Linda is (probably) going blind: ‘Despite this uncertainty, I want to work towards my future’

“Because of all this, I’ve basically had five gap years”, says Linda, 23. By ‘all this’, the Health Sciences student is referring to the diagnosis she was given at age 17 and the period of uncertainty that followed. Linda had decided at a young age that she wanted to be a surgeon when she grew up. Once she was diagnosed with an eye disease, that was no longer an option. So she found herself wondering: what am I to do now?

Linda’s family were devastated when Linda received her diagnosis. “It didn’t really sink in until I saw my big, tough, muscular Dad cry when he told my mother the news. Thankfully, my twin brother doesn’t have the hereditary disease, but he did feel guilty about my having to go through this on my own.”

At the same time, the diagnosis caused a lot of pieces to fall into place. “My vision had always been bad at night. When I was very young, I once stood right in front of my Dad at a campsite and said, ‘Daddy, where are you?’ My parents had me examined by a lot of different doctors, but they were always told that everyone is a little night blind to some extent. Due to my tunnel vision, I’ve always had to tilt my head to be able to see properly.”

It remains to be seen how Linda’s retinitis pigmentosa, as this type of disorder is called, will progress. The disease develops differently in everyone, but in a nutshell, it means that the cells in the retina that allow you to perceive light and dark and contrast gradually break down due to inflammation. Some sufferers are able to see things with one eye, while others only see things through a very narrow tunnel. Linda’s doctors expect her to go fully blind. She is already completely blind in the dark.

During the five ‘gap years’, much changed in Linda’s life. She no longer lives in Maastricht but has moved to Gouda to be with her boyfriend Joost. She worked very hard and saved up her earnings for years so as to be able to have a good time in Australia and New Zealand. “Skydiving, scuba-diving near the Grand Barrier Reef, rafting from a seven-metre waterfall, getting a traditional tattoo in New Zealand. I was able to make the very most out of that trip because I worked really hard for years.”

The main change is that Linda is now able to face her future with some optimism. “The inflammation may progress so quickly that I may wake up blind tomorrow morning. During the first few months, I would sometimes wake up in a panic in the middle of the night and immediately switch on the light. I had to find out at once if I was still able to see.”

She is a member of a support group for ‘other young girls’ who have eye diseases. She also receives assistance from the institute for the blind, e.g. with regard to what kind of degree programme to pick. She would like to be a manager – say, in a hospital. Which is why she chose to do a degree in Health Sciences. “Despite this uncertainty, I want to work towards my future.”

It took her a while to get used to studying again, and it often feels strange for her to explain her medical condition to her fellow students. “I generally tell them at once. I may be able to walk into a room without a white cane, only to need it after the lecture, once it’s dark. I always sit at the front of the lecture theatre. People don’t understand how I can be blind one moment but not the next moment. I can’t see their facial expressions, but I can feel them.”

Linda does not like to use her white cane, because she’d prefer to go through life without assistance. However, it was a good thing she used it during Eurekaweek. “During Eurekaweek, I slept on campus, and after the cantus sing-along I had to get back to the campus from Ahoy. The thing is, I didn’t know how the metro worked and how to get there. This girl saw my cane and said to her boyfriend: ‘You go to the party without me. I’ll take her to the campus and join you afterwards.’ It was such an incredibly sweet thing to do. How else would I have got back?”