Experience expert and teacher Wilja previously shared how Duane’s Syndrome has affected her life. Because there is little information about it, she is also happy to provide insight into the effect of aging on a body with Duane Syndrome. We hope this will provide insights to other patients and practitioners of this eye disease. Wilja has the most severe variant of Duane you can have: her pupils cannot move horizontally or vertically.
Guest blog by teacher Wilja
Prognosis ‘Duane is not improving or getting worse’ is not entirely correct
At many eye clinics and orthopedic practices I read the following:
“Prognosis: Duane is not improving or getting worse.”
This is true, but people forget that other muscle groups are overloaded. The emotional side of Duane’s Syndrome is also not mentioned. People see something in you, they don’t know what, they don’t ask. As a ‘patient’ you therefore do not know when someone thinks: “hey I see something about you, but what?” These are the difficult moments you will face with Duane. Sometimes it’s better to have something obvious wrong instead of this. I’ve been sighing the latter a lot lately.
In my previous blog you could read how I live with Duane. The last few months we have been really busy taking good care of Duane. He needs more attention in recent months, so that we can continue to function well together. Unfortunately, the way we live at the moment is not going well!
Visio workplace advice
Last May I already indicated at school (I’m a teacher) that my eyes were bothering me more and that I would like a preventive conversation with the company doctor. This meeting then took place and we then decided that Visio (the center of expertise for blind and partially sighted people) would take a look, to make working easier and to see where we could make adjustments.
The conclusion of this research is that there is actually not much that can be adjusted during my work as a teacher. Visio mainly indicated: take your moments of rest, discuss whether you no longer have to walk outside during breaks, discuss whether another teacher can give PE lessons and school trips are too tiring for you.
I have discussed this with the school board and they will see what they can do and how we should adjust this. The company doctor also advised to explain to the team what is going on. What do you see, what don’t you see? Explain the cause, tell Duane’s characteristics, indicate what they can help you with and what are the characteristics and adjustments in your life with Duane?
This was not easy, because I kept the syndrome silent for years, because I could just work with it without any problems. A condition is something that you are a bit ashamed of, you don’t tell about it if it’s not necessary. In the last 2 years, the work has become considerably more difficult due to the Duane, which is why I asked for help for a preventive conversation with the company doctor.
But yes, then you stand in front of your colleagues… and you have to tell them what you have always kept to yourself. You must disclose that now. That was difficult and not nice. Surely it is a place in your life that is very private, you know you have to share it, but you also feel how difficult it is. I really feel more vulnerable now that I’ve told…
This feeling was not unfounded. After the first lesson visit (someone watched in class after I told it) the lesson was evaluated. It was also told what I had not seen and that came in hard. It was said ‘we’re in it to help you’, but after 25 years of attending classes and never noticing anything, my eyesight was suddenly a concern.
Well, that came in very hard and confrontational. My deepest “I” was touched anyway. It took me a week to put that in place and to regain my self-confidence. A photo of my neck has also been taken and it showed that there is more than normal wear and tear. That didn’t surprise me either, because the neck and shoulder have been hurting a lot in recent months. At the end of the day they feel very tired.
When I turn my head, you hear my neck crack. And well, of course I often have to turn my head because my eyes can’t. After a day’s work, my head weighs heavily on my neck and shoulder. The wear cannot be reversed or stopped, but with exercises from the physiotherapist, we try not to let the wear take its course too quickly. Physiotherapy will make adjustments to spare my neck as much as possible. Think of raising the laptop, raising the phone and a good headrest in my chair.
So Duane Syndrome really does have consequences as you get older, but especially for the rest of your body. And so I’m busy keeping the relationship between Duane and myself good. I myself think that I have now had the most difficult moments. It is known at school and with the team. I have to be open about it and together with them I have to try to keep it workable for Duane and myself for the last 5 years until my retirement.
I have another appointment with the company doctor in a few weeks. The hardest thing about those conversations is that I have to articulate very well what I see and feel during my life with Duane. Few people know about this handicap and that is difficult. Well and Duane of course has a different relationship with everyone who lives with Duane…
Do you also notice that a physical disability becomes more difficult for you as you get older?