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.

The day prior I had been elated, for the wrong reasons. Floor had an English presentation about America. Despite the fact that she had the entirety of spring break to prepare it, it still wasn’t finished on Sunday evening. That was when I took action. The wrong thing to do when raising a child, but I loved it. Why? Being needed, having an impending deadline, I love it. We wrote a great, easily readable presentation with great pacing. Floor was thankful, although she did edit some parts of the text. Bye bye pacing. Whatever, it’s her presentation after all.
I think these stories are similar. Apparently, I’m so desperate to be “needed” that I immediately take the reigns and forget about everyone but myself while working on anything. That’s what happens when one has to be the source of their own motivation. Every day starts with the question of “what to do?” I’m usually useless, so the feeling of being “needed” is amazing, even if the other party doesn’t always enjoy my input. It’s in my nature. I’m just a bit of a taskmaster.

Into town

I rarely visit our town centre. Last Saturday I did, with my sister-in-law Netty. I hyped it up in my mind, but our main shopping street, the Haarlemmerstraat, is nothing special. Just bunch of hasty people carrying heavy bags and stuffing their faces with food while they go. To think I used to be one of those people. Luckily we walked on and found a few alleyways with nicer shops, walking by churches and fragrant market stands. It’s those moments that make Leiden alright in my book.

Head cold

For the first time in years, I’ve caught a proper cold; runny nose, sneezing and lots of mucus. I split my lip by sneezing a few times. I can’t stay in bed, but by the time I’m downstairs, snot is oozing down my face with nobody to wipe it off. How I miss my arms and legs. My nights got better after putting a cut onion on my nightstand (useful tip from my physical therapist). I’m tired of having blocked sinuses, but I think the worst has passed.


My website has been steadily growing in the background. The accessibility of my diary has seen the greatest improvement. Now it actually allows perusal. I’ve been editing things too, the chapter on alternative medicine, for instance, is a lot more realistic now. I’m excited to see what’s going to happen to my site’s new guestbook. Please, by all means, leave a comment. The person responsible for my new website is Adrie den Hertog, my sister-in-law. She has a company that has been building and maintaining websites for over a year now: Zin In Webdesign www.zininwebdesign.nl. Adrie, I couldn’t have asked for a better birthday present.


Even during Sara’s party, my head cold turned heads. We all worked together because, of course, I couldn’t keep myself from helping with the organisation; I love organising too much. Everything went well, except for the weather. Well, it was a success and the day after I received loads of heartwarming emails, which made me forget all about my prior feelings.


On Saturday, I went on a walk with Netty through a storm. The wind made beautiful ripples in the trees. While it was storming, there wasn’t any rain. I loved feeling the wind on my face after being inside for a week and a half. It felt invigorating. I would have never gone outside of my own volition, but thanks to mine and Netty’s arrangement, I’ve seen some things I wouldn’t have without her.


Last week, the architect gave us a shocking budget. For a simple sunroom, we would be set back 16,000 euros, which wouldn’t even cover the building itself. We went to town hall, and the people there were very sympathetic to our plight. Our municipality will find us an architect and will subsidise a part of the building costs. I hope it’ll be quick, but it probably won’t be. As expected, after a strong start, I haven’t heard anything from them in a while. All we can do now is wait. It’ll probably be a while.

Photo sessions

My new website needs new photos. Hans took some on Saturday. My reactions to the camera’s flashes were odd. Exaggerated reflexes are part of having ALS. A lot of the pictures takes went straight into the bin. The following three are the ones that made it in. Another one became the website’s header. Did I pick the right ones?



Our daughter has a flourishing social life. Before, she only had plans on either Friday or Saturday evening, but these days she’s often busy on both. That’s the way it goes. And our son is busy playing games with his clan, on the same nights. I have to say, I don’t like it. Last year, we watched Idols together, but by now we couldn’t care less about it. Passé. And I can’t say I care much for it anymore either. It’s unbelievable how quickly fads come and go. Hein doesn’t watch much TV either. In short, weekend nights have become a lot more boring.

A birthday spent outside

March 31st. Today I turned 49. The weather was good enough for us to spend it sitting outside. I was pampered and spoiled the whole day. And yet, I’m kind of glad it’s over. Onward, to 50?

A bad birthday present

On my birthday, I got the news that Sandra is quitting, effective on May 1st. Bummer.