Diary March 2003



It happened without warning. The patient lift suddenly stopped working, right when I was being lifted up. Surprisingly, I managed to stay relatively calm. I surrendered, trusting others to solve the problem for me. Luckily, Sandra remained calm as well. My mother-in-law was visiting and together they helped me down and sat me on the commode. I tried to fight it, because I would have to change seats again if they put me on the commode. And, you guessed it, we got in trouble when they tried to get me back in my wheelchair. They couldn’t get me upright. In fact, I started slipping down. Still, we remained calm. Sandra bravely took charge. We made calls. Hein was in a meeting. Astrid (my other aide) was indisposed. I suggested trying Inge (my previous carer). And sure enough, she was home and got on her bike at once. After ten minutes she lifted me up on her own and saved me from my predicament. My guardian angel. Sandra immediately called the manufacturer, who told her that there’s an emergency button on the lift that immediately puts you down. Too late, but of course I informed my other carers about the button. The manufacturer sent someone that same afternoon to fix it. But my faith in my machinery suffered a heavy blow. Every morning, I ask: “could you make sure the lift is working?”

Medical devices

Humans aren’t made for being dependent on tools. However fantastic they may seem, they’re inherently unreliable. The following is an enumeration of small technological gripes I’ve had over the past few months that I haven’t discussed yet.

As opposed to the four months I was promised, my PEG fell out after only two months. Of course, it happened at midnight. Useless. Luckily we had a backup and Hein, hands sweating, managed to fix it. It was a relatively simple procedure. The problem? The little balloon that keeps my PEG in place in my stomach was slowly deflating. It happens more to some people than to others, depending on stomach acids. Good to know. One and a half months later we measured the air content of the balloon again, only to find that it was almost deflated again. We inflated it ourselves.

One day, the stair lift broke down. We had to wait till the next day for a repairman. Hein and I were forced to sleep downstairs, with Hein on a mattress and me in my chair.

The foldable shower seat has rusted shut for the umpteenth time. We got that model specifically so I wouldn’t slide off while showering. The repairman, with a straight face, told us to not use the seat as much.

And yesterday, my new tooth fell out. It didn’t break, like the dentist predicted, but it fell out, screw included. Of course, the screw gets put through the wringer, especially while I brush my teeth. One week later, the dentist put the tooth and the screw back. “This’ll do for now,” he said.

TV show

An editor for a TV show has read my diary and wanted to interview me. I replied, writing that I’d like to talk about my disease, but I didn’t want to get on TV. Immediately they lost interest. Of course, they were looking for someone with advanced ALS, preferably one who has kids so they can show the effects the disease has on loved ones. Hein didn’t refused because he values our and especially our children’s privacy. I refused because I think I look unpresentable. Besides, the programme is specifically about ALS, and a person is more than just their disease. Programmes like that just try to make everything look horribly sad. I use writing to negate that.

Garden season

Garden season has commenced. The Christmas tree, which was still in the garden, lights and all, was replaced by a pot of violets. I can be found in the garden again, planning. The shed has gone all moldy, so we decided to push it to the back to make the garden itself more spacious. It’s never been clearer. Gardening season has begun.

The return visit

In April we’ll have a Dane over, with whom Floor had stayed during her trip to Denmark. Floor wants us to take all kinds of measures, like a hook on the bathroom door, shower curtains and taking those silly bike bags off of her bicycle. They’ll be going on a bike trip and she doesn’t want to look stupid. What makes it even more complicated is the fact that Floor is the only one of her friends who will be hosting a boy. She’ll have to do boy things. In short, his visit is preceded by a bunch of dilemmas. Luckily, they don’t see me as one of them.


Today, on Monday, March 31st 2003, I turned 48. Yesterday, we had a small celebratory gettogether. I don’t feel like it’s my birthday. Nonetheless, I’ve been pampered to bits. Hein’s mother baked an apple pie and prepared three different soups. My brother gave me a bouquet of 48 roses which made me very emotional. What a wonderful gesture. I’m already 48. Wow.