Living with CVI
Dagbjört Andrésdóttir is a brilliant and talented woman living in Iceland. She is an opera singer, currently studies music at the graduate level, and has a lead role in an upcoming opera. Dagbjört also has CVI. But she wasn’t diagnosed with CVI until 2018. Not until she was 26 years old. Dagbjört has become an advocate for CVI in Iceland and is incredibly supportive of CVI families worldwide.
Shannon Ryan is a strong, brilliant, and dynamic woman! Shannon is a CVI mom to her 11-year-old son, River. She is active in the CVI community and is good friends with Dagbjört.
Shannon interviewed Dagbjört using questions submitted from other CVI families. The interview was live on the CVI tele-support call hosted by the New York Lighthouse Guild.
Shannon: Dagbjört, it’s always a pleasure to talk with you. I hope that someday, all of you get the chance to meet this amazing woman who has been so inspiring to me and so generous with her time. You’re a beautiful person inside and out, and it's thrilling to be on here with you and get to share you, and just knowing that there is someone out there with CVI who is so successful and can help us understand what things are like for our kids is huge. Let’s jump right into questions.
Shannon: What has helped you the most with using your vision and coping with your CVI?
Dagbjört: Given the circumstances of me not knowing that I had CVI until 2018, I didn't get to think about it until very recently. As I started to think back in time, the only thing that I can pinpoint is that rest helps me.
Shannon: Do you know the cause of your CVI?
Dagbjört: So, in my case, my CVI is most likely caused by Periventricular Leukomalacia (PVL), white matter damage in the brain that occurred by my two months premature birth. Apart from CVI, which is the biggest problem today, I have limited movement ability in my hands and feet, especially on my left side. I suffered from epilepsy as a baby, which popped up again when I was 16. I sometimes wonder if the seizures have had a negative impact on my CVI, but I don't know. However, I haven't had a seizure for several years now. Due to my limited motor skills, I sometimes have painful spasms in my body. Also, I have a severe migraine disorder. I've been told it could be because of the brain damage or the extreme energy I have to use when I look at things.
Shannon: One thing I always wonder about, especially with you, is the importance of forming neural pathways by being active and engaged in our world. Dr. Lotfi Merabet, a clinician-scientist, speaks about this a lot. Things like music, exercise, karate, and learning a new language help form neural pathways to support connectivity and brain development. I think about how you are so fluent in music, and you speak so many different languages, which probably made a big difference for you.
Dagbjört: Music changed my life. Music saved my life. Music is my vision.
Shannon: As an opera singer, explain more about how you learn and access music.
Dagbjört: Due to my CVI, I cannot read sheet music. There is too much visual clutter and complexity on the page—all the lines, notes, and other symbols make it very difficult to process visually. I am not able to read sheet music efficiently by looking. So, I have to study everything by ear and tapping the rhythms. I listen to recordings. My pianist creates two recordings for me: one is my part and the other is the accompaniment. When I learn new songs or roles, I use YouTube or Spotify. For the opera I am playing the lead role in, I listened to the entire score on Spotify a bazillion times. And apart from learning my solos and parts, I have to learn everyone else's solos, so I know what to do at every second in the show. I have my music in my ears at least one to five times a day. I sometimes look at the lyrics simultaneously, but my vision partly shuts down if I'm looking and listening at something at the same time. So I do my best. Listening with the eyes closed and good quality headsets, recording lessons, and replaying at home is a good way to learn.
Shannon: I'm always struck by how people with CVI have to work so much harder at doing everything. And everything's got to be so exhausting sometimes, so I applaud you!
Shannon: CVI parents talk a lot about visual fatigue in their child with CVI. Can you explain what visual fatigue is like for you? And what helps you?
Dagbjört: When I’m rested and happy, I see clearly except for the visual field loss. My acuity is fine. But, when I have visual fatigue, it’s like looking through a straw. Usually, when I’m not fatigued it’s like looking through an empty toilet paper roll. (I can only speak about my experience, this can be different for others with CVI). I have an extremely limited visual field. It gets all fuzzy. I’m also not able to recognize what I was just looking at. Touch helps me recognize it again. I get almost blind when I'm tired. I suffer from severe migraines, dizziness, stomach pain sometimes, when visually fatigued. What’s helpful is sleep, sleep, sleep. If it’s impossible to get the sleep I need, I can get a boost from drinking water, sports drinks, and soda, eating small amounts of food a lot throughout the day, plus painkillers.
Shannon and Dagbjört in Iceland a few years ago!
New environments and safe navigation
Shannon: What are new environments like for you? Are going to new places helpful for you to learn how to navigate these unfamiliar environments or just more stressful?
