Diary May 2003


How are you doing?

An annoying and difficult question to answer. People think my illness dictates my whole day, but it doesn’t. In fact, I try to think about it as little as possible and I feel normal for the greater part of my day. I try not to imagine what other people see when they look at me, a woman slumped in a wheelchair who can barely talk and needs constant help. (Photos of myself always shock me.) But within my psyche, my illness plays only a small role. My interests, feelings and routines are still the same I think that’s the way to go: to think about one’s illness as little as possible. My life is as regular as I can make it.


Sometimes I do think about what others see when they look at me. Especially on holiday, when I’m around people constantly, I’m confronted by it. I can’t withdraw and daydream and I can’t stick to my day-to-day schedule. Being confronted with that reality doesn’t make me happy. I don’t contribute to conversations, have to be spoon-fed and be dragged along on every walk. What do they get in return? Where’s the reciprocity that I value so much in relationships? Admiration of my strength and perseverance is not reciprocal. And all Hein does is haul me around. Nope, not much fun to be had with me. I’m boring. I’d rather retreat into my thoughts, my “being”, where I’m normal.

Five years post-diagnosis

Five years ago, the definitive ALS diagnosis was made, while the illness first manifested six years ago. Five years is an achievement in ALS circles. I even have a website that documented those five years. Does that make me happy? Overall, yes. After all, I wasn’t expecting to see my children grow this old. There are plenty of other things in my life that make me happy. Nonetheless, my dependence and constant need for care from Hein is very difficult for me. And not being able to speak properly. But that’s part of the deal, free of charge, part of the diagnosis. Five years. I’m glad.


Sometimes I get mad at Hein. I don’t have many ways to express that anger at my disposal. I can’t walk away, I can’t slam doors, I can’t scream or say nasty things. No, instead I stay quiet and shoot dirty looks. I can keep it up for a while. Of course, I stop when I need him again. I’d need the bathroom or, like Saturday last, I’d want to go to a so-called geranium market (which didn’t have any geraniums, mind you). What else can I do? Nothing. There’s nothing else to it but to bottle up my anger. I act normally. I’ve never been one to stay angry for a long time, but these days I barely have any time to be mad. It’s frustrating, but my own needs are more important than my emotions.


I watched the Eurovision Song Contest with Floor and three of her friends. We turned the TV volume way up and yapped throughout the night. Every odd movement, weird clothing article and facial expression got a laugh, or at least warranted a comment. We graded every performance. Of course, we let the Netherlands win, although the ladies weren’t too thrilled by our contestants’ getups. I agreed. It’s an odd experience, watching TV with a bunch of teenage girls.


On Sunday we went for a walk with a fellow ALS patient, Hannie and her husband, through the dunes in Noordwijkerhout. It must have looked very strange, two paralysed ladies being pushed by their husbands. The most hilarious moments were when we both tried talking at the same time. Hein stepped in, saying that one of us is hard enough to understand, let alone two talking at the same time. We both did our ALS laugh, meaning difficult-to-control guffawing. It’s nice to have someone to relate to once in a while.

The musical

While I finished the musical in record time, actually preparing for it is going to take some time. The roles have been distributed and they went over the text, but that was only a table read. The sets haven’t been made yet, the costumes have yet to be prepared. School isn’t out yet, after all. They’ll be going to camp next week, after which they’ll have four weeks to get the show sorted out. That’s too bad, because a big production like this one is a fun note to end their school year on. Of course, I do have a personal stake in this play succeeding. I’m hoping for the best.