Diary

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”

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”

Sinterklaas

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”

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”

Picky?

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”

Needed

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”

Easter

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”

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”

Coughing

My coughing has become a recurring problem. I’ve spent another whole night hacking before getting all of the mucus out of my trachea. It wasn’t pleasant, for me nor for my family. I’ll look for some information on tricks that can help me get rid of mucus easier. Continue reading “Diary June 2004”

I actually wanted to combine my July and August entries. I don’t have too much to write about. But when my website suddenly got a lot of hits at the start of this month, I changed my mind. If I don’t, people will just get worried for no reason. Continue reading “Diary July 2004”

A party CD

I’m surrounded by people who are approaching 50. That’s cause for celebration. Sadly, a lot of them are overshadowed by the passing of loved ones. In order to celebrate without creating too much of a ruckus, we decided to make a website and put it on a CD-ROM. Continue reading “Diary August 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”

Reading

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”

Done

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”