00:26:48.310] - Stephanie Duessing
It took me until it was like 02:00 in the morning when I finally found the right combination of search words on Google to bring up prosopagnosia. And then it was like, AHA, this is a real condition. And the information I learned was wrong. Back in 2017, it said it was very rare. Well, The New York Times just published an article a couple of months ago. One in 30 people have prosopagnosia. It's a totally common symptom of a totally common visual impairment. Nothing unusual about it at all. Right. But I didn't know that in 2017, so I was like, okay, well, it's real, and my son just has a quirk. That's very rare, but it's no big deal, right? He's fine. And then the very next day, we discovered that he had taught himself to navigate by counting his steps and turns and was navigating our own home that way and our very small neighborhood and his extremely architecturally complex high school. And that's when I got scared.

 [00:27:45.650] - Dori Durbin

[00:27:47.510] - Stephanie Duessing
For his safety. I mean, it was just terrifying.

[00:27:50.870] - Dori Durbin
How could you possibly drive? Yeah, I don't even know how you would do that, honestly, because the car is taking over.

 [00:27:57.740] - Stephanie Duessing
That would be scary. Right. We didn't know if he could drive at that point at that moment. We know now. Sebastian can never drive because, as I said, his vision is usually off when he's awake. Right? Yeah. And when his vision is on, it's so minimal. It's so minimal, but you can actually see. I haven't described everything about his vision. It's actually worse than what I've told you. There's more to it. But on the basis of time, I think people have a pretty good idea. It was terrifying. And we went overnight from just feeling like the very lucky parents of an extremely gifted high schooler to not knowing if my son could ever live independently. And he obviously had plans to go off to college. He was planning to go downtown Chicago to go to college. Downtown Chicago. And I was like, by a bus, right? I'm like, I don't know what I mean. It was just overwhelming. Yeah.

 [00:28:51.370] - Dori Durbin
I can't even imagine, honestly, because that's a big decision already. But then when you see what you thought was going to be your son's future change and literally turn inside out, that had to be really scary.

 [00:29:02.310] - Stephanie Duessing
It was. It was very scary. And so I immediately reached out to our neuropsychologist, who had just done a full neuropsych evaluation on my son for a totally unrelated concussion, because I knew this was neurological. This is very obviously neurological. He's passed every vision test every year, and this is obviously neurological caused by something with the brain. And so I reached out to him. We made an appointment, and I was using the correct medical terminology to describe my son's common symptoms of his common visual impairment from that very first appointment. And that doctor said, I can't help you, and I don't know anyone who can. Good luck with that. And he dropped.

[00:29:49.310] - Dori Durbin
Oh, my goodness.

[00:29:50.710] - Stephanie Duessing
That's horrible.

[00:29:52.430] - Dori Durbin
So you went from unsure to. In despair, basically.

[00:29:57.710] - Stephanie Duessing
Well, and then it just got worse, because CVI, even though it is the number one cause of visual impairment in the developed world, it does not have a diagnostic code. And there's only a handful of medical professionals that I personally know in this entire world that can competently diagnose it, as far as I'm aware of, who have actual factual information about it, because there's no diagnostic code for it that's considered not real. Even though just this past year, the National Institute of Health here in the United States, our NIH has recognized CVI as the number one cause of visual impairment in the developed world this past year, So it's really true, right? And we're working on a diagnostic code, and I'll talk more about that, too, if you want, later. So what happened to us was that we saw optometrists neuroptometrists, ophthalmologists neuro, ophthalmologists neurologists neuropsychologists, and we traveled across the country looking for anyone who could diagnose my son. And we have to remember here that we were not looking for academic help from my son. He didn't need any. He was in all AP and honors classes and excelling at everything. I mean, we didn't need academic help from his school.

 [00:31:12.520] - Stephanie Duessing
What my son needed, because he has topographic Lygnosia, he needed help learning to navigate using technology. And then later, it literally took us months of conversations to figure out all the ways that my son's vision is different from typical. We figured out prosopagnosia, the face blindness, and the topographic Lygnosia, like, in two days, and we suspected object agnosia, but we weren't sure. And it took months of conversations where we kind of unpacked all this verbal visual processing. I knew he was compensating verbally using words to somehow figure out what things and people were, but we just didn't understand the extent of it. And so in that several months time period, we discovered that my son has a very common and well documented of CVI called visual tiring or visual exhaustion. And this is a common, well documented symptom of CVI. People who have CVI very often lose all their vision uncontrollably randomly due to exhaustion, illness, overwhelm, stress, all these things. And whatever the little vision that they have, they can lose that little bit that they have randomly and be entirely blind, and it doesn't come back until they're rested. And, well, we didn't know that.