Dagbjört: For me, the more often I'm put in new, uncomfortable environments, the “easier” it gets. But it’s never easy. Not to be misunderstood, it's always felt the hardest thing I ever will do. But it's good for me in the long run. If I know I'll have to get used to new situations very quickly—actually, when you have CVI, getting used to something quickly never happens—I will have to go to the situation in advance multiple times. For rehearsals of my show last year, I had to visit the theater and stage four times, once per week, before it all began. I walked around the stage and learned the entrances. I would encourage individuals with CVI to explore new environments as much as possible. However, if the individual shows signs of anger or sickness, I would suggest asking them if they need to leave the situation. Sometimes it's enough to leave for a couple of minutes. If I have spent a day in a new place, I might often need a nap when I get home. My vision needs time to recover. Also, I will have to relearn places I’ve been to before if I haven’t been there for a long time, for example, school after summer breaks.
Shannon: How does your vision change with clutter and complexity in new places?
Dagbjört: It is tough for me to describe how my vision changes. Imagine that you're looking at something and you have to make a puzzle out of the picture. The puzzle breaks out into parts. You might have to turn some pieces around, and maybe some are missing. Sometimes, if things are extra challenging, I might lose my vision for a couple of minutes. (This is unique to me and could be different for others with CVI.)
Shannon: Tell me about how it’s been using your white cane.
Dagbjört: Navigating steps, sidewalks, patterned surfaces, and patterned carpets is almost impossible for me if I don’t use a cane. Patterned carpets are a nightmare. I’m still learning to trust the cane because I’ve only had it for two years. Before the cane, I used to fall on the bus when the driver started pulling out of the stop before I sat down. Now with the cane, the bus driver gives me enough time to settle in and take a seat.
Shannon: That’s such a huge thing with the cane—it’s a visual indicator to the people around you. River hates to take his cane anywhere.
Dagbjört: I get that. I do, too, sometimes.
Shannon: I want River to know that the cane lets people know to be careful around this kid, you know, watch on the street. Along with the cane, what else helps you get to where you need to go?
Dagbjört: I like to use landmarks. For example, there is a big red house on my walk to school, and when I pass it, I know my school is close. I strongly suggest not to use words like “look” or “see.” And the worst thing you can do is to point out things that you want to show me. It always made me feel frustrated and sad because I never saw things when people pointed at them.
Shannon and her son, River.
Shannon: For some individuals with CVI, faces are difficult to recognize. What’s that like for you?
Dagbjört: I am one of the lucky ones where I’ve never had issues with facial recognition. But during COVID, it has been more challenging because everyone is now wearing masks. I have to rely on listening to people's voices to tell them apart.
Shannon: It's incredible how your ears become so good. I know River quickly finds somebody in a room just by their voice.
Math and reading
Shannon: Tell us about your experience with learning math.
Dagbjört: I have dyscalculia, a condition similar to dyslexia but with numbers. And what I have read is that dyscalculia may be very common among people with CVI. It makes numbers super hard to understand. I never could and still can't write math problems down in the usual books with the squares (graph paper). I would recommend using clear paper instead—no squares or lines. I only know basic math, but what helped the most was if I could count on my fingers or even little Legos or cereals. I was diagnosed with dyscalculia when I was nine. So from that time, I had a special education teacher. When I got into college, my mom persuaded the school to exempt me from all math subjects, so I just took many language subjects instead to finish.
Shannon: That must have been a huge relief. I remember you saying that learning to read wasn’t a big problem for you.
Dagbjört: Growing up, I didn’t know I had CVI, but I remember that I had almost no problems learning how to read. My parents and grandparents read to me at least once per day. My family is also a bunch of language and word nerds, so I have a lot of interest in words and word games. When I read, I need to have a lot of light in the room and have frequent breaks in between, especially when I'm reading school books.
Shannon: You’ve had to fight for yourself and be your own advocate. That’s hard to take something on like that, and you’ve had a lot of setbacks, and you’ve had some good wins. What were some of those wins?
Dagbjört: When I was diagnosed with CVI in 2018, I lacked support from my school. I gathered all the internet info I could find and sent it to them. So I was able to persuade the school to get a longer exam time. After five years of fighting, I was able to get a magnifier in school to use. I still have not persuaded the Musical Exam Observation group (above all the music academies in Iceland) to exempt me from the math requirements because there's a lot of math involved in music. They don't want to let me finish my studies because they say that I see. So it’s tough, and I have to keep figuring out how to explain my needs and show them what I can do.
Shannon: What are some of the fun things you like to do in your spare time?
Dagbjört: I would say my life is pretty much music every single day right now. I do love to read. I like to listen to audiobooks. I like to be in nature. Not so much walking around in nature because that’s hard for me, but sitting somewhere in nature. And I love hanging out with my friends.
Watch Dagbjört perform!
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