I’ve had an eye prosthesis since 11th grade
Anette explains: “Older people often develop cataracts. But cataracts can also be a congenital eye condition. I was already born with cataracts in both eyes. Around the age of three, I had surgery to remove the cataracts. The surgery on my right eye went better than the one on my left eye. The ophthalmologists wanted to try to remove a little more of the cataract. They began with a second surgery on my right eye. During or just after this surgery, too much pressure was applied to my right eye. If too much pressure is applied to an eye, that eye becomes completely damaged, and eventually you can no longer see with it. Because my right eye began to look very different and became increasingly bulging, it was removed when I was eleven, and I have been wearing an ocular prosthesis ever since. My ocular prostheses have always been made by the Haags Kunstogen Laboratorium in The Hague.
Complication
After the complication during the second cataract surgery on my right eye, no second surgery was performed on my left eye. I still find it very unfortunate that the doctors started with a second surgery on the eye with which I could see best at the time. Of course, it would have been better to start with my left eye, which was actually the one with the worst vision.
Eager to learn but far from home
From 1966 to 1979, I attended a boarding school for blind and visually impaired children in Grave, near Nijmegen. After elementary school and two years of MAVO, I went on to complete HAVO and VWO at regular high schools. After that, I studied Dutch in Amsterdam.
Other Disabilities
In addition to poor vision, I also had congenital leg and hip abnormalities that made it difficult for me to walk. Around the age of 26, I was diagnosed with MS. As a result, I initially had much more difficulty walking and soon needed a wheelchair when I was outside the house. These days, I can hardly walk at all and am completely wheelchair-bound both indoors and outdoors. Because of the MS, I’ve become much more prone to fatigue, and since I started having increasing problems with my bladder and bowels, I’ve had two stomas since 2009. I consider those stomas a huge improvement compared to the situation before that.
Active
Because of my fatigue, I was able to work much less than I would have liked. I did, however, have a few tutoring students. I taught Dutch to non-native speakers, both at a school and at my home. In addition, I contributed to linguistic research in the Dutch language program at Vrije Universiteit, where I also studied. I was also active in local politics as a party member and party assistant for GroenLinks in Uithoorn, as well as in various working groups of a Roman Catholic parish in Uithoorn.
I get joy and strength from so many things: I read a lot, love to sing, have conversations, go to comedy shows… Going outside together and getting out and about in my wheelchair. I go on vacation with a group of wheelchair users. I really enjoy that. Every summer, Ton and I take part in a choir week in Castricum. I really enjoy being able to talk to people, and I find it very unfortunate when people are hesitant to approach me because I might look a little strange. Because of both my wheelchair and my visual impairment, I find it a bit difficult to approach people to talk to them. So I’m really happy when they come up to me more often. I can see about 20% out of one eye. Because of that, I often don’t recognize people. I’m happy when people say more than just “hi” as they pass by, so I can recognize them by their voices.
Eye prosthesis
Actually, my ocular prosthesis has worked very well over the years. When I hear at the information sessions organized by the OOG in OOG Association about the kinds of problems you can have with an ocular prosthesis, I realize I’ve really been lucky. In recent years, though, I’ve noticed that my eyelid no longer opens properly over the ocular prosthesis and tends to droop over it. I find that very unfortunate. Still, I’m hesitant to have eyelid surgery because I’m very afraid that it will disrupt the moisture balance around my eye. The ophthalmologist I spoke with about this downplays the problem, but she also says that it’s not always possible to get an eyelid to close properly after an eyelid correction. Although it looks less attractive with an eyelid that’s almost closed, I don’t have any other problems with it right now, and I’d really like to keep it that way. Since I’m dealing with quite a few other health issues, my eye prosthesis isn’t such a big deal to me in the grand scheme of things.
Accustomed to seeing with one eye
I don’t remember being able to see with both eyes for very long, so I’ve actually never known anything other than seeing with one eye. I do understand that it has its limitations. What I see is less wide, less sharp, and doesn’t extend as far. Not being able to perceive depth is very impractical. When I’m out on the street in my electric wheelchair, I can see where the entrances are, but not exactly where the exits are. As a child, I found it very upsetting that there were so many things I couldn’t see. Now I’ve come to accept that I see some things. My boyfriend shows me so many things, and I’m very happy about that.
Personal attention from an ocularist
For all these years, I’ve been going to Axel Franken’s Haags Kunstogen Laboratorium in The Hague for checkups and to have my ocular prosthesis replaced. I’ve always been very satisfied with their service. Over the years, they’ve made beautiful eyes for me and have always been very patient in making sure the ocular prosthesis turns out as well as possible. I’m always impressed by how much care and respect they show toward my eyes. The personal touch is also excellent. I’m always happy to catch up with them again after a year.
Well worth it
I think I’ve been a member of the OOG in OOG Association since 2011, but I’m not entirely sure. I saw a brochure for the association at Axel Franken in The Hague, and it seemed like a good idea to get in touch with them. I appreciated that this association offered a way to get more information about ocular prostheses and everything related to them. In the early days, Tonnie Landman told me a lot about all aspects of ocular prostheses during a few phone calls. Even the terminology alone (ocularists and orbital specialists) was completely new to me. She also sent me a stack of the association’s magazines, which I read with great interest. I also find the open house events enjoyable and interesting.
Coping with Poor Vision
I enjoy talking with others in the same situation, and I also find the information provided by the ophthalmologist and ocularist who are present very valuable. I also enjoyed the workshops. In recent years, due to fatigue, I’ve often left early and missed the workshops or one of them, but it still feels better to participate in part of the day with enough energy than to struggle through the whole day.
Stories from People in Similar Situations
I also think the association’s magazine is really beautiful and interesting. I really like that it includes so many photos from the meet-and-greet days, and I enjoy reading the stories from fellow patients. I think it’s important to know what people are going through in their lives, especially when it comes to living with an ocular prosthesis. I never miss an issue!”
