Diary August 2003


Heat wave

I don’t think the recent heat wave in the Netherlands was too bad. We have a cool home and the sun doesn’t hit our garden until the late afternoon. On the hottest part of the day it was 26.5 degrees Celsius, positively refreshing when compared to the temperatures outside. Hein had to take 5 days off in a span of two weeks to counteract my carers’ holidays. We spent a lot of time visiting the tea parlour in our cool local park. Of course, I stayed in the shade. Besides that, we experienced a few days of sea mist, meaning it was nice and cool here while the rest of the Netherlands was melting. No, this wasn’t too bad.

In the chair

I haven’t slept well since I got back from France. That and the sweltering nights made me decide to sleep downstairs, in my chair. I didn’t mind. Hein got his well-deserved night’s rest and it was cathartic for me as well. I kept it up for 12 days, until the side effects reared their heads. Because of the heat and the fact that I’m always in a seated position, I barely secrete any fluids. My feet were swollen and my lower legs were painful, making standing up even harder. I started to get worried about the swelling, but one night of sleep in a bed took care of my problems. The second problem I have is my sleeping posture. I sleep with my head down, which was doable during the first few nights, but after a while I started to feel all kinds of bent and sore. It took hours for me to get my posture back. I felt the need to sleep in my bed again, alternating nights in bed with nights in my chair if need be, to unburden Hein.

Thus far, sleeping in my bed has become a bit easier. I even survived a particularly sweaty night with a party going on next door. Nevertheless, we decided to order a better sleeping chair. Just in case.

Nighttime visits

My sleeping downstairs didn’t go unnoticed. During the first nights I was visited by a mosquito. I don’t mind bug bites much. I’m unable to scratch them, so all I feel is a sting, a bit of an itch and that’s it. No zit. No itching. I strongly recommend not scratching your mosquito bites. But what I do mind is the incessant buzzing. I’ll tell the mosquito: “Get your portion of blood and piss off”. And, to the mosquito’s credit, it did. Other than that there was a highly annoying housefly. Very irritating when you can’t swat them. But the most thrilling experience I had was when I heard a faint tapping on the table. It sounded like a mouse. I threw my weight at the table and heard the thing walking away, but I didn’t hear the thump of it hitting the ground. I opened my eyes to see if the coast was clear. I didn’t see anything at first, but then I spotted a massive spider, no more than 30 centimetres from my face. That was when I decided to call for Hein. The spider was flushed down the toilet. And thus, I was having a lot of adventures for a powerless chair bound ALS patient.

Normal again

Things are mostly back to normal, as far as one can call having a son that has to bike across town to get to school (unlike his sister) normal. Ward is in class 1q of secondary school, meaning there are 12 classes in total, and that’s only a fraction of the total amount of classes in his year. It’s ridiculous. He collected his books this morning and by now he’s started putting bindings on them. His sister showed him how, and has been instrumental in his school supply shopping. Of course, everyone has to know the unspoken rules of secondary school. Floor will start mentoring a class of freshmen this year, along with one of her friends. Last year a huge number of people didn’t pass the year Floor is in. There’s a lot of exciting things happening.


Hein thinks I pay too much attention to little details where my carers are concerned. To me, the small details are the most important ones, while they’re often the most difficult to grasp to the people around me. That’s because I don’t want to explain my reasoning for every minute detail. Example. I’ve found a new way of using my head mouse. I no longer have to lift my head from the headrest, which is easier on my neck. The only thing that’s different is that I need a “lazy” IR dot, one that doesn’t fly off the screen when I try to use the keyboard. So, sometimes I ask for a different dot, while it’s obvious that the one I’m using works too. But Hein and the kids don’t get it. “Why, doesn’t this one work just fine?” So I’m forced to explain. And sometimes I don’t feel like doing that at all. Trust me. I always have a good reason.

Virus attack

Yesterday, my antivirus software intercepted at least fifty emails carrying the Sobig.F virus. It was an email barrage. Every five minutes I received the same infected email message. It took a while to clean the whole mess up.


I’ve often notice that people who have trouble understanding me do better when I’m not talking directly to them. Apparently, the pressure of trying to understand me is stressful enough to make some people freeze completely.

Tennis tournament

Hein partook in his first tennis club tournament. On Saturday evening he played his doubles match. I was there too, as a spectator. It turned out to be quite an event, with live music and a performance by three Caribbean dancers. I wasn’t expecting that. What I did expect was for the wife of Hein’s doubles partner to show up, because I’d feel a bit desolate sitting there all alone. Imagine someone trying to talk to me. And, speak of the devil, an old acquaintance spotted me. Good luck explaining yourself. Luckily, someone called Ward over to act as my interpreter, but the loud music made that nigh impossible. Another man, who was sitting next to me, kept trying to initiate conversation and offering to get me a drink. The he started asking everyone how many blinks meant “yes” and how many meant “no”. I felt very alone then.

Talk show

Every August we watch a talk show called Zomergasten [Summer Guests. Every week, the show’s guest gets to pick a film, which is played after the show ends. -Ed.]. And of course, after this season’s final episode they played the documentary Death on Demand, a documentary about an ALS patient who wants to be euthanized. The documentary offers insight into that most intimate of moments, which garnered outrage abroad. I’d watched the documentary when it came out, which is why I knew what ALS was when I got the diagnosis. The introduction, by Zwagerman, had a few glaring mistakes. ALS isn’t painful and people who have it don’t die an agonizing death by asphyxiation. Granted, your breathing will become more difficult, but usually it’s a slow process where coma sets in before asphyxiation. I couldn’t watch. During the post-documentary discussion they kept bringing up the side of the story, even for personal decisions like this one. In psychology, we call it a cost-benefit analysis. I guess in my case, the benefits still outweigh the cost.