I was diagnosed with Duchenne muscular dystrophy at the age of 3. My parents were always honest about my disease, but I didn’t really care much about it. As the progression was slow, I gradually began to understand its impact, including the physical restrictions. I’m now severely disabled and have lived much longer than the doctors expected. The loss of opportunities open to me, combined with the fact that I’m still alive, evokes many mixed feelings. I moved into a residential home when I was about 20 years old. This wasn’t easy. I had to get used to being helped by a succession of professionals. Until then, my mother had been my only carer. The move was also difficult for my mum. She had to trust new, unknown, professional caregivers. It was hard for me, too, since I love my mum and I want her to be happy. I have to adjust repeatedly to changing reality. I used to play wheelchair hockey, but I’m not able to do that any more. I cannot go out without help. My ideas and preferences have also changed. Initially, for example, I resisted when the doctors said I needed artificial respiration during the night. I accepted this for night time, but didn’t want a cannula 24 hours a day. With a cannula I would be totally dependent on others. But when eventually I actually needed respiration 24 hours a day, I agreed. It scared me and at that moment I wished I was dead. It was an enormous step, but my feelings changed over the time. Still, it is hard, every time a new problem occurs. I need some time to get adjusted to the changes, and medical specialists sometimes go too fast. The operation of the cannula was planned three weeks after the …