Q&A
Albie’s CVI Perspective: “I want people to be more open to CVI”
Albie shares what it's like living with CVI, what he does when he gets overwhelmed, and his favorite places, types of movies, and books.
Albie loves sports, listening to podcasts and books about people overcoming challenges, and going to Barnes and Noble. He’s curious and committed to learning from others to support his own personal growth. Albie is a young adult with disabilities, and was just diagnosed with CVI at age 22 thanks to his own advocacy and learning. He always knew using his vision was really difficult and fatiguing.
What’s your lived experience as a person with CVI?
It’s really difficult. Really difficult, especially around New York City. I’m learning to use a white cane now. I can’t see steps at all. I have poor depth perception. I get overwhelmed easily by the clutter. Clutter is a big mess of piles all mixed together, and I can’t find my way. I can’t see anything in the clutter. It’s just a big mess.
When I’m in crowds, I get confused when there are a lot of people. I can’t tell where I am or who is around me. I do know what my parents look like. I can see faces sometimes, but when they’re mixed in with a crowd, they all disappear. I have such a hard time.
I can’t see anything in the clutter. It’s just a big mess.
It’s hard to make eye contact. People who don’t know I have CVI say to me: “Look at me, look at me. I’m talking to you. Do you hear?” I say to them, “it’s hard for me, but I’m working on it.”
Escalators are really difficult for me. I can’t tell where the step is, I get really nervous and I have an anxiety attack. Going down is the hardest for me. I have to hold someone’s hand.
What happens when you get overwhelmed? What helps you recover?
Physically, it feels like a meltdown, like an anxiety attack. What helps me find calm is meditation, deep breathing, and telling myself that it’s okay.
Describe your reading journey.
My whole life, I’ve just had to adapt. Reading is really tiring. I get tired easily. I had to tell my teachers no more, I couldn’t; I needed to take over and listen to the book. I really like listening to books. Right now, I’m still in school, and I use a clear red strip to help me read line by line. I like when things, my school materials are at eye level. I need to get close to it. But my teachers are just starting to learn about CVI, they don’t know much about it. So it’s hard, it’s really hard.
What about math?
Math is really hard for me—the numbers, just too many numbers. It’s very, very difficult. My mom believes I also have dyscalculia because numbers and math just don’t make sense to me. It helps to use real objects when I’m learning math, like real money; I can count and manipulate and think about the math when I have real objects.
What’s it like going to new places?
When I go to a new place, first I look at every exit, and then I map the place around these exits. But I don’t like movie theaters. I can’t tell if someone is coming toward me. I look at all the exits, but I can’t map the space. I can’t tell where people are or where they’re going.
I hate parades. They are very loud and hurt my ears. I can’t really tell where to go. I can’t tell where the noise is coming from.
When I go to a new place, first I look at every exit, and then I map the place around these exits.
Do you have any favorite places you go to often?
I like to go to the same places over and over again. Barnes and Noble is my favorite place. It’s quiet, and it stays the same. When I go to Barnes and Noble, I have to go to a certain section. It’s the way my brain mapped this place. My brain tells me to go to this section. If I don’t automatically go to this section, I get confused and lose my way.
Do you like watching movies?
I like watching movies, well just some movies. I like sports movies. I can understand them, and I get what’s going on because I know and love sports. I can use what I know about sports, and my memory, to help me watch sports movies. In other movies, I have to ask my mom what’s going on.
Are you able to see fast motion?
No. I can’t see moving cars. I don’t cross the street without someone because I can’t tell if the car is moving and I can’t tell the speed of the car. I can notice that the car is there, the object itself, but I can’t see it moving. So I have to wait until it comes past me. I can’t see balls coming at me. I only notice the ball when I feel myself flinch when the ball is really close to me.
I can’t track a ball coming toward me, but I can track the football going toward a player and the players moving on the field while watching the NFL.
I don’t cross the street without someone because I can’t tell if the car is moving and I can’t tell the speed of the car.
What do you love to do?
I like to watch sports. My favorite teams are the Giants, Knicks, Yankees, and Rangers. I like to listen to podcasts—some of my favorites are Brene Brown and spiritual podcasts. I love Oprah Winfrey because she’s inspiring and great to listen to. I like to listen to self-help books, stories about Paralympians, veterans who got injured, and other people with disabilities who have overcome so much.
I have a rare genetic syndrome called Pseudohypoparathyroidism (PTH) that affects calcium in my bones. I have short stature and other complications. So I have a lot of health issues in addition to cerebral palsy and CVI. I have a lot of stuff. I try to stay positive. Some days are hard, but I just try to stay positive and remind myself that things will work out. Listening to these books and podcast help remind me that I can get through my challenges.
What is visual fatigue like for you?
When I’m tired, I get really drained out. After school, I am so tired. Sometimes after my reading class, I just want to end my day; I can’t do anymore. My brain, my vision is shot. My vision gets blurry when I’m really tired. I get headaches a lot. When I get really bad headaches, I just call it a night. Sometimes at dinner time, I just need to call it a night. I’m just so tired physically and mentally.
Sometimes at dinner time, I just need to call it a night. I’m just so tired physically and mentally.
What do you want to do and be?
I would like to work with and help people with disabilities and possibly be a motivational speaker. One of my dreams is to do a Ted Talk.
What do you want the world to know about CVI?
I want people to be more open to CVI. I want people to know that there’s no cure, but there are some methods and strategies that help people with CVI.