 [00:32:36.070] - Stephanie Duessing
And then we figured it out when we were I was walking with my son. We walked 3 miles downtown Chicago on a 95 deg day, and my son suddenly became unable to read his phone, which he was relying on to navigate. And then I was like, okay, we really need he needs a white cane. Yeah, a white cane. And he needs orientation and mobility. And the only way to access those things is to have an accurate diagnosis. We had to get him a diagnosis so that he could live independently. And we were labeled crazy by the medical establishment and repeatedly verbally and emotionally abused. And I was physically threatened by a neuro ophthalmologist we'd never met. Yeah, because they didn't believe us.

[00:33:20.350] - Dori Durbin
Okay, first of all, let me just commend you on not giving up, on taking that next step. And I know this is part of what you do. Now, you're an advocate for CVI, right?

 [00:33:34.060] - Stephanie Duessing
Oh, yeah. I couldn't let this happen to another family.

 [00:33:37.240] - Dori Durbin
And I think that it's inspirational. But it's also so crucial for moms to know that it's not necessarily something that's going to stand out to you about your kids. Like, you're always looking for, what if something happened and am I going to pay attention? But sometimes even what you did, just that gut reaction like, this doesn't seem right. How did you take yourself to that next spot to be able to just pursue this to the point where you actually got an answer?

 [00:34:08.430] - Stephanie Duessing
Well, I'll give you a very brief answer. I'll try my best, but I'm actually a survivor of life threatening child abuse, and my mother actually had Munchausen by proxy, which, if you know anything about mental illness, that's a very severe disorder where parents usually a mother, deliberately injure or harm their own child in order to get attention and sympathy. And I actually survived that growing up, and I consider myself lucky to be alive. So when we discovered Sebastian, I have a very supportive husband who actually witnessed abuse. I mean, he actually it was so open in my family that my husband actually saw pretty horrific abuse. So he knew and he was very supportive. And we made a conscientious and very thoughtful decision when I was pregnant with Sebastian, with the help of a wonderful therapist, that we had to end my relationship with my mother for safety reasons. And there just was no safe way to include my mom in my child's life that we could protect my child. So it was devastating and the most horrible thing I've ever had to do other than this whole CBI thing. But at the same time, it was also the best thing I ever did, and we have no regrets about it whatsoever.

 [00:35:28.170] - Stephanie Duessing
So when I started going through this diagnostic process, this horrible experience, we were literally labeled crazy. And although no one ever came out and said, you're a munchausen mom, it was implied repeatedly. And there was no way on earth I was going to let them apply that label to me. When I had broken that chain of generational abuse deliberately and intentionally, there was no way I was going to let them label me with that. So that was one thing. And then the other thing, I think, was Lucas Frank from the Seeing Eye. He is the only reason we got help. And he is, I think, there are angels on this Earth and Lucas is one of them. And he is an internationally known guide dog trainer. He teaches people who are deafblind to use a guide dog. He's at the Seeing Eye guide dog training thing. And when this all started in 2017, when we first discovered that my son was navigating our own home by counting his steps and turns, I knew nothing about blindness. I knew nothing about guide dogs. I was so ignorant, and I was terrified for my son's safety. I will be honest about that.

 [00:36:43.330] - Stephanie DuessingI was so scared for him. I was so afraid for him. And I thought, well, maybe a guide dog would help. I didn't know anything about blind sight that he could you know, I mean, I just it was mystifying to me that he could walk through this everywhere and not crash into things. I didn't know why he could when he couldn't see his environments, right? It didn't make any sense because I didn't know. So I reached out to the CI in those first few days, and I talked to a wonderful person. Her name is Pauline Serf Alexander. And she picked up the phone, and I was like, I'm sure sounded like a lunatic on the phone, saying, my son's 15 and straight, a honor student, and he's blind. And we just found out, and we didn't know. And she was very calm and very kind on the phone, and she asked me some really important questions, and she said, well, is he bumping into things? And I said, no, he's never bumped into anything. And she said, well, and I didn't know this. She's like, well, a guide dog's job is to prevent a blind person from bumping into things.

