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.

Easter brunch with Floor and Lieke. I decided to wear a blue vest for a change.


Very early on in my life with ALS, I learned that I’m least likely to choke when I keep my head down while eating. Since then I have, and it’s always worked. I only aspirate occasionally. But keeping my head down is hard for me these days. Besides, with a tilted head it’s almost impossible for my carers to feed me. So now I try to keep my head upright, resulting in food going down the wrong pipe more often. That’s not too bad. A bit of coughing and it’s fixed. Granted, sometimes it does take 30 minutes to hawk up all of the mucus, but at least I don’t panic while I”m doing it. Until Easter Sunday. I got a piece of tiramisu stuck in my windpipe. 7:30 till 11:30 PM were spent coughing it back up. I did panic then, hearing myself gurgle and feeling progressively more warm as I did. I wanted someone to crack a window, then changed my mind; too chilly. That happened three times in a row. I always get hot when I’m panicky. Whatever, I’ll take off my vest. I had to be helped up after slumping in my chair. The sound and thought of me coughing consumes me. I kept gurgling. While it did initially cause a commotion, after a while my family just accepted my coughing as background noise. When I finally got the bulk of the slime out of my throat, I was knackered. The next day, people inquired if I’m alright now. My abdominal muscles hurt the following few days, like I’d done intensive fitness exercises that Sunday. I think I’ll just keep my head down for now.


My new website has garnered some positive reactions, even public ones in my new guestbook. I hadn’t given it much thought and all of those heartfelt public messages actually shocked me a bit. Before, I could process all of their messages privately, through email. Now, I’d have to do it publically. Thanks for your messages, everyone. Besides that, Adrie linked my website to a site that tracks how many visitors websites get on a daily basis. I average about 20 to 30 visitors, with 57 as my personal record. Ten percent of them are from Belgium. I get some intermittent visitors from Canada, Switzerland and Denmark, but they’re probably just misclicks. Every day, I look at how my numbers are doing. How fun.


It looks like our sunroom is finally happening. Someone came by to assess our need for an extra sunroom. It turned out that our municipality wasn’t as enthused about it as we’d hoped, which had everything to do with my life expectancy. Luckily, the assessor was convinced that an extra room was necessary. Three days later, we got a call from our engineer. Finally, we can start building.


Never write about feeling useless, because you’ll be swarmed by people asking for contributions. For example, I was approached to write something about Napoleon for an art show called “Small cards, great stories”. It’s about playing cards from 1650 – 1950 that were repurposed as writing paper, which was apparently very expensive at the time. Like that, Louis Napoleon accidentally left his kerchief at a slumber party. The hostess graciously held onto it, which she denoted on the back of a playing card. The aforementioned card, a nine of hearts, and the corresponding kerchief, are on display at the exhibition. When talking about Louis Napoleon, one has to talk about Napoleon Bonaparte. I did just that. I learned a lot about Napoleon and I’m eagerly awaiting my next assignment. It’s funny how I would have never had this experience if it wasn’t for my online diary.

Going to bed

Things often go wrong when I’m trying to sleep. My arm grazes my PEG, or my pillow isn’t directly under my head, or my foot isn’t under my blanket, or my ear is folded in half under my head. But, while lying on my side, I can barely get a word out, let alone explain what’s bothering me. Hein gets frustrated. After all, he did everything exactly right, so how could something be wrong? That’s when the guessing game starts, with growing frustration from both parties. Now we use a checklist I’ve created. By asking a few questions, he can usually figure out what’s wrong. I hope it’ll prove to be a good solution.

To Oxford

We’ll be going to England with some friends and their kids, from the 1st till the 8th of May. We’ve rented an old barn close to Oxford. We always go on holiday during May break, despite the fact that the weather is always bad. We’ll be visiting London as well as Oxford. I’m looking forward to some things, not so much to others. What will the barn be like? The bed? The bathroom? Once I figure out a usable routine, I’ll be fine.