A few days later, at the Retinoblastoma Center in Amsterdam, the eye is removed and the first round of chemotherapy begins. But the other eye also turns out to be affected. For now, this eye is left intact. Rosaly undergoes several treatments under general anesthesia. Until she is three years old, she can still see a little with that eye. After that, her vision is completely lost. When she is five years old, the decision is made to remove this eye as well, followed by another round of chemotherapy. Since then, Rosaly has been wearing two ocular prostheses.
Rosaly (22 years old) can’t really remember ever being able to see. “I have a vague memory of a little moon with colors. That little moon hung above my bed. But other than that, not really.” She does, however, remember clearly what the days in the hospital were like. “The long wait—that didn’t feel good. My parents had explained to me in simple terms what was going on. I accepted it. The hospital visits were just part of it. And getting a new bead added to my ‘Kanjer’ necklace every time—I’ll never forget that either. Those are the good memories from that time.”
Rosaly has been seeing ocularist Frédérique Bak in The Hague ever since she was a baby. “When you’re little, you get a new prosthesis very often. As a little kid, I didn’t really like having it put on and taken off. You also have to keep getting used to the new size of the prosthesis. But luckily, I’ve never had any major problems, like infections. Now that I’m older, the visits to Frédérique are much easier. My mom always comes with me. She checks to see if the prostheses look good. And I check to see if they fit comfortably.”
Elementary School
Rosaly attended a regular elementary school in her village. An itinerant educational specialist from Visio provided support to Rosaly and her teachers. She began learning Braille as early as second grade so that she could keep up in third grade. In fifth grade, Rosaly was given a laptop to work with. “Actually, I wasn’t happy about that at all. I didn’t want to be any different from the other kids in my class. I tried to participate in everything as much as possible in elementary school. For visual activities, like arts and crafts, my teacher and I often came up with alternatives. My classmates were always very helpful.” Rosaly also took part in the end-of-year musical, even though it took some effort. “Normally, a dance is demonstrated once and then you copy it. But my classmates had to practice with me a lot until it went a little more smoothly. I look back on a wonderful time in elementary school. I was lucky. I was never bullied.”
“Being blind takes a lot of energy”
Swimming and Piano
Rosaly started swimming lessons when she was six years old. “I was in a special group with, for example, children with intellectual disabilities and hearing impairments. I really enjoyed swimming. After I earned my swimming certificates, I continued at a swimming club.” She also learned to play the piano as a child—not by reading sheet music, but by ear. “It was all pretty exhausting. I went to bed much earlier than other kids—back then, and actually still do. Being blind just takes a lot of energy.”
Building Self-Confidence
Rosaly attended the HAVO program at VISIO’s special education school in Rotterdam. A taxi picked her up every day at her home in Schipluiden. “That alone was an adventure in itself,” she recalls. “There were times when I was dropped off in Oostvoorne instead of Rotterdam, or when they picked up the wrong child. It took some getting used to high school at first. But I’ve always enjoyed it. VISIO Rotterdam is a small school, so I got to know everyone pretty quickly.”
After high school, Rosaly took a gap year at Loo Erf, a rehabilitation center for the blind and visually impaired. “I went there three days a week to work on a number of personal goals. You’re given a customized program. I worked on my self-confidence there—for example, learning to travel alone on public transportation.”
The lack of accessibility makes me sad
Buddy Jake
That mobility training came in very handy. These days, Rosaly takes public transportation a few times a week to Leiden University of Applied Sciences for her degree in Social Legal Services. But she doesn’t travel alone. For the past year, Jake, her service dog, has been traveling with her. “The first year, I got by on my own with just my cane. But with Jake along, it’s a lot more fun. And I feel safer, because a big dog like that commands respect.” Still, traveling continues to present challenges. “The lack of accessibility in the Netherlands really gets on my nerves. For example, I always have to ask what number the bus is that I’m getting on. And not everyone answers. Even the bus driver sometimes says nothing. I used to not want to be any different from the other kids. I’ve come to accept that now. But that lack of accessibility—it can still really make me sad.”
Incidents like this are also featured on the YouTube channel “Anders Bekeken.” “I started this YouTube channel two years ago with two girls from high school. Claudia, Kim, and I have always stayed in touch. In our conversations, we realized that we often received the same comments and questions from other people. We wanted to do something with this. And that’s how Anders Bekeken came to be. You can now also follow us on Instagram.”
Future
How does Rosaly see her future? “First, I want to find a good internship and finish my studies. And after that, I’d probably like to work with people with disabilities. I’d also like to continue with Anders Bekeken.” She doesn’t see herself living on her own anytime soon. “Of course, it’s incredibly difficult to find a place to live. And on top of that, I already have so many challenges when it comes to my energy levels. If I also have to do the housework and cook after a day at school… Phew… that’s just too much right now. But in the future, I definitely want to have my own little place.”
A Different Perspective
You can follow Anders Bekeken on Instagram and YouTube. They upload a new video every Saturday at 8:30 a.m. Would you like to get in touch with these girls? You can email them at: AndersBekeken.visie@gmail.com
