Diary January 2004

Happy New Year

My mother always adds “as best you can”, even when wishing me happy holidays. I don’t like the addition. Why wouldn’t I have a happy new year or a merry Christmas? I understand her hesitation, but that doesn’t mean I like the clear allusions to my illness. These days I don’t look forward as much, preferring to look back and count every new day as a nice extra. My only goal in life is to live my days to the fullest. Continue reading “Diary January 2004”

Diary February 2004


On Friday afternoon, we interviewed, or rather, met our new help. After some meditation, I decided to not hire her. Why? Granted, she was nice and very good at her job, but when she arrived she immediately touched my face and again when leaving. I don’t doubt she had good intentions, but I don’t appreciate behaviour like that one bit. It’s something nurses tend to do; mothering me to bits. I already have a mother, thank you very much. I want someone who sees me as their equal. I spend whole days with my carers, they’re not short visits. I need to be on the same wavelength as my carers. Besides, I use my PC a lot, so some knowledge of computers is a prerequisite. I panic when my computer crashes, especially when there isn’t an interpreter present. Am I just being too picky? Continue reading “Diary February 2004”

Diary March 2004


I was restless last night. It sounds stupid, but I lost sleep over a party Sara and I are organising. People have taken issue with the location we picked (Avifauna), especially a bunch of men who left all of the planning to us. But that still doesn’t explain why I was so upset. I couldn’t sleep and even cried a bit. This morning, I wrote a ruthless letter to the aforementioned gentlemen, which made me feel a lot better. Maybe I was upset because I was unable to verbally defend my choices. Maybe it was because I had vested my happiness on this one dinner party. Maybe it was just me being a sore loser and being upset that I didn’t receive unanimous support. I threw the towel in the ring. They’ll figure it out. I felt so alone. Continue reading “Diary March 2004”

Diary April 2004


Easter Saturday was messy. My computer was completely shot and our expert worked on making the upstairs computer head mouse compatible. It always stresses me out, because I’m nothing without my programs and old files. I’m too dependent on them. Afterwards I had to wolf down my food because we were expected at a friend’s house. When I got there I was so tired that I asked if I could sit somewhere else to close my eyes for a second. It was nice. The following day, we had brunch with Hein’s family in Oosterhout. Having Floor and Lieke at my sides to translate what I was saying made it an agreeable afternoon. As a belated birthday present, Monieke gave me some stamps with her late cat on it. Very special, very much like Monieke herself. On Easter Sunday we did an easter egg hunt. The men’s team beat ours by one minute, not bad for a team with a member who’s unable to leave her chair. The kids don’t want to let go of this tradition just yet. We spent that afternoon in our garden with my mother. Continue reading “Diary April 2004”

Diary May 2004

A difficult person

The other day, someone gave my family their compliments for being able to deal with a “difficult woman” like me. That was a hard pill to swallow. Me? Difficult? Some time later, I got an email from someone who, alongsider her sister, took care of her aunt. She wrote: “We, and the carers at her nursing home, did not have an easy time helping her. She had very high standards”. That’s the crux of the matter: are you in a position to make demands from people you’re totally dependent on? “Of course,” everyone would say. Continue reading “Diary May 2004”

Diary September 2004

The Blair Witch Project

Yesterday, Ward watched The Blair Witch Project. It’s a movie that’s shot like a home video about three teenagers looking for a ghost in the woods. At the time, it was hailed as one of the best and most terrifying horror films ever. We went in feeling slightly apprehensive. Ward repeatedly wondered aloud when the scary part would start. Just in case, he had a comic book to hide behind if the movie got too scary. As it turns out, there was no need for worry. It wasn’t scary at all. Continue reading “Diary September 2004”

Diary October 2004


I’ve taken up reading again. I’m reading a book by Renate Rubinstein, in preparation for our holiday in her former home. My carer does her own reading and turns the pages of my book as well. It’s very cosy, one of the things I like about autumn. It’s the first book I’ve read in 5 years. I’m still a very impatient reader. If a paragraph is too uninteresting, I’ll just skip it. I’m not a connoisseur of elegant language. It made me remember why I don’t enjoy audiobooks. I like to dictate my own speed. The novel is about a star-crossed love affair between Renate and Simon Carmiggelt. Neither of the two sounded familiar to my carers, who just stared at me, glassy-eyed. I’m getting old. Continue reading “Diary October 2004”

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. Continue reading “Diary November 2004”

Diary December 2004

I didn’t feel like writing much this month, so I didn’t. I think a few pictures will suffice for this diary entry.


This is the result of all of that hard work. It’s all done, everything has been repainted and the garden has been replanted. I haven’t visited it yet. I don’t like change and rely on my ancient stress-free routines. Once they deliver my bath chair, I’ll start sleeping in the brown chair and bathing downstairs. Continue reading “Diary December 2004”