 [00:37:41.220] - Stephanie Duessing
So if he's not bumping into things, it's probably not a good fit, because they'll just turn into a $50,000 pet because there's $50,000 worth of training in this guide dog. And I was like, well, first of all, we're all allergic to dogs, so we don't want one anyway. And I was just, like, freaking out here, and I need someone to talk to. And also, we don't need to take a $50,000 guide dog away from someone who does bump into things, right? So I thought that was really nice, and I thought I would never hear from the Seeing Eye again. But the reality was, a couple of days later, the phone rang, and it was Lucas. Frank and Pauline had talked to him, and he was concerned about our family, and he reached out and he called. And I won't tell the whole story here, because out of time, but Lucas just kept coming back. He just kept coming back. And a couple of months ago, by be like, how's it going? I'm like, It's getting oh, my God, it's a disaster. And he'd be like and he helped, and he helped, and he helped. And he was actually the only reason that we got help connecting with actual experts in CBI.

 [00:38:43.840] - Stephanie Duessing
As I said, there's just a tiny number of actual experts in CVI in this world. And through Lucas, we actually finally connected with professor Gordon Dutton, who is in Scotland, who is one of the leading experts in CBI. And professor Dutton was like, how can I help you?

 [00:39:02.110] - Dori Durbin
That's amazing. So you finally found the right person. Really?

 [00:39:06.640] - Stephanie Duessing
Right. And it was because I reached out in a weird direction. Right. Like, I mean, guide dog. My son doesn't want a guide dog. He doesn't need a guide dog. He doesn't bump into things, and he's a fast walker. And a guide dog would actually slow him down. He feels he's fast. He's got long legs, and he just goes right. But because I was desperate and I didn't know where to turn for help, I turned anywhere and asked for help. And that turned out to be the saving grace. Wow.

 [00:39:36.380] - Dori Durbin
What a blessing. If you hadn't had that, you would never have found him and never connected.

 [00:39:41.530] - Stephanie Duessing
Yeah. If I had not made that one phone call, we would never have connected with the right people, and we would have been permanently labeled crazy.

 [00:39:51.470] - Dori Durbin
You sound very insightful and very aware.

 [00:39:59.630] - Stephanie Duessing
Not to be deranged here.

 [00:40:04.530] - Dori Durbin
Not to change the subject, but I definitely want to have the opportunity to hear some of your book. Would you mind reading some of it?

 [00:40:11.430] - Stephanie Duessing
Sure, I would love to. I would love it.

 [00:40:15.590] - Dori Durbin
That would be great. And your book is actually called the eyeless mind, right?

 [00:40:20.540] - Stephanie Duessing
Yes, it's here. It's called eyeless mind. And the portrait on the front was painted by my blind son Sebastian when he was I think he was 15 when he did that. I think it's an it's either acrylic or oil on canvas. I forget.

 [00:40:33.310] - Dori Durbin

 [00:40:36.650] - Stephanie Duessing
You can't recognize his face or anybody else's. We had no idea that he was blind. All right, about how long would you like me to read?

 [00:40:46.930] - Dori Durbin
Give us a good minute.

[00:40:48.550] - Stephanie Duessing
I abandoned Sebastian 540 times between the ages of three and six, minus that week in February. I kept him home when my mom died. There was also the week when he had strep and assorted. Other days, when he was under the weather, sebastian often had an upset tummy in the mornings. Mama, my tummy hurts, was his morning refrain. Let's say another ten days. That comes to about 520 times. I didn't mean to abandon him. I would never intentionally abandon any living creature, especially my own child. I did intentionally dump my mom, though, while we abandoned each other. Really? It's a different thing, abandoning a child. Sebastian cried every time I walked off and left him. Honestly, it was concerning, frustrating, and totally mystifying at the time. I wonder how many things would have been different for Sebastian and myself without that universe of pain that threatened to crush us like new stars in a nebula. 

 [00:41:51.490] - Dori Durbin

I have to tell you to stop, because I want you to keep reading. Oh, my goodness. Your heart is just so visible in this. This is beautiful.

 [00:42:02.230] - Stephanie Duessing
Thank you. I am really honored that I was actually a finalist in the Chicago Writers Association Book of the Year Awards a couple of years ago. My book came out a couple of years ago, and, I mean, I've never taken a creative writing class, and here I was competing with people with MFAs.

 [00:42:19.950] - Dori Durbin
Show again. If your heart is willing to do something, you're going to figure it out and find a way, just like Sebastian did.

 [00:42:27.340] - Stephanie Duessing
Well, thank you. As I said to you earlier, before we started the recording, I mean, I can't read the second half of the own book. The book that I wrote, it's just too traumatic. There's so much trauma there. But I wrote it because once we figured out, once we were going through this diagnostic journey, we were repeatedly and incorrectly told that CVI, or that prosopagnosia in particular, was so rare, it was impossible for my son to have it. It was just so vanishingly rare. And there was no possible way that my son could have any neurological visual impairment because he had a normal MRI, and this was all not factually true. And then once I connected with Gordon Dutton and took the course, and it was like, oh, this is the number one cause of visual impairment, and these are common symptoms of a common visual impairment. And I was outraged because I knew that if we were being treated like this by the medical establishment, we could not be the only ones. And I was right. And actually, people who have CBI, it is common for them to go for years and decades on and misdiagnose.

 [00:43:36.300] - Stephanie Duessing
This happens all the time, not just to our family, which is why I'm here today. And it is common for people who have CBI to be routinely misdiagnosed with autism, intellectual disabilities, and emotional and behavioral disorders. In fact, they're just diagnosed with everything except what they are, which is blind and visually impaired. And so that's why I'm here. And that's why we came forward with our story, because we could not allow this to continue to happen to people, and we could not. I got a diagnosis for my son. I got white cane training for my son. I couldn't climb into the lifeboat and leave everybody behind.

 [00:44:14.930] - Dori Durbin
Well, that's amazing that you have that heart, because it'd be easy to get kind of caught into a world where you just feel pity instead of feeling empowered to help other people. And I'm glad you're doing this.

 [00:44:26.940] - Stephanie Duessing
Well, thank you. And like I said, Sebastian is actually now we went back to the Laboratory for Visual Neuroplasticity last summer with Dr. Lafaye Marabett, and Sebastian participated in the research study again. And, in fact, Dr. Marabette said that Sebastian is the most studied individual in the world with CBI. And what they learned from my son's use of verbal mediation to process his vision, they have entirely changed the direction of the research study. Going on there, based on what they learned from my son the first time, and they are now tracking the verbal IQ scores of everyone who comes through that study. So this has been, I think, a big change in understanding CBI, understanding that it can be an invisible disability and still be very severe. Right. My son is I didn't get a chance to explain every detail of his vision, but my son is blind. He's blind?

 [00:45:21.630] - Dori Durbin
Yeah. Now, how has this changed his projected future before to what it is now, though?

 [00:45:28.600] - Stephanie Duessing
My son's an outstanding guesser. He guesses who and what everything is around him by their verbal characteristics, by the way we describe them. Like tall, blonde glasses for me right. That he can guess. That's who I am. So my son actually got a five on the Apr history exam blind because he can tell just from the colors and the style of the brushstrokes, what the artwork is and who made it.

 [00:45:56.200] - Dori Durbin

 [00:45:57.170] - Stephanie Duessing
And he received the Presidential Award and scholarship to the School of the Art Institute in Chicago, where he was studying art history prior to the pandemic. And then the pandemic came, and he took a year off. And I was really happy about that because art school online, especially because my son does not just draw and paint. He likes large scale sculpture. He does a lot of ceramic work. He does book binding. He does everything. Yeah. He's always been a maker. And so he took a year off. And in that time, he connected with a science professor that he'd had at the School of the Art Institute. And he has completely changed his focus. He's moved to a different university, and he is now in a Stem field, and he is actually working at his dream internship in a Stem field.

 [00:46:43.860] - Dori Durbin
Wow. That's so cool. So he followed the literature and the physical part of science anyway.

