Image of Nai standing on the peak of a mountain while hiking, white cane in hand, soaking up the sun on a windy day. Text at bottom left corner of image reads:
Q&A

Nai’s CVI Perspective: “You’re seeing but you’re not”

Nai shares their experience growing up not knowing they had CVI, figuring out how to pass as sighted, and what happened when their CVI and visual impairment was finally seen.

Nai is the creator of The CVI Perspective, a CVIer (Nai’s term), and works for the National DeafBlind Equipment Distribution Program. Nai spoke with Rachel Bennett, Assistant Director of CVI Now, about their story of what it took to pass as sighted when no one understood CVI or allowed them to be visually impaired, how they came to find the confidence to accept their disability and whole self, and be part of the change they want to see in the CVI community. This is the first article of a three-part series about Nai’s CVI perspective.

Read Part 1 of the interview below and/or listen to the uncut audio version. Get ready for a powerful and truth-telling story.

Tell me your story, wherever you want to start.

I was born three months premature; I spent a year in the incubator. And that was in Russia. I was adopted from Russia at age 3 1/2. I had ocular conditions that went undiagnosed until I was 12. When I switched schools, I failed the vision screening, so they required me to get an eye exam. That’s when the eye doctor realized I had 400/20 in the better eye. My ocular issues were eventually addressed by age 12. And that’s when I began what I would consider the first part of the CVI years. I was in this window where I had near-perfect acuity and technically a full visual field. So, by ocular definitions I was typical, but I was still struggling with my brain trying to understand everything. That continued for a while and then I had further brain injuries from severe physical abuse. My CVI just got worse with every incident. 

So, here I am today. I work for the National DeafBlind Equipment Distribution Program. It’s a federal program, providing equipment and training to DeafBlind people. We get them any assistive technology (AT) they need and then provide training in their preferred language until they’re comfortable using their devices. I love doing this job. I’ve taught AT to all ages; my youngest client was five and my oldest was 95. Most of my clients have other disabilities. Some have diagnosed CVI and a certain number have what I suspect is probably CVI, just from noticing the patterns, knowing CVIers, and seeing the telltale signs. 

When you were younger, how did you make sense of your world?

During the ocular blind years, my vision was a soup of colors. So, I could see colors well, especially for big things like the blue sky and a field of clean grass on the ground. But I couldn’t see any sort of details. I could see if somebody walked up to me as their silhouette if they got close enough. Bright colors stood out. If you have vegetable soup you might notice a bit of carrot and then a bit of potato, but they all sort of blend together at the same time. 

After my ocular issues were corrected, it was like… how do I describe this? I’ve spent so much time aching over the right metaphor to get it out in words. It was like a cacophony of noise coming at me all the time. I knew the data was there but it was still very confusing. I felt like I was being punched in my face by things. I felt like I was constantly in the game of optical illusions. For example, I would think something was a hole and then I would step forward and realize, oh that’s a shadow. So that’s kind of like CVI, where you’re seeing but you’re not. It’s this paradox, you’re kind of in this in-between, undefined place. It’s so hard to put it in words.

This is your vision… it’s what you’ve always known. 

Yeah, I know. Definitely things like depth perception and all that was tough. I had strabismus surgery and it changed my alignment, unfortunately, it didn’t correct things because I had strabismus in three directions. So, I had exotropia (my eyes wandering outwards), hypertropia where my right eye was above my left eye, and cyclotropia (eyes tilted inwards towards my nose). I had three directions going on and different types of double vision—things were doubled side by side, one above the other, and then they were tilted. And that was like all the time and I couldn’t turn that off. Trying to navigate the three types of double vision was terrifying. I remember I was in the car with my cousin once, and we were in slow-moving traffic inching along. But to me, it looked like she crashed into another car. I remember freaking out because I really thought we were going to die in a car. And then it was like, “Oh no, that’s just my double vision lying to me again.” It was just a constant world where I couldn’t trust anything I was seeing. I didn’t know what’s real. I would completely miss things coming at me. I got hit in the face with the ball so many times in school.

How did you navigate safely?

I learned the techniques to avoid that because nobody understood I was still visually impaired. I would stay right next to the wall. I learned to watch out for the bar that was in the middle of the doorway because I had run into that so many times. I was very good at picking up and learning quickly to avoid obstacles like that. 

I was so heavily conditioned into passing as sighted, so I got really good at learning quickly from things and then doing other compensation strategies to avoid falls.

If I was going up or downstairs, I just knew I had to close my eyes and don’t even try to look at them. I learned how to do things that would avoid obstacles as much as possible. But I still fell, I still had times where something in the environment changed. I remember some embarrassing incidents. I was at a restaurant with my parents and there was some door there that I completely didn’t see and I just smacked right into it. And everybody thought, “Oh you’re just not paying attention, you’re so stupid.” People just didn’t understand that I still had a very real visual impairment. 

There was a lot of social pressure for me to hide the signs and the symptoms of my CVI and to find other workarounds to pass as sighted. I became a master of passing for sighted. For example, I learned how to balance people’s words in my ears, so they would think I’m making eye contact. I learned how to fake look at things, even though I wasn’t actually looking at them. I just learned how to aim my head at the thing and make it look like I was looking at things even though my brain wasn’t actually looking at the thing. It was a world of basically having to pass as sighted because there was no room, space, or allowance for me to just be visually impaired.

