I had written a few things about myself before this and how it feels. And then I made a little sketch, and finally I created this painting. There are times I can’t walk because I am in pain. Some people do know about my disease but not everything that it entails. The whole Fabry story, so to speak. I always have to tell people that I have it, and then I have to explain what it is. So therefore I chose this title… yes, you do not see it, but it is there. I study at Sint-Lucas in Boxtel. I’m a creative worker student, which is in creative education. I love to work with my hands and someday I’d love to make horseback riding boots. She likes to do all sorts of crafts and create things. She’s also a bit of the engineer here in the house. So if something needs to be assembled, Eefje is the one who says, “I’ll do it.” Horseback riding, that is her passion. I’ve been riding horses since I was young. When I was six I was allowed to start riding horseback, and I have been jumping for a year now with my pony. I did know that I have Fabry’s disease, so when Eefje was about five years old and Tessa seven, we took them to the hospital to see if the doctors thought they had the disease or not. And yes, unfortunately they both had it. They told us they were carriers.
First, I sketched out the pencil lines, then I added the more detail lines. I chose reddish-pink colors to represent the pain, because I get burning pain in my hands and feet. That’s why you see a bit of variation in the colors. The dark color shows extreme pain, and what is bright is the ordinary pain. It does not always have to be negative if you have something. You can also make something positive, just like my drawing. Hoping means that you always find a way to continue. And hope for me is that you can be together and that you are surrounded by people who are important to you. We think we have a good team the four of us, and we cope together. I try to do as many things as I can and to just persevere. Sometimes when horseback riding I have pain as well, but I try to just remember it’s nice to just be together with your pony. It gives me hope, you just carry on and you can manage the pain. Continue to hope and persevere. If there are times you have pain, take your rest. Find support in your family and friends, and just continue to keep on with love and hope.