My life is frail, but I want it to be full, I don’t want it to be ordinary, I want it to be extraordinary
The Story of Johann, Patient with
“My life is frail, but I want it to be full, I don’t want it to be ordinary, I want it to be extraordinary and for that I need help. I have someone helping me 24/7.”
Having this disease remains very difficult. Yes, it is unfair, yes it pisses me off but there is nothing we can do about it and it’s there so… My leitmotif is rather to try to appreciate all the richness that it brings.
Having secrets when you are constantly accompanied is not easy, but we try to find ways so that this help that people give me does not become awkward or embarrassing for me or my entourage.
I want to do so many things because I know I’m running out of time. I know that my illness weakens me by the day and that what I can do easily today will become more complicated in 5 or 10 years; so I want to live it all while I can.”