Diary March 2005



On Wednesday, March 2nd, the long-awaited documentary on ALS was finally aired. I don’t like programmes about serious diseases and I never watch them. Every one of them pretends to be in-depth but always leaves me feeling like they haven’t even scratched the surface. But this time, I knew some of the people involved, so I was curious. I enjoyed how every person they interviewed had their own way of dealing with their illness, ranging from getting the most out of life to doctor-assisted suicide, from meticulously planning everything out to living from day to day. I’m more of an improviser myself. The only people who I knew before they were euthanized were male. Maybe that’s because they were used to being in control. Maybe they’re unable to deal with such radical lifestyle changes. It would have been interesting if the documentary focused more on that aspect of ALS, but they barely mentioned it. I’m so impressed with Ria Velthuizen, who managed to shed a positive light on a topic as depressing as ALS. I wouldn’t have been able to.


Through the window, I watched the snow fall. This year marks the first time I’ve had zero intentions of going outside for a walk in the snow. It turned out that I’d made the right call, as the snow got so thick that the wheelchair would have just gotten stuck. We went on a short walk on Saturday, but my head wobbled to and fro as the people behind me struggled to push me through the snow.


By now, a survey for people who were treated in China has proven that the effects of the treatment generally last for three months. In December of 1997, when I was still thought to have MS, my ability to walk rapidly deteriorated. When I did, it was at a snail’s pace and completely wear me out. My neurologist prescribed a five-day high-dosage Prednisone treatment, which is the usual prescription for MS patients. My walking immediately improved. When we went on holiday the week after, I felt unstoppable as I hiked up and down the mountains. Back home, I even managed to go on a 7 kilometre hike at a decent pace. In March, it all came crashing down. I was having a lot of difficulty going up or down even the smallest inclines. By April, I was back where I started in December. Later that month, I got the ALS diagnosis. Prednisone isn’t supposed to work on ALS patients and yet my walking improved drastically. It lasted for about three months too so now the question is: is the Chinese treatment more effective than a placebo? Now, I’ve written more than enough about China. Consider this my last addition to the China discussion.

Cognitive Dissonance is the psychological theory that states people will do anything to justify their own actions, beliefs and feelings, even if it means ignoring facts that are in opposition to those three. It’s applicable to both sides of the China discussion.

Flat screen

My PC kept freezing, so our computer expert, after listening to the creaking hard drive and noting my intense usage of the machine, advised us to buy a new one. When he asked what I wanted from a new computer, I indulged my fantasies for a second. Would I like a flat screen? Of course! Nineteen inch? Sure, why not. I felt kids’ jealous looks boring into my back. “Oh sure, she gets a new computer. What about us?” It wasn’t even in my own interest. I should have known better, I hate change. I’m still using my old chair as my new one gathers dust, just because it feels too different. My new shoes? Too cramped, I’m not using them. So, one night I was using my new nineteen inch screen. Good lord, it’s massive. I was already having trouble using my head mouse on my old screen, but this? There I was, having to make ludicrous head maneuvers to complete even the simplest tasks. All I wanted was to get my old monitor back. So I did. Like my chair and my shoes, my new monitor has already fallen in disuse. I’m still getting used to Windows XP. My word prediction program is not working and neither is my cursor, which constantly disappears. In shot, I’m back to using my old PC too. I don’t like change, but I never learn either.


I’ll be celebrating my 50th birthday on Saturday, April 2nd. I thought of planning a buffet, but then I realised that I wouldn’t be able to eat any of it myself, so I scrapped it. Dancing wasn’t going to work either. That was why I decided, completely against Hein’s wishes, to organise a karaoke party. The idea alone made me giddy with excitement. I would be participating, of course. A lot of people told me that they would like to come, but didn’t fancy singing. What was I going to do? Create pairings and force them to sing? Everyone I asked seemed to think that was a bad idea. It’ll be fine, they said. Besides picking someone to start the night off, directing the other organisers and making a list of songs, I didn’t have that much control. I am becoming more hopeful. I’m back in the saddle again. Last night I couldn’t sleep for an hour because I was so excited. Let it go, Jeanet. Let it go.
On Wednesday I had a headache, I was nauseous and I didn’t feel like eating. Was I just stressing out?

50 years in photographs

I picked out some photos for my party. While I did like looking at old pictures, it didn’t send me on a nostalgia trip. I don’t get nostalgic about music either. I actually prefer contemporary music to what I used to listen to. Just one series of pictures made me feel a twang of nostalgia, the photographs we’d taken on holidays when the kids were still small; Mallorca, Menorca, Ibiza, France…


I turned fifty Thursday, March 31st. Hein and the kids hadn’t even asked me what I wanted for my birthday, so my hopes weren’t high. I wouldn’t have known what to ask for either way. But in the morning, they were all ready to surprise me. Floor treated me to a spa day, Ward, smiling wide, got me a towel embroidered with ‘Jeanet, 50’ we’ll be going to see the musical Mamma Mia on April 1st. What a day. What followed was a deluge of birthday cards, congratulatory emails, balloons in the shape of the number 50, flower bouquets and a moderate amount of birthday guests. The weather was great. What else could I ask for. I’m already looking forward to Saturday.