My eye problems began in March 2021. Suddenly, while on the ferry, I could no longer read the “giant letters” on the other side of the Lek River. After visiting the optician in the village, it became clear that I had a macular hole in my right eye. This was followed by my first visit to the Eye Hospital in Rotterdam. After two postponements, I had surgery on May 6, 2021—three days after my granddaughter was born.
Another surgery
Of course, I had hoped and expected that after the surgery I’d quickly be back to my old self and able to get my life back on track. Unfortunately, things turned out differently, and I’m still not there yet. I’ll try to briefly outline what happened.
During the surgery, my vocal cords were damaged while I was being put under anesthesia, and I had to cough because they were irritated. This caused bleeding in my eye, and a second surgery was necessary three days later. Eleven days later, I underwent another surgery because I still had no vision. After the third surgery, I had “some” vague vision, but partly because the gauze behind my eye had been replaced with oil, that vision was minimal.
Of course, I was hoping once again that things would work out this time… but unfortunately, after months of checkups—during which I always remained positive, as described by Marianne de Zwart—the pressure in my eye just wouldn’t go up, and the oil couldn’t be removed from behind it. In my daily life, light bothered me a lot, and my good eye got tired quickly—and that’s still the case.
Meanwhile, the problems with my vocal cords hadn’t been resolved. Through the ENT doctor, I found out that my vocal cords had fused together (laryngeal web). I was put on the waiting list for surgery, but it was during the COVID-19 pandemic, so it was just wait, wait, and wait… In the meantime, I started speech therapy, and I’m still receiving it now.
Although I find it a little strange to say this about myself, I always try to look on the bright side. Amid all the misery, I just want to say that my grandchildren have truly been a ray of hope for me these past few months.
For the fourth time
In November 2021, I finally underwent my fourth eye surgery. This one was to save my eye, not to restore my vision. During this time, there had already been a lot of talk about an ocular prosthesis. Around that time, I discovered the OOG in OOG Association—through a brochure at the Eye Hospital. I got in touch with Huub Scholten, who helped me weigh the pros and cons of an evisceration surgery. In April 2022, my husband and I attended the OOG in OOG Open House. I had some wonderful, informative conversations there, and I felt right at home. I enjoy attending the online meetings—when the topic is relevant to me.
In the end, I was able to keep my own eye, but in June 2022 I did start wearing a shell prosthesis over it. This felt good; it felt as if it gave my eye peace and a sense of security. I was no longer bothered by light, and my eye stayed open. But just when I thought, “I’m there…,” it turned out that wasn’t the case. Wearing the prosthesis had damaged my cornea, leading to weeks of trips to the Eye Hospital and, ultimately, a fifth eye surgery in September 2022. This time, I had a mucosal graft so that I could start wearing a prosthesis again.
In the meantime, I had surgery on my vocal cords in February. For me, not being able to talk for a whole week is soooo hard. But I managed. Unfortunately, my voice still isn’t what it used to be, and it’s unclear whether it will ever get any better.
The next step will be to start wearing an ocular prosthesis again, and this time one that’s customized for me. I still have some questions about this as well, including: should I choose glass or plastic? And I’m finding information about this at the OOG in OOG Association.
Future
I still feel uncertain about my future. Work has always been my biggest passion, but because of all the problems I’ve been facing, I’m unfortunately only working a few hours a week as part of an occupational therapy program. Right now, it’s still unclear whether I’ll be able to keep my job. That feels like a failure! I really need to rediscover what’s achievable for me and try not to set the bar too high. I still find it difficult to live in the here and now. I have a hard time letting go of the past, but that’s necessary to move forward. I sometimes say, “I miss the carefree, cheerful version of myself.”
As you can see, I’m still in the middle of a process of coming to terms with things, accepting them, and finding a new way forward. Over the past two years, we’ve been on vacation in Zeeland and on Texel so we could take lovely walks along the beach. That was good for my fitness and helped take my mind off things. That’s what I hope to do more of. Go for more walks and just get out and do things. For example, I’ve already discovered audiobooks and started taking Qigong (a Chinese movement practice) classes. My main goal is to once again be able to enjoy everything that comes my way “freely” and without worry.
Who knows—maybe we’ll see you at the next meeting of the OOG in OOG Association!
By Marianne de Zwart