 [00:46:53.090] - Stephanie Duessing
Isn't that interesting? Yeah. He loves what he's doing, and he's really good at what he's doing, and he's enjoying life, and he lives independently. He uses his white cane when he needs to. And I think it's really important for everyone out there to understand that even people with ocular forms of blindness don't always use a white cane or a guide dog. There are some people with ocular forms of blindness who don't use either one, or they only use them when they need them, like in an unfamiliar situation or where they particularly want drivers to recognize that they might not see them and they might use it in other circumstances. And so people who are blind often are on the receiving end or visually impaired of a lot of ignorance from typically sighted people accusing them of faking their blindness because they don't look like they're blind enough to meet other people's criteria. And I really think it's important that we as a society need to learn about the reality of the complexity of visual processing. It is not just black and white. Vision on, vision off. There are a million gradations between those two things that affect vision.

 [00:48:08.480] - Stephanie Duessing
And each person is unique. And you cannot assume that a person sees what you see just because they look like they can see what you see, or they can tell you things about what you see or what my son can identify anything. Like I said, he got a five on the Apr history exam almost completely blind. There's no way to tell that my son is almost completely blind academically, socially, or physically. I have got photo after photo of my blind son who can't recognize his face or anybody else's making regular, consistent eye contact from his earliest days.

 [00:48:46.430] - Dori Durbin

 [00:48:47.200] - Stephanie Duessing
Photo after photo. And we know remember, we talked about blind sight. My son has something called affective blind sight, which is something that Professor Gordon Dutton taught me about. And so my son has always had the ability to recognize facial expressions, even though he can't recognize the faces themselves. He's always been very responsive to facial expressions. And I think that that would be highly motivating for an infant to look for facial expressions they can recognize when they can't, even if they can't recognize the face.

 [00:49:20.610] - Dori Durbin

 [00:49:21.460] - Stephanie Duessing
And so we know why my son made eye contact, even though he has prosopagnosia. We know there's a reason. And my son isn't the first person on the planet to have had affective blindside. This is something that's been known and studied before.

 [00:49:36.310] - Dori Durbin
I'm just kind of pulling everything together because we just have a couple of minutes left. But it seems to me like if I was a parent who wanted to equip my kids with information about CVI, one of the first things that you said just a minute ago was that each person has a different experience of blindness, if they have blindness. And I think that just goes even beyond CVI. It goes into any illness or any disability. Is that awareness that every person is going to have that experience differently? And if we can teach our kids that early on, that's excellent. Right?

 [00:50:15.480] - Stephanie Duessing
Oh, yeah. And to be accepting of others differences. And it's really important to understand that. CVI. I'm so grateful to the Perkins School for the Blind in Boston. They came out, I think, a year and a half ago or so with a statement. CBI is not an intellectual disability. It is not. It's a vision impairment, blindness. And so people who have it, they may require blind skills like a white cane. They might need braille, depending on where their brain damage is and what's easiest for them. But this does not make them intellectually impaired. And so we need to be really accepting of different supports that people need. Why is wearing glasses acceptable socially? But having a white cane is somehow terrifying to everybody. Right. It's irrational. There's irrational fear that's there well, I.

 [00:51:15.610] - Dori Durbin
I Am just humbled and amazed, honestly. I'm thinking through your path as a mom and as a family and for your son. Your son doing so excellently. Good job, mom. That's amazing.

 [00:51:28.090] - Stephanie Duessing
Thank you. Really, as a mom, we never hear those words. You don't.

 [00:51:34.890] - Dori Durbin
And you fought a fight that no mom wants to fight. And you brought your son, you got him through a troubling time that just he's excelling at now. And so it just shows the power of perseverance and the power of mom's love. I'm just really inspired. Thank you, Stephanie.

 [00:51:54.440] - Stephanie Duessing
Well, thank you so much for this opportunity to raise awareness about CVI. It is my personal mission to end the discrimination against people who have it, and it is discrimination. And so I'm really grateful for this and thank you for your kind words. Really, that was just the kindest thing. And I will treasure those words forever.

 [00:52:13.770] - Dori Durbin
You're so welcome. Thank you for just your heart and your time today. 

If you'd like to find out more about Stephanie Duessing and her son Sebastian, as well as CVI, head to our website and I'll also provide other links in the notes below. Talk to you soon. Bye.


About Staphanie's "Eyeless Mind" book
Explanation of an FMRI
About CVI: An Explanation
About Stephanie's son, Steven
Different manifestations of blindness
CVI's surprising frequency
How they discovered Steven's CVI
Frustrations of CVI diagnosis
"Eyeless Mind" book reading
Steven's life now with CVI
Helping kids understand blindness
How to reach Stephanie and get her book