Diary June 2004



My coughing has become a recurring problem. I’ve spent another whole night hacking before getting all of the mucus out of my trachea. It wasn’t pleasant, for me nor for my family. I’ll look for some information on tricks that can help me get rid of mucus easier.


Our garden has never been as beautiful as it is right now. Normally, when I’m sitting in the garden I’m constantly coming up with new ways to improve it, but now I feel content just taking it in. It won’t last long, though, because they’re about to start construction on our sunroom. Lieke takes care of the gardening now. I love my garden.


Ward is not great at maths, it turns out. Algebra is especially hard for him, stereometry (who comes up with these names) is easier. I love mathematics. It’s difficult for me to tutor him, I can only explain small things, helping him with his exercises and writing more math problems for him is bearing fruit. I spent an entire weekend like that, helping Ward study for his maths final. Neither of us are particularly patient, but barring a few minor losses of motivation, it went well. We’re very different when it comes to dedication; Ward will take a break after a few hours of studying, while I don’t stop working until I understand the material. The result of our hard work? A 55%.


The blueprints are in. Suddenly, we were faced with loads of decisions. Where do we put the electrical sockets, the lights, the heating, but mostly: which kitchen are we getting? The kitchen turned out to be the big bottleneck of the operation, with delivery being scheduled 8 to 10 weeks from now. The builders’ holiday season isn’t helpful either. Thus, we’re spending entire afternoons visiting kitchen manufacturers, with Hein poring over their booklets. Besides the fact that I’m unable to turn pages, I’m not the type for extensive research. I’m an intuitive consumer, distilled from listening to various sales pitches. It saves time. Once, I did a test where I had to make a decision based on several written sources. I was terrible at it. I prefer listening over reading.


My other faithful help, who has been with me for over three years, is leaving us too. We thought we could hold onto her for a little while longer, which made her departure even more or a blow. I was upset all day. The next day, I worked on finding a replacement. Within just half a day, I had sealed the deal. Long live the internet and email. I got a real kick out of it, although it didn’t take away from how sad I was. It means that, after the holidays, I’ll have to get used to a whole new team. I’ll be unintelligible again. I’ll have to explain everything again. Goodbye, familiarity.

World ALS Day

June 22nd was World ALS Day. Not a lot of people know about its existence. We visited the Valscherm Foundation conference and the ALS Centre, mostly to catch up with acquaintances. That evening, there was an item on TV about Loes Claerhoudt. I’ve been corresponding with Loes for a while now. Her ALS is a lot slower than mine, she’s still able to talk after 5 years and still has some functionality of her hands and legs. She’s had a personal column in a newspaper, in which she writes humorous articles, all of them with undertones of sadness. Other than that, ALS Day didn’t get too much attention. Well, actually… My website did perform really well today, 48 visitors. So maybe some people do know about it?


Like most people, we’ve caught a serious case of orange fever [Being very supportive of Dutch national sports teams, most of which are clad in orange. -Ed.]. This is the first time that the kids have actively participated, putting up orange flags and streamers on the balcony. Our house is the only one in our neighbourhood with orange decorations. Hein found it a bit tacky, but he condoned it. We dressed in the most orange outfits we could find, who doesn’t these days. We ate orange pastries and watched as much football as possible. We cursed our team’s coach, but not too much. In the end, we’re no different than any other Dutchmen. We’re very typical, really.


I didn’t initially plan to go see the musical I’d written, because I didn’t have any kids that would perform in it. Besides, it had been months since I’d written it. But my curiosity got the better of me. I’m glad I went, because I had way more fun than I’d anticipated. This one was even better than last year’s one. I especially loved the performance one girl gave, playing a lovesick braceface. I was still chuckling about it the day after. It’s always fun to see something you’ve put on paper come to live.


Sandra is definitely leaving, two months later than intended, because we couldn’t find a suitable replacement. The day before her official departure, she asked if she could cook something special for us and if her husband Jeroen could come to dinner too. I told her I’d like that. Sandra likes to share, so we knew a lot about Jeroen. Dinner was very nice and cosy. And thus, in a special way, we said goodbye to a very special person.

All the way from Leeuwarden

On Tuesday, a correspondent and friend who was diagnosed with ALS six months ago paid us a visit, all the way from Leeuwarden. I was most impressed. Six hours of travel time, just to see me and confront herself with the realities of advanced ALS. I don’t know if I would have been as brave. Talking over email is a lot easier. In the same vein, one of my old colleagues visits me yearly, all the way from Epen (Limburg), just to be with me for an hour. Bless them.


School ended almost two weeks ago. My carers are a bit miffed about that, because in order to do the laundry they have to pass through the kids’ bedrooms. The kids have been spending a lot of time in and around their beds. After they’re back from camp, we’ll go on holiday in Zeewolde (Flevoland) for two weeks, in a small cottage. I’m glad we’ll be able to stay in the Netherlands, despite the fickle weather. I don’t even want to think about long car rides in a sweltering van. Besides, I wouldn’t say no to a moderate summer.