Diary September 2001


The farmer experience

The chickens have gotten bigger and definitely lost some of their charm. They still cheep instead of clucking and still haven’t grown crests. I expect we’ll set them free this weekend. We’ll have to see how they do in the wild. Other than that, we harvested 1.5 kg of tomatoes, 2 apples and enough potatoes for dinner. Not bad, considering we’re beginners.

On Thursday, the four of us went to the forest to look for a good place to release them. Someone told us not to deposit them at a petting zoo, because they’re territorial. There are lots of wild chickens. We put them next to the fence of the petting zoo, so Floor can check on them on her way to school. After throwing them some food and taking a few pictures, we left the chickens behind, like Hansel and Gretel. A rooster and a hen were already present, so let’s call them their adoptive parents. Floor spotted them the following days and they were thriving.

Dealing with carers

Dealing with carers is delicate business. Both parties have to feel at ease. It’s great when we hit it off, so I try to invest in that relationship. Carers are few and far between, so it’s important to let them know what you want. You can’t be frivolous with those relationships. By the way, I have more respect for people in healthcare by the day. People who deal with dinks like me. (Floor read along and told me: “you’re not a dink”.) It has a more positive effect on society than selling phones. Having friends and family as carers is a whole different story. You want to pick up where you left off, but of course that’s not possible. Family has it the hardest. Sometimes they have to face my anger. With Hein, I often debate whether I should ask him something now or wait for later, but often I feel like I’m asking too much of him.

Whining doesn’t help, creates a toxic environment and pushes people away. I’ve never been a nag, but I do get angry and impatient. Complaining in writing is foreign to me and doesn’t make for a great read. One has to think of their readers. That’s why I probably sketch my life as better than it actually is. That’s also a way of coping.

A happy person

My father-in-law was concerned during our holiday; was I doing alright? Now that he’s read my diary and seen the relaxed atmosphere at home, he’s reassured. He told me he’s surprised and amazed that I call myself a happy person. I dwelled on that for a long time. Why wouldn’t I be happy? Happiness is impossible, only when you don’t use your current situation as a given, but constantly question everything and refuse to accept your illness. That’s just the way it is. In my situation, I go through fun and less fun things. In my situation, I can still be a happy person.


I received an email from Singapore from a Dutch woman who married a Pakistani man and converted to Islam. She sent a host of research papers proving that prayer does help; people who pray are more resistant, heal faster and people praying for you is also beneficial. She told me to ask people to pray for me. I know there are people who pray for me. I like that thought.

Asking people to pray for me, though, is something I don’t see myself doing. It’s taboo to me. In Islam it’s a part of everyday life. And even in America it’s run of the mill. That’s obvious after an attack like that. However, in the Netherlands it’s never really addressed.

Floor is worried

It started during our holiday. Floor felt strange tremors in her arms and legs every now and then. She completely panicked. I realised quickly that it was because of me. After all, I often have involuntary muscle contractions (fasciculations). Would being the child of an ALS patient lead to a lifetime of being scared to get the same disease? How do the parents have to deal with that fear. We told her that it’s not hereditary when ALS manifests this late in life. It didn’t help much, the panic didn’t subside. We asked the GP. “Probably growth symptoms, happens a lot”, he told her. I hope that helped. I’m afraid that she’ll never completely get over that fear. This morning, Ward told me about muscular twitches in his arm. Is it just growth? I don’t want to do this to my kids.

The doctor tested her reflexed and took a good look at her. She hasn’t mentioned it since.

A new carer

For the whole month of September, care went as per usual. Despite her imminent departure, Marje worked on every Tuesday of September. Inge took care of Mondays, but in October she’ll have class on Mondays. In the meantime, we’ve been looking for someone else. On Monday, our new help Astrid came by. We tried using the toilet. We still have to get used to and start trusting each other, she’s rather petite. I immediately liked her during her preliminary interview. I liked seeing her beforehand. It’s drastically different than the last carer, who simply showed up to work. All there is left to do now is learning to trust her in the bathroom and we’ll be in the clear.