They told me that stress was probably the cause and that I should see a psychologist. They did, however, want to conduct another test at Bartiméus. It took two and a half months for the referral to be finalized. Assuming that I was experiencing stress, I took it very easy during those months. I hoped that this would help my vision return, but nothing changed at all.
After 2.5 months, I underwent testing at Bartiméus. A multifocal ERG examination revealed that my retina was severely damaged in the areas where I couldn’t see anything. I was referred back to the hospital, where this time I was assigned a retina specialist. The specialist explained that this type of spontaneous retinal damage is extremely rare at such a young age. It was also immediately clear to the specialist that nothing could be done about it and that, as a result, my vision would never return. That was incredibly difficult and sad to hear. At the same time, I was very relieved that it turned out not to be caused by stress. But I was also very angry that I had been led to believe that it was.
It’s hard to explain what you can’t see
After my diagnosis, people often asked me what exactly I “couldn’t” see. I find it hard to explain that clearly. Although I was able to see everything for 25 years, I can hardly imagine what that was like anymore. My retina is damaged in a large circle right in the center of my field of vision, with only the center and a small portion to the left remaining intact. Another member of the OOG in OOG Association beautifully described how my vision is like a puzzle with a large section of the pieces removed from the center. Because I have a retinal condition, what I can’t see changes depending on the amount of natural light around me. In bright natural light, I see nothing but static, like on old televisions, with flickering pixels and flashes of light. This static can be very distracting, which is why I wear sunglasses as much as possible when I’m outside. With little or no natural light, I can see contrast in the affected area, but no color. So I can tell there’s something there, but not exactly what shape it is or what color it is. Everything has a lilac tint. Although this is, of course, incredibly annoying, I do find it quite special that I can see the world so literally in a way that almost no one else can.
Focus on the mental aspect
Another thing I found particularly difficult about losing my vision was that I had absolutely no expectation of going through something like this at the age of twenty-five. What happened to me was very traumatic, will have an impact for the rest of my life, and happened purely by chance. I was very angry and sad about it for quite some time. I also found it difficult that, in general, little attention is paid to the grieving process following a loss of health. Coming to terms with the fact that I’ll be visually impaired in one eye for the rest of my life was a difficult process, and at times, very lonely. It’s wonderful that there are organizations where people in similar situations can connect, such as “Oog in Oog.” However, patients often have to seek these out on their own, and that requires a lot of assertiveness. It would be great if hospitals paid more attention to the mental aspect of chronic visual impairments.
Adapting to a New Reality
It’s now been over two years, and I’ve come through much of this. When I was right in the thick of it, I couldn’t imagine it, but in the end, I was able to adapt mentally and physically to the new situation. That’s also what I’d like to tell anyone experiencing any form of vision loss: ultimately, everyone is flexible enough to adapt to the new reality. This does take time and a lot of support—from friends and family, but also from people in the same situation. And I wish that for everyone.”
