Diary January 2003

No idea

The kids moved their rooms to the attic. I haven’t been there in five years. I used to have some idea of what their rooms looked like, but now that they’ve moved, I’m completely in the dark. Pictures and video don’t do the atmosphere justice either. It’s like the Euro. I understand people are having trouble adjusting, but I’ve never used them. I don’t even know what the individual coins and bills look like. Continue reading “Diary January 2003”

Diary February 2003

The musical is finished

Last week, I finished the musical. It was all I could think about. It practically wrote itself. Ward had minimum input. He was fine letting me do my thing. 15 pages, some of them copied word-for-word from memory. When I write a lot, my head gradually tilts to the side, making clicking the right words and letters difficult. I was so driven that I managed to finish the project in two weeks. It’s a real 2003 period piece: Idols (and its dreaded jury members), heaps of pop culture, politicians and jokes about our awful public transport system. Continue reading “Diary February 2003”

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. Continue reading “Diary March 2003”

Diary May 2003

How are you doing?

An annoying and difficult question to answer. People think my illness dictates my whole day, but it doesn’t. In fact, I try to think about it as little as possible and I feel normal for the greater part of my day. I try not to imagine what other people see when they look at me, a woman slumped in a wheelchair who can barely talk and needs constant help. (Photos of myself always shock me.) But within my psyche, my illness plays only a small role. My interests, feelings and routines are still the same I think that’s the way to go: to think about one’s illness as little as possible. My life is as regular as I can make it. Continue reading “Diary May 2003”

Diary June 2003


This year’s ALS Day was held in Artis Zoo. Hein had to work in the morning, so we arrived muc later. We got there at two, just after the formalities had ended. From what I could gather, not that many people had shown up. The Valscherm foundation doesn’t attract too many new members, while the number of older members steadily decreases. Vascherm has been instrumental in the founding of the Dutch ALS Centre and they couldn’t have done it without Vincent Straatman, their inspiration. Continue reading “Diary June 2003”

Diary July 2003


Looking to the side, especially to the right, is hard, because of my neck. When we’re out for coffee, I ask my partner to sit half a metre in front of me, taking up most of my field of view, so I don’t have to strain my neck. City sightseeing, going to museums or going to fairs are equally difficult. My companions see so much more than I do, to the sides at least. It means that, during fairs, I’m always looking ahead, gazing the next booth (which is never quite as interesting as the one my companion is perusing). In cities, museums and churches, a lot of beautiful things go unseen. Continue reading “Diary July 2003”

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. Continue reading “Diary August 2003”

Diary September 2003


Ward had to write an autobiography for school, about his family but mostly about what books, poetry and films he likes. He didn’t want to write down that I was unemployed. I told him to just call me a writer. He liked that idea. And I like that thought too, actually. The following week, Ine, an ex-colleague from KPN, called me a writer too. Talk about inflating my ego. I’m flattered. Continue reading “Diary September 2003”

Diary October 2003

The incident

There was another bridge night. Lucy and Jan were there too. Lucy suffers from cancer and is going through chemo, so she was too tired to stay long and didn’t play either, so we talked for a bit before we started. Well, they talked. It was taking a while for us to start playing after Lucy and Jan left, so in the meantime I ate my daily portion of chocolate. Suddenly, I accidentally bit someone’s finger and my tooth came loose. I always panic in situations like that, so I called for Hein. There was still a bit of chocolate in my mouth that I couldn’t get down. Meanwhile, Hein had had enough and wanted to leave. Within five minutes I was sat in the van, leaving the rest behind in utter disbelief. Afterwards, they discussed ways they could offer us support (we’re not much of a support group, mind you). After five years of ALS this type of thing has almost become normal, but people do worry about me. There are ALS patients around whom huge rallies are organised by friends and family to raise support for their healthcare requirements and needs. I don’t like the sound of that and prefer to stay in charge, which I acknowledge may be a mistake. Either way, everyone is looking out for me, so an incident every now and then can’t hurt. Continue reading “Diary October 2003”

Diary November 2003

Smoking help

This morning, I met my new help. Boy, it doesn’t get easier to become accustomed to nobody being home to help me talk and being completely dependent on each other. It made me nervous and wore me out. But we managed and all things considered, it didn’t go too badly. She did take several smoke breaks in her car. When she got back, she smelled terribly. In the same vein, we know a repairman who, while he doesn’t smoke around us, does smell of cigarettes. Smoking should be banned. Continue reading “Diary November 2003”

Diary December 2003


By now, I’ve written 15 poems and had fun writing them. The anticipation is the most fun, honestly. All of them are a bit rude, but that’s tradition. We’ll be celebrating Sinterklaas on December 6th with my in-laws. It’s the most ingrained Dutch celebration. I did an internship at a women’s rehab in the USA once. We had written every single one of the women a poem, which were met with disinterest or confusion. When we knocked on one of our friends’ door and threw some sweets through his open window, he almost went to get his rifle. For context; we were dressed as Zwarte Piet, something Americans find distasteful. No thanks, I prefer the Netherlands. Continue reading “Diary December 2003”