I work as a support staff member at Jeugdplatform Amsterdam. Together with parents and young people, we form a platform from which we provide the municipality with both solicited and unsolicited advice on everything related to youth services and appropriate education in our city. I really enjoy doing this. I work with a diverse group of young people and parents. Their inspiration makes what could otherwise be rather dull policy work fun and exciting. Outside of work, I enjoy board games, reading, movies, and spending time with my family and dog.
In just a few days
In April 2021, my vision in my right eye deteriorated over the course of a few days. At first, I thought it might be eye strain, a speck of dust, an ocular migraine, or something similar. When I went to see my primary care physician, it was a real shock because there was actually much more going on. With an urgent referral, I was at the eye clinic just one day later.
Other than that, we don’t know
They observed two “healthy” eyes, though one had only 15% vision remaining. Through the eye clinic, I was referred to the neurology department. After a variety of tests, many causes were ruled out, but there was no concrete indication of the cause of the damaged optic nerve. Several courses of medication followed. Unfortunately, these did not help. In June, the diagnosis was: “Vision will not improve any further, and we don’t know what else to do.” Fortunately, no other concerning abnormalities were found, so my healthy eye is not at increased risk. “So what now?” “What happens next?” “What can I do, and what can’t I do anymore?” “What do I need to be aware of?” I had a thousand questions!
It’s perfectly fine to go on living with just one eye
After a lot of Googling, I was lucky enough to stumble upon the OOG in OOG Association’s website. On the site, I immediately found practical tips and stories from people who’d been through the same experience. It was really nice, and I quickly got the feeling, “Yes, I can definitely get by just fine with one eye.” I didn’t hesitate for a moment to join the association. In early August, Maaike gave me a warm welcome, and I received emails with all kinds of informational materials.
A lot of unrest
At the end of August, I completely lost my vision. So I went back to the neurologist, and more scans were done. These scans made it clear that it was likely a meningioma on the optic nerve (Ed.: A meningioma is a growth [a tumor] that develops in the meninges). The AMC was going to investigate further. I have to say that I’m not impressed with the communication from the ophthalmology department at the AMC; it wasn’t clear to me when which results were being discussed or when a potential treatment plan would be available. For me, those were three dreadful months filled with anxiety and uncertainty.
Clarity at Last
Finally, in early December, I got a clear answer: my vision probably won’t improve any further. However, it’s important to stop the growth of the meningioma to reduce the pain. In January, I began a 6-week course of radiation therapy. Over the next few years, doctors will monitor whether the growth of the meningioma has been sufficiently halted. All in all, I’m glad to have clarity now.
Practice makes perfect
In the meantime, I’ve started putting all the tips I received from the OOG in OOG Association into practice. I’m taking on the challenge of walking up and down the stairs safely again, putting up with the mess while cooking, doing my best to do everything a little more slowly, and—thanks to the tips—I’m enjoying the things that do go well. Practice makes perfect! The online Oogcontact meetings also help with this. Seeing how others cope, learning about the options available, sharing experiences, and having someone to listen really help.
This is my story. I’m glad to be a member of the OOG in OOG Association now, and I hope to get to know many people and hear about their experiences. Who knows—maybe I can help others, too. If you have any questions for me or just want to get in touch—you’re welcome! Send an email to info@ver-ooginoog.nl. I’ll get back to you.