I became a master of passing for sighted.

Nobody understood CVI and nobody understood that I had CVI. They just thought that with corrected acuity and visual field, your eyeballs and your sight are good. Nobody understood that sensory deprivation alone can cause CVI. Nobody understood that malnourishment in the orphanage, like having no lipids in my diet, could have really affected my brain tissue in a certain way—all these layers that people just didn’t know to consider.

I would get in so much trouble in school for not making eye contact when I was trying to follow directions. That’s a very big thing and that’s something that even having strabismus doesn’t necessarily explain, so it was still the other layer that was dismissed by the vision therapy. The ophthalmologists, optometrists, and vision therapists just didn’t know about it and they didn’t consider it. 

That ocular piece overshadowed everything else. At that time, I didn’t have a clear sign on an MRI. The medical system understands CVI better when it’s coupled with another brain injury. When there’s a brain bleed, traumatic birth, or a gross anatomical abnormality. But people don’t understand CVI when the MRI doesn’t show anything. There can be issues on a microscopic level and the very way the neurons are firing. 

You know my brain wired itself around not having ocular input. After my ocular issues were corrected, I saw color best because that’s the thing I saw the best before. All my neurology wired around my visual reality until I was 12—wired around not having good acuity and depending more on my other senses. And people didn’t understand that nuance and that complexity at the time, but now people are finally starting to get it. 

I still pinch myself, like oh my god, people are really starting to get CVI. It’s so amazing and very emotional because my whole life is finally starting to be explained. It’s hard to be living that reality, the time before medicine found an explanation for my visual reality, it’s hard to be in that window. A lot of current CVI adults right now have lived their lives before blind rehab and all these fields have really started to understand CVI and started accepting it. 

 I still pinch myself, like oh my god, people are really starting to get CVI. It’s so amazing and very emotional because my whole life is finally starting to be explained.

We still have ways to go. There’s a lot of people who still don’t know about CVI or are open to the idea of CVI yet. We still have ways to go but at least there’s a solid foundation of progress so far that we can work with now that just was not there when I was a child. They didn’t understand the more nuanced complex multi-factor type histories for the CVIers that are still trying to push to be better understood. And we are learning more and more about the genetic conditions and variants that are correlated with CVI. I only got diagnosed with my genetic condition when I was 27. I went through my whole childhood without anybody knowing about that because I was adopted. I had no family history. It’s a very rare mutation and nobody was going to look for that. Last year I read a paper about how people with my genetic condition—Ehlers Danlos Syndromes (EDS)—have a higher rate of CVI and Balint’s Syndrome (a type of CVI). So it’s possible, even without the orphanage and all the abuse, I might still have CVI anyway. 

When were you diagnosed with CVI?

I was diagnosed with a brain injury when I got a really bad concussion. I was walking down the street and there was a pile of trash that I just did not see. I tripped on it and was thrusted headfirst into a brick wall. I went to the ER. I had a significant decrease in my visual functioning. That’s when they identified a bleed in the back of my brain. So, I had a cause and an etiology that was accepted in the framework of brain injury and brain-based visual impairment. From that point on my lived experience had credibility within the framework of our medical system and current understanding of CVI. That was a game-changer. I finally had doctors on my side supporting me and understanding me. 

From that point on finally my lived experience had credibility within the framework of our medical system and current understanding of CVI.

Did you get more support after the CVI diagnosis?

Yes, I got connected with blind rehab services and I was finally able to start learning how to use a cane, Braille, and develop independent living skills. I met the definition of legal blindness. Becoming more blind actually made life easier because I finally had the support I needed that I really should have had all along. That was a total life changer because I use those skills to this day. That was the beginning of having actual services and support. 

I finally had accommodations for school. College was the first time I had special accommodations with a disability office. I didn’t have any accommodations in K through 12. Zero. None. It was sink or swim. And when they saw me sink, I was just stupid and lazy to people. There was no explanation for why I did poorly academically, they just assumed that I wasn’t trying and that I didn’t care. People knew that I was quote-unquote smart. So they took smart and me failing academically, and jumped to the conclusion that I just wasn’t trying and I didn’t care. Because I didn’t have a diagnosed disability to explain the difference between my potential and my actual performance. The lack of diagnosis forced me to pass as sighted and that’s why I got really good at finding workarounds.

I didn’t have a diagnosed disability to explain the difference between my potential and my actual performance.

When I met another CVIer for the first time, we talked about that for eight hours straight and we had come up with a lot of the same tips, tricks and strategies. She was a genetic CVIer with a not easily understood etiology either, so she was in that boat where she had no choice but to pass for sighted. She gets my whole life and experience. It was very bittersweet because, on the one hand, it was someone who got it, and then, on the other hand, I’m not the only person who’s had to live through this hell. 

Learn more from Nai at The CVI Perspective. Centering the stories of individuals with CVI is essential in building our CVI community and moving the field forward. Nai wants people who have CVI to feel welcome to email your stories—whatever you want to share to [email protected] And if typing is hard for you, if words are hard for you, Nai is happy to accommodate. 

I want us to have a whole anthology of stories from CVIers, so that we can bring forth the understanding from the inside out.

Nai, The CVI Perpective

Read on to Part 2 of Nai’s incredible, truth-telling interview with CVI Now.