Diary November 2004



I felt a bit overwhelmed today, too many different people coming and going, open doors, cold draughts, noise and a lot of dust. I’m fed up with all this construction work. Moreover, today we had our first real setback: we had a faulty water main, meaning the whole wall will have to be demolished again (it turned out not to be too bad, though). I would like nothing more than for them to all get out of my house. This is the first time I’ve felt that way, because overall they’ve done a very good job. Another week and things’ll quiet down again.

I don’t do much, I only observed during the past week. Ward is in the middle of his midterms right now, so his work environment is less than ideal at the moment. Moreover, Hein is planning on celebrating his birthday this week and making the house presentable is going to be an awful process (although it did give us the motivation to clean up. Though the help of some other people, we have a liveable house again).


I’d decided not to let the hype about ALS therapy in China get to me. I formulated a few objective criteria, based on real palpable improvements. No “I feel more energetic” or “my neck feels stronger”, like the things the patient in China had documented thus far. I wanted to know about changes to his body weight, the amount of spasms he had and improvements to his lung capacity. In his November 6th diary entry, he confirmed two out of three, only his breathing hadn’t improved. Add to that the fact that a few of my long-time correspondents have decided to go to China too (it has a one-year wait list). I’m tempted. Should I consider going too? I have to admit, somewhere deep down I’m hoping it’s all bogus, so I don’t have to make the choice for myself. And that makes me feel guilty. Do I want ALS to be curable? Yes, of course, but I want it to be curable back home, backed by solid evidence, without a waitlist for therapy in China. That’s why I’m looking for any evidence that may disprove the merits of Chinese therapy. China’s reputation in the medical world is dubious as it is, but I’m still full of doubt.


Of course, we’re heavily invested in the news about the assassination of Theo van Gogh [a Dutch director who made a few controversial films about Islam who was murdered by a muslim extremist on November 4th, 2004. -Ed.] and the nationwide discussions following it. Ward has exams and goes to a primarily white school, so it hasn’t really come up in his class. Floor, however, goes to a multicultural school (30% of students there are immigrants) and the assassinations sparked some very real discussions there. Before, she didn’t really like it there, but now that there was a lot of open discussion between students of various backgrounds and creeds, her opinion has changed. She even told me: “I’m actually kinda proud of our school.”


It turned out that Ward hadn’t done well during his tests. He thought he’d studied enough and even while he was taking his tests, he felt optimistic. It all became too much for him and after receiving his umpteenth disappointing grade, he burst into tears and locked himself in his room. I had him called downstairs, but after only showing his face for a second, he ran upstairs again. I felt so powerless then. I can’t do anything to console him and I can’t make things better. I’m as upset as he is. We’d already agreed to have Ward moved to a class with a dedicated tutor. I would love to get up and take care of that right away, but I can’t. So I tried to get Hein to do it, but he was too tired. If only I could be of any help.

Bad teeth

I finally had a dentist’s appointment on Tuesday, where we made the shocking revelation that the teeth next to the hole where my broken tooth used to be are crumbling as well. At this rate, I won’t have any teeth left soon. I look homeless. The dentists is going to use the aforementioned teeth to put in a bridge. If that doesn’t work, I’ll get crowns. We made a one-hour appointment for that. I hope everything works out.

It’s done

Wednesday, November 24th marks the completion of the last big construction task; putting the floor in the hallway. All that’s left now are some minor errands. However, we were disappointed at how badly we stuck to the plan. Hein is at the end of his rope, he’s in a lot of pain and very irritable, having been monomaniacally concentrated on construction. He barely had time for the kids. I’m not looking forward to the final task: sanding the hardwood floor. Once again, we’ll have to take every single piece of furniture out of the room, we’ll have to be out of the house again and it’ll put even more strain on Hein. It’s planned for the first week of January, but I’m trying to get Hein to postpone it. I want some peace and quiet first.

Selective perception

There’s a psychological principle called ‘selective perception’: people are more likely to internalise the things that they want to believe. The same goes for stem cell therapy in China. I read an article from a doctor who wrote that the effects of stem cells are just temporary, because the cells that are injected during therapy die off eventually. I read that two people have died in China after getting treatments. I also read that, although patients have to wait for one year, enlisting requires a 7500 euro payment upfront. I read that Ardi’s movement has improved, but his breathing has only gotten worse. He has to fight for air, has difficulty talking and has had pneumonia. So I’m wondering what all of the people who are booking their flights to China have been reading. As far as I know, there hasn’t been a single piece of positive news about stem cell treatment after those initial two to three months. Is it blind faith, hope or just pure desperation that’s driving them to China? Or have they read something I haven’t?


Another 50th birthday party. I have mixed feelings. I like being around people, but the amount of people who talked to me or, more accurately, talked at me, is small. It always makes me feel so alone. I admire the people who actually came over for a serious chat. Most of them just waved at me or gave me a kiss on the cheek. I’m socially handicapped. At ten o’clock I left, feeling emotional. Luckily, one of the partygoers came to talk to me and Marjolein sent me an email reflecting on the party. That way, I felt at least kind of involved.