Allow me to introduce myself. My name is Jeanet (1955-2007), married to Hein (1952) and mother to Floor (1988) and Ward (1991). We live in Leiden, the Netherlands, in a house built in the 1930s. I was raised in a household of psychologists, but I have primarily worked as a organisational advisor and project manager at a telecom company. My hobbies are/were: gardening, hiking, going on trips and cycling.
Is that all there is to say about me? No, I don’t think so. Those are my defining characteristics to the outside world. When I got ALS ten years ago, many of these traits diminished. One has to redefine themselves. I am not defined by my possessions, or my actions. One falls back on a basic set of traits: the personal characteristics that make up the essence of you. I have, for instance, my willpower, which allows me to plan out every one of my days. My optimism, allowing me to concentrate on the present and not dwell on the past. On the other hand, there is my impatience, which often gets in the way while I continue to grow more dependent on others. My vanity and pride, which prevent me from going outside without feeling some kind of shame. Despite this, I would describe myself as a happy person. I’m able to handle living with ALS pretty well, largely because of the loving people that surround me.
Another great help is this website and people’s reactions to my story. I never expected putting out anything as personal as a diary. I’m not much of a sharer. I’ve been apprehensive for a long time about making my diary public. Reading the diary of a fellow ALS patient from the US convinced me. A diary can be informative for fellow patients as well as friends; it offers insight into my disease and how I deal with it, but it also shows that life goes on despite ALS. As my ability to speak recedes, the monthly publication of my diary helps fill that void. For me it’s a way to show everyone that I’m still here, that I’m not just a helpless shell, but a person leading a “regular” life.
Below you can see a poem written by Steve Shackel. I consider it my motto.