My Life


A whole life has many stories. I'm focusing here on living with the disease. So my story begins with the first symptoms at the end of 2012.

First of all, by deciding to have a child I had also set myself an initial “survival goal”. As the process progressed, intermediate goals as well as updated “personal target values” were born. Below I will list the goals consecutively:

2014

I want to experience Melissa going to school.

I'm convinced I have 5-10 years. My everyday life is geared towards this.

2021

I am convinced that I have 15 years. My everyday life is geared towards this.

2022

I tell myself to reach 20 years. My everyday life is geared towards this.

I want to live at home at least until Melissa comes of age so that I can actively support Melissa.

2023

I want to attend Melissa's wedding. In the back of my mind I see myself becoming a grandpa.