17-year-old girl
I will soon celebrate my 18th birthday. I was invited to Datteln. I turned twelve there. The doctor explained to us that pain is remembered in the brain. In this way you always expect pain and you live in fear. This interested me a lot.
I’ve had bad pain since birth.
Now I’m supposed to show on a smiley-Motzy scale how badly my blisters hurt. I can’t speak because I am deaf.
For me pain has been normal since I was small, also the especially bad kind that goes with taking bandages off open blisters, with bathing and bandaging anew. Usual, but hellish!
Every evening black fear came, also for my parents and siblings. For every day my whole body bandage has to be newly done, my whole life long. The big, open, bleeding blisters are especially on my back. If they are inflamed or want to heal, they itch terribly. Only my head and hands are free to the air.
My dad never wanted other people to see my blisters or my pain. I never had kids over to play or make nonsense. So I’ve always been happy whenever someone has been friendly to me. I looked at them happily. My pain was always a secret.
I like to wear nice fashionable clothes. I cover my awful skin with them and hide my blisters that are everywhere. New ones come daily. The epidermolysis bullosa is getting worse, everyone can see it on my hands.
Once before my twelfth birthday the doctor from Datteln came to our home in Krefeld and watched as I was bathed and bandaged. Then I was invited with my mom to the Children’s Pain Clinic in Datteln for two weeks. Since then I take pain medication for day time and extra strong ones for bandaging.
How cool and exciting it was all of a sudden! I wanted to explain: I felt so good! Because I don’t have words or a voice, I painted it. My grandma likes to help me explain, she understands my gestures. She said to my picture: “Yes, as beautiful as Christmas!” For I painted a Christmas tree with a whole lot of golden balls and a house that shone from every crack, window and door, yes, even from the roof and from the cellar.
Since then I can play, travel, learn, visit, ride a bike around the lake, fool around with my younger brother, argue with my big sister, help my mom. Fear is gone, it almost never comes anymore; I reflect a lot.
Because I always had such bad pain, I often terrorized my family. They had to do everything that I wanted so I would be happy. I can still do that! But now I prefer to do other things that I enjoy. My dad always helps me. My mom is good at bandaging. My siblings find me nicer now. Now my skin doesn’t feel so angry, sometimes even good. I like it when Grandma dribbles her fingers lightly over my back. It’s like music that I can feel.
I have dictated my story to my Grandma with gestures. I can write by myself, but not such a long story.
Warm regards, your Edanur