“My mother had Steinert’s disease, and when I was 22, I was told I also had it. I was 35 when the first crisis happened. I was at work, and at noon I wanted to stand up, but I couldn’t. I panicked completely. After a crisis, my body gets paralysed and I loose all mobility. The only thing that still works is my head. You’re like a baby again. You have to learn how to walk, how to move, and it takes several months. And each time, new muscles die. During that first year, I think I had 6 crises.
After I had to stop working, I didn’t leave my apartment for one year. I was miserable, I was useless. Many people wouldn’t talk to me anymore because I was in a chair, as if it were contagious. But my friends kept telling me to move, to see people, so I started coming to this parc. People here always saw me in a chair, so they weren’t afraid. Since then, I’ve made plenty of friends, and I’m here throughout the summer. I put my cover on the ground, and it’s all perfect.
My husband burnt his life from both ends. He smoked a lot, drank a lot. Oh…! He did everything he could to get sick! During the last years, we didn’t know why, but he had ascites in his legs and stomach. He couldn’t walk or eat. I asked him several time if I should help him to die. But he told me: “No! It’s going to be all right!”. On one hand, I think it’s better that I’m the one left behind, because I keep on living. He would’ve let himself die.
But I have a beautiful life. I was married for 12 years. I was happy. I’m always full of energy, and I’m happy to be alive! I can do many things! Well, I couldn’t go on holidays this year, or else I wouldn’t be here. Travelling is EVERYTHING. He loved the warm weather, so we travelled to many islands. The next place I’d like to go is Guadeloupe! By the way, I’m Jacqueline, but everyone calls me Jack. The plate at the back of my chair, that’s a gift from my husband, because he used to say : “You’re always on the road, so Jack Transport International Routier!”
(Parc Beaulieu | translated from French)
*Click on the blue arrows of the main picture to see the second picture